I'm new here and diagnosed for the 2nd time with Graves.

[niciannette]

Does anybody have any advice for Graves disease medication? I was diagnosed 3 years ago, took 2 years worth of meds, stopped for a year (doctors orders) and my bloods have just shown that my thyroid has gone hyper again. I had my bloods done this week because all the symptoms have also come back .. trembling, heat sensitive, BIG hair loss, aching, palpitations ....

I really didn't like the meds I was on last time, I felt SO sluggish and obviously I put on a lot of weight. I'd just like to if anybody has had a good experience with Graves medication? I'd like to know if anybody can tell me the name of effective drugs.

Thank you,

Niki

[kjzaw]

Hi Niciannette I've just been diagnosed with Graves Disease - a side effect of treatment I had for MS. Sorry you are dealing with it again. Very interested to know about treatments too. I'm on 40g carbimazole and PPL for my heart. Don't feel great. Don't want to put on weight! Any advice?

[niciannette in reply to kjzaw]

Hi, I only have an appointment in 10 days to see a thyroid specialist (I live in France at the moment so it's not my GP who will prescribe me the meds) so I'm not taking any medication at all yet.

How long have you been on your treatment?

I'll keep you informed as soon as I get started on drugs, the name, dosage and effects.

As far as putting weight on... I feel like it's kind of inevitable? Like I said I had Graves a couple of years ago and I lost a lot of weight before meds then I put all the weight back on and more!! This time I am going to try to control it better ...???

[Clutter]

Welcome to the forum, Niciannette.

Carbimazole is the first line anti-thyroid drug but Propylthiouracil (PTU) is the second line drug used for pregnant women and patients allergic to Carbimazole. PTU can raise live enzymes which is why is a second line anti-thyroid drug.

If you felt sluggish you may have been on too high a dose.

[niciannette in reply to Clutter]

Thanks for your reply.

I live in France at the moment. Like I mentioned in my first post I had Graves before, I can't remember the name of the drugs I was on .... no doubt I'll be back on them in a couple of weeks (they were little red tablets) so I'm really interested to see if the medication and dosage is the same here (France) to that in the UK.

I will definitely try to be more in control of my dosage this time. I feel like my doctor was totally in control when I last had it and I didn't really get a say.

Thanks again for your advice

Niki

[Clutter in reply to niciannette]

Niciannette,

The dose will vary according to thyroid levels. You should have regular blood tests so that dose can be titrated according to your levels to avoid hypothyroidism. If you post your thyroid results and ranges members will advise whether you appear to be becoming hypothyroid.

[purple64]

I was diagnosed about 6 weeks ago. Have been on 30mcg of Carbimazole for about 3 weeks due to email from hospital to gp. Not all the symptoms have gone as its too early but weight loss has slowed down, no hair loss as yet! Can't get endo appointment until September 141 days waiting list apparently!