The FastDay Forum

Hello,
I am a relative newcomer here. I started IF at the end of November 2014. Did IF for a few weeks, lost 9 lbs, and then started feeling terrible--insomnia, jittery hands and heart, emotionally unstable, shortness of breath. Then I put it together--my thyroid had kicked into overdrive. (I had a hint this was coming because I had a couple of very low TSH readings.) Anyway, it is now full-on Graves disease. I am on Methimazole. Not feeling much better yet, but it has only been 2 weeks. I would like to know if any of you have experience with Graves and if you could tell me what I might expect. I understand some people go into a remission--are there things I can do to help me in this direction? If I have to have my thyroid removed and am on synthroid, is weight-gain inevitable? Help....

[Tracieknits]

Hi and welcome!

I have been battling Graves disease since 2010. I managed to go into remission twice, even got weaned off the methamizole and maintained healthy thyroid levels for a period of 9 months once and six months the second time. But then both times in Junes, I had sudden and severe recurrences of my Graves disease. My endocrinologist said it's possible that since it's an autoimmune disorder, when my seasonal pollen allergies flared up in June, it triggered my Graves - the whole immune system being related and all.

I finally gave up battling and got the radioactive iodine treatment last week to treat my thyroid. I got the smaller dose of radiation (15 millicuries) -- it has a higher chance that it will simply beat my thyroid into submission and that I'll return to normal thyroid function, and a lower chance of completely killing my thyroid. But it has a higher chance of not working at all and that I'll need to be retreated in a year. I think the chances are something like 30%/50%/20% (as in 50% chance my thryoid will simply die).

Last time I started the medication in June (2014) and it took really two months to feel healthy again, but I didn't get a normal T3 level until September. Then I had to have a root canal, which my endocrinologist said would aggravate my graves, and my levels shot up again (along with my heart rate) for a few weeks. Then they fell steadily until in December, I actually had a *low* T3 reading (but still very low TSH).

They're saying that over the next six months, they'll just have to watch what happens. My thyroid has sped back up, like they said it would after the radiation treatment. It should start to slow down in the next week or two and will level out sometime in the next six months.

My understanding of Methamizole is that about 40% of people take it, get down to normal, get off of the medication and then never have a problem again. If you get a recurrence of Graves, your chances of methamizole curing you again drop down to like 15%. If you get two recurrences, don't ever count on living without Methamizole. Now I know that in Europe, treatment with methamizole is preferred to treatment with radioactive iodine. But my endocrinologist strongly recommended I not treat with methamizole for life, due to a rare freaky but dangerous side effect. They talked to you about watching out for a severely sore throat, right? It's very, very rare, but does happen.

So now I'm just hoping that I'm one of the lucky ones, and my thryoid will be beaten into submission by the radiation and behave properly.

As for tips - I guess I wish I had avoided large amounts of iodine. I started eating sushi a couple of times a week before my last flare up. I had no idea that seaweed has so much iodine in it! It has something like 5000 mcg of iodine per serving. Another high iodine food might only have 75mcg (like cod or iodized salt). Anyhow, the thyroid uses iodine to make T3 and T4, so it's kind of like stacking up loads of fuel near a furnace that's overheating.

If your heart is feeling fluttery and beating very fast, don't exercise! My doctor who loves exercise and got very happy about my pedometer is also very careful to say that if my heart starts beating too fast, I need to slow down. He says it's not worth having a heart attack, and that's a real risk when the Graves disease is active and your thyroid hormone is too high.

Good luck and feel free to ask me anything

Thank you sooooo much for getting back to me and for taking the time to tell me about your experiences. Reading your post makes me realize that this is something I will be dealing with for a long time to come Thanks for the tips about the iodine--I feel like part of my issue may stem from the fact that I must have had very low iodine intake for many years because we didn't use iodized salt and mostly eat at home. But about 2 years ago I decided we should have iodized salt in the house--it was about a year after that when I had my first very low TSH reading. Who knows.... In any case, thank you again. I'm sure I will be in touch again. I hope that your RAI treatment works and that you are 'all better' soon!

Hi, I have just joined this forum as I have been off and on 5.2 for about 6 months. I can't believe there are others on here with graves. I was wondering if this 5.2 has helped anyone else with graves. I have been on carbimazole for about 18 months now, just waiting for my tsh to stabilize as it was undetectable when I was first diagnosed. Hoping to get off it soon, although I still have all the symptoms of graves they never really disappeared. Interesting reading your stories a lot of similar symptoms. I can't seem to lose weight I have tried so many different diets but this one seems to be the only one I lost a small amount with. I think I give up too quick and move on to the next one so I plan to do this without changing and see how it goes.

[Tracieknits]

Welcome to the forum Debzie17!

I think that fasting helped my graves disease. When I was fasting while on Methamizole, my body responded very well and I started needing less Methamizole. I would suggest monthly blood draws to check your levels, especially if you start feeling hypothyroid.

Best of luck to you!