Self Medicating didn't go so well for me, I have had to go back on Thyroxine - for now anyway!

A while back I decided to try a little T3 in addition to the T4 (levothyroxine) my GP was giving to me. It didn't do very much at all, so I tried T3 only for a few months and slight improvement in my symptoms. Couldn't get the same T3 but saw some Thyroid S that worked out cheaper to buy.

So decided to change to Thyroid S. Felt better. Much better.

But in recent blood tests unfortunately my TSH is now 63 whereas before it was 0.5 so I am out of range and the Endocrinologist has said I should go back on 100 mcg of Levothyroxine and stop taking the Thyroid S tablets. I feel awful again once back on the Levo, so not sure what to do next. Stick with it and hope it improves or change to something else then re-test and hope my TSH has come back down to normal?

36 Replies

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  • Really!!? I'm gobsmacked that your TSH would rise like that on NDT, especially since you felt better on it. Have you got a copy of your blood test results?

  • How much Thyroid S were you taking?

  • I was taking 2 x 60mg tablets a day

  • Hmm. I think - given you were feeling better on thyroid S - I'd go back on it. There's something very odd about that TSH result (not withstanding what SeasideSusie says below). Did you see it with your own eyes? Are we sure he didn't need new glasses to see where the decimal point was? ;) This doesn't make a whole lot of sense.

  • It is all very strange - but I have a print out now of the blood test results and they were taken at the hospital where they are processed so there really shouldn't have been a problem with them.

    Ha ha thats what I thought, he'd said 6.3 - so I said shall I just take another tablet then! I actually heard him nearly fall off his chair in horror!

    Even when I was first diagnosed with Hypothyroidism I was only ever about 14 as a high TSH, so where 63 has come from I just don't know.

    Although I am happy to treat myself, I am a little unsure when my blood test results are so far out of range, and must try to get them back to "close within range" some way or another. If that means feeling rough again then rough I must be!

  • redhotchestnut A few months ago you posted that you had TG antibodies of 623.5 healthunlocked.com/thyroidu... . Which confirms autoimmune thyroiditis aka Hashimoto's disease and explains why your TSH is 63 when it was 0.5 before. Antibody attacks will cause symptoms and test results to fluctuate as and when they are attacking. Did you go gluten free as advised. Many members find this helps enormously with reducing the antibody attacks, some people also need to be dairy free. Also, supplementing with selenium helps reduce antibody attacks. It would be a good idea for you to go gluten free, bear in mind it has to be completely and scrupulously gluten free though, almost or just a bit gluten free isn't good enough.

    You were given a couple of links to articles about Hashi's in the other post, here are a couple more:

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

    Do you have other blood test results besides the TSH? If you can post FT4 and FT3 results with reference ranges then members can make suggestions about your meds.

    It seems as though Thyroid-S suits you so maybe you should go back on it? I assume your endo was happy for you to be on it. I can't understand why your endo said to go back on Levo, has he based that purely on the high TSH? As the high TSH is caused by an antibody attack it will change at some point. Does your endo even know anything about Hashi's? Hashi's isn't actually treated, it's the resulting hypothyroidism that is treated and there doesn't seem to be a reason to change your meds if you felt better on it.

  • Yes I did have high TG antibodies I found out 5 months ago, but neither my GP nor the Endocrinologist seemed too bothered about it. I posted and asked about it as I didn't understand what it all meant. My TSH at that time though and always has been very low at between 0.005 and 1.5 for many years when on levothyroxine, so even if I had flare ups it never showed up in my TSH levels. I wasn't aware this was going to change when going onto NDT as it's never done it before? Gluten free didn't make enough changes to warrant the strictness of the diet (whilst on levo that was). Perhaps I should try it again along with dairy free too?

    I've been told to go back on the Levothyroxine to bring the TSH down, but if it's not related to whether or not I take Levothyroxine then it'll probably make no difference anyway to it?

    I don't know how much he know's about Hashimoto's probably not much as he never mentions it, nor refers to it as being a problem?

  • redhotchestnut Maybe you just weren't tested at the time your TSH was high before, tests are usually once a year, maybe twice, antibodies can fluctuate all the time.

    T3 will lower TSH and NDT contains T3 so it would be very unusual if NDT is the cause of your TSH rising (if, as Jazz says, it actually is 63 - have you got a copy of your results?) It's usually suppressed when patients are on either of them.

    I don't think going back on Levo is the answer to bringing down your TSH. Levo is T4, NDT is 38mcg T4 with 9mcg T3 so your still getting a lot of T4 in NDT.

    How long did you try being gluten free?

    Are your vitamins and minerals - B12, Vit D, ferritin and folate - all at optimal levels?

  • I'm not sure I've ever seen or heard of the antibodies being tested before, only the test I had 5 months ago. My TSH is checked every two months however, and it's never been so high even when the antibodies were high my TSH was still low, this is what's just so bizarre and I cannot change my whole lifestyle and diet by going completely gluten free and dairy free, in the hope that by doing that alone will reduce my TSH. I don't think it would happen. Taking Levo "will" reduce the TSH, and taking ever more or a higher dose, will reduce the TSH even more. I only know this from taking it for years and playing around with the dosages.

    I think the Endo (who isn't totally OK with me taking NDT, but will work around me, and support me accordingly if I want to take it) feels the NDT I've been taking contains very little or no T4 and this is why my levels have risen. Not sure how I can prove or dis-prove this statement?

    Gluten free I tried for around 5 weeks. I am looking into the Paleo diet, but I would have to see significant improvements in myself wholly related to what I am eating before I make this life-change. I will always need some sort of medication for my thyroid, and I do believe this is where my problem lies, its just getting the right medication and also falling somewhere near to where my blood levels should be.

    Vitamins and mineral levels are fine, ferritin wasnt tested this time, but last test 8 weeks ago was a very high ferritin and has been for a while, so I don't have that tested quite so frequently now as it's pretty stable so it seems.

    Thanks for all the information on Hashimoto's - its not something most of us know anything about, and clearly its very important in the way forward. And there's more that can be done than we know about.

  • redhotchestnut Here is a list of the contents of different brands of NDT, scroll down for Thyroid S but I'm not sure this will be good enough evidence for your endo stopthethyroidmadness.com/a...

    However, just a thought, did you buy your Thyroid S from a member-recommended supplier (there are two or three reliable ones in Thailand)? Or did you buy it from that big selling site that sells just about everything and is named after a rain forest?

  • Thanks Susie for the information, he was quite good on the day I told him I was taking it and he looked up the contects and what it contained quicker than I could on his phone. I am afraid to say it was bought from an even worse place than the rain forest place, although I thought I'd heard others had bought it from where I got it from, there are different sellers on there I realised, so I got a bit confused, mind I blame it on brain fog I was suffering at the time.

    We are now very "dubious" about whether the contents are genuine and authentic?

  • redhotchestnut Mmmmmmmmmmm, I know of someone who bought from a non-member recommended site and they knew straight away it wasn't genuine and taking some made her unwell. The seller wouldn't/couldn't provide a certificate of authenticity so she concluded they were fake. I wonder if yours aren't genuine.

    If you want reliable and recommended sites (I don't use NDT but know people who use these sites and everything has always been fine) then PM me for details.

  • If I were you, I would ask for a retest, because that just doesn't make any sense. Even a Hashi's swing wouldn't push your TSH up that far. I think they made a mistake in the lab.

    But if you felt well on Thyroid S, I would stick with it, if I were you. Your endo is obviously just prejudice against NDT and only 'understands' levo.

  • I am going to be retested in 2 weeks time, but thats after I've been on Levo for 3 weeks. It's totally off the scale isn't it? And so unlike me too, I don't have swings like that in my TSH nor have done ever?

    I did ask the Endo if there was "anything" else I could take instead of Levo and he said NO. They are trained to deal with Levo and trained to prescribe it. They must honestly believe in it, or they say it so many times a day, they brain wash themselves into believing it?

    I am afraid of staying on the Thyroid S when my TSH is showing so high. The family aren't happy with me trialling it, nor going against the doctors. So when I went on it, I said I would come off it "if I felt unwell" at all. Which I didn't. So I am as totally shocked as anyone about these recent tests. Do they get them wrong? Perhaps I'll do a private blood test myself just the TSH?

  • If you feel well, TSH isn't really that important - what were your Free T4 and Free t3 results?

  • Why are you afraid of staying on the Thyroid S when your TSH is high? The point of Thyroid S is to bring down the TSH, and NDT will do it much better than Levo, because it contains T3. What you're saying there, just isn't logical.

    It has been know for tests to be wrong. And I'm surprised your endo didn't question it. I would have expected him to immediately ask for a new test.

    It's not so much that doctors believe that levo is the best, it's just that they never question what they were taught in med school - or how they interpreted what they were taught in med school. It would seem that the type of person that is attracted to medicine, just doesn't have an inquiring mind.

  • I suppose I am frightened of staying on it as yes I agree it's supposed to bring down the TSH. But I started off with a TSH of 0.5 then took the Thyroid S tablets for 6-8 weeks, and my TSH is now reading 63. So I have to agree with the Endo that the Thyroid S doesn't "appear" to be doing anything? Does that make more sense and logic to you. Sorry if I am sounding illogical, maybe my brain isn't functioning properly either?

    I can organise my own re-test, I will just book myself in at the local GP's they're pretty good at doing tests when I ask for them.

  • No, that doesn't make any sense at all. Unless you had a considerable reduction in dose when you changed over, Thyroid S would not make your TSH rise like that.

  • I'm not sure how better to explain it? If the Thyroid S wasn't actually real authentic Thyroid S but just "talcum powder" - so effectively I'd taken zero meds at all for 8 weeks - perhaps that's why my TSH has risen like that?

  • If you bought it from a site recommended to you by someone on here, then there is little chance that it would be fake, talc or otherwise. And a TSH is very unlikely to rise that much in six weeks. I sstopped my T3 only for 6 months, and it only went from 0 to 34. It's far more likely thant there was ssomething wrong with the test than with the Thyroid S.

  • I am going to get retested as soon as I can book in a test at my GP's, which hopefully will be next week. I will of course report back. I've not had any "duff" or strange variations like this before ever in my bloods taken. So unsure what to make of it all. Sorry.

  • Well, as Diogenes explains, it could be anti-TSH antibodies, falsifying the result.

    There's not enough profit in it to make fake Thyroid S tablets, if that's what you're all thinking. I realise that's what most people think - those who don't know - when you mention buying medication on the internet, but it's just not worth it for NDT and T3, etc.

  • I'm suspicious of this TSH result. Antibodies that directly affect a particular version of the test can come about quite quickly and change quickly too. I'd try to get another TSH done somewhere else by a different method which might not be susceptible.

  • So if it's like a week later having a test - my TSH could have dropped back down to 0.05 anyway whatever I am taking, is this what you are saying diogenes?

  • No. The problem if it exists is likely to hang around for at least a little while. Or it might have changed. The essential thing is to get a TSH done by another test method so you can be sure of the meaning of any results. Suddenly going up to 63 isn't a physiological response; TSH doesn't change that fast.

  • Labs mix up samples occasionally. I have had it happen to my hypo dog. The first time I reduced his levo, and two weeks later he was really poorly. The second time I refused to reduce his meds and the retest came back at his normal levels.

    You felt better on Thyroid S? So its highly unlikely that your TSH rose so sharply - you would probably feel dreadful with a TSH that high - I wouldn't be able to move!

    In the good old days they didn't have tests, and treated on symptoms. Not as scientific, but a lot of us wish they still worked like that.

    Only you can decide what to do. Just be aware that doctors are more interested in test results than they are how you feel. I cannot help feeling that a sensible doctor would have retested immediately, rather than assuming its the stuff that is making you feel better.

  • Thats what I don't get Ruthi - with a TSH that high, I would have felt really bad. I remember when it was 10 or 12 I felt so ill I couldn't get out of bed. I agree doctors are more interested in test results, so I will now arrange another blood test to check for myself then make a decision from there as to what to do.

  • Good on you!

    I think one of the hardest lessons we have to learn is that we need to take our health into our own hands. Nice theory, but that means being VERY assertive with doctors who are not used to us taking control. And that is not easy for anyone, but especially for those of us who aren't naturally bolshie!

  • I remember reading somewhere many years ago when I was searching for answers for my hypo daughter that if you have Hashi's, which you clearly do, then NDT is not always the best option as it can raise your thyroid antibodies. And when your antibodies go up because your thyroid gland is being destroyed your tsh will also rise due to the bodies feedback loop. This is in fact what happened to my daughter, her antibodies rose really quickly on NDT and T4 was awful for her. The only way her tsh was suppressed and antibodies brought down was through t3 only therapy. It has made a world of difference to her. It is also critical to have your adrenals healthy and iron levels good too, as these two factors assist in thyroid meds getting into the receptor cells instead of going to reverse t3 and blocking the cell receptor sites. I would think that you feeling poorly on t4 (levo) was a sign your body was converting to rt3 instead of the much needed t3. Have a read of the info on rt3-adrenals.org, it explains how everything works really well. There is real hope to feel better. Take care :)

  • Jenny - that's very interesting, and probably sounds the most likely scenario of all. More likely than probably as I was thinking the Thyroid S were fakes, and there being a mistake of the blood tests (although I will still get another blood test done just to rule that one out as it's easy to do). My iron levels are good, I am not sure how to check my adrenals, but will have a look at the website and see what information I can grab from there. I am fine to go back on T3 only, although when on that my TSH was beginning to rise higher than it is normally, but not abnormally so.

  • Yes have a read of the info, adrenals are tested with a 24hr saliva test. All the info is there, including how your iron profile should look - not just in range but where saturation levels should be too, higher than doctors recommend. It may be that you were not on enough t3 perhaps. It is a very individual thing, but average dose is normally somewhere between 75 - 100mcg. My daughter needs more due to resistance issues. Good luck and take care :)

  • Perhaps my iron levels aren't as good as I thought then, I don't think they've ever "been" to saturation levels, I seem to struggle to get them up that high no matter what I take.

    No I wasn't on a dose anywhere near 75-100mcg when I was taking it. How do you know your daughter has resistance issues and what is she taking, how did you know with her when to increase the T3, presumably started on low dose or smaller amounts?

  • With iron saturation, here in Australia an iron panel shows 4 components - iron, ferritin, transferrin and transferrin saturation. I presume you can have the same tests, not just ferritin. And doctors say if iron and its related components are within range they are fine, however as the rt3-adrenals site sets out in its info, saturation range maybe something like 13 -35% and optimal level should be near the higher end. Sadly just like doctors with "normal thyroid"!

    For Georgie, even though she has replacement cortisol therapy in place and iron okay, she still needs high doses of t3 to feel anywhere near normal, over 100mcg and I know she is still not optimised as she has some hypo symptoms remaining.

    There is a really good protocol for t3 therapy on the site and yes you start quite low and after a week or two you take 5 days of average temperatures to monitor how you are going along with symptoms, then slowly add small increases. Most importantly, before increasing too much, you need to assess your adrenal status, as many people will feel intolerant of too much t3 and blame the t3 but it is actually your adrenals not producing the cortisol you need to carry the t3 to the receptor sites.

  • Please keep us posted as to how you get on but I suspect a rough test or a typo! Be good to know how things work out for you as I'm sure you aren't doing anything wrong or using duff medication. Have you seen a printout of your results or just been told them. I'm sure if the result is genuine and not a typo then they will have made some comment

  • I have a print out of the tests here, and they were this time done at the hospital on an endo visit. I've just booked one for next week at the doctors so will have the results the week after.

    For continuity I have kept to the same dose of Thyroid S so will see what result comes back.

    "if the result is genuine and not a typo then they will have made some comment" - who do you mean by "they" please?

  • The lab manager usually posts a comment if the results are not 'normal' the most common being over medicated when we aren't but I wondered if there wasn't a comment it sounds like a typo especially if you haven't seen the actually results sheet but been sent a letter with the results on.

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