Newbie x

Hello and good morning x

Two and a half months ago I had a total Thyroidectomy, due to having treatment for Graves Disease for 5 years, but I kept relapsing. I really thought that this would solve all my health issues. I am currently on 125mg of levothyroxine, my levels are good, yet I am still feeling very tired and aching, especially aching legs and the last 2 weeks I have been waking up between 3 and 4 in the morning with an anxious, butterfly feeling in my stomach, no matter what time I go to bed. I am going to speak to my Thyroid nurse today, but hoping you could help too, as I'm am not feeling great.

Thank you

15 Replies

  • I would try to ask for a combination of Levothyroxine and Liothyronine (T3) as this might make you feel a lot better. Trouble is that many NHS doctors don't want to prescribe T3 due to cost.

  • Thank you for taking the time to answer x

  • What were your last thyroid test results? Have you had tests for levels of Vit D, Vit B12, Ferritin and Folate? All these need to be optimal if thyroid meds are to work properly.

    No good changing the type of thyroid meds you are on, until all the basics are sorted.

  • Thank you x This is all new to me and I don't really understand x all I am told is my levels are normal and where they should be x sounds like I need to ask what my levels are, for more than just thyroxine levels x I appreciate you taking time to answer x

  • Don't worry, we were all new to 'this' at one time 🙂

    Are you in the UK? You are entitled to copies of your test results.

  • Yes I am in the U.K x I think I need some one to explain the levels of the different things I am tested for x As I don't know what I should or shouldn't be x I shall speak to my Thyroid nurse ASAP x thanks again x

  • I thought vit levels would always be optimal if thyroid function was optimal.

  • If your Vit levels are not optimal, your thyroid meds won't work properly, so it would be difficult to have optimal thyroid function.

  • That is an interesting point because I used to be deficient in B12 and iron whilst on Thyroxine. I started supplementing with vit b12 and iron and also switched to NDT. My vitamin levels are fine now and I don't supplement with anything at the moment except for omega 3 oil. I also had a total thyroidectomy.

  • Hello Silver x

    I have finally got through to my Thyroid nurse and I haven't as yet been tested for Vit D, Vit B12, Ferritin or Folate. I am due for a blood test next week and he has told me to add these tests. Nor do I know my T3 free levels, but the results from my last test that I do know are TSH 1.37 and T4 free 17.2. It does seem that these are the only two results that they are interested in. As I am new to all this I don't know if this is right or not. Sorry for the essay x thank you x

  • When you get your results, start a new post (as this one will be lost in the ether as new ones are posted) with the ranges - numbers in brackets - and members will comment.

    Anything you don't understand don't hesitate to ask, there's usually someone around to explain 🙂

  • Thank you x

  • Hi Alison-Morey,

    Yes always ask for your results and the ranges they are in. Normally the results are read from a script and there are different levels of "normal" - To me, you daily dose, does seem low especially as you are no longer making natural thyroid, so the TSH level will be naturally suppressed. What GP's tend to go by is your TSH which is not accurate. You need to know what your free T4 and free T3 levels are. By asking for the ranges and levels, it keeps them on their toes. There are a lot of people here that know quite a lot about range levels etc, so might be able to advise. Perhaps show your results.

    As others have said, you may need to get your ferritin and folate levels checked. B12 deficiency, anaemia and vitamin D deficiency, can some times walk hand in hand with thyroid conditions and also have similar symptoms.

    My thyroid gland has never worked, I only have a partial one anyway, so have always had suppressed TSH levels and currently on 200 mcg of thyroxine (T4) and 20 mcg lithyronine (T3), due to being messed around (long story), I also have B12 deficiency, pernicious anaemia and vitamin D deficiency. However, saying that I am not currently anaemic (I was terribly anaemic for a very long time due to heavy periods) and after a recent bone density scan, I am at very low risk of any fractures etc. So the medication does work.

    Take care and keep posting!

  • i had a total back in 2012 last 2016 i had weightloss surgery because i gian so much weight yes it has help me ,,but still i get tired really fast ,,i guess still yet from the thyroid dease i got called graves ,,,

  • It would be a good idea if you started a new post, this one won't be seen by many.

    Include your last thyroid test results and any Vit/min tests you may have had done.

    Also post what thyroid meds and dosage you are on.

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