I was diagnosed with Hashimoto's in October 2000. TSH above range, FT4 below range, anti-TPO and anti-thyroglobuline through the roof (Ft3 levels never measured).
I was put on Euthyrox 50 mcg and the endo I was referred to said it should be raised until my TSH was <1.5 (ref 0.2-4.5).
It took ten months to find a dosage that achieved that - 150 mcg of Euthyrox. At that time, my TSH was 0.4 (ref 0.2-.4.5), and my FT4 levels 1.5 (ref 0.8-1.8). FT3 levels were never measured.
I felt quite OK on T4 only, but could not lose weight which made me feel terrible. I tried all the supplements available, and even considered the prescription med Reductil (Meridia), only to be told it had been banned...
However, I was able to live a normal life on T4 only, unlike many other patients.
In 2003, I switched doctors after my old one retired, and my new one told me he wanted a slightly suppressed (0.05-0.2) in Hashi's patients, as antibodies are what triggers the autoimmune attacks. So, for the next eight years, I took a TSH suppressive dose of Euthyrox (175-200 mcg daily). My TSH stayed between 0.05-0.2 (with some wild fluctuations) but I felt fine, never had any hypo symptoms...but my weight would not budge. I tried WW, low carb, low fat diets, low calorie diets, you name it...so I ended up convinced I must suffer from T3 deficiency.
In 2011, I consulted a doctor in Belgium trained by Thierry Hertoghe and was put on NDT (first Armour, then Erfa, and eventually switched to Thai NDT - first Thiroyd, then settled on Thyroid-S which seemed to suit me just fine).
For a few years, I felt fine on NDT. My TSH was completely suppressed (<0.01), but my FTs remained in range. They varied, but were never out of range.
Fast forward to last summer. I admit I was stupid, and I now know you should never self-diagnose or -treat. But I was reading DR. Westin Child's blog about how to "flush rT3" out of your body by decreasing NDT and adding T3, and I decided - based on the symptoms list - that I had to suffer from rT3 dominance. If I could only flush it out of my system, I would feel great and the excess weight would just miraculously fall off...I decreased NDT and added 25 mcg of T3 (ordered on the internet) over the course of a few weeks (first 6.25 mcg daily, then 12.5 mcg, finally 25 mcg).
All of a sudden, my FTs were twice the upper normal limit - on 25 mcg of T3 and 1 grain of NDT. My doctor told me to go off t3 and slowly raise the NDT back to the dosage I took when I had normal labs. Which I did. And I thought I was fine until...March 15, 2019, when I suffered what looked like an epileptic seizure. This happened in a public place and I was taken to hospital by ambulance and hospitalised for ten days. Blood tests revealed very high FT3 levels (7.8; ref 1.7-3.7) 24 h after taking 4 grains of NDT. FT4 in range (1.2; ref 0.8-1.8) and TSH completely suppressed (<0.01). I was told to go off NDT immediately and was put on 150 mcg of T4.
While I was in hospital, they sent me for a CAT scan, an MRI, several EEGs, but they all turned out normal. I was told they wanted to try to see if a switch to T4 only, and a normal TSH, would be enough, before putting me on anti-epileptic drugs.
As scary as having a seizure in a public place, and waking up in an ambulance, was to me, it was also kind of a wake-up call to me...I have since read a lot about hyperthyroidism and epilepsy, and it seems hyperthyroidism (Grave's etc) can cause epilepsy, but symptoms go away once the patients are euthyroid following treatment.
I don't have Grave's, but may have become seriously hyperthyroid while on NDT/T3. For some reason, after feeling fine on NDT for several years, and having normal FTs on it, it felt like my body was rejecting it. I cannot explain it, but since going off NDT, and back on T4 only, I feel much better. I feel calmer, more focused, my heart is no longer racing, I am not constantly agitated and sweating, and my appetite also seems to have decreased.
So far, I cannot feel any ill effects from going off NDT and back on T4 only.
The neurologists told me that, when someone presents with epilepsy-like seizures but has no detectable brain damage that could cause epilepsy, they look for other explanations first, and thyroid disease (hyperthyroidism) is among them.
I was told several things: 1. the brain does not know if the excess thyroid hormones come from the thyroid itself or drugs; it just senses there is too much thyroid hormone in circulation;
2. the brain does not react to a suppressed TSH, but to elevated FT3 levels.
Point 2 could explain why I felt well on NDT while my FTs were in range (but my TSH suppressed), but became symptomatic once my FT3 levels were seriously out of range.
This "interim" diagnosis (epilepsy of unknown origin) has really messed things up. I have been slapped with a one year driving ban and can only hope I will be not be diagnosed with epilepsy in the end.
But the idea that taking too much T3 could have caused this is simply frightening. I know I have made terrible mistakes, and that nobody should self-diagnose and-treat based on what they read on the internet. Mea culpa.
But the very idea of ending up being diagnosed with epilepsy simply because I've accidentally overdosed on thyroid hormone...absolutely terrifying.
I will continue to be monitored by neurologists, but so far they have not found anything abnormal so they would not know which drug(s) to prescribe.
Hope you saw the post, and replies, earlier today re RT3 not being the culprit for lots of thyroid problems. Incidentally I had 3 epileptic- type fits in c.6 month period a couple of years before diagnosed hypothyroid...had the scans, EEGs etc and nothing found, so ‘epilepsy’ never attached to them...no one ever suggested the thyroid link, and ENT consultant happy to agree it resulted from trapped nerve/ blood vessel in neck (have long term chronic problem of spine becoming dis- aligned and all muscles from shoulders up become ‘solid’, and I become giddy).
I only know what the neurologists (and one endocrinologist) told me. But the fact is that I have been having unpleasant side effects from too much T3 - the most noticeable ones being racing heart, increased sweating, nervousness, restless sleep, and intense itching all over my body and scalp. All of these problems except the itching disappeared within 72 hours of stopping NDT, and the itching is only about 50% of what it used to be and I see some improvement every day.
I have also gained a lot of weight lately which makes me suspect my insulin resistance (which I used to be able to keep under control with berberine) has been getting worse (and excessive T3 is said to cause insulin resistance).
For some reason, NDT seems to create problems all of a sudden. I have no idea of knowing if my seizures were related to a T3 overdose. What I do know is that there is no visible brain damage that would cause epilepsy. Only the future will tell. But, for now, I feel fine on T4 only.
Also, when I was admitted to hospital, my body temp was 37.9 which is an indication I was overmedicated.
Yes, I'm only now beginning to realise what a powerful hormone it is, and how easy it is to overdose on it. Regardless of whether it was what caused the seizures, excess T3 levels can have some pretty nasty side effects.
Glad you are feeling so much better. Your comment of going hyper is the big clue. If you were diagnosed hypo thyroid you can not become hyper thyroid but you can become over medicated so I feel that's what has sent you down a slippery slope.
I think we also don't appreciate how much change adding in a little T3 can make. I felt about 4 years that I wanted to go back onto NDT but also decided I didn't want to try juggling with T3/T4 as that, to me, sounded much more complicated! (also on any form of T3 your TSH should have been that low, FT4 can fall in the range but FT3 should be high in its range but never over). So the epilepsy chap was right to suggest it could be high thyroid levels but yours were artificially high by over dosing. So if he doesn't know that I think you need to explain that to him and keep an eye on your bloods to make sure that is no longer happening. But your post has given us all a heads up of what can happen when things go not as we intended.
You're absolutely right and I'm glad you point those things out!!!
I told the doctors I was on NDT , but most of them had never heard of it and one said: "Oh, I thought that was discontinued years ago". They had to look it up but told me - as expected - that it contains too much T3 and that nobody with Hashimoto's needs anything but T4 as it will be converted to T3 by the body. Same old, same old...
I am not excluding the possibility I might need to add a little T3 later on, but my previous experiences suggest the T3:T4 ratio in NDT is not optimal for me. If I decide at some point that I could benefit from a little T3, I expect half a grain or possibly one grain a day would be enough, along with enough T4 to keep my FT4 levels in the upper third of range where I feel best.
Asyou say, same old! Can't think where their brains are at times! If everything was working as it should then you wouldn't have a problem! But I think unless you walk in our shoes you haven't a clue how it feels etc.
Very interesting to read a such asd detailed history of trying several different forms of thyroid replacement.
In a place like this, you will find that many people are self diagnosing and self medicating based on things we've learned on the internet (including journal articles and the odd hard copy books, too, of course), so we can't condemn doing so I definitely believe that its very important to be able to confidently read blood tests, and to do other testing like temperature, pulse, and monitor symptoms.
It sounds like you may have been overmedicated for some time as you have described a lot of overmedication symptoms. But it is a bit puzzling that you had been on such a wide range of doses, and makes me wonder if there is something a bit more complex going on.
You mention:
150 mcg of Euthyrox. TSH: 0.4 ( 0.2-.4.5), fT4 1.5 ( 0.8-1.8).
175- 200mcg Euthyrox. TSH: 0.05-0.2 (with some wild fluctuations.
4 gr NDT. My TSH was completely suppressed (<0.01), but my FTs remained in range. They varied, but were never out of range.
Last Summer: 25mcg T3 &1gr NDT. FTs were twice the upper normal limit.
If I've read this right and you were comfortable on 4 grains of NDT, with nice looking blood tests for years, it does seem strange that you had such hugely over range freeT3 in March. Unless you were on a lower dose in the past. Although 4 grain of NDT is the equivalently of about 300mcg of T4, so the NDT dose is much higher than your Euthyrox doses of the past.
You also mention fluctuating levels in the past. This does make me wonder if your Hashimotos has been dumping extra hormone into your blood stream and giving flares. This can make it very hard to find an optimal dose, because blood levels of hormone can be unstable all the time. Working to reduce antibodies can help with this a bit.
Did you ever manage to lose any weight in all your adventures? Based on anecdote in the forum and other places, some people are lucky and the weight just falls off once they find their optimal dose, and for others it doesn't budge
To start from the end: yes, I was able to lose weight rather effortlessly at one point - back in 2014. At the time, I had been on NDT for three years (I never lost weight on T4 only). During my annual visit to my hormone doctor (that's what the doctors trained by Hertoghe) are called in Belgium), I was told I had insulin resistance and that could make weight loss difficult and even impossible. I was offered Metformin but decided to try a natural alternative first - Berberine, 500 mg x 3. For some reason I honestly cannot remember, I added another supplement - Hyponidd - to be taken twice daily. I must have read some great reviews that made me order it.
Anyway, while on these two supplements, I lost 28 kilograms effortlessly (without dieting and exercising more than I used to) over the next few months, and ended up with a normal BMI for the first time in years (I have always gained weight easily and have been on and off diets since I was 14 which of course can also harm your metabolism).
Today, I know that Hyponidd is primarily intended to treat PCOS, and have been suspecting lately I have that (a forum member raised that possibility and that made a lot of sense to me). I have ovarian cysts for which I've been put on synthetic progesterone (Duphaston) prescribed by gynaecologist and I have gained a lot of weight while on it. It seems synthetic progesterone suppresses natural progesterone production and leads to estrogen dominance. During all this time, I have also been on estrogen (bio-identical, but still estrogen, prescribed by hormone doctor) which of course is bound to create problems if you're estrogen dominant.
Today, I curse myself for not finding out more about the various drugs I've been taking and how they interact. One problem of course is that I see different doctors for different things.
But PCOS will lead to weight gain and problems losing weight, so it makes sense I would lose weight on Hyponidd (which, actually, has great online reviews). I'm sure Berberine also contributed to the weight loss as it normalises blood sugar levels. But it doesn't work as well on its own (has not made me lose weight this time) which makes me wonder if the Berberine-Hyponidd combination did the trick.
I kept my new, lower weight until last summer, when my usual supplier of Hyponidd had run out of it and I had to order it from India. Delivery took forever and I had already gone on holiday when it arrived, meaning I did not take any for over a month. During that time, I put on ca 5 kilograms (but I also tend to eat more while on holiday - however, it's interesting to note that this was not a problem while on Hyponidd along with Berberine).
Having been put on Duphaston, I decided not to take Hyponidd as well in order not to interfere with the prescription drug.
You are absolutely right - I have tried many thyroid drugs and doses over the years. The doctor who treated me back when I was on T4 only wanted a slightly suppressed TSH in patients with Hashimoto's, to lower antibody activity, so suggested I take 200 mcg of Euthyrox daily. In any case, I would never feel well on the 100 mcg daily many doctors insist is a sufficient replacement dose, but it took 150 mcg to make me feel even remotely human. I was slow to respond to the effects of Euthyrox, and it took me months to notice any improvement when I was first put on it in 2001.
I felt very well on NDT for several years, and was convinced I had found the right dose for me (except the slight tweaking during the coldest and warmest months, but that would be +/- 1/2 grain or so, not more).
However, in recent months, it has felt like my body is rejecting the NDT or rather cannot cope with it. I have always taken it once daily and felt good that way, but maybe I should have tried multi dosing if my body cannot handle that much T3 in one go. Or I was simply overmedicated and should have tried lowering the dose until the hyper symptoms went away...well, it's not too late for that!
I read recently that some patients with Hashimoto's will have fluctuating hormone levels due to antibodies causing the thyroid to release hormones from time to time, and these patients should avoid NDT and take T4 only drugs instead, to avoid periods of drug-induced hyperthyroidism.
I was told by the hormone doctor seven years ago that, based on blood and the 24 h urine analyses, I was not converting T4 to T3 and my T3 levels were very low (both in blood and urine). That was the reason I was switched to NDT and, as I said, it worked well until recently.
I have read that some hypothyroid patients, mainly women, may need 6-9 grains of NDT daily if they are thyroid hormone resistant. At one point, I took 7 grains of Thyroid-S daily with no ill effects and FTs in the midrange (this coincides with the period during which I lost a lot of weight). But I had absolutely no hyper symptoms and labs were normal (except the TSH which has always been low on drugs containing T3).
I don't know if thyroid hormone resistance can go away on its own, but I know that there is no way I could ever take that much Thyroid-S today and feel normal. And I have no idea how common it is to have to literally lower your daily maintenance dose to half the amount of thyroid hormone you were taking before???
I have also been speculating lately that I am all of a sudden reacting to one of the fillers in Thyroid-S. It does have a lot of fillers (more than I'd like), but that has never been a problem before and it also has great online reviews.
I have been considering giving TR a try, since it contains much less fillers and also no lactose or gluten, but since it's been discontinued I prefer not to as I'd hate to do well on it and then not be able to source it anymore.
Thiroyd is another option. It does contain fewer fillers than Thyroid-S.
I am especially unhappy about the fact that Thyroid-S contains aluminium, but have no idea if we are talking about "the dangerous kind" of aluminium and in high enough amounts to be problematic (but, of course, this is a drug I have to take every day for the rest of my life so maybe even tiny amounts of aluminium will have a cumulative effect in the long run...).
I am all for self treating when doctors won't cooperate. I understand patients who order thyroid hormones online and start self treating if they have hypo symptoms but doctors won't treat until their TSH is above 10 (which I understand is the case in the UK?). I also understand and sympathise with patients who order NDT or T3 online when doctors will only prescribe T4 even if they continue to have symptoms. I've done that myself in the past.
What I meant was simply that sometimes, self diagnosing can lead to serious problems like it did in my case. I read this article in the blog of US osteopath Westin Childs where he said that rT3 dominance can cause many of the problems I've been experiencing lately (insulin resistance, carb cravings, weight gain or an inability to lose weight). The suggested treatment is to lower NDT and add T3. He describes the case of a woman having been on 6 grains of NDT while still gaining weight, and how he decreased it to 3 grains daily and added 25 mcg of T3. That sounded great to me, so I ordered some T3 online and added it to 3 grains of Thyroid-S. I realise now how foolish it was, but first of all: I cannot find a doctor to test and treat rT3. Not even the so called Hertoghe doctors do that. I checked out a couple of labs where you can order private tests but they had never heard of it. So I just decided, based on what I read in that blog and my own symptoms, that I suffered from rT3 dominance blocking the action of free T3 and keeping me hypo - hence the recent weight gain. I was sure I'd see great results once I had started treatment, just like the patient in the case study.
I know now it was pure folly to add 25 mcg of T3 in one go, but I think that when people are desperate to get well, they'll do anything to see quick results.
That is what I wanted to warn others about, not to tell everyone to stop ordering drugs online because I know from my own experience that is often necessary due to the ignorance of doctors.
I did great on NDT only for years, with no sign of rT3 dominance. All of a sudden, my body does not seem to like it anymore. I cannot explain it.
Another thing that has changed in the past year is going off prescription drug Medrol (4 mig daily) for adrenal fatigue. I had been on it since 2011 and worried about long-term effects even though I was taking the lowest maintenance dose (the equivalent of 20 mg of hydrocortisone). I decided to go off it after reading an article about adrenal fatigue not being a chronic but treatable condition, and that it should not be treated with prescription drugs but adaptogens. So I weaned off Medrol during the course of a few weeks, by going down to 2 mgs daily at first, and it went surprisingly painlessly given how long I'd been on it. I then started on an adrenal support product (containing rhodiola, holy basil, and ashwagandha along with vits B and C), but have not seen much result so far to be honest. I have considered going back on Medrol, but maybe that would be a bad idea now that I'm finally off it...? But my hormone doctor hands me a prescription for Medrol every year, so it seems she considers adrenal fatigue to require life-long treatment...
Cortisone is said to cause weight gain, but the 4 mg of Medrol I was taking daily for years never did that and I was able to lose weight while on it.
I'd appreciate input from others with similar experiences, be it PCOS or insulin resistance or adrenal fatigue.
Its interesting to hear so much of your story. It's really strange to suddenly not tolerate NDT. I don't think I've heard of it ever on the forums, although some people end up on T3-only because they realise any amount of T4, be it NDT or synthetic disagrees with them. That's the only thing that even reminds me of what you're saying.
I did meet someone in person who suddenly one day needed a much reduced dose, she actually ended up hospitalised for a few days while they worked it out. That does sound a bit more similar to your experience! But I don't know any more about it than that.
I probably have thyroid hormone resistance, and take the equivalent of 8 grains of NDT, tho I've swapped in some T3 recently, so now take 6.5gr and 35mcg T3. I'm still increasing because am still in bed much of the day. Although the most recognised form can be genetic, it seems that it can be caused by other imbalances in hormones, sugar metabolism, and possibly other things.
I think in your position I would scrutinise anything that could have changed in medication or lifestyle between the two phases. I suppose adrenal support is the kind of thing that could make a difference, as the two are very related. Although its possible you are in a better position now, if you only require a lower dose. Maybe something was blocking the hormone and that got taken away?
In your position I would change things very slowly and take a lot of measurements. That means getting regular thyroid panel blood tests regularly, taking temperature and pulse morning and night (or throughout the day). Noting symptoms and changes day by day. A step counter can be useful to notice changes over time. I'd probably try to slowly introduce T3. Almost no one does well on T4-only.
Thanks a lot for your input, that's very helpful to hear that my experiences seem unique...so I should probably not accept not tolerating NDT all of a sudden but continue to look for answers.
Since going off progestin and estrogen I seem to be losing quite a lot of fluid which is a good sign.
I have tried adrenal glandulars in the past but found them to be overstimulating, probably because of the adrenaline. I might give adrenal cortex a try before I consider going back on Medrol.
I agree with what you say about hardly anyone doing well on T4 only, at least in the long run. It makes sense to me to add some T3 to the mix to replicate how a healthy thyroid gland works.
There is so much conflicting info on NDT and how to use it correctly...from doctors like Dr. Blanchard who advocates very low doses of slow-release T3 (2.25-5 mcg daily) to doctors considering 3-5 grains of NDT (or the equivalent amount of T3) to be normal. I know a healthy human thyroid gland secretes mostly T4 and very little T3, but I think I've read that the hormones in NDT are bound by proteins so if I take a grain of NDT it does not mean that 38 mcg of T4 and 9 mcg of T3 will be released into my bloodstream...?
I think if you move slowly and take regular measurements you may be fine. The more cautious way to dose NDT is to go a quarter grain at a time. I actually still waited 6 weeks and did a blood test when I dosed that way. If you've got a freeT3 result at every dose, and know how to interpret them (which you can learn on the forum if you don't already know) its hard to go wrong.
I agree with what Humanbean says below, the biggest problem when you were switching things around was that you didn't have the freeT3 results to know where you were. You might have done well with a much lower dose of NDT.
On the forum the advice tends to be to dose by blood test. With NDT the traditional way is to dose based on symptoms and increase quite fast. Personally I think you don't have to obey the blood tests if you've got loads of symptom data to back you up, but it's good to have those tests as an approximation of where you are.
I dont think it's too helpful to think in terms of low or high dose. The important thing is to get the dose that's right for you.
Some of us will need a high dose for whatever reason. There was discussion the other day that very low stomach acid can reduce the amount of hormone getting through by something like 75%, and who knows how many other choke points like that there are on the journey to get that hormone into the cells where it needs to be!
I agree! And I don't think articles such as this one are particularly helpful in helping patients find the right dose as they seem to suggest that there is a "one size fits all" solution. I used to enjoy W. Child's articles, but the more of them I read the more I doubt he is correct on all accounts. I find he's often making rather sweeping statements without backing them up with solid scientific evidence. It sounds good when you read it the first time, but there is often very little substance in what he says.
As someone who also self-diagnoses and self-treats with all sorts of things I'm not going to blame you for what happened. I think your biggest problem was doing so without sufficient information. It was the lack of regular Free T3 results that made self-treatment go wrong for you.
There have been people posting on this forum who have been told by doctors that testing Free T3 is "not important". This always makes my jaw drop. T3 is the active hormone, so how they can say it isn't important with a straight face is beyond me. It's like saying that insulin isn't important.
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I definitely believe that its very important to be able to confidently read blood tests, and to do other testing like temperature, pulse, and monitor symptoms. 
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