Hi all. In January i finally convinced my GP to perform a blood test and maybe start taking me seriously. For the last 4 years i have been shaking, palpitations, chest pain (several ECG's), massive weight gain, falling asleep, exhaustion and constantly having to clear my throat among many other symptoms.
Anyway, the blood test showed i am mildly overactive (TSH 0.02miu/L , T3 7.2pmol/L , T4 20.4pmol/L) along with all signs of inflammation high CRP, low haematocrit and high ESR. I have no idea if they have changed since then as i have only just had repeat.
I am currently awaiting my first endocrinologist appointment in 2 weeks, however endo has been speaking to GP about putting me on carbimazole.
I have been on 10mg carbimazole for around 3 weeks now and i feel beyond terrible. My chest hurts, im shaking, i feel really unwell, ive developed a sore throat and mouth ulcers and all my skin itches.
I had a blood test an hour ago for full thyroid test including T3 and full blood count including WBC.
Anyway sorry to go on. . . My main questions are:
Has anyone felt this bad on carbimazole? How long before you felt better?
Im struggling a lot at the moment any help or advice is welcome.
Thanks
Sam
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I'm not overactive myself (I'm underactive) and have no experience of Carbimazole but I have seen it said on here many times that if you develop a sore throat you should speak to your doctor.
However, I'm wondering why you were prescribed Carbimazole when only "mildly overactive" - you haven't given ranges but it's possible that your FT4 is in range.
Papitations, massive weight gain, falling asleep, exhaustion - these are all symptoms of hypOthyroidism (underactive) not hypERthyroidism (overactive).
I think you need all your thyroid antibodies tested:
TRAb - Thyrotropin Receptor Antibodies and TSI - Thyroid Stimulating Immunoglobulin - these are the antibodies for Graves Disease (overactive)
TPO - Thyroid Peroxidase and Tg - Thyroglobulin - these are the antibodies for Hashimoto's (underactive).
Hashimoto's is known as autoimmue thyroid disease in Doctor Speak (patients tend to use Hashi's). When Hashi's is present, the immune system attacks the thyroid and gradually destroys it, test results and symptoms fluctuate and you can swing from hypo to hyper and have symptoms of both. Hashi's often starts with a hyper episode. Your results being "mildly overactive" could possibly be that. Your results aren't really bad enough to diagnose overactive so it's really important to get those antibodies - all of them - tested to get a definitive diagnosis. There have been many, many instances here on the forum of patients being prescribed Carbimazole erroneously when in fact they have Hashi's and the doctors have so little understanding of thyroid disease that they don't recognise this.
Please go to the doctor or emergency immediately. Anyone with your symptoms on carbimazole needs to be seen ASAP. Post and let us know how you are doing, please. Someone else posted yesterday and was urged by several people to seek immediate help. I was on Tapazole for Graves for 2 years and fortunate to have no side effects, but most people are not so lucky.
SeasideSuzie is right - antibody tests are a must for you once you get this current situation under control. I don’t want to scare you but do not delay. All the best and feel better soon.
Over the weekend I replied as below to someone on carbimazole:
Do ring 111. Now.
Agranulocytosis can very rapidly deteriorate and cause severe problems.
Do you live with anyone? Make sure they are aware of the issues.
You are NOT being paranoid. You are neither qualified, nor experienced, nor do you have access to the appropriate tests. You must get medical assessment.
An extract from the documentation for one UK carbimazole:
4.4 Special warnings and precautions for use
Bone marrow depression including neutropenia, eosinophilia, leucopenia and agranulocytosis has been reported. Fatalities with carbimazole-induced agranulocytosis have been reported.
Rare cases of pancytopenia/aplastic anaemia and isolated thrombocytopenia have also been reported. Additionally, very rare cases of haemolytic anaemia have been reported.
Patients should always be warned about the onset of sore throats, bruising or bleeding, mouth ulcers, fever and malaise and should be instructed to stop the drug and to seek medical advice immediately. In such patients, white blood cell counts should be performed immediately, particularly where there is any clinical evidence of infection.
Personally I think you should get someone to take you to A & E now.
Not tomorrow, not after lunch, don't wait to maybe feel a bit better but go now.
You are clearly not well, and I was told when I started Carbimazole if I felt unwell to go straight to the hospital, and not waste time.
Carbimazole doesn't suit everyone, and it seems obvious you are not finding relief of symptoms but getting worse on this medication.
The hospital will take full bloods and you will get the results same day -- if you are not with positive TSI and or TRab anti bodies you do not have Graves Disease and should not be on this medication.
If you do have a positive blood test for Graves Disease and do have TSI and or TRab anti bodies there are alternative medications to Carbimazole that may suit you better.
Please don't waste any more time, you need to be at the hospital.
Thanks for everyones prompt responses it really means a lot. I have not had any antibody tests at all, i assumed these would be done at my first endocrinologist appointment. My fathers side of the family have large history of having thyroid removed. My mums side all underactive and treatment. Both my parents have never had any problems nor has my sister. I have called my GP who will call me back within 2 hours and hopefully get the blood results by then.
I was told this will save time if i do end up going hospital.
Anyway many thanks all and i feel confident i should not be feeling this way.
I agree with Susie and RFU, they should not have prescribed carbi without testing antibodies first. That is negligence, never mind saving time. An absolutely stupid risk to take with a patient. Your results do not look like Grave's, but I expect your GP was just looking at the TSH - most of them do - and had a knee-jerk reaction. Unacceptable.
Thanks for the update! Glad to hear doctor is on it - you absolutely should not be feeling that way. You are having a severe adverse reaction to the carbimazole - regardless of blood work results I hope doc will see you ASAP or that you will be going to the emergency. Good luck and glad you acted so quickly. All the best. Post and update us with how you are doing.
Across dads side is graves back to my great grandmother and grandmother and all aunts. My grandad had Parkinson's. On my mums side is underactive thyroid, copd, type 2 diabetes, alzheimer's and a few cancers. Both sides of the family have had thyroid issues however its much more prevalent on my fathers side. When i went to the GP in january with my list of symptoms all apart from theburning up, confusion and shaking could be explained by underactive. I was shocked to be told overactive.
Sam
Yes we hear you , loud and clear , you are struggling with lots of problems and trying to find one solution , I understand why you question your thyroid . I did. What you can do today is stop panicking and as you have written above shared a massive part of you . I am now invested in helping yoir current situation. Self care is always the way to begin , when you have other blood test results ? Iorn vitamins ect share here the advice is really wonderful, talking of blood and your symptoms I would detox . Clear filtered water only, bone broths plenty of fresh foods cheeses full fat milks Brazil nuts those sorts of things depending on your diet , I know it's a struggle to find answers when our systems are overloaded with toxins avoid caffeine if dealing with anxiety .I have unmedicated hashimotos living with only half a working thyroid (praying it's the good half ) I manage, you can manage this too.
My WBC is normal and i have stopped the carbimazole. My doctor has told the endocrinologist of my symptoms, so awaiting their response. Still feeling terrible but at least its not what was suspected.
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