Has anyone left their overactive thyroid untreated...?

[JemimaPyjamas]

I was diagnosed with hyperthyroidism roughly two years ago and was told to take 20mg of carbimazole daily. Six weeks later I was a stone heavier so stopped. I was also very constipated. My concerns over weight were dismissed as regaining the weight lost due to the overactive thyroid, which wasn't the case (I could even prove this as I had print outs of my gradual weight loss showing it was painfully slow!)

My thyroid is now acting up again and I have been told to take the same dose and my concerns of weight gain dismissed (I think it doesn't help that I find the endocrinologist hard work, I originally went to see her as I am a Type 1 diabetic.)

The weight from last time did not come off easily, being on insulin also doesn't help in that respect and nor does my age (45). I also, currently, have no symptoms. I am also at the top of the normal weight range, despite eating reasonably well and also walking in excess of 60 miles a week (I look after dogs and also have no car!)

If I developed severe and / or distressing symptoms I would obviously reconsider taking the drugs but at the moment the anti thyroid drugs seem to be a way of solving one problem but then creating others.

Please don't leave it untreated, it's a really dangerous disease. Your heart can be affected so it's potentially fatal.
In my experience the dose of carbimazole is usually reduced once your blood results are back within normal range and any symptoms are under control. I've been taking a maintenance dose of 5mg for years now. Perhaps you were slightly over medicated and went from being hyper to hypo thyroid last time - it can take a while to get the balance right.

Sorry OP .... to be very blunt .... you’re an idiot.
Leaving this condition untreated can be fatal ... it is an autoimmune condition ... hence why ALL prescriptions are free for the rest of your life - any medical condition can affect your thyroid condition. Why you would play with your life like this is beyond me.

It sounds as though your carbimazole dose maybe wasn't reduced quickly enough so that your thyroid ended up being underactive. I feel more or less OK with an overactive thyroid, but felt absolutely dreadful when I first started taking carbimazole. I couldn't handle the abrupt change in thyroid function at all. I was put on block and replace instead, so as soon as my t4 levels were within the normal range I was given thyroxine to replace the thyroid function that was being blocked by the carbimazole. This is not the standard treatment AFAIK, so I was lucky to find an endocrinologist who was willing to try something else.

If you've had two episodes then presumably you will now need to have either radioactive iodine treatment or surgical removal of your thyroid?

Diagnosed with Graves disease in Feb 2018. HR at rest was 163 and felt awful. Put on 40mg of carbimazole for 4 weeks and gradually reduced. Now on 2.5mg 5 times a week and due to stop in August to see if I'm in remission. It's important to get TrAb tested to ensure they are going down. If antibodies are still there then Graves is still present. I was one of the lucky ones where carbimazole didn't affect my weight however I know people who have put on. It isn't something to be messed with and I strongly advise seeing your endo again.

Thanks for the replies.

@Reallybadidea @MsDFye I agree that the levels at first must have been too high, but the endo I spoke to insisted that I had to start on the dose she had decided on, 20mg. When this was the situation last time, the same dose, I gained over a stone which is also bad for hearts and so many other things, hence my concerns - and this was only over a month! I have suggested being more open to a lower dose but she dismissed that as 'pointless.' (As I said in the OP, I didn't find her particularly easy to discuss things with.)

My friend had exactly the same, she left it as the weight loss was a bonus, she was so close to having a heart attack that she had to stay in hospital. She didnt even feel poorly. Dont do it

I have had no weight loss unfortunately! I think this is what is winding me up about the endo dr, she seems fixated on the reason I don't want to take the drugs is due to the convenient weight loss but its not - I am just concerned about the dramatic amount of weight I suddenly gained last time (as that too isn't healthy in the least!)

My mum left it untreated - she didn’t know she had it. It caused atrial fibrillation >>> emboli >>> stroke.

I had massive problems taking carbimazole too, but in the end I just felt so dreadful mentally and physically and now I’m so glad it’s under control and everything is normal again. We did it zap it with radioactive iodine but my thyroid is indestructible!

liverprobs is mistaken tho, no free prescriptions for Graves unless or until your thyroid becomes under active :(

Try PTU instead it's also for graves disease

Propylthiouracil g.co/kgs/C66Y61

I've had graves for over 20 years mine was so high they started me on 80mg carbimazole once they call me stormy

I had it for about a month was put on meds then I stopped taking them without consent from doc and it has gone away hasn't been back since but keeping an eye on it. I would recommend getting it treated as it's really bad for your heart more so than the weight gain.

I get free prescriptions regardless, that’s not an issue.

@slipperywhensparticus i’ll have a look at that alternative drug, thank you

I didn’t take the carbimaxole

I did a lot of research and changed my diet and lifestyle but I beleive that only worked for me as my hyperthyroidism was triggered by extreme stress

I lost weight in the short term but it stabilised once i got things on track

I got pregnant shortly after that and I was closely monitored because of the hyperthyroidism and I had clear results all the way through and after

I've had Graves Disease. Please don't leave hyperthyroidism untreated OP.

My apologies aya ..... my point still stands though ... do NOT leave this untreated ...

Hope you get sorted OP.