Hyperthyroid no longer?

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Hi everyone, I'm new here.  Just wanted some advice.  I guess I will start at the beginning smile

Last summer I started getting symptoms (at the time were not obvious to me), such as rapid heart beat and exhaustion.  It would come and go.  I remember mentioning to people that I thought my heart was beating abnormally fast at times.  I didn't think anything of it.  Around this same time, I was having eye issues.  My right eyelid would swell up for no reason.  I was told I had a stye, and took meds for a few weeks, trashed any makeup I used, etc.  Then a month or so later, my eyelid was swollen again.  I went to the eye doctor and he had said that I had blocked glands, and he drained it for me.  Fast forward a few months to October.  All of a sudden, I have a bulge in my neck and serious pain.  I assumed it had to do with my job and maybe I injured my neck.  I went to the chiropractor and she said my thyroid was swollen and ordered an ultrasound.  I got that a few days later.  They found 5 cysts on my thyroid.  I then went for blood work and my levels were very high, indicating an overactive thyroid.  My doctor then referred me to an endocrinologist but wasn't able to see him for about two weeks.  During those two weeks, I wasn't doing well.  My heart rate was about 150 while resting, I couldn't sleep, would sweat at night, very shakey during the day, headaches that I never experienced in my life, and was incredibly tired.  When I finally got to the endo, he confirmed I had hyperthyroidism as well as Graves.  He seemed surprised that my eyes weren't bulging, and said they looked good.  He prescribed methimazole and propranolol and I took those for three months until I saw him again (got my blood taken again within two months).  During those three months on the meds, everything took a turn.  My thyroid shrunk back down, all of those symptoms went away.  The only thing that bothered me was the fact that I was so tired and exhausted all of the time.  I had zero energy.  I just saw the endo again about two weeks ago to review the new blood work and check me out.  Now, my levels were in the opposite direction.  Since my symptoms had gone away, he told me to wean off of the propranolol, which I did.  He also advised to stop the methimazole for two weeks, and then start back up again after those two weeks at a lower dosage.  Since I've stopped the meds almost two weeks ago, I have been feeling GREAT.  I haven't fellt this good since last spring.  I techincally am supposed to start back on the methimazole in two days.  I really don't want to as I am feeling so good without the meds.  I know it's only been a short time, but it's a gut feeling I have.  I was actually able to stay awake the past few nights and get work done.  My doctor is hard to get a hold of (I feel like they all are), but I'm going to call again today and see if this is normal and if he thinks maybe I should delay taking the methimazole again.  Does anyone have experience with this scenario?  Is it bad to not want to restart the meds?  I just want to feel normal again.  I guess I'm wondering if it's possible to go through all of this and have it suddenly go away.  Thanks in advance for any replies smile

jc

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  • Posted

    Hi jc412, first of all I'm happy to hear you are feeling great at the moment and it would be fantastic to remain feeling that way and I sincerely hope that you do (I'm sure you can feel a "but" coming along)......but I believe it could be short-lived.  From my knowledge of what I have learned on here and other forums and from my own experience with Hyperthyroidism/Graves the specialist has asked you to stop your meds because your bloods have gone "the other way" and I assume from that he means you have gone from HypER to mildly HypO.  When I was first diagnosed I was put on Carbimazole (same as Methimazole) and I also went from HypER to HypO and had to stop the meds for a while but then put back on Carbimazole so that the HypER symptoms didn't return.  I was diagnosed HypER/Graves in 2013 and mine unfortunately still isn't in "remission".  20 months into treatment with meds I was taken off the meds to try for remission and I felt fine but only for about 1 week and then the HypER symptoms came back with a forceful vengeance and I am currently back on medication and oh boy what I would give to feel "normal" again !  I really do hope that your symptoms do not return but please don't be too shocked if they do.  Many Graves patients do go into "remission" for a while (for some remission it short lived and for others it can be for years) but it's my understanding that they have usually been treated with medication for approximately 18 months.  I'm sure you will get many replies from more knowledgeable fellow patients on here.

    Christine

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  • Posted

    To become an empowered patient, always ask for and keep your own file on any tests done on you and learn what they mean.  Then when you post on Boards like this, you can post your test results along with the dose of meds you are on and that helps in getting good advice.  In Canada and most of the States, you are entitled to this information.  I was diagnosed with Graves in 2007 and am currently in remission.  I don’t know that I would have done as well had I not done this.  If I were where you are at now, I would want to know the results of my latest TSH, FT3 and FT4 and would have this tested before starting back on meds.  I would also want to know the results of my Graves antibody tests TSI and TRAb or TBII (some places do TBII instead of TRAb).  I would also want to know if I have Hashimoto antibodies and these tests are TGAb and anti-TPO.  Even if my thyroid labs are within the normal range, unless my antibodies are also in the normal range, I would not discontinue the meds totally until the antibodies normalized.  You need to know your TSH, Free T3 and Free T4 level to know when to start back on meds and at what dosage.   While I got good control of the excessive thyroid hormones being produced solely by taking Methimazole, my TSH would not rise for 2 years while I was on 10 mg of Methimazole.  This was because my antibodies were still high.  Then I read about a research study that showed the benefits of hyperthyroid patients taking Regular L-Carnitine at a dose of 3,000 to 4,000 mg daily.  I tried that and my TSH began to slowly rise.  I also found out that I and other hyperthyroid patients become deficient in many vitamins, minerals and amino acids and I was also deficient in Vitamin D so added Vitamin D3 gel caps supplement as well as Magnesium.  The addition of supplements taken along with my meds greatly helped me to go into remission and lowered my antibodies and I was able to gradually lower my medication dose.   By the way, having normal thyroid test levels is known as being EUTHYROID which is not the same as being in remission.  When your thyroid test levels are normal AND your antibody tests are normal, then you are considered in remission and I would not discontinue meds until I knew I was in remission.
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  • Posted

    Yes I did have the same story as yours.  But long story short, unless your TSH starts registering again in your blood test.  YOu are not OK.. 2014 I was diagnosed, I was up and down with meds and this was the time oh take me off the meds im good.  But that was shortlived.  mid 2015 finally TSH registering. then found a regular dose of 5mg every other day of methimazole now my TSH has been good between the levels. 
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  • Posted

    Hello jc412

    I have Graves and have enjoyed 2 periods of remission, the first one for 18 months. The second one for 18 years!..Unfortunately I relapsed around 8 months ago possibly as a result of the death of my husband nearly 3 years ago. My symptoms on this relapse were severe. I am having RAI in 3 weeks time. I really don't want to risk going hyper ever again. I wish you lots of good luck and you can see remission can be for many years. Remember we are all in this together, and one way or the other we will get our lives back!

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