Stop the Thyroid Madness has an excellent and active Facebook page. Daily posts reflect what we as informed thyroid patients have experienced and observed again and again.
And this statement in the graphic was made by someone on an important post. That post spoke about years of patient experiences on one particular subject which repeatedly counters what some doctors state.
And on one side, we agree about some social media posts!! There can be some pretty nutty information from some groups on Facebook or elsewhere. That poor information can come from members or the group’s owner or admins.
And as far as doctors, there can definitely be some who give brilliant information to us in their offices, or via a virtual appointment.
For example, my husband had to have his bladder removed last month. He was exposed to Agent Orange decades ago, and that toxin eventually wreaked havoc on him. That’s why I haven’t posted much here in months–it’s been hell for him with all his problems. And it’s been time-consuming for me as a caretaker, besides the grief from worrying I was going to lose him. And we have gotten good information from his surgeon as to how the surgery would be performed (before it was performed), and how long it would take him to recover.
But when it comes to thyroid disease and issues related, we as patients have sadly and repeatedly found too many doctors to be SORELY and BROADLY misinformed. It’s the very reason I created the patient-to-patient, Stop the Thyroid Madness movement nearly two decades ago.
And even to this day, too many doctors still keep us sick. They pointedly REFUSE to see, to learn from their patients.
So to those of you who might share the same sentiment as what was shown in the graphic, here’s information you badly need to be open about. Each point below starts with what doctors commonly believe or state, followed by what that statement or belief has done to millions of us as thyroid patients.
1) “The TSH lab test is the best way to monitor you.” To the contrary, doctors who go by the TSH and its erroneous “normal range” have been keeping us sick for decades, whether for diagnosis or treatment. Here’s solid information as to why.
2) “Synthroid or Levothyroxine, by themselves, are the gold standard of hypothyroid treatment, no matter the cause.” To the contrary, these are simply one of five thyroid hormones–T4. It’s a storage hormone meant to convert to T3, the life-changing hormone. But as we have experienced for decades, being on nothing but T4 has caused the vast majority of us problems. Here’s solid information on that.
3) “Let’s only do one of two thyroid antibodies to see if you have Hashimoto’s disease”. Guess what? One antibody they choose can be perfectly normal, and the other they don’t choose can be high. So you lose the important diagnosis. Here’s solid patient information.
4) When it comes to your Hashimoto’s disease, let’s just wait and do nothing to let it run its course. As stated similarly in the patient-to-patient book Hashimoto’s: Taming the Beast, that’s akin to letting a dog chew your leg off, but by bit.
5) “You should ONLY take thyroid meds on an empty stomach.” To the contrary, nearly two decades of reported experiences have shown that many thyroid patients still do well even with fruit, or veggies, or grains (if not gluten intolerant) in the stomach. Even taking meds with coffee and cream has seen patients report not being a problem if they are consistent, and watch their free T3 and free T4, and adjust as needed. The main things we avoid in the stomach at the same time are iron supplements, calcium, high fiber, etc, which can bind “some” of the thyroid hormones. Even soy mixed in with thyroid hormones at the same time can negatively affect absorption.
6) “T3 is dangerous as you get older.” We have definitely and repeatedly blasted that out of the water. There are groups for those who are older thyroid patients, and they report soaring on T3, just as younger people do. Sure, they may need to start low and raise low. But they do wonderfully. And guess what–heart and bones NEED T3. And T3 has repeatedly improved bone density, improved heart health, in patients!
7) “Your low TSH with T3 in your treatment will cause bone loss and heart disease. Thus we need to lower your meds.” That has been the most egregious and false belief by doctors ever, and has made us see a return of our hypothyroid symptoms. For one, it’s Grave’s disease and its resultant low TSH which causes bone loss and heart disease. Our low TSH is just a normal result of having T3 in our treatment and has NEVER caused bone loss or heart problems.
I could go on and on about how too many of our doctors can be in the dark ages about thyroid treatment and cause us immense problems. It’s worldwide.
So do know that in the area of thyroid disease, you can be making a huge mistake thinking you need to listen solely to a doctor without also listening to nearly 20 years of reported patient experiences, observations and wisdom in getting well. The latter is what this website and the books are about. And…it…has…changed…lives.
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93 Responses to “When Some People Don’t Get it Yet About Doctors…”
I was just diagnosed with Papillary carcinoma, and I want to ask if you recommend a surgeon at UCLA. I’m new at this, so I’m trying to navigate the system! Thank you so much for your response!
As of Feb 2022 Does anyone know which is the best NDT to take is it still armor or has NP thyroid been revised since the recall in July thanks for any help ladies
Armour has definitely still been working to this day for what seems like the majority but only if they understand what it truly means to be optimal, having a low RT3, etc. https://stopthethyroidmadness.com/optimal. There is also strong evidence here or there via labs that NP is working again. Just can’t make any guarantees for all.
I have been taking thyroid medication for 35-40 years. As a young person I had all the symptoms of low thyroid, but no one would prescribe any meds for me because at that time I always tested in the newly defined “low normal” range. Then maybe after 20 years, “they” realized those parameters were too broad and changed them, and I was finally able to get thyroid medication. But hypothyroidism doesn’t go away. Eventually, I developed a goiter that pressed on my throat enough to cause me to have problems with coughing and choking and I had a thyroidectomy. Now my baseline T4 is zero; I take 300 mg of Armour Thyroid a day (I also take 1 mg estradiol, 5 mg medroxyprogesterone, 30 mg of amphetamine salts for ADD 2/day, 300 mg Bupropion, and 5000 IU D3). In spite of these meds, I still struggle with hypothyroid symptoms, a sluggish body and mind, feeling cold all the time, dry skin and brittle hair, constipation, easy weight gain, and irregular sleep patterns.
I noticed some people are taking T3 as well as Armour (or other product) and that the combination seemed to really help some people. And here is my question: I wondered if anyone has tried supplementing their medication with dried thyroid, adrenal, thymus, pituitary, and/or other glandulars that are available through health food stores such as iHerb.com. I have noticed people talk about the effect of cortisol on their thyroid function too. The only time I have ever dramatically lost weight was about 6 years ago. Following knee replacement surgery (the cartilage in his knee was gone and walking was very painful), my husband developed pneumonia and was sick in the hospital for 10 weeks. I spent every waking minute I could spare from my job and my family with him. He began to recover, but then he developed a second round of pneumonia and passed away. I went to my PCP afterward, and they found that during his illness I had lost 50 lbs. This was certainly the most stressful season of my life, and at the end, in spite of the hard-fought battle, I became a widow and had to bury my husband of 37 years. Since then, things have still been very stressful, but in a different way. I am able to say that I have not gained it all back, but I have gained about 15 lbs. I do not want to gain back any more. It has been a while since my endo ran labs for me, so I want to see him again and talk to him about this idea (maybe). He wanted me to go vegan–no meat, no dairy, no eggs, no fish, but I need animal protein to make my brain work. If I ate only foods from plants, I would focus on the carbs and blow up like a balloon. To effectively add desiccated glandulars to my supplements, I need to know how much of what to add. Sources of reliable information, names of supportive practitioners, hopefully in the Memphis/Bartlett area of west Tennessee, and feedback from others who have tried this idea would be very much appreciated. Thanks for listening. (This post is really long; feel free to shorten it.) I appreciate STTM very much. When I first discovered your blog years ago (this is the first time I have written in), it was wonderful to experience the confirmation and realize that I was not off-base in my perceptions of my experience as a hypothyroid patient. Your words and everyone’s sharing were and are very affirming, reassuring, and confidence-building.
I’ve just been diagnosed with low thyroid function and will start Levothyroxine 25 mg tomorrow morning. I have been surfing for more information on this condition and it looks as if I may have been wrongly diagnosed. My Free T4 level is 15.9 (a bit low but not worryingly so) and my TSH is 0.02 – a sudden plummet from my last blood test. Several of my symptoms are the opposite of those listed for hypothyroidism as well – I have lost weight, not gained it; I don’t feel cold – I feel hot for the first time in my life, and despite debilitating blood cancer, my fatigue is not that bad, although in fairness I have been taking erythropoietin injections, but my bloods don’t show any difference. Can someone please put my mind at rest and tell me that I should be taking this medication.
Hi Maggie. You need to study this page: https://stopthethyroidmadness.com/t4-only-meds-dont-work And symptoms can vary between individuals. In healthy people, the free T4 is “around” midrange”
One night by accident, I took the Amour medication. I woke up feeling ALIVE. A lot of symptoms were gone, or had lessened. I had taken it on an empty stomach around 10 PM. I had learned that most of the Thyroid medication TAKEN DURING THE DAY ends up IN THE TOILET, either by a bowel movement or thru the urine. By taking it at bedtime, it STAYED IN MY SYSTEM; I felt I could do anything, be anything 8 hours later. I struggled for 4 years with only getting 3 hours of crappy sleep, severe constipation, painful body, and all of this WAS GONE in 8 HOURS. I woke up feeling like a new person! I was so happy that I found the fountain of youth — taking it at bedtime. From this day forward I took it at bedtime. I finished dinner in the evening, then took it at 10:00 bedtime. If I stayed up after taking it at 10 PM, I only drank water. I did not want a bowel movement and for the Armour to end up in the toilet. I was done eating for the rest of the night. This was worth it after finding the fountain of youth.
From that day forward, I NO LONGER took it in the morning.
I am still very confused about what medication is the “BEST” choice. I have not taken any medication in about a year which is terrible!
I was taking 75 mcg of Levothyroxine and 5 mcg of Liothyronine in which at that time my Endocrinologist said I was finally in a normal range and told me I did not need to be her patient anymore because my PCP can take over managing the meds. In the meantime, Covid happened and I was house bound with no way to get a refill, eventually ran out of medication and haven’t taken anything since mostly because I am so overwhelmed by it all:(
Being that I am basically starting meds over again, I have been thinking about trying a NDT but with the recalls and varying levels of T3 /T4 and fillers, I am concerned about it.
About 6 months ago, I switched my PCP from a M.D. to a D.O. in hopes to get a doctor that would be more open to helping me and at that time I was able to request for more detailed bloodwork to be done. While fasting my TSH was high at 21.12 (0.40-4.50). My Thyroid Peroxidase Antibodies were high at 158 (<9) and my Thyroglobulin Antibodies were high at 13 (< OR =1). My Free T4 was low at 0.6 (0.8-1.8) and Total T4 was low at 4.6 (5.1-11.9). My T3 Reverse was normal at 13 (8-25) and Total T3 was normal at 81 (76-181). The D.O. did not order the Free T3. I am also deficient in Vitamin D at 21 (30-100) and my Hemoglobin A1C is high at 6.3 (<5.7). I am 43, overweight (280lbs) 5"6 height, already went through menopause early in life, many years ago and have never had any kind of hormone replacement. To top it all off, I have high LDL-Cholesterol at 182 (<100) and high Triglycerides at 173 (<150). At this point, I am not taking any medication for any of it. My D.O. was willing to prescribe me Armour so I told her I wanted to research it first and I don't know if it's the best choice? I am a school teacher and assume that my stress levels (Cortisol) are off the charts. I work an extra 4 hours every day for free…last car in the parking lot, ALWAYS so I can be the best teacher for my students. They have been my priority for the last 7 years but my weight gain and health has declined so much. I need to figure out how to get my body back to a healthy state. I know it will be a long journey but without the support of a knowledgeable doctor to help me, I feel so overwhelmed and defeated. I have tried to find a doctor in the central Florida area that knows about Hashimoto's with no success and spent endless hours researching it. Any advice would be greatly appreciated.
If your cortisol is high, it’s probably best to be on nothing but T3, we have learned over and over. High cortisol will cause the T4 in your treatment to convert to RT3, the inactive hormone.
I would also like to add that Science is based on observation and the information on this site is based on 20 years of observations made by patients worldwide, so to me this is science, even if it isn’t peer reviewed. In addition, it isn’t like this info is not consistent with the research. There is definitely not enough research into T3/T4 treatment and hypothyroid diagnosis, but there does exist a body of research on T3 treatment in thyroid disease and diagnosing thyroid disease that is published by peer reviewed journals and which reflects our experiences. For example, while TSH has been a bad diagnostic tool, it would be less bad if doctors applied the current standards put in place. For example the National Academy of Biochemistry fixed the reference values for the TSH in 2002 to be hypothyroid = greater than 2.5mUI/L. The American Association of Endochrinologists fixed it to be greater than 3.0 mUI/L. If my doctor had followed these rules , as a teen I would have been diagnosed as SEVERELY hypothyroid. Yet the doctors aren’t taught this and they don’t apply it, yet it is totally peer reviewed information! While i recognize the limits and don’t recommend diagnosis by TSH nor monitoring by TSH as the STTM states, if this info had been used, a GOOD number of people who have been told they were not hypothyroid would have gotten the diagnosis and the treatment. So ya, this stuff is not a random FB post nor “alternative” medicine, it is patient observation backed by an awful lot of science.
Janie, if you can stand one more “rant” about the education systems and others can benefit from being reminded of this: textbooks, journals, media reports all have editors. Many times editors remove key point information critical to the concept being taught. They throw valuable information in the garbage claiming irrelevance. This is a large part of why the value of college education always has limits. Experience in the field is UNEDITED education and why an experienced doctor is so important to us, and why experienced doctors must MENTOR newer doctors. College education is still important just not everything, and some educators teach false information from textbooks which promote unproven, untested theory and present the false material as fact. I experienced this in college Fire Science classes as well and recognized the false info we were given quickly as I was already working in a busy fire company in a very dangerous neighborhood, we knew what worked, what didn’t and what works best from experience, no college educator could fool us. We knew when they weren’t honest. I wish life could be simple and we could just trust everyone, that is not the case, especially for thyroid patients, we MUST do our due diligence when choosing doctors and care providers, it’s not easy!! I have been through 6 doctors since my problem started and the doc I see now is a homeopath and promotes natural treatments, less drugs, better health habits and he is the only doc ever to test my Vitamin D3, which was very low and so I supplement that. One problem with being hypothyroid is the fatigue leaves you wishing you just didn’t have to deal with the problem or conduct an extensive search for a doctor, but YOU MUST!! Get a referral from someone like your pharmacist, a chiropractor or other health professionals you trust, and who know what kind of doctor you are seeking. Be persistant!! It is so tempting to give up, don’t fall for it, start talking to people and find the treatment you need. Sorry so long winded but if it helps…
You are so right about the massive information put out in Med school which leads to another major issue, comprehension. Knowing a fact is very different from comprehending a fact. I.E. if you know ” the box is green” but you don’t know what a box is or what green means, you cannot put that knowledge into action by bringing the green box! I know so many “educated idiots” who have vast amounts of memorized facts (like a computer) and are very capable of regurgitating those facts on demand, but have NO CLUE what those facts are or how to use them in a real scenario. Without that ability to comprehend, they are unable to use REASON and apply that in the real world, to the benefit of all. And then add to that the arrogance of education and you have a person who refuses to consider that they are wrong or anything less than perfect, and therefore, unwilling to learn, a dangerous combination that takes lives (in many professions, fire service included). I believe that accounts for some of the poor quality service but a financial incentive to keep us sick, and keep profitting from the sale of medications is a huge factor in this too. No one has actually found a way to rpair the damaged or weak thyroid, just replace the hormone for the rest of your life at a tremendous expense. Please someone FIX (anything)!!!
Hi Jerry, and thanks for writing so well about some of these thyroid issues. I really liked reading what
you wrote, probably because I agree there’s a lot to be fixed with thyroid treatment, diagnosis, etc.
I’m doing a petition to get better treatment for thyroid patients….I was wondering if you or anyone
on here might like to sign it? (Janie, if you want to delete this, I’ll understand–can’t blame a gal for
trying though, right? LOL) The link is https://www.change.org/ThyoidBetterTreatment
I’m directing it to the Biden Adminisitration….asking for more funding for new and better treatments for
both low and high thyroid, earlier & better testing and diagnosing of thyroid problems, better education
for doctors on how treating the thyroid well can help prevent other problems from starting, better
oversight of the drugs we already do have, etc. I think I need a ton of signatures to get attention;
I’ve got over 1000 so far, but I doubt it’s enough. Jerry, if you can sign and share this, and anyone
who’s reading this could sign & share, too. it would help. We need to work together to change things….
Thanks. Petition is done in memory of my brother, Jordan, who should’ve had an easier time getting
his Hashimoto’s diagnosed earlier and treated better. I believe this neglect led to a bad liver for him,
and now he’s not here, anymore (he didn’t even drink). I miss him a lot… changes must be made.
I recommend getting a good team of Doctors. I got a naturopathic. After I got her help, I no longer need thyroid medications. I was on Armour & Levo. I had a pharmacist treat me and that was the best doctor I ever had. I got this one at a compounding pharmacy. She knew how I felt and what I needed.
I think a huge part of the problem we are having with doctors is in the education system. For those who have total trust for a doctor, remember that doc is human, subject to error and integrity or lack of also. Many med schools apparently are not FULLY educating the med students on thyroid issues. That doesn’t mean all doctors are bad but we must seek those doctors who have not only higher levels but higher quality education. The education problem is common in all professions. The other problem we seem to have is a tendency to do whatever someone, who identifies as an expert, wants us to do. Is this person really an expert? By whose definition? I know from decades in the fire service that you ONLY GET GOOD AT SOMETHING BY DOING IT OFTEN. Do we really check the experience level and educational background of every expert we listen too? Nooooo…Truth is we must evaluate every treatment and recommendation we get from our doctors and compare with what we know to be TRUTH. One little trick from Fire Investigation class is to ask your doctor some questions you already know the answer to. Is the doc accurate, honest, well informed, and experienced in the field? I believe that “Book Smart” is not smart, because if you “can’t do it, you don’t know it”. So I sought not only a doctor who was willing to prescribe NDT, but one who had many years experience with NDT so any problems I had with the switch would be recognized and dealt with properly. So again Janie, thanks for being America’s most useful source of thyroid information and for keeping this website up to date so that we remain as informed as possible. You are changing lives!
Thank u for that, Jerry.
And one thing about medical school (because I watched it in a family member of my husband’s) is that it’s simply stuffing every medical school student with massive, massive amounts of information. And they come out thinking that with that kind of information stuffed into their heads, they must have the end all of medical knowledge…but they clearly don’t when it comes to thyroid and related. I wouldn’t have had to create what I have if they knew what they were doing. They simply are not paying attention to what is going on with their patients and how so much of patient experiences contradicts with the bad information that was stuffed into their heads.
I’m a senior on Medicare. After breast cancer radiation 7 yrs ago my thyroid tanked & it took 18 months to get believed by docs. I also have a connective tissue disorder, MCAS & Hashimoto’s. I live in a large city but can’t find a doc who will prescribe NDT. I have very negative reactions to levo & all synthetics with the worst being Tirosint. When docs see my health history they try to get rid of me ASAP. I’m now on Thyrovanz which is the best thing I’ve used but now have no doctor care or labs to check. Can’t afford functional medicine docs. Should I just order online tests and relax? Thanks!
I have been on Armour for years with good results and no side effects. My primary care Doc. sent me to an endocrinologist and she was livid that I use Armour said its not FDA regulated, cause brain damage and heart issues!she has now switched me to Tirosint 112mcg. I have had bad reactions to Levothroxine and others. SHE claims this Tirosint has no side effects. I was fine on Armour! Not sure If I even want to try this. We stuff. ANYBODY have issues with Tirosint?? Please tell me.
Diane, I think most informed patients would walk out on a doctor like that. His comments are just plain idiotic. There are MUCH better doctors out there.
I’m a senior on Medicare. After breast cancer radiation 7 yrs ago my thyroid tanked & it took 18 months to get believed by docs. I also have a connective tissue disorder, MCAS & Hashimoto’s. I live in a large city but can’t find a doc who will prescribe NDT. I have very negative reactions to levo & all synthetics with the worst being Tirosint. When docs see my health history they try to get rid of me ASAP. I’m now on Thyrovanz which is the best thing I’ve used but now have no doctor care or labs to check. Can’t afford functional medicine docs. Should I just order online tests and relax? Thanks!
I am on Armor NDT at 15 mg. I have been dieting for the last 5 months. My FT3 is 2.5, FT4 is 0.81, TSH is 3.28 (truly irrelevant), and RT3 has gone from 11.9 to 14.8. I feel horrible. I have recently started with a dietetic coach who is reverse dieting me by slowly increasing calories and decreasing vigorous exercise. I am exhausted, anxious, and feel like crap. My doctor will order whatever lab tests I want, but I’m not sure the next step to take? Continue to reverse diet to repair my metabolism or add T3 to my regimen to make up for my very low FT3 levels? Would it help me feel better or is there something else I should do first? I am an RN and haven’t been able to find information for my unique situation anywhere. Thank you Janie!
When we are hypothyroid, those are the kind of labs we see i.e.low frees. We also see labs like that with low iron. And since low iron can push our RT3 up, we can’t be on very much t4, and instead focus more on T3 in our treatment.
Christine, I began to feel better when I started to take some multi-vitamins, which I took at least 3 times a day.
These were very good vitamins by Dr. James Wilson the Adrenal fatigue protocol. They are very powerful vitamins and works wonders. I took them 3 times a day then later on when I felt better, I cut down to 2 times a day.
I also took the Armour & levo at bedtime. I discovered if taken in the morning, most of it ends up in the toilet. These thyroid medications might might be “water soluble,” which means is depletes thru the urine. I instantly felt 98% better when I woke up. I began to feel 98% better taking the thyroid meds at bedtime. I had my last meal then only had water for the rest of the evening then took the thyroid meds at bedtime.
For me, weighing at 178 pds, I learned to walk 5-7 miles a day and it came off. then later on walked less, went around the block in the morning then again later on. One of them was just to move and the other I would walk fast. I don’t think rigorous exercise is needed so save you energy for something else. You should feel good after walking and not sleepy or lethargic. If you do then you need a multi-vitamin. My health improved while adding a multi-vitamin.
If most of any working NDT was going in the toilet, people wouldn’t feel as good as they have felt. So there’s reason to doubt it. But it’s very nice reading how much better you feel!
As far as taking thyroid meds at bedtime, yes, there have been others who have felt great doing so. It may be also about giving ourselves T3 when the liver is doing its job to clear out toxins during the night.
Theresa Renee Smalley
Sorry one more thing!
My Aldosterone is 1.8
Renin Activity is 1.55
Any advice would be greatly appreciated.
Theresa Renee Smalley
So far my labs are as follows:
AM Cortisol 1
Free T3 2.2
AB Anti thyroglobulin <1.0
AB Antimicrosomal Titer 11
Total T3 98
Reverse T3 8.9
Free T4 level 1
Iron saturation 23%
Iron binding capacity total 302
ACTH stimulation test
Baseline cortisol level 7
30 mins later level 20
60 mins later level 7
Does this all point to hypothyroid and adrenal insufficiency?
Finally got my doctor to prescribe Hydrocortisone and going to wait a week before adding Armdour.
Theresa Renee Smalley
My rT3 is low.
What does that mean
It means you are lucky!
Hi, I pray you and your family are safe and healthy. I found your website while searching for natural treatments for hypothyroidism. I have been taking levothyroxin for over 5 years, currently on 100 MG. I understand this poisonous medication is man made with a lot of chemicals that has caused a domino effect on my body (weight gain that’s impossible to loose;hair loss/thin hair; insomnia ; and I believe constant migraines; high cholesterol and pre-diabetes). I want to get off this poison, I want my life back, my body and hair back. I understand that Armour and Nature Throid are currently on recall, do you know of any alternatives or do you have any recommendations as a replacement for these two?
Hi Shanita. It’s not that the synthetic version of T4 is poisonous with a lot of chemicals. It’s neither. It’s a well-done synthetic product. It’s more that we aren’t meant to live for T4 alone. Even a healthy thyroid gives us direct T3 with the T4, which being on nothing but T4 doesn’t do for you. https://stopthethyroidmadness.com/t4-only-meds-dont-work
Also, Armour was not recalled. It’s a fine thyroid treatment and very available. https://stopthethyroidmadness.com/natural-thyroid-101
QUICK QUESTION: I’m on NP (and so is hubby) and my BW has been consistently pretty good with the ranges (although i have Hashi’s, i don’t see where the thyroid supplementation would be different) and my hubby’s #’s are the same as mine on the same dose so should we have to be switched to Armour? thanks!
Hi Susie. I don’t know what BW stands for.
Oh, sorry, Janie! Blood work. He will be starting B12 soon and doc is upping his NP thyroid by 30 mgs and i wanted to know which one would be making him feel better, so i wonder if he would be feeling the increased dosage soon?
If…and I do mean if..NP is working again, the NP.
Break the pill in half and see if you smell what people are calling cat piss.
I did and put it almost in my nose LOL and faintly yes cat piss but not strong at all. But we’ve been on it a very long time and labs reflect being treated but his dose was lowered 5 months ago (everything was looking good with blood work) and since then he’s been freezing, etc. so doc wants to put him back on the 30 mg that was lowered, i wanted to know how fast he would feel some symptom relief. If it does smell, what are we to do?? 🙁 Switch to Armour? That is so expensive especially at the dosage we’re both on (same as on Armour, 210 mgs daily)
Good thing the doc is listening to your husband and giving him back the 30 mg he withdrew. We usually feel relief within several days because of the direct T3 in it, and more time because of the extra T4 converting to T3, too. And do consider what’s on this informational page: https://stopthethyroidmadness.com/optimal
Do know that now this is just about ME: I am not interested in putting something in my body for the rest of my life that has a cat piss smell when before it didn’t. But please decide what is right for you. More important is what is in the informational page.
Janie, I hope your husband is on the mend. I am so grateful for all the information you have gathered and provided over the years. My thyroid journey began 20 years ago, partial Thyroidectomy a year later (pathology report found cancerous nodule, endured 10 years of being under treated on T4 by an Endo who only went by TSH and FT4. Did the usual song and dance around all my symptoms. I hit bottom and started researching, found STTM, a functional medicine women’s practice and fired my Endo. Adrenal issues, cortisol issues, low Vit. D, low iron, RT3…I was a mess. Worked on fixing all that and switched to NDT and it was so good to actually feel human again. Well, the piece of thyroid they left has become multinodular and quite large. Had an ultrasound and report came back that there is a very suspicious nodule. My naturopathic Doctor sent referral to an Endo for a follow up and biopsy. I dreaded this appt. and it turned out exactly as I knew it would. They haven’t changed their philosophy at all. He implied Naturopaths are quacks, said the level of dose she has me on is malpractice (120mg NP thyroid) because my TSH is well below 1 (FT4/FT3 #’s are optimal for me). Said having a TSH so low will cause osteoporosis and heart attack. Said TSH should be between 1-2. Said NDT should not be used because it is has the wrong T4:T3 ratio. He wants to put me on synthetic T4 with Cytomel and bring my TSH to between 1-2. Also said I was taking too much D3 (5000/day) It’s very hard to keep my levels adequate. Did a quick 2 minute Ultrasound and said the nodule doesn’t look cancerous (not even sure he was looking at the correct nodule). He agreed to do a biopsy set for next week and also having bloodwork done. I was so upset when I left the office. The fight is on as this time I have an arsenal of research behind me. Plus 10 years of hell on T4 only and 9 years of feeling human and happy on NDT with a TSH well below 1. Why do we still have to fight to be listened to and treated to our symptoms, not just the outdated and incorrect labs and ranges. Ugh!!!
I agree with your UGH. Doctors are clearly NOT LISTENING to patients. That is what constitutes malpractice to me, NOT being on 120 mg of desiccated thyroid (which underdoses the vast majority!!)
Update: when my Dr. read the Endo’s notes she was furious and told me she almost ripped them up. She has another Endo she sent a referral to who is “OK” with NDT but he specializes in reproductive endocrinology so not sure he will see me (I’m beyond that stage!). Hoping he will. I just can’t go back at this time to the other Endo so I have cancelled the biopsy and blood work for now. I wish someone besides an Endo could do the biopsy. He even said the radiologist who reported the TI-RADS 4 nodule on my ultrasound didn’t know what they were looking at. So he badmouthed my Naturopathic Doctor AND the radiologist to me!! I have absolutely no respect for him. Not going back.
My doctor agreed to let me go back to Erfa thyroid (I used it in 2012-2015 until it became unreliable). In the past year I have done poorly on my usual doses of the t4-t3 combo (112 plus 10) and remembered how well I was when using Erfa so long ago. I was thin, healthy, and energetic. Now I am weak, obese, and both tired and hyper all the time. I was determined to get off Synthroid. I thought, OK, in 6 years they certainly must have corrected the bad batches of Erfa. Finally I got them today, 30 mg which can be increased as needed, and will start it tomorrow. I note that it has no smell, when previously it had a definite pork smell (not bad, just pork). I also note the pills are shiny. I am hoping against hope that whatever they are doing, these pills will work. Does anyone who reads here currently use Erfa, and has it been good? This one expires 06/23. I plan to start with 30 mg and increase to an optimum dose. It’s a grand experiment. If it fizzles out because the pills are still bad, I’ll just make do with the synthetic again.
They haven’t at all been as good as they used to be, even now. Try chewing them up first and see.
This is now my 8th day on the new Erfa. I want to report that it is working. They fixed it. Since the first dose I have had a new feeling of well-being, no food cravings, no depression, a loss of 5 lbs. in 8 days, increased stamina and energy, better sleep, and complete lack of anxiety. I am thinking way more clearly. I am so much better I can’t even explain except to say that I am excited every day now and so looking forward to raising the dose to have even more improvements.
The pills are soft and easily chewed. They have a little chemical taste mixed with the meat taste, not unpleasant. I am so happy with these pills that I felt I must write it here in case anyone is wondering about trying them again.
If Erfa has truly improved, why oh why did it take SO many years to do so? Patients were complaining about it YEARS ago.
Tell me–is this chemical taste possibly akin to the smell of ammonia, or kitty litter, or cat piss? Smell it again and let me know. Because porcine NDT NEVER used to smell like that. And it bothers me what we are consuming daily and where it’s coming from.
No, there is no smell or taste of cat pee. The taste is not disgusting when I chew it up. There is no smell at all when I open the bottle. I can’t describe the taste which is slightly chemical, maybe a little sweetener with pork but it resembles the old taste enough that it is not alarming. The pills are shiny and I know the old, reliable pills were matte.
Of course I’ve been wondering about the worldwide supply of dried pork thyroid. I took a leap of faith to see if it was OK now, and whether they’d fixed the problem with the Erfa. Since I am so much better, I think they did.
Suze, is the ERFA still working? Armour doesn’t work for me at all. Made me sick. I took the Thai Thiroyd that i had stashed away, after trying Armour and was fine, but ran out. Taking old WP Thyroid for time being but almost out of that too. Everything else is recalled, and I can’t seem to place an order for Tru Thyroid. Since I have no Thyroid, this is not optional. The only choice I see at the moment is ERFA which my doc will prescribe if I ask. So my question to you is: Is the ERFA still working for you now that you’ve been on it for about a 4 or 5 weeks. Thanks for your help.
It could be possible you weren’t optimal on that Armour??
Hi Janie, I was reading the “History of desiccated thyroid as a grandfathered in, yet “unapproved drug” that was followed by this statement in red “But the FDA considers it an unapproved drug by 2006, sadly, in spite of earlier being grandfathered in.” I wanted to make sure I understood you correctly; in 2006 the FDA officially calls it an unapproved drug and removes the status of “grandfathered in”, is that correct?
Currently, the FDA has a page of unapproved drugs: https://www.fda.gov/drugs/enforcement-activities-fda/unapproved-drugs. This statement is made: “The law allows some unapproved prescription drugs to be lawfully marketed if they meet the criteria of generally recognized as safe and effective (GRASE) or grandfathered. However, the agency is not aware of any human prescription drug that is lawfully marketed as grandfathered.”
The FDA has also changed NDT’s category from Thyroid Tablets to Biologics, which further impacts NDT companies. In the warning letters sent to RLC Labs and Acella Pharma, this paragraph was included:
reflect that your products are intended to treat a disease or condition. Therefore, your products are drugs as defined in section 201(g) of the FD&C Act [21 U.S.C. 321(g)]. Your products, which contain thyroglobulin (an alpha amino acid polymer with a specific defined sequence consisting of 2770 amino acids), are also biological products as defined in section 351(i)(1) of the Public Health Service Act (PHS Act) [42 U.S.C. 262(i)(1)] because they are a “protein” as defined in 21 C.F.R. 600.3(h)(6) or are “analogous” to a protein because the identified biological product (i.e., protein) component in these naturally derived mixtures is necessary for the activity of the product and contributes to achieving the intended therapeutic effect.
Based on the information your firm submitted to FDA’s electronic Drug Registration and Listing System and the information collected during the December 17, 2019 — January 7, 2020 inspection, FDA has determined that your firm is distributing NP Thyroid (also in RLC Labs warning letter), a biological product, without FDA approval or a valid biologics license.
We encourage you to contact FDA’s unapproved drugs coordinator, Dr. Sally Loewke, at 301-796-0710 for assistance in communicating with the FDA on the application process for your unapproved biological product.
So far, I have not found such a letter to Allergan for Armour Thyroid. By the way, AbbVie did purchase Allergan, however Armour Thyroid is still in the hands of Allergan. Allergan will now become an arm of Abbvie. https://www.instagram.com/allerganaesthetics/ The logo they are using says Allergan Aesthetics an AbbVie company, but I have no idea why Armour is included in that. If you use this website: https://www.abbvie.com/our-science/pipeline/armour-thyroid.html It tells you that Armour is being investigated. Recently Allergan was doing an in house investigation.
BACK TO: So why are Acella’s products still on the market and RLC Labs products are not?
Just thought I would pass along this information to you which may also be of benefit to your readers.
I don’t know what to do! My TSH is fine of course and no one will listen to me about my thyroid.! I have nodules, difficulty swallowing, tachycardia in the 120-140 range every afternoon, it starts at 1-2 pm with shaking. I also have low grade fevers, weight gain, night sweats, and my tibc is normal but my % is 7and my fe is only 25. I’m anemic with somewhat high white counts at times. I take iron and K but it doesn’t help my levels. What do I do? I’m getting really sick by the day…
Hi Keri. Sorry you are going through that with doctors. And sounds like you may now have an adrenal problem causing those shakes.
As far as improving iron levels, here’s what we have learned to raise it: https://stopthethyroidmadness.com/iron
Here’s the test to see what is going on with our adrenals: https://saliva-cortisol.squarespace.com/ And chapter 6 in the updated revision STTM book (blue gray background) explains how to treat the results.
And to find a better doctor is about calling around and around and ask if this or that doctor is open-minded about what you have learned (from STTM). Or ask in groups. You can save time and money by finding out ahead of time if the doctor is worth going to. Better ones are out there. We just have to do the work to find them. Hang in there!!
i hope your husband is doing better terrible about agent orange one more reason to despise monsanto. thank you janie so much for all that you do and best wishes to you both
I really appreciate that, Karen.
Janie: I’m sorry to hear about your husband’s health struggles. I’m glad to hear both of you are doing better now. I’m in the process of weaning off my cortisol temporarily to do a saliva test to get an update on them. I’m currently taking only T3 meds. I would like to get to the point where I can keep my thyroid functioning by just taking iodoral. Is there anybody that keeps in contact with you that has successfully gotten off thyroid meds and just take iodoral and supporting supplements?
Oh and another thing, when Yahoo closed all it’s forums did the iodine and adrenal group die or did they get moved to another place?
Hi. I know of one woman who swore that iodine alone was all she needed. But down the line, she finally had to admit that it wasn’t enough and she got back on thyroid meds. So perhaps the problem with people saying they are doing well on iodine alone is that they haven’t given it enough time?
Check Facebook for iodine groups. You just have to watch carefully cuz some of them have complaints by people and some are good.
Stephanie Buist has a Facebook iodine group. There’s also the Iodine Workshop on Facebook. Miss Lizzy has a informational group.
Hi, I just wanted to say thank you so much for all your sharing of information regarding thyroid. It is truly life saving. I can’t begin to tell you the hell I’ve been through with severe heart palpitations and “hyper” like symptoms. Problem is….I have always been diagnosed hypothyroid and was managed well on medication up until two years ago. I’ve now gathered this changed due to a slow decrease in my iron levels (they are fairly low but not anemic i.e ferritin at 18 etc). I’m still in the testing phase of cutting back on my levothyroxine until I can get iron up. Here is a great JAMA article on some case studies of patients not tolerating thyroid medication until iron is optimal: https://www.mayoclinicproceedings.org/article/S0025-6196(11)64193-1/fulltext
I initially suspected hyperthyroid due to the symptom profile I was experiencing and went to my GP for lab testing. To my dismay all labs came back normal. This is where I started the journey from hell. If you Google “Heart Palpitations nightly” hormone imbalances come up. So I chased this theory for over a year. I was put on bioidentical progesterone, told I had PCOS and was sent on my way. A year later I sought a second opinion and I do not have PCOS. I am very discouraged this doctor never listened to me or my lab work. She was convinced I had PCOS despite excellent insulin and hormone testing. Always get second opinions! However, the horrible panic and heart palpitations didn’t stop. I went to cardiologists, endocrinologist, ER visits for heart attack sensations, functional medicine wellness doctors and even explored Roemheld Syndrome and vagus nerve dysfunction with a GI specialist. I did it all but my labs and everything kept coming back clear and in great health. (Many docs didn’t test T3) I was falling apart internally.
The only time labs didn’t return normal was on NP Thyroid in 2019 and my Free T3 was through the roof. At the time Acella pharmaceuticals was under scrutiny for super potency of NP Thyroid so I switched back to levo. This helped but the heart palps returned. I struggled with insomnia, hair loss, weight loss, horrible anxiety for years. I almost had to quit working. I even started to experience myoclonic jerks at night falling asleep. They are horrible when you’re heart is palpitating. True terror. I remembered your info on iron and I had attempted to get my iron up a few months ago, felt mildly better, but the heart palps returned. I have now since gathered from the article I mentioned above that one might need to temporarily go off thyroid medication until iron is restored and then resume medication regimen. I believe this is currently helping.
I hope this info helps others. I never want anyone to experience the almost nightly terror of heart palpitations that I did. This is also an interesting article on how women’s hormones/estrogen correlate to thyroid binding globulin and why symptoms remit at certain times of the cycle: https://thyroidproblemsdoctor.com/thyroid-hormones-cycle/
I wish everyone the best in returning to health. If anyone has suggestions or have experienced the T3 pooling from low iron and successfully addressed iron and resumed medication please let me know! I unfortunately will stay with levo for now since all the desiccated thyroid meds sent me into a very big problem with T3 pooling. Thank you again for saving a life.
Hi there Laura. T3 doesn’t pool from low iron. It pools due to a cortisol problem. Start with this informational page: https://stopthethyroidmadness.com/pooling
Thanks for the reply! I guess I’m a bit confused. On https://stopthethyroidmadness.com/ndt-doesnt-work-for-me/ I read under reason number 2 that low iron could cause symptoms revealed by T3. Maybe I misunderstood the pooling hypothesis. Any thoughts on why low iron would cause extreme hyperthyroid like symptoms in patients that are hypo? Luckily my cortisol levels are all good. I had those checked thanks to the info provided on this site! I was curious anyone’s thoughts on the case studies link posted regarding patients with anemia who struggled with hyperthyroid-like symptoms starting hypothyroid meds. Once their iron levels increased they were able to achieve euthyroid with medication interventions and the heart palpitations, anxiety, etc that once existed on hypothyroid medication ceased. Any info is greatly appreciated to get myself out of these bizarre hyperthyroid spells! My labs reveal thyroid levels in range (albeit T3 is sometimes high). Thank you again for this wonderful wealth of information!!!
Hi Laura. I can see why you were confused!! It was my fault. I didn’t write that section well, mentioning the cortisol and iron issue in the same sentence! So I didn’t separate how cortisol causes hyper-like symptoms, and low iron causes rising RT3.
Here is how I rewrote it all as an update (and THANK YOU for pointing this out):
2. Having either inadequate levels of iron or too low/too high cortisol.
If upon raising a thyroid treatment with T3 in it, such as a working NDT like Armour, or T4/T3, or T3-only, and we note having hyper-like symptoms, that can point to the T3 revealing a cortisol problem. i.e. cortisol isn’t getting to the cells well due to that cortisol problem and moving high in the blood.
Examples of “hyper-like” symptoms when raising T3 in our treatment can include one or more of the following: anxiety, shakiness, fearfulness, racing mind, simply feeling racy, heart palps, high heart rate, even insomnia or nausea, or any strange problems. They are all due to a cortisol problem.
Or if we have a rising or high RT3 when using a treatment with T4 in it, that can point to low iron (also inflammation or high cortisol).
In other words, it’s not a case of “everyone is different” or the need to return to T4-only, patients report discovering. i.e. T3 isn’t “causing” our problem; it’s “revealing” our problem!T 4 converting to RT3 can also reveal the problem of low iron, inflammation or high cortisol.
So Laura, I happily give you a GOLD STAR for mentioning your confusion. It sent me to reread it, and go OOPS, and rewrote it.
Hi Janie, thank you for clarifying!! I appreciate that you took the time to help clear that up for me! I’m starting to think maybe my cortisol levels being on the lower end of each 4 point range might be the problem as well. Your summary of low cortisol symptoms with NDT or T3 medications is spot on. Eerily so. I can’t thank you enough for creating such a resource of information. I grew up having such a positive view of doctors and always being easily helped, but these last 2 years have truly lost my faith in medicine. It’s so disheartening. I just don’t understand why so many MDs won’t consider alternative or new understandings for complex disorders. Thank goodness for people like you and other patients who are willing to share their journey so others may hopefully heal as well.
Do you know why Free T4 would be elevated and TSH and Free T3 in optimal ranges on levothyroxine? I was on NDT for years but started getting what I suspect is T3 pooling (now I know that was likely related to low cortisol) and OF COURSE the endo switched me to levo. I’d like to work back to getting on NDT if I can find a doctor willing to do so. I just thought I’d ask what makes T4 high? Years ago when I was first diagnosed I was on levo and all labs were okay. Is this a result of being on T4 only medication? As listed above I’ve had quite a bit of problems with “hyperthyroid-like” symptoms and currently on T4 is on the higher end. It just got me thinking that maybe T4 is causing these hyper symptoms. (At one point when I was on NP thyroid my T3 went through the roof and since their medication has been recalled for super potency and likely my cortisol issues. Now that this is being corrected I’d like to work back to NDT). Thanks for any help you could provide me. I’m just trying to find some peace until I can find a doctor willing to prescribe NDT.
Being on nothing but Levo simply doesn’t work for the vast majority. And a high T4 implies you kept raising to treat continued hypo symptoms, but again, it doesn’t work.
I just thought I would respond here in case anyone else should ever stumble across the symptoms listed in my original comment and need help! I hope this saves someone as much suffering as I experience! I wanted to follow up that after much more exploration I’ve finally learned that I’ve been way overmedicated on thyroid medicine. (I’ve gotten my iron and cortisol in good ranges so those confounding variables have been ruled out.) Nine doctors later, I finally came across an endo who said my symptoms sound like overmedication. HOW DID NO DOCTOR THINK THIS?! My symptoms were classic and even I thought that at first!
As best I can gather, going gluten free years ago restored some functioning to my thyroid or perhaps healed my gut and I didn’t need as much thyroid medicine. One year after going gluten free I began experiencing acute symptoms although they were probably emerging before then. Unfortunately, my labs never strongly reflected hyper. Oddly, I’ve joined some forums of others who have been overmedicated that had similar experiences of labwork not showing hyper. All the doctors I saw would only go by labs and not my symptoms. Only a few labs showed maybe too high of FT4 and once on NDT my FT3 was very high. Otherwise labs were on the upper ends with FT3 and FT4 but not excessive. I’ve gone from 90mcg of Armour (150mcg equivalent levo) to being on levo 75mcg and my labs still remain in range and good. It has been an intense journey. My goodness. Should anyone read this, please know it is not a quick resolution if you discover you’ve been overmedicated. You have to taper down very slowly. Quick shifts in dose can cause some bizarre hypo mixed with hyper symptoms. One main one others and myself have experienced is peculiar muscle twitching and spasms. For me it was most prevalent at night.
Also, check into histamine symptoms as well. From what I’ve read, hyperthyroidism can increase histamine receptors and going hypo by trying to decrease the dose too quickly can increase histamine, so one can experience a perfect storm of histamine overload from over production of histamine with an abundance of histamine receptors. I strongly suspect this is what led to the intense itching, muscle spasms and twitching and worsening of symptoms at select times in the menstrual cycle since estrogen can increase histamine as well. Of course there were the usual other key indicators of hyper such as sweating, heart palpitations, frequent urination, insomnia, panic, weight loss despite eating, hair loss, etc. After two years of being on too high of any thyroid meds, NDT/levo, and cutting back 3 months ago, I’m finally leveling out. It is a long, long process that has good days, bad days, then slowly more good days than bad days. Be patient and don’t step down dose too quickly! It will get better and it takes the body a very long time to “detox” from overmedication if you’ve been on too high of a dose for too long. I hope this information can help someone should they be experiencing similar symptoms!
Can you be more specific on what implied that you were overmedicated?? Labs with ranges?? A high FT4 doesn’t always mean overmedicated. It can mean RT3 is climbing. A high FT3 doesn’t always mean overmedicated. It can go high due to a cortisol problem.
Hi Janie, My apologies for just seeing your response! I will never understand what I’ve experienced over the past few years but essentially I was over medicated with thyroid medicine (both when I was on Armour and switched to Levo). My FT4 was never all that elevated (apprx 1.8 with an upper range of 1.7). I had a FT3 once that was something along the lines of 4.7 (upper range 4). What’s bizarre is both myself and this whole group I’ve chatted with in an over medication forum never had labs that illustrated being over medicated. This is why I can’t fully fault the MDs I saw. They solely went by labwork but never listened to symptoms. Yet when our doses were decreased we are still optimal on medication with lab ranges. Some said eventually there’s showed overmedicated but not all and not all the time. It honestly makes me question how reliable labwork is with thyroid given how much it can vary based on health status, time of day, menstrual cycle, etc. But it’s truly odd. Of course my endo doesn’t really acknowledge nor is able to explain it but my levels are still the same despite having decreased my dose in half for 3 months now. All my hyper like symptoms have mostly resolved (minus the horrible tinnitus, sheesh!). It does flare up during certain parts of the menstrual cycle but to be expected given the close relationship with thyroid and hormones. Overall it was a slow step down in symptoms. I suspect it will take a while to resolve with some having shared it took 12-18 months to resolve over medication. Nonetheless, it’s just peculiar that my labs are still good at half my dose. Why did they never show being over medicated?!
Here’s what we’ve observed and experienced for near 20 years: If the top of a range for FT4 is 1.7, we can’t go over 1.4 without seeing the excess T4 being converted to RT3 by our bodies to clear out the excess T3. If the top of the range is 1.8, we can’t go over 1.5 without seeing the same. So your labs outright showed over medicated!!!
And no, we’ve not seen it take 12-18 months to clear out! That means those people may have had other issues causing problems.
You have no idea how much relief and joy that brings me to hear your input that my labs did indeed show being over medicated!!! Also, that I don’t have to anticipate 12-18 months to feel normal! It’s already very much improved in the course of 3 months but we are also being slow to taper so I’m sure that is dragging it out. The “withdrawal” of balancing decreasing the dose without going hypo is a journey in and of itself as well. Nothing about it was making sense back when I was trying to figure out what was going on but my labs weren’t “that high” per my doctors. I sincerely appreciate all the feedback and insight you have collected on your website. At the risk of sounding a tad dramatic…it’s been lifesaving. Thyroid problems in any form are dreadful and through process of elimination with cortisol, iron, etc I am finally on the mend. Your website has been a much welcomed and appreciated compass.
Hi Janie, I hope you or anyone can help me figure out some lab work and symptoms that were occurred at the very onset of my over medicated horrible thyroid journey. I can’t for the life of me make sense of what has happened over these two years through all that was stated above in my symptoms. While I’m feeling much better I still struggle with some remaining histamine problems from being over medicated. But I just want to make sense of this all so I hopefully never go through this again. In 2019 when I originally experienced hyperthyroid like symptoms which in hindsight could’ve been a cortisol problem, my labs initially showed TSH 3.9, FT4 .91 (range of .82-1.77) and FT3 3.1 (2.3 to 4.1). I was on 90mcg Armour at the time. I was incredibly hyper feeling but my labs showed almost hypo. I do think my ferritin levels dipped a bit, maybe around 40. What could have caused these horrible symptoms that have continued for two years despite changes in my medication and my labs changing. I then went on to take 100mcg levo with labs all in better range TSH around 1.94, FT4 1.5, FT3 3. I wasn’t feeling better. Still had all the hyper symptoms. This continued no matter what meds I took including NP (which pushed my FT3 to 4.5 and felt terrible!), back to levo, and then to Synthroid. My dose was lowered finally after a doc realized I was likely over medicated. I’m currently at 75mcg of Synthroid and probably need to integrate a little more since my TSH is currently at 3.04, FT4 at 1.5 and FT3 now dipped to 2.5. I guess my question is, why in the beginning of all this did my labs show slightly hypo but my symptoms were hyper? I never had RT3 checked. Could it have been elevated? I never had cortisol checked until later either but that is all great in my recent saliva test. Is this a two year long hashi’s flare? From what I’ve been reading histamine seems to be a big problem with thyroid whether over medicated or under. I think going gluten free messed with my thyroid and I didn’t need as much medication but why did my labs off and on show hypo or hyper? This is bizarre and any input would be appreciated!!
Whoops, I realized I didn’t address your question regarding symptoms and cortisol. I do think cortisol was a piece of the puzzle initially but I’ve completed the 4 point saliva cortisol test back this Spring and all was great. Levels looked just like the comparison chart! My symptoms have included severe heart palpitations of unknown etiology (cleared by cardiologist), insomnia, sweating, weight loss of 20 pounds in just a few months with no change in diet, feeling hot often, frequent urination and BMs, excessive thirst, tremors, feeling “keyed up”, panic, anxiety, acne, muscle weakness, poor exercise tolerance, head and ear pressure, muscle spasms (more so when decreasing dose…read in some JAMA articles this has something possibly to do with the over abundance of thyroid hormone receptors created during over medication and now there is a withdrawal like effect due to receptors not being filled and affects neuromuscular functioning). The symptoms go on and on but all are spot on for hyper thyroid. Doctors have ruled out vagal nerve disruption, adrenal tumors including pheochromocytoma, hormone imbalances, pituitary concerns. Finally a new endo I visited with thought over medicated given my dose was very high for my BMI. Sure enough, as I’ve tapered down it’s like an internal release has occurred! The horrible wound up feeling is gone. I can exercise without being winded. I can sleep. No heart palpitations. I’ve put back on some weight. Skin is slowly clearing up. Sheesh! It’s been a nightmare of two years. If you have any insight I’d love to hear your thoughts! I will still never understand how lab work didn’t show the over medication. I had a wellness doctor put me on bioidentical progesterone when I was completing a lot of lab work. Perhaps that affects labs? I wasn’t taking any biotin but was taking some other high B vitamins such as folate and B12.
Janie: I was the one who was getting AFIB and since it kept getting worse, I listened to my doctor and got a cyroablation. So far, so good about stopping the AFIB. I have also been doing a little experimenting with T4/T3 meds for a month then testing;
1 1/2 gr Armour Thyroid (doctor recommended because worried about very low TSH #) for a month; and then 2 gr Armour Thyroid for a month. Reverse T3 on the first option was way too high. The numbers on the 2 gr are the best but waiting for my reverse T3 number.
What I want to check with you is my IRON numbers. I have been supplementing IRON for about 5 months to tweak my IRON up a bit in case that was causing AFIB, and watching my numbers. Now they’ve gotten a little high, so I need to know whether I should stop supplementation or reduce. I stop the supplementing 4 days before the test (and a couple days the week before then started again because test was postponed)
% Sat 43 16-45
Ferritin 66 16-288
Iron Binding Cap 283 250-450
Iron, Total 121 45-160
In Sept 2020:
% Sat 37
Iron Binding 268
Iron total 98
Any help is appreciated
It’s too bad that doctors don’t understand the connection between being hypothyroid and Afib for most of us as thyroid patients. Even with Graves. And all are treatable if the cause.
To avoid being hypo, here is our goal: https://stopthethyroidmadness.com/optimal We also have to have good iron levels, the right cortisol levels. There is a possibility (not a diagnosis, just information to read) that you could have a methylation problems with an iron of 121. https://stopthethyroidmadness.com/mthfr
So both my nutritionist and my doctor were saying it must be HYPER THYROID giving me the AFIB. So just to prove them wrong, I weaned myself off All thyroid meds and I still had AFIB. I strongly believe my problems started with the changing and the recalling of all the NDTs. So, you are saying that it is HYPO THYROID that can cause AFIB?
No, it’s one cause, not the only cause. But since we are a thyroid bunch, it’s always worthy to find out if it’s our hypothyroidism, or adrenal issues that can accompany being hypo, that is the cause. It definitely can be. https://stopthethyroidmadness.com/afib
And BTW, I do have one copy of the C677T mutation (negative for the A1), so any supplements I take have the Metyl-folate and Methylcobalamin versions.
I had added iron supplementation to tweak my iron numbers, now I will hold off since they have gotten a little high.
I have been doing monthly changes of Thyroid Meds(kinds and quantities) with testing so I can see what my best option should be. Has anything changed over the last few months on which brand of NDT is the best right now?
good doctor Rochester NY
Hi my 48 year old niece lives in Rochester NY and is showing signs of adrenal issues and or hypo issues. Need the name of good doctors in Rochester NY area please
Hi Ellen. When it comes to thyroid issues, she first needs to become better informed herself and expect to guide certain doctors in a more equal relationship. There are still too many poorly trained doctors out there in this arena who don’t get it and are not caught up with our our wise information and experiences. https://stopthethyroidmadness.com/things-we-have-learned
Even if she finds a doctor who has been listening to stop the thyroid madness, better doctors will still appreciate her own knowledge in areas that they may not have caught up with.
Thank you for this site! Is Dr Westin Childs information / product trustworthy? His site has great information that seems to line up with what you are sharing here. I will keep reading and reviewing your website and offerings.
Ive been on synthroid for 20 years and I’m struggling to lose weight even on 5 months of 1000 calorie diet. Ughh. I need to take this thyroid issue into my own hands obviously!
I haven’t read his info to state. But just going through the STTM website and books will give you solid patient-to-patient information.
Yes, you badly need to understand this: https://stopthethyroidmadness.com/t4-only-meds-dont-work It will also direct you to what does. 🙂
I’m very interested but I find all this information very confusing and disturbing. Not sure how to process it all. Any suggestions?
That’s not enough information for me to answer.
For 10 plus years I was stable and happy on Armour until it changed. I was put on NDT made by a compounding pharmacy . I did fairly well for years. The beginning of 2020 I had several surgeries. My husband informed me they couldn’t get the ingredients anymore and gave me naturethroid. I took it for over a month. I started having significant feet swelling, hair falling out, and gaining weight. My md did labs. There wasn’t any thyroid medication in those pills. It was filled with hormones snd poison! My labs were out of control. I’m now on 0.88 mcv synthroid and 10 mg t3. I have put on thirty pounds in a year. I walk daily, have never changed my healthy eating habits and do bands and stretching exercises and cannot lose ONE POUND. I was so healthy a year ago. I’ll get my labs done this week. My cortisol is just fine etc. I am thinking of trying Armour again. I plan on seeing a nutritionist as well. I’m miserable.
Take care of yourself and husband. Carole
Carole, this is our hard-earned goal: https://stopthethyroidmadness.com/optimal. And 10 mcg rarely achieves the free T3 goal.
Also, if you were checking your cortisol via blood, we have found that to be a big mistake. For one, blood cortisol is mostly bound, unusable cortisol. Second it fails to test you at three other important times. Here’s what we learned years ago to use instead of blood because it works: https://stopthethyroidmadness.com/saliva-cortisol
My current labs
TSH 0.604 .450 -4.5
T4 1.47. .82-1.77
T3 3.1. 2.0-4.4
TPO. <9. 0-34
Antibody. <1.0. 0-0.9
Labs done the end of March
Still struggling with weight and other symptoms. This used to be optimal for me on Armour but not T3 and Synthroid. Thinking of switching back to armour. Just wondering what your thinking on my labs might be. Thank you. Carole
i wanted to write you.to give â™¥ï¸ you recognition and encouragement â™¥ï¸ for all you have gone through helping your husbandâ™¥ï¸, and getting him through his bladder surgery as a result of agent Orange. Im so glad he has come through it. âðŸŒŸðŸ‡ºðŸ‡¸
You are not only an angel to us, you are so smart,…no doubt you were instrumental in saving your husbands life. I send you prayers and love for you both and pray he will continue to get better. You deserve so many pats on your back!
I’m sorry I couldn’t carry through on delving into our mutually agreed upon project of a much needed recall for smelly stinky batches of NP acella NDT. Thyroid.
I had to have a knee replacement. Soon after we talked, batches and batchesof SMELLY NP Thyroid were recalled.
Nature thyroid was I guess taken off the market completely. NDT has become a problem to get in some way now.
Armour has gone up in price, one pharmacy here ( Denver) has tripled the price if it.
Three a day for three months used to cost me about $100 at Costco. . Now one month of 3 60 mg a day costs about the same. Or more….$120.00 Some pharmacies.
â™¥ï¸Well blessings to you dear Janie. ðŸŒŸâðŸŒŸYou are so brilliant and talented. We are so lucky to have you and im sending my continued prayers for your husband’s health, and for you. XXOO
Hi Elizabeth. Thank you for your sweet encouragement and support. Yes, I guess I’m part of the reason he’s still alive. I did stop the yearly recurring bladder cancer tumors 3 1/2 years ago. The VA wasn’t going to stop that other than damaging him further every time they went in to remove them, year after year after year.
Yes, it’s hell out there. Even though Armour still works today, the expense is ridiculous. But we do still have T4/T3 treatment that works if we get those frees optimal, thankfully.
Hi, I’m 74 and just over a year ago had a hip replaced which was followed a couple weeks later by a serious anemia event requiring an immediate transfusion. For the past year I’ve been taking Thyrovanz 25 mg and it has fully stabilized all of my Thyroid numbers according to my wonderful Naturopath. My current concern is that I’m once again currently not able to maintain my Hemoglobin or Ferritin levels at healthy levels. I was taking Floravital away from my Thyrovanz and then switched to Slo-Fe and took it with my mid morning vitamins – including magnesium. My recent labs showed this was not working, Dr. recommended I take Slo-Fe by itself away from Thyrovanz and Magnesium. I’ve been doing this for two weeks and feel better already. Labs will be redone early April. My main question is: how soon after taking my Thyrovanz in the AM can I safely take my Slo-Fe? Thanks so much for all of your hard work and help.
Hi. We have found it safe to take iron at ‘least’ 2 hours away, but some go anywhere from 2 to 4 hours.
By the way, as the body ages, stomach acid levels go down, which means you won’t absorb nutrients as well. Also, the release of digestive enzymes go down. So we can improve our absorption by taking digestive enzymes and betaine with the iron (and food). We also take as much vitamin C as we can tolerate with each dose, because that also greatly increases absorption.t
Second by the way, compare your free t4, free T3 and RT3 to what’s on this page: https://stopthethyroidmadness.com/optimal We see a lot of people on thyrovanz whose labs show they really aren’t doing well on it.
Hi, Janie, before I go any further I wanted to alert you and your husband to a new documentary titled The People vs Agent Orange. I just found out about it and haven’t even watched the trailer yet.
As far as someone who would rather listen to a doctor than solid information on Facebook or elsewhere, I’m guessing the person quoted is not very old. I was healthily suspicious of doctors when I was young then I nearly died from undiagnosed/untreated hypothyroidism and its horrifying effect on my immune system. I am very nuanced about what I accept from doctors or other practitioners and what I do not. For example, my current PCP is good about hypothyroidism but was in a hurry to assume I have osteoporosis because I have no ovaries (I do not have osteoporosis due to several factors including treatment for my hypothyroidism) and was worried that I have colon issues due to decreasing hemoglobin. I educated him with Stop the Thyroid Madness, preferring to take iron supplements (many thanks for the Bluebonnet recommendation) to having a CT scan, and my hemoglobin is rising. And, please, everyone, do not suggest a colonoscopy. I have a very healthy gut, cannot lie on my side due to fibromyalgia, and do not want anyone sticking anything up my bum!
If I listened to doctors I probably wouldn’t be alive today because I had such a bad reaction to T4 only Synthroid that I just couldn’t take it. The doctor told me I probably had colitis and also prescribed a $6 per pill headache meds for the violent headaches I was getting among other symptoms that kept showing up. I finally quit the doctor and quit the Synthroid. It took me a few years to find out about natural dessicated thyroid from a conversation I had with my sister. All that was over 30 years ago. It’s been very hard to find a doctor that understands and will prescribe natural thyroid as in Canada healthcare is govt controlled. My oldest daughter has recently experienced similar difficulties upon discovering her own Hashimoto’s diagnosis. Your website and now FB page have been a wealth of information to me for much of my journey so thank you very much for all your information from your extensive research
I have tried many times to get T3 as I believe it is the only medication I lack. However I’m really scared about buying it from abroad. I’m 73 years old and been on Levothyroxine for over 30 years. I would value your opinion very much. Shirley
Hi Shirley. We have not yet found one T3 outside of the US that doesn’t work. Some may be weaker than others, but our goal is to raise until we get the free T3 optimal, no matter what we are on. And guess what—there are many in their 70s and older who are soaring on T3!! https://stopthethyroidmadness.com/optimal
If. If I had a doctor who would listen to me, then maybe, just maybe, I might listen to them. But that hasn’t happened in the last 20 years.
But Janie’s site does what the Docs should. Listens, pays attention, says what’s been said. Helps us to make our own decisions about our healthcare
without selling or promoting one size fits all attitudes.
So, yeah. Rather here on FB than being ignored by a ‘DOCTOR’.