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Thyroid levels never stabilised

Posted , 4 users are following.

Kittylala
Kittylala

Hello everyone,

I had a thyroidectomy seven years ago and my TSH levels have never stabilised.  Here in France, the levels should be between 0 and 4 ideally, 1.5 - 2.5. 

Since my operation, my levels have never stabilised and they have been as high as 32 and as low as 0.003 (virtually non-existent.  I was on a high level of Thyroxine but it stopped working so I have now been on Euthyral for a couple of years but my levels still fluctuate and I can be either hyper or hypo.  As I am sure you all now, this means that I feel unwell and exhausted most of the time.

Has anybody else ever had this problem?  What other tests have people had done to establish if there is a cause?  Adrenal? Pituatary?   What other medication do you take?  I have never been offered anything other than Thyroxine which no longer works and Euthyral which doesn't seem to be working very well either.

Thank you for any information you can give me.

2 likes, 4 replies

4 Replies

  • linda187
    linda187 Kittylala

    Posted

    The only time I have seen this problem is with people who have Hashimoto's.  Perhaps removing the thyroid did not get rid of the antibodies.  I would check your antibody levels of anti-TPO and TGAb.  If you are positive for Hashimoto's, there was one lady who posted to the Board that she finally got control of her levels by using the supplement Regular l-Carnitine at a dose of 3,000 to 4,000 mg per day along with vitamin D. 
  • shellyC19
    shellyC19 Kittylala

    Posted

    Hello Kittylalal:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's and still have my thyroid gland.

    Levothyroxine/Synthroid are T4 preparations and your thyroid would convert it and since you do not have a thyroid any more it would be difficult to get it to work. It can be converted & absorbed by the liver and intestines and other organs. 

    There are natural thyroid meds, that are made from a pig's gland and are more like a humans gland.  Some are Thyroid S, Armour Thyroid, Thyroid  W.  There are a few others also.  These hormones are more natural to ours and contain all 4 thyroid hormones T1 to T4.  Please ask your doctor as these meds are safe and have been around a very long time, and can be obtained online if needed.

    Levo/Synthroid only contain T4.  We need T3 and T4.  Now there also is a pure T3 called Liothyronine or Cytomel (brand name).  I am on that one as I do not convert T4 in my thyroid well into useable T3.

    T3 is the useable hormone for the body and provides us with energy, and helps with all other organs.

    Also please have your ferritin levels checked and  potassium, calcium, sodium, magnesium levels checked as well.  ViT D and B-12 also.  Many thyroid patients are low in the above  and that can create problems in the body.

    With all thyroid meds, they need to be taken on an empty stomach no food!  Wait at least 1 hour before eating as food blocks the med from absorbing.

    Any questions, just ask.

    Shelly

     

    • Kittylala
      Kittylala shellyC19

      Posted

      Thank you Shelly - that is all very useful information and gives me something to go on.  I actually have just had a full blood test and should get the results early next week and I think that most of the things you mention will be on the results apart from perhaps the vitamins. When I get the results back, I shall go to see the endocrinologist and talk about options with her and other things that could be checked.

      I am relieved to know that there might be an answer and that I don't have to go on feeling so rotten the whole time - Thank you again.

       

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