I've been on T3 only for many years (62.5 mcg). I've switched from levo to T3 only in the time because I had an elevated rT3 and still hypo symptoms despite elevated dose.
Every endo I've seen in the last years said I should go back levo because my T3 levels are through the roof. They don't seem to understand that it's normal to have an elevated T3 level and non existant TSH.
I do have to clarify that T3 (Tiromel in my case) is not a registered drug in my country (Belgian), although it is in the Netherlands wich is about 10 kms from where I live.
Adrenals are shot and are getting worse.
My "windows" in which I can do something nice like a walk are getting sparser and shorter.
My current endo says my body really needs the T4 and he persuated me to add back in levo, 12.5 mcg 3 times/week. He told me my body would protest but didn't elaborate on the subject.
I should try this for 3 months and then have blood work done.
I have not felt this bad in many many years: I have increased muscle pain, I want to sleep all of the time, I'm exhausted, short of breath and very depressed.
2 things have improved: I sleep better and have less headaches.
But it really isn't a life like this. I ache all over and am seriously looking into euthanasia. I have no fight left.
I can't contact my endo and I still have almost a month to go. Will this get better? It has been getting worse steadily, exactly the same thing I experience when trying natural thyroid hormone.
My latest thyroid results in November last year were:
FT4 <1.3 (12-22 pmol/L)
FT3 5.76 (3.1-6.8 pmol/L)
TSH 0.01 (0.27-4.2 mU/L)
This was on 62.5 mcg of T3 only.
Thanks in advance!
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Soloslim
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I've switched from levo to T3 only in the time because I had an elevated rT3 and still hypo symptoms despite elevated dose.
I have to say, first off, that rT3 itself is totally irrelevant. It's inert and doesn't cause symptoms. Plus, there are many, many reason for high rT3 and only one of them has anything to do with thyroid, and that is when you're a poor converter with very high FT4.
Not that I've anything against T3 mono-therapy - I'm on it too - but you don't need to cut out levo completely to lower rT3, just lower the levo. And, in fact, you don't even need to lower the rT3 because it isn't an issue.
I am on T3 only because I cannot tolerate T4 in any form or any amount. This could be your case, too. In which case, it's silly your endo telling you 'your body needs T4' because it obviously doesn't. I've been only T3 only for well over 10 years - can't remember exactly how long - and have never felt the need for T4. Just for the sake of experiment, I have tried to reintroduce T4 several times, and it was always awful, so I'm not going to try anymore - ever. I certainly wouldn't allow an endo to bully me into doing so, I know my body, and he doesn't. It's very brave of you to persist with this attempt to include T4, but it it doesn't work, it doesn't work, and no-one should be allowed to make you feel bad about that. And there comes a time when you have to admit the experiment isn't working and give up on it. When you decide you've reached that point is up to you, but just give it up when the time comes.
How much has he put you on, by the way? And did you ask him why the body needs T4? A lot of us do very well without it. If he says something about only T4 can pass the blood/brain barrier, that's a lot of rot. Even after 10+ years I'm not a vegetable, so the brain is getting it's T3 from somewhere! My thyroid is dead, Hashi's, by the way, so it's not coming from there!
Oh! Just seen that you're taking 12.5 mcg 3 times/week. Not sure what your body is supposed to do with that. It's hardly worth bothering about. However, being such a very, very small dose, I doubt it's responsible for your present symptoms. How were you on T3 only? Did he reduce your T3 when he added the T4?
I didn't know that about rT3. Years ago, when there were still Yahoo-groups, I was told in one of them (adrenals and thyroid group or something) that I had to get rid of my rT3, because my the meds weren't going into the cell or something. And after I'd switched from levo to T3 I had no more rT3, so that kind of proved to me they were right. But after you've explained I now understand why no endo of the many I saw thought rT3 was important. I just thought they were ignorant about the issue, seems that I am the ignorant one. Thanks for clearing that up.
I was about the same as you, after some trials of re-introduction I said to myself: never again. Also on the late yahoo-group I was told that T3 only was very hard on the adrenals. And since my adrenals are in a poor state I assumed that being on T3 only wasn't ideal for my body.
There is a big difference between what my body needs and what it accepts. Body says NOOOO to almost everything even if I'm in dire need of it (all kinds of supplements and meds). I suspect that if it has to go through the liver, it won't work and it'll make me feel lousy. But that's just my ignorant self again assuming things.
One of the problems with my current experiment (or better: the dr's experiment) is that I have no clue of what to expect and when to expect it. Will it get better in time? Will my body get used to it? (if ever I had 1 euro for when that theory worked I would be filthy rich!).
I guess the dr wanted to try this because my health has been deteriorating increasingly over the past couple of years. IMHO a lot of my symptoms are rather adrenal than thyroid (+ a heap of unexplained ones) though. I don't want this the umptieth dr telling me he can't do anything for me...
He didn't reduce my T3. Because of the tiny dose of levo he said normally I would hardly feel it. Just to get used to it and see what it does. I am ridiculously sensitive on any level and react violently to what in other patients would be negligable.
I was told in one of them (adrenals and thyroid group or something) that I had to get rid of my rT3, because my the meds weren't going into the cell or something.
It used to be thought that rT3 blocked T3 receptors so that T3 couldn't get into the cells. We now know that it doesn't do that, it has its own receptors.
It's prefectly normal to have some rT3 in your system at all times because some T4 is converted to rT3 on a daily basis - about 30% of your T4 will always be converted to rT3. But, when the FT4 is too high, it will be a much higher number, and you will also make less T3 than usual. jimh111 said: it can impair local deiodinase (D2). But I don't think it's the rT3 itself doing that, because it is inert and doesn't do anything. It's the effect of the FT4 being too high that does it. And what it does is convert T3 to an inactive form - I think (I'm honestly not very clear on that point).
Of course, if you're not taking any T4, you won't have any rT3, but that won't make you feel better in itself. And, as soon as you start taking T4 again, you will have rT3 again, but the quantity depends on how much T4 you're taking.
Do you know if you're a poor converter? Was your FT4 very high? I didn't have a conversion problem, but I still couldn't tolerate T4.
Also on the late yahoo-group I was told that T3 only was very hard on the adrenals.
I don't think that's true. I've never heard that before.
Will it get better in time? Will my body get used to it?
That wasn't my experience, no. It didn't get better and my body didn't get used to it. I just wanted it gone!
I guess the dr wanted to try this because my health has been deteriorating increasingly over the past couple of years. IMHO a lot of my symptoms are rather adrenal than thyroid
Could be that your T3 just isn't high enough. I take 75 mcg (at the moment, I do sometimes feel the need to lower my dose, but not for long). But, you really ought to know what your FT3 level is.
Have you never had your cortisol tested to see what your adrenals are doing?
Could be that your T3 just isn't high enough. I take 75 mcg (at the moment, I do sometimes feel the need to lower my dose, but not for long). But, you really ought to know what your FT3 level is.
I really don't know. I do have hyper symptoms like trembling and feeling wired up. I've tried lowering by 1/4 tablet (endo asked me to) but then I felt sluggish after a day or 2. So definitely lower is not the way to go. Hmmmm, it has been a long time since I considered upping my dose. Something to consider...
I've posted my FT3 level in my original post, it was FT3 5.76 (3.1-6.8 pmol/L).
Have you never had your cortisol tested to see what your adrenals are doing?
Yes, as I wrote in my profile I had 2 rather recent ACTH-tests. Failed one and barely passed the 2nd one. Endo says clearly adrenal insufficiency. Had an ITT more than 10 yrs ago and failed that as well. Was put on HC after that. 2 years of hell and weaned myself off it.
The problem is, doctors don't seem to understand why they're doing the ACTH test. It's not a pass or fail type of test, it's to find out why you have low cortisol - I presume they tested the cortisol first and found it low? Did they test DHEA? Did they test ACTH itself?
So, there are two possible causes for low cortisol:
- either your adrenals are at fault and incapable of producing enough cortisol
- or they are fine but not getting the stimulus they need from ACTH (like thyroid and TSH) in which case, it's the pituitary at fault.
But, when the adrenals react to the ACTH stimulus, the tell you you've passed the test and leave it at that! Which is not very helpful.
Why didn't you get on with HC? I found it wonderful stuff!
I've posted my FT3 level in my original post, it was FT3 5.76 (3.1-6.8 pmol/L).
71.89% through the range. Well, it could be higher. Some people just need their FT3 over-range to feel well. Remember, at best, ranges are only rough guides, they can't tell you what you need as an individual. If you need to go over the top you need to go over the top. You won't drop dead on the spot! And if that is too high, you'll feel it and reduce your dose, no harm done. Worth a try.
I presume they tested the cortisol first and found it low? Did they test DHEA? Did they test ACTH itself?
Morning cortisol is sometimes lowish but sometimes OK. As I wrote before an ITT was performed over 10 yrs ago and those results were not great. But it wasn't done fasting so the results might have been incorrect. I was put on steroids after that test and the endos I saw after that said that I should never have been put on them. That I didn't have adrenal insuffiency but might well have developed it from the steroids.
Over the years I've done a couple of saliva tests and the curve was never OK, esp. low in the PM.
Why didn't you get on with HC?
I had more physical energy but I felt like zombie all of the time. It was misery. Couldn't find a dose that worked. Tried HC orally at first but since I have chronic esophagus inflammation it made me throw up blood after a while. Not great. And I'm unable to tolerate PPI's and other acid meds. So I tried using the HC capsules rectally which wasn't a great success either. Ended up with a bleeding and very painful anus. So I was then put on pred, still felt like the walking dead. In the meantime a bit of Florinef was thrown in because I had swollen ankles/legs, but needless to say I didn't do well on that either. So after about 2 yrs I weaned myself off the steroids (using Paul Robinsons T3CM), something my drs said I would never be able to do and voila.
My current endo says my condition isn't very comfortable or pleasant but as long as it doesn't get worse it should be managable. He said I could give supplements like L-tyrosine a try and I did do that but as soon as I started taking that, I felt dizzy, ears were ringing, so I didn't continue.
Did they test DHEA?
Yes but not on that occasion. In the past, during my 10 years of "treatment" for ME/CFS I was put on DHEA for long periods because of low levels. Like 25mg or 12.5 mg. Wasn't doing great on that. Then I tried sublingual DHEA 5 mg and I could tolerate that just fine but it can only be ordered abroad and is considered a prescribed drug in Belgium. Customs intercepted my order twice and I can't take the risk anymore. I did another trial with regular capsules but it didn't work.
I do need a lot of meds and supplements but my body just won't accept them. My mum is just the same.
71.89% through the range. Well, it could be higher. Some people just need their FT3 over-range to feel well. Remember, at best, ranges are only rough guides, they can't tell you what you need as an individual. If you need to go over the top you need to go over the top. You won't drop dead on the spot! And if that is too high, you'll feel it and reduce your dose, no harm done. Worth a try.
It certainly is. I'm probably going to stop with the levo and then after a couple of weeks when I feel my "normal" miserable self again I could try adding in 1/4 of Tiromel and see how that goes. I really never considered it. Well, and if I drop dead on the spot I won't hold it against you LOL
GG I wish you can put the RT4 to rest. Many thyroid forums are frightening thyroid patients that RT3 is not healthy and that it has negative effects on us. Please clarify and put it to rest that RT3 is not what they make it out to be.Thank you so much in advance.
greygoose has done that over and over again in countless posts. I admire her patience. But, as long as various forums keep saying that rT3 is the real reason thyroid patients fail to get well, there really isn`t much GG can do about it.
Not quite sure what you want me to do! There's a strong body of thyroid patients and doctors that firmly believe that rT3 is the villan of the piece. I say over and over again on here that it isn't. I'm not going on to all the forums to tell them that they're wrong - I'd probably get lynched! I'll just keep spreading the word here and hope it spreads to other forums.
Well, I've never seen a doctor that knows what rT3 is - I live in France - but the type of doctor that writes blogs and pontificates on why some patients can't feel better even when 'optimally' treated (!) tend to blame it all on rt3. Westing Childs, for example. They're usually American, I think. UK doctors certainly have no idea what rT3 is. But, thyroid patients read these things on internet, and being desperate, they clutch at straws.
I see. I know what you mean being one of those desperate patients myself.
It would help if some drs explained things to patients instead of just saying: it's better or you body needs this or in time your body will adapt to this. They just don't bother.
But doctors can't explain anything to patients because they know next to nothing about any of it. They have very, very little understanding of thyroid or hypothyroidism. It's not that they don't bother, they just don't know. And they try to disguise their lack of knowledge with bombast, or by freezing you out. There are very few doctors that would ever admit they just don't know.
Yes, I was one of those desperate patients, too. I spent a small fortune on quack alternative doctors that purported to be able to help but just made things worse! You would not believe some of the crazy 'treatments' I've under-gone. And, yes, I too went through an rT3-is-the-enemy phase, until I proved to myself that it just didn't work like that. We live and we learn - hopefully.
It seems rather logical to me that these functional drs tend towards NDT because it mimicks the human hormone the best, doesn't it? If I understand correctly that is.
Self-treating is what I've been doing for many many years. No problem getting T3 and yes, my GP will even prescribe it to get over the border if I ask. But it's cheaper getting some from abroad.
It's just because my health has been deteriorating badly and increasingly that I desperately want to find someone who can help me, even it's only a little bit. But this endo has already said that I would be better of in a "university hospital" though he failed to answer when I asked him which one and what kind of specialist. Sigh.
I've always said: I will take T3 only as far as it will take me. Maybe I'm getting at the end of my journey. Not a nice prospect, I'm only 63.
It seems rather logical to me that these functional drs tend towards NDT because it mimicks the human hormone the best, doesn't it? If I understand correctly that is.
Well, I wouldn't use the word 'mimic'. It's pig thyroid and pigs are the closest animals theraputically to humans. But, even so, it's not the same ratio of T4 to T3, and it doesn't suit everybody - far from it! It was probably STTM that gave NDT it's present 'reputation' of being a super 'drug', and nothing else will do. And it does make some people much, much better. But not me. It made me ill because there was too much T4 and not enough T3. And, a lot of the endos in Belgium are Hertoghe doctors. Theirry Hertoghe, I believe, thinks NDT is the only way to go. But, there are doctors that will prescribe T3.
I really think it's time to try increasing your dose.
I have no experience with T3 only, I’m just a typical t4/t3 convo at the very start of my journey.
But my question is… you say this: my T3 levels are through the roof… But you are just 72% through range.
I know T3 mono doses more on symptoms than when on T4… so wondering if you ever considered just needing a bit more T3? 72% is high but I could see a little room (unless that’s not how T3 mono works…)
Also, how is your iron/ferritin/transferrin saturation, etc? Can you share whatever results you have from your latest full iron panel or any things you have tested?
Without enough iron, T3 (combo or mono) won’t work optimally.
One of the endos I saw last years said that, but then she had lab work done at noon, so obviously my T3 was sky high because I'd taken it that morning. Duh!
More T3? Hmmmm, I'm already trembling as it is now and my head has a tremor. I'm also getting thinner and thinner. But as I've said I'm also an untreated adrenal patient so often it's hard to know which symptom goes with wat.
My latest lab results, yes of course. I'll attach them. They're in dutch though but I guess they are comprehensible. If not just give a shout.
Well it seems I'm not able to attach PDF-documents here. How do I upload test results?
But as I've said I'm also an untreated adrenal patient
I strongly suggest you investigate your adrenal situation further
I take thyroid glandulars and I absolutely cannot tolerate an increase without first increasing my adrenal support. Like you I get tremors but also anxiety and sweating (unfortunately I’m not getting thinner and thinner 😟) when I raise my dose. Adrenal health is much overlooked and there are many struggling with thyroid replacement because they’re unaware of the significance of adrenal health or unaware that theirs aren’t coping
That is very good advice but unfortunately nothing can be done about my adrenals. Unable to tolerate any steroids or even natural supplements. I just have to go on and hope for the best. The getting thinner is due to my adrenal situation I presume. I don't sweat excessively though, only when I strain myself.
Not even adrenal glandulars like Adrenavive? It’s an unadulterated freeze-dried bovine gland. I couldn’t manage the whole gland (medulla and cortex), it was too much, so I swapped to adrenal cortex-only which is gentler. I started by using just a tiny sprinkle and increased it over several weeks until I could manage a whole capsule. I’m somehow feel more resilient and robust when I’m on it
It’s a delicate balancing act and I hope you can find a solution because contemplating euthanasia is a serious situation to find yourself in. Do you have someone to talk with ?
I have tried Thorne Adrenal Cortex, one of the functons drs prescribed that at the time. 1 started with 1 caps and then got side effects like buzzing ears, dizzyness, flu like symptoms, sinus infection flaring up, feeling like a zombie... So he upped the dose to 2 caps. Needless to say things just got worse and I had to stop altogether.
I could try and order another brand with tablets instead of capsules and try what you did. See if I'm able to tolerate that. Good advice, thanks!
I do have someone to talk to, thank you very much. So kind of you to ask.
Gaviscon is a type of medicine called a reflux suppressant. Reflux is when stomach acid travels up your food pipe and gives you a burning feeling in your chest. Reflux suppressants like Gaviscon contain alginic acid which is made from seaweed.
I don't have low stomach acid, that has been tested. My esophagus is chronically inflamed and a lot of foods (spicy ones!) and drinks (fizzy drinks, alcohol, coffee) cause immediate pain. I also have difficulty swallowing foods and pills, they get "stuck". As I've told I had an eating disorder in the distant past and I made myself vomit often. I think this has damaged things, hence the problems today.
rT3 does not bind to thyroid hormone receptors but it can impair local deiodinase (D2), see ibshypo.com/index.php/rever... .It's strange some people can't tolerate levothyroxine even at small doses. After all everyone makes T4 in their thyroid until it packs in, is TSH suppressed or removed. It's possible some people react to various fillers in the tablets but there are still some patients who can't even tolerate liquid levothyroxine. And they probably get similar fillers in their liothyronine tablets.
We need blinded studies. I wonder if this group of patients develop an intolerance of the T4 molecule or perhaps more likely T4 action on some other receptors cause problems, or they have a disorder whereby T4 is excessively converted to rT3.
I have this theory that intolerance of T4 is due to being left undiagnosed/untreated for an excessively long time. For me it was nearly 50 years. And I think that it was much the same for DippyDame . Perhaps the body forgets how to use it. Because we know that when the thyroid is failing, it very often makes more T3 than it does T4. But I don't know how true that might be.
Sounds reasonable. I was left undiagnosed for 10 years even though I went to the doctors time after time with increasingly deteriorating health and when I finally did get levothyroxine in ever increasing doses it never made me feel any better. Eventually, after 7 years of struggling, my endo finally gave me some Liothyronine to try and I got my life back. Initially on a T4/T3 combo with T4 being the dominant dose, I was allowed to adjust my doses under his supervision (until he retired) until I got to my present T3 dominant dose of 50mcg/day with just 25mcg T4/day, where I feel well. However, the damage that was done to my health during those 10 years before diagnosis and then the 7 unsuccessful years on T4 monotherapy has never been reversed and I resent that enormously! Doctors made me ill and did great harm!
Yes, I'm now convinced I was born with a thyroid problem ( no new born heel prick tests in 1945!)
Looking back ( partly anecdotally) I've had health issues and symptoms of a thyroid issue since I was a small child....long saga!
I also think, based of family knowledge, that this is inherited from both parents and both grandmothers.....but too late to prove this definitively
In my case I suspect low cellular T3 has been the issue, the result of some form of RTH......geneticist once told me it could be as yet unrevealed genetic variants! But that doesn't really help!!
I'm convinced that some of today's issues were established at cellular level a long time ago (and we know cellular memory exists) and as diogenes once told me some of that damage is unlikely to be resolved.
My journey has been long and at times challenging, but the only thing that has helped has been supraphysiological doses of T3.....T4 had to go!
It freaks medics out but I reckon after 7/8 years "study" I now know a lot more than they do....and I'm living proof!!
The medical profession were clueless! I found the experts here including you greygoose . Thank you all
I also think, based of family knowledge, that this is inherited from both parents and both grandmothers
Oh yes! Me too. But we'll never know for certain because we were a family that only saw a doctor if you were dying! Unfortunatley, they didn't apply that rule to me and were always rushing me off to see the doctor for one chest infection or another (dreadful experience! sitting in a damp, under-ground waiting room, surrounded by many coughing and wheezing sick people, to see a doctor that was wheezing and unable to breath himself! And all he ever did was prescribe the same ghastly medicine that never did any good, and evenutally sent me to have my tonsils out, which I'm sure didn't help!)
Well, that was my rant. lol I'm not sure I was born with a thyroid problem, but certain it developed during my early childhood. And no doctor was every clued up enough to test my thyroid until I was 55.
I was around 35 when I was diagnosed with subclinical hypothyroidism (along with a long list of other diagnoses that in hindsight were very wrong but whatever).
As a child I was dragged to all sort of doctors, regular ones and homeopatic ones, because I was overweight and sluggish and depressed (even as a young child).
I've been "treated" in psychiatric wards but no dr or therapist ever diagnosed me with thyroid problems or ASS. If only, how different my life would have been. But no use crying over spilled milk.
I now am convinced of the fact that many psychiatric patients with problems such as eating disorders, depression, self-harm, etc. could be helped if only their thyroid levels and B12 levels were checked. I know I became a totally different person once these things were treated, I became a human being again.
Since I feel I'm slip-sliding back into a darkness I'd long forgotton I think I'll stop the levo. The hell with it. I'm going to see my GP tomorrow just to have something on the record.
Ah! They took my tonsils out too, think I was 4....all I remember is the ice cream, a rare treat!!I also had dreadful earache....I was the small child with warm almond oil soaked cotton wool stuffed in their ears....and a woollen pixie hood to keep them warm. Argh!!
I read somewhere (probably lost the link, my filing is chaotic!) that childhood ear problems are an early sign of RTH.....but we can't believe everything we read!
Lots of dots that were missed, or that nobody ever bothered to join up!
I vaguely remember the ice cream, didn't like it much. I've never been very keen on ice cream, and it was awful in those day! lol
What I remember is a large room with with many, many beds, so close you could hardly pass between them, full of crying children. And being dressed all in green plastic - in case I was sick - and having what I thought was a hot-water bottle neck thingy placed over my face. And when I woke up and wanted my mummy, I was told that I wasn't allowed to see anyone - no visitors! (When my youngest had his adenoids out, I was with him the whole time!) I don't know how long I stayed there, but it seemed like an eternity!
I think this was the case with me also. I was a chubby and tired (lazy!) child. Mother was overweight, grandmother also. My mum has a lot of unexplained serious health issues as well and is very intolerant to most meds/supplements as well.
My guess is that hypothyroidism along with a very stressful childhood (ASS, abusive mother) and my coping mechanisms have caused so much stress on my system that I've developed adrenal issues. Just a theory and a useless one at that because it didn't solve anything!
Another update: general pain is much better, I feel like a human being again (well, more or less), shortness of breath is almost gone, I'm not feeling like a zombie anymore. That is 1 week after stopping the levo.
My GP and I agreed that I would stop for 2-3 weeks and then start the levo again but then at3 x 1/4 tablet of 25 mcg instead of 1/2. Still, I'm not very keen on going down that road again. It really was hell.
On the other hand: since my brain started working a bit again I've been reading posts here and I've read many times that levo takes 6-8 weeks to "settle". So I'm now very frustrated, worried that I've stopped it too soon. I wasn't able to browse when I needed it, just went what I read in the replies to my topic here. I've really got my knickers in a twist over this!
Don't know what I should do now. I'm seeing my endo in about a month and I'm pretty sure he won't have me as a patient anymore after stopping the levo. But then again, he said I could always call him but the receptionist said they are not allowed to transfer patient calls in any case. So!
I'm not feeling like a zombie anymore. That is 1 week after stopping the levo.
The way you feel after one week doesn't mean anything. It's perfectly usual to feel great when first stopping levo, but it doesn't always last.
That said, you do know that levo doesn't agree with you, so why are you agreeing to add it back in again? No GP, endo, not even the king of England would get me to start levo again! What's the point? Your body is perfectly capable of getting on just fine without it. It doesn't make any sense. And if the endo is blackmailing you to go back on it, tell him to take a running jump at himself. It's not his body or his health or his life. The patient is the expert on her own body and knows what she needs and what she doesn't. It doesn't make any sense to put his little foibles before your certain knowledge of how your body works.
I did agree, but I'm getting cold feet already. 😉 I was thinking that, if this low dose is "toxic" for me, will an lower dose be less toxic or just more slowly?
Reasons for considering to go back on levo:
I'm pretty sure my endo will tell me that he can't "treat" me anymore (he's not exactly treating me right now as he's now prescribing any meds I can take). And taking into account the state of my adrenals I really would feel al lot safer with an endo back-up, shoul anything happen (e.g. adrenal crisis).
Furthermore, T3 isn't a registered drug here in Belgium. So, what if I'm hospitalised? If it would be for surgery, I could still take the T3 with me to take but what if I have an accident or a crisis? They simply don't have the medication here! That really scares me.
Also, every endo I've seen has told me I really NEED levo and it scares me that I'm not taking in. I keep thinking that I'm causing my body more harm in not taking it. But then again, it can't be normal to feel as badly as I did, can it?
I was thinking that, if this low dose is "toxic" for me, will an lower dose be less toxic or just more slowly?
If you're like me, any dose is 'toxic', no matter how small.
taking into account the state of my adrenals I really would feel al lot safer with an endo back-up, shoul anything happen (e.g. adrenal crisis).
And do you really think he knows any more about adrenals than he does about thyroid? Why can't you just get another endo, anyway?
what if I have an accident or a crisis? They simply don't have the medication here! That really scares me.
How are you getting your T3 now? Is the endo prescribing it? Or are you buying your own on-line? If buying your own, what you need to do is what I do: have someone - friend or family - that knows what you need and where to get it in case of emergencies. You'll be ok without it for a while until the person can swing into action to get you more. I survived six months without after hospitalisation. I put on a bit of weight, but that was all.
Also, every endo I've seen has told me I really NEED levo and it scares me that I'm not taking in. I keep thinking that I'm causing my body more harm in not taking it.
But you must have realised by now that endos really don't know that much about thyroid. They may think you NEED it, but are they right. Quite a few of us on here take T3 only and we're just fine. I've been T3 only for well over ten years. And I don't know what harm it could do your body to not take it.
And do you really think he knows any more about adrenals than he does about thyroid? Why can't you just get another endo, anyway?
Oh, I've had plenty! I was happy to finally have found someone who is friendly and acknowledge the use of T3. The others didn't have a clue and/or were kind of bullying.
The latest one, someone who came highly recommended, did blood work around noon (!) and then said my FT3 was rocket high and I should come off the meds and see "if I really needed it". Sigh. Of course it was high, I'd taken my morning dose!
How are you getting your T3 now? Is the endo prescribing it? Or are you buying your own on-line?
I have couple of good samaritans who bring back Tiromel for me from Turkey, bless them!
I survived six months without after hospitalisation. I put on a bit of weight, but that was all.
Wow, you must have felt so awful! I feel dreadful after missing just the 1 dose!
They may think you NEED it, but are they right. Quite a few of us on here take T3 only and we're just fine. I've been T3 only for well over ten years. And I don't know what harm it could do your body to not take it.
Well I guess they just apply what they learned... I'm not medically schooled at all and my one remaining brain cell isn't able to even fathom the beginnings of medicine, but I think by myself: they did, what, 8+ years of uni, they must know SOMETHING?
Some dr once told me that normally T4 is converted to T1, T2, T3, etc. (or something like that). By taking T3 only, you miss out on the other needed stuff. That is why the functional drs recommed NDT, because it has everyting in it.
Wow, you must have felt so awful! I feel dreadful after missing just the 1 dose!
Not at all. I felt great! Compared to how I felt before I went into hospital (nothing to do with thyroid) I was on top of the world. Which is why I thought I'd been misdiagnosed and didn't actually need thyroid hormone replacement. I'm not saying everyone would feel the same under the same circumstances, but my point is, I survived. I couldn't have gone on much longer without it, obviously, but I did survive those six months. You don't just drop dead after a certain time without it - whatever that period of time might be for you as an individual - you have time to organise yourself. And, if you did go into a myxodema coma, I'm pretty sure the hospital would have supplies of T3 to give you intravenously. Because that's what hospitals do.
So, you have two good friends that know your needs, and provide your T3. So, surely they could be relied upon to continue doing that in an emergency where you're hospitalised, no? So, if your very ignorant endo - although probably a very nice man - isn't even prescribing your T3, what do you need him for? He sounds like he could possibly make you worse, rather than better.
Well I guess they just apply what they learned...
Yes, of course. But that still doesn't make them right, because they have never questioned what they've learnt. And if you never question anything you cannot be sure that it's right.
I think by myself: they did, what, 8+ years of uni, they must know SOMETHING?
Of course they know some things, but just not about thyroid. Because thyroid is very low on the medical list of priorities. I don't know how true it is but I've heard that out of those 8 years, they only spend about 1 afternoon on the whole of the endocrine system - which is vast! So, you can imagine how little time is spent on the actual thyroid.
Also, you have to consider how long ago he was in uni, because science marches on relentlessly, and a lot of what he learnt all those years ago has been up-dated, proved wrong, or irrelevant. But doctors do not tend to keep up with the latest findings. This bit about the body needing T4, probably is what he learnt in med school, but has since been proved wrong.
Some dr once told me that normally T4 is converted to T1, T2, T3, etc.
Yes, but not in that order. As Tatty explains below, 'conversion' is done by removing one atom of iodine from one molecule of thyroid hormone. T4 has 4 atoms. One is removed and it becomes T3. Another atom is removed and it becomes T2, etc. So, all you miss out on is the T4 itself. And as that is basically a storage hormone that doesn't do much until it is converted to T3, do you really need the T4? Many of us have proved that we don't.
That is why the functional drs recommed NDT, because it has everyting in it.
But, then again, are they right? Does it have everything in it?
The thyroid gland makes mainly T4, and a little T3. If it does make any T2 and T1 the amounts would be infinitesimal. It doesn't need to make it because so much comes from conversion.
So, the question is: would that tiny amount survive the process of being made into a pill? And if it did, how much of it would there be? Such a tiny amount that you can't measure it. You will note that they specify the amount of T4 and T3 in one grain of NDT, but no mention of T2 or T1, so is it really there? Or, does your body just do like everyone else's and get it from conversion?
Also ask yourself: do you really need T2 and T1? Or are they just steps in the recycling of iodine in the body? Nobody is very sure about what they actually do. All sorts of theories but no hard facts.
So, you have two good friends that know your needs, and provide your T3
Actually, no. I hardly know them, I just know they go to Turkey every few months and I asked. They don't live nearby at all.
So, surely they could be relied upon to continue doing that in an emergency where you're hospitalised, no?
No, but if I'm prepared I could maybe ask a neighbour or so. I'll have to tackle that problem when/if it occurs.
Thank you so very much for taking the time and making the effort to explain things to me. I really appreciate it.
Can I ask you: how are you doing generally? Are you "normal" and can you do activities/work, etc? Have a social live? Myself I haven't been able to work since 1994 and my condition is quite poor. On a good day, I can walk for about 1 hour OR do some housework. I have days that I'm so groggy and dizzy I can't watch TV or read or anything. I can never ever plan anything: I can go to sleep "fine" and wake up like a dead corpse in the morning. No social life left at all. Not to rant, but just explaining why I took the plunge to try levo, to see if things could improve somewhat.
I'm 79, now. I worked until I was 65. Thank god I don't have to go to work anymore! Because I wouldn't be able to do it.
BUT one has to take into account my special circumstances:
- I have been hypo since I was about 8 years old, and not diagnosed/treated until I was 55. Some permanent damage was done - especially to my lungs, I think.
- Between then and now, I have had a lot of health problems that have nothing to do with thyroid - yes, I'm serious about that, things like flu and covid. And, most importantly, an episode brought on by spider bits on my legs, which became infected. Two weeks in hosiptal, I nearly died of sepsis. I haven't been quite 'normal' since then. My legs and feet suffered greatly and I have a lot of difficulty walking, now. I certainly couldn't walk for one hour!
- each of these episodes erodes my health a little more. I haven't been right since I had covid in October 2022 - long covid? I don't know. And then I had flu starting December 26th 2023 and I still haven't quite got over that.
So, I'm not a typical case. I do have a social life, but not very often - can't stand the pace! I've done quite a bit of entertaining in the past year, but it takes its toll. But I am adamant that that has nothing to do with my thyroid, it's all the rest that is slowly grinding me down. And, at my age... So, all in all, I think you'd be better asking someone else that question, if you really want to know how hypo affects people's lives.
As to that endo and her report, all I can say is: typical! They are terrified of T3. They don't know what it is, nor what it does. In fact, they're terrified of all hormones - that said, I don't think they've latched onto the fact that TSH is a hormone, yet! 🤣 When they do, they might not be so keen on relying on it. But T3 especially worries them, I don't know why. And they are full of terrible warnings about what it will do to you, and seem to be oblivious to the fact that their own thyroids/bodies make quite a lot of T3 every day, and it's coursing through their veins on permanent basis!
That said, obviously you don't want to take too much. Too much of anything is bad, whether it be T3 or chocolate mousse! But, when taking a high dose of T3 it really doesn't matter what time you have your blood draw, because your TSH is going to be suppressed, anyway.
An endo I saw once (the one who had bloodwork done at noon!) wrote in her report:
"Conclusion Iatrogenic intoxication with T3 (liothyronine). It is not entirely clear to me whether the patient actually needs thyroid hormone replacement. To do this, she would first have to stop her current high doses of T3. In this way she risks causing cardiac arrhythmias and osteoporosis or an increase in osteoporosis."
A lot if what you've said there resonates with me too. Can't tolerate t4 either tablet it liquid, likely thyroid issues as child, rapid weight gain in a year, cold and toilet issues but when your a kid you know no different. Before diagnosed my T3 was top of range with t4 bottom yet I was so ill.
Your thyroid was making more T3 than T4 because it was failing. That's what it often does, to keep you alive.
Nobody tested my thyroid when I was a child, even though I had so many obvious symptoms - well, they're obvious now I know about these things, but obviously not to doctors for the first 55 years of my life! Maybe that is why we can't tolerate T4, who knows.
Yes only a few months ago did the penny drop for me that likely thyroid issues from childhood. I wonder back then when I suddenly put weight on in a year being roughly 8/9 years old if any tests were ever performed.
My parents did take my to the doctors which I only remember for being put on a diet. I don't remember ever over eating as food wasn't in abundance back then like it is today. I just remember going getting weighed a lot and no longer allowed a jelly baby from the jar on his desk. That's the only thing I remember.
Sadly my parents are no longer with me to ask about it 😢
Oh, that sounds exactly like me! Started putting on weight around 8 years old, for no visible reason. I didn't even eat much because not only was food scarce in those days, it was also pretty awful! We lived mainly on potatoes and I hated potatoes! And my brother used to scoff down everything he could lay his hands on - even off other people's plates! - and he was skinny as a rake! But no-one questioned it. Weird.
My parents didn't take me to the doctor's for my weight-gain, but I was always there because of chest infections. My weight was never mentioned. I think it's terrible putting children on diets!
I can't really remember much but I'm so glad they did. I managed to lose some weight before going high school, I would have been bullied terribly otherwise. Weight has been a massive issue for me since then and always had to virtually eat nothing just to maintain. Only this last 17 months has things started to change and very slowly losing, 1lb a month which is unbelievable for me, never happened in 20 years so I'm finally achieving Weight loss.
Same here, I just was overweight and lazy and depressed as a child.
But even if they'd tested: a lot of times it depends on the interpretation of the test. A lot of drs say you are OK if you are within range, even if it's only a tiny bit and for some us that can be too little.
I did tolerate T4 for a couple of years but I had to increase the dose steadily. Once I'd stopped the levo and tried T3 only, there was no going back.
I can relate how you feel. I too was very ill. I was on levo (synthroid) but was not converting it. I was lucky to find a functional Dr who allowed me to try T3 only. He also prescribed bio-identical hormones. After 6 months on T3 I too was becoming very weak and so tired but I couldn't sleep properly. Even before I went on T3 I couldn't sleep as my oxygen sats and heart rate would drop at night and it's as if my body kept me awake to keep the heart rate and sats elevate.I finally added back T4 (NDT) and felt more energy but still very ill. It took me about another 5 years to adjust the dose to what I feel is optimal. I'm now only on NDT and I am converting very well. When my free T3 gets to high I feel anxiety and depression.
I recently discovered I have reactive hypoglycemia. I'm not sure what came first, my thyroid issues or blood sugar.
When I would have my labs done I always showed a normal blood glucose and HA1C.
I have worn a glucose continous monitor and have learned what triggers my glucose drops. When it drops I feel very shaky, my heart races, I get very tired and my brain pulses.
I think everything in our body is so interconnected. I agree that you need to work on the adrenals but maybe consider blood sugar.
My oxygen sats are fine and I almost never have a low heart rate. My pulse is around 70-80 most of the time. Sometimes in the morning my BP drops and my pulse goes up to 120 but not every day. I just feel myself draining at that moment, I guess it's an adrenal thing.
Contrarely to you I didn't feel more energy when adding in NDT at all. I just had the impression that I went into shut down. The more the dr added the worse I became. She didn't understand, said it was very illogical. Finally when going back on T3 only it was as if the light was switched on!
I don't thing my FT3 is too high. I'm not anxious, just very apathic, lethargic and depressed. Yesterday I really felt the urge to hurt myself, something that scares the living daylights out of me. I have a history of self harm from back in the days when I was undiagnosed and untreated and I don't want to go back that road ever again.
The glucose is something to consider although I don't really believe that this is the case with me. When I was on steroids I was going on glucose intolerance and I changed my diet drastically, eliminating most carbs. Since I'm off the steroids I still eat fairly low carbs and almost no added sugar. I stopped monitoring my glucose after it had been fine for a long time.
I do need professional help but none of the professionals so far has been able to help me. And rest assured: the urge to self harm is gone, it was there and then it was gone. But to me it is proof that when I did in the past it was because something with my hormones was wrong not because I'm a basket case. (not saying I'm not one ) And it is this feeling along with the wonderful reactions here that have helped me decide to stop the levo. I won't feel great after that but at least I'll have some sorry excuse of a life back.
I'm well aware that not all of my symptoms are thyroid-related. I have so many deficiencies. One of the functional drs I saw said she never saw someone with as many at the time. I think there is something very fundamentally wrong and I can only try with tiny tiny amounts of supplements or meds and hope something will do something right and not make me sicker.
I think it's wonderful that fellow patients really take the time to help other patients over here, it is heart warming and it makes me feel less alone. Certainly the stories of other patients who are unable to tolerate levo as well, it left me feeling I'm not the only one.
well, not exactly. I wasn't yet on levo back then.
have you ever been diagnosed with overt hypothyroidism
No I was never diagnosed with overt hypothyroidism. A couple of drs over the years suggested that stop ALL thyroid meds and then test again after some time. Although in theory that sounds quite logical I wasn't very enthusiastic towards that suggestion because
a) lowering even a bit of T3 makes me feel lousy so I really don't want to go back to full hypo again
b) when I wasn't on meds yet no dr in 35 yrs even considered hypothyroidism despite the fact that was overweight but not eating, tired all the time, depressed, etc.
Getting on thyroid meds saved my life back then. Quite literally.
what is your diagnosis (autoimmune thyroiditis aka Hashimotos etc)
1 endo said I had Hashimoto's but that has never been confirmed. I don't recall ever having antibodies but I don't have my early results. I do have other autoimmune issues (LS, allergies).
Which came first, your adrenal insufficiency or your hypothyroid diagnosis?
I had my thyroid diagnosis before my adrenals were even mentioned but that's because I never saw an endo before. It was in specialist in internal medicine who "treated" me for ME/CFS who made the diagnosis. But I guess my adrenals were alread shot at the time.
A year before I lost my job, my boyfriend at the time and I had my 3th back surgery of which I never really recovered, I couldn't even brush my hair, or keep up for a couple of hours, I was totally exhausted.
So I really don't know what came first, it's a chicken or egg question. But is that important?
You live in Belgium which is condidered a Mecka for thyroid patients across Europe.
Really, is Belgium thyroid walhalla? Wow, I honestly didn't know that. Did you know that T3 isn't a recognized drug here? And getting dessicated thyroid e.g. is really difficult, most drs won't even think about prescribing that. There are the drs from Herthoge's school yes, but not a lot of people can afford them.
Just because some of your symptoms are the same as in hypothyroidism does not mean you are hypothyroid. Not everyone who is overweight and tired has hypothyroidism. Hypothyroidism is diagnosed based on a high TSH and below range FT4. Hashimotos is diagnosed based on TSH, T4, anti-TPO and anti-Tg. I would be really surprised if an endo diagnosed you with Hashimoto`s without proper testing.
In 1995, when I was put on levo, my levels were:
-anti-TPO <10 (<100) so no Hashi's
- TSH 11.9 MU/L (0.15-3)
- FT3: 2 NG/L (2.8-5)
- FT4: 7 (9-21.8)
But then, in 2010, the endo (the one who did the famous ITT) wrote: "patient is also know with an Hashimoto thyroiditis. It is known that Hashimotos goes with auto-immune adrenal insuffiency, also calles Smith-syndrome."
I don't know where he got the Hashi's bit, frankly. I will dig further in my tests but I can't recall any positive TPO-test.
--- Ah, I've found a result from 2015: anti-tpo: <0.5 (<5.6 iU/mL). So no Hashi's! ---
So you basically self-diagnosed and self-treated with T3 because of your symptoms?
No not all. As I wrote before I was put on levo by the specialist in internal medicine.
It was only at towards the end of the disastrous steroid experiment (which I didn't prescribe to myself either), when I was weaning off the steroids, that I had a very high RT3. At the time I was told I should get rid of that and I needed to go on T3 only for that. I know now that is not the case but back then I didn't know any better.
Well, you said a couple of hours ago ’No, I have never been diagnosed with overt hypothyroidism’. A TSH above 10 and low FTs mean overt hypothyroidism in the UK and most likely Belgium.
I don't have 1 single report saying that I had hypothyrodisme and not a single dr said this in exact words to me, hence my reply earlier.
If you went off levo only to lower rT3, and not because you felt bad on it, you may not need to be on T3 only.
I did feel bad on it, was on quite a high dosage at the end. Felt a lot better once on T3 only.
If you have low cortisol, that much T3 is likely to affect you adversely. You might be better off on levo with some T3.
I guess that is why my endo suggested it. I guess, because he didn't say and I can't reach him. Then why am I feeling like the walking dead since I've added in the levo? I am feeling so weird and detached on it, depressed also. Not me anymore.
I think you need to know your adrenal status first.
Weren't the ACTH-tests sufficient for that? What would you suggest then?
I think a real endocrinologist would be better for you than functional/natural doctors.
I am under treatment with an endo and have seen many over the years. They really don't know what to do with my, my current endo said as much. There's no way to correct adrenal insufficiency without HC or another similar steroid he said.
Thank you very much for your time and your very expert information. Appreciate it!
There is a coated version of steroid medicine called Deltacortril which does not dissolve in the stomach so is less hard on the stomach.
I know, I've discussed it with my endo at the time but this is not available in Belgium. I did try e.c. pred but it gave me issues with blood glucose.
What did your endo say when you went off the steroids?
When I was on steroids the endo I then saw (the one who put me on it wasn't active anymore) said I should never have been put on them, that I didn't have AI but that the meds would cause secondary AI.This one also stated that there's nothing wrong with levo, that the whole world is taking is (his words).
The functional dr I saw at the time said I would never be able to wean off the steroids.
Just an update for those interested: I've stopped the levo and after 2 days I felt the fog clearing up. Day 3: no more depression! As expected: increased headache. Still very wobbly legs and short of breath but I hope that will get better in time.
Thought: since I felt a difference so little time after stopping the levo, it can hardly been the levo I'm intolerant to, can it? Because it hasn't cleared out of my body yet?
I've read this post: healthunlocked.com/thyroidu... and wonder if I shouldn't have persevered after all... I stopped taking levo around week 8.
So frustrated right now, afraid I did the wrong thing.
Sorry if I've not followed the post as I get a bit confused.For myself it took 12 weeks for t4 to leave my system before t3 would work again, a lot of trial and error involved in that.
Also when on 62.5mcg of T3 only, was this taken as single dose or multiple doses? Was blood test for t3 taken on splitting dose day before with last dose 8-12 hours before test?
Wondering if not taking in single dose perhaps that might be what you need.
No apologies needed. I'm still learning how this all works myself!
I take my T3 in 4 doses: 3/4 tablet at 07.30, 3/4 tablet at 12.30, 3/4 tablet at 17.30, 1/4 dose at bedtime.
Blood test was done at 06.30 AM, fasting. I did not take my bedtime dose before that, so just my 5.30 PM dose.
Concerning the single dose: if I understand correctly, the T3 is out of your system after a couple of hours, right? If I miss a dose now, I really can feel that a couple of hourse later. How does that work if you only take 1 dose? Don't you crash badly then after 6 hrs or so?
Someone knowledgeable will hopefully come and answer that question.I just know t3 stays in your system for days. I know I can go without for a few days before I start to feel it.
For some people taking a split dose doesn't work and we basically feel like we are taking nothing. We have to flood out body with a big dose that slowly gets used up over the day.
We don't feel any over medicated symptoms whatsoever. This isn't the norm and if you usually split your dose and feel well then one single dose will likely give you hyper symptoms and feel terrible.
I just couldn't follow so wasn't sure how you dosed and felt.
the half life of T3 in the blood is about 1 and a half days ( it varies a little depending on circumstances)
So no, it's not all gone after a coupe of hours . it takes a few days to go completely.
there is a sharp peak in blood levels during the first 6 hrs (approx) after taking a dose .
The action of T3 in cells is a slightly different matter to its lifespan in the blood .. and is above my pay grade...lol
See the TOP graph in the image below... it's top line shows fT3 levels in the blood over 24hrs following a single dose. ( in this example the person is also taking levo)
Concerning the single dose: if I understand correctly, the T3 is out of your system after a couple of hours, right?
Wrong. The half life of T3 is about 24 hours IN THE BLOOD. But what gets into the cells stays there for about three days, and if you take T3 every day, it is continuously topped up.
How does that work if you only take 1 dose? Don't you crash badly then after 6 hrs or so?
No, not at all. I take mine all at once when I get up. I'm fine for the day. What's more, there have been occasions when I haven't taken it due to my routine being upset for whatever reason. And I don't even notice it.
This idea - which lots of people have - that T3 'runs out', like a pain-killer or something, is absolutely untrue. And people with resistance to thyroid hormone need to take enough in one go to flood the receptors in order for some of it to get into the cells. They take high doses in one go, but not all of it gets into the cells, of course, so they don't feel over-medicated, and don't have the feeling of 'running out' of T3.
Elevated RT3 is unwanted and destructive but not for reasons STTM state.
RT3 is driven by a thyroid enzyme called deiodinase D3 and elevated RT3 is synonymous of an up-regulated D3 that can prevent thyroid hormones/meds from working well.
RT3 becomes elevated mainly through inflammation, calories deficits and excess thyroid hormones (or thyroid hormones unable to be utilised well).
RT3 is only metabolised from FT4. If you have elevated RT3 on T3-only meds I would suspect your thyroid to still be making some T4.
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Adding T3 or increasing Levo? 
Update, since adding T3. Now what?
New endo refuses to oversee my care because I want to continue NDT, he only supports Levo, HELP!
New blood test results on T3 only, help please.
Results help please....specifically T3 conversion problem?
