Can anyone tell me about your treatment for hyperthryoid/Graves disease?

[Anonymous]

My mom has Graves, was diagnosed around age 40. This was 25 years ago, when nobody tested you for thyroid issues so it took her a year of misery before she got diagnosed.

It is very hereditary, but she says that once she got diagnosed and started treatment, she has felt great and in 25 years has had no issues. They wiped out her thyroid and she takes synthroid.

I get tested every year because of the hereditary nature of the disease, and so far, nothing. I just got my annual test today and am afraid this year is the year - I'm down 10 pounds and can't get the weight back on. I've had my second baby, and my body has never reacted well to BFing (I lose weight), but I weaned a few months ago and the weight has not gone up. Otherwise I don't seem to have any symptoms.

I've also been skinny but this is ridiculous. Anyway, just wondering if anyone can tell me what to expect assuming I do have an issue. TIA!

[Anonymous]

Sorry, meant "I've always been skinny..."

[Anonymous]

Sounds like you should get tested. I have Grave's Disease, but only needed to take medication for about 1 or 2 years. That stabilized my thyroid. Still very thin, but not overly thin, like before. What was so surprising was how much better I felt once I started treatment. Hadn't even realized how awful I felt all the time! The sooner you get tested, the sooner you can begin treatment and start feeling better.

[Anonymous]

There are three treatments - surgery (very rarely done), medication, and radioactive iodine treatment. It sounds like your mom had RAI, which destroys your thyroid so you need to take thyroid hormone for the rest of your life.

I've had Graves for several years, but most of that time it has been in remission (normal labs, no symptoms). I never had a seriously hyperactive thyroid. It was always subclinical - low or no TSH, normal thyroid hormone levels. What that means is that the pituitary is compensating for excess thyroid hormone in the blood by releasing less TSH (TSH is what stimulates the thyroid to make thyroid hormone). Graves is an autoimmune disease and getting tests for antibodies can be helpful in terms of seeing how strong of an autoimmune response is going on.

I've read a lot about Graves and learned that in the US RAI is the preferred treatment, while in most of the rest of the world medication is the preferred treatment. The first endo I went to wanted to do RAI on me. I got a second opinion and the second endo recommended monitoring. I am glad he did because in a matter of months my Graves went into remission on its own. A couple of years later after a stressful period in my life (death of a parent) it returned and I took meds. The meds put me back into remission pretty quickly. I stayed on the meds for less than a year and stopped when I got pregnant. Since then all has been normal for the past few years. I still go to the endo every six months for monitoring. In fact I am due to go soon and your post reminded me that I need to get my labs done! HTH

[Anonymous]

I have had graves for almost 9 years now. I have never needed more than 25 mg of PTU (the smallest dosage they make is 50mg, so I have to split them in half) to keep my levels normal, and now I have been stable off meds for the past year.

I have never had trouble with weight loss, as I am in the lucky 5% of graves patients who gain weight instead (yay me!) I have trouble off and on with palpitations even when my levels are normal, and I had a bit of a scare with my eyes, but they have stabilized and all is well.

Other than the weight gain and partitions, I feel pretty great most of the time.

[Anonymous]

Thanks everyone! OP here. I should get results back next week. My doctor is really great, she is doing a full thyroid panel and autoimmune panel as well.

I feel better reading this thread. I think a lot has changed since my mom got the treatment that wiped out her thyroid. I'm hoping they will be able to put me on something not quite so drastic, and it's good to know that things can get better on their own. It makes sense since many autoimmune diseases are like that.

[Anonymous]

I was just dx with graves. I am actually opting for the surgery. I think it's pretty bad and it can come back with RAI so I want to do the best method possible to get better. I think surgery is more common than people think. RAI is worse on your eyes and bones. And my eyes are bad enough. My mother had RAI and she is the only one in the family with osteoporosis. I know the RAI is less now than when my mom had it done. But, I will bring it up with the dr on Tuesday and find out.

[Anonymous]

I had the radioactive iodine treatment in 1995. My father had had Graves years before(it runs in my family). He had tried the medication unsuccesfully and then had the RAI, so that's what he advised. The docs concurred, mainly because I had not had my children yet. I was told it would be easier to monitor my levels when I was pregnant if I had the RAI done.

The actual tx was not that bad. I have found, though, that it made me more sensitive to medications and their side effects - like it altered the chemistry in my body.

I go to the dr. once a year to get checked. My weight is stable and I really don't think about this dx unless I am listing my meds or medical history for some reason.

[Anonymous]

Anonymous wrote:Thanks everyone! OP here. I should get results back next week. My doctor is really great, she is doing a full thyroid panel and autoimmune panel as well.

I feel better reading this thread. I think a lot has changed since my mom got the treatment that wiped out her thyroid. I'm hoping they will be able to put me on something not quite so drastic, and it's good to know that things can get better on their own. It makes sense since many autoimmune diseases are like that.

Good luck, OP, let us know your results. And you're right - treatment shouldn't be drastic. Nothing to worry about.