Does hypothyroidism cause all of this?

I recently had a blood test done because I kept getting sick, and basically just felt ill constantly. I suspect I have had something since childhood, but I learned to live with it. My blood test showed a slightly raised TSH - 6,4. My doctor has put me on eltroxin and I have been taking it for about 2 months now. I feel a hundred times worse after bein on medication, but my TSH has dropped to 4,8 so it makes no sense to me. Furthermore it seems that my doctor doesn't see a connection with the getting sick all of the time. Lately I've been experiencing intense pain in different parts of my body. The pain will stay in one spot and then move on to a different one. It has gotten so bad that I have a hard time sleeping at night. I also have sore muscles, especially in my legs. I am still tired, have brain fog and stomach aches. These aren't symptoms of aging, since I'm 19, but is sure does feel like my body is shutting down.

It worries me that I feel this sick with an almost normal TSH, and I'm beginning to have difficulties with school and sociaising. Has anyone with a thyroid issue experienced something similar? Might I have another illness? I just want to get better

9 Replies

  • You may have a 'normal' TSH but that is only for people who don't have symptoms of a thyroid gland problem. For someone on thyroid hormones the aim should be a TSH around 1 or lower.

    If you are in the UK email

    and ask for a copy of the Pulse online article by Dr Toft. read question 6 and you will be surprised, I think. You will just have learned a very Important fact.

    You have only been on your dose for 2 months and normally we have a blood test and increase every six weeks until we feel much better. It is a slow process and it has probably taken years to get finally diagnosed.

    We have to read and learn in order to recover our health ourselves, hopefully with the help of a GP.

    Make a an appointment, as early as possible, to have a blood test, and leave 24 hours between taking levo and the test. Take levo afterwards.

    Ask GP to also test B12, Vit D, iron, ferritin and folate, we are usually deficient.

    Take levo first thing with one glass of water and don't eat for at least 1 hour as food can interfere with the uptake. Take supplements/medication 4 hours apart.

    You will begin to feel much better when your levo is increased.

    The symptoms you are having at present are clinical symptoms of hypo, pain etc. Your whole metabolism is affected and each and every receptor cells needs T3 in them for you to feel well. T4 should convert to sufficient T3. Your doctor is wrong about them not being connected.

  • But your TSH isn't 'normal'. The TSH of a person with no thyroid problems is around 0.8 - 1.25. The so-called 'norms' are a nonsense, but doctors don't understand that.

    Did they only do the TSH? You really need to have your FT4 and FT3 tested, too. I'm willing to bet that your FT3 is pretty low, and that is why you are having so many symptoms - because symptoms they are.

    Anything and everything can be a symptom of low thyroid, there is no fixed list that you have to adhere to. Thyroid hormone is needed by every cell in the body to function properly, so if you don't have enough - or too much - all sorts of things can go wrong. don't ever let your doctor tell you that a sympotm is 'nothing to do with your thyroid', as they so love to do, because he can't prove it. Ask for the proof and they soon shut up.

    You don't say how much Eltroxin you are on, but you should have been tested after 6 weeks - as Shaws says - and your dose increased. A starting dose is very, very rarely a sufficient dose, and you have to increase slowly - by 25 mcg at a time - until all your symptoms have gone. Then, you can say you are on a sufficient dose, not before.

    It's early days, don't worry. You just might have to be firm with your doctor about treating you correctly. And to be able to do that you need to learn as much as you possibly can about your disease by reading and asking questions.

    Hugs, Grey

  • Unfortunately I live in Denmark, where it is quite unusual, as far as I know, to test t3 or anything other than TSH when you have a thyroid problem, and there isn't a lot of help to find. I'm on 50 mg, my dose has not been increased even though I feel unwell. I am going to have my blood tested every 6 weeks from now on though, I think they wanted to leave extra time for the medication to work or something, I'm not really sure.

    Do you know if it is almost certainly an autoimmune disease or if it is just something else? I figure some of my symptoms might come from that (if I have it)

    Thanks for the reply!

    - Kristine

  • k1162, Eltroxin isn't 'medication' in the accepted sense of the term, it is Thyroid Hormone Replacement - replacing the hormone that your body can no-longer make by itself. It doesn't add anything extra to your body in the way medication does.

    OK, so they think that they can regulate thyroid hormones by the TSH in Denmark, do they? Well, I'm afraid, they are quite wrong. That isn't possible, and trying to do so leaves a lot of people sick. Quite what you can do about it, I don't know, apart from self-treating.

    You don't say what range they're using for the TSH, but as i said before, yours is too high by any standard. Someone on thyroid hormone replacement should have a TSH Under one. A dose of 50 mcg is just too low.

    To know what type of hypothyroidism you have, there are some blood tests. Iodine can be tested in the blood or the urine, to know if you are iodine deficient (which would make you hypo). Or, there are antibody blood tests to tell if you have autoimmune (Hashimoto's disease). A lot of people have that, but not everybody. Or it could be a pituitary problem, for which there are tests - but that doesn't seem likely with a high TSH. Or it could just be nutritional deficiencies such as low iron. You would need to test vit D, vit B12, folate, iron and ferritin. However, if they are unwilling to do any other tests, there is no way of knowing.

    This is all wrong, of course. It's a dreadful situation. Can you not get more help from the private sector? I really don't know anything about the system in Denmark, so it's difficult to advise you. Can you get private tests and take over control of your own health, like so many of us do, me include?

  • I was tested for all of the vitamin deficiencies including iodine the first time I got my tsh tested and nothing was wrong there. I mean it is possible to do private tests, but those are pretty expensive, especially if I have to do them regularly! I also don't think they would be able to prescribe medication, so I would still have to fight with a doctor about that. I have also heard of people who go abroad or treat it hollistically. I might have to figure something out if nothing improves

  • Well, I think private tests are expensive everywhere. Which is why some of us have to learn to dose by symptoms.

    When you say there was nothing wrong with your vitamin deficiencies, do you mean that they were optimal? Or just in range? Would be helpful if you gave us the results, just in case there's something your doctor missed (which they usually do!).

    When you say 'treat hollistically', what do you mean? To me that means taking into consideration all the things that might be 'off' and treating the body as a whole including vitamin, mineral and hormonal deficiencies, which is what I've been talking about. If you think there is some magical cure for hypo, then I'm afraid you're going to be disappointed. There is just correcting deficiencies and lowering antibodies if you have them, and eating correctly.

    If your TSH is still 4.8 on 50 mcg for two months, I really don't think things are going to just 'improve' by themselves. I think you've got to learn as much as you possibly can about your disease and take responsibility for your own health.

  • My son had similar problems, always with "normal" thyroid blood tests.

    Eventually I discovered that he had thyroid hormone resistance. This is genetic so if there are others in the family with thyroid problems or ME/CFS/Fibromyalgia this could be the cause.

  • I had never heard of that before. How did you figure it out? Had he just been on medication so long and not gotten any better that they conscidered it as a cause?

  • My son has been unwell since he was a small child. Initially we noticed a lack of energy. Over several years his health became worse, with constant pain and tiredness. He did not have a diagnosis, but Fibromyalgia was often mentioned. His thyroid blood tests were in the higher part of the normal range, so he was not even border-line hypothyroid.

    In that situation we had no other option than to purchase medication from an overseas pharmacy, without prescription and self-medicate. Self medication may seem dangerous, but not doing anything in this situation can be more dangerous. He tried natural thyroid but with no benefit and then tried T3. It was only with very high daily doses of T3 that he improved and now has good health.

    The only explanation for the improvement in his health and his ability to tolerate the very high dose of T3, without any symptoms of hyperthyroid (or signs of thyrotoxicosis), is that he has Reduced Sensitivity to Thyroid Hormone.

    I have complied a document on the condition and if you would like a copy send me a personal message with your email address and I will send it to you.

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