I’ve been doing this a long time.
And early on in my activism, I became acquainted with someone else who was fighting for better hypothyroid diagnosis and treatment. And she was a bulldog! She chose NOT to “walk the fence”… instead speaking the bold truth about the scandal of the current popular thyroid diagnosis, as well as treatment with thyroxine for all too many. She has numerous times over the years written the governing bodies in the United Kingdom as to the problem, including with her communication “hundreds of references” to available research and studies to back up the issue.
Her name is Sheila Turner, and she’s the founder of Thyroid Patient Advocacy in the UK (TPA-UK).
And Sheila is a HERO!
Like myself and millions of you, Sheila suffered on thyroxine, which she also terms as “monotherapy”. She had “fatigue, weight gain, coldness and hair loss”–the latter even all over her body! And her pain was so bad that she couldn’t even pick herself up off the floor.
She finally managed to find a maverick doctor who put her on Natural Desiccated Thyroid, and she says “The sun came out!” She has now been happily pain-free and symptom-free for over 13 years. I identify, Sheila!
And her transformation led to the creation of her TPA-UK website and thyroid support forum just for UK patients and more, “dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.” The use of the word IGNORED couldn’t be better said, Sheila.
Others who work with TPA-UK
What I have loved about Sheila’s website and work are all those who are associated with it. They are:
– Barry Durrant-Peatfield, (UK) MB BS LRCP MRCS who serves as Patron and medical advisor
– Malcolm Maclean MD (UAE)”‹, a Scot practitioner who has rejected the idea that being “normal” in labwork means a patient couldn’t possibly have a thyroid problem. Dr. Maclean also wrote a brilliant STTM Guest Blog post about the effects of high doses of iodine
– Kent Holtorf, MD, the medical director of the Holtorf Medical Group and non-profit National Academy of Hypothyroidism.
– Gina Honeyman, DC, owner of the Center for Metabolic Health, LLC and co-author of a fabulously detailed book titled “Your Guide to Metabolic Health.”
– Jacob Teitelbaum, MD, a board certified internist and Medical Director of the national Fibromyalgia and Fatigue Centers and Chronicity.
Sheila’s latest concern and confrontation: Possible removal of Liothyronine (T3) from the NHS Prescription list
Just one more example of Sheila’s persistent and unflagging fight for better treatment, she has stood up in immediate defiance about the possible removal of T3 medication from the publicly-funded National Health Service (NHS) Prescription List–a potential removal as recommended by the NHS-funded program called PrescQIPP. (Only the second middle link on their website is working for me to view the Drop list.)
PrescQIPP is recommending the following:
- They do NOT recommend the prescribing of liothyronine or T3-containing products for the treatment of primary hypothyroidism
- They do recommend prescribing of thyroid hormones in line with Royal College of Physicians guidance (which means thyroxine, T4-only, monotherapy).
The rationale of the above ridiculous comments? Are you ready??
– T3 has a short half-life
– Steady-state levels cannot be maintained
– No robust evidence i.e. has not been shown to be more beneficial that levothyroxine with respect to cognitive function, social functioning and well-being
– Inconsistent with normal physiology
– Insufficient clinical evidence of effectiveness and cost effectiveness to support the use of liothyronine (either alone or in combination) for the treatment of hypothyroidism.
To the contrary, the evidence of consistently-reported therapeutic efficacy of T3-containing medications by a huge and growing body of thyroid patients worldwide is clearly important and worth consideration if the medical profession has even one intelligent and open-minded cell in their brains.
EVEN WORSE, their recommendations show how to move patients off their T3 and onto T4-only.
And in Sheila Turner’s latest newsletter, she states with her typical and dynamic activism:
The information about liothyronine by PrescQIPP is both mis-leading, and some of it is downright incorrect. I am in the process of writing a response to PrescQIPP asking them to remove the hormone liothyronine from the ‘Drop’ list with immediate effect and I will give all the reasons they need to do this. If such organisations as the BTA, NICE, NHS UKMi (Q56.6) and PrescQIPP learnt how the different thyroid hormones work, there would be no controversy and if L-T4 left patients with continuing symptoms, the active thyroid hormone T3 would be given automatically and without complaint. I intend to ensure they know how thyroid hormones work.
Bottom line, Sheila Turner is a strong friend of thyroid patients who is persistent in her quest to drive in the TRUTH about what appears to be a backwards and dark ages medical system in the United Kingdom about how a thyroid works, about diagnosis, and about successful treatment protocols. And what Sheila might achieve in the UK will only help the rest of us!
You are a hero, Sheila!
– CHECK OUT THE LATEST VIDEO, which includes patients in the UK, and which underscores the FALLACY of T4-only, thyroxine treatment: https://www.youtube.com/watch?v=2n0NfAUyOKo
– Have you Liked the Stop the Thyroid Madness Facebook page? It’s full of daily inspiration and information based on solid patient experiences and wisdom!
– TPA-UK forum: http://www.tpauk.com/forum/
Read more on Sheila’s website:
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65 Responses to “There’s a dynamo Thyroid Patient Advocate you should know about!”
Hello folks. I have a recent diagnosis of PTC (just 4 weeks). I’ve been on synthetic hormones for more than 20 years and I am disappointed in myself for following conventional medical advice. Why didn’t I figure this out sooner? Now they are recommending total thyroidectomy–are there other treatment options? I am looking for reccommendations for Endocrinologists in the Washington DC metro area. Thank you!
OMG!! A customer of mine by chance told me about this website. Here’s my experience so far! In 1999 I was diagnosed with a goiter. No meds needed. As I’ve gotten older I have become just exhausted!!! I work 6 days a week (not full days every day but occasionally) my hair falls out in handfuls, my neck feels like it has a sand spur in it!! I get choked a lot!!! I can’t think of words, I forget what I’m talking about when I’m in the middle of conversation!! I can’t remember anything!!! I’ve gained 30 lbs. I was pregnant but I lost my baby. My skin is dry……I litterly drag myself out of bed daily! I hate everyone!! I have no patience!! I could go on and on……
I commented to my doc about the sand spur feeling in my neck, she ordered an ultrasound of my thyroid. It came back were the doc wanted to biopsy one of the nodules. When the office called we talked for 30 minutes before I asked her what the last name of the person she was suppose to be talking to…..it wasn’t even me!! So I got another doctor to do a referral to one of the best or the best hospital in the east coast!! I express mailed my lab results, my ultrasound, my ultrasound after it had been read by a radiologist. When my appointment finally got here. She had not seen anything I had sent her, she didn’t even know about them!! she did nothing but refer me to a psychotherapist!!! Without laying eyes on my paperwork or ultrasound!!! Needless to say I was very upset! So 6 months later I get an email from her saying she was finally able to open my ultrasound ( guess this HUGE hospital doesn’t have a tech department!!) her findings were I have another nodule ( that makes 6) that was bigger than the rest and she thought since it had been so long I needed the ultrasound done at that hospital!! So I gave them another chance, same department different Doctor!! She spoke with me and did an ultrasound after it was over she said my thyroid was fine it was not enlarged, and I had no nodules!!! ( well where did they go??) I can’t help but feel they got together and discussed me!! I did ask her what the spots were on the new ultrasound she said it was my thyroid….I said no the spots….same response. Now I feel not only like crap all the time now I feel like an idiot!! That’s where I am now!! I think a radiologist should have read the second ultrasound not the doctor and the bloodwork, I feel was only mediocre. I don’t know what to do now!! I have to ask off work to go to the doctor because it’s so far away and everyone at work thinks I’m an idiot….that I’m just lazy!! Suggestions??
Andrea, now you understand why Stop the Thyroid Madness exists—because doctors are simply clueless and awful about all this. And your situation is an example. You clearly have had a thyroid problem and should have been treated and correctly. It’s not about laziness at all. Typical uninformed observation by those around us who don’t understand. I would strongly recommend starting out by reading the revised STTM book: http://www.laughinggrapepublishing.com YOU need to start becoming informed, because even with a better doctor, you’ll need to guide them. i.e. you’re going to find out why you do NOT want to be Synthroid, etc, and why you will want to be on Natural Desiccated Thyroid–a FAR better treatment. You’ll also need to right now to get the right lab work, which are also here: https://stopthethyroidmadness.com/recommended-labwork Because as hypothyroid as you appear to be, you may now also have low iron and an adrenal problem which will need treatment. When you get those labs back, do NOT let a doctor say they are “normal”. Lab results have NOTHING to do with just falling in the normal range. They have to do with where they fall. So take your results to this page: https://stopthethyroidmadness.com/lab-values
Great article, however I am familiar with Dr. Kent Holtorf MD who has a practice in Torrance, CA, he’s a rip off! He doesn’t care about improving people with thyroid problems, but only making money off of their thyroid disease. He doesn’t take insurance. I know of several people who have gone to him and were disappointed in his treatment. He has no bedside manners. I guess you get the point.
I have just been informed that due to my Endo retiring & the fact they haven’t replaced him as yet and also new NHS guildlines, that the two remaining Endos do not prescribe T3 which I have been on for nearly a year. I have a weeks worth of medication left & I am very worried, I am in contact with PALS but they haven’t called me back with a solution as yet….I really can’t face living without T3…surely they can’t do this???!!! Not sure if my next move…any suggestions? Thank you
Google ThyroGold. Second, find others to talk to: https://stopthethyroidmadness.com/talk-to-others
Hi all! I had my thyroid removed in 2011 (Grave’s Disease) and have since been on Synthroid 150. I also tried Levothyroxine for a while too. I feel awful. Have had non-stop medical issues the past 2 years. Had my gallbladder removed in January of this year. My anxiety is through the roof. Doc took my thyroid labs and says they are normal, once again. Put me on Wellbutrin for my anxiety but it’s not working. I’m going next week for 2 MRI’s (brain and spine) and also ultrasound of carotid arteries. I had to push for that because I feel very off and my neck pain/back pain/nerve pain in arms and hands/dizzyness etc are off the charts. I’m so sick of feeling so awful and having the worst anxiety. I stumbled across some info saying how bad synthetic hormones are and can wreak havoc on your body. Can someone please tell me which NDT has worked better for them? Armour or NatureThyroid? I am so ready to try something different….worried my doc will have a problem switching me so also need to research who will get me the NDT. Any advice is very appreciated!!! p.s. My labs were TSH: 1.04, T4: 9.2, FT4: 3.2 and T3: 35% (22-35) Becca
Hi. Answered this on the STTM Facebook page for you. 🙂 i.e. https://stopthethyroidmadness.com/options-for-thyroid-treatment And you might want to discern if you also now have an adrenal problem because of being on such a lousy treatment for you for a few years. Do the Discovery Steps here: https://stopthethyroidmadness.com/adrenal-info There is more in Chapter 5 in the revised STTM book to do, too.
I’m in the states and was wondering if anyone help me? I hadn’t thyroid removed a month ago. It was a scary 2 months I went into the ENT thinking I was going to talk about sinus surgery. The CT scan showed a 4 inch tumor on the right side and 4 2 inch tumors on the left. Initial result showed Hurthle Cells and possible cancer. Genetic tests showed NO cancer but surgery was needed as the tumor was growing into my arteries. I want to go onto a NDT I’m currently taking 250 synthroid daily and it doesn’t seem to be helping. Any advice would be appreciated. My dr is pretty amazing but I’m afraid he will push back and I need to arm myself with some facts. Thanks in advance
This would be a good place to start: https://stopthethyroidmadness.com/natural-thyroid-101 And I would also get into Chapter 2 in the revised STTM book, as well. http://www.laughinggrapepublishing.com
I have a friend that was told he had hypothyroidism. He was treated with thyroid meds and things only got worse for him After 3 years they finally testing him for Lyme Disease. He had lyme disease which caused hypothyroidism. If you are hypothyroid, and are struggling with unresolved symptoms, you may want to explore the possibility of an undiagnosed Lyme Disease infection. Many patients and practitioners are not aware of this link between Lyme Disease and hypothyroidism.
Specifically, some research has shown that the Borrelia bacteria that causes Lyme Disease can trigger Hashimoto’s thyroiditis in some people. So there are some patients who had undiagnosed or untreated Lyme Disease, only to go on to develop an underactive thyroid later.
If you have been diagnosed with hypothyroidism, but are not seemingly responding to thyroid hormone replacement treatment, familiarize yourself with the signs and symptoms of Lyme Disease. Thorough testing with practitioners who have expertise in Lyme Disease
Please, Could you help me? I’m trying to calculate the free T3/RT3 ratio and total T3/RT3 ratio of my figures T3 analysis, but I can not because I have problems with the different units of measure and I’m going crazy with calculations.
These are my figures T3 analysis:
Total T3: 0.8 ng/ml
Free T3: 2.3 Pg/ml
Reverse T3: 0.29 ng/ml
I would be very grateful if you could give me the correct ratio, because my calculations give very big mistakes.
Thanks in advance,
Just a rough estimate, but looks like you are close to 8. Also try here: https://stopthethyroidmadness.com/rt3-ratio
I started on the erfa thyroid,and I am getting to have more strength,,,,not sleeping in afternoon,more energy. I am raising the amount a little at a time,I am on 125 right now,been on this
Dosage for 7 days. I feel it needs to be increased, but want to wait at least 2 weeks. So I can take
My temperatures and pulse,to see what those are. Been sleeping really well, still have some joint
Pain, so will see..weight is up also..
I’ve had this disease since 2009, levels and life was okay(symptoms I could live with BC I don’t like complaining) until having our 3rd child and having my tubes tied (BC I was on birth control when we got pregnant with our 3rd!) But I can’t take it anymore I hurt I cry I lose my hair I gain weight my energy level is none existing and this isn’t who I am. I’m supermom and love new adventures w my family so I need help!! We have spent so much money on medical bills and medical CO pays and deductibles and every Dr just says the same thing and ups my synthroid which does nothing.. I know there is something terribly wrong and I need to get to the bottom of it BC my family needs me and I need them!! Thanks for listening.. I’m new to the whole web research to find answers and solutions and just reading others stories so I’m not alone in this uphill battle
Hi Kayla. Yes, we are here to listen. And here’s where to start towards getting your solution, because doctors don’t get it: https://stopthethyroidmadness.com/t4-only-meds-dont-work I would also strongly recommend getting the revised STTM book: http://www.laughinggrapepublishing.com Hang in there! Patients have figured a lot out for you.
I’m also in BC and have had a wild ride of symptoms and the ‘Doctors knowing what’s best’. Thanks to Janie for this site!
A couple of things that have gone horribly wrong over the years:
1. Iron levels. Thyroid meds (I take NDT – NOT Erfa) won’t work unless your blood iron and ferritin are normal. Argue with your Doc and get both checked. Having babies wreaks havoc on iron and the symptoms of iron deficiency are almost the same as Hypothyroid (hair loss, weakness, tired, etc.)
2. Selenium. I take low level supplements a couple of times a week. Much of BC has little Selenium in the soil, so eating healthy and local will not help you to get this most important T4 to T3 converter/activator.
3. Vitamin D. Janie talks about this one, too, but I never realized just how much you have to take for it to help. I now take 2 or 3000 iu a day
3. Adrenals. I suspected this was a co-factor and the Docs wouldn’t hear of it. In desperation, I went to a Chinese Medicine Doc (learned we have 9 pulses representing different body systems) and after 3 minutes of adjusting and readjusting his fingers on my wrist, he told me I have ‘no discernible adrenal pulse’. He gave me some chill pills to keep my adrenals from overworking/let them heal. He also injected adrenal glandular liquid directly over my adrenal glands. For the first time in 2 years, I felt calm and quiet in my body. Supercalm wore off after a week but it’s like he jump-started the healing because I don’t feel nearly as strung out as before.
My Chinese Medicine guy is English and also does acupuncture, nutrition, qi gong (like tai chi), and other stuff. I mention this because I saw a Chinese CM doc once before, years ago and something got lost in translation when talking about the million details of living with hypothyroid.
I hope there is something useful for you here and wish you only the best wishes for getting back to your real self. You are not crazy, you are still sick and deserve to be fully treated.
Here is my story and request for suggestions.
I’m 69 and about a year ago, my TSH increased to just over 7.00. All other blood tests were good. My doctor put me on 50 ug of Synthroid daily, I understood that it probably would make me feel “improved”. I felt no change for a month or so, but started to feeling tired. The next blood tests showed TSH at 2.0 and the doctor wanted to get to TSH 1.0, so Synthroid was increased to 75ug. That was about 6 months ago and I became more and more easily exhausted and tired. I requested that more complete thyroid test be done. The results seemed perfect, but I felt terrible. Here are the April 2016 results:
Free T4 – 1.06 ng/dL
Free T3 – 3.3 pg/mL
Thyroid Peroxidase Ab – <1 IU/mL
Thyroglob Ab – <1 IU/mL
All values are within "normal" limits and still feeling quite bad.
On April 29th I took matters into my own hands and decided to experiment with the "forbidden". I stopped taking Synthroid. I was not taking any thyroid medication. It only took a day or so and I started feeling BETTER!!! It's been 5 weeks now, and I feel much better. Not perfect, but more energetic, able to get up in the morning without effort, able to walk to my mailbox without exhaustion (only 50 feet), and even climb a Smokey Mountain trail up 2000 feet and 6 miles without exhaustion. W
Sorry, hit send too early.
Continuing from above — What is happening? I will be getting results from blood tests on June 6th. I expect it may be wacky, but ???
I believe my doc will prescribe a NDT and I was hoping to be able to get the Canadian “Thyroid”, as you Janie uses. Any suggestions?
I have the 1st STTM book and have learned much from it. Even had my doctor read the introduction (he did).
I’m thinking That I would benefit from an NDT and welcome suggestions.
If you feel you are still hypothyroid, you will do yourself a huge favor by looking at NDT: https://stopthethyroidmadness.com/natural-thyroid-101
Hi Richard. There seem to be some people who are put on the lousy Synthroid due to a high TSH, but the latter can happen from stress in some people, not from primary hypothyroidism. So perhaps that was you! Congrats!
I have a somewhat long story that mostly belongs on the the Doctors Wall of Shame. I am just wondering if there is a doctor worth seeing in Washington, Idaho, or Oregon.
Pfizer’s Cytomel (T3) in the U.S. now contains gluten (wheat starch). Is this old news that everyone already knows about and I”m just discovering, or is this new info to most people? You can call Pfizer at Call Pfizer at 1-800-438-1985 to report a concern over this.
I did a post about it last week on the STTM Facebook page. And it’s more about that it “might” contain gluten, not that it does. There are four sources for the starch they use, and we can never know, sadly, if it’s wheat or the other three. Might want to head on over and “Like” it so you’ll know about things like this. 🙂 https://www.facebook.com/StoptheThyroidMadness/
My thyroid has been taken off mostly after three operation due to the benign nodules. I’ve had L-T4 every morning when I wake up with 1 and 3/4 pills.The T3 is normal, but T4 and TSH little bit higher than normal. Do you have any convinient method to measure the thyroid function rather than to have a blood test. Thank you very much.
One important thing we learned is that lab results have more to do with where they fall in the range. So when optimal (especially on natural desiccated thyroid), our free T3 is towards the upper part of the range, free T4 is mid-range and TSH is quite low. Other signs are achieving a mid-afternoon temp of 37C or 97.6F. Also the removal of symptoms such as needing an afternoon nap, depression, hair loss. These may be a challenge to achieve on T4, which is only one of five thyroid hormones. https://stopthethyroidmadness.com/t4-only-meds-dont-work
Happy to find your website and FB page. I have several thyroid nodules and cysts which get inflamed time to time and ibuprophen can calm it down. My lab tests TSH,FT4,FT3 are normal and antibodies not found. But I have severe symptoms like headaches,jaw aches,fatigue,hair loss,depression,anxiety and racing thoughts. Right now I take iodide 100 mcg per day by doc prescription and under observation. I have feeling my thyroid is compensating hormones now but it can become decompensated. Also I am linking it somehow to the chronic tonsilitis I have.
Hi Sophia. Several things to increase your knowledge: for one, lab results have nothing to do with just being in the normal range, we’ve observed repeatedly in each other over the years. They have to do with “where” they fall in those ranges. See this: https://stopthethyroidmadness.com/lab-values
Depression, fatigue, hair loss are classic symptoms of hypothyroidism for many, so the iodine may not be enough for you. Low iron can also cause those symptoms, too. Anxiety and racing thoughts could also be that your adrenals are now stressed due to being so hypothyroid. Here are self-tests you can do: https://stopthethyroidmadness.com/adrenal-info
I have been diagnosed with a low thyroid for about 9 years but have been refusing to take any medication because I just felt like my symptoms were quite minimal and did not seem to affect my life. My doctor at the Veteran’s Administration is upset with me because she says if I don’t start on medication all kinds of other things could happen to me in the future regarding my health. My TSH was at 56 once, but now it’s at 15 and last year was a 6.5. The doctor said the number does’nt matter much; once it’s too high it’s too high. My T-4 Free was recently measured at 0.76. I am a 57 year old male. A year ago I was told by an endocrinologist that I would eventually get full blown Hashimoto’s and that I was postponing the inevitable. Most of the people on this site seem to be suffering a lot; I’m currently feeling Ok. My question is, has anyone out there been in a situation like mine and healed their condition and if so, what did you/they do?! Thank you for your response and your help!
Hi Drew. The problem is that both your TSH and free T4 scream hypothyroid….and your cortisol may be kicking in and disguising how bad you really are. Men may not show the fatigue that women do, but they can manifest other problems like rising cholesterol, rising blood pressure, heart problems, digestive problems, nutrient absorption issues, etc. https://stopthethyroidmadness.com/long-and-pathetic Yes, it’s up to you, but I personally wouldn’t keep going like this. Some patients try iodine supplementation first but take supporting nutrients first like selenium, vitamin c, etc for a month before starting iodine. Others go straight to this rather than the lousy Synthroid: https://stopthethyroidmadness.com/natural-thyroid-101
I ordered thiroyd from thailand and its been 11 weeks and i still dont have it and im using thyrogold it is carrying me somewhat but ive had a low grade fever since i been on it. anyone else been waiting too long. i been emailing them, they did send me 150 pills for free but i take 10 a day and im desperate 🙁
Never heard of it causing fever, Terese.
Have had cold temperatures for years low 35,s in morning, wear two jumpers and use a hot water bottle, thyroid results all good normal, rt3 not done. Insomnia chronic still try to work intermittently
As roofer. Ok while active. Otherwise mentally exhausted, foggy brain etc,
Other brain hormones high – prolactin, lh, Fsh very high 24, max. Range goes up to 12. Any suggestions male age 72 exposed to chemicals years ago.
Lawrence, sounds like your doctor is going by the TSH…and many, many people have a so-called normal TSH yet raging hypothyroidism. See this: https://stopthethyroidmadness.com/tsh-why-its-useless
Where do I go to purchase a consultation w/you? I saw it before & now can’t find it. :/
My DO dr has me starting on NatureThroid at 12.5mg because of heart palpitations. Based on your book, I should be starting at 5 times that amount and going up from there…?
It’s right here: https://stopthethyroidmadness.com/coaching-call
Almost 4 years ago I, had my right thyroid removed when a nodule was discovered. the original aspiration did not have definite determination of cancerous cells so removal was suggested. As it were, they did discover papillary cancer cells and gave me the option of irradiated iodide treatments or removal of the left thyroid to prevent possible spread. I opted for the latter. I feel to this day had I been better prepared and educated ( since then I have found out of the mistreatment) I probably wouldn’t have made that decision. I am a 53 year old who was going through menopause at the time, suddenly left my husband, went through the second surgery, and now have filed for the divorce and waiting. I have been separated for 31/2 years and waiting over a year for divorce. I am very confused at this point, in a lot of pain, tired and depressed. I am trying sooooo hard to do everything I can with diet , wellness education and even tried meditation. My exercise program doing water aerobics helps amazingly with pain but I have to be very careful not to over do it or I sleep all day. My recall memory is becoming very poor, faces and names I new yesterday will be forgotten today. I make very bad decisions. Very difficult to make commitments or keep a job. I can’t get my doctor or endocrinologist to listen. I take 125 mg of Levothyroxine every morning.
I hate my life but i fight the fight every day ( 14 grandchildren is all the incentive I need).
Hang in there all and pray this is a temporary…life that is. The best is yet to come and it will.
Tammy, you don’t have to put up with the inferior treatment of Levo. I don’t know where you live, but find others to talk to here: https://stopthethyroidmadness.com/talk-to-others
Anyone suffer with on again off again hyperhyroidism? Mine has never been off the charts hyper. Four years ago they found nodules.
After that I started having a red blistering rash on my feet and lifting nail beds.
Now I ache all over like I have the flu, or been in the gym ALL day.
Lost my insurance, so all the Dr. will do is tsh.
Any one have suggestions?
Thanks. Great blog.
Hi there, my girlfriend 3 months ago had her blood done and it showed her t4 and tsh were in the norm and her t3 was high, so they gave her levothyroxine, it seemed to work right away, she had energy, etc, but that wore off, she was feeling tired, gaining weight quick, losing hair, sore joints, so I told her to go to a different doc, they did her blood again, her her tsh, t4 and t3 are now all in the norm, but she still has all the symptoms, so they checked her antibodies, came back normal, she does have a low vitamin d count and her inflammatories were high, normal range 10-20, hers was 21, so they kept her on the same dose of levothyroxine, but today she woke up feeling the worse she ever has, very fatigued, her throat or thyroid is swollen, she doesn’t see the endo for a few weeks yet, I told her you really need to ask her about natural t3 and t4, or maybe armour, what are you thoughts on that? also what are your thoughts on her fatigue and swollenness, what can she do in the mean time before she goes to the endo? I said to try taking vitamin d and b12 supplements and maybe stop eating gluten until the endo, what do you think? Need answers please or recommendations, its very hard to see her like this? Thanks in advance
Jesse, one thing patients have learned is that lab results have nothing to do with just “falling in the normal” range. i.e. it’s “where” a result falls that has meaning. https://stopthethyroidmadness.com/lab-values Also sounds like she could have Hashimotos with that swollen thyroid. The only way to know for sure is do BOTH antibodies labs, shown on this page: https://stopthethyroidmadness.com/hashimotos A very small percentage of Hashi’s patients show no antibodies but symptoms of Hashi’s, so they have an ultrasound. Finally, yes, NDT has done wonders for Hashi’s people, but the above Hashi’s page will give you patient experiences. IF she learns it all, she can hopefully find a doctor to share it with and get the right treatment.
Another thing I have seen is iodine deficiency may cause swelling, maybe that’s it, idk, got the endo appointment moved up to tomorrow because it’s hard to swallow, do you think people should cut out gluten dairy and soy? And of course sugars?
I’ve been on Levothyroxine for 15 years. I remember the Doctor who first prescribed it was telling me that thyroid disorders were “no big thang” as he pulled his pocketknife out of his pocket and started to clean the dirt from underneath his fingernails, (he was an accomplished surgeon too) telling me I basically had 2 options, one, he could put me on Levothyroxine for the rest of my life, or 2. He could cut that sucker out, anytime I wanted. I opted for the Levothyroxine, being not overly impressed with his surgical skills so far. He lost his license to practice medecine soon after that, after being convicted of abusing prescription meds he had over-prescribed to himself. I’m tired of being tired all the time, how does one even begin exploring potential options? With blood work? Or by taking some supplement? My current Doctor is a nice enough guy, but both times I told him I’m still really tired, he ordered more blood work and then upped the dosage on the Levothyroxine. See, Doctors these days have no problem putting you on a half-dozen meds for the rest of your life, they see that as having done their job.
Hi Tim. Congratulations for getting it that levothyroxine is not the way to go. I would recommend starting with the revised STTM book to learn from patients: http://www.laughinggrapepublishing.com And this will help: https://stopthethyroidmadness.com/natural-thyroid-101 It’s important for each of us to become quite informed in order to guide any doctor.
My husband (see message 2) went to live in a nursing home a few days ago. His hospital discharge summary gave his T3 medication (total 100 mg, as it has been now for five years, except when messed up by endocrinologists) to be given 5 times a day at 3-hourly intervals. When I arrived today I found that the nursing home doctor had ordered his entire day’s 5 doses to be given at 8 am, and it had been. Such ignorance of the difference between T4 and T3! My husband seemed okay when I left him at 5.30 pm, but I will telephone later to check on him.
Oh boy. I saw the same thing on my prescription bottle of NDT…3 1/2 grains in one gulp in the morning. Nope. By the way, people have regularly reported getting better results with 3 times a day for T3-only rather than 5 timed, probably because each dose gives a bigger punch that way.
I have Hashimoto and take synthroid. I have days when I am so tired that I sleep all day and night. I am 75 and still have hot flashes. Are any of these symptoms part of my hashimoto
We agree that symptoms can have different causes. But it doesn’t take away that hypothyroidism, and especially poorly treated hypo with Synthroid, can result in those same symptoms, like being tired all day. Hot flashes are usually associated with low estrogen, or low iron (which is common with being poorly treated) and/or low aldosterone (a steroid which if low, usually means cortisol is too low, and low cortisol is the result of the poor treatment with Synthroid).
I am solely on T3 due to hitting a “wall” after being more than 20 years on T4 alone. Definitely T4 resistant. Was never able to get my NTH high enough but now realise that I should have been on 3 or 4 grains. I currently take MR or modified release T3 which although it is still chemical tertroxin is delivered in a modified release that is easy to take and what’s better my body likes it. I take it twice a day and because it is a low dose delivery it is so much kinder. If this is taken off the market I am not sure what I will do.
Just when I feel I am making progress.
Was I right in reading that Papilliary Cancer has now been downgraded to a non cancer condition. After 35 years and three doses of 131 radiation and so much worry……..
Judith, yes, you were right in what you read, but not all patients agree with the down-grading.
No, this is not correct. This is for a very specific variant of papillary thyroid cancer. This variant form is no longer considered thyroid cancer. But papillary cancer itself still exists. See New York Times article at: http://www.nytimes.com/2016/04/15/health/thyroid-tumor-cancer-reclassification.html?_r=0 and also the actual research article itself at http://oncology.jamanetwork.com/article.aspx?articleid=2513250 Online First > Original Investigation | April 14, 2016 Nomenclature Revision for Encapsulated Follicular Variant of Papillary Thyroid CarcinomaA Paradigm Shift to Reduce Overtreatment of Indolent Tumors Open Access ONLINE FIRST Yuri E. Nikiforov, MD, PhD1; Raja R. Seethala, MD1; Giovanni Tallini, MD2; Zubair W. Baloch, MD, PhD3; Fulvio Basolo, MD4; Lester D. R. Thompson, MD5; Justine A. Barletta, MD6; Bruce M. Wenig, MD7; Abir Al Ghuzlan, MD8; Kennichi Kakudo, MD, PhD9; Thomas J. Giordano, MD, PhD10; Venancio A. Alves, MD, PhD12,13; Elham Khanafshar, MD, MS14; Sylvia L. Asa, MD, PhD15; Adel K. El-Naggar, MD16; William E. Gooding, MS17; Steven P. Hodak, MD18; Ricardo V. Lloyd, MD, PhD19; Guy Maytal, MD20; Ozgur Mete, MD15; Marina N. Nikiforova, MD1; Vania Nosé, MD, PhD21,22; Mauro Papotti, MD23; David N. Poller, MB, ChB, MD, FRCPath24; Peter M. Sadow, MD, PhD21,22; Arthur S. Tischler, MD25; R. Michael Tuttle, MD26; Kathryn B. Wall27; Virginia A. LiVolsi, MD3; Gregory W. Randolph, MD28; Ronald A. Ghossein, MD29 [+] Author Affiliations JAMA Oncol. Published online April 14, 2016. doi:10.1001/jamaoncol.2016.0386 This is just one form of what was once diagnosed as papillary cancer. What was downgraded was a particular form of this, NOT papillary cancer itself.
I think what ur doing is brilliant. Taking the medication off is just ignorance!! I support u in ur activisim. I’ve had congenital hypothyroidism since birth.
Oh – hecky thump Janie – you have made me come over all shy! Thanks though for your great endorsement and for pushing the fact (as you always do) that all we thyroid advocates should, and must work together – as this is the only way we will eventually get our message(s) through. It is so hard to believe that there is even consideration that prescriptions for T3 should removed so patients here in the UK will be left ONLY with prescriptions for the beetle juice L-T4 monotherapy. Somebody, somewhere must be getting some mighty big back-handers from the lucrative Big Pharma.
I will post a copy to you of my response to PrescQIPP -DROP List once completed. What is happening must be made as public as possible because if it is allowed to happen in the UK, you can guarantee it will not be very long before it starts to happen in the rest of the world.
From the UK. Thank you Shelia . So many meds are not available on the NHS already. To take any off is unthinkable . There must be a way to be heard . I’ve had enough from the truth being withheld .
Together we are stronger.
Thank you Sheila for all that you do for us fellow sufferers that don’t have the energy to do it ourselves. T3 has made a huge difference in my life but I’m still not there yet, am trying to get doc to put up T3 looks like I’ll have no chance now. The thought of living without T3 has filled me with so much dread, I just can’t go back to existing, I want to live my life! If there is something I can do to help I will, angela x
Thank you Janie for mentioning the UK fight that Sheila and people in the UK who want anything other than T4 monotherapy are up against. Before I became worse with Addison’s disease I used to help with TPA a little as a moderator and you are right about Sheila she is a wonderful fighter for us. I was in hospital 3 weeks at the new year and they immediately left me on thyroxine and my body missed my dessicated thyroid and I soon became depressed and weaker. Some of that of course was that they saw fit to change my adrenal hormone replacement too, I weakened, was so ill, they are so ignorant about thyroid and adrenals. These doctors pretend to care but I have come to the conclusion that they really don’t, those in high places anyway :(. Who the hell are these people given the right to drop essential meds off the list anyway?
Greetings from USA. Thank you Shelia for giving thyroid patients like myself a voice. This is a horrible injustice for all thyroid patients everywhere. The “What’s next?” is to horrible to imagine. Removal of all NDT drugs? Just T4 drugs.
I too would love to know what I can do to stop this travesty from happening.
Hypo/hyper mom of four and trying to heal
Such a great post! Thanks for sharing! I recently have switched to NDT and T3, and the combination has changed my life! Synthroid did not work for me after having my thyroid removed last August, and I have been miserable until switching!
I am so thankful to Sheila and others for their tireless work on behalf of thyroid patients. Just last week my NHS Endo agreed that I could have T3 prescribed as I cannot tolerate Thyroxine. He is sending my GP a letter. ( Now I am worried if I will actually receive it. ) I was diagnosed in 2004 and always felt extremely ill on thyroxine. I bought the T3 myself and began to get better thanks to Paul Robinsons method. I had planned to ask my Endo if he would prescribe it but to my surprise he offered before I could ask and said that I didn’t need to buy it as it was available on the NHS.
KODOS to Janie and Sheila Turner and all who are putting up a GREAT FIGHT for our THYROID RIGHTS . Taking off T3 off the market is SUICIDAL . Are the ones that wanting to remove T3 are any of their loved ones depended on thyroid meds ? Do they know what it’s like to be with out the meds . we must have .What do they know what’s good for us ? Why don’t they rather ask US thyroid meds . depended patients what more they can do for us to feel the very best we can feel . Instead of taking our life meds . away and punishing us even further . ENOUGH !!! PLEASE STOP THE THYROID MADNESS PLEASE !!!!! Janie please let us know what we can do on our part to STOP THE THYROID MADNESS to rid this problem and future problems once and for all . Leave it up to us thyroid patients what works for us . And STOP PLAYING AROUND WITH OUR THYROID MEDS . We KNOW WHO YOU ARE . TRUST US . We know how we feel . You don’t .
My husband, aged 82, was in hospital last year, first for an infection, then for a bleeding ulcer. Though he had been taking T3 for four years, the endocrinologists “did not believe in T3”, so they withdrew it and replaced it with T4. He promptly went into a serious condition, myxoedema crisis, which has a high mortality rate. He was fortunate to survive. The endocrinologists just did not consider that there might be a good reason for him being on T3.
When I have been in the hospital, when I check in I always tell them I am allergic to Synthroid, so they cannot change me from NDT. Fortunately, I have only been asked once by my hemotologist what they symptoms were, I replied, rapid heart rate, shortness of breath, and a flush over my upper body.
I live in the States Sheila and this disturbs me that they are trying to do away with T3 as a thyroid treatment!
Thank you for fighting the good fight for us all!
I have to share a heavy news with all of you. The 7th of June Sheila was admitted to hospital after a massive stroke. She was hospitalized for 8 weeks, of which the first 7 weeks without treatment with NDT. Rescue workers did not know that she is being treated for thyroid condition and her family did not notice that her medication was forgotten. Because Sheila herself lost the ability to speak, she could not make others aware that she needed her medication. How the lack of treatment of her thyroid condition had affected her recovery from stroke, only the gods know … but I’m not very optimistic.
The last update on Sheila’s condition was the 26th of July. Nothing since. 🙁
I am glad this is out now about her stroke. Thank u. I knew about not long after it happened, but for her privacy at the time and weeks afterwards, decided to say nothing. So it’s time and glad you posted. It is simply awful she went so long without her meds.