Well, today I have "officially" been diagnosed with Graves Disease by the nice lady to UCLH. Latest blood test is worst than last time.... TSH, as usual, is nowhere to be found, T4 is now 40 (up from 31) and thyroid antibodies are now 193 (up from 170-something last time).
Anyway, I have been taking the propranolol to mask the cardiovascular effects of being hyperthyroid, but the endo wants me to take carbimazole to knock out my thyroid or at least cut it down to size a bit.
I am loathe to take new drugs; I don't know why but I hate having to be medicated to feel normal. Endo wanted me to start out at 45mg per day and adjust down if necessary, but it makes more sense to me to start LOW and titrate HIGHER if needed.
Any other hypers out there who can share what starting carbimazole was like? Did you feel magnificently better at once?
Thanks
Hi I am hyper and have been taking carbimazole for nigh on 18 months.
Firstly if your TSH is still rising then you need carbimazole. Loads of people come on here and ask if they really need to take it. Simple answer is "yes". Carbimazole is an antithyroid and it basically cuts down on the production of thyroxine by the thyroid. The way that carb works is to take a high dose and then cut down as the thyroid gets under control. It is the complete opposite of levo for hypo/underactives.
No you wont feel better at once. It took me months to feel slightly improved. It will however help with palpitations, sweating and over heating, anxiety and other problems. It will not stop tiredness but may help you sleep a bit better. You may put on weight, feel starving, have acne, thinning hair and joint pain plus other issues. However it is not really a choice.
Any other questions just get in touch. It is a miserable condition but it does help to talk to people.
Sorry meant to say T4 not TSH oops eejit time!!
Hello Greenginger,
I have a question - I'm French but treated in the UK, sorry for my English mistakes if any. I was diagnosed with an over-active thyroid in mid-September - T4 at 34 - and put on Carbi 15mg as my resting heart rate was at 95-100, not fast enough to be a source of concern.
2 months later, my T4 were at 13, THS suppressed, but signs of hypo: my endo cut to 10mg. Mid-December, T4 at 14, THS back at 1.3, my endo cut at 5mg. My next blood test is next week and I feel hypo again. My uptake scan shows I have Graves.
5mg is a very low dose which is a source of concern for me: how am I going to be able to take Carbi for 12-18 months, by taking 2.5mg every 3 days for example? How low did you get before being taken off Carbi? Thanks a lot!
Hi I have been on carbi since May 2011 so expecting to come off anytime.
My TSH is now at 3 and my T4 is around 12. I have been taking 5 mg for about a year and have felt increasingly better. I would not worry about being on a low dose as long as your levels are ok.
Sometimes you may feel hypo but it is possible to have similar problems whilst either hypo or hyper. Hope you feel ok.
I'm exactly like you said: sometimes perfectly fine, sometimes a little bit depressed, sometimes the anxieties come back a little.
Yep i find I am more hyper at that time of the month. Its like PMT but evil!!
Hi green ginger . Thanks for sharing. I am glad to know that the carb has been working for you. My daughter's count was so dangerously high that we started her on 30 mg daily and had to increase to 50 just to stabilize but side effects of swollen body that is eyes hands lips fingers etc and constant itching had us stopping without permission just to get relief. None came as the itching and swelling came still. I believe the body is rejecting the drug. Will ave to see endo for that. So did you have any side effects from taking the drug? Thank you
Hi, I have Graves and have been on carbimazole for 8 years... everytime I become euthyroid and come off the drugs I go hyper again... my immune system seems to be getting worse as I have a ridiculous amount of sore throats and colds and chills and I am thinking about a thyroidectomy, doctor says this is a bit extreme but I am so fed up with feeling ill
I was on Carbimazole for 12 months only. It was stopped 2 months ago, I'm euthyroid for now. My experience of Carbimazole was awful: it was fine the first 6 months - with only 5mg - then I started to have major mood swings. In the end, it was worse than my period of hyperthyroidism as I had very little hyperthyroidism symptoms.
i am being put on this medication and would like to know wot are the chances of me and my partner being able to have a baby
Dear nickloir. 27 years ago I was placed on neo mercazole for a hyper thyroid. The doc said no babies while on the drug as it could affect the child. I got pregnant and the symptoms disappeared! Have been free and clean still. Baby or rather big man is fine and healthy. Speak to your doc and hear what he has to say.
hi ,
Im new here,
I have a overactive thyroid for about a 3 month now and I was at the beginning on 20mg carb now i am on 10mg and question as I runs out of the tablet and had a prestcription but I didn't go to pharmacy to collect new ones for last 5 days as haven't had chance, today i started shenking my hand and feel dizzy and went straight away to pharmacy for tablet carb, and took 2 dose, what could happend to me after I simply keep forgeting to take the tablet which i suposed to take them 10mg everyday?
There is a choice. Don't take the poison that hurts the body, learn about natural health.... healing the body. You think you can abuse your body for decades with normal "living" and it won't break? I have hyperth. and I know why [it is psychosomatic.... emotional] and will fix it or die trying, with food as my medicine. Poisoning or cutting out body organs because they don't work is retarded.
So what's your plan? I've been trawling through these forums to find people who are treating/have treated Graves' with holistic medicine. I've been diagnosed for 1 week on carbinazole and propranolol for 1 week and have my first sore throat. I'm absolutely devastated about taking this medication. I've been sugar, gluten, alcohol and caffeine free since diagnosis and hoping to find success stories of people healing this away from conventional medicine.
Hi Jennifer. I had Graves about 10 years ago, really bad. Had to do the carbimazole briefly until I went to my herbalist who gave me a liquid herb mix called Buggleweed. No more drugs and this normalised my tests over a very short time. The Graves did return after 3 years due to lifestyle changes not being made - working 7 days etc, etc and a resentment factor in there as well! Back on the buggleweed and sorted very quickly. Have had no return of the Graves since, blood tests are normal, however I have been dealing with the side effects of carbimazole for the last 10 years - namely itching and LS (Lichen Schlerosus). Horrible side effects I can tell you! Diet has always been high on the priority list anyway so no great changes were needed there.
I would thoroughly recommend seeing a herbalist and asking about this particular herb, it is fantastic for this disease - my experience only of course. Good luck with it, there is an alternate way of dealing with it - as always!
By the way, anyone dealing with Thyroid eye disease (and I had this real bad as well) could check out Goji Berry juice - returned my eyes to almost normal within 48 hours! Amazing stuff.
Hi I'm on carbimazole but I have ran out I'm away on holiday for a week what side effects could I have with not taking my medication