Anyone with Graves-Basedow disease? (overactive thyroid)

July 20, 2016 10:10 AM

I was diagnosed with G-B recently and would like to hear from people who have or had it too.

I went to see an endocrinologist two weeks ago due to my rapid resting heart rate (160 bpm) and sudden weight loss, and so it turned out I have a thyroid disease (overactive thyroid). I'm taking some drugs to slow down my heart rate and some hormones for the thyroid too. What I've been worried about is that I found some terrible things about it online - such as you can go blind or have deformed or mentally disabled children, that there's a higher risk of miscarriage, bulging eyes etc. So I'd like to hear from people who've also been diagnosed with this illness - how has it affected your life? Did you have any problems with pregnancy/getting pregnant? Did you develop a so-called Graves' ophthalmopathy? Can the disease - or at least its symptoms, e. g. bulging eyes, swollen neck, slight tremor - go away eventually? For how long did you have to take the drugs? I asked my endocrinologist and he said it's impossible to tell now and maybe I'll have to take them for years. Please feel free to give any advice, thanks!
(I'm female, in my mid-twenties)

posted by U.N.Owen to Health & Fitness (8 answers total)

My mother had graves and she believes she had the side effect of bulging eyes because it went untreated for a long time. She eventually had her thyroid radiated and had to take synthroid.
posted by catspajammies at 11:47 AM on July 20, 2016

I don't have Graves, but I do have Hashimoto's thyroiditis, which is the other thyroid disease (besides Graves) that is an auto-immune disorder. Pretty much all the women on the maternal side of my family have/had it. We have all been quite successful in keeping it under control with medication (synthroid), which I started taking in my early 30s and have continued to take since then. NBD. My sister was advised to begin taking it when she was trying to get pregnant. While I know that there are people who have difficulty in addressing Hashimoto's, I believe that it's usually very treatable. Auto-immune disorders are no fun, but medical science is improving treatment for them every day.
posted by janey47 at 12:00 PM on July 20, 2016

I was recently diagnosed with hyper-thyroidism - my resting heart rate went off the charts! I was also knackered and couldn't run because my legs felt so week.

I was just so glad to have a diagnosis and some treatment after getting the run around. The medication has helped so much. Two months on I am a different person.

I did read up on the symptoms and got a little paranoid about the bulging eyes thing but that's really something that would happen after going misdiagnosed for a heck of a lot longer.

So I am just concentrating on how much better and more amazing I feel, I hope you do too!
posted by ozgirlabroad at 12:13 PM on July 20, 2016

I was diagnosed with hyperthyroidism (Graves?) over ten years ago. I had all the symptoms you mention including bulging eyes, goiter, constant trembling, very high heart rate, high body temperature, unable to digest food correctly, unable to sleep, unable to concentrate, lost about 30 pounds, and being a jerk to everyone. I had it in high school and I flunked every class that quarter. After diagnosis / treatment, the symptoms persisted for a few months, then things returned to normal - actually better than normal since I think I had low-level hyperthyroidism for most of my life.

The doctors said that taking the hormone-suppressing drugs for hyperthyroidism was bad for my liver and wasn't as controllable long-term. They were correct as a little over two years after returning to normal, my body decided to reject the medication and I lost around 20 pounds in a few months and became a little manic.

The long term solution (which happened in about three years after initial treatment) was to get radiation therapy (surgery is also an option) to destroy the overactive thyroid gland and become hypothyroid, which is much more controllable. I have to take synthetic thyroid hormone every day.

I still have to get my thyroid levels checked annually - absorption of the hormone can change, the exact formulation can change - but there aren't huge swings. Sometimes I'll be a little hot (too much thyroid), or a little cold (not enough), but these are livable, especially when you recognize the shift.
posted by meowzilla at 1:08 PM on July 20, 2016

I was diagnosed with Graves syndrome in my mid-forties. At the time, it was decided to use radiation treatment to resolve the situation. I took the radioactive Iodine tablet and over the next few months, things got better. As is common with this, I needed to take a thyroid hormone supplement as the hormone production of my thyroid was greatly diminished by the radiation therapy. I feel normal now.

I did not develop any eye symptoms or problems.

The treatment protocol differs depending on your situation. Radiation tends to be avoided if you are younger, female and intending to have children. In those circumstances, the preferred method is to use the medication to suppress hormone production to see if the autoimmune problem will clear.

I would address these concerns with your doctor since, as you know, this is not the place for the best medical advice.
posted by mygoditsbob at 1:34 PM on July 20, 2016

Big 'Ol case of Graves Disease here...my attending doctor actually called in an intern so that the intern could see all of the symptoms on display!
That was almost 20 years ago...in the first year of diagnosis I did have radiation therapy and it took a little while to get the levoxyl [now synthroid] dosage "just right".
My room-mate at the time could kind of tell that I was 'off' and would nag me to get checked for medication levels.
the last time I adjusted my med level was probably five years ago.
Very small dosage, but for the rest of my life.
It is now a very small part of my life--a very small, very manageable part.
posted by calgirl at 1:50 PM on July 20, 2016

I was also diagnosed with Grave's, in my 30s. No eye issues, though I did read too much about it and freak myself out!

I was on medication for a couple years but eventually had the radiation treatment 3 or 4 years ago. I swallowed a pill and for the next 3-4 days, I was not allowed to share a bed or bathroom with anyone. The result was hypothyroidism, for which I take synthroid. I had to have the dose adjusted a few times, but I feel fine and haven't experienced any other issues. As calgirl says - very manageable.
posted by Glinn at 2:34 PM on July 20, 2016

I was diagnosed with Graves' Disease about 6 years ago and had some of the same symptoms you described. The endocrinologist put me on a low dose of Methimazole, which I took for about 4 years. That, in combination with acupuncture and some Chinese herbs (IANYD) helped my symptoms. Throughout that time, the option to nuke my thyroid was there. I decided against it every time and have been in remission for a couple years now, which I guess is rare-ish. I did experience a weird, slightly bulging left eye and on occasion I'd wake up with the horrible sandy/gritty/can't open my eyes Graves' Ophthalmology. I was very careful about not eating a lot of iodine, as well. I'm not sure how much that helped, but was willing to try anything.

There is a lot of info. out there on the interwebs - good and not great. There are also a lot of support groups. As others have said, this is manageable. Hang in there.
posted by gertrude at 2:46 PM on July 20, 2016