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What can you tell me about Graves' disease?

(11 Posts)
Squirrelfruitandnutkin Sat 24-Sep-16 21:06:05

My dsis has just been diagnosed so I was hoping for a bit of info. not from Dr Google as he's never a good idea

I think she's been recommended radioactive iodine treatment , from what I understand it all treatment seems to involve knocking out the thyroid gland and then treating the resulting hypothyroidism.

I was also wondering if there was any genetic element to it - if I was also at risk of Graves/ other auto immune stuff? confused

Thanks in advance! smile

passportmess Sat 24-Sep-16 21:11:51

My mum had Graves after her Dad died and I developed it during a difficult time in my life. Mum had a thyroidectomy. I had meds and went into remission without needing Radioactive iodine. When diagnosed I had a heart rate if 140, was shaky,talkative, losing weight and had poor impulse control. You feel awful. I was put on beta blockers and started anti thyroid meds. Was in remission four months later, still in remission 9 years on. This is unusual. Most people take 2 years on meds and then relapse and have Radio iodine. I wish your sister well and how lovely of you to take the time to find out about her illness.

passportmess Sat 24-Sep-16 21:14:25

I think there is a genetic element to it and it is related to other autoimmune diseases.

Squirrelfruitandnutkin Sat 24-Sep-16 21:24:06

Thanks passport.

I should have said that she's had some meds - something beginning with C. And she had a really awful reaction to it. So I think the only options are to knock out the gland itself.

Glad to hear you've been doing so well.

im hoping dsis will feel better once her treatment plan is sorted out and starts.

passportmess Sat 24-Sep-16 21:57:40

Probably carbimazole. I was on that and then another called PTU. Radioactive iodine has been used for years.

I believe anti thyroid drugs were developed in the 1940s. Lots of Graves disease during WWII - stress.

Simmi1 Sun 25-Sep-16 11:52:28

I had Graves - I actually had no negative symptoms and the overactive thyroid was only picked up during routine medical. I had lost a lot of weight but put it down to my diet finally working grin. My pulse was high but I hadn't actually noticed. I went into remission after taking carbimazole for a while, then it came back and I was offered the radioactive iodine to destroy the thyroid gland. I refused as I had no symptoms at all when it came back and was scared of the procedure. This was the right decision for me as a year or so later I got pregnant with my first and the thyroid corrected itself and has been fine since. I see so many friends struggle with an under active thyroid that I am really glad I didn't have the procedure to be honest. My situation is different though in that I actually felt good with the overactive thyroid and I had no negative reactions to the carbimazole.

Squirrelfruitandnutkin Sun 25-Sep-16 12:51:49

Could either of you tell me about the radio active treatment?

Dsis lives on her own so I'm worried about if she's going to feel awful after the treatment. Any experience or advice?

passportmess Sun 25-Sep-16 15:34:28

I don't know how RAI feels but I know you need to keep some distance from others for a while after treatment. So you can't use the same utensils, sleep in the same bed etc

devilinmyshoes Mon 26-Sep-16 08:03:40

It's only for a few days, a week or so? It didn't work for me, they think another med I take suppressed the uptake of iodine but there is the option of surgery. They told me at my first appointment there's no cure and the only real treatments are RAI or surgery.

booox Mon 26-Sep-16 11:33:08

Do get this book; it's so very useful and helpful. The British thyroid foundation are also a really helpful charity with lots of fact sheets and a magazine that can be accessed online. Also some volunteers to call and some areas have meetings which can be really helpful.
Can be found in Amazon.

Squirrelfruitandnutkin Mon 26-Sep-16 17:50:35

Thanks all!
Dsis is probably getting her treatment next week so fingers crossed she'll start to feel better soon! She lives alone so isolation is not hard to organise, but is hard for other family members worrying but needing to stay away dmum in particular

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