Graves Disease

[Mel2203]

Hi, I have just been diagnosed with Graves Disease/hyperthyroidism and been prescribed Carbimazole. Can anybody tell me if they've had any side effects? I'm concerned about taking them because I have a holistic approach to everything, I can't remember the last time I took pharmaceuticals. I've read that Hyperthyroidism causes high blood pressure but mine is low, will the Carbimazole make it lower?? Any advice would be very much appreciated. Thank you in advance.

[helvella Administrator Thyroid UK]

Lots of people get surprised by having to start taking carbimazole - I've made some notes here:

helvella - Splitting Carbimazole Doses

A short discussion about Carbimazole primarily focussed on splitting doses but containing some other information.

Last updated 18/07/2024

helvella.blogspot.com/p/hel...

And read the Patient Information Leaflet. At least twice. Then again tomorrow!

[PurpleNails Administrator]

I found blood pressure wasn’t greatly affected by thyroid levels. Although heart rate can be. Carbimazole won’t necessarily affect blood pressure, other factors are likely having more impact.

I didn’t have many side affect from carbimazole. I initially felt more itchy but it eased. Some feel nauseous or have headaches but they can usually be managed & do not last long.

There are side affects to be vigilant for, eg mouth ulcers, bruising for example which do need to be discussed with doctor.

Do you have any blood test results? TSH, FT4 & FT3.

It really important TSI or TRAb antibodies are tested to confirm graves diagnosis. Hyper can be transient.

What dose of carbimazole have you been given?

[bantam12]

I was on and off it for years from ago 12 to in my 40s, didn’t have any side effects from it. What did cause me long term problems was the actual Graves’ disease and relapsing so many times, left me with possible liver and definite heart issues, if I could rewind the clock I would have had thyroid totally removed at the start.

[pennyannie]

Hello Mel and welcome to the forum :

Graves is an auto immune disease and only tends to get diagnosed when your immune system starts attacking your eyes and / or thyroid as both are major organs that can cause life changing situations if not managed properly.

There is likely a genetic pre-disposition - with someone in your family, maybe a generation away from you, with a thyroid heath 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 maybe it's seems to have just appeared ' out of the blue' -

No two peoples journey with Graves are the same and probably why it is so poorly understood but stress and anxiety do seem to be common triggers.

Can you please share your TSH +Free T3 and Free T4 results and ranges and which antibodies were found positive and over range -

probably written as a TPO - TgAB - TRab - TSI - or as a TSH Thyroid Receptor antibody - number and cut off range.

The Carbimazole is an Anti Thyroid drug and all this does is semi-block your own new daily thyroid hormone production and slowly your thyroid hormones will fall back down into range and hopefully your symptoms relieved.

The symptoms experienced can be extreme or relatively mild and anything in between -

what is important is the confirmation and medical evidence that you do have Graves Disease and have the correct antibody reading as there is more than one reason why your thyroid may appear to be hyper in initial blood tests and why you need to know which thyroid AI disease you have as the treatment differs accordingly to the antibody found positive in your blood.

my only new issue which took me to the doctor was insomnia, others find their metabolism running very fast - eating for England - loosing weight - nervous, anxious, having angry outbursts, and with some brain / body disconnect - and you can find yourself on something of a roller coaster of symptoms with none of the fun -

Your body is in a ' heightened ' state and you likely need to rest, and be kind to yourself - let the medication settle and within a couple of weeks you should feel more comfortable.

If your heart is involved a beta blocker is prescribed - usually Propranolol - as this tends to slow the conversion on T4 into T3 - as it is too high a level of T3 causing these symptoms of hyperthyroid just as too low a level of T3 causes the symptoms of hypothyroid.

The NHS allocate a treatment window of around 15-18 months with an AT drug and the hope is your thyroid rides out this AI attack and at regular follow ups your AT drug is titrated down and this is just a ' blip ' and your thyroid returns to normal function without the need for any drugs within the allocated time frame - more radical treatment would be to have invasive treatment such as RAI thyroid ablation or a thyroidectomy and be on medication for the rest of your life.

I did not have any side effects when on the AT drug - Carbimazole - and felt very well on it - just wish I had been allowed to stay on it long term.

There is an alternative AT drug - Propylthiouracil - PTU - for short - generally prescribed if pregnant and in the first trimester.

You might like to read around on Elaine Moore's website as she has a section on holistic and alternative treatment options plus a very detailed website and several books published and now a world leading researcher in this poorly understood and badly treated auto Immune disease by mainstream medical.

elaine-moore.com

We do now have some research you may like to have :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

[Cat_lady13]

Hi, I’m a long term user of Carbimazole from the age of 18 (now47) and I have absolutely zero side effects other then what it’s supposed to do in terms of lower the levels, my blood pressure has always been fine. Whether it’s luck or not but just wanted to share that it can be taken without side effects

[mothsballs]

I have a holistic approach and fear all Pharmacuticals. I put off taking carbimazole as I was so scared. The graves disease was so much worse though, and I felt much better when I did start taking it. No symptoms or side effects from the medication & I am pretty sensitive to certain ingredients and chemicals. The only problem was getting the dosage right, I was on it a long time on different doses, including the highest dose at one point. I came off it on a few occasions and was even given block and replace, which wasn't so pleasant. so I was kept on carbimazole. When it worked and the dose was right i felt realy well. I was told my thyroid would eventually go hypo and to stay on it till that happened. Unfortunatly the carbimazole stopped working and I was having a rapid heartbeat, otherwise I would have been happy to have stopped on it.

[misky]

Hi Mel,

Graves' disease is a serious illness and it can cause a lot of damage if you don't treat it. I took carbimazole for over a year (the only side effect at the start was itching, but it subsided) and after that I was in remission, and have been ever since... that was over 11 years ago! So please give it a try. Pharmaceuticals are a gift from science and the modern world, there's no need to shun them if you take them in a responsible way. If carbimazole hadn't existed, I would be dead - that is the truth. My FT4 was >100 and my heart rate was 196 bpm. Just know that maybe you won't need to take it forever. You have a 50% chance of remission, I wish you lots of luck!