Hyperthyroidism returns?

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Hi

I am new to this forum and have been reading through many of the posts relating to hyperthyroidism & Graves. Some of it is very reassuring and other bits are a wee bit scary!

I'm wondering if anyone has been in my situation before and was hoping for some advice.

I was diagnosed with Graves disease over 2 years ago & was seeing an endocrinologist who was about to put me on medication when I asked them to do another (3rd) blood test. I felt my symptoms were disappearing & didn't want to take medication unnecessarily so when the blood tests came back normal I wasn't surprised & skipped out of the surgery thinking that would be it. The consultant did say he hadn't come across a patient with self-resolving graves before so he told me to expect it to return....

So that was 2 years ago & now my symptoms are back. It started with what seemed to be an allergic reaction (although I have no allergies) - I was covered in hives and my face was swollen for 48 hours. I have a heavy beating heart, a feeling of not being able to sit still, I can't sleep, have sore grainy feeling eyes and I am losing weight. I know I need to go & get more blood tests but I was wondering if anyone had experienced this before?

I don't want to go through all the tests again if it is likely to resolve again in a few months.

Any advice/insights would be much appreciated!

J

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6 Replies

  • Posted

    Hi J. Welcome to the forum.

    Didn't you have any medication 2 years ago when you were diagnosed with Graves?

    As you will know there's no cure for Graves, and the symptoms do tend to come and go.

    I was diagnosed over 40 years ago, had a course of treatment and was fine until three

    years ago when it came back. The symptoms were much worse the second time round.

    You certainly have the symptoms of an overactive thyroid, and I think i you'd be wise to

    see your doctor. If your heart rate is too fast he'll probably prescribe betablockers. I

    certainly felt a lot better once I was on them. I use artificial tears as my eyes are often

    dry and sore.

    When symptoms keep recurring most endos will suggest a more permanent solution -

    either surgery or radioactive iodine. I went for the RAI, and I feel fine now.

    I hope you feel better soon. Let us know how you get on.

    Marigold,

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  • Posted

    Hi Marigold

    Thanks so much for replying. 40 years is a long time to have been putting up with these symptoms - you must have 'seen it all'. I didn't get any medication the 1st time round as my blood tests seemed to have gone back to normal & we agreed to wait & see if it came back. I naively thought it wouldn't as I haven't really had any medical problems in the past - not that this should make a difference!

    Ill book an appointment for the docs & be sensible!

    Thanks .& take care

    J

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  • Posted

    I was lucky my Graves was diagnosed before my symptoms became extreme. I was put on 10 mg of methimazole initially which immediately corrected my T3 and T4 but my TSH remained at 0 for two years. Then I read a research paper that stated that the addition of L-carnitine was beneficial to Graves patients. I tried regular L-carnitine and TSH came up to .05. Then I tried three different carnitines together and my TSH came up to 0.78. My methimazole was lowered to 5 mg daily. When I went back to the store to get more carnitine, the Canadian government had banned the sale of it from Health Food Stores. One year later, I was able to get it when they lifted the ban. I found that the Acetyl-L-carnitine is the one that works. My TSH immediately rose to 1.4 and my last one was 2.4.

    I would never have RAI or surgery. Everyone I know does not feel normal after this even with the addition of Synthroid or Eltroxin. Some feel better on a T3/T4 combination but I don't think it can ever replace your own thyroid working normally.

    L.

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    • Posted

      Hi Linda

      I know this post is over a year old but wondering if you're still here. Would like to know how you're doing and ask for advice :-)

      Thank you

      Jeannie

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    • Posted

      I am still here.  My thyroid is working well with all lab values in the normal range.  On very low dose of Methimazole 2.5 mg every other day.  Taking 500 mg of Regular L-Carnitine on the off days and still continue to take my other supplements.  Always need to be mindful of stress reduction techniques because it is stress that triggers the disease.  
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  • Posted

    J

    I have also had similar symptoms to yourself on two different occasions and it was determined I had what is known as a serum sickness reaction first to a bee sting and the second time to the drug Cloxacillin. Many doctors have never seen this and do not know of this diagnosis. Both times I had a one week course of Prednisone and my symptoms resolved. I know a friend who had this due to a protein drink she was taking. It takes some figuring out what the trigger is.

    L.

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