Does anyone have long term remission from GRAVES DISEASE?

[Erin60]

Hi

I’m desperately trying to get Graves’ disease into remission.

I’v only managed 18 months in 8 years. I’m being pressured by endo to make a definitive decision but I don’t think either RAI or thyroidectomy will cure graves and I will be left with graves plus hypothyroidism.

I get so cross at the way endo seem to dismiss my concerns about these choices saying it’s only one little pill a day !.

It feels like we are in the dark ages with this disease, not only are both medications propothyrocil and carbimazole so toxic There hasn’t been any new medication for Graves’ disease in over 61 years !.

RAI and thyroidectomy are neither great choices for Graves’ disease as Graves’ disease is in the blood and I feel the antibodies will attack my eyes if my thyroid is not available to them..

[Belle_architect]

In 2005, when my first born was 18 Months old, I began having hyperthyroid symptoms after I had gone to the doctor when my son was 7 months with complaints of weight gain and hair loss and was told that I looked good on paper with my thyroid levels still within the normal range, except I was on the very low end. So my diagnosis of Graves’ disease was given to me then. I was put on ptu but could not handle it. Then I was put on tapazole.

After 2 months on it, I had to be taken off it because my thyroid was in the normal range now. It is about this time that I went to get a second opinion. They said I had been misdiagnosed and that the antibodies for hashimotto’s disease where showing that I had that disease instead.

A year later I became hypo. I started taking synthroid at very low doses. By the time my son was 3, I was taken off synthroid. I have had my thyroid levels checked every few months until now in 2019, in January when I became hyper again which I believe was due to a miscarriage at the end of November 2018. I started to feel muscle aches, I could go up the stairs or get into a car. It was with a lot of pain and difficulty.

They told me I needed tapazole. I decided to take propranolol for my heart instead because I was told I had hashimotto’s so I assumed that this would go away in a few months. Now in May 2019 I’m being told I have both, but the current antibodies that are elevated right now are Graves antibodies. They want me to remove my thyroid. My tsh is <0.0001 my t4 is 10.0. I have had a goiter since 2005. I have a lot of nodules, 2 big ones and lots of little ones.

My wedding is in July, and the thought of walking down the isle without a goiter is very tempting.

[Erin60 in reply to Belle_architect]

I can imagine the temptation. It is so l g overdue to have new treatments for Graves’ disease treatment for it always causing another illness.

Hope you have a lovely wedding.

[Belle_architect in reply to Erin60]

Thanks! It’s happening July 13! Can’t wait. Update is I feel fine. I don’t have such painful muscles anymore, but I’m still on propranolol. Can’t get an accurate conversation with the doctor because I can’t get a scan of my thyroid. I tried making the appointment but availability is in like 2 weeks. I leave for honeymoon July 14 and won’t be back til August, at which point I’ll have lost my insurance and have to wait about 30 days to be accepted into my future husband plan...I’m just gonna worry about having fun at the beach, with a cocktail in hand.

[Greengrass21]

No, they tried for 2 years and then said if it goes into remission it won’t be permanent and it’s just putting off the inevitable 🤷‍♀️

[Erin60 in reply to Greengrass21]

Really. How bizarre that I was told it was 50/50 whether after 18 months of ptu 50 go into remission permanently.

I thought I was just unlucky.

Maybe will have to have another conversation with endocrine in July.

[Greengrass21 in reply to Erin60]

This was nearly 30 years ago 😊

[Sheryl5013]

Hi Erin

I was first diagnosed with Graves back in 2013.

I've had two remissions the first after 18 months with only being on carb for 7 months and the second after 13 months after being on carb for 9 months.By endo also thinks that after 2 remissions I'm putting off the inevitable but has let me stay on a maintenance dose of carb 5mg every other day which will be coming up to 2 years in October.So far so good but I don't want to count my chickens yet.The debate is out on long term dosing and obviously it doesn't work for anyone but I always felt I wasn't kept on carb long enough in the first place so fingers crossed 🤞

Good luck with whatever choices you make. X

[Erin60]

Hi Sheryl,

Thanks for your reply. I would be very interested to hear what happens after October and my fingers are crossed for you that your 2 year low dose will have been successful.