I was just wondering if anyone has ever had their dosage of carbimazole lowered on block and replace please. I have Graves’ disease and been on block and replace for 16 months, started on 40mg of carbimazole and 100mg levothyroxine. I’m now taking 20mg carbimazole and 100mg levothyroxine as instructed by my endocrinologist, it’s taken me 4 weeks of awful symptoms to finally feel better, almost immediately my eczema flared up on my legs, started feeling hot again and noticed my heart beat was slightly quicker after about a week of lowering the dose, it felt as if I was going slightly hyper again. This lasted for 3 weeks feeling weird, aches, feeling tired and then everything seemed to calm down again. I did have a heavy head cold which didn’t help either. My question is has anyone else ever experienced this and could this have been a normal reaction. I feel fine at the moment and I’m back to see the endocrinologist in December. Thanks for reading.
lowered dose of carbimazole on block and replac... - Thyroid UK
lowered dose of carbimazole on block and replace advice please.
Yoga after every change in doses we usually feel awful. The body needs time to adapt to the change and to rebalance.In my experience endos are not always good at making low and gradual changes to doses. My endos always seemed surprised when I made the changes they requested in smaller gradual steps rather than the larger immediate dose change. The smaller gradual changes may take longer but they are also gentler on the body and give it more time to adapt. It was a long time ago that I was on carbimazole but I would never reduce by 20 in one go.
Thank you for replying to me, that’s quite interesting and I understand what you are saying, I was a bit concerned about lowering it by half, I’ll speak with the consultant about it in December as she said they usually stop block and replace without weaning you off gradually and I don’t like that idea at all.
No, I started on 20 mg and after four weeks I got a letter from my endo telling me to get more carbimazole and double the dose to 40mg a day. My first appointment was three months after I started carbinazole and I was started on levothyroxine at that visit.
I stayed on 40mg carb plus increasing amounts of levo - I started on 50 mg levo ended up on 125 mg levo.
My block and replaced finished in exactly a year - one day I was taking all that - next day nothing. I was told on my first visit that my treatment would last for a year and it did.
Should add that I was absolutely fine stopping everything.
Why does your endo want to halve your carbimazole - did they say?
Morning, my levels are nearly normal so I think they are probably trying to see what my next blood tests are when I go back in December and decide what next as I’ve been on block and replace for nearly 18 months, nice to hear you are doing well.
Good that you’ve been on it for such a long time - I think a year isn’t long enough. I was probably lucky but a lot of people aren’t. I’ve been in remission since 2012/13 . I was always being told I’d be given RAI should I relapse! Last thing I wanted to hear. I always said I didn’t want it and when I was signed off I saw my GP so see if I could be forced to have it should I relapse and if I refused could they refuse to treat me and the answer to both questions was no, so I relaxed and got on with life.
Very best wishes to you too 😊
They mention RAI every time I go to the hospital but I really don’t want that as there’s actually nothing wrong with my thyroid gland so that’s good to know I can refuse when the time comes, such a journey this thyroid lark 🥴
I was told at my very first Endo appointment I was to have RAI the following year and though very well on the Carbimazole didn't know enough back in 2005 to say anything and relied on the medics having my best interests -
You may like to copy the following two research papers should push come to shove -
I may have already sent them to you - can't remember -
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
All things Graves - elaine-moore.com - for books, Stateside website and open forum :
Thank you for that information much appreciated, I knew absolutely nothing about hyperthyroidism or Graves’ disease when first diagnosed although I knew something was definitely wrong with me and I don’t ever want to go back there. The said because I’m only 55 staying on carbimazole wasn’t an option but at least I’m more knowledgeable about it now and can ask questions thanks to the valuable help we all receive from here.
I don't understand - do you mean you were offered B & R because of your age ?
Staying on the AT medication whether it be Carbimazole or Propylthiouracil ( PTU ) has to be the way forward for very many patients suffering with Graves - as I understand things B& R is random and depends more upon the hospital guidelines and the skill set within the department.
Could be wrong - I was 57 when diagnosed and had RAI the following year.
Sorry I meant the consultant said I couldn’t stay on block and replace for the rest of my life as I’m too young, she said if I was in my eighties she’d leave me alone and I could stay on block and replace forever but seeing as I’m only 55 she doesn’t want me to stay on it indefinitely. How did you feel about RAI and do you regret it or has it been a good decision for you.
I deeply regret this treatment option and if you wish to read more - press on the icon alongside my name - I'm not prepared to look back if I cn help it.
I do not believe RAI should even be offered in a health care system - the consequences are still unfolding and none of them positive for the patient.
if you refuse permission for either RAI / or thyroidectomy, then despite what endo says, yes, you can stay on B&R for the rest of your life .... they have no choice.
If you don't go into remission and you remain hyper , they have to treat you with carbimazole / PTU .... they can't send you packing ... they may not like it , and they may try to give you the impression it's not an option .... but they do have to continue to treat you ........ don't get pushed into RAI /thyroidectomy unless and until it is what YOU have decided is the best option for you.
as far as i understand it , the risks of having the serious liver damaging side effect from Carbi / PTU do not increase the longer you are on it .. the risk is the risk .. it stays the same .. i think what does increase the risk of having that side effect is starting/stopping /starting carbimazole or ptu.
Oh thank you so much for that, really appreciate the advice, I know everyone is different and we all have a tale to tell, I’m still learning but I realise it’s absolutely my decision at the end of the day.
To be honest I always felt that they just want to get rid of you off their list and once you have had rai and are no longer hyper then you are signed off and have to deal with your own GP who may or more likely may not be able to keep you feeling well.
I know they don’t seem to like carbimazole but when you look at some of the other horrible drugs that doctors are more than happy to give you (Im thinking alendronic acid for osteoporosis) I’m really not sure that carbimazole is any worse.
Yoga 54 - be sure to look after your bones. Graves’ disease is one of several markers for osteoporosis. Unfortunately that was never mentioned, I on,y found out when I broke my wrist. So do some research and read up on how to strengthen them, you’re young so you still have time on your side look on the ROS website, don’t let it scare you because there is no guarantee you will end up with osteoporosis but I do wish someone had warned me - I would have done a lot more to help myself while I still had time. You will find lots of ideas on diet and exercise theros.org.uk
Oh I will do, I try to eat pretty healthy and walk a lot and do yoga, thank you
As others have said - staying on Carbimazole IS an option. I have been on B&R about 8 years and feel well. It does require fine tuning but my mantra is Slow and Steady and always being on the lowest effective dose - currently 5mg. C arb / 100 mcg. Levo. I will only consider reducing slowly and stopping when my antibody levels are minimal. You say your levels are nearly normal - what does that mean ? Better to post actual results for comment and guidance.
If those were my results I would let things settle till review in Dec. I would be checking the fT3 then as at the moment it is quite low. If still low You have the option of increasing Levo or reducing Carb. Since your antibodies are now negligible I would reduce Carb to 15mg. and test again before any further reduction. As I said slow and steady - no rush.
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