I have had Graves Disease for the past 3 years and have been on Carbimazole for most of that time. I am being constantly hassled by my endo to have RAI which I have constantly refused. They now tell me I am ruining my health by being a bit overactive and taking Carbimazole every day and that I must have my thyroid removed. I have been given an appointment to see a surgeon to have a total thyroidectomy and am very nervous about this as I feel fine at the moment, and have done for quite a while now. Everything I read and hear about having your thyroid removed seems to suggest you will be set on a path of constant health issues which would put me in a much worse state than I'm in at the moment.
Does anyone have any first hand experience here, and does anyone know if being a bit overactive and on Carbimazole is that bad??
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jes99
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Dr Toft who was President of the British Thyroid Association has views on this. If you email louise.warvill@thyroiduk.org for a copy of the Pulse Article by Dr Toft on the use of carbizamole.
I felt better on carbimazole than I do 1.5 years post thyroidectomy. I had to stop because it messed with my immune system, but I understand this is rare. Sandra
I was taking it for about 2 years, but they didn't tell me to stop taking it until it upset my white blood cells- I was getting lots of low grade infections so they tested my blood. As above I think this is rare, but they tell you to watch for sore throats under side effects. This white blood cell side effect does mean you have to stop, but I am not aware of any other reason. Not an expert on this though as I now have more problems being under than over. At the time, I switched to an alternative, propylthiouracil (PTU) which I was fine on for a while. The endo also gave me some powders that they normally use to control cholesterol (Cholestyramine) powder which stops the T4 being recirculated. My levels came down again and I was much better for a while. I later had a reaction to PTU so agreed to TT on the basis they would promise to treat my symptoms not my blood test post op(which hasn't been the case more recently.) We are all different and I do seem to have developed reactions to all sorts of things since my Graves kicked in - sticky dressings, wheat and alcohol. My body tells me pretty quickly if it doesn't like something. Many get on perfectly fine without RAI /TT, some don't. I wish you well. Sx
My sister was on Carbimazole for about 3 years, went into remission for 11 months and Graves recurred. She also developed mild TED and was advised to have surgery or RAI ablatement.
She had RAI and is now hypothyroid and very much more comfortable being slightly underactive rather than hyperactive. Her eyes look worse IMO and I've read that RAI is NOT recommended if you have TED.
There was another post recently where the poster felt s/he
was being bullied off carbimazole into RAI. The consensus was that treatment cannot be forced upon patients. Search the Graves category.
I have Graves and have been on Carbimazole for five years. I am now on 40mg Carb and 100mcg Levo because I went way too far Hypo after being way too far Hyper. So now am on block and replace at least for the next year and feel very good. I was being bulled into RAI and told I was going to have it, to which I replied I wasn't and, thus far, things are going well for me.
I'm glad things are going well for you. I feel better than I have since I got Graves so am so nervous about drastic surgery which could make things so much worse. Very much being backed into a corner by a team of consultants.
I was diagnosed overactive thyroid in April 2011 and put on Carbimazole 10mg, reduced to 5mg after 3 months with ongoing blood test monitoring.
The Carbimazole was stopped April 2012 and all was good until blood tests showed that In October I had become overactive again! The hospital Registrar (arrogant/ignorant man) said I would have to have surgery or RAI and I refused both. Reluctantly he agreed to restart my Carbimazole 15mg this time and that's where I am right now. I have seen another doctor at the hospital and he suggested surgery or RAI telling me that afterwards "I would only need a little tablet daily after to keep me well, lol
Don't be bullied into anything that you don't agree with. It's your body and your choice, so I wish you luck and hope you feel reasonably well soon. xx
My consultant is also a bullying arrogant man who tells me the same thing. Just a little pill then everything will be fine. Well from my research that is so NOT the case. I think I will stay on carbimazole, but I think I should arrange a liver function test as I have read it can effect the liver!!!!
Hi, yes I am still on Carbimazole. I have dropped to 10mg from 25mg last August and am doing OK on it. I moved away from London where I was on block and replace and in the South West the consultant said they don't do that - another endo. fib. Once again he wanted me to consider RAI!!! He now understands that for me it is no, no, no. We don't meet up now as he says I seem to be on top of it and I have blood tests (should be three monthly but I leave it longer) and he gets the results and says whether he thinks I should alter my dose. Saves white coat syndrome at hospital where they check your weight, your blood pressure, etc. and then make you wait to see endo for several hours and then he's running late, etc. So much less stress doing it this way. I think if I could lessen the stress in my life then I would feel even better.
Your post really made me smile. I haven't had a decent thyroid trained doctor follow up since diagnosis in 2015, so I can totally understand what you're saying : )
I had to add to this as 5 years on from my last post my thyroid is now in the "normal" range and has been for the last three years! I stuck to my guns and refused RAI and a thyroidectomy. I managed to reduce the major stressers in my life which is what I put my recovery down to. Latest blood test last month still shows normal - whatever that is!! I know it's definitely not as easy as that to get to recovery but it does highlight the part stress has play in autoimmune diseases. Good luck to you all, I hope you are doing well
I am 4.5 years on carbimazole without coming off it and have been on a low maintenance dose of 2.5mg a day.
In that time, even while I was euthyroid and consistently on the maintenance dose, I suffered various attacks, both hyperthyroid attacks and menopausal symptoms.
Some of the attacks and symptoms are pretty violent. The latest suggest a spike in thyroid hormones that caused what seems to be like a mini thyroid storm. I had blood tests done a few days later and levels, as usual, were within range but BP was off my baseline to the high side around 130+ as I suspected it would be based on symptoms during the attack.
I had always adhered to the standard dosing for carbimazole, ie. titrate to the lowest dose needed to maintain euthyroid and stick to the dose.
However, looking at the various attacks, is it obvious that carbimazole was insufficient during these periods of stress, even though blood tests were always in range? Or could something else be going on?
I am seriously considering self-titrating my carbimazole to a need to increase or decrease basis.
I would appreciate your advice. I am not keen on RAI but may not have a choice : (
You know your own body is my advice. Nobody can tell you what is or isn't right for you. I find that if I forget my carbimazole or take it a few hours late, some small symptom will crop up to remind me. I tried dropping to 5 mg but it happened at the same time that I had a bad cold so upped it back to 10 mg. Very stressful at work currently and the other day I sat in the toilet and cried - pains in my neck, goiter large. Upped it to 15mg that day - got rheumaticy type pains in my joints so felt too much and dropped it back to 10 mg next day. I know folk will say this can't work but it's more a case of feeling at ease with how you feel. Carbimazole only has a half life of around six hours. At the moment I feel right and that is good enough for me.
TSH was over 75 when diagnosed! I am better suited to a very, very low TSH rather than something around 0.5, so I am still working in the hyper mode as opposed to normal for TSH but the rest of my results are normal and mid way normal.
my husband opted to stay on carbimazole he was offered the other alternatives., he got it down to 5 mg a day that was 20 years ago. he has been stable and well.. the doctor is now trying to wean him off the tablets slowly..
I am not saying this is right for you but he is glad he decided to stay on the medication.
Look into it more before you rush into something you might regret.
There must be others out there who opted to stay on the tablets..how did they get on ?
Good luck Jess, you learn to listen to your body with a thyroid condition so do what you feel is right for you. We all have good and not good days and it's good to share experiences and thoughts with others on this brilliant site. Keep your chin up now. xx
I was on Tapazole for 2 years with no side effects at all, and had I not become resistant to it, I would still be on it - I also had Graves and a goiter problem- but my endo was prepared to let me stay on Tapazole as long as I was doing well. I ended up with a TT 14 weeks ago.
He told me he had patients who were on Tapazole for a long time - one as long as 11 years - so I think it’s that docs worry about side effects and are in a hurry for RAI or TT.
Good luck and remember - thyroid conditions move very slowly and you have time for decisions - you do not need to rush unless there is a real emergency - and then they will tell you. All the best!
Please try and stay on the anti thyroid medications, and keep your thyroid.
There are options to carbimazole.
There are currently trials of a vaccine for Graves, so hang on in there, if you can.
Graves is an autoimmune disease, and as such it's for life, it's in your blood, your DNA.
The thyroid is the victim in all this and not the cause, the cause is your immune system. The thyroid is a major gland so when it comes under attack, and goes a bit haywire, the symptoms can be said to be life threatening.
To manage someone on ATD takes time and considerable skill by the endocrinologists.
Many outpatient departments are target driven to reduce the outpatient waiting times, rather than patient focused to be on long term medication, monitoring, and follow up.
Removal of the thyroid and a discharge back out into primary care releases outpatient appointment waiting times.
Living without a thyroid comes with it's own set of problems especially if you are not able to be prescribed the correct thyroid hormone replacements.
The thyroid is responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being.
Prof Toft the eminent endocrinologist has now stated : -
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine -131 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism. "
Thyroid hormone replacement - a counterblast to guidelines.
December 2017 - Journal of the Royal College of Physicians of Edinburgh.
Well, I think this says it all.
I'm with Graves post thyroid ablation 2005. and now self medicating with Natural Desiccated Thyroid having been refused help on the Nhs and been ill with the consequences on the Radio Active Iodine treatment I was given, I had no treatment options, it was RAI, or RAI. I was fine on carbimazole, a model patient, but compliant and thought the doctor had my best interests in mind. RAI is the cheapest, most cost effective treatment for the hospital, being a 20 minute outpatient appointment.
You might like to take a look at Elaine Moore's website for Graves Disease.
She has the disease herself and was treated with RAI back in the late 1990's.and found no help, unfortunately, I don't think much progress has been made.
She goes into great length discussing all treatment options for Graves and places great emphasis on patients taking an active role in their treatments, discusses alternatives and holistic options along with life style work balance suggestions, as ultimately, Graves is an auto immune condition.
Simply removing the targeted gland attacked by your own immune system does not actually solve the underlying problem, but leaves the patient with simply a different set of symptoms to manage. The Nhs believe they can manage hypothyroidism better than they can manage hyperthyroidism, but going by the numbers of patients looking for help on this website alone, I think not.
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