Hi,I am Autistic and I have an extreme medication phobia.
Its taken me ages but I finally managed to start Carbimazole. I only take between1/4 and 1/2 a tablet but it's working and my numbers are coming down, endo happy with progress.
However, the brand of carbimazole I was taking was Manx but they don't make it any longer.
I started the brand Flamingo this morning, I took a very small amount as I am extremely sensitive and it's made me feel weird and have palpitations.
Does anyone take carbimazole by the brand Manx, or know a good comparison?
I have looked at the ingredients list and the brand Manx and Flamingo do have a couple of the same ingredients but obviously it's not exactly the same.
I just don't know what to do. I am currently waiting for the endo team to get back to me for some advice.
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Bert01
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Hi, thank you for your reply. Yes I do have Graves disease. I only managed to start medication around 6 months ago. My results last week were: – TSH <0.02, Free T3 5.0, Free T4 12. This is based on around 1/4 of a tablet.
Do you have the ranges there for T3 and T4 please -
What strength is the tablet that you are taking a 1/4 of ?
Have you had confirmation of which antibodies were found over range and positive in your initial blood tests - these would look like TPO or TgAB with ranges or TSI - TRab - with a single digit result and target - or maybe you have a TSH Thyroid Receptor reading and cut off number ?
Ok - thanks - so the idea of the AT drug is to semi block your own natural daily thyroid hormone production while we wait for your immune system to calm down again -
These results show your T4 at around 40% with your T3 at around 54% through the ranges - so you are what's called T3 dominant as your T3 result in % terms should be lower in the range than your T4 result -
So you'll need to stay a little longer on this tiny dose of the AT drug and hope your T3 starts dropping back down and tucks in behind the T4 -
How are you feeling ?
If that is a ferritin reading of 15 - this needs immediate attention as it would seem you are also dealing with iron deficient anemia -
Your folate is also too low and I can't see a either a B12 nor a vitamin D - result:
I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.
The NHS generally allocate a treatment window with an Anti Thyroid drug for around 15-18 months and then if remission isn't found suggest definitive treatment such as RAI thyroid ablation or a thyroidectomy -
We do now have research suggesting the longer the patient stays on the AT drug the better the longer term outlook for the patient -
Graves is a poorly understood and badly treated Auto Immune disease for which there is no cure - there's likely a genetic pre-disposition with there being a family member a generation away from you with maybe an uncle or aunt with a thyroid health issue and Graves can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one or possible just seems to have happened ' out of the blue ' - no two peoples journey with Graves will be the same though we do know that stress and anxiety are common triggers.
I'm with Graves but post RAI thyroid ablation back in 2005 when I knew nothing and simply trusted the men in white coasts - being dyslexic the thought of reading up on a medical condition in a library not being on my ' to do ' list - I think I read in Elaine Moore's first book that here was a link with Graves and people on the spectrum - can you complete your Profile - please - at least with age and sex as it does make a difference as to your treatment options going forward.
Are your eyes involved - dry, sore, gritty, light sensitive or watering all the time ?
I take different strengths & often get different brands.
Been fine with flamingo, not had Manx.
It’s a good step to keep record of brand changes & comparing ingredients.
I couldn't find a patient leaflet for Manx, but I see them still listed on the NHS British National formulary, which list all the different carbimazole available to NHS.
Unfortunately it’s only a list & you’d have to look up each brand & ingredients individually.
Pill reactions do tend to be either stomach problem's, including, feeling sick & also skin rashes whereas thyroid hormones or other health issues including those worsened by thyroid, tend to cause palpitations. It is possible you are very sensitive to a certain ingredient, but my guess it that would settle too.
It were me, I’d persevere on a quarter dose for a little longer and put the palpitations down to thyroid levels which will settle.
Hi, thanks for your reply. It's around a 1/4 door. I started with a crumb of a tablet and worked up to 1/4, then I have been having a bit more than a quarter as the hospital want to work up to half a dose.
When I had Graves I used to keep a daily diary of how I felt each day and how much drug I was taking too - it was really just bullet points but it was very useful to link the two. You could do similar and link in brand names etc.
I think some people can be sensitive to certain things that others have no problems with. I know I’ve got a list of medications I just don’t get on with that others are fine taking but hey, that’s it. If you’re affected then you are affected - you aren’t saying you are for fun.
Could you ask your doctor to specify the brand you feel best on?
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