Hyperthyroidism since 2009 any advise?

[Yuhall]

Before I was diagnosed I was a fitness enthusiast and looked great, lots of friends and had a great career. I woke up one day and felt like I’d been hit by a bus. I went to the Dr. and asked for a lab work up. It was determined to be hyperthyroidism and I was immediately placed on PTU and once I became consistent I stated feeling better and better. However I did not know about the depression, weight gain, and major loss of energy. I’ve been diagnosed as a major depressive and have gained lots of weight, and struggle with friends though I’ve gotten better with an AD. About a week ago started hearing my blood whooshing in my ear and feeling my hear feel as if it’s skipping a beat. Along with a horrible migraine for that lasted for 5 days until I said screw the docs advise I’m going to the ER, was given meds for dehydration. Still worried about effects PTU is having on me , cause I think I read once it can make you have a heart valve defect if prolonged. I’m afraid of rai or removal. But considering rai.

[Clutter]

RFU,

New evidence shows it is fine to be on Carbimazole for years as any adverse effects generally manifest during the first 90 days.

ncbi.nlm.nih.gov/pubmed/286...

[Fruitandnutcase in reply to Clutter]

I agree Clutter, I don’t know about PTU but I’ve heard of people on here who have been lucky enough to have been kept on Carbimazole for much longer than two years and should I relapse that is exactly what I would want to do. I saw my GP when I stopped my block and replace and went into remission and told her that and I wasn’t told it wasn’t possible.

[Clutter]

Welcome to the forum, Yuhall.

Can you post your recent thyroid results and ranges so we can see whether you may be overmedicated.

PTU is a second choice drug because it can raise liver enzymes but I assume you are checked for that? I've not heard that it causes heart valve defects.

In the UK members are usually weaned off anti-thyroid drugs after 12-18 months to try for remission. It may be worth trying for remission before agreeing to RAI which will make you hypothyroid.

[Yuhall]

My doc did not send my results by mail and I just found that he did not post online. I am changing docs asap, he is just not helpful. Wound up in the ER on same day I visited him and he couldn't tell I was dehydrated.

[Yuhall]

I don't think I will ever go on carbimazole because it sounds like a nightmare!!!

[Fruitandnutcase in reply to Yuhall]

No it’s not actually. I felt really well on it. I was treated with block and replace which is where you are given enough carbimazole or PTU to knock out your own thyroid production and then given levothyroxine to replace the thyrox8ne your body needs.

I had a sore throat twice, first time I had my white blood cells checked in case there was a problem - there’s wasnt, second time my doctors and I opted to ‘wait and see’ and sure enough there was no problem.

I took 40mcg a day of carbimazole for a year and felt really well on it. It wasn’t scary for me. I’d read all sorts of things about it and nothing horrible happened to me.

Like I say, should I relapse I would definitely want to go back on carbimazole for as long as I could. My nightmare would be having to have radio active iodine. I want to avoid that at all costs yet there are people out there who have had it and are fine whereas carbimazole was great for me and probably is for lots of other people.