I am now going into my 4th week of being carbimazole free 😊 ( I will have my bloods done again next week so wish me luck and everything crossed 😬)After treatment for 14 months and in that time remaining in normal range.
I have searched the internet but can not find too much information on side effects from coming off carbimazole also people's stories seem to end when they feel better so have decided to continue my posts on here hopefully it will help others.
Has anyone else experienced symptoms after stopping carbimazole? Bearing in mind I have been very symptomatic over the last 10 months and after a lot tests gp put it down to side effects. Now I have stopped taking carbimazole ( last dose 2.5 mg) I feel sooo much better in myself near enough approaching my old self but in the last 3weeks I have experienced dry sticky eyes which has now cleared up, occasional morning nausea, and dizziness with weird feelings in my brain which has improved as the days have gone on, I have spoken to my gp who said because I have been so sensitive to carbimazole it will take a while for my body to rebalance itself and I was just wondering if anyone else experienced this?
Many thanks
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Lisa254
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Hello, I'm also coming off carbimazole right now. I was lucky enough not to have any symptoms while on it but now that you mention the nausea, I do have that. Plus my period is late, which is annoying but I know I've not gone hyper n I'm not pregnant. I unfortunately swung hypo before stopping so I'm dealing with some residual symptoms of that (hairloss =() but I don't think that's related to the coming off.
Congratulations on a successful treatment, its so exciting!!!
Hi, thank you and I wish you well in your recovery.
Hopefully the hypo will correct itself as your body rebalances. Yes the nausea thing I don't have every single day but I wake up with it and it wears off around mid morning, very strange!
My period too was also late this time whilst coming off carbimazole but only by a few days.
I had hair loss when I was borderline hypo back before Christmas I have thick hair and normally like a lions main without ghds! 😂 But it is a lot flatter now even to the effect of my friends constantly asking if I've just had my hair done (maybe a plus of the treatment) my eyebrows are a little patchy and taking their time to grow back to normal but nothing a pencil or micro balding at a later date won't fix. I'm just glad to be off the meds as I have felt so damn awful.!
I would be very interested in how you proceed. I am slowly withdrawing Carbi from my system - now on 1.25mgs every other day. Private Medichecks are within range and negative antibodies. Have you also had your antibodies checked?
I have strange symptoms at times! Like you - sticky eye and early morning nausea. I am hoping that it is my body re-balancing/adjusting. Also a sensitivity to Carbi and that now it may be that my thyrioid no longer needs to be suppressed.
I have a gp’s appointment in a few weeks and have written to the specialist for his thoughts.
I am also interested in that you appear to have your doctor’s advice? My gp has said she cannot advise/treat as I am under a specialist and my thyroid is hyper and she is not able to treat!
Wishing you the very best and I hope you are able to feel healthy again.
BTW - I have been on a gluten-free and dairy-free diet. Has this been the reason for the significant change in my results? Who knows!
That's great news you have negative antibodies, my endocrinologist wouldn't do another anti body test on me he (as I understand it mine were marginally out of range when tested back in sept) said it wasn't worth it even though I said about the research I had done.
I finished on 2.5 mg everyday which my endocrinologist doesn't prescribe he stops people on 5mg every other day but I had been on 2.5 everyday for 3 months and asked to go to every other day but he said not to bother and I'm just happy to be off the meds as I have been so ill on them. I do wonder if it is necessary for everyone to still follow this 12-18 month protocol treatment as I went back to normal after 4 weeks of taking the meds but fell really ill 4 months into treatment I felt like my body was trying to tell me to stop taking the meds but who am I to know!
Yes I have also been on a gluten,dairy,soya,alcohol and sugar free diet during treatment not because I'm allergic but through advice on here I just wish there was a effective food intolerance test so I'm not cutting things out unnessecarily. I had a nice piece of cake yesterday and feel ok today so I may just eat it occasionally now.
My gp has been great and also my endo. I think it's because I have been constantly in touch with my gp on a weekly or bi weekly basis as I have been so symptomatic that I have been unable to work so I think they have had to spend a lot of time on further testing to check everything, I regularly see an experienced acupuncturist who said she thinks it will take around 6 months to rebalance after this treatment, hopefully it doesn't take that long!
I just can not believe how out of balance I have felt and how much better I feel now.
I'm so glad my posts are helping , when I was really ill I was trying to find a story I could follow from start to recovery and found it hard so I wanted to keep posting my journey hoping it would help someone.
It is unfortunately such a bumpy journey ( for me anyway) and this site is very helpful. The whole way through my treatment I just kept reminding myself this isn't me it's the meds trying to sort my body out but giving me some crazy symptoms especially the panic anxiety and occasional depression it was so out of character for me but it has all subsided now and I'm so thankful for the support of my gp who didn't once throw other prescriptions at me for other tablets. There is light at the end of the tunnel you just have to sit tight, as I have decreased I could feel a little bit more like myself so I know I will get there on nothing 😊 I found looking at my diet and also acupuncture has helped.
I wish you well in journey too you will get there 😊
Don’t know if it’s any help you you because I stopped taking 40mcg carbimazole and 100g levothyroxine (was on block and replace) the day after my endo signed me off.
Nothing happened at all, I was amazed really but I do think it takes your body quite a while to get used to the ‘new normal’.
I had been ill long before someone finally diagnosed Graves so my body hadn’t been ‘normal’ for a very, very long time. Good luck with it all though.
Thanks for this! And also to others’ responses. You are writing things that are so similar to me! The hair loss, nausea some mornings! Fortunately my endo has always been happy for me to play about with the dosage of Carbi because I am so sensitive to meds and require so little! He was surprised that the low dose I was on (half of what he wanted me to be on) stabilised my bloods. I only ever need half a paracetamol for instance if I need pain relief!
Rather than just stop I am weaning myself off slowly so that my body adjusts itself as gently as possible.
Sadly, although I did have bloods within range again without meds, the thyroid spiked hyper again. I was under a lot of stress because of my husband’s illness and death. So - hence quite a long time for my body to relax again and me in no hurry to take it back into hyper mode! That is the only thing I would advise....make sure you do not rush into any situations that could cause anxiety/stress until you are really really feeling in tip-top form again!
I will re-test in say 6 weeks and fingers crossed I am still ok! And also to test for Ferritin, B12 etc as there may be other things going on as the body adjusts.
Thanks Carole for your advise 😊 The problem with me as like many others we think we can take on the world and I'm not good at recognising stressful situations for my body (I'm too laid back 🤦🏻♀️) which is why I think I'm in this position now, taken on too much!
I'm so sorry to hear about your husband and what you have been through.
Yes it's a good idea your tapering slowly I wanted to do the same but I needed to get back to normal as I have been off work for sometime so I'm hoping I will be ok!
I'm the same I have always been sensitive to medication I never take more than one paracetmol and I have to be dying to take that I think I went through all the contraceptive pills on the shelf to find one that wouldn't give me any side effects! Some people are so lucky to go through this treatment symptom free. Funny how our bodies are similar.
I have my fingers crossed for your next bloods are good.
I am just like that Celora. I need much lower doses of everything. Years ago I had a minor op, went through all the pre op checks, had general anaesthetic and stopped breathing as they returned me to the ward. I was told by other patients it was high drama. I was blissfully unaware until I woke up feeling battered to be told what had happened.
Hello JemBron, I’m so sorry to hear about your husband and couldn’t help noticing your indomitable and cheerful spirit! How are you these days? As to your advice on not rushing into stressful/ anxiety inducing situations, it’s something I try to consider everyday. Having Graves’ Disease has reduced my capacity to function optimally. Yet, there’s a constant temptation to get back into the swing of things even though I know that my body and mind aren’t ready. I dread that I may have to turn down my dream job but I hope that it wouldn’t come to that and that things will sort themselves out serendipitously. Take excellent care of yourself x
I also wanted to add about hair loss/nausea. It might be adrenal! Dr P is really ‘on the ball’ about eyebrows! Seriously sometimes the adrenals and/or candida can mimic thyroid problems. My early morning cortisol has just come back - perfect! I thought being a woman meant we are invincible/take on the world/any challenge! Now at 69 and a ‘sensitive’ I am only amazed I’m still standing!
I now try to think of my body as the most expensive piece of delicate equipment - treat me special and gently - and i’ll jog along happily!
I wish you well and also Lisa 31SW for your bloods.
Yes my cortisol tests came back normal, oh I don't know too much about candida, I had to stop googling a few months back as I'm sure I was close to getting a degree in thyroid disease doing way too much research and gave myself real bad health anxiety 😂😂
This certainly has taught me you have to look after yourself and I'm not invincible as I thought I was !! X
Hello Lisa254, I don’t know if you’ll see this as your post is from 2 years ago but here goes! How are you doing now? After just 2 months on Carbimazole, I’m now hypothyroid even though I have Graves’ Disease. My doctor has told me to stop taking Carbimazole entirely and see how things go over the next three weeks. In my ideal world, I hope and pray that my body balances itself out naturally and that I don’t have to go back on Carbimazole. I’ve also had such terrible side effects from the medication although at this point, these side effects could have been the result of Carbimazole making me hypo. I’ve never been particularly sensitive to medication in general but it could be that like you and others here, I’m sensitive to Carbimazole. I’ve also been following the AIP diet and lifestyle and maybe that has contributed to things swinging in the opposite direction so quickly. Hope to hear from you and wish you all the very best xxx
Hi bellazzurra, I am sorry to hear you are having to go through this journey, I hope your body manages to rebalance itself naturally.
I am doing really well thank you. I was on carbimazole for 12 months it made me feel absolutely awful I can not describe. My thyroid throughout this time was always in normal range but I think that’s because I took control ie I had my bloods done every month and I would call my endo and ask to descrease my dose.
I am now 2 and a half years off carbimazole and my thyroid Has remained in normal range. I would say it took me a good year or so to feel myself again ie energy levels returned, anxiety, panicky feeling,dizziness brainfog and otheR physical symptoms disappeared And my life is back to normal now.
I saw a Gp earlier in the year about something else and I mentioned to him how bad I felt on carb and he said it does give some people a lot of horrible symptoms which actually made me feel so much better as at the time I thought I was going mad, kept turning up to the docs with a list of symptoms as long as my arm and leaving thinking he thinks I’m a hyperchondriact!,
I think one of the main things that helped me (especially with the dizziness) when I was on carbimazole was acupuncture But it may not be for everyone.
I hope this is of help, and wish all the best and a speedy return back to your normality. xx
Thank you for your response and kind words Lisa254 😊
Your experience is a source of encouragement to me and a testament to the light at the end of the tunnel - I need to be patient with my body and mind. You were definitely not being a hypochondriac even though I understand the feeling. I need to trust myself more and reach out to my doctor when I notice that something isn’t right, no matter how small it may seem. I think I’m also going to borrow a leaf from your book and be more proactive with my doctor treatment wise. I get my tests done every month but I’ve always left the dosage exclusively to my endocrinologist. I really should give acupuncture a go; I’ve heard lots of good things. Many more years of health and happiness to you x
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