Please help, hyperthyroid, told thyroid is failing

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hi, I've been taking 4x5mg a day of carbimazole, my levels dropped but my GP says my thyroid is/will fail which I'm dismayed about.

i had symptoms for a few years and was fobbed off , the hospital send me home shaking  and saying I was just anxious!!!

i feel a bit better , but my weight is jumping about, up , down , up, bu half a stone each time, I've lost 2 more. 

I don't want to put it all back in.I need to know a good way to deal with this illness , and what to do...surgery? Tablets??

please help, I'm in a muddle !!

isnit safe to reduce my med levels? Is the carbimazole level making my thyroid fail?

what can I expect from now on?

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10 Replies

  • Posted

    Hi jan.h.It does look as if you haven't had your thyroid problem explained to you properly by your Doctor.You are obviously hyperthyroid which is why you are being treated with carbimazole to reduce the symptoms. Can you find out what your thyroid blood test results are TSH,T3 and T4 and also antibodies.Have you had a scan?Has your Doctor told you if you have any nodules on the thyroid or if you have an autoimmune disease which affects the thyroid.There will be plenty of people on here who will be able to help you if you can give us a bit more information. Please don't worry you are not alone and we will support you through this x
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    • Posted

      I'm seeing an Endocrineologist on Wednesday , I've a lot of questions , and your reply has helped and made me feel less alone...

      he says my levels dropped last week, but I'm now feeling hot and nauseous and suspect differently this week....

      pall I've been told is my thyroid will fail and I'll need medication for my metabolism for ever...

      i intend to get the answers properly ....

      thanks.....will update in 2 days x

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  • Posted

    Hi jan.h, 

    It can be really frustrating to have to deal with inexperienced hospital staff, since symptoms of hyperthyroidism are so similar to those of anxiety.

    To get the best advise on this forum you could be bit more specific about the timeline. When where you diagnosed? What was the diagnosis? How long have you been taking the medication?  Do you know your thyroid and thyroid antibody levels (and the normal range)? What are your current symptoms? 

    From what your GP mentioned I would guess that you have Hashimoto's thyroiditis, that is your thyroid is being attacked by your own immune system and can go from hypothyroid (low thyroid level) to hyperthyroid (high thyroid levels). That would explain your weight gain and loss cycle. It appears that currently you are in a hyperthyroid phase. That's why you are taking Carbimazole right now.   

    I think it is very important to ask your GP for a printout of all your blood tests. That way you can find out what levels are optimal for you. Should your thyroid

    eventually produce less thyroxine than required then your GP will have to prescribe thyroxine according to you thyroid levels and body weight.

      

     

      

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    • Posted

      Hi, thanks so much for helping.

      my GP hasn't mentioned Hashimktos at all, only that my immune system  is attacking my thyroid and it will fail.

      im looking for answers and will get a levels printout .

      i will respond more in 2! Days, after my endocrine appointment.

      ps should I ask for a scan? All they do is take bloods ATM x

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    • Posted

      Your endocrinologist will probably examine your neck to see if your thyroid is enlarged. A scan is usually recommended if the thyroid is swollen and causes problems for example when swallowing. A scan is also done to check if you have nodules.

       

      In my case they did not do a scan, just blood tests. I guess my thyroid was not enlarged.

       

       

       

        

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  • Posted

    Hi Jan.h.Don't worry about the Doctor telling you that your thyroid will fail.People who have hyperthyroid often have surgery to remove their thyroid or treatment called Radio Active Iodine to prevent it working.They then have to take Levothyroxine daily for the rest of their lives and annual blood tests to check levels.Your blood tests are obviously showing antibodies which is why you are taking Carbimazole but it would be helpful to ask for a scan to check if you have any nodules on the thyroid which may also be contributing to your symptoms.Hope all goes well at your appointment and can I suggest that you make a list of questions to take with you.Don't be afraid to ask !! x
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    • Posted

      So, it's Graves Disease, and a severe case, my levels are more than triple the normal level, and antibodies count is off the scale and I have  a problem of T3 Toxicosis. My goitre is pronounced and I'm very hyper , anyone else going through this stage?
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    • Posted

      Hi jan.h.At least you know what you are dealing with now.I also have Graves so know how you feel.Did you manage to get any of your actual results? What has your endo prescribed for you.Are you on Carbimazole and Propranalol?What are your symptoms and what has the endo suggested for future treatment? I'm sorry that I seem to be asking a lot of questions but the answers will help others on this panel to help you as well.I have been on 15 mgs of Carbimazole for nearly three years and 160mgs slow release Propranalol to help reduce the fast heart rate.I was offered RAI but I refused as I didn't want to destroy my thyroid and it doesn't get rid of the antibodies.I'm sure there are loads of questions you want to ask.
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    • Posted

      I know a level was at 43 , supposed to be 9 ....he's sending the results with a letter.

      he was very helpful and reassuring, and commented wryly to my million questions in 2 minutes that we hypers tend to fire questions....lol...sound familiar??!!!

      im on 20mg of Carbimazole a day and beta blockers for the fast heart rate, to be used with caution as I've asthma.

      i feel horrible today, hot , itchy and unable to settle. 

      Hes seeing my regularly, no harsh exercise, and more bloods, says it will take about 18 months to know if my thyroid settles....

      Hoping thjs improves,,,

      Luckily though I have a little eye pressure, my eyes generally are fine, a little blurry but not bad! X

       

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  • Posted

    go get check with endo they know what to do.  i was at worst condition as yours 2 years ago.  take multi vitamins with out iodine/iodide but with d3 and magnesium... hyperthyroid ussually get defficiencies in those category.  
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