NDT Trial symptoms- advice needed

Hi all,

I have just started a trial of NDT even though my TSH and T4 are euthyroid. TSH is 2.3 (0.27- 4.2) and T4 is 16.1 (12.3- 20.2) , but I have got high peroxidase antibodies and a nodular goitre. I am only taking a tiny amount of NDT- a quarter of a grain, and my heart seems to be beating quite fast and I get hot and sweaty every now and then. I also feel slightly dizzy at times and get a bit breathless. Then sometimes I get cold extremities (fingers, feet and nose) while feeling hot at the same time! Does this mean I am actually going hyper and should probably stop taking the tablets? I don't want to do any permanent damage.

18 Replies

  • You cannot know if you are 'going hyper' (over-medicated) without seeing your FT3. But I doubt a quarter grain of NDT would make you over-medicated with a TSH of 2.3 - which indicates that your gland is struggling.

    Over-dosing temporarily on NDT will not do any permanent damage of any kind. But you should get your FT3 tested as soon as possible.

  • Thanks for the advice Greygoose. I will give it a couple more weeks and see how I feel then, but guess there will be no point in me continuing to take it anyway if I'm still getting these symptoms.

  • Well, that's not strictly true. Starting on a low dose of 1/4 grain is good. With hormones you have to start low and increase slowly. So, if your symptoms don't disappear on 1/4 - which I don't think they're likely to - it would probably just mean that you need an increase in dose, not that you should abandon it altogether. But, again, you need to see your FT3.

  • The thing is, I'm taking the NDT to relieve symptoms, but the NDT is creating new symptoms/side effects, so if I do increase the dose it will probably be likely that these new symptoms will just get worse...but I will see how it goes and I will get my T3 tested privately as my endo says the T3 test is insignificant.

  • Yes, that's the best thing to do.

  • Yes, I know. That's why people get them done privately.

  • That's not strictly true. I think it depends on the doctor- mine was happy to test FT3 when I asked.

  • Just out of curiosity: when can you tell a thyroid gland is struggling? As soon as the TSH is above 2, or even lower? In Belgium, they recommend that you try to stabilise your TSH between 1 and 1.5 when optimally treated with (T4) drugs...with some doctors recommending you try to get it down to 0.5 in case of Hashimoto...

  • With Hashi's, you need a suppressed TSH. 0.5 is too high. Besides, some people would still feel ill with a TSH of 1.0, and need it suppressed to feel well. The TSH is totally irrelevant in that case, because you don't need it. And dosing to keep the TSH in a certain range - whatever that range may be - is a good way to keep the patient sick. It's the FT3 that is important.

    Having said that, a truly euthyroid TSH shouldn't be as high as 2. If your pituitary is making that much TSH to flog your gland into action, then your gland is struggling.

  • I wish more doctors agreed with that...as I have never felt well with a so called normal TSH (and yes, Hashi's)...most doctors freak out at the sight of my TSH (<0.001)...but posts like yours give me the strength to disagree with them:-)

  • Yes, I know, most doctors freak out at mine, too! But I have had two that didn't Dalle, and the head endo at the American hospital in Paris. Dalle looked at the TSH and said 'ça, on s'en fou'. lol

  • T3 is the active thyroid which controls the metabolism and therefore the symptoms. I think from a previous post that your Free T3 is close to the middle of the normal range so you should not be having severe hypothyroid symptoms.

    Your Free T3 level with your symptoms and your mother's thyroid problems could point to Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It is genetic and requires very high T3 levels in the body to overcome the resistance.

    If there are other family members with fibromyalgia, CFS, ME, Coeliac Disease, MS, Heart Disease, thyroid or depression this would further support this.

  • No, I do not have severe hypothyroid symptoms and still manage to get on with daily life, but I always feel terribly fatigued and get palpitations and head fog the day after exercise.

    I thought that taking the NDT may replace the depleted T3 (if that's what's causing my symptoms), but at the moment the NDT is just giving me hyper symptoms by the looks of things. I have also tried T3 on its own which more or less did the same thing- breathlessness and palpitations.

    So are you saying that impaired sensitivity to thyroid hormone is treated with high levels of T3?

  • I was guessing that your symptoms were severe based on the fact that you ave been trying to get a diagnosis/treatment since 2010, and have seen 4 endocrinologists. Your terribly fatigued and palpitations and head fog the day after exercise are all thyroid related.

    Your thyroid blood test did not show that your T3 was depleted and it is sometimes difficult to distinguish between some hypo and hyper symptoms.

    A a quarter of a grain of NDT is a very small amount and is not likely to cause hyper symptoms unless your T3 was already very high. A small dose of thyroid hormones can sometimes suppress some of the body's own production of thyroid hormones and can make you feel worse for that reason.

    Yes, impaired sensitivity to thyroid hormone is treated with high levels of T3 giving a Free T3 at the top or above the top of the range.

  • I think my problem is severe to me as it has caused a few life-changing issues, but compared to other people on this site I wouldn't class myself as severe.. ie I do struggle to get out of bed in the morning but some people REALLY struggle and can't even go to work. My problem is mainly causing vaginal dryness/low libido which really gets me down because I am only 36, but no one else seems to suffer with these symptoms on this site (unless they are menopausal). So I am wondering if my problem is actually thyroid-related or is it something else!

    I guess all I can do is get my bloods tested and then increase to half a grain and see what happens I suppose.

  • I suffer with it and am not menopausal - 34! Good luck

  • Those symptoms you refer to, vaginal dryness and low labido, are more likely related to sex hormones. Low sex hormones can cause fatigue as well. It would be a good idea to have those tested too. I was diagnosed menopausal before my fortieth birthday, so don't let Dr.'s brush you off as too young. I have started bio identical hormone replacement and feel a lot better. Sex hormones, thyroid and adrenal all tend to go hand in hand with one another. I would certainly check into other things including nutritional deficiencies. I am not opposed to T3, as I do take it myself. However, taking T3 when it is not needed can be dangerous. I am not trying to stress you, 1/4 of a grain is low and unlikely to cause major problems. I think you should keep this in mind. I've gone hyper from too much T3, and would prefer hypo symptoms over hyper any day of the week.

  • I have had my sex hormones tested many times and they are always good and the docs say I'm definitely not menopausal. My last ones were on day 21 of my cycle..my progesterone was 53 (1.6- 80), my oestrogen was 752.6 (0-2570) and testosterone was 1.5 (0.2-2.9). My fsh was 2.1 and my LH was 4.4. The specialist is baffled because I have lots of symptoms of being hypo, yet my thyroid levels are all actually pretty good and mid-range, but I also have high prolactin of 1032 which is often seen in hypo patients! I also have nodules and mildly raised antibodies. I've now tried levo, t3 on its own and NDT and all have just made me feel hyper! I'm wondering if I'm actually hyper anyway and that my tsh of 2.3 is hyper for my body as everyone feels best at different levels. I have also been supplementing all important vitamins for about a year or more and my vitamin levels are all great. I've decided to stop the NDT after a week because my heart was racing every morning and I was getting very breathless and feeling nervous, so I think I was definitely going hyper and I didn't like the feeling. I feel as though I've now come to the end of the road as I've been tested for everything, seen tons of various specialists and no one has got any answers... I think I now have to just accept I've got to live like this and maybe get counselling instead to learn how to accept it!

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