Share your experiences of carbimazole, please?

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.

HI thanks for that. My TSH is not rising - no one has seen it at all (too low to be detectable) since the first time I was tested in the summer.

Joint pain I really don't need as I already have it in spades due to widespread osteoarthritis.

My most obvious effect from the Graves in cardio and the propanolol is helping with that. I am perpetually overheated, but that has been that case since menopause 7-8 years ago, so I am sorta used to being a sweaty betty, I don't have sleep problems either; if anything I am sleeping more, not less. All my adult life I have been 6-7 hours a night and suddenly I can sleep until 10AM! Weird. I am also pretty short tempered at the moment, but not sure I can blame that on the Graves.

Hi

I have been on Carbimazole since January 2012 before that I was on PTU. I did really well on the PTU no side affects nothing. I only seem to be able to tolerate 10mg although my Endo wants me to take 30. 20mgs and over seem to knock me out so I split the difference and took 15. I have also been taking L Carnitne, Bugleweed Vit D Selenium Vit B and Vit D3.

I actually for the first time in a year feel amazingly well I don't know what my bloods say and to be honest I don't care I feel great. I am not sleeping all the time or any of the other symptoms that I have had including joint pains.

I have been really stubborn though as I have an Endo who wants me to have either the RAI or a thyroidectomy but as she cannot give me a good reason I have dug my heals in and refused.

You need to do lots of research and find out what suits you. It is very much trial and error what I would say is though it is better to start higher and come down than start low and work up.

It is your body and you will soon discover what helps and what doesn't.

Good luck

Elayne

Hi, I completely understand you not wanting to take these tablets, its a serious decision but I urge you to read more on Graves and its effects. I went undiagnosed for 20 or more years and it all but distroyed my life. I believe that the earlier it is treated the better.

I was told constantly that it was stress. It is said that stress is a contributer to Graves. I have read that some people have managed to get their Graves under control by eleminating some the stresses in their lives.

Most of the symptoms you mention can be caused by Graves like osteoporosis, early menopause and certainly famous for rage/anger. Graves presents as menopause with extra heart rate But unfortunately there are many more associated problems one of which it Graves eye disease and although not everyone who Graves Thyroid gets Graves eye disease no one really knows why. I have Graves eye disease but it didn't show until the years and years of untreated Graves Thyroid.

For me it was perhaps way too late in the day for any pills to help and so I had my thyroid removed but a friend got diagnosed early and she took the pills for around 9 months and has not looked back and that's been 7 years. It was her that diagnosed me!

This site is invaluable and although there are less with Graves, there are plenty with great knowledge. Wish I had found it years ago.

I wish you well.

Hi debbie joyce, I feel for you. It's still very fresh in my mind the dreadful thought of should I or shouldn't have the operation and can I or my family take much more?

I got almost immediate relief after my operation and felt fantastic for about 6 months then I started feeling hyper again. Seen some not very good Endo's and then found this site and I believe I've got my meds right for now, topped up with all the necessary vitamins.

I had a good surgeon who told me that recovery would be around 2 years which when first said I nearly fell off my chair but he expertly explained that I would be up and around in a few days but it would take a while for to find and settle on the right amount of thyroxine. He was right.

I've spent so long feeling abnormal that I don't really know what normal is. But I reckon I feel pretty normal most days. Still get a rush of rage every now and then and I get so mad at myself for having it.

I'm work in progress but it's good progress.

I was diagnosed with hyperthyroidism in September and with Graves' disease about a month ago. If I've learnt one thing it's listen to you body- I started on 30mg of Carbimazole and that took me very quickly down and then crashing through to hypo. I left it too long to tell my GP and battled on and it was utterly wretched. I took myself down to 5mg and my gp agreed but then I saw the endo for the first time and he said I was cured. It was a miracle!! he took me off completely. I had a radioactive scan and a couple of weeks later the endo called and said he was wrong and that I had Graves' disease. Had my symptoms returned? er, hell yeah. I was back to square one. I'm now on 10mg and it has taken a few weeks to get back to 'normal'. I still feel a little bit fragile so listen carefully to your body, review the changes you're experiencing and then adjust the dosage- with the support and advice of your GP-accordingly. Good luck.

As far as my knowledge goes, Grave’s will not fix itself – if you take the anti-thyroid drugs and all goes well then you should be able to come off them in around 12 to 18 months and go into remission, it didn’t work as easily as that for me, but my friend was put on carblimizole for 18 months and then came off them and 16 years later he is still completely fine.

The idea is to start on a high dose to bring you down quickly to get you out of the danger zone (this can make people feel pretty shitty as the transition from being hyper to ‘normal’ zaps you and you sometimes don't realise how hyper you were until you are brought down) and then to keep you on a maintenance dose until you are stable enough to come off them.

I know when I first was diagnosed and read things on the internet it didn’t seem all that bad, but if you have graves and don’t get treated it can become life threatening. There is no quick answer, it takes time to treat.

Other tips:

If you smoke then stop

As you have autoimmune thyroid it might be an idea to stop eating gluten/ soy

Test for vitamin D and iron as these can all effect how thyroid works

I take selenium although some people don’t think this helps

Take vitamin C for your immune system

Do as much as you can to eliminate stress from your life (easier said than done!)

See the same specialist each time – not just a member of their team

Keep track of your results (including your FT3 levels)

I think Carbi will help you - it has helped me. I also take Bugleweed. You might find the work of Dr Eric Osansky (diagnosed with Graves and helped himself with natural supplements) of help. If the thyroid is hyper and running fast...I can only strongly recommend you stop it....and Carbi will do that. And, if you find a higher dose of Carbi is not correct for you because of side effects, then you can try a lower dose. It will take some time to get the thyroid balanced again depending on your own individual case of course.

I too don't like 'taking meds' - however sometimes you have to do what is best for your body.

Take care.

i was overactive with some awful systoms and put on carbi as a first option to get thing under control.This was some 6/7 years back and it did have some effect over a 12/18 month period however it did not get my function back to normal by way of a solution long term and I ended up having radio-iodine treatment no once but three times.I am currently on 75mcg thyroxine. but carbi is ok but i understand not a long term solution.

I have both antibodies and was originally on thyroxine. Then I moved abroad just under two years ago and within a few weeks became hyperthyroid. I stopped my thyroxine and was admitted to hospital with severe thyrotoxicosis (T4 was 63!). An experience I would not wish on anyone. I was put on carbimazole. Since then my dose has varied from 60mg to 5mg. I just couldn't stabilise and felt so ill I returned to the UK.. Finally, I had a total thyroidectomy in December 2012. At this point I was taking 40mg which kept me hypothyroid for the weeks running up to surgery.

Obviously my thyroid symptoms alone were enough to contend with but the carbomazole also had some very unpleasant effects. Nausea, hair loss, swollen hands and face, itchy skin and a flu like feeling. All these stopped as soon as I stopped taking it. However, there is no way I couldn't have taken it. My decision to have my thyroid removed was the best I could have made for my situation. Although I'm still working toward right doses etc I already feel so much better.

A private doc put me on echinacea, goldenseal and milk thistle to help liver and rid body of toxins. I don't know if anyone else has tried these or how much they helped but I was willing to try anything that might help my body cope with the drugs.

When I was first diagnosed with Graves (I have TED) I felt fine. I would get hot flushes and some other things but in general felt okay, so I refused the carbimazole. My levels kept going up and my TSH was suppressed.

Then I had an episode, which lasted for weeks. My heart would pound out of my chest ALL night. I couldn't eat, sleep or function at all due to crippling anxiety and panic attacks. I couldn't leave the house due to chronic anxiety. I lost loads of weight as I couldn't eat. I could only cope on small sips of diet milk shake drinks.

Then I was hit with the darkest depression that sucked all the joy out of my life. I couldn't see the point of living if it was to be like this.

It took two weeks for the higher level of carbimazole to kick in and I got my life back. It took far more time to feel normal again. I sought out a nutritionist, she told me to cut out gluten, which I have and feel so much better for it. I went to a hypnotherapist to try and sort out triggers for anxiety. Basically I did anything I could think of to get better.

I would rather die than feel that bad again. The carbimazole gave me my life back. I have been on it for over a year now. My levels are not stable yet thought, which is frustrating. But I feel great. I have more energy now, I can walk the dogs and ride my horse in the same day without having to recover for days afterwards. I sleep well. I do however, have to watch out for stress, as that can fell me far quicker than anything else. I can no longer tolerate it and it makes me feel like a bit of a wimp, but there is nothing I can do about it.

I feel fine on the carbimazole. I do get mild sore throats every other day or so, which I worry is due to the carbimazole. But I do not get any other side effects. Whether that will change with time, I hope not.

I would have dearly loved to have avoided having to take medication, and I was find for ages. Then the Graves hit me and hit me hard. If I have to take carbimazole to avoid the horrible symptoms of this disease, then take it I will. Religiously.

As everyone else has said really, I've been on a year due to Graves diagnosis and while the first few months on it were even worse than I started with it is helping and I can pretty much function again. For a long time I ignored the symptoms and I would have fought a teabag if it looked at me funny, I felt totally out of control of anything my body was doing and thought I was having a breakdown as I was a sweating, hateful, trembling shell of myself who couldnt cope with anything yet wanted to fight the world.

Im not saying its easy but in the end it gives you a life back, I only wish I'd been put on it years ago

My experience of carbimazole:

>It took away my terrible symptoms.

>Lost some hair (approx 20%).

>Recently after being on it for 1 year I had a reaction and my white and red blood cells dramatically dropped below normal level and GP took me off the drug. Symptoms of there being a problem were: cold sores on my lower lip, lots of spots on face and back, then flu and finally a chest infection.

I want to go back on the drug again as soon as the GP gives me the all clear to do so when bloods look better. Life pre-carbimazole was intolerable for me. I hate the fact I have to take a drug daily but sometimes our bodies need a helping hand now and then.

Good luck with whatever decision you make.

Hi there,

I got diagnosed with Graves' on Jan 8th. Have been taking 10 Carbimazole tablets ever since. I found a massive bruise on my thigh/leg/bottom area last Sunday. It was 5x5cm and dark purple. It didn't really hurt and has faded really fast. I've just read that having a bruise is a very serious symptom. Should I go to the hospital or can I wait until the morning when I can ring my doctor? Please help!

Hi!

I know I'm late to reply to this thread but I think all thyroid patients (hypo and hyper) should have their vitamin B12, Folate and Ferritin (iron store) levels checked regularly.

I was diagnosed with Graves Disease last August and started taking 15mg of carbimazole. I am currently down to a dose of 5mg. I did go hypo which made me very ill, but with adjustments in my dosage my thyroid is all in the normal range now.

However I was still experiencing a lot of symptoms and was sure it was my B12 which I had been treated for in 2006 but nothing since (should of been having maintenance jabs for life). My B12 was low normal, around 300, so every doctor I saw kept telling me I was fine. My Folate was very low. Luckily I have private medical cover and my Endo agreed to do an MMA test which was elevated indicating a diagnosis of B12 deficiency. I still don't know if I have classic Pernicious Anaemia, although probably yes as it is an autoimmune condition linked with Graves Disease and I tested positive for gastric parietal cell antibodies.

Check out the Pernicious Anaemia Society website, it has a B12 deficiency symptom checklist which you will see is very similar to thyroid symptoms. I mention Ferritin above as some studies have shown that this can fluctuate alongside your T4 level, so when you are treated for hyperthyroidism and your T4 drops, your Ferritin can drop as well leading to iron anaemia.

So I would say to anyone who is still feeling lousy even though their thyroid is apparently under control, get the above things checked out by your doctor. I'm not a medical person, it's just something that happened to me and I think more thyroid patients need to be made aware of it.

With regards to personal experiences of carbimazole, when I went hypo I stopped taking it for 1 week and my T4 flew back up, I felt so awful it's not an experience I want to repeat in a hurry! So I will happily take my 5mg for the time being and hope with fingers crossed for remission at some point in the future.

Meant to also say that anyone who has had surgery with the anaesthetic Nitrous Oxide is at risk of a B12 deficiency, as it inactivates your stores of B12. A healthy person will replenish this quickly through diet, but someone with an underlying B12 absorption issue won't.

Hi,

What a great site! I am in Australia. I have had really high levels & didn't know. Just thought I was anaemic. I have been on Carbi (as one poster put it!) 15 - 20mg since the end of February. Since early March, I have had violent vomiting attacks that have laid me up for two days or more at a time (seriously eating into my sick leave). My GP (in his kind wisdom) tells me this is a newly formed migrane (I expressed the emphasis on violent vomiting). My Endo (sweet, kind man he is) had a concerned look & was worried that for the three times across six weeks I was sick (total of six days), he thought I was not getting my meds. So, he increased my dose to 10mg twice a day. Now, I am still suffering from violent vomiting. My levels have not reduced, in fact have gone up from the initial 15% drop to a <10% drop from >40 & >19 (T4, T3). I don't know what to do. I spent Mothers Day in bed vomiting while my children dashed in with presents (they have all been SO good). What a journey. ANY SUGGESTIONS MOST GRATEFULLY ACCEPTED!! Thanks, and enjoy a wonderful day.

Hi Louise,

Good idea. Have followed through on this & there are no answers. It doesn't seem to feature anywhere - my GP & Endo are miffed, but I will find an answer. I think Grave's Disease has some symptoms of making me determined (in a ratty kind of way). I am so sick of being sick!

X, S

I was prescribed Carbimazole in Jan 2011 after taking them for 4 weeks started getting stomach ache, i told my thyroid consultant about it and she dismissed that it was the Carbimazole, i researched the side effects and found this -

Vasculitis associated with anti-neutrophil cytoplasmic antibodies has been reported in patients treated with anti-thyroid drugs and especially propylthiouracil. We report here a case of granulomatous eosinophilic vasculitis mimicking gastric neoplasm and peripheral eosinophilia in a 27-year-old man who was treated with carbimazole for 5 months for Graves’ disease. Clinical and morphologic features resolved within 2 months after stopping the drug, suggesting a causative role for the drug. To our knowledge, this is the first biopsy-proven granulomatous eosinophilic vasculitis associated with this drug.

I told this to my thyroid consultant and my GP, They told me not to read stuff off the Net, by July i was being prescribed sachets of Movicol, box after box, in November i saw a Locum GP i told him about the potential side effects of Carbimazole, he just ignored me and prescribed Omeprazole, On the 17th Dec i was rushed in Hospital with servere abdominal pains given ultra sound scans and discharged 2 days later, on the 26th Dec i was rushed in again, this time they gave me a MIR scan on the fourth of Jan 2012 I was given an operation, they took 2/3rds of my bowel away and gave me an illiostomy, the surgeon told me and the rest of my Family that they had taken a Tumour out and that i would more than likely need radio therapy for Cancer, I was discharged on the 21st Jan, Then 2 weeks later a District Nurse told me that it was not a Tumour after all. and said that it was just irritable bowel, the truth is that it was caused by Carbimazole. all the way through this i had told the Doctors and Consultants about the possible side effects and none of them listened. So if any of you get Stomach problems after starting Carbimazole make sure your Doctor reads this.

onlinelibrary.wiley.com/doi...

Good day. I am glad I stumbled on this forum after having sleepless nights. The experiene I am relating is that of my daughter. We found out that she was hyper at age 13. I was devastated. My mom had it, I had it, my sister had it but we all did much older than 13. My mom and I miraculously was healed! It just went away for me after a couple of years. My sister did the radiation. I was hoping for a healing for my daughter too. We did the neo mercazole and carbimazole. Horrible side effects. Swollen body!! It was suggested by the endocrinologist that her only option is radiation. We were shying away from putting her through that experience although it seems to be a short process but the thought of tabs for the rest of her life is frightening. She is now 19.

We have stopped her taking the drug and will do a blood test just to see if it was worth taking the carbimazole. Guess not as she has scratch marks all over her body firm the rash and itches. Has anyone experienced rashes and welts from taking this med? Anyone did the radiation surgery and can give your experience then and now? Would appreciate it. Thanks

So. I got diagnosed with Graves Disease when I was 13. I had to take 6 pills of carbimisole per night, sometimes I got really bad migraines, e.g I was walking to school one day and I couldn't see anything, my friend walked up to me saying my name and I had no idea who she was, she then walked me to school, I felt like I was going to faint, then I lost my memory (it came back though) I then went to the doctors and they gave me migraine tablets and I was fine after that. That only happened twice and apart from that I have been fab! They are really good to take because theyre so small, so I can take 6 at a time (: they don't make much of a difference to me, they have been very good(: but if you are taking them and you get a sore throat then call a doctor immediately!! I'm getting sergery on my graves disease in a few weeks and I'm actually only 14 I just made an account to answer your question(: wish me luck, and good luck to you(:

hi ive just been diagnose with the same i take 5mg of the carbim once a day and 2x propran , i feel loads better but have really bad trouble sleeping and they did stop may propran and i was having massive palpitations so they put me back on them, and also they say you put weight on im losing weight. and it does make sense to start low as i think if i had started on a higher dose id of been ill im 44 ,nice to know what others are going through

I have been since 5th Nov. taking Carbimazole 30mg daily. at first I feel better, not so cranky and feel stronger. but two days ago I started to itch, especially at both hands and legs

now the third day of the itch which I cannot stand it

I am not sure if I should go to the doctor before my due appointment

it's next week

Hi I started on 10mg and T4 went down a bit after 4 weeks. Consultant increased to 20mg 6 weeks ago and I've just had more blood tests and seeing consultant today so hopefully will decrease my dose again as I have chosen to try and manage the disease with titrating the carbimazole. I haven't had any noticeable side effects from the carbimazole. I also take propranolol for fast heart beat and this has reduced from 127 initially to around 75-80 with the medication. I feel a little better but still not great, on a scale of 1-100 I am around 35 of being my normal self. It's a long haul I'm afraid. You do need to take the carbimazole in order to get your thyroid under control

Well having read all the notes about Carbimazole on line (not on HealthUnlocked) I am getting a bit confused!! I thought I had PMR and am taking Pred, just gone back to 15mg from 10mg as I thought I had a flare up. Following a recent blood test I have been diagnosed as having an Over Active Thyroid and put on 20mg Carbimazole. Many of the symtems are similar to PMR so do I have PMR and THYROID at the same time ? Also the notes on Carbimazole state no Steroids - I am also Diabetic type 2 !! Anybody else had similar problems and being a MALE Patient my wife says I am always confused.

hi. i have just relapsed with hyperthyroidism for the third time. i have been treated previously with both high and low doses of carbimazole snd propranolol. my last episode was 2015.

i was offered RAI last time but due to personal circs did not go for it.

meds were enough to get me back to more normal levels.i had minimal side effects from either carb or propranolol.

then 4 weeks ago noted return of the heavy swollen legs, palps,anxiety and feeling like i was wading through mud with a pulse like id just ran a marathon 130 resting!

gp on it straight away. levels so high sent to a and e. lucky endocrine cons on call! back on 20mgs carb and 80 propranolol. not noticed much change to heart rate etc yet but swelling def better.

this time it all seems so much harder and i cant see an end to it without RAI or surgery which i dont want.

any tips on reducing the anxiety feelings more naturally?