What should I do now?

Hello, please can someone help me with these results.

My private Endo told me to have a test to monitor my self-medicating with T3. I have been taking 1 x 25mg of T3 for about 5 months, and have decreased my Levo to 75mg. I am having some liver problems so couldn't convert very well, so my Endo said to take the liver out the equation and take my T3 directly.

Now I have just got these results and I am so very confused. I don't think I have ever felt this ill, I am still putting on weight, so tired I sleep most days & I can't drive anymore, constipated, I cry most of the time, depression & suicidal thoughts, and so many panic attacks, never sleeping at night plus other things I can't remember as I struggle to recall anything at the moment! I am only 32!!

I am just so worried that I will never lose weight or get better, I thought these results might help me in adding more T3, but now I just don't know what to do.

Thyroid Monitoring rT3

- 10 June 2017

ENDOCRINOLOGY

Thyroid Function

THYROID STIMULATING HORMONE * 0.012 mIU/L (0.27 - 4.20)

FREE THYROXINE 11.44 pmol/L (12.00 - 22.00)

FREE T3 8.48 pmol/L (3.10 - 6.80)

REVERSE T3 22 ng/dL (10.00 - 24.00)

REVERSE T3 RATIO 25.09 (15.01 - 75.00)

Any help will always be greatly received, this forum keeps me going.

45 Replies

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  • Others will be asking, how long was it between your last doses of T4 and T3 and the blood being drawn for that test?

  • This recent set of results was after 12 hrs for my T3 and then 24hrs for my Levo, as I was advised on here.

  • Hi - maybe consider a bit of patience for a start? Please remember that everyone here gives their own time to try to help others and don't always sit watching the screen. Since you appear to have posted the same question 1 hr ago maybe you could delete one to save confusion?

    Anyway, as to your question, I have looked back through your posts and see that a test in April 17 showed

    TSH 0.012 (0.27-4.2), FT4 11.45 (12 - 22), FT3 4.35 (3.1-6.8)

    At this point you said you were also on 75 T4, 25 T3.

    On the face of it, you are currently over-medicated, yet your previous results show under-medication. Were both tests taken at the same time, fasting and the same interval after taking your meds? How long before the the latest test had you taken your T3? If they were at the same interval then I would struggle to understand what is actually going on as TSH and FT4, and indeed RT3, are virtually identical in both.

    On previous posts you were asked about nutrient values for vit D, vit B12, folate and ferritin - did you have these tested at any point? If yes then please quote them as deficiencies in these can cause symptoms of their own and can also exacerbate thyroid issues.

    Gillian

  • So about re-posting, I couldn't see my original post on the list when I looked through, so wasn't sure I had done it right. I didn't mean to upset anyone, I do appreciate everybody's time and I know there are more important people with questions, but I currently don't have a GP and my endo is private, which I have to save up for, for months, (as well as the private blood tests) and I don't know where to turn. I am sorry for re-posting, I will check better in the future.

    The results I had on the 17th of April, were wrong, I left far too much time in between taking medication and having my blood test. This recent set of results was after 12 hrs for my T3 and then 24hrs for my Levo, as I was advised on here after posting those results.

    Thank you very much for your reply, I thought it looked like I was over-medicated, but since adding my T3 I feel no different than before, and all my symptoms still suggest under-activate, so I have no idea what to do now.

  • Well for a start, if you are only seeing the endo for thyroid issues, then I would personally be inclined to stop and spend the money on a comprehensive private test instead - Blue Horizon or Medichecks - to include TSH, FT4, FT3, folate, ferritin, vit D, vit B12, TpoAb and TgAb. These generally come in around £100-120 but watch out for special offers. Then spend the rest on some decent supplements for any deficiencies that show up. Many of your symptoms could be caused by - or at very least contributed to - by some of these.

    For now, you are over-medicated and that will cause as many symptoms and make you feel as bad as being under. So you need to cut your overall dose. Since your RT3 is close to top of range and this is potentially caused by unconverted T4, it may be best to cut T4, though with the caution as to why your body produces RT3. This is used as a mechanism to slow down your body in times of illness to make you rest and give time to heal. Hence yours may be relatively high because of your other issues rather than the hypo. I don't have much knowledge on how to handle that or clearing out RT3 -which blocks receptors and stops T3 working - but that may also be contributing to your ongoing issues. If you cut your dose till FT3 is within range and close to top, identify and improve any deficiencies and you are still having issues, then you may need to look into this. I believe Stop the Thyroid Madness has sections on this.

    Good luck

    Gillian

  • Also if anti-bodies are positive, a strict gluten free diet helps many people.

  • So is it best to take T3 only? Why would I not have any hyper symptoms? Could I just not be absorbing anything? How do you know if your not absorbing?

    I have coeliac disease so the gluten isn't a problem, and I am actually still anorexic (have been most of my life, but now I am overweight due to my thyroid problems), so barely eating anything & weight still goes up? I just don't understand anything anymore. Sorry, thank you very much for your response. :)

  • Well a lot of the symptoms are common between hypo and hyper so it is not as distinctive as you might think. But since you already have coeliac - an auto-immune - you are much more likely to have Hashimotos auto-immune hypothyroid which causes 90% of all hypo. This is associated with low stomach acid and absorption problems. Gluten is strongly associated with this, but some of us (myself included) also have to cut out dairy as the structure of its protein casein is similar to that in gluten.

    Though it may seem counter-intuitive, not eating enough when hypo can cause weight gain as the body again tries to slow down the metabolism to protect itself from having to do activities that it doesn't have enough fuel for - and it does this by producing RT3.

    But if you have enough FT3 in your blood, as you do, but continuing to feel hypo, it could be that it is the RT3 causing your problems, This could be blocking your T3 receptors and stopping your FT3 being used in your cells. This problem could be made worse by deficiencies so I would start there by testing those.

    T3 on its own can be very difficult to take if you have deficiencies.

    Gillian

  • Thank you, I am allergic to milk, so the dairy is out for me anyway. I have had vitamin tests done in the past and I know my Vit D, ferritin and folate are all in the normal ranges (I have no idea how, I don't take any supplements!) So I will save up to have the others tested.

    My cortisol level has always been high, or high of normal, so not sure whether that is a factor, but I really struggle to find any meds that help with that.

    Thanks again for your advice.

  • Hi - cortisol can be high because thyroid is low, the body tries to compensate for one by producing the other in the adrenals, but they then can become tired which causes even more problems. It usually evens out on its own when thyroid is treated.

    Vitamins/minerals - the ranges for these are quite wide but the levels required for thyroid health are actually quite high, not just within bottom end of range. For instance ferritin range is usually something like 15-150, optimum for thyroid is around 100-120, minimum 70. So you see how "in range" may still be inadequate. Numbers of 14-30 are very common with hypothyroid, for instance, and need to be addressed.

    You really should get all these tested so that they can be assessed and supplemented as required. Especially if you want to consider going T3 only, as it can be difficult to tolerate and get best effect from this if nutrients are deficient.

    Good luck

    Gillian

  • Thank you so much. I will look into this & getting them tested.

  • Do you have Hashi's?

  • Erm, I don't know, I'm not sure how would I know that?

  • You have to have your antibodies tested. Has your doctor ever done that?

  • No, I haven't had them tested. I got diagnosed with Thyroiditis and then under-active thyroid over 2 years ago, and then was put on Levo. As my symptoms just got worse (and continue to do so) I added the T3, mainly because of my high RT3 and my liver problems.

  • Autoimmune thyroiditis? It's the same thing. But, they can't diagnose that without do the antibody tests.

  • That was what they said at the hospital and then I went to a private endo and we worked on that. What test should I have had done? Will it explain these results or why I can't seem to get any better?

  • Well, it might explain some things. In any case if you know you have Hashi's, there are things you can do which might help you feel better, like adopting a gluten-free diet, and taking selenium.

    There are two types of antibody : TPO and Tg. But the NHS will only test the TPO.

  • Thank you :) I have coeliac disease so gluten is out anyways & I am very careful. I am alright to increase my T3 or not? Shall I decrease my T4 at the same time? I don't feel any different to before taking any T3 at the beginning of this year.

  • Your FT3 is already way over-range, and your FT4 under-range, so I don't think you want to increase T3, but I don't know about T4. Have you already tried T3 only?

  • No I haven't. I wasn't sure what to do, as my RT3 has always been high or very high. I thought that T3 was the best way of getting that down.

  • Yes, but T3 only. As long as there's T4, it can convert to rT3. If there's not T4, there's no rT3. When I was getting rid of my rT3 (which I thought I had, but no test) I cut out T4 completely. After 15 weeks I tried going back on NDT, but was ill again. So, I'm now on T3 only.

  • Thank you very, I know I have taken up far too much of your time, but could I just ask, if I wanted to go T3 only, how do I go about it? Thanks again

  • That's ok, don't worry about it. :)

    Well, if I were you, I would reduce the levo slowly, 25 mcg at a time - I'm not sure you should stop it all at once, but it's up to you. Don't increase your T3 at all until you've tested six weeks after stopping the levo, then see the level of your FT3.

    I see you've said elsewhere that you're allergic to milk. You haven't replaced it with soy milk, have you? Do you ingest any unfermented soy at all?

  • Okay thank you. When I increased my T3 up to 1 tablet, I did it by increasing by a quarter each fortnight (you advised me - thank you again!), do I do the same when decreasing? I also take it in the liquid form, so I will see how it goes!

    No, I don't actually like milk in any form! I used to eat some Quorn, but due to the advice on soya I now don't. I am literally just on steamed vegetables at the moment, but I have managed to find a soya, gluten, dairy free & vegan protein shake that I hope to try soon.

  • Wow! If it's soya, gluten and dairy free, what on earth is in it? lol Not much left, is there. Don't you eat things like dried beans, chick peas and lentils? They're full of protein and can be so good!

    Don't decrease the T3 now, concentrate on decreasing the levo, 25 mcg at a time. Then, when that's gone, test the FT3, and see if you still need to decrease.

  • Haha, I wondered that, but it is mainly pea protein in that actually :) Thank you, I will decrease my Levo, sorry should have made that clearer, should I decrease my Levo by 25 mcg each fortnight?

  • You could try that. See how you feel. If you start to feel bad, slow down. But, I don't think you will. :)

  • Sorry to bother you again, but do you know what 'pooling' is? I've been reading so things on the stop the thyroid madness website, but I don't really understand it, struggling to take any thing in at the moment! The heat isn't helping! Just wondering if you had heard of it & maybe know where is best to look. I didn't know if it was worth putting post on here, as I am not sure if it is relevant to my recent blood results.

    Thank you so, so much again.

  • I could be wrong, but I think 'pooling' is an STTM invention. You never really see it anywhere else, and nobody really seems to know what it means. But, I think it means that T3 is mounting up in your blood and not being absorbed by the cells, for whatever reason. But, I wouldn't stake my life on it. lol

  • If you haven't been tested for Hashimotos disease you should make it your first priority, there isn't just one kind of thyroidal illness. Once you know the answer to that question you can start to make more informed choices about your medication. When they first diagnosed did they mention auto-immune thyroiditis or just thyroiditis ? One is an illness, the other is fairly meaningless ..

  • Thank you. The consultant just said thyroiditis.

  • That is what doctors call it - it means you have auto-immune thyroiditis, also known as Hashimotos or Hashis after the Japanese doctor who identified it I believe.

  • NHS choices list 7 or 8 different versions of "thyroiditis" which is basically a term for inflammation of the thyroid gland.

    The most commonly reported version (in the UK) is Hashimoto's which is your autoimmune system attacking the thyroid gland.

    Its also the only form that the endo's seem to have any idea how to treat.

    Your symptoms roughly seem to correspond , but that's not a way to judge , a blood test is necessary.

    The alternative is Euthyroid sick syndrome , which is where the thyroid goes out of balance due to an external factor (your liver may be a factor here) , in which case you may be treating the wrong problem.

    Endo's in the UK just do blood tests , blood tests are not the be all and end all of treating thyroid problems.

  • and don't take the Endo's word for it either , you need to see the blood test , my endo diagnosed me with auto-immune thyroidits with a blood test that showed no anti-bodies. When challenged he said "its the most common form, I just presumed ..."

  • Thank you! Is there a best place to get a private test done for this? :)

  • There are a couple of private testing companies recommended by Healthunlocked someone will be along with the details.

    However these are basic tests , your endo should do the antibody test as a matter of course as you're so ill.

    If I were you I'd ask your GP to do a choelesterol test as well , this is often a good indicator of thyroid problems.

  • Thank you :)

  • Private test information

    and be prepared to pressure your GP and Endo, they won't volunteer anything , its your health, stand up and demand.

    thyroiduk.org.uk/tuk/testin...

  • Thank you very much, you've all be so helpful & kind.

  • Your FreeT3 is quite high over the range. It's interesting that you're saying you've had zero benefits. It sounds like Levothyroxine plus T3 is no working for you. There are two other forms of thyroid replacement you can try: 1) T3 only, 2) NDT, natural dessicated thyroid, which is taken from animals rather than synthetic like the others.

    I was in a similar boat, synthetics had very little effect on my symptoms, even though I increased them until I was over range. I also didn't experience any symptoms of over medication, which would be the body being speeded up, too hot, restless, palpitations, diarrhea, etc.

    Eventually I self medicated with NDT, and it seems to absorb a lot better. But it's important to make sure your vitamins are all optimal first. If you're looking for the cheapest way to do this, and the tests have been done by your GP in the past, it might be better to request your complete record. That will cost about £50.

  • Thank you, that's good to know, I thought I was the only one!! My body temperature seems to fluctuate, when its cold I'm very cold and hot visa versa! I did try NDT in the past, but I am now thinking of trying T3 only, as that's what I have at home already and see how that works :)

    Thanks for your advice & reassurance!

  • Don''t want to over reply , but that cold feeling is a low basal body temp. The T3 should rectify that. However you're already over range for T3.

    That suggests that the effect of the T3 is being blocked. So , high rT3 may be your real problem.

    The way to drop your rT3 is to cut out the T4 BUT you should only take that option under strict supervision of your Endo.

  • If you're lucky enough to find an Endo who will support you this is a good option. But many people end up self medicating, as they only find Endos that know nothing!

    Even an Endo that seems to be doing well can revert at any moment, so it's important to double check everything yourself and get copies of all the test results.

  • I think that's the right thing to do. Give it a good long test of at least a couple of months. NDT is an option to keep in reserve in case T3-only doesn't work.

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