I have ben told that Carbimazole is a drug that 'can' cause your white blood cell count to reduce and so long -term 'can' affect the immune system - causing the condition Agranulocytosis. It probably depends on a number of factors - how much you are taking on a daily basis/age/other health issues/how well you are generally. I have Graves disease and been on varying doses of Carbimazole for the last 18 months from 5 to 10 - 30 - 15 - and currently 20mg. I have been looking into this issue of effect on white blood cell count. My endocrinologist is now talking about surgery as they can't seem to get the thyroid to stabilise but I am going to resist this!.
From what I've read Agranulocytosis is a well-recognized but rare and life-threatening. side effect of carbimazole therapy, and 'usually' occurs within the first 3 months of treatment. It's a rare condition in which your bone marrow doesn’t make enough of a certain type of white cell, most often neutrophils (which make up the largest percentage of white blood cells in your body and are a critical part of your body’s immune system).
Having regular blood tests to check thyroid levels should mean that this is monitored, although whether they also check white blood cell count is another matter!
I would be interested in asking everyone who is taking Carbimazole how long they have been on the drug, and if long-term what doses are they are on, and what side effects they have.
Tags: #Carbimazole #Agranulocytosis #surgery
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Have you ever heard of Long term, low dose of MMI (carbimazol or other form of methimazole) - That method is quite safe and it has the opportunity that you can come into (a long term) remission. Just as you I have Graves' disease and I've been using MMI in a low dose from 2016. You just have to dare to go low on your FT4 and see if your TSH comes up, and then you can slowly lower the dose. But most doctors don't know how to apply the long term, low dose MMI and that's why they say that your thyroid is difficult to adjust.
Hi Dutch_Butterfly Thanks for your reply. Can you explain this in more detail? Are you using carbimazole or something else? Did you do this with after discussing with your endocrinologist? Thanks.
I mentioned the method to my endo. He said, it was not very well know, this method, but I was free to try. We call it "titration" in the Netherlands. I use methimazole (kind of the same drug as carbimazole) and the method is quite simple, but you have to know what you're doing. Carbimazole is a drug that put the brakes on the thyroid, right? So you're braking at first very strongly and according to your bloodwork you are going to brake less and less. It is very important when you do this, is that you can have your blood drawn every 3-4 weeks and also when you feel bad. At the moment I'm on 1,25mg methimazole a day. There's a very good article by dr Azizi: liebertpub.com/doi/10.1089/... and you can ask your doctor. We (in the Netherlands) have a forum on which people ask about the bloodwork and what dose we would advice.
I was diagnosed with Graves Disease January 2019 officially! after seeing the Endo. I have had Graves Disease for the past 3 years. It was recommended by the Endocrinologist to start on 10mg carbimazole from last year to which I did not take and this year again recommended to start 10mg carbimazole.
Well I got the carbimazole from the chemist is on my dressing table. For me I do not have severe symptoms, I feel well overall and like before not taking the carbimazole.
What I am taking for the past year is L-carnitine up to 1000mg per day, although I believe the dosage can be up to 3000 mg per day, I buy these from Holland and Barratt. In addition I have lots of other vitamins I alternate Vitamin D3, Magnesium, Biotin, Iron with vitamin C, Zinc, etc, today I bought Turmeric 600mg .
As for carbimazole I agree it is a toxic tablet some people take it for long time and they don't have any side effects and others do get the side effects.
My thyroid TSH is the lowest 0.01
and FT3 and FT4 are not within range these are higher than what should be.
After more than 3 years having Graves Disease my body is used to the low TSH and mid range FT3 and FT4 the body can make adjustments this is my thinking as I am not any worse than 3 years ago 2017.
Also TSH will be low even if you take carbimazole but there is a way of increasing TSH and this is by adding L-carnitine to carbimazole or Acetyl-L-carnitine, careful with Acetyl-L-carnitine when taken in conjunction with carbimazole it can make you Hypo very quickly, I know this from studies I have conducted.
Just a thought with coronavirus going on at the moment, I am even more reluctant to take any form of medication for thyroid as we are going through uncertain times and the hospitals are inundated.
Thank you for your very full and interesting reply. I am amazed that your Endocrinologist was so okay with you making decisions not to take the Carbimazole! Maybe your levels are not too off the normal scale? Do you have regular blood tests?
I have not heard of L-carnitine and will look into this, but will have to work out how much to take. I also take supplements - zinc and other vitamins and herbal tinctures, and Selenium for Thryroid Eye Disease. - and I think these help.
I just don't do what they give me, I have only seen the Endo's twice. The first one was over one year ago and this year just the once. I have the carbimazole tablets 10mg. I feel fine, so I am not taking the carbimazole. I was supposed to have a thyroid ultrasound scan but with the coronavirus all my appointments have been cancelled and really I do not think it is a good idea with coronavirus infections to start taking carbimazole that is asking for trouble, the hospitals are far too busy and right now they are treating virus infections. Wait and see.
I'm impressed! Do you not have regular blood tests to check your T levels?
I am still taking Carbimazole - 20mg a day - and just keeping away from people - not going shopping (my partner does that). We live in a rural place so it's fairly easy.
Yes my appointments with orthopists have been cancelled too. I really wouldn't want to sit in a waiting room in a hospital at the moment
Agranulocytosis is an acute problem, so you couldn’t rely on regular blood tests to pick it up. Although it is most common in the first three months, the risk never disappears altogether. Liver disease is also a rare but potential problem, although the most severe problems are more common with PTU than carbimazole.
I’ve been taking carbimazole for round 3 years and the only side-effect I’ve been aware of was hives, during the first couple of months. These were kept under control with over the counter antihistamines and when I stopped taking antihistamine at the end of the hay fever season, they did not return.
My initial dose of carbimazole was. 40mg /day. This was reduced to 10 mg/day, at which point thyroid levels shot up again, and my thyroid levels have been at/ just over the top of the range since, even though I’ve never dropped below 15 mg carbimazole/day.
I am considering my options because I’m clearly not in remission. I like travelling, and don’t want to feel unduly concerned at the thought of visiting countries without first world health facilities (ok, not an immediate possibility anyway!) I also don’t want to go through they way I felt when first diagnosed ever again.
It does feel as if we have to decide on a ‘least worst’ option if we don’t achieve remission - none of the options available (long term anti thyroid, TT, RAI) is ideal.
I should also add that although my endos have recommended RAI, I don’t feel as if I’m being forced down this route.
I found PTU better than Carbimazole because I came out in nasty rash when I took it. However we are all different and my Pharmacist told me PTU was an older and a much trusted drug. Having said that I still was given too much by my Endocrinologist who didn't monitor me properly. This was 10 years ago and know a lot more now than I did then after taking advice from Elaine Moore who has Graves' disease and has had RAI. I log into her site when I need advice and everything she has advised has really helped me.
I reacted to Carbimazole and had Aticaria 'hives' - I controlled this with a daily dose of antihistamine. I have since reduced the amount of high histamine level foods I eat and also have a herbal tincture that helps. Consequently I haven't has to take antihistamine for some time. I'm currently taking 20mg of Carbimazole daily, My T3 and T4 levels are 'normal' at the moment. My endo says to remain on 20mg... but I'm thinking of making unilateral decision and reducing this to 15mg every other day and monitoring the results. I would like to reduce further...
I've been reading Elaine Moore web pages
I have another question.. what is a thyroid storm?
I had this and just changed to PTU instead because of my rash.
What is a thyroid storm?
I had one last year after attending my friend's wedding in Shropshire. My husband and I decided to stay over night because of drinking more wine than usual. I hardly slept because of sleeping in a strange bed and after breakfast I felt like my heart was racing. Luckily my friend's mother was a nurse (now retired) and took my pulse and said it was ok just a bit fast. As we were traveling in the car home I started to shake and sweat and my heart felt like it was racing and I felt unwell so I said to my husband that I needed to go to hospital. We arrived at the Royal Shrewsbury and my husband dropped me at A & E. I walked in and collapsed in the reception area so a couple of nurses helped me to a side room and they thought I was having a heart attack. I could not stop shaking so they held me down while trying to do a ecg. They eventually managed to get one but my heart rate and blood pressure was very high. They took a blood test and I was told to wait in the waiting area where I could not stop shaking and my husband had to support me because I could not stand. I rang my daughter and son to say goodbye because I thought I was dying and I felt very scared. Eventually I was taken to a cubicle to wait for my results by then I was starting to feel a little better and my shaking had stopped. I think I might have had too much wine or champagne and coffee to cause this but I don't know to be honest or maybe my multi-nodular goiter might have suddenly dumped too much thyroxine in my blood stream. I really don't know but the consultant who looked after me said he thought it was something to do with my thyroid but he didn't know much about thyroid disease (what a surprise!). He then discharged me because everything seemed to have calmed down. When I got home I started to get a feeling of dread and started to shake again and my heart felt like it was bursting out of my chest so I called an ambulance and they advised me after doing another ecg to stay at home because my heart was fine. They hadn't even heard of a thyroid storm so were clueless. I just hope I never have another attack like that and now only have a cup of coffee a day and drink only an occasional glass of wine.
Wow! That sounds totally scary! I have not experienced anything like that and hope I don't! I still drink coffee several times a day (although my herbalist says I shouldn't) , and often have a glass of wine with dinner ... Hope that you don't have this ever again! Thank you for telling me.. Best wishes.
What you had could’ve been the start of a thyroid storm. More often then not if you have a thyroid storm you can have a cardiac arrest if blood pressure and heart rate can’t be controlled and can go into multi organ failure and die. A thyroid storm you start with what you had followed by elevated blood glucose (hyperglycaemia) followed by hypoglycaemia, elevated AST, bilirubin and LDH you get hypercalcemia and elevated alkaline phosphatase and elevated white blood cell counts. You also have a fever. More often then not the patients are admitted to ICU for continuous monitoring and intravenous antihypertensive drugs.
That is a rare occurrence LiliAmsterdam and I am still here to tell the tale after my thyroid storm last July. Just to add I notice you are a new member do you suffer from Graves'?
Lora7again yup, I do. I've been on anti-thyroid drugs for 7 months, max dose (90mg) since 1 month. My thyroid (corona permitting) will be removed in 10 days as it is still not properly under control and I want to start a family soon (not allowed at my current dose).
7 months is very short time to be on the drugs. If you click on my profile you will see it has been 10 years since I was diagnosed and I am now on my second remission and feel well at the moment. Some women do struggle afterwards to get the correct treatment so I hope you have researched this. I would have a look at Elaine Moore's site she had RAI and then started a support site to help and advise other people with Graves'.
I have just read your other reply so I see you have no choice but to have your thyroid removed. I wish you good luck with your operation and I hope other members can help and advise you more about what to expect afterwards.
I am pleased you have decided this because I if I had taken my Endo's advice 10 years ago to have mine removed I dread to think what state I would be in now.
I agree but some people can take them for years and are ok. I actually know someone who has been taking it for over 10 years and as long as they have regular blood tests they are fine.
But why! surely the ideal is to take carbimazole max 18 months if there is no relapse. Taking a drug for longer than 2 years may have consequences later on.
Some people have no choice and don't manage to go into remission. I have been lucky and I no longer take it but I might have to take it again if my levels become too high.
I asked my endocrinologist about this having told him I did not want an operation to remove my thyroid. He said that there is a very remote chance of developing a bad response, but it is rare and if there are regular blood tests this will be monitored
Having your thyroid removed should be the last resort because a lot of people struggle even more afterwards to get the correct treatment from their doctors .... this is why sites like this exist.
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