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Hi all I was first diagnosed with graves disease back in 2015 put on Carbimazole for a year levels where great back to normal so they took me off it. 6 months down the line I was getting my symptoms back heart racing, anxiety, sweating, tiredness also lost a stone in 4 weeks. Off I went to the doctors blood test confirmed overactive thyroid again T3 and T4 levels high with TSH level at 0.01... back to thyroid clinic I go doctor I seen was so lack of sympathy and damn right rude felt like giving her a piece of my mind! I'm on proponolol for heart racing been back on mediaction now for 3 weeks tbh symptoms not improving at all my heart is awful. I have two young boys and I feel this disease is robbing me of my energy I am also a support worker working with the elderly with dementia so I need to be alert at all times. I just want to feel normal again 😢 x

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  • Posted

    I understand how you feel.  I have had normal lab tests for quite a while now but my Endo is very good about the slow decrease of medications and told me he would not take me off Methmazole totally unless my antibodies have returned to normal as well as my thyroid lab tests.  I also found that hyperthyroidism depletes the body of a lot of vitamins, minerals and amino acids so I felt a lot better when I replaced them with supplements like L-Carnitine, vitamin D and Magnesium.  I am currently taking Methimazle 2.5 mg every other day.
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    • Posted

      I agree Linda that's it's good to get extra vitamins & minerals in your body. I actually started taking supplements for my PMT so it's helped on 2 counts x
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    • Posted

      I will look into supplements I am a pain for remembering to take tablets though I only remember to take thyroid medication because I feel so crap! Xx
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  • Posted

    Aww sorry to hear it's returned. I feel for you especially with having young kids and an unsympathetic doctor!! I've just stabilised after mine returned for a 3rd time!!! First was in 2008, then again in 2010 and then in June 2015. Each time I've gone onto carbimazole until I reached normal levels. Have no intention of getting RAI unless absolutely necessary. I've tried to learn as much about the illness as I can and know the telltale signs of it coming back so I caught it quickly this time although I have to say the onset was quick & severe. I sat in the Dr's surgery as if I was high on drugs.....my whole body was shaking and I looked an utter state! But as I say it's settled again and I pray that I get a good run at being in remission. Hang on in there. Always go with how your body feels & it's good to know your levels after a blood test. I knew when to cut down on the carbimazole this time so I didn't swing to underactive. It's a roller coaster x
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    • Posted

      Thank you thats how I feel sometimes like I'm on drugs .. I wizz around work like a crazy lazy I walk really fast. Some days I have a massive burst of energy my body is so over active then I burn out and have to have a day in bed thankfully I have a very supportive fiance x
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  • Posted

    I was diagnosed I 1992 aged 32 with three children under 6. It was a horrible time so I really empathise with your situation. I don't know if things have changed a lot since then but as I had quite a large goitre I was told I had to have surgery. I just wanted to feel normal so I went ahead. A few months later I started to have underactive symptoms and was started on thyroxine which over the next couple of years I had to have it increased. In 1999 it was found that my thyroid had regrown and I had RAI. Almost immediately I became very underactive, I could barely walk, stand or even hold a phone, it was a nightmare. Since then my thyroxine dose changes at least a couple of times a year. I had a thyroid scan last year and was told that I had barely any thyroid tissue.

    I wish I had been better informed at the outset and certainly nver had the RAI.

    I wish you all the best. Debbie

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  • Posted

    I'm only just getting my awful symptoms under a sort of control, I've felt so ill for so long. I take recommended supplements , Brazil nuts too...and eat small regular meals , and best of all, I've found a dosage which suits me. I take 4 carbimazole a day. Often rec. to take all at once. I tried 2 x am and 2 x pm ...ok, , then 1 at 8 am, 12 , 4 pm and 8pm....ok, but afternoons were hard and I slept badly.

    im now on 1 at10am, 2 at 2pm and 1 at 8 pm.

    this seems to work for me, my GP said to make sure I get the same levels daily ...I'm busy in the afternoons, sometimes perform evenings...

    lim awake , alert, and sleepy at the right time. I've gained back a bit of weight , sadly! But...I feel like myself for the first time in a long time.

    its not all good news , I'm still a bit anxious, I do still get palpitations, I can't exercise like I want , or endure much stress before I get the shakes which are exhausting and I look haggard ....

    my advice....

    do what worked for you before, and reduce, don't stop, when you feel better. Try the supplements...selenium, complex b fits with biotin...

    land keep cheerful , I've been an anxious grump , and I'm trying to repair the social damage ...people just don't understand...how can they, they don't endure this awful disease.

    let us know if anything changes for you....

    i hope people help here...

    best of all...

    YOURE NOT ALONE xxxx

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  • Posted

    Hello Jennifer, I know how you feel, as that happened to me too, after I was Graves-free for 2-3 years.  I refused point blank to have RAI but opted for block and replace the second time round, which I completed at the end of March last year.  So far, so good, although with all the stress I've had in the last year, including the death of my father, my mother getting dementia and me caring for her at home, I was anxious Graves would return.  I actually put most of the blame of it returning before on the consumption of aspartame in a medication.  So I would advise anyone with Graves to read all ingredients on medication etc and stay well away from aspartame!  I hope you will be able to feel normal again as son as possible.
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    • Posted

      Hiya and thanks for commenting I really feel for you with all the heart ache you have faced I hope you have a full recovery too. Graves is hard enough with added things in life to deal with. Sorry to hear about your Dad and also your Mum I support people suffering with dementia so know the impact it has on the family also xx
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