(Though this was originally written in 2009 about having a thyroidectomy or being thyroidless, it has been updated to the present day and time and fits no matter what year this is being read.)
There was a time when I thought being hypothyroid without a thyroid was really no different than being hypothyroid with one. Hypo is hypo, and we are both dependent on treatment.
But I was wrong.
There really is a difference in our journeys–even if we both end up with hypothyroidism. Here are four strong reasons it’s not fun being without a thyroid:
1) It’s no picnic to lose one’s thyroid
It starts even before surgery with a biopsy to detect if one has thyroid cancer–not always a comfortable procedure. Then with surgical removal comes the inconvenient stay at a hospital, post-surgical neck discomfort, potential loss of one’s voice or hoarseness and/or other complications, including the loss of one’s parathyroids (this doesn’t happen to everyone). Treatment with RAI, or Iodine 1-131 to kill the thyroid, has its own risk of lifelong side effects, including gastrointestinal issues, parotid salivary gland problems, and more potential risks. Again, this doesn’t happen to everyone, but the thought can be stressful. Read one patient’s opinion about RAI.
2) The stress of surgery and/or RAI can do a number on one’s adrenals
By repeated observation, there seem to be a high percentage of those who had surgery and/or RAI who also end up with adrenal fatigue/low cortisol with its nightmarish side effects. Or, if someone doesn’t get low cortisol from the surgery, a high percentage get it simply from the typical post-treatment with Synthroid or Levothyroxine–forcing one to rely on conversion alone. Being on T4-only is the number one predictor of having overly stressed adrenals, patients have observed and experienced. See the last chapter in the STTM II book by Lena Edwards, MD, which explains reasons why our adrenals can head south.
3) Some have a unique anguish about their new vulnerability
No one can live without a thyroid. And that thought, along with the absolute lifelong dependency on thyroid meds, is not a comfortable state to be in, say many who had to have their thyroid removed. Granted, those with a low-functioning thyroid for any reason (active genetic mutations, hashimoto’s damage or any other cause for damage have that life-long dependency as well. But those without their thyroid feel especially vulnerable.
4) Life long regret of an unneeded surgery can be huge
Many patients came to realize, after removal, that they may not have needed the removal at all. For example, some patients have reported that their thyroid was removed simply from having Hashimoto’s disease (which could have been treated without removal). Some had their thyroid removed simply from “cancer possibilities”, yet they never had cancer at all.
Please know you aren’t alone if you are living without a thyroid.
NOTE; If you have a short story to tell about being thyroidless, use the Contact form below to let Janie know you have a story. We’ll link to it on this page.
**************************
** Learn why Synthroid or Levothyroxine is the worst way to treat your hypothyroidism.
** See all your options for a MUCH better thyroid treatment.
** LEARN from the STTM books–it’s IMPORTANT for you to be informed.
** Have you Liked the STTM Facebook page? It’s a great way to receive daily inspiration or information!
** Check out all the STTM information pertaining to thyroid cancer, right here.
Important notes: All the information on this website is copyrighted. STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
Write a new comment below
179 Responses to “The Agonies of Being Thyroidless–4 reasons it sucks”
Corrie Bignell
I was diagnosed with thyroid cancer, that had spread to my right side neck lymph nodes. They removed my thyroids in 2005, total thyroidectomy with right side neck dissection. They did not take my parathyroid’s. I have received 2 rounds of radio active iodine. I was in nursing school at the time, and was totally indoctrinated, and trusted the medical professionals. Fast forward to present day, I have left the nursing profession due to non medical compliance with the cv vaccine. I think back to 2005 and I truly believe that my thyroids could have stayed intact. I am now on Synthroid 200mcg daily. I am searching for alternatives that can boost my health. I am grateful that I was guided to this site!
Ruth
I have lived without a thyroid for 22 years. I have been on every thyroid medication you could think of. Synthroid never worked for obvious reasons. Desiccated worked for a little while but I found myself winding up with reverse T3. Tried Nature thyroid, Erfa and Armour. Armour worked for awhile until they re-formulated it with micro-crystalline cellulose which created horrible joint pain. I think that was around 2010. I have a deiodinase dysregulation or dysfunction. I do not convert any T4 to T3 at the cell level. Thus I am left with T3 meds only. They are expensive and difficult to dose due to the short half life. I dose about every 4.5-5 hours. Generic liothyronine has made me sick in the past on two occasions. They were coming out of China. I use brand name Cytomel which again is expensive. Titan Pharmaceuticals was working on a T3 implant but got shut down by big pharma. Which is so sad for those of us that have a conversion problem. I was told I had a cold nodule and my thyroid had to be removed. The pathology report returned with follicular and Hurthle Cells which were not malignant. If I could do it all over I would never have let them take my entire thyroid. Currently I have a CPPD flare. ( Not gout, it is a different crystal-calcium pyrophosphate deposition disease). It is painful and related to not having a thyroid. I urge anyone to get multiple opinions if they are facing the removal of the thyroid gland. Your life will never be the same once it is gone. Big pharma does not have our best interests at heart.
Joshua Davis
Thank you very much for this website and the information on it!
I wrote up a blog post on my experience and the information I wish I had here:
Living Without a Thyroid – What I wish I had known before making this choice
https://joshuadavis31.medium.com/living-without-a-thyroid-4bf7c80f2f1d
Joanne
I have been trying to coach my partner who had his thyroid removed in 2010. I had heard you interviewed years ago by Dr. Ronald Hoffman, so I was somewhat aware of possible issues. Sure enough, after about six years on synthroid, he started having issues with being tired all the time, and really being thrown for a loop at the slightest provocation–high blood pressure, passing out, etc. He has next to no appetite, eats very little (but healthy), no snacking and is very overweight. His bloodwork was all over the place, making absolutely no sense even to the doctor, so, at that time, I intervened and was able to get him off of synthroid and onto Armour. At that point, all of his other bloodwork fell in line, and it just became an issue of getting his thyroid markers in line with correct dosing. He switched doctors and the new doctor did not order the free T3 &4 or the RT3. Right now he has low TSH (.14) which may be good(?), and low T4, which I presume is not good (3.7). He has a doctors appointment to go over the labs, and I was hoping to get some guidance. This is a wonderful website, but I find it confusing distinguishing the information relevant to people with thyroids from the info relevant to people without. Would love any guidance you could provide. He is 66, around 5’11 and weighs around 240lbs. What really concerned me this time was that his fasting glucose was high (109), although his lipid panel is phenomenal! Can his high glucose be related to this mismanaged thyroid? Many thanks for whatever you can offer!!!
fini
I’m having a real struggle with medication. Even before my TT 6 years ago, I was on a pretty high dose for my size (5’5″ 140 lbs). Taking 3-4 gains of NDT. Now I am 40 lbs heavier and my labs show I’m close but not optimal, and my symptoms are extreme. I think I should be on 6 grains (split into 5am / 11am doses), but every doctor says that is way too much medicine?
TSH .06
FT4 1.3
FT3 3.2
RT3 13
I’m completely stumped on finding a doctor. I’ve been working with “the best” functional MD’s in LA (not just one, I have worked with 6 in the past 4 years trying to figure this out). All of them dropped the ball keeping me under medicated, not listening to my symptoms, blaming insulin resistance when clearly my thyroid was not optimal and with almost 40 lbs of weight gain, and complete weight loss resistance, 95.6 body temp, hair falling out, skin issues, GI issues, foot and joint and back pain… Plus all of my other hormones are out of whack: low-norm cortisol, estrogen dom, progesterone is 0.32.
I went on keto and IF for 4 weeks and completely reversed my insulin resistance to prove that was not the problem, as I still gained 4 lbs in the process. The doctor finally acknowledged that it was my thyroid ($250 for 15 minute appointment to confirm what I have been telling him for 4 years now) added 10mcg Cytomel to my 4 grain NDT dose. which is not doing a thing. I can barely make it through the day. I can’t hold a job because I am useless after 2pm.
I really wish I had not taken thyroid out and just kept an eye on the cancer. “Active surveillance” is the new guideline. Hoping they will soon master 3D printing of thyroid and be able to transplant one day soon.
I’d love your support or advice. I’m so overwhelmed and just don’t have the fight in me.
Robin
I agree I would have just done surveillance on the tumor that was encapsulated on my thyroid I’m miserable without a thyroid and they need to really get it together about being able to transplant healthy thyroids back into somebody’s body that does not have one
Valerie Scott
Hand raised here too; THYROIDECTOMY in 1986 when i was 26, due to benign lump, WRONGLY MEDICATED, THANK GOD FOR THIS SITE.
Fatigue, low ebergy, low metabolism. Weight gain, weight loss resistance. To top thing off, a complete hysterectomy in 2000. No hope of having a metabolism again, doing the best i can. Taking Armour now.
Sandra vance
I has my thyroid removed in 2004 and due to complications they remove the parathyroid the compete bed nothin left I have problem ever since my lever is 0.030 I have jerking shaking in the face and jaw and shaking all over I need some advice
Janie Bowthorpe
Sounds like you need to get help from a good doctor.
Joel Palomar
I am thyroidless and life very difficult to manage. Need badly help
Janie Bowthorpe
It’s only difficult if you are on nothing but T4. Are you?? You badly need this book: https://laughinggrapepublishing.com/product/sttm/
Joel Palomar
I am all normal labtest within range TSH, T3 and T4 but still feeling ill, weak and tired
Joel Palomar
Hi Janie,
What would I do about my T4. Its also normal I have T4: 11.27 (range: 6.10 – 12.20 ug/dl).
Janie Bowthorpe
Is that the total T4 or free T4? If it’s the free, that’s too high.
Joel Palomar
Hi Janie,
Last 3 months ago I had this test accordingly
TSH: 1.52 uIU/ml (range: .35 – 4.34)
Free Thyroxine T4: 1.53 ng/dl (range: 0.7 – 1.48)…..High
Free Iodo Thyronine T3: 2.50 pg/ml (range: 1.71 – 3.71)
What causes the Free T4 level high and what is effect to the body.
My most common complaint are: Weakness and Tiredness. Muscle cramps, muscle pain. Difficulty breathing but not much now.
Hoping for your kind answer.
Thanks,
Joel
Janie Bowthorpe
Are you currently on a T4-only thyroid med and taking too much? T4-only just doesn’t work well.
If you are not on any thyroid med, FT4 goes high as RT3 is climbing. Then it will fall. https://stopthethyroidmadness.com/reverse-t3
Joel Palomar
Hi Janie,
Nope…im only taking LEVOTHYROXINE the entire of my life since I was thyroidless 2018.
Janie Bowthorpe
Then you need to trust the experiences and wisdom of patients before you. https://stopthethyroidmadness.com/t4-only-meds-dont-work
Joel Palomar
Hi Janie,
I am planning to switch to NDT and try how it works in my thyroidless. Can be?
Janie Bowthorpe
Not sure what you are asking? If it works without a thyroid? It does work whether thyroidless, or having Hashi’s, or just plain hypo. It’s explained here: https://stopthethyroidmadness.com/natural-thyroid-101
Joel Palomar
Hi Janie,
My main complaint about my health after thyroidless.
1. Very weak and fatigue
2. Cold and Heat intolerance
3. Trouble breathing
4. Muscle and body pain
6. Most of all…cannot sleep
Tina
The agony is forever trying to get my dosage right and finding the right meds that work for me. I just got off of NP thyroid a couple of weeks ago and started 100mcg Tirosint and 20mcg Cytomel. Is this a good starting dose of T4/T3 for someone without a thyroid? I am feeling so sleepy and lacking energy especially towards the evening. I’ve read that t3 can make you feel sleepy initially, but improves with time. Is that possible?
Janie Bowthorpe
It may be a good starting dose, but not knowing the actual amounts of T4 and T3 makes it hard to know.
No, T3 does not make you sleepy. But not being anywhere near to optimal can. https://stopthethyroidmadness.com/optimal
Joel Palomar
Hi Tina,
Same with you I am now in the ill like you especially towards the evening weak and worn out.
George Rivera
Hi, people without there thyroid. I had awkward different moods. It took a year for the MD finally got the appropriate dosage. In that year, I suffered without telling anyone. I’m a Airforce retired veteran of 30 years, I didn’t confide in them because, to me it would show weakness. I hope this website can help me with advice and share the different moods. Thank you and Godbless, George
Stephanie
I have been reading the STTM website (and books) for years as I dealt with Hashimoto’s. The information was very helpful. I always skimmed over bits about thyroid cancer and thyroid removal, since those weren’t immediately relevant to me. It seems that I am now faced with them, however. I am having biopsies done in less than 24 hours, and things are moving fast. I read many comments stating that someone regrets having their thyroid removed due to thyroid cancer, but is there really an alternative if the biopsy shows cancer? One could always decline surgery, I know, but is that the alternative that people wish they had chosen, or is there something else? Do the alternatives hinge on the type of thyroid cancer? I know that it is annoying to ask questions that would probably be answered if I were to read all of the website materials on thyroid cancer and removal, and re-read the books from this perspective, but it probably took me a good year to process the information the first time around (brain fog and all) and I don’t have anything near that kind of time now, so “cheat sheet” type responses would be much appreciated. I am sure that my thyroid looks horrible due to the years of Hashimoto’s, and I don’t want to have it removed just because of that. I had a CT scan that showed a bad looking thyroid (nodules, I believe) and enlarged lymph nodes. I would be shocked if the CT scan DIDN’T show this, due to Hashimoto’s (including the autoimmune aspects). I have A LOT of cancer in my family history, so I also fear anything that heightens my risk of cancer. I really need fast and good information so I know how to determine my next moves. Luckily, I have good doctors. I just fear the possibility of taking an overly aggressive approach and later regretting it, but I also don’t see myself as being comfortable with leaving cancer or possible cancer untreated.
Janie Bowthorpe
I think the majority feel they would rather get it out if there’s a definite cancer.
Stephanie
Thank you for the fast response!
Brooke
Hope you are doing well. Just visiting the site and wondered what you decided? I had my thyroid removed last year due to diagnosis of thyroid cancer- it was small but nodules the Dr. suspected would become or be cancerous as well. I also was discovered with removal that I had Hashimoto’s. I can say my throat feels so much better in that I am no longer feeling like someone has their hand around my throat is the best way to describe it and I can breathe. The downside is now my parathyroids even though they were preserved are probably never going to work or some are damaged. I suffer now from low calcium and have to take Tums multiple times a day or else it drops and I begin with numbness and tingling that starts at my hands and goes up, etc. That is the only downside I’m finding and its scary at times. I don’t take calcium supplements at this time b/c I can’t swallow large pills (never could)…and I haven’t taken the time to look for a small tablet of calcium. Hopefully you’ve found some answers! good luck to you….
KarenK
Hi All. At 15 years old, I had a hyperthyroid, toxic multinodular goiter, and what they thought was Grave’s Disease. I had the RAI treatment, and all was well for 20 years. I started having all sorts of symptoms over the past 10 years, and couldn’t figure it out. My numbers were always normal. Found out I had a parathyroid tumor, and that my goiters had grown so large that it was pushing on my windpipe. It was hard to swallow sometimes and to take in deep breaths. You could see it protruding out of my neck a bit. My surgeon said that it was growing down into my chest, which is NOT good. And that it was approximately the size of his fist. He said I needed surgery and I had the whole thing, including the parathyroid tumor, removed in January 2018. They put me on Synthroid, and I’ve had some ups and downs trying to regulate it.
I definitely feel different. I am not the same person as I was before surgery…even though that person was pretty messed up by the parathyroid tumor symptoms!
One thing I have to say is that T3 (Cytomel) did NOT work for me. It doesn’t work for everyone. It made me crazy. My heart beat faster. I was extremely angry (not like me at all), and irritated with everything. I caught myself screaming and banging my hands on my steering wheel when some city workers were filling a pothole and blocking my route to the train station. I felt like a psycho afterwards – total embarrassment! they looked at me as if I was a crazy person. Once doc took me off T3, I was normal again.
I’m still off and on with how well I feel, but I’m hoping to try NDT at some point if I can find a good functional medicine doctor who will give it to me. Just afraid to fix something that isn’t completely broken, you know? I have pretty good days. Only gained 5-10 lbs over the past 1.5 years since surgery. But that may have to do with my genetics/body type. Lost some hair, but it’s growing back. And I’m feeling more motivated to paint again.
One question…. has anyone had menstrual spotting between periods since having surgery, when you never had spotting before? I’m noticing I have it monthly, usually 14 days before my next menstrual cycle. It’s worrying me that it’s some sort of cancer, and I see a gyne in October, but I’ve also read that thyroid hormones can affect your periods. Can anyone relate?
Thanks!
Karen K.
Janie Bowthorpe
Sorry that this wasn’t approved sooner. The notifications I’ve been getting show nothing, so I’ve had to figure out to go in manually to see these.
Jennea
I just found your post. I’m 4 months post TT, and was having regular cycles but this month I have had spotting before and after my period. I’ve been spotting now for almost 2 weeks after my heavy 7 day period. I am awaiting my labs to come back to see if I need to change my dose of levothyroxine and cytomel. I’ve only been on the cytomel for a few weeks, so maybe that’s what’s changed for me with my period? I know low or no thyroid can affect menstrual cycles. I’ve gained like 10 lbs since surgery, despite not eating more…in fact I feel like I eat less now. I’m going to try eating better and exercising to see if it helps. I’ve always been thin so this added weight (of course it’s my stomach) is not welcomed.
Janie Bowthorpe
If you underdose yourself with T3, your hypo comes back with a vengeance. Also, after surgery, your adrenals can go south. That can cause T3 to pool–go high and not make it to the cells. You need a 24 hour adrenal saliva test. https://sttm.mymedlab.com/sttm-profiles/zrt-saliva-adrenal-4-sample–2 The compare the results to the Lab Values page on STTM.
Jennea
I’m going to see a new endo next week to see if they’d be willing to do that test for me and test some other things. I keep hearing about adrenals being affected and never knew that!
Janie Bowthorpe
Endo’s are too often the worst doctors you can see. For one, they will do a blood cortisol test, and that’s not what you want. https://stopthethyroidmadness.com/saliva-cortisol Second, they have no clue how to read or treat the results. It’s VERY important that you study chapters 5 and 6 in the updated revision STTM book and hope you can teach and guide any doctor. https://stopthethyroidmadness.com/updated-revision-sttm-book
Debbie Szymanski
I went on Nature Through less than a year after having thyroid removed from cancer and RAI. It worked great until Dec 2018. My TSH was at 2.02 then and is now at 29😳😳. I switched over to NP just today. My doctor at U of M is not familiar with NDT so I just went on dosage close to what I was on of NatureThroid when it WAS working. Hoping to feel better but nervous at the same time because I’m not sure how this NP will work. Any info, guidance, support would be greatly appreciated 😊
Janie Bowthorpe
If your TSH was 2.02, you are were probably underdosed back then. It’s always about getting the free T3 towards the top of the range and the free T4 midrange. Both. That will also put the TSH quite low, and you have to stand firm against a doctor about that. It is NOT harmful and does NOT cause bone loss or heart problems, as some proclaim. They are confusing it with the low TSH caused by Graves’ disease.
Olga Figurnova
Dear Jenny, thank you very much for your work. Your site is very useful to me. I had a subtotal resection of the thyroid gland in 1995. For many years I took levothyroxine 100, I felt bad. When I lowered the dose to 75, and then to 50 I felt much better. I guess the rest of my thyroid tissue works. Now I turn on thyrovanz. Tell me, please, how to choose the right dose?
Pamela
Hello! I am a 50 yr old mom of 5 and I have had hypothyroidism for 20 years. I was on Synthroid, had RAI at the beginning of my journey, and about a year and a half ago, the radioactive aspects of that procedure caused my thyroid to shrink so severely (over time) that it was almost impossible to swallow, and i was choking on water. The doc removed the gland and the lab said there wasn’t enough tissue left to test properly, but there seemed to be no cancer. it was just decaying in my body. So now i am thyroidless. I have gained about 25 pounds and I have and AM trying everything I can imagine to lose the weight that seems to come from no where! I over reacted at first and dropped to 800 calories a day, while my endo offered me an appetite suppressant (she didnt believe me when i said i was eating that little.) I also told her of my myriad of other symptoms (brain fog, joint pain, fibromyalgia like symptoms, constipation, depression, etc. etc..) and her response was “well, that’s just part of it.” and she had no suggestion except to increase the synthroid. I did my own research (along side my Wonderful Boyfriend who has been SUPER supportive!!) and found that NDT is a better alternative to Synthroid because it has t 1,2,3 &4 as well as calcitonin, stuff that the doc said was inert except the 3 & 4. (I figure if God put it in there to start with, He must’ve had a reason!) So i switched to NDT and feel SO MUCH better on the “its just part of it symptoms” We also found a website that talks about Wilson’s Temperature Syndrome that occurs with thyroid patients. I have been addressing that too.. my temp used to average at 96.2 or so and now it is up to 98.2 on NDT. So there is SOME progress.. but my problem is the weight… I have been trying SO HARD to lose this weight! We go to the gym 2-3 times a week, i work out on my elliptical, and lift the kettle balls, and i go running around my house. I am on a sugar free, carb free, and starch free diet, which is more a way of life than “diet” per se but still the weight goes UP.. Is there ANYTHING I can do to take this off??
Donna
I too was in the same situation as you. I had RAI in 1992 my endo at the time left the state and I was unable to find an endo in my area. My weight ballooned from 125 to 153 in a matter of weeks. After 4 years, I finally found a new endo. He prescribed T-3 cytomel. Within 8 weeks I was back to normal weight. I take a combination of Naturethroid and cytomel now
Grace
I was diagnoised with Papillary Thyroid Cancer in Sept 2016 and had my thyroidectomy in Oct 2016 and it has been the most regrettable thing I have ever done. I’m currently 50 pounds over weight gained over the course of 2 years along with crippling feet pains after thyroidectomy and prior to my thyroid being removed I was a fit athletic person. I find it bizzar that Endocrinologist will discard you once you get the “magical” lab numbers …what exactly is this magical number? Its not the lab numbers on my lab results nothing magical in those numbers for me. For the ladies that want to know about menopause and not having a thyroid the effect are a mental and physical disaster and pretty much ignored by endocrinologist depending on your age “my experience”
I started 2grains Armour Thyroid 8 weeks ago and I do feel better but blood test and endo battle over lab numbers stresses me out and I end up regretting this all over again.
Kathy
Hello Grace,
Your comment has been helpful to me, as I have recently been diagnosed with Papillary Thyroid Cancer also. I am against having the surgery and am seeking out alternatives, but most doctors don’t want to help if I don’t have the surgery. I’m sorry to hear that you aren’t feeling well and hope the Armour Thyroid continues to help you.
If anyone has had luck with alternatives to surgery, I would like to know about it.
Dora
Grace – Thank you so much for sharing what happened to you. I pray and hope that you are beginning to feel better and that different meds can help you to lose weight and have more energy. Kathy – I am in my mid 30’s and have 5 young children. I was diagnosed with PTC shortly after the birth of my 5th child in June of 2016. Much to the dismay of the ENT and 2 subsequent endocrinologists, I have delayed surgery, so I still have my thyroid and I still have the cancerous tumor. I had a scan to check it this week. It is right around 3 cm (not tiny, not giant, you can see it move when I swallow). I have juiced, exercised, supplemented, done keto, done fasting, done a LOT of stuff and it’s still there. That said, Praise God, it hasn’t spread and I am still hoping to find a way to fight it and make it shrink. Testimonials like yours, Grace, help me to keep praying and keep waiting. I realize I may eventually have to get the surgery, and I can come to peace with it if there is no other way. But I am still able (Thank God) to try other ways right now. I have great energy, am in good shape, and feel like myself with no pain (all my thyroid numbers are normal, not hypo or hyper). Hope everything works out for you, kathy. If you have any success, please share.
Pamela
Can they take just one side of your thyroid? this might leave you with SOMETHING for your body to work with..
Grace
Hi Kathy
I’m currently looking at a recurrence of cancer in my lymph nodes 2.5yrs after thyroidectomy inspite of having a low TSH that is suppose to prevent recurrence “liars”. I’m almost a year of 2grains of Armour Thyroid my Endo refuses to increase my meds actually wants to reduce them. Last year I went to John Hopkins university Rheumatologist for my massive feet/leg pains since I lost my thyroid in 2016 and was diagnoised with Psoriatic Arthritis brought on by thyroidectomy and removal of Biologics prior to my thyroidectomy along with hives that had me in the emergency room and silly me but I did not realize that I had mild hives on and off since the thyroidectomy, it’s crazy dealing with all this and I often wonder when and if I will ever get my life/health back.
Have you found and alternative to surgery?
Janie Bowthorpe
Hi Grace. It’s very rare for 2 grains to be optimal. It has nothing to do with the TSH. It has to do with the free T4 and free T3. We have to fight doctors who want to lower our already too-low amounts due to the low TSH. See the top graphic as to what optimal is on this page: https://stopthethyroidmadness.com/optimal
Tina
Grace, you just described me to a T ,
Charlie Kaften
I am a thyroid cancer survivor of 45 years. I was diagnosed when I was 20 years old. They took out the whole thyroid plus 2 parathyroids back in 1973, and I also had RAI treatment of 100 rads. Been taking levothyroxine for the past 45 years—started out with a dose of 200 mcg/day, which has been reduced steadily over the years. Now I alternate 112 mcg 3x/week and 125 mcg 4x/week. I wonder if I may be the longest living survivor of thyroid cancer. Has anyone checked if there is an entry on this topic in the Guinness World Book of Records? When I tell people I have been on levothyroxine for 45 years they are startled, to say the least. I am thankful for having been able to live a very full life–despite not having a thyroid gland for most of it!!!
Adri
Hi Charlie,
Why do you say you might be the longest thyroid cancer survivor? Do ppl not normally live long without their thyroid after thyroid cancer?
Janie Bowthorpe
People live long! 🙂
Issa Decker
My complete thyroidectomy was 43 years ago (1975) for papillary cancer that had spread to 3 close lymph nodes. I was 34. The surgeon did not recommend radiation but rather removed most of the lymph nodes in my neck to stop potential spreading if there happened to be any stray cancer cells. I was lucky that this was shortly before they started prescribing T4. The only med available was Armour. Also, in spite of the cancer, my thyroid had not malfunctioned. That meant the doctor knew exactly how much thyroid replacement I needed and added extra to suppress the possibility of stimulating any stray cancer cells that might still be in my body. I was successfully on Armour for 27 years before I was finally convinced by an endocrinologist to try Levothroid, just because. Over the years my instinct had been to stay on the ndt because I was doing fine, and I generally don’t fix something that isn’t broken. Changing to T4 was a mistake. It was several years until I read Janie’s book and realized that some symptoms I had gradually developed were due to the T4. The worst were IBS and pain something similar to fibromyalgia. These problems disappeared almost immediately when back on ndt. I take NP now.
Abbie
My mother had thyroid cancer at 26. She died at the young age of 77.
Melissa
Hi
I would love some info on having no thyroid and peri menopause and menopause. I keep hearing horror stories and it’s scarung me to death. After my thyroidectomy my health has been hell. For the past 20 years. Even NDT hasn’t made a difference. My gut is never okay. My adrenals are always fatigued. Now I have copper toxicity. It just keeps getting worse. No matter what I do.
So now I’m scared of peri/ menopause.
Any info/ advice?
Thanks
Janie Bowthorpe
Treat the adrenals correctly, get the iron where it should be, then NDT will work wonderfully–years of experiences on that. In the meantime, look at being on T3-only…yet get the adrenals correctly treated and iron where it should be. It’s all do-able.
Les Hall
Hi iv had my thyroid removed as a precaution as my mother and sister got cancer in there’s .
And mine had shrunk and not working to spec..
My question is iv been on 300 thyroxine for a few years and my results have been normal according to my blood test. Is this dosage ok
I don’t think I have any side affects from this ? But would like to loose some weight.
I try to exercise where I can but the weight is killing my knees and ankles around 118kg and have been the same for years..
Janie Bowthorpe
Hi Les. Do know that forcing the body to live for conversion alone, which thyroxine forces you to do, is not a great way to treat hypothyroidism. Not opinion, but based on years of worldwide patient experiences. And even if you feel you have no problems on it, you will eventually. This page explains: https://stopthethyroidmadness.com/t4-only-meds-dont-work
And lab results have nothing to do with falling anywhere in the normal range. It’s about where they fall that has meaning. See this page: https://stopthethyroidmadness.com/lab-values
Cordelia
Hi
I have Graves disease and had a severe case of Graves Eye Disease. I had my thyroid removed 2 years ago and have been very comfortable on Levo. Thankfully I have not had any real issues. However, I have just started feeling fatigued again. It’s weird because I don’t sleep that well usually, but the last week have had some amazing long sleeps but feel very fatigued all the next day. Graves or just life? Thanks Cordelia
Janie Bowthorpe
Not Graves or life. This: https://stopthethyroidmadness/com/t4-only-meds-dont-work
Nadine Norman
Cannot open that site thank you
NoName
Hi janie
I need your opinion on something, I was diagnosed with Thyroid multinodular goiters by ACCIDENT while performing a MRI scan on my shoulder (which turned out to be elastofibroma dorsi). Went to several doctors after that,done all the blood tests they all asked for and all the doctors said that my thyroid is functioning normally ;however, when they saw the ultrasonagraphy scan they said that I need to have it removed due to the chance of it being cancerous.I didn’t even know I had a problem with my thyroid, I don’t have any trouble breathing or swallowing. Do you think I should have it removed???
P.S.: Both my mother and my older sister removed the thyroid.
Janie Bowthorpe
Hi. It’s really beyond my scope to tell you what to do about removal or not, as I’m not a doctor who saw your scan, etc. But if your situation were mine, I’d find out if a biopsy is possible to confirm cancer or not. You might even join thyroid cancer groups and see if others have had this situation. I sure hope that helps. It must feel uncomfortable for you to be in these shoes.
Blair
Yeah, for sure insist on a FNA (biopsy) before committing to a thyroidectomy. Don’t do annnnnnything before you have that done. I had multinodular goiter which was followed every 6 months for changes. The sudden appearance of a larger nodule led to my PCP sending me for a FNA. It came back inconclusive- they couldnt tell if it was cancer or not. I got referred to an oncologist, who said there was a 20% likelihood it was cancer, and gave me a couple of options: Remove the half of the thyroid with the nodule, wait for a full biopsy to be done on the removed part, and if it turned out to be cancer, have surgery again to remove the other half. Or I could just have the whole thing out. I opted for the full removal, and a couple weeks later was very much glad I did, because I did have Papillary Thyroid Cancer.
Gabby
I too had Grave’s/Hashimoto’s and thyroidectomy in 2010. It was the worst mistake of my life. I regret it every day since then whenever i take my levo. I will say this, the only way I have managed a somewhat normal life is by changing my lifestyle completely. I do not eat anything processed. NOTHING PROCESSED. No Grains No Sugar No Dairy No Alcohol. I only consume fresh vegetable juice. Organic Produce and Grass fed Pasture Raised or Wild caught protein. That is the only way i have been able to lose weight, have energy, keep my hair from falling out as well has my sanity intact. I have also eliminated Endocrine disruptors like, cheap toothpaste, microwaving in plastic, removed my metal tooth fillings, drink only RO or spring water, stopped using cheap deodorant and hygiene products. Yes this all sounds so extreme and unrealistic but, at the end of the day, it’s worth not feeling like a worthless zombie that wants to just lay somewhere and die. I have been there and prefer the above mentioned tactics. If you are reading this and still have your thyroid, please please please read up on Leaky Gut and the connection between Leaky Gut and Auto Immune disease. Then try the AIP diet for a couple of months. Then test your thyroid levels again. If you stick to the diet, YOU WILL see improvements in your thyroid health. Ok I’m done now. 🙂
Janie Bowthorpe
Glad you’re feeling a bit better! And in the meantime, why not figure out a way to get direct T3 added to that Levo, or move to Natural Desiccated Thyroid…it will be the icing on your cake…
Mel
How can I get a prescription for cytomel or NDT? Some doctors look at you as if you have 2 heads or tell you it’s nonsense. Synthroid alone is not working out for my mother but doctors won’t prescribe her anything else. And what is Armour?
KarenK
I’m a little nervous seeing all this push to take T3. I was put on T3 (Cytomel) and felt like I lost my mind. It made me extremely agitated, angry and confused. I know people who have their entire thyroid removed, for over 20 years have been only on Synthroid, and feel just fine. I had my thyroid removed almost 1.5 years ago, and feel so-so, (on .125 Synthroid) but it’s definitely better than when I had the T3. I think we are all so different in our biochemistry, that we can’t really tell if T3 will help someone or not. I’m hoping to switch to NDT, but have to find a good doctor first. And I really need to stop eating so much junk and drinking alcohol. Those are all the next steps.
Janie Bowthorpe
Sorry that this wasn’t approved sooner. The notifications I’ve been getting show nothing, so I’ve had to figure out to go in manually to see these.
First, T3 wasn’t the problem that caused your reaction. It was what the T3 was REVEALING that’s the problem. It usually means you have a cortisol problem. Read this: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me It also applies to T3 in spite of the URL.
And the reason you feel so-so is that T4 simply doesn’t do the job for a large body. Having T3 in our treatment is what does the job.but we have to have good iron and cortisol, as you found out.
Dawn
I hope you feel like yourself now. That is a lot of changes to have to make. I read your “rant”, as my story is similar, although I have not made changes to your extent, I preach!
Catherine Blick
HI, I had a partial thyroidectomy about 4 years ago due to goitres and my bloods being up and down.
I have now got nodules in the what is left of my thyroid and the scans are showing hyperthyroidism although the dr says my bloods are fine.
I have the following symptoms that are increasing over time:
Cramps, pins and needles/numbness in my hands and wrists
Palpitations, generally a low resting heart rate but at times is super high at over 100 beats per minute and i feel like there is something fluttering in my chest occassionally with a shortness of breath,
I can fall asleep and sleep deeply for a few hours then Im wide awake and cant sleep, then struggle throughout the day,
I become easily fatigued when exercising and feel like Ive done a massive workout,
I am severely overweight and struggling to loose it,
I have approx 4 loose bowel movements daily
I get confusion/foggy brain and find it hard to follow a conversation
Forgetting things people tell me, or go to shops for something and can’t remember why I am there,
Lightheadedness/diizzy,
tremors
freezing cold then get like a hot flush and boil, start sweating easily.
Can you recommend anything to talk to my Dr about?
Thanks
Janie Bowthorpe
Read this carefully because you’ll need to guide this doctor: https://stopthethyroidmadness.com/hashimotos
Get this tested…can also explain issues with numbness in hands…read it all: https://stopthethyroidmadness.com/b12
Tiffany T
Hello, I read your comment because I am in need of a total Thyroidectomy. You might want to seek a cardiologist. I am 6ft 7inc 400 pounds well over morbid obesity an have AFIB with all your symptoms daily. I was praying having the surgery would stop all of them but seeing how this is your situation I am truly doubtful, Good luck to you I hope you find care that will make things better for you.
Hadassah Gellis
Hello Janie ,
I had my Thyroids removed and was dosed on Synthroid Only . I got empowered by you and your great books and found a Dr who was willing to give me Cytomel(T3) . It was somewhat better but not great . I then found a great Dr from your sight and gave me NDT . WOW !!! What a Difference . I’m now on NDT /T4 combo and doing Great .
I would like to THANK YOU for Your Continued Educating and Encouraging and Changing thyroid patients Lives and most of all Bringing Awareness to the Public and Endo’s/Dr’s the Importance of Much Needed NDT /T3 for thyroid patients Optimal and Wellbeing . CAN’T THANK YOU ENOUGH !!! KUDOS TO YOU JANIE ….
Janie Bowthorpe
So glad for you!! 🙂
P.S. It’s honestly been proven by patients to be better to drop the T4, and just move the NDT up a bit.
Kim
About 5 years ago, I started to feel like I had a “loogie” in my throat (always worse when I lay down). After multiple trips to the doctor, they did the scope down the throat, when I woke,I was told I have GERD . I had a C.T for my headaches, and a lump was found in my neck. Then the ultrasound, and biopsy. Got a call saying that I have a goiter. Went to the ENT, he took out my “GERD/goiter” . My doctor called me the next morning, “Kim, what I removed is cancer. I need to take your thyroid “. After having the radioactive iodine twice and people telling me that if you’re going to get cancer or thyroid is the best time to get to. But they don’t have to deal with the constant worry of the loogie feeling, and the fear of being told again that oh it’s gerd or anything like that ,but knowing in the back of your mind it could be cancer again in the lymph nodes. But it’s the good cancer?!
Holly
I had hyperthyroidism in 1989 at 18 years of age. It was thought to be caused by EBV. After many years of what was called CFS, I became hypothyroid. Having said that, my TSH was low, and my free T3 was low so no doctor wanted to do anything. I had a goiter and nodules for years but by 2014, the goiter was impairing my ability to swallow. An endo said it was massive and I had testing that said hurtle cells. “Suspicious of cancer.” I was told to get it out. Right before I had it out..(this is the best)-she said to me, “You more than likely don’t have cancer.” Then why am I getting it out? This was on a Friday, on a Monday it was taken out. I went on NDT and did awful. I was unable to raise. I felt crazy. I then went on T3 only. My care has been mismanaged, no one knows what they are doing and what really happened to drive it home further was that I tried to go on T4 and I am allergic to it. I can’t take T4. At all. I itch. I developed what’s called, “Mast Cell Activation Syndrome” after having my thyroid out. I can’t take any form of T4, whether it’s natural or a compounded synthetic. I will break out in hives. I am sick and I am on 67.5 mcg of T3. I keep hearing on the forums that that is not high enough even though my Free T3 is showing that I am a 4.6 on labs. Who is right? I don’t feel any better whether I am on 60 mcg of T3 or less. I feel awful. I have to take atenolol. If I go up on the T3, my heart pounds. I have developed POTS where I can’t stand. So, I am without a thyroid and I am disabled. Totally disabled. In spite of my 4.6 number of free T3, I am so sick. My adrenals can’t handle any stress at all. I have decided to go out of business. I have my own business and I can’t function or take care of it anymore. I am on social security disability. That is how sick I am. And yes, as someone else said…you have to spend a fortune getting better because no one knows how to treat this but specialists. Who can afford Holtorf? Seriously? Their prices are insane. My days are spent in bed. I had a life before. I was a beautiful girl.
Janie Bowthorpe
Hi Holly. Very sorry what you have been going through. I bet it’s been very disheartening. In all probability, you may have acquired a cortisol problem—happens to a lot of people after that surgery. And having a cortisol issue is a reason people can’t find their optimal dose of NDT or T3, plus they continue to feel bad. Have you ordered and done a 24 hour adrenal saliva test, then treated your adrenals? That is life changing. POTS can go along with having low cortisol, report patients, and reversed by being on cortisol if saliva proves a problem. https://sttm.mymedlab.com/sttm-profiles/zrt-saliva-adrenal-4-sample–2
And what about your four iron labs? https://stopthethyroidmadness.com/iron
Marcia
I just checked my labs and I had the T3 Free and the TSH, not the T4 sorry I got confused. I see the doctor tomorrow to discuss the Fosomax. I am not too keen on taking that drug and did not want him to push back on my TSH levels being too low. T3 Free was 0.9 and the tsh was 0.010, he said my dose was okay before the bone scan, just that I needed to watch for symptoms of sweating, fast heart rate, etc. I am on 3 grains of Armour.
Janie Bowthorpe
And THAT is why you have osteoporosis. Your free T3 is MISERABLY low. And you may have high RT3 pushing the free T3 that low, too, usually due to inadequate iron, but a cortisol problem can contribute, too. https://stopthethyroidmadness.com/iron-and-cortisol
You need to get that RT3 done. See the green graphic on this page: https://stopthethyroidmadness.com/natural-thyroid-101
And if your RT3 is too high, you’ll need to read this: https://stopthethyroidmadness.com/reverse-t3
I know the above is a lot of reading, but you have to become informed.
Marcia
I have an appointment with Dr Geoffrey Bouc tomorrow to get this all sorted out. I have seen him previously about 5 years ago and he got me regulated on NDT. It is time for a return appointment.
Marcia
My thyroid journey is long and I now have an additional issue/problem. When I was born in 1951 they radiated my thymus gland, due to it being enlarged and me not doing too well. I now believe this was an experiment and I was the lab rat. In my late 20’s I developed tumors on both sides of my thyroid, 2 large ones and 2 small ones. They removed them and left the remaining thyroid. 10 years later. The tumors all grew back and the whole thyroid was tumors. All were non cancerous. The whole thyroid was removed. For about 10+years I was on various doses of Synthroid, always going up and down and the doctor only doing tsh testing. I finally got sick of feeling bad, gaining weight and having my hair shed. I found a doctor that put me on Armour and have felt much better. I have been on Armour 3 grains for about 15 years (give or take). My T4 Free is in mid range and my tsh is very low 0.010. Usually it is more in the range of .1 – .3, but this last time it was much lower. Not that it really matters since it is the tsh, since symptoms are what you monitor. Well NOW I have been diagnosed with osteoporosis. I am in a dilemma with the drug they want to put me on, which is Fosomax. I have GERD and I also have a roto scoliosis in my lower back that I am worried about it weakening. Does anyone have any suggestions? I am in good health, ride my bike everyday for 30 minutes, walk for 30 minutes and do Silver Sneakers 2 times a week. My diet could be better, I like sweets, but I am working in this. I also have gained weight in the last year, about 25 pounds. I am frustrated and getting a little depressed. Thank you for listening.
Janie Bowthorpe
Hi Marcia. Off to be diagnosed with osteoporosis yet on NDT. You mentioned Free T4 and TSH, but not free T3. What is your free T3? It’s a very important lab test.
Marcia
The doctor did not check that one. I will have to ask him for that test. I just thought not having a thyroid maybe that test was not needed. I just am bewildered to have osteoporosis in all areas, all from within 1 1/2 years from my last bone scan. Thank you for any help you can suggest.
Janie Bowthorpe
Add the RT3 to the free T3. Push, since a doctor who doesn’t test those may not be too informed.
Janie Bowthorpe
And remember, lab results have nothing to do with just falling in the normal range. Compare your results to this page: https://stopthethyroidmadness.com/lab-values
Grace
I had my thyroidectomy 14 months ago for Papillary cancer and it was the worse mistake I had ever made in my 48 yrs of life. I know this sounds harsh because at least I dont have cancer but now Im 14 months into a psoriatic arthritis flare that is just about killing me and I gained 35 pounds on top of it all I feel like a train wreck emotionally and physically and my Endocrinologist (a.k.a)the accountant loves her numbers god forbid that she sees a person on the other side of the numbers, she is my 3rd endo I fired the first 2 the (1st)endo was the messiest doctor I’ve ever seen in my life his clothing always had food on them and bill collector notes on his desk and the 2nd endo told me I was mentally ill and needed to see a therapist because I was unhappy about my weight gain and medical treatment, he never told he was bright🙊.
Patti
Check, I feel the same! Worst decision I’ve ever made by having my thyroid removed. I’ll never be the same.
CJ
I am doing a science project on The Organ Trail and my organ is the thyroid gland.One of the questions on my packet is if someone can live with a thyroid.I am confused because the article says No one can live without a thyroid but then it says people who have had it removed say it is not a comfortable state when on the meds.
Janie Bowthorpe
Hi CJ. People cannot live without a thyroid, true, and more specifically the thyroid hormones it was producing. So they are put on thyroid replacement meds. And desiccated thyroid hormones is the best, as it gives back all five hormones, not just one which too many doctors try to put their thyroid-less patients on like Synthroid or Levo.. The discomfort you read about is more about the emotional discomfort of knowing one is so totally dependent on the pills. Glad you chose thyroid as your organ to write about. 🙂
Heidi
Thanks, Janie. I’ll talk with her about NDT next time I meet with her!
Heidi
I’m really glad I found this website. I’ve been reading the STTM book and have found it very helpful so far. I’ve had TWO partial thyroidectomys! I’m so MAD my endo talked me into removing the second half of my thyroid back in 2009. (My first surgery was in 1990 when I was in college.) Now I know (since it wasn’t cancer) I could have very likely reduced the nodules and felt better with Armor thyroid. But, I can’t change the past, so now that I’ve been on Levothyroxine for 8 years, and have never felt ‘right’, I am headed in the right direction since I found a new doctor who uses innovative medicine like natural thyroid replacement (she told me to read the STTM book!). I’ve only seen my new doctor once, and that was 4 days ago, but she started me on a T3 only medication and Progesterone. Going to start slow and find out what my body responds to. I can’t wait for the next month or so to pass so I can determine its effectiveness. I do wonder why she didn’t just start me on Armor? She said since I don’t have a thyroid there’s no point in me taking T4. Maybe some of you can address this for me, those of you without your thyroid, and to lend any advice with your experience. Thanks, Janie, for your book and this website. I feel like it’s a life saver.
Janie Bowthorpe
THAT IS FALSE. Those without a thyroid want all five hormones even more!! And do know that there are many great brands of NDT: https://stopthethyroidmadness.com/options-for-thyroid-treatment
NoName
I am 7 years thyroidless. I had to have it removed due to cancer and had RAI once. I don’t recall the period after the RAI, trying to adjust the dose of Levothyroxine. I know I have been very tired and fall asleep early every night, naps are my favorite. I am not sure if there can be any effects of long term on that medication, but have been very tired in the past 2 years. My TSH was usually kept lower than one and after my second pregnancy they had trouble adjusting my dose. I am now back to my old dose but my TSH is around 1. This is supposed to be good but I feel really fatigued, body is cracking and popping, I wake up stiff, weak. I am always sleepy. My mood is either depressed or anxious. I checked my TSH 3 months ago and it was 1 again. This sounds perfect but I am not. I recently read that with papilliary cancer they do not recommend to remove the thyroid but to watch what happens. I am not sure what is better but no thyroid is no walk in the park. Before my TT I had an ovary removed too. I have only one. My body feels broken. I feel broken. I am clueless what to do. I just follow my doctors recommendations and they seem to always say: you are fine!
Janie Bowthorpe
Hi NoName. I am so sorry that you feel so broken. 🙁 We have been there, having doctors say we are fine, simply based on a pituitary hormone lab result and a very awful range. I went through that nearly 20 years while getting worse and worse. Here’s where to start…learn why you feel so bad here: https://stopthethyroidmadness.com/t4-only-meds-dont-work When reading that, you’ll see a link to a much better thyroid med and how patients have learned to use it (which by the way, isn’t about using the lousy TSH lab test). It is life-changing once you learn it all, and you’ll need push your doctor for what is right for you. Some have to find more open-minded doctors, but we still have to guide them, NoName. So learn from STTM!
Bob T
Hi NoName,
I also had many extreme issues with Levo (Synthroid), and also had my Thyroid removed due to cancer. I had a list of side effects including heart issues (arrythmia and tachycardia) – 4 trips to the ER in 10 days and doctors told me it had nothing to do with the Synthroid, although 4 days before removing my Thyroid I was on a 17km hike… I also had mental fatigue, anxiety, diarrhea, brain fog, felt “tired but wired” (like I drank 100 cups of coffee constantly), I went days without sleeping, dry skin and hair, and lots more. I was experiencing symptoms of both hypo and hyper thyroid, and the doctors were telling me it was all in my head. I felt like I was going off the deep end, and no one would listen. My heart was so bad my heart rate would jump from the 60’s sitting on the couch up to 140 or 150 just walking to the kitchen sink to get a glass of water. The doctors were telling that this was normal, or it was anxiety. This is not normal!
When they tried Cytomel, most of the issues went away, except for the “tired but wired” feeling, and my feet started to swell up within about 10 days. After a month or 2 I could barely walk. 9 months later they tried Eltroxin. All the symptoms I had with Synthroid came back.
Now I am finally on NDT, slowly increasing the dose. I am starting to see the light. I have yet to talk my doctor into testing my reverse T3, and have sent in my own cortisol test I purchased, so when I get the results back I will take them with me also to my next appointment in November.
I know people personally who have had their thyroid removed and have been on Levo for years without issues, but I cannot believe that the doctors would not believe me when I was experiencing the symptoms I did. You have to fight for yourself and bring as much ammo with you to your doctor appointments as you can get your hands on.
If you are like me and are experiencing “brain fog”, it really helps to print some of the info on these pages out for reference when you go to see your doctor, or better yet, get the book (I did, it really helps). And no, I do not get commissions… (LOL).
Janie Bowthorpe
Good info, Bob!! And you know what has come to light over the years?? That even those who feel they are just fine on T4-only/Levo….aren’t in some areas. They do have symptoms of a poor treatment they just live with, or don’t understand are connected. Or they eventually get much worse.
Nancy
I had my thyroid removed in 2007 due to Hashimotos and other autoimmune deficiencies. I weighed about 170 at 5’9″. I am now at 216!! I have never weighed so much in my life!! About 5 months ago my Endo that I have been going to ever since I had my thyroid removed and told me so many times that he is doing his job and I am gaining weight because I am getting “older” and I am a woman and may be going into menopause. I just turned 50!! Anyway, he said that my “levels” were high and he needed to reduce my synthroid dose. Ever since he did that, I have gained an additional 20 lbs!! I know we all say this and it is SO true, I walk every day, drink protein smoothies with kale, egg protein and berries, tons of water… I have cut everything I consume in half for the past two months! I continue to gain weight, am tired all the time, thirsty like no tomorrow,dry skin, significant joint pain, digestive issues etc.. This is the most frustrating quality of life and those of us thyroidless can ALL attest!! Any advice would be SO appreciated!!
Janie Bowthorpe
This is your problem: https://stopthethyroidmadness.com/t4-only-meds-dont-work
Nancy
Thank you! I find this information so interesting!
I went to see my primary care doc last night and she warned me against the combination thyroid meds as well as going to a new endo. She said my numbers are exactly where they should be and I have had so many blood tests done, there are no more to do. She said “Only T4 is needed” and my numbers are “normal.” Now I am confused. She said she thinks that the idea of combination med is dangerous! And yes, she said I need to “watch what I eat, small meals several times a day, weight train and drink more water.” Now I am frustrated! I am tempted to start taking weight loss supplements just to get some of this weight off!!
Janie Bowthorpe
Your doctor is exactly why the Stop the Thyroid Madness movement started in the first place! Study this: https://stopthethyroidmadness.com/t4-only-meds-dont-work
Bob T
I would try a new ENT, and a new GP.
I had my thyroid removed due to plapillary cancer. I wish now I had not let them remove it.
http://www.ctvnews.ca/health/many-thyroid-cases-overtreated-report-concludes-1.3038648#_gus&_gucid=&_gup=Facebook&_gsc=8Wwy2wb
I find a lot of good information on this site, but am still a work in progress and am on my 3rd ENT, and am starting to feel a little better now that I am finally on NDT (small dose, slowly increasing).
I had terrible issues when they gave me Synthroid, Not quite as bod on Cytomel, but my feet were so swollen I could not walk. They then gave me Eltroxin (basically same as Synthroid) which put me back to square 1. Finally, I some how managed to talk them into trying NDT.
Get you T4, T3, reverse T3 checked and use the info from this site to take with you to your doctor (a copy of the book helped me as I could not remember much with out a reference). My opinion is that most doctors have no idea what they are talking about when it comes to the Thyroid and it’s related hormones.
Janie Bowthorpe
Glad you got on NDT! Yes, we all raise until we find our optimal dose based on symptom relief, the free’s, temperature, etc.
Free T3 and free T4, by the way, not just T3 and T4. The latter are totals which tell us nothing; the free in front tells us what is unbound and available for use. 🙂
Nameless
I found a lump in my neck about 10 months ago. I’ve had several test done including a biopsy. The biopsy came back negative for cancer. I have been experiencing problems swallowing, getting hoarse, sore throat, and difficulty with breathing. So I told my doctor and she sent me to a specialist. The specialist did another ultrasound and she found that the nodules in my thyroid has rapidly grown like 3 times bigger and new nodules has also developed since my last ultrasound 6 months ago. The nodules are in the middle of the thyroid and in the left and right lives. The doctor said they are pushing against my windpipe and swallowing tube. Do you think it’s a good idea to have my thyroid removed? I really need advice. I’m scheduled to have it removed in September.
Janie Bowthorpe
I am honestly not in a position to tell you what to do. But I can tell you that, yes, some have had their thyroid removed when it has gone on long enough to cause problems. Others do this instead: https://stopthethyroidmadness.com/2014/08/02/case-missing-thyroid-nodules/
sarah
I had RAI a year and a half ago…when I as given the rai I was a month pregnant, and even though I was given 2 pregnancy tests before hand, they gave the stuff to me. Thank goodness my baby boy is perfectly healthy, and thank goodness I am alive. So many blessings! My problem though is that my endo treats me like I’m stupid, she acts as though she has no time for me, never gives me any info, treats me like a child when I ask questions, and scolds me when I bring up info that I found on the internet.
When she ordered the RAI, I asked her why, and what my diagnoses was. So far all I knew was that I was hyperthyroid. Frustrated, she answered, “Hashimotos, Graves, whatever.” and claimed that my anti thyroid meds just weren’t working. She didn’t tell me anything about the procedure, simply scared me into it, so here I am wondering if I even needed it before trying…I dunno, anything. She left me thinking I had no options, and maybe I didn’t.
Now the last time I saw her I explained that I has feeling crappy, tired, listless, generally just exhausted along with the obvious weight gain, and mentioned that people online were talking about T3 supplements. (currently on 125 mcg. Levothyroxine) She laughed and said, “Well since you did your RESEARCH I’m sure you KNOW you have no thyroid so you don’t make T3 anymore, so you don’t need it. I check your levels every time.” well…okay…am I missing something? Uneducated as I am on the topic, and as skeptical as I am to believe everything on the internet, I can’t help but think my endo is giving me false information almost all of the time. Graves and Hashimotos are two different ends of the spectrum, right?
I’m seriously considering seeing another endo, however they are all so far away, and I’m not sure if she’s even wrong. Really wish I had another source of information than a specialist that doesn’t tell me anything, and google.
Janie Bowthorpe
I would personally run from that Endo as fast as I could and never, ever look back. https://stopthethyroidmadness.com/how-to-find-a-good-doc And NDT seems to give the best results: https://stopthethyroidmadness.com/natural-thyroid-101
Faith
I’am so glad I found this, learned so much. 6 years ago I had my thyroid removed, (not due to cancer,) I had a goiter, one side of my tyroid was not working the other was getting just as bad. (5 females in my family, three have thyroid problems). I have learned a lot from all of you and will past it on.
Jill
Hello everyone !
I am a 24 year old, living without a thyroid for 4 years.
I had a total thyroid-dectomy because of Graves’ disease, thyroid storm and heart failure. ( although I was sick, as in my life in danger sick……… I’d didn’t feel nowhere near how I feel now)
– severely anemic have gotten a blood transfusion 2 years ago and just recently on iron infusions
– nearly bald
– weight gain of 40+ (since surgery)
-no energy
-fatigue
– moody
-easily angered
-always cold
-always napping
– undereyes have giant puff bags
– muscle &joint weakness
– randomn episodes of crashing. As in need to go into bed , about to pass out and sleep
But worst of all is the brain fog ! Some people think I’m weird because, I of slow reaction and thinking responses. I work SO hard to think! It’s like when I’m trying to talk , I completely forget about what I’m going to say mid sentence .
It’s horrible !
After 3 years of two endo’s giving me at synthyroid/cytomel. I have finally found one who prescribes me amour. He recently just amped me from 90&15 mcg to now 120. I feel a bit better, not much…… It could be the recent iron infusion as well. I try to tell him to treat me according to my symptoms but he insists my labs are normal and completely dismisses me.
I’m new at this, and completely overwhelmed with the information
Can someone point in the right direction
I’d really appreciate some insight, I feel as failure as mother of two small children. My sickness affects my family life so much.
Kristine
Jill, if you haven’t already, please go to the Facebook groups FTPO (For people without a Thyroid) https://www.facebook.com/groups/FTPOWithoutAThyroid/ and also the Thyroidectomy group https://www.facebook.com/groups/FTPOThyca/, which is really supportive. You will get a lot of information from some beautiful people who have gone through the same as you, and many of us are still struggling every single day. I have myself just changed for NDT (TT 6 months ago) , it’s hard but I feel the changes. I hope you find help and the most important thing is that you read up on your condition so that when you talk to your doctor, you are empowered and can ask for the right tests and get some real help!!! good luck!
Teresita Edna Munsayac
I am 71 years old, my thyroid was removed Jan 6, 2016 and taking levothrovine 1mg in the morning, I noticed having headache and constipation, but eating pineapple help, also I’m diabetic and insulin user, my dosage went up from 8 units 3x a day now its 15 units, I’ll see my doctor next week Jan 16, 2016 and will update you guys, so happy and I know this blog will be a great help.
Hadassah
Janie , do we as thyroidless need to supplement with “iodine” ? In my Multi vit . I have 200 mcg as potassium iodide . Should I add more ? I heard a lot about Iodral but don’t know if I need more ? I did have myself tested by “Hakala” and I excreted in 24 hrs . 61% . as of Nov . 20015 .
Janie Bowthorpe
Iodine benefits many parts of your body!
Hadassah
Janie , “Liothyronine” is that the same as “cytomel” ? And how long should I wait to take calcium and iron ? And since I started 5 days ago should I cut the pill in half and take half first thing in the morning and second half later only because I don’t want to get palpitations ? I would like to do it slowly but surely . Thank you for all you do for me and others. Words can not express my appreciation .
Janie Bowthorpe
Yes, they are the same…both meaning T3, though Cytomel is just the brand name of T3, not the offical name for T3. We are guessing to wait at least a few hours before or after T3 if you need to take calcium or iron pills. There are all sorts of opinion out there, but as long as we are not taking them at the same time, we’re good. Most patients take T3 approximately 4 hours apart and during the daytime hours, but it’s individual.
Hadassah
Janie , I’m very GREATFUL to you for empowering me and pushing me to beg the DR to at least add for me cytomel . I’m on synthroid 100mcg . He gave me 5mcg cytomel . I take synthroid at night before sleep sublingually. And wanted to know in the morning if I can sublingually take cytomel ? And How much later can I eat and take vitamins ? I take lots of vitamins . I wanted you to know how MUCH BETTER I FEEL . I THANK YOU !!!!!!!!!!!! (THYROIDLESS)
Janie Bowthorpe
Lots of people do their Cytomel sublingually, yes. All we avoid at the same time is calcium, iron and estrogen–they will bind some of the T3, though not all. Other food really doesn’t. Hooray that you feel better!! And do know that most patients report having to take much more than 5 mcg over time, and they take it 2-3 times a day. You’ll eventually figure that out.
Tammie
I was recently diagnosed with thyroid cancer and my endo immediately recommended a thyroidectomy. He made me feel as though that is the only reasonable solution and I would be fine for the rest of my life as long as I take meds. I really appreciate all of you who are open and honest about your struggles. I am still trying to make a decision but I am not sure what I should do.
Bernice
Tammie. What was the outcome?
Katie
I wasdiagnosed with HYPERTHYROIDISM AND GRAVES about 15 montha ago. I lost 50_60 pounds…then I hospitalized with extreme toxic thyroid for 8 days and bed ridden for 2 month! With the toxicity I lost another 20 pounds and was near death. Theh put mr on methamazol for6 months. I gained back 50 ppounds, my eyes were effected (one big, lme little), along with hallucinations and vomiting. ..horrrid! Before mysurgery on the metamazol I gained 60 pounds, no.energy, emotional problems and aging problems! !! Finalyrhad my surgery in June of 2014.. My endo put me on 100 mg of levothyroxine!! Lol still no energy nor sleep along with weight gain!/!? Why. Call me crazy but I went a week without my levo amd lost 7 pound. Im.waiting to see another endo and havent picked up my lebo hormones in a month. Hmmmm I have went down 2 pant sizes and lost 16 pounfs.. o did I mention I have incredible energy! !! So scared to get back on the hormones. But I have been told I need it???? But im freaked. I finally feel great! Im on lexapro and nerve meds. Dont know whay to do. I will catch up after new Dr. Apt.
Karen
ps. I was also told I was estrogen dominate
Karen
Janie thank you for your reply. I’m confused. Do you think 90ml is too small of Armour? My latest blood test was TSH .12, T4 1.1, T3 4.2 TPO 25. Did self adrenal test Ex: bloodpressure, and flashlight in mirror. All normal. Blood test says iron normal. Within past six months also have been sweating profusely usually from the neck up. My doctor says its from my weight gain. I’m a speptic. I have done so much research on which way I should eat while thyroidless to lose weight. I have tried Paleo, but had to give myself weekly enemas due to constipation even though I take magnesium. I have done calorie counting to no avail. This has all changed within the past six months. Nothing has been different in my life. Before that I was able to lose weight. I am so depressed right now. I have worked so hard dieting and exercising. Doctor says carbs are toxic to me. (just guessing) The only thing I can think of is 7 months ago I had a Nissen Fundilacation. Proceedure to stop acid reflux done at Mayo clinic, but I have lost some weight since then within the first month. Monday I go to a new doctor. He’s a homeopathic doc. This is my 5th doctor. He will have my new blood results then.. My old doc says to stop exercising because she’s guessing my adrenas are fatigued, the new doc says its not my adrenals because I have lots of energy so I should still exercise. Any suggestions. Also what did you mean that it may have come back to bite me. Please explain. Thank you so much for your help . Karen
Karen
Im 61, had thyroid removed 2 years ago. Have good nurse practicioner ( I think). Been on armour 90ml for years. T3 is 4..0, tsh very suppressed. I feel great except. I was able to lose weight by calorie counting just 5 months ago, then all of a sudden I have gained 55lbs in 4 months. A month ago I started calorie counting again. 1200 calories and walk on treadmill 40 minutes 7 days a week at high speed and #4 incline. Nothing. No weight loss at all. I’m so depressed over this. Any suggestions? Also I am sweating profusely all the time from the neck up. Am post menopausal.
Janie Bowthorpe
Karen, believe it or not, 90 mg is hardly ever an optimal dose, and it may have come back to bite you in the behind…or your low estrogen is the culprit for the weight gain, which is common after meno. But I would explore your adrenals and iron. For adrenals, you need to do the Discovery Steps in Chapter 5 of the revised STTM. The four iron labs are here: https://stopthethyroidmadness.com/ferritin
Monica C
Thank you so much Janie for responding. Yes she ALWAYS looks at my lab values and doesn’t really listen much to me about my symptoms. Ugh! I can’t wait to see her reaction when I ask for the saliva test – it ought to be interesting that’s for sure.
Thanks again. And I’m going to read the suggested links.
Janie Bowthorpe
Remember that you can order your own labs, especially saliva for cortisol! https://stopthethyroidmadness.com/recommended-labwork And don’t let her do blood cortisol. Useless.
Monica C
Hi. I’m thyroidless for 3 years now (they saw pre cancerous cells but it wasn’t cancer just one of the biggest thyroids they had ever seen) my question is this. My Dr has me on 2 and 1/4 grains of Armour daily. My labs show that I’m “hyperthyroid” hahaha! As if! I’m still at least 50 pounds overweight with it allll in my stomach and face my hair is wiry, frizzy and just a hot mess(so not normal)I have absolutely no appetite but cannot loose the weight and I am tired all the time, cranky, no period for 3 years(I just turned 46) low back pain, NO sex drive, mild headaches just about daily, hair growing in places that is not normal for a female in my opinion(except my eyebrows- they look ridiculous) sweat like a pig on a daily basis and brain fog that is insane. So my question is this: should I have my adrenals tested? About 2 years ago I was able to convince my Dr to test for Rt3 as I was concerned – after listening to her PA tell me that they only do that for people who are on their deathbed in the hospital and that since I didn’t EVEN have a thyroid that it was useless to test me! Rt3 was 17.
The ratio of ft3 to rt3 was 16.5. Info I had read said it should be 20 or higher(the ratio). At that time I was only on 2 grains of Armour so after much fussing and fit pitching by me to please add cytomel – she refused and added the 1/4 grain of Armour. I have just been going thru the motions as she once said well you’re not getting younger girl – to which I said oh wow well I guess I don’t consider myself old. I mean if this is as good as I can feel then my life is gonna be nothing but misery until I die.
I just want to thank anyone who reads this and can give me some advice on whether I should test my adrenals even tho I don’t have a thyroid.
Thanks so much,
Monica
Janie Bowthorpe
Monica, I’m going to bet that you are saying “hyper” because you and your doc are going by the low TSH…and you have to IGNORE that TSH nor does it mean you are “hyper”. See https://stopthethyroidmadness.com/tsh-why-its-useless
Instead, you are probably still UNDERDOSING yourself. Read https://stopthethyroidmadness.com/natural-thyroid-101
And yes, sounds like you might want to order and do a 24 hour adrenal saliva test. I would also add an aldosterone test–the excessive sweating implies you have low aldosterone. See https://stopthethyroidmadness.com/adrenal-info
Christy
I have a big knot on my neck that has been there for years finally after insisting something is in my throat and difficulty swallowing a ultra sound showed a nodule on my thyroid. Can this knot in my neck be related?
Janie Bowthorpe
It could be. And nodules like you are describing are usually seen with Hashimoto’s or just plain hypothyroid. Cancer is more rare. See https://stopthethyroidmadness.com/hashimotos
Dimitri
Well, I’ve been living without a thyroid gland for 38 yrs and 7 months minus 1 day now…. I was born without it… There are still days I curse Nature.
Bonnie Campbell-Schmelzer
Similar to Sandy, I was only to have the left lobe removed due to rapid growing tumors. Once they opened me up, they found more on the right lobe, connective tissue, and 11 suspicious lymph nodes and all were removed. It had taken me over three years arguing with doctors that something was wrong. I’m small framed, never weighed over 102 lbs, and kept gaining weight, even without eating anything. I’m now at a dangerous 169 lbs and climbing! I’ve tried all sorts of expensive “physician monitored” programs. One RN accused me of lying on what I ate. (Talk about not only being unprofessional, but pushing someone into depression!) So, their physician recommend I find out why my metabolism was near nonexistent, and I did. Since my labs were “border normal” one doctor who’d I’d known and worked with for years, told me she could find nothing wrong and could recommend a good psychologist for me! (I did go to one who told me my problems were definitely medical and I was the most sane, stable patient he’d had in a long time. He told me that I needed to fight to find a doctor who knew what they were doing.) I kept going to doctors until I found one who actually listened to me. That’s how I found out I definitely have Hashimoto’s, Metabolic Syndrome, Renaud’s…and now have developed “Non Mutation Hemochromatosis” with NO explanation yet. They haven’t been able to get my thyroid levels correct for over seven years now. I feel I just keep developing more medical conditions that are addressed like band aides on a giant burn. How can I find out the underlying cause of all this before more pre-cancer turns into cancer? I’m now seeing a Hematologist Oncologist, but don’t feel I’m getting anywhere close to answers. I have to have my blood drained every four weeks – another band aide. I feel sick all the time and actually crashed last phlebotomy and had to have IV to get my bp up and my vitals stable. Again, they don’t know why my body reacted that way. I know this is a lot of info, but I read your articles and need a sane opinion which direction I can take my health care in. Suggestions?
Janie Bowthorpe
Bonnie, so sorry to read what you are going through!!! You didn’t mention thyroid meds, but patients simply do a LOT better with natural desiccated thyroid and NOT dosing by the TSH. If you let any of those doctors dose you by either of the latter, you stay hypo, we’ve learned over and over. With Hashi’s, you have to get the antibodies down, as well. Here’s where you’ll find a list of great patient groups for feedback: https://stopthethyroidmadness.com/talk-to-others
Janie Bowthorpe
I neglected to add—sounds like you would benefit from genetic testing. Read https://stopthethyroidmadness.com/mthfr
Bonnie Campbell-Schmelzer
Thank you, Janie. The meds have changed constantly. Forced on Synthroid, but demanded to try something else. Tried Liothyronine, T3 mixology, Cytomel, now Armour. Levels are up and because they go by labs, not how I feel. They can’t seem to find the correct formula yet. So I’m researching it for myself since they told me I may just have to live with it. (Really? I’d like to see them settle for that answer if it were themselves!) I’ve also had the genetic testing and it is not hereditary Hemochromatosis. They don’t know why I developed it and won’t give more info except it may be caused by underlying cancer or disease they haven’t detected. Thank you for the info. I will look into it. Thank you for having this site.
Janie Bowthorpe
The MTHFR mutation can cause the high iron. That’s why you need fuller genetic testing that is mentioned on the MTHFR page I sent.
gail joss
Hi.would appreciate advice please.have had graves 17 years.four months ago,crashed completely with thyrotoxicosis.was on ptu and then weaned off because there was a slight improvementin my blood work.have hardly moved in four months im so exhausted.used to do physical work and an average day was 18 hours.now im proud if i get dressed.was told last week my bones are being affected and a new nodule that looks like cancer.my blood results are worse than four months ago.feel like im being steamrollered into surgery.all they see are their results and not a human being.really have no clue what im supposed to do.
Janie Bowthorpe
Gail, sorry to read what you are going through. Have you checked Elaine Moore’s website? She’s a great advocate for Graves. I’d also look into Low Dose Naltrexone for Graves.
Sandy
6 mos. ago both right & left thyroid were taken out due to thyroid cancer. Full body scan found no cancer anywhere else but have gained almost 20 lbs. and i barely eat anything. i dont eat junk food, i love salads but an average salad can put 2 lbs on. Im on 150 levothtroxine but always feeling depressed, fatigued, insomnia, sensitive emotions, no appetite, yet i still gain weight…is there a book that will help me find a way to lose weight and keep it under control. Exercise does absolutely nothing.
Janie Bowthorpe
Sandy, so sorry you had thyroid cancer but happy to read it’s gone. 🙂 Many patients will tell you that your problems are from being on levothyroxine, which is T4-only, yet a healthy thyroid makes five hormones. Patients on T4-only have reported depression, feeling fatigued, gaining weight etc. So the STTM book will help educate you on how to make the right changes in your thyroid treatment, which in turn can help the issues you stated: http://www.laughinggrapepublishing.com
Migdalia Pagan
Janie do I have to print and mail this form to you?
Janie Bowthorpe
Hi. Not sure what you mean? What form?
Christa
I too had my thyroid removed. No radiation needed.A nodule was found in my neck;had a needle biopsy and was scoped.About 3 months before this I was diagnosed with Hashimottos. Well,the surgeon said the nodule was cancer and removed my whole thyroid and reported there was no cancer in the glands or parathyroids.
The first three months I was on 1.25 mcg Synthroid and felt great, but my numbers were too low; so my endo up it to 1.75 mcg. And it liked to kill me. I had symptoms of a stroke, incredible muscle and joint stiffness,could barely walk, and could not hardly get out of bed. I had no dexterity in my hands, could not lift my arms,and became exhausted very quickly.
I have had every test one could think and all were normal. The endo told me to see my PC physican. So he has been trying to adjust my synthroid by how I am feeling. Things are still bad. So he has now switched me to Armour and I am slowly starting to heal. I have been unable to work since March. I am 55 years old and always active.
I’m hoping we will get the right dosage and I can get back to my old self.
I have also learned it is not unusal for someone with Hashimotos to get non-cancerous nodules on their thyroid.
My advice to anyone is think long and hard before agreeing to have your thyroid removed.
Suanna
So by now I am certain that I’d better try other options before the surgical removal of my thyroid. How do I do that after I informed my self and refused the -old way- cut, burn and expect nightmares…I go back to my family doctor and talk to her about the tests that would need to be done so she would afterward be willing to prescribe something or I look for a naturophat ?? Yes I am diagnosed with papillary thyroid cancer after ultrasound and needle biopsy ( both doctors the otoralyngologist and his friend dr oncologist turned me down for more tests, MRI, pet scan, ADDITIONAL BLOODWORK because it is not necessary to determine if the TC spread elsewhere ) and now I don’t know where to go for an alternative treatment… 🙁
(From Janie: get more feedback from Stephanie Buist of http://naturalthyroidchoices.com/ )
Eileen Corrado
just wondering how I find a good doc for treating hypothyroidism. I have been on meds for nearly 3 years. I still feel very lousy, tired and muscle aches. weight gain, hair loss, headaches (have no idea if that is related) Reading posts on this site and having heard of natural treatments for hypothyroidism. I am very interested in finding out more and seeing if I can find a physician in my area. It is a frustrating disease and I work and have 4 kids, I just get completely worn out. Thanks you for your time
(From Janie: https://stopthethyroidmadness.com/how-to-find-a-good-doc )
Soni
I was forced by my endo to have RAI done for graves disease almost 2 years ago.
Since then ive been on Levothyroxine (T4) and have gained about 15kg.
I work out every day with a trainer aswell as doing cardio by myself. I recently took a week off work doing exercise for 5 hours a day for 6 days and have managed to lose a total of zilch. I feel so frustrated and totally regret ever having done RAI. My doctors in the uk refuse to put me on anything but T4. I have now ordered Cytomel from an online website and was wondering if anyone here had experienced weight loss with this?
Amy
Soni,
I feel your frustration. I had my RAI 12 years ago and have been trying to loose weight for about 6 years without success. I switched to armour 3 (?) years ago. My thyroid seems to be improving and now I’m pretty certain that my hormones and adrenals are out of whack. It is a long journey, full of a lot of disappointment and frustration. I would see a new doctor. Here in USA, I have to drive and hour and a half to see someone who will prescribe armour, prometrium and a rt3 compound and she doesn’t take insurance. If you can’t find a doctor a homeopath may be a good place to start. I’m very activate taking high intensity gym classes play soccer and lacrosse, i sure don’t look or feel like in do. Don’t give up!
Amy
LindaD
Yes, TgAb is thyroglobulin antibodies. 🙂
If you are positive for TgAb, then your Tg will not be a reliable tumor marker for thyca. 🙁
Linda
Abigail
I have tested positive for TPO antibodies. I will request a TG antibodies on my next blood draw. Is that thyroglobulin antibodies?
Linda
Hi Abigail,
Yes adrenals need to be supported well so you can tolerate the T3. Perhaps you need more HC? Are you on any of the support groups?
http://www.stopthethyroidmadness.com/talk-to-others
Since you are hypo now, it is the optimal time to check your Tg. A scan before a year out from a treatment dose of RAI has the potential to make you RAI resistant. A good radiologist will know that it can take up to a year for old cancer cells to die off. There is so much in that sentence that probably is not clear to you and it is hard to discuss in this format. Ask Janie for my email adress if you want to discuss this further.
Alyce
Dear Abigail,
Yes, It does get better over time. I had mine out at 24 and am now 42. I too HATE doing scans! They stress me out so much. I finally had to take an Ativan before hand because I would lie there on the table sobbing like a baby.
I too find myself wanting to block out the whole cancer thing. I mostly focus on working toward feeling good. After being on Synthroid for 15 years and not knowing why I felt so bad. My brother in law told me about natural thyroid medications and it’s been life-changing. I can’t speak highly enough about how much better I feel on them.
It’s very important to find a doctor who is willing to make recommendations based on how you feel not just what your labs say. It took a long time to find her but it’s been well worth it. With the help of a good doctor, I’m feeling on top of the world.
Best of luck to you in the future.
Abigail
Linda, thank you for posting. My doc seems aggressive. Possibly because it was stage 3 cancer?
He said that because of my young age I will get the most aggressive treatment so as to avoid recurrence. So I got one dose of 150 radioactive iodine in June 2009.
I don’t want to go for scans at all. I hate them. I hate thinking of thyroid cancer. I just want to get my energy back and move on.
Has anyone ever felt ‘back to normal’ after removal of thyroid? Depends if adrenal fatigue is an issue?
Linda
Abigail, Since it has not been a year out from your RAI, a body scan will not tell you anything at this point. It can take up to a year for the old cancer cells to die off. What would be prudent however, is an unsuppressed (hypo) Tg with TgAb. If you have no antibodies and your Tg is not rising, that is good. I am a 44 year thyroid cancer survivor who never scanned more frequently than yearly. You are doing the right things. You can read more here: http://www.naturalthyroidchoices.com/ThyroidNutrients.html
Abigail
I also want to mention, when I was on synthroid, I had symptoms I used to have while on gluten. I checked out synthroid’s ingredients and gluten was not listed. Yet my endo at the time said it does contain small amounts of gluten. He tested my blood for antigliadin antibodies and transglutaminase antibodies and indeed they were mildly elevated due to the small amount of gluten in the synthroid. So he gave me levoxyl instead. Same crap. A short time later I fired this endo for refusing to recognize my adrenal fatigue and for refusing to give me cytomel, and for telling me my bloodwork and ACTH were fine, when the laboratory personnel indicated my levels were NOT fine.
Abigail
Thank you for the link to the blog! I had no clue there was an alternative to surgery for removal of metastisized thyroid cancer. What would have been the alternative?
I had surgery less than a year ago and treatment with synthoid left me feeling horrid. My doc refused to give me anything else, so I switched to an ND. The ND gave me cytomel (when I asked for armour he said let’s first figure out how much cytomel works for you- on top of the synthroid- and then we’ll do the conversion from cytome/synthoid to armour)
Then I tested myself for RT3 and it was high. So I got myself onto cytomel-only treatment.
As I cannot raise too much cytomel at a time (my cortisol reserves are low, and I’m working on that, taking HC) I’m underdosed on cytomel-only treatment, until I bring my dose up to adequate levels.
Now my TSH is above 40 and surely a good time to do another iodine-uptake body scan 🙂
TSH is supposed to be suppressed, they say. I wonder if they’re right. At this point I don’t know what to believe.
With a high TSH, they say, any remaining thyroid cancer cells can reproduce.
So how does one treat thyroid cancer naturally?
I’m gluten free, sugar free, dairy free, taking 35 mg. cortef, and fludrocortisone for low aldosterone, and cytomel.
Yes indeed, I have learned the hard way to finally put myself on top of the list of priorities.
Sandra
Oh I forgot to mention that if you are trying to figure out is you should let them take your thyroid and put you on synthetic thyroid hormone you had better be prepared to spend thousands of dollars on naturopathic doctors who will look for every other thing to be the problem with your health and not your thyroid. Prior to finding this site only 6 months ago I have spent the last 4 years going to 6 different naturopaths and have exhaused our savings.
Sandra
Yesterday I read Stephanie’s page and even though I know what I know about why I feel the way I do (still on synthetic since 1994) with the blessing of this site and thyroidless group, I felt so relieved that she put it into words what this journey is all about, it somehow felt like a good friend putting their arms around me and saying, it’s ok Sandra, I understand, you have a right to be pissed and hate what is done.
I was a body builder for 10 years and an avid health nut. I even wanted to be a police woman but didn’t pass some of the tests (pre cancer). Now I am lucky to get 4 days of walking 30 minutes in without feeling drained and done in. When I switched careers from trucking to a kitchen designer without any experience 6 years ago I was so confident and positive. Now I have loads of experience and doubt myself all the time!
But here is the big one for me. I always, always thought I would have children. I am now 46 and met my one and only hubby 10 years ago. I wasn’t in a rush then at 36 , I was feeling ok and thought we can enjoy the relationship for a bit, but then…… it all went down hill slowly. The thought of staying up at night with a newborn scared the beep out of me.
I too had RAI and suffer from serious multiple food sensitivities, candida, and all the symptoms that go with that. I work full time and have to make all my food that is gluten, dairy and sugar free and rotate all my foods every four days . I can’t even enjoy a treat over christmas as the sugar makes me crash and burn.
I wish that everyone who is searching for answers does not doubt one fact on STTM, does not doubt what these wonderful woman and men are saying and does not put their faith in their MD or even their natural doctors if they tell them anything differently.
Is it me or is it a coincidence that all these incredible, caring souls who have dedicated their lives to this cause also are the ones who have thyroid disease, cancer etc. Perhaps it has been said before, but do we all share a common trait that we have not always put ourselves first in a healthy way. I know for myself that is the case and it is one part of this journey that has taught me when to say NO because now I now have no choice. It is a very tough way to learn this lesson but I do get it and now I am thankful to not feel guilty a little less.
I have the ups and downs and today is an up day, so I don’t mean to deny all the pain that is there but I guess the spiritual believer in me believes that I will get better and I will have my life back even if it is not in the way that I always dreamed, just different.
Mary McCartney
I have been diagnosed with Graves disease a year ago . My endo Dr said that if my levels are not better by mid Fen 2018 I will need RAI. Plase. What are my options???
Enrique
I had my thyroid ‘nuked’ 18 years ago and I will always regret it. If only I had the information I have today back then… I took Synthroid after that until 2 months ago when iI switched to T3 only therapy to get rid of my elevated RT3. It has been tough switching from Synthroid to T3 only but I’m hanging in there. In 1998 I weighed close to 300 pounds and switched to a raw vegan diet and went down to 170 pounds. My doc then cut my Synthroid dose in half based on my enormous weight loss. Between 1998 and now my weight fluctuated between 180-200 pounds. This year it finally caught up with me that all those years on Synthroid have affected my adrenals and created a high reverse T3 problem which I am now trying to correct. I also found out my vitamin D3 was almost zero! I’m so thankful for this great web site and Janie’s book. Hopefully more and more people will be able to make well informed thyroid treatment choices because of Janie’s hardwork and activism and avoid getting their thyroids butchered by incompetent doctors.
Michele
I am so grateful to see an article posted about being without a thyroid. I had surgery 3 years ago due to cancer being found in my thyroid. While I am now cancer free, the surgery has left me with a damaged left vocal cord due to it being severed during surgery. My voice is gone, reduced to a soft whisper. I feel abandoned by the medical community in my area, feeling invisible and unheard in large groups.
I now have to worry about respiratory problems, due to fluid getting into my lungs from just drinking water.
My medications are always being changed. My brain fog and exhaustion make people who don’t know me think I am an airhead…I also now have adrenal disease and vitamin D deficiency.
Barbara Clark
I had my thyroid removed ten years for cancer and lost a vocal cord in the process. Had a whisper voice that did not really effect me until I started a new careers that involved “talking.” Several months ago I an implant put in my ruined vocal cord and I now have a voice. I can talk loud and project my voice. Still get hoarse occasionally but what an improvement. Used a young doctor in Miami who specializes in voice issues and wow was he great. His name in Dr. Vivero.
I am on levoxothryene at 125 and have a lot of issues… lost all body hair, nails thin, body fat, thinning hair, sleep a lot… Doctor told me Armour was “too much trouble to monitor” and that’s a quote. Told me good luck finding a doctor who would prescribe Armour and proceeded to contact my internist and tell him to not prescribe Armour. Pretty serious resistance.
I have had 2 or 3 radioactive uptake scans in the last 10 years and am pretty certain my cancer is gone… so I wonder if THS suppression is relevant to me at this point.
That we are all having to have these conversations sucks.
Migdalia Pagan
I understand what you are going through I had nodules growing and had to get surgery to remove my thyroid 12/27/17 thinking it was cancerous but no cancer it was removed but I wish I could turn back the hands of time I would of not gone through this surgery a simple thyroid operation gone wrong. In hospital ICU from 12/27/17 – 1/6/18.
I was operated taken upstairs to my room left bleeding for 4 hours they had to operate again to find out where they messed up. My vocals also damaged, feel tired all the time, constipated, no sexual desire, brain fog, forgetful, body aches was put on that Levothyroxine 25 mg Thyroid level too low so Dr put me on 50 mg had terrible side affects weight gain being one of them, chest pains, rapid heart beat, mood swings, depress, angry, always tired, don’t want to leave my house I was very active before all this. I want to stop taking this medication I want something more natural. So I am eating gluten free, no sugar, started juicing, more veggies and fruit eating only chicken, turkey and fish. Hoping this change can help me feel better becsuse I have been so miserable.
Janie Bowthorpe
Migdalia, so sorry for what you’ve been through. This is what changes lives, not Levothyroxine. Study it carefully, as you’ll have to guide most doctor on how to raise, what labs to use, to ignore the TSH, etc. They are not caught up with us, so you have to learn it, and make it clear that it’s what you want: https://stopthethyroidmadness.com/natural-thyroid-101 You can do this.
Marilyn
I had RAI almost 9 years ago now, for Graves Disease. I was on synthroid for 5 of those years. The first 2 years where good and the synthroid was good for me. As time whent on and more and more of my thyroid died I started to feel more and more hypO even though my labs looked good. I begged and pleaded for Armour for 2 years and finaly had to switch doctors to get it. When I finaly got on it, I started out slow and worked up and I felt great, until the reaformulation ( that another story).
I really hate having to rely on labs and meds, for the rest of my life, just to be able to live. Last year my husband changed jobs and we have been with out health insurance for over a year now. I have no perscription, as it ran out, I can’t see the doc, not enough money, and I can’t get labs, same issue there. SO I have to struggle to find meds that I need. I can’t use Desicated thyroid like I want to, because I can’t find it with in a reasonable price for the amount I have to take. IT is a monthy struggle for me and one that I worry if I am ever going to be able to afford next months meds. It is scary to think that if I can’t afford them for what ever reason, then I will not exist and be here for my young children.
Now on to the stomach issues, I can’t aborb potassium from my foods any more, so I have to take a perscriton that is easily aborbed and I have to take it often. On top of that I have and adrenal issues, I make to much aldestrone whitch flushes potassium on top of everything. Nothing like telling some on that tells you that you should drink more water, that you can’t because it will dehydrate you more. Kind of funny to say it too. I have to make sure that what ever I drink has potassium in it, For some reason if it is liquid form I do ok with it. THe body is a mystery and some times mine is to me too. SO far I do not know if the RAI effected my parathyroid glands yet. I need to get that checked one of these days. I also need to have another aldestorone test done again and see if there is something that can be done about having to much so we can balance things out.
Right now because I am on synthroid and sytomel, my hair is falling out and I have all the other hypO symptoms even though I am takeing the exact amount that I would be if it was Armour I was taking. It is hard to have to live like this. I am only doin git until I can get some more desicated thyroid. I rather liked feeling almost normal rather than dragged though the med day in and day out.
Buster
If you can afford Sythroid and Cytomel, then there is NO reason you can’t afford Dessicated Thyroid Medication like Armour or Nature Throid, because the desiccated is pennies compared to the Synthetic Synrhroid and Cytomel. I pay $12 per month for 3 grains per day of Dessicated Nature Throid and Armour is cheaper than that, so you should be able to buy a years worth of desiccated for what 2 months of Synthetic Synthroid and Cytomel cost you. If not you are being WAY over charged for Dessicated Thyroid Medications~!
denise
where do you get Naturethroid for that price? I’m being ripped off. 🙁
Elizabet
I’m right there in the ‘rip-off’ line with you, Denise. With insurance, and only taking 1 grain a day ( 1/2 a.m., 1/4 lunch, 1/4 dinner) I am paying $28 a month through my insurance… So, please clue us, Buster. Thank you. 🙂
R
Go on facebook and join any group called FTPO —- any on thyroid can get you started to finding that information. https://stopthethyroidmadness.com/talk-to-others
Kelly
Oh wow! Yes naturethyroid is soooo much cheaper than synthroid and all the others. I was paying over a hundred dollars for a 3m supply of Tirosant (it’s basically synthroid) and when I switched to naturethyroid I only paid a few dollars for a months supply. I thought for sure it was going to be more expensive since it’s natural but nope! Other way around. Good luck
ASB
Really? You pay $12 per month for Nature Thyroid and you can get Armour for less than that? Where in the world do you live and where do I buy YOUR Armour Thyroid? My AT isn’t covered by any insurance and it costs $75 per month now!
Just an afterthought comment: My TT actually was due to Thyroid Cancer – Medullary ThyCa – Stage 4 at diagnosis in 1997 but numerous lymph mets were visible and palpable 3+ years before that (Docs said ‘nothing to worry about; its’ not cancer’ and of course I believed them – long story for another time) …. and the more I read on STTM, the more I’m convinced that it may be related to Lyme Disease. In college, I went to school infirmary with awful fatigue, swollen glands, sore neck AND a bulls-eye rash all over my body. They did no testing and didn’t refer me to anywhere. The nurse swore I had Mono and sent me back to my dorm, saying take Tylenol, drink lots of fluids and get lots of rest. I swear I haven’t been the same since.
Karen B
I get my NatureThyroid through my insurance at Walmart. Three grains, 30 pills $15.00. I was getting it through my doctor for $30.00.
Darla
My naturethroid is $15 for 3 months. When I was armour it was $20 per month and ready to go up again. That is with insurance.
Elaine
I have thyroid issues too. Mine started in February 2001 after I just had my son. I had lost 90 lbs in 1 month. Went from a size 16 to a size 4. In the whole thing I had 10 biopsies done in 3 months and 7 out of 10 came back as cancer. September 2001 I had surgery and they removed my right thyroid and my life has changed ever since. The labs came back as cancer with hoshimotos disease.
I had no clue why my moods, the way I act and temper changes so quickly. .I have been through their block on meds now.
Finally after 15 doctors I think I found a good one in Georgia. Herr name is Dr. Giles with Laurette Medical Group part of North side Hospital. They did a ultrasound last Friday and she just called me with my results. I have 2 cysts on my last thyroid and 1 of the cyst is 4 cm! The other is very small. I am really stressed now….
Lina
Elaine–how are you doing now? Did anyone ever respond to this?
Michelle
Maybe try going to your local health food store they will probably have Raw thyroid or be able to order it for you. My health food store has it in 60 capsules. It’s not very expensive. Natural sources- Raw thyroid is the one here. It’s a good quality one so I would ask for it where ever you go. I know how you feel right now I’ve been there and it’s miserable and terrifying. It sucks. I hope you feel better soon. 🙁
ASB
Hi!
I’ve never heard anyone mention ‘raw thyroid’. Maybe I missed it on the STTM site.
What exactly is it?
I was on Synthroid for nearly 17 years, felt awful, TSH came in at around 20, so I finally convinced endo to switch to NDT. However, he won’t consider any NDT except Armour Thyroid, and I don’t think my dose is high enough. I think I was 200/day Synthroid and on he started me on AT of 120/day (2×60) with an extra 60 on Sat. and Sun. That was nearly 2 years ago now and It’s never changed. I keep telling him I still feel hypo but he says my TSH is “on target” so won’t even try increasing the AT. It could be that I do have enough AT but it isn’t being absorbed properly. About a year ago I send my labs into the NTH group and was advised that I was “pooling” but endo dismissed it, again saying TSH was “on target.”.
Does anyone know if I can supplement my AT with this ‘Raw Thyroid’ for just awhile to see if it makes any difference?
Even after 20 years on thyroid replacement, it doesn’t seem to ever get any better, or easier….and I have so many stressful issues going on right now (some that have been going on for 5+ years) and I know stress hampers any progress though I’ve tried everything I know of to reduce stress – all to no avail.
Can I supplement my Armour Thyroid with that? (
Janie Bowthorpe
Yes, some have added an OTC thyroid product to their prescribed one if they are certain they are underdosed (labs, symptoms). But each person has to also make sure their issues aren’t also due to having inadequate levels of iron and/or a cortisol issue, as mentioned previously. Because we’ve learned the hard way that if we keep raising in the presence of either, we’re going to have a bad hyper-like reaction, and/or rising RT3, and/or worsening symptoms, etc. https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
Allie foster
Idk what state you’re in but in Tennessee where I am they have a place called The Hope Clinic where you can get your meds for free it’s located in Murfreesboro Tennessee
Muna
Thank you so much for addressing being “thyroidless” and for posting the link to Stephanie Buists’ site. I understand what she is going through to some extent- I have no thyroid, but my diagnoses of cancer on the operating table turned out not to be cancer 3 weeks later-(Thank God) but I lost my thyroid anyway. It hasnt been a picnic and I appreciate you directly addressing this issue. While struggling with hypothyroidism post surgery I had a hard time understanding what was going on and my thinking process was totally messed up- I knew I was hypo, but wasnt sure if everything I was reading applied to me because I didnt have a thyroid. I know it seems obvious, but when your thinking process is muddied with “brain fog” the clearer the better!! Thanks so much for your efforts and hard work
Colleen
Have you tried the iodine, can buy on Amazon.
Nancy
I posted this link to my Facebook page as after reading her blog, it was as if she was leading my life in so many ways and I am hoping it helps my loved ones to understand what life is like for us that have had their thyroids removed. I can’t thank you enough!