Desperate for help with Graves Disease

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I am so desperate for help. I've been sick for more than fifteen years now & have been searching to try & find out what its wrong with me so much so that I finally had a genetic Thyroid test done privately. It came back with various results most of which were ok but there were 3 red flags that came up as follows:- 

COMT - Very slow clearance of stress hormones & oestrogen. You may be at increased risk of thyroid dysfunction when under stress & due to poor elimination of oestrogen.

TNF-a -  The (A) result increases likelihoood of an over-reactive inflammatory immune response. This means you are at risk of chronic inflammatory & autoimmune conditions including Hashimoto's thyroiditis or Graves disease.

TRHR  -  The (A) result has been found to be more common in people with Graves disease & is linked to the presence of the thyroid stimulating hormone receptor antibodies (TRAb), associated with increased risk of developing GD.

I have many symptoms including: - Swollen neck, Jaw pain, heat intolerance, hand tremors, feeling of heart beating very fast,  constant peeing, sore gritty eyes with pain behind the eyes. I have also had, low Vit B, still have low Vit D, Stage 3 kidney disease, 

high plasma glucose & itching skin to name a few. My problem is that my blood tests come withing the ranges for thyroid most of the time. I have had gone over the T4 range a few times though, but my TSH has been 0.59 ti 1,2. This is why none of the medical professionals i've seen take the fact that I have these symptoms seriously.

I would also add that I have an older sister who has the disease. Please can someone out there help me I feel so deperately ill all the time & don't now who to turn to. Should I try to see an endocrinologist? I would be so grateful for any help you can give me.

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  • Posted

    You must have gone through so much, and obviously, you have so much staying power too! So that's some plus for you despite all the challenges.

    With these results I will see the Endo.

    Best of lucks, and do update us.

    E

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    • Posted

      Hi

      Thankyou so much for the reply. I've just been to the doctors with sudden hearing loss in my left ear. I showed him the gene test results but he said there is nothing they can do about these results. He is sending me to see someone about my hearing loss though.

      Hope you are ok.

      W

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  • Posted

    Why in earth have you not had blood tests done by your doctor ... to simply see if you have Graves’ disease ?

    It would show conclusively if you have  !

    And then you see an Endocrinologist  ... who will put you on a drug  which will regulate your thyroid hormone which in the case of Graves’ disease  makes you very overactive and extremely anxious  with your body working overtime .. including bowels and bladder,  heart and lungs !

    Tremors shaking etc is all part of the fun symptoms we expect to have too ..  oh dear I sympathise with you .. but it’s time to get empowered and start to get well again .

    Get your bloods tested .. soon then come back on and tell us the results .. then we’ll help you get better .. I’ve been in remission from Graves for two years now and feel great ..  after wanting my life to end with a very serious attack of Graves’ disease .

    Best of luck 

    Mx🌹

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    • Posted

      Hi Madge

      Thanks so much for the reply. I do feel so awful at the moment I have the tremors, heart thumping out of my chest and feeling really anxious. I could pee for England and go a lot the other way too even though I take tablets that make me constipated most of the time. 

      I've been to the doctors this morning and he said there is no reason to treat me as my thyroid tests are ok, I said what about the symptoms and he said that they only treat by the test results not the symptoms. So I'm back to square one. I said to him I just want to feel like a human being again, I have felt so ill for the past 15 years and just lately I have one new symptom after another.

      My last few test results that I have got are: -

      Serum free T4  23 ref range (10-22)                     Dated 19/01/2018

      TSH                  1.2                (0.3-5.5) 

      Serum free T4  20                 No ref ranges given Dated 05/06/2015

      TSH                   1.9

      Serum free T4   21                 (10-25)                    Dated 04/11/2005

      TSH                   1.1                (0.30-5-50)     

      My Vitamin D level was 31.1 in 2015 so I have been on vitamin D replacement since then.

      As you can see my levels of T4 are all on the high side but only go over once and my TSH stay on the low side but there is no doubt that I have the symptoms. I did have a test years further back than this but don't have the results, where the doctor said my T4 was high and wanted to send me to a specialist, however, I had a familly problem and went home to my family for a while. I was then tested again and my levels had gone back to normal  so I never did get to see the specialist.      

      I really don't know what to do now the is the doctor right. Are my results normal enough not to need medication? All I know is that I want to feel better and thought that I might just get to see an Endocrinologist who would help me. Sorry it's so long winded but it is quite a tale.

      Wx

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