Hi everyone! I am now 99% sure that I have Sick Euthyroid (Low T3) Syndrome. I have eating disorder history including long calorie restriction periods, and I have chronic cytitis that no anh doctor can heal. I am 25 now, and my eating disorder was between my ages 12-18. I am more than healthier since then. And we keep chronic cystitis under control with a light medication I use every once in a while for last 2 years. I always tought I have got over all these, but obviously they ended up decreasing my T3 (and took my FT4,FT3 and T4 to the low edge in their ranges).
I read we shouldn't use thyroid medication for Sick Euthyroid including T4, T3 or Armour. Many sources claim that the only way to get higher T3 is to heal underlying health problems.
Considering my underlying reasons are healed, or uncurable for good; what would you recommend me? I guess it is a discussion topic, everyone thinks differently.
Thank you!
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Cofy
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Euthyroid sick syndrome (ESS) is now called non-thyroidal illness (NTI). The guidance is as you say to solve the underlying illness. This is all well and good but if this cannont be done, or the illness not identified, it seems daft to let low hormone levels continue indefinitely. So, it may be quite a battle but I would push for thyroid hormone to raise your fT3 and fT4 to their mid-interval levels. TSH is usuallyinappropriately low in NTI with TSH isoforms that have substantially reduced bioactivity. So, your doctors should pay more attention to your symptoms, fT3 and fT4 rather than TSH.
Central hypo is a failing pituitary or hypothalamus. NTI is when a patient has abnormal thyroid blood test results due to a concurrent illness.
An example is during a heart attack, often free T3 is low. In the case of a heart attack the approach is to fix the heart condition and the thyroid hormone levels go back to normal. Another example is depression which can lower thyroid hormone levels via a low TSH. My view is that if the depression cannot resolve in the near term (month or two?) then you should concurrently treat the low hormones (which might even be causing the depression).
Hmmm... Not very conclusive, is it. It's all rather arbitary. And, if they don't test the pituitary - which most of them don't - then they're just guessing that it's NTI and not Central hypo. I think that a 'diagnosis' of NTI should be regarded with a huge, dose of salt! Given the apparent reluctance on the part of doctors, even endos, to diagnose and treat thyroid, sounds to me like just one more excuse.
Cofy , based on what evidence did they 'diagnose' your ESS/NTI?
Dear Greygoose, thank you very much for your interest. Such an interesting discussion that you brought here. They didn't diagnosed me at all with anything. Here are my latest results:
FT3 3.60 (range 3.10-6.80)
FT4 13.90 (range 12.00-22.00)
T3 0.75 (range 0.80-2.00)
T4 6.02 (range 5.10-14.10
TSH 1.30 (range 0.30-4.00)
My RT3 from 3 months ago was 18 (range is 10-24 but I have read that a number above 15 is not good). They don't look up to RT3 levels here in my country, they send the results to the US if we pay a lot, and we can only get the result after a month !
I have many of hypo symptoms. But 4 endos I tried my chance for last 1 year said my thyroid levels were good. When I tell them what I have read, what we discuss here and they shouldn't just rely on my tsh, they get agressive(!). I am done with them, I am sick of them. I have hypoglycemia due to insulin resistance (diagnosed 3 months ago), one of them told my symptoms are related to it; but metformin and regular proper exercise I have been doing for 4 years don't help at all. My thyroid hormone levels are always low normal, below the optimal range indicated on many researches and websites (for last 1 year). This time my T3 is even below the range. I have been, and still am abstentious about self medicating. But I see there is no any other choice.
I asked docs to check my pituitary function as it was advised to me before, but they said it is not necessary for me. So I had to eliminate Central Hypo. I am just a patient, I read a lot, but English is not even my main language - and the best research I do don't seem enough. It takes a lot of time from me. I feel hopeless. So scared to start a wrong medication, so scaredof wring doses, I already gained weight, lost hairy, started having irregular periods, and am feeling very moody. I am scared of making them worse, as how one of the endo made me scared of... I don't know how to check my pituitary, I just checked my growth hormone; it came out normal (normal for my age). My TPO was <5 3 months ago. So I had to eliminate central hypo and choose the closest option (cınsidering my health history); NTI-Euthyroid Sick Syndrome. The pathway I have followed sounds tragic and funny at the same time, right?
Difficult to know what to make of your rT3, because it obviously isn't due to high levels of unconverted T4. However, it isn't over-range, so I wouldn't worry too much about that at this time.
On the other hand, your FT3 is very low. I really don't know how an endo could think it good! Seems to me, everything points to Central Hypo. And, I'm very impressed by your list of pituitary hormones! I've never found one as complete as that. But, is it possible for you to test them all, without the intervention of an endo? Is it faisable?
And, in the event of them coming back in normal ranges, would that mean you are well? Well, given your level of FT3, I would say not. I don't see how you can be well with such a low FT3. Besides, I'm sure I read somewhere that it is possible to have a pituitary problem where just the TSH is concerned - or did I imagine that? Or maybe that would mean the problem stems from the hypothalamus. But, I have no idea how you check on the hypothalamus! Endos seem to ignore the hypothalamus, anyway.
So, what about self-treating? What exactly is it that scares you? Many, many of us do it. And, you have the advantage of living in Turkey, where I believe you can just get T4 and T3 without a prescription, yes? What could be easier? The rule is : start low, and increase slowly. So, with T4, you would start with 50 mcg, and increase by 25 mcg every six weeks. Nothing dreadful is going to happen to you. And, if you find you don't like it, it doesn't suit you, you can just taper down and stop taking it. Surely that has to be better than suffering the symptoms of low thyroid, no?
Dear Greygoose, you are helping to someone who is so desperately sitting hundreds of kilometers away from you. You must be an angel! Thank you very much.
I can try to get those tests done, but it would cost me a lot. You are right, I can get them without prescription here Could I start medication without those tests and see how it goes? I said I am scared of self medicating because I am scared of gaining more weight or losing a lot of weight in a short time, or losing more hair, or having more irregular menstrual cycle. I understand you meant to say these don't happen that drastically. And I guess you advise me to take T3 and T4 combination. I read that there is a ratio when using those together. I see you tell me to start T4 with 50 mcg, what about T3?
I have a father with Hashimoto. I remember he takes his medicine 1 hour before breakfasts. Does same thing apply to me?
I don't think anything is going to happen rapidly if you remember to start low and increase slowly.
If I were you, I would start on just T4, and see how it goes. You might not need T3. Try bringing your FT4 up, first, and see how you convert. You can always add T3 in later, if you need it.
Yes, you do need to take levo on an empty stomach, one hour before eating or drinking anything other than water. Do you take any other medications or supplements?
You could, indeed, start taking levo without doing the other tests, because even if the other hormones are low, it won't affect the thyroid treatment. It's just that if the other hormones are low, you will still have problems, even with the levo. You'll just have to see how it goes.
You say your Growth Hormone is in the right range for your age. Which is good. So, perhaps you could test the others, one at a time, as and when you can afford them. Rather than spending a fortune on testing them all at the same time?
I will follow everything you have advised me. I can't thank you enough!
Two more short questions, I promise these will be the last. I know that sometimes body converts T4 to RT3, instead of T3. This leads worse hypo symptoms. So I believe after startig to take T4, I should check my thyroid hormones including RT3. But as I said before there is no lab looks up to RT3 here (as far as I know). Can you think of any other lab test or any other way that can help me to keep RT3 under control? Or if my T3 doesn't increase, would that simply mean my T4 is converting to RT3?
And my second question is, will I keep taking T4 for the rest of my life? Or will I stop once my hormones reach to their optimal levels?
I am so sorry if I am asking for too much information.
Please don't apologise for asking questions. If you don't ask, you don't learn.
RT3 is not something to worry about, nor even something that needs to be tested, under ordinary circumstances. RT3 is usually the result of poor conversion, not the cause. It's just natures way of dealing with excess unconverted T4, so that it isn't wasted. After a few hours, rT3 is converted to T2. And, in no way does it worsen hypo symptoms.
There are other reasons for rT3, other than excess unconverted T4, of course. Such as starvation diets, serious illness, low cortisol or iron, etc. But it is still just a symptom, not a disease.
It's pretty certain that you will have to take thyroid hormone replacement for the rest of your life. Because it's highly unlikely that you will ever find the cause of your hypo and/or be able to rectify it. Your gland will continue to malfunction - and could even get worse - so if you stopped the hormone once your levels were optimal, they would quickly decrease until you became hypo again.
I feel like I am well informed to start the medication now, thanks to you. I bought the pill today (called Levotiron here). I will take at 5 am to start with.
Thank you very much for all your efforts to help me Greygoose!
Oh meanwhile, I forgot replying your question. I use ferritin, vit D, vit B12 and onega 3 supplements for last 2 weeks, every night. They come out low all the time when we test it, so I use them every once in a while. I will stop takinh ferritin 2 weeks later, and I will stop taking vit D in 2-3 days. I will keep taking B12 after this Solgar bottle finishes, which should take a month. And finally I take Metformin (850 mg x 2 a day) and Chromium Picolinate (200 mcg x 2 a day) for my Hypoglycemia due to İnsulin Resistance.
Hi, just wanted to mention, my Mom and I have both cleared up urinary infection by drinking Kefir - coconut water Kefir in my case, due to being dairy intolerant.
Now after going to the loo, neither of us have dark, smelly urine.
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Could I start medication without those tests and see how it goes? I said I am scared of self medicating because I am scared of gaining more weight or losing a lot of weight in a short time, or losing more hair, or having more irregular menstrual cycle. I understand you meant to say these don't happen that drastically. And I guess you advise me to take T3 and T4 combination. I read that there is a ratio when using those together. I see you tell me to start T4 with 50 mcg, what about T3? 
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