Has anyone had Graves return after 10+ years in remission?

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Hi All. I'm new here but am wondering if anyone has had this experience. I was diagnosed with Graves in 1997 after the birth of my first daughter and was put on blockers for about 12-18mths. This put me in remission and for a few years after I needed to replace with Thyroxine although stopped after 5 yrs because I didn't need it anymore. I had two more kids after this and no recurrence even though the specialist warned me this was a risk time with changes in hormones. About 4 years ago I became hypothyroid and was again prescribed thyroxine. All was stable until 5 months ago when my TSH levels dropped almost to zero. My GP has reduced my medication about 4 times since then and still my TSH levels are almost zero. I am, I guess, at that stage in life when hormone levels are beginning to change due to menopause. So, my question is, has anyone had a similar experience? And what was the outcome - fluctuating TSH due to menopause or maybe due to recurrence of graves or something else? Your help is appreciated.

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  • Posted

    While it is usual to put patients on beta blockers until they are diagnosed, in my case after diagnosis I was put on Methimazole and the beta blockers were stopped. You don't mention if you were treated with RAI or surgery.

    I have never heard of a Graves patient needing Thyroxine unless they were treated with RAI and/or surgery or they have both Graves Disease and Hashimoto's disease.

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  • Posted

    I've been told by my GP that it is possible to become hypothyroid with .Grave's disease. The antibodies produced can eventually attack the thyroid gland and destroy it, meaning you will need to take thyroxine if this occurs.
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  • Posted

    I was diagnosed quite quickly in 1997 and my GP prescribed Carbimazole in what turned out to be too low a dose. I couldn't see the endo specialist for about 2 months and he immediately saw the mistake and upped the amount. I took this by itself for some time until after a number of months I was hypothyroid. After the 18month period they stopped the Carbimazole and monitored my TSH etc levels. I continued on thyroxine for some months but after about 2yrs my thyroid hormone levels remained normal and they declared I'd gone into remission. I became pregnant again in 1999 and after the birth of my son I was still fine. Another daughter in 2001 and still fine. No medication through this time. Where I live, the specialists always do drug treatment first, then RAI or surgery if that doesn't work.

    In 2009 I went to my GP after a serious outbreak of hives or something similar and because I was feeling exhausted. She ran the tests and discovered I was hypothyroid. No referral to the specialist as it was a simple case of needing thyroxine.

    The rest of the story is in my first post.

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  • Posted

    I was first told I had a low TSH, in 2008 near my 60th birthday, and was officially diagnosed with GD in 2009. I am in the USA, where the endocrinologists typically use Methimazole (MMI) instead of Carbimazole, so I was started on a high dose of that, along with a Beta blocker with instructions to reduce the MMI dose and stop the Beta blocker after a month.

    I was also to see the doctor at the end of 2 months. By then, I was going crazy with what, in my opinion, were symptoms of hypothyroidism. I had also noticed taking two 5 mg tablets in the morning and two in the evening was making me so forgetful that every other day I would forget to take the morning dose. I was on vacation in the mountains and couldn't get cell phone signal to contact the doctor, so I took it upon myself to simply skip the morning dose.

    I was also so new at the procedure that I didn't remember that I was supposed to have lab work done before seeing the doctor. He labeled me as "non-compliant" and said it would do no good to have the lab work done until I had been compliant for two months. That was the beginning of a year's nightmare under treatment from that doctor.

    After a pleasant Summer of rebellion on my part, having weaned myself off the MMI (then at a dose of 12.5 mg daily), I agreed to go to another Endo for a second opinion. He started me out low with a 5 mg dose, building up from there. Again, I had hypo symptoms from the start of treatment, but suffered through it, having hardly any other option.

    A turning point came when I fell flat on my face in the street between the day I had my labs done and the day of my visit to the doctor. He wanted to know what caused my fall, and, whether or not he actually understood what I had been saying all along that it is very hard to know what is happening when your brain is in a fog, at least he took compassion on me and reduced my MMI dose slightly. My TSH was still at zero, but 3 months later it had risen to about 2.5, and after reducing my dose by another slight amount -- one pill per week, I think -- my TSH rose to over 5.0 being slightly above the normal range.

    From that point on, I felt I needed to take my health into my own hands and reduced my own MMI according to my symptoms, informing the doctor as to what I had done after I did it. I didn't go hyper again while under his care, but was able to go off the MMI entirely in December 2012. Unfortunately, I felt hypo without a high enough TSH to get treatment, so I went to Endo #3 for another opinion. She wouldn't give me Levothyroxine either, saying that the smallest possible dose would probably make my hyper. She was the first one to explain that I had both types of antibodies present, consistent with both GD and Hashimoto's Thyroiditis.

    She was out-of-state, at a great distance, and wrote a letter I could have my primary care physician read and have the necessary labs done which she intended to interpret and determine if she needed to see me again within a year. But my insurance wouldn't pay, either. Endo #2 refused to see me again, because I had gone elsewhere for a second opinion.

    Because of this turn of events, my PCP was willing to treat me as well as to run the labs. He gave me options and I chose Cytomel because I knew it was fast acting and quick to leave the system in case it made me hyper again. He prescribed enough for a 5 mcg pill per day, but told me I could take up to 2 pills per day depending on my symptoms.

    I was very haphazard at first, not quite realizing how my body would respond, but in general, my symptoms improved. My TSH also rose somewhat. It had been borderline low (with a somewhat low T3 and average T4) when I went to Endo #3, and my PCP didn't have more tests done until after I had been treated for 6 weeks. He gave me more guidance after seeing how haphazard I had been in taking the doses. I had even learned how to split the tiny pill from fat quarters into thin quarters (eighths.)

    The next 6 weeks, I built up my dose gradually from an eighth pill (0.625 mcg) each day for a week or more, to a quarter tablet, 3/8, etc until I was at a half tablet for at least a week before my next blood test. My symptoms were mostly tolerable and my TSH had risen again nearer to the middle of the range.

    I continued to build up to a pill and a half by the next lab date, and felt like I was at an optimum level with my thyroid hormones. I had also been put on Levothyroxine during this time. I think I made two mistakes, though. First, I got confused when I picked up the Levothyroxine (L-T4.) I thought I was supposed to take 25 mcg, but it was for 50, so I simply took them without questioning it. I also had raised the Cytomel (L-T3) by the last quarter tablet just a few days before the blood test, when I suppose I should have waited until after the new labs. My TSH was 0.009. I immediately decreased the L-T4 to 25 and the L-T3 to just one tablet (5 mcg), but my symptoms returned with a vengeance, so I increased again by a quarter tablet of the L-T3.

    Now, I'm going to Endo #4. My TSH rose slightly again, but is still below range, and he is having me reduce the L-T3 to 1/2 tablet now. I am struggling a lot with it, but trying to be compliant.

    I really suspect that my problem is genetic, more than just the autoimmune response, such that my sister and I, and probably some of my 4 children as well as cousins and other relatives have a defect that doesn't allow for a high production of TSH no matter how low my T3 may be. It also seems like my free T4 stays close to the middle of the normal range no matter what my TSH is doing.

    Sorry about the length of this post. I hope my past history helps you, though.

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  • Posted

    When I was diagnosed, I was put on 10 mg of Methimazole. My T3 and T4 immediately became normal in the middle of the range but my TSH was less than 0.01 for two years. I did not want to take any higher than 10 mg of methimazole. I read an article on the use of L-carnitine in Graves disease and found that the acetyl-L-Carnitine was the most effective type in raising my TSH without lowering my other two values. I have gotten my TSH into the normal range now. It is a delicate balance though keeping it where I want it and not allowing it to go too high. When it does, I reduce or discontinue the Acetyl-L-carnitine. I keep my methimazole at 5 mg where I have no symptoms. I also read that changing lifestyle can help Graves patients, specifically discontinuing the use of sugar and eating healthy meals with protein and vegetables, having sufficient exercise per day, etc. Acetyl-L-Carnitine can be purchased at most health food stores. However, I get blood levels checked at least once a month. I think most Graves patients are deficient in Carnitine. I know I was in the beginning and even after supplementation my carnitine levels are not in the excessive range.
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  • Posted

    Thank you for the information, Linda, maybe acetyl-L-Carnitine is the answer for me, too. I'll check it out.
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