Doing it your own way.

[Ruane]

I can't believe how many people have hyperthyroid. Has there been a steep increase or is it something that people suffer and haven't had a voice before?

I was diagnosed earlier this year and I have Graves. I am on Carbimazole but I played around with the dose because of the side effects . I got myself an accurate pill cutter, and I told my Endo what I was doing. I found I couldn't tolerate 40mg so decided some medication was better than none and I slowly worked my way up to 25mg/15mg alternate days and that has worked for me. My Endo was pleased with my bloods last time I saw him and I can reduce down a bit more.

The reason I took matters into my own hands is simply I know my body. It is difficult for the Endo who has to generalise treatment and sees so many people that, with the best will in the world, we become just another case to be dealt with.

I'm not saying my approach would work for everyone but it has made me feel more in control of my condition.

[shaws]

I am glad you are feeling much better by taking things into your own hands.

If you use the search button you will see we've had quite a few queries about hyperthyroidism (Graves).

I believe that if hyper or hypo we should be able to put more input into how we are treated/diagnosed. Many people remain untreated with hypo even though they have disabling symptoms. It is hormones we're dealing with and you are correct in that we know best if the prescribed meds are making us better or not.

Hypothyroid members would like more freedom too as we are dealing with hormones and many patients aren't allowed an increase to relieve their disabling symptoms or dose is decreased when it shouldn't be.

Are dysfunctions of the thyroid gland the poor relation with regard to autoimmune conditions?

Many who join this forum are woefully neglected with doctors not seemingly knowledgeable about how to treat us and doses are restricted to keep us 'in range' when we need a very low TSH of 1 or lower once diagnosed.

Earlier today a member posted that her doctor has told her she will not have dose increased, despite her near 'top of the range' to be diagnosed but worst of all her disabling symptoms cannot be relieved.

Patients should have more input into our prescriptions as you say, we know our bodies, better than anyone else.

[Rmichelle]

Hi there i was diagnosed back in july and have hashis and accordinging to my endo have graves too but thats debatable being he has not done tsi test but thats another post. Ha. But i only thought the other day alot more hypers are posting now!

I originally started on 20mgs in july and stayed on it till october as waited for endo app then october started on a 10mg dose but decided then to drop to 7.5mgs other day as got fed up with waiting for endo to call. He called today to say drop meds to see how i get along with 5mgs, so i am goin to get bloods done again first then start 5 mgs.

I am probably doing wrong but i cut my tablets with a pair of sharp scissors as i have found this more effective than i knife. I imagine it is alot of fiddling around finding right dosage. How long has it taken you to find correct dosage and how long in between did you leave it to change your dose again?(2weeks maybe).😊x

[SmallBlueThing]

I've had hyper flares but only two were diagnosed by testing. Earlier (pre-Internet and Dr Google), visits to my GP were few and far between, and blood testing still seems a bit new-fangled to me. I stopped wearing poly-cotton and woollen clothing and sawed vent holes in doors!

My GP has said I get all the odd side effects, and we now only make one change at a time, with dosing or changing a drug. In my case, it's wise to commence a new drug with a quarter of the final expected dose. One of the box labels now states 1.5 tablets per day (which I found more tolerable than two), but I have to do the cutting myself.

[Rmichelle in reply to SmallBlueThing]

Hi there 1.5 tablets per day does thst mean 1 and a half tablets a day? Sorry its me being abit slow!😊

[SmallBlueThing in reply to Rmichelle]

Yes!

[humanbean]

I'm only guessing here, but my suspicion would be that more and more doctors are attributing symptoms of all sorts to depression and anxiety. They've always done this, but lack of money is probably making this even more common than it was.

[VintageChick]

I also do my own thing. After becoming very hypo on a high dose of Carbimazole I've gradually worked my way down and have found that 5mg is optimal for me. I get the tablets in 5mg form so not cutting or messing about! One tablet a day and I'm golden! I discussed it initially with my GP and she said as long as my bloods were ok and I felt well then it was up to me. I'm lucky to have a GP who listens!

[Rmichelle in reply to VintageChick]

Hi there vintagechick i like the wording im golden- i feel far from golden at the moment, still early days eith fimding a good titration dose im doing 7.5 mgs moment 5mg in morning and 2.5 in evening. I dont think that is working so endo called yesterday to say 5mgs. I also have 5mg dose single tablet but just debatting on cutting it in half to x2 2.5 a day or just one dose. Em?😊

[VintageChick]

I've never gone lower than 5mg as seems to be ok for me. Had my visit with the endo today and she knows I don't want RAI so happy fo rme to stay on 5mg as long as my bloods are ok. We'll see...