I've been on T3 only for almost 15 years, on levo before that. Kept having hypo symptoms despite high dosage of levo and my RT3 went through the roof (which most endos pooh-pooh away), so my dr at the time advised me to have a go at T3, for a short while.
After some time I was told to go on dessicated thyroid meds but I didn't manage. Every time I tried to add some dessicated to my T3 (and slightly decreased the latter) I crashed badly. Dr kept upping my dessicated which made me crash even worse, I felt like a zombie dying all over again. The moment I stopped taking the dessicated, the lights went on again, so I didn't dare try again.
Fast forward to the recent past and present: I saw a couple of endos and they all say more or less the same thing: stop the T3 completely or partially and add levo back in. I'm terrified to do so especially since T3 isn't a registered drug in Belgium where I live ad most drs have no clue how to work with it.
My adrenals are in very poor condition and have been deteriorating fast over the last years, taking steroids isn't an option for me (been there, done that), they simply make me even worse for all kinds of reasons (I can't tolerate almost anything anymore regarding meds and supplements). I have been told that T3 only can be hard on the adrenals, don't know if this is true.
I'm stuck between a rock and hard place and there's no-one I can turn to for advice where I live. I've been looking for a diagram or something that says how to switch from T3 to T4 (or partially) but can't seem to find one.
How does one go about this? And what are the drawbacks?
I'm 62 old and I would like to add a couple of acceptable years to that number. At the moment I'm at my wits end.
Any advice is welcome.
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Soloslim
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Hypo people need OPTIMAL vitamin levels to be able to use their thyroid hormone well.
Aout every member here supplements low/deficient vitamin levels caused by the low stomach acid from being hypo.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
I am unable to tolerate about anything, I'm ridiculously sensitive. The simplest supplement makes me feel terrible. My body needs a LOT but doesn't accept anything. Moreover I have serious stomach and tummy issues and cannot tolerate PPI's (of course) so that I cannot take anything for pain.
Apparantly I do not have low stomach acid, but I do have chronic esophagus inflammation.
Some alternative drs told me I cannot detox at all.
I've given up trying. I could build a mansion with pool with the money I've spent on treatments and drs over the years. I'm 65 now and unwell since childhood really.
Ferritin is a bit on the high side, has been for years, but the other iron parameters are OK. I am a walking chronic inflammation, so that could explain the ferritin.
I get 2 B12 shots a week, so my B12 is immeasureably high.
D3 is low normal, I used to supplement but cannot take the pellets anymore. I've just order drops to see what my body will say to them.
The testing isn't really the problem, it's the treating...
Its awful if you have tried so much and made no progress.
There are more companies now making 'clean' supplements without all the added extra excipients which is helpful. Some people find that liquids work better for them and you can very slowly increase the amount you are taking, starting with a tiny amount.
I know it sounds like I'm being negative with al my no's but believe me, it's not that. It's just that I've tried so many things over the years. And I know it's frustrating when you're trying to help) like you do and you get a no to everything you suggest.
But why do you want to go back on to levo if you know T4 doesn't agree with you? Especially as the idea scares you. That doesn't sound like a very good idea to me. T4 doesn't agree with me, either, and I couldn't tolerate NDT, either. I've been on T3 mono-therapy for many years, now. From time to time, I have tried to introduce T4 back into the mixture, different doses, different brands, but it never works. And I'm always relieved when I decide to give up on it.
I have never heard that T3 mono-therapy is hard on the adrenals. I think mine are in pretty good shape, now. The were suffering quite a lot 15 or so years ago, and I spent about two years on HydroCortisone but managed to wean myself off it. They're much better now.
But, if you really want to reduce your T3 and reintroduce T4, the thing is to do it very slowly. I doubt you ever will find any sort of diagram to help you, but it's pretty much a matter of common sense.
- First make sure all your nutrients are optimal.
- Then remember to only change one thing at a time. As T4 has a longer half-life than T3, and also has to be converted into T3 before it does anything much, I would start with the addition of 12.5 or 25 mcg T4 - probably 12.5 - for about two weeks. Then reduce your T3 by 5 mcg.
- Stay on that dose for about six weeks and retest. See what's happened to your levels.
- Keep a symptom diary, were you note the dates of changes and how much, and note day to day how you feel.
- It will take a long time but at least you will stay in touch with your body. A doctor is likely to say something like: reduce your T3 by half and add 50 mcg T4 - or something equally unhelpful. So, do it gently, at your own pace, by yourself.
Because all the endos I've seen over the years keep telling me I should. And there's a sliver of hope that adding back T4 in will make me feel more like a human being.
The endos keep telling me I'm overmedicated because of my high FT3, but of course it is high since I'm on T3 only. The last one had bloodwork done 3 hours after last dose and then said my FT3 was through the roof. Duh.
I do feel hyperisch sometimes: trembling, nervous, but I don't have any energy, am quite depressed. Hard to tell which symtoms are adrenal and which thyroid.
I was on HC for a couple of years and my stomach kind of exploded. Cannot take PPI's, so the HC was a no go. Tried prednisolone, taking HC anally (left me with a baboon behind). I did have more physical energy but I was extremely dizzy and unfocused, had headaches from hell and felt like zombie. Even though the drs told me I couldn't do it and shouldn't, I weaned myself off them also.
My nutrients are not optimal at all. My intestines are BAD (thanks to years of antibiotics) and I cannot supplement with almost anything because of intolerance. I know I NEED a lot, but my body won't accept it. So that's a huge problem.
Thanks a lot or the info, it is very useful. Being followed up by an endo is an issue, I have to wait months for an appointment and my GP is utterly clueless.
Because all the endos I've seen over the years keep telling me I should. And there's a sliver of hope that adding back T4 in will make me feel more like a human being.
And you really believe they know what they're talking about? Most of them are diabetes specialists, with scant knowledge of thyroid.
But, the important word there is 'adding'. By all means try adding some T4 to your T3, slowly and gently, monitoring carefully how you feel at each step of the way. But, going back to T4 mono-therapy would be a very bad idea, in my opinion.
As I said, I take T3 only, and adding in T4 makes me feel less of a human being, not more. Your phrase 'I stopped taking the dessicated, the lights went on again' neatly sums up how I felt, too. My brain suddenly started to function again. And it was one of those light-bulb moments when I suddenly thought: it was the T4 all the time! That's why I couldn't function!
The endos keep telling me I'm overmedicated because of my high FT3, but of course it is high since I'm on T3 only.
Well, that doesn't necessarily follow. Depends how much T3 you're taking, and how high your FT3 is. Mine - I believe - is always slightly over-range but I haven't had a blood test in years! But, what these stupid endos don't understand is that it doesn't really matter how much you're taking, nor how high your FT3 is, what matters is how much of it gets into the cells. A blood test only tells you that: how much is in the blood. It doesn't do anything in the blood. It just sits there until it is taken up by the cells or excreted. And people like you and me, who don't do well on T3, usually turn out to have some level of thyroid hormone resistance that stops it getting into the cells. But, they are incapable of taking that into consideration.
Cannot take PPI's, so the HC was a no go.
Sorry, what's the connection between PPIs and HC? I didn't take PPIs when I took HC. It was never suggested. You probably have low stomach acid, anyway - most hypos do - so PPIs would just make the problem worse.
Even though the drs told me I couldn't do it and shouldn't, I weaned myself off them also.
How were you taking the HC? If you were spreading it out through the day, then I can understand their concern. But, if you only took it in the morning, like I did, then there's no reason why you shouldn't come off it.
My nutrients are not optimal at all. My intestines are BAD (thanks to years of antibiotics) and I cannot supplement with almost anything because of intolerance.
As I said, you more than likely have low stomach acid. Can you tolerate vit C? Taking vit C with just about everything usually helps.
Being followed up by an endo is an issue, I have to wait months for an appointment and my GP is utterly clueless.
And you really believe they know what they're talking about? Most of them are diabetes specialists, with scant knowledge of thyroid.
I agree. They don't take RT3 in account at all (I wonder if they even know what it means) and the fact that T3 isn't available/registered in Belgium does not help a lot. There are some drs who know what they are talking about (school of dr. Hertoghe) and I saw one of them some years ago. She was very very helpful and understanding but didn't understand why I reacted to meds and supplements the way I did. (crash on just about everything). Because she thought I had bad intestinal issues (and she was right) she sent me to a colleague of hers who kind of specializes in this but he said he couldn't help me either because my case was too complicated (read: hopeless).
But anyway, just saying: some do know more than others, but the waiting lists are very long and and they are very very expensive.
Well, that doesn't necessarily follow. Depends how much T3 you're taking, and how high your FT3 is.
I usually take 62.5 mcg of Tiromel and my most recent blood work showed a FT4 of 5.76 (0.27-4.2)
Sorry, what's the connection between PPIs and HC?
The HC hurt my stomach/esophagus badly, I threw up blood after some time and couldn't keep anything down anymore. Usually people with stomach issues get an rx for ppi's, but as I've said, can't take those.
How were you taking the HC?
Yes, I took HC 4 times a day if I recall correctly. Orally first, then when that didn't go well, I tried putting the capsules up my ***. Not a great succes either. I was then put on pred and I took that once a day I think.
Can you tolerate vit C?
I used to be able to tolerate the buffered kind, I could try that again and see how that goes. But that kind of vit C does not up the stomach acid. The unbuffered kind is a big no.
Sounds to me like you need someone to sort out your stomach/gut issues before trying to sort out the thyroid. (Are you able to take T3 tablets without any problems?) Just because one so-called specialist said you were 'too complicated' doesn't mean they'd all take that approach. I had an endo say that about me: he wouldn't take me on as a patient because he'd 'studied' my dossier and my case was 'too complicated'. It wasn't complicated at all, at that point - although to be honest, of course, I have no idea what other doctors had written in that 'dossier'! But, looking at the man, and listening to him, I translated that as 'I just can't be a****d'! And the gastro I saw in that same hospital was the nicest, most competant doctor I've ever seen. So, we shouldn't just stick with one opinion from on fallible human being.
Anyway, as I said before, if I were you, I would carefully try and add in some T4, but no way would I go back to T4 mono-therapy. Pretty sure your body wouldn't take very kindly to it at all.
And you obviously absorb them, so all is not lost.
I usually take 62.5 mcg of Tiromel and my most recent blood work showed a FT4 of 5.76 (0.27-4.2)
Your FT4 is obviously over the top of the range. But that doesn't automatically mean you're over-dosed. There are no tests to know how much you absorb at a cellular level, except the way you feel. So, how do you feel on this dose?
And it's not a particularly high dose for someone on T3 mono-therapy. I take 75 mcg. Ranges are only rough guides to back-up symptoms. So, if you feel well on this dose - apart from your other problems - I wouldn't change a thing! I would not got back on to T4 just to please a bunch of doctors that are incapable of thinking outside the box. You should only do it if you, in your gut, feel it's the right thing to do. Trust your instincts. Mine would be to tell those doctors to go take a hike! There's some lovely countryside in Belgium.
I love Belgium! Wish I lived there. Not really sure why I don't! lol But, too late now, I'm too old to move.
Yes, I expect there are a lot of similarities between people's stories. Most on here had a hard time getting diagnosed and suffered needlessly at the hands of the so-called 'experts'. May they all... go to a very hot place and decompose there.
The range looks like a TSH range, yes - well spotted! But her TSH cannot possibly be 5.76. Hmmm... Soloslim can you tell us exactly what your blood test results are for FT4, FT3 and TSH?
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