Subclinical, mild and severe form of hypothyroidism - same thyroid hormone dosage?

I wonder and I couldn't find much information while doing Internet search, do people with subclinical, mild and severe form of hypothyroidism always end up on the same dose of thyroid hormone medication? eg. standard dose of levothyroxine seems to be around 100mcg regardless of your TSH, t4, t3 levels at the point of diagnosis.

What are your experiences?

Thank you for sharing.

E.

33 Replies

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  • Hi Edysia, it doesn't matter where you start from, if you have a thyroid hormone deficiency, then the correct dose of medication is the one that *makes you feel well*. This is an individual thing, and will at least partly depend on whether or not your thyroid is able to produce any hormones at all.

  • Thank you Rod. However, don't you think, that even in situation where thyroid still can produce some hormones by itself, after beginning of thyroid hormone therapy, the thyroid gradually shuts down as it becomes reliant on medication? So if you start even at point of subclinical hypothyroidism you will need same amount of hormone as people with TSH 100 etc? ( I am not thinking Hashimoto's as this is autoimmune disorder, so with time thyroid will become damaged further by antibodies)

  • I don't think that is necessarily the case. I do know of people who are only on 75mcg and very well. It does seem to be, however, that some people start off only needing a low dose to then go on to need much higher doses. Whether this is because the thyroid is shutting down because of the thyroid replacement making it lazy, I don't know. In many cases of subclinical hypothyroidism, it is just the start of the thyroid starting to fail; a process that can take many years.

    Another reason that I don't think the thyroid becomes dependant on thyroxine is that many people with post-partum hypothyroidism actually recover within a couple of years. If the thyroid had shut down through becoming dependant, I don't think this would happen.

    I'm not an expert; I'm just stating what I understand, which could very much bet wrong!

  • Hi Edysia - I think eveyone is different - some people end up on 275mcg and others 100mcg as you say. It probably depends on lots of things such as how good their body is at absorbing the thyroid hormones and like RA says above, whether they have any of their own thyroid function left. xx

  • And whether or not their doctor is prepared to give them enough to make them well or if he's scared stiff of hormones!

  • Hi Clare. Is it possible to stay stable on 75mcg or 100mcg for 10 or 20 years? Does anybody is ever stable with their dose over longer period of time?

    I am wondering if thyroid hormones medication work same way as oral birth control pills ( which consists of hormones too, but different kind of course). Birth control pills shut down your ovaries, and your body relies only on exogenous sex hormones only. Is that the same with thyroid hormones? Do they slowly replace your own thyroid function even if you have some function left?

  • Is that the same with thyroid hormones? Do they slowly replace your own thyroid function even if you have some function left?

    Yes, this can apparently happen. But it doesn't always. I know someone (a male) who has been on less than full replacement dose of levothyroxine for very many years. He is heading towards eighty years old now :)

  • Me too. He's also nearly 80! He started with Graves, had treatment and became hypo many years ago. I also know a couple of women who have been on lowish doses for many years. Looks like not all hope is lost :)

  • I think the 'thyroid shutting down' and 'becoming fully dependent on exogenous' is a rumour brought about largely by doctors who don't fully understand what it's all about!

  • I'm inclined to agree. I think what is happening most of the time is that the thyroid is shutting down already and would have done so even without exogenous thyroid hormones. I'm sure there are some exceptions though.

  • No, I didn't here that from doctors, they do not answer any questions at all. I am just trying to figure out how it really works ? The whole perspective on being permanently dependant on any medications really scares me :(

  • don't be scared (hugs)

  • Many of us were upset at the the idea of being 'on medication for life' when we first started. It takes time to come to terms with things. But as the medication starts working to make you feel better, you become less concerned about taking it every day, and gradually learn to accept it as part of everyday life, just like eating and drinking :) If it means you can live a good life instead of being ill all the time, then really it's something to be happy about instead of fearful about. That's the way I see it now anyway :)

  • I'd like to have the answer as well. We are all so differently complicated. My experience is that I am told I have no gland and yet I was only on 1/2 grain Armour for a few years but in my sixties I went to a full grain because my tsh went upwards of 3.

    I have no idea why but wonder if some other body part produces T3 even though I don't produce any T4. I think they are still discovering some aspects of this hormone.

  • Hi again - I'm afraid I don't really know the answer but I do know that some people are stable on a dose which is not a full replacement dose e.g. 75mcg, so they must still have some remaining thyroid function. People seem to require such differing levels. I wouldn't say I am stable yet - have very slowly increased my Armour from 1/2 a grain to 2.25 but don't think quite there yet... xx

  • well, by my blood results many doctors (but not all) say I didn't even have a thyroid problem.....and I ended up needing 140mcg of 'pure T3' which if it is really 4 to 5 stronger than T4 that means approx as much as 560 to 700mcg of thyroxine! HAHAHAHAHAHAHAHA

    However my body would 'not' tolerate that much thyroxine, T4 is something my body did not like much, I can have a little but not too much of it.

  • Thank you nobodysdriving. Do you know the cause of your hypothyroidism ? Have you ever been diagnosed with Hashimoto's ?

  • Hi Edysia,

    I don't think I have hashimotos, I just don't seem to have the signs/symptoms of it and my antibodies (tested three times last year) came back extremely low (2, the highest was 9 I think).

    My blood tests showed a TSH barely over range (it was 4.27, range 0.24 to 4.20) and my fT4 was 17.8 (range 11 to 22 so not too bad), however I was quite unwell despite having no other apparent problems, my b12 was good, my vitamin D was good so was my iron/ferritin etc

    I managed to make my GP diagnose me (I diagnosed myself and then convinced GP) but then went privately to Dr S as my GP was going to keep me on thyroxine and under-medicate me.

    I got totally well with Dr S, first trying NDT then T3 and now am at this 'supra-physiological' dose of T3.

    I believe I must have had 'euthyroid hypometabolism' something described by Dr John Lowe (RIP) who said that this is people with normal thyroid function results but hypometabolic (ie thyroid hormones not being enough for their cells) and these people 'only' get well on a high dose of T3.

  • Sounds *MUCH* like my situation (although I generally don't need such massive doses of NDT or T3 to feel OK). It's been going on for years - with the added situation of KNOWING that my TSH levels are actually suppressed by Opiate pain drugs (a known but very little understood situation I am disabled and have chronic severe pain), so I have rarely been over a TSH of 5, mostly 2.5 to 3.5. Would you believe, my local Lab's range goes right up to 5.0 so being considered "sub-clinical" is just not happening for me, as it's only been that high for transient periods, although repeatedly! (The opiates have caused a lot more problems than just Thyroid btw!) I am well aware that in much of the civilised world, I would be considered hypothyroid on these figures alone, so it's not just a "feeling" it's backed up by the fact I would be diagnosed certainly hypo in many places.

    I have a recent complication of very significant changes to my Opiate dosage which, (somehow) made me suddenly hyper on the 2.5gr of Thyroid-s that I had been stable on for many many, months, so, being on-my-own in dealing with the thyroid issue, the palpitations were severe, and I panicked a little (A LOT actually!) and I ended up weaning myself right off NDT, and although my own thyroid has kicked in reasonably well, (my neck continually swells and shrinks however!) proving that taking thyroid replacements does not fully "turn it off" forever.

    Of course I am now steadily plunging into an increasing Hypo state again, despite TSH never going beyond 5.02, now it's down to just 3.5 again!

    My antibody levels have never been very high either (although I forget what they were last time)

    A few years ago, I initially tried clearing ReverseT3 using T3 only, I was fine like that for a while after, but it clearly comes back in me (maybe the chronic pain causing it), and had to go to NDT for relief and I was pretty well for a long time until this Opiate change caused absolute turmoil!

    In the face of the tyrannical TSH level, I either put up with felling lousy when I know how much better I can be, or go back to NDT again and slowly increase the dose again to hopefully find a new stable level, and hope the opiates are not going to interfere too much.

    My GP, who is generally very supportive (but hog-tied by the system and his lack of understanding) will NOT however refer me to Dr. S, due to his perceived reputation caused by the GMC problems; so despite him being at very easy reach for me in Birmingham, so I am left self treating if I want to get back to the way I was again :-(

    Apart from feeling plain lousy when hypo, I certainly don't want to end up like many of my family - my Grandmother was successfully on NDT back in her days - yes, the women get diagnosed early enough but all remain marginally under-treated on L-thyroxine, (my mother developed heart failure as a result) and the men are EVENTUALLY all diagnosed Hypo, but that's usually in their 70's when it's too late and the long term problems are well set-in - I have seen so much of it over the years, I can spot it a mile off.

  • Hi Picton. Which opiates do you take is it codeine or something stronger? Maybe you can try different painkillers?

  • Long past Codeine. Though my drug-induced problems started back then even (20 years ago)...Opiates cause a LOT of problems with metabolism the HPTA and hormones, (much of which is not well studied or understood despite the huge umber of opiate users) but I would not be sitting here typing this without them, so like everything else in life, it's a trade off, suffer the extremes of pain, and the resultant depression too so you kill yourself, or reduce the pain to just barely tolerable levels, pot up with the numerous and severe side effects of the drugs and do your best to manage them!

    I use Buprenorphine pain patches.... been through a LOT of other strong opiates over 2012 in particular due to a sudden worsening; and for the time being, this one is working for me at a much lower dose than any other, with far better results and lower side effects too. "The only way is up" unfortunately is the life experience of an opiate user, if the source of pain can't be removed!

    I didn't expect such dramatic impact on thyroid issues though, even more so when you consider that conventional medical thinking is that in animals opiates play havoc with thyroid, just like they do with lots of other hormones but don't in humans (what a crock, why would that be!)... sadly I appear NOT to be human! ;-)

    So, I get the havoc in other hormones AND thyroid too. it means if I significantly change dosage again, I need to radically re-adjust thyroid dosage - at least now I know!

  • Yes Nobodysdriving :) They should give everyone T3! It's the most important out of all thyroid hormones anyway. Why to bother thyroid with conversion of T4 to T3. Unfortunately T3 is much more expensive

  • Of course it should be MUCH more widely available, but

    I can see lots of reasons why being on T3 only is not a unuversal solution.

    [BTW, T3 is more expensive, but in the rest of the world not REALLY as dramatically expensive as it ends up costing here!]

    What about the other thyroid hormones which are not in L-thyroxine (T4)? What about substances such as Calcitonin?

    Making sure all the missing substances are properly replaced makes more of a sensible argument for Natural dessicated thyroid rather than synthetic T3 only, although even then, it's not at EXACTLY the same proportions as the human thyroid gland produces.

    If you try living on (synthetic) T3 only (I have done to lower Reverse T3 levels); to get a comfortable stable level, it means dosing at least 3 times a day, maybe more; so is a total chore - slow release T3 is notoriously unreliable in how it delivers the dose, so an improvement to that would be needed before I would want to consider it as the ONLY replacement for long term use - first, the very short half life of T3 means if you are on T3 only, you really can NOT risk being without it for long. Forgetting a dose can be actually dangerous - Yes you can do fine on just T3 only, but if you are taking some T4 it means you can miss a dose with only minor inconvenience.

    Another argument is, If the body is intended to have T4, why shouldn't it be replaced too for optimal well-being... OK, I accept that some situations mean people don't' do well on T4 at all, (even when on T3 too) but that may be due to various reasons, but for everyone, T3 only really isn't something I would want to have to live on unless it was the only way.

  • I think this is a fascinating question, and I'm sure there are differences within us 'hypothyroids'. I take 125mg levothyroxine and am slightly underdosed at the moment (off to endocrinologist in a few weeks...). I was diagnosed and treated as subclinical 7 years ago at age 36. Looking back at symptoms, I reckon I've had this since my late 20s. My dose is creeping up slowly. My colleague here at work has had a goitre since she was 7 and has been treated since puberty. She is now on 300mcg levothyroxine and 120mcg liothyronine (T3). We are both so different. I never had a goitre and never put on weight. I am always cold. She is always hot, somewhat obese (despite eating like a fly) and had a goitre (now reduced). Surely there must be some differences between us and we should be treated accordingly, not just with one drug at one dose. I can't think of many other diseases with only one treatment option and without subclassifications of the disease.

  • Hi ejh 1. If you are still feeling cold maybe you have t4 to t3 conversion problem? You might need to switch from levothyroxine to NDT or T3. It might be better for you instead of increasing levothyroxine dose.

    E xx

  • Hi

    Interesting you say this. I know I have a conversion problem and am off to see my endocrinologist in 2 weeks to probably be prescribed T3. He wanted to try me on a stable dose of eltroxin (not generic levothyroxine) for a few months (without me taking the extra pills that I always do!) as the supply of levothyroxine has been so poor recently. I'm not that ill compared to a lot of people on this website, and can certainly function, so I'm happy to keep him happy with the slow approach.

    Interesting that we are all afflicted in different ways. If I won the lottery, I'd fund a research centre to investigate thyroid disease properly!!!. I find it fascinating (but then I'm a rather sad boring scientist)!

    Cheers

    Emma

  • How long have you been on levothyroxine Emma? Is it 7 years already ( you said that you have been diagnosed 7 years ago?) have you been feeling unwell on levothyroxine since the beginning or did it get worse over the years?

    We need scientists by the way;)!

  • If you look at the issue from a very simplistic, almost mechanical, point of view, you can argue that there are two possibilities.

    If you start on 50 mcg and that reduces the amount your own thyroid is producing by less than 50 mcg (even 49 mcg!), that is a net increase in thyroid hormone and you might stabilise there.

    If you start on 50 mcg and that reduces the amount your own thyroid is producing by more than 50 mcg (even 51 mcg), that is a net decrease in thyroid hormone and you might need increases, possibly until on full replacement dose.

    However, this ignores the fact that our bodies and the control mechanisms are not that simple.

    Also, you cannot take a dose in isolation. If nothing else, weight has a considerable bearing on dosage. Two people on 125 mcg - one could be at full replacement dose for person 1, and another at less than half that for person 2.

    Also, if you have not got enough thyroid hormone and the only known way of increasing your thyroid hormone level is to take some form of thyroid hormone tablet, then that is what you have to do. You cannot carry on with inadequate thyroid hormone and expect any level of recovery.

    Let's face it,even if in a few months you were to find another answer, you have to get from here to there.

    Rod

  • Yes. It looks like there is always going to be a hassle:( the chemical processes in our bodies are in constant flux so if one factor changes ( and things change all the time) then the other parts of the whole are affected too.

    I am still in a state of disbelief and shock that this can be permanent for me.

  • I'm on 175mcg of levothyroxine and my gp has said it had levelled off. This has been over a year now but still feel really bad with headaches and bad neck pain 3/4 days a week and my whole body hurts and have no energy still. Also my weight has not started to drop and I'm still putting on weight. I also have to sleep in the afternoon but can fall to sleep anytime of the day and just can't stop myself falling asleep. My joints are bad also and have had spinal surgery and knee surgery and now my hand knuckles are painfully and I'm dropping things. I thought I would start to feel better but have not. Can anyone suggest anything I can do.

  • Have you checked your vitamin levels? Also, I wouldn't trust your GP to tell you that you are OK without knowing what the test results are (with ranges). Sounds like your are still underdosed.

  • Thanks for getting back to me. No not had vitamin levels done. Doctor says Its down to my Fybromyalgia which was diagnosed about 15 years ago. Always palm me off. Could it be T3 levels or Hashimoto's as someone said it could be that.

  • if you've been diagnosed with fibromyalgia then there is a fair chance your body needs T3, Dr John Lowe treated many fibromyalgia patients and only successfully with T3 containing medications.

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