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Firstly I will apologise for what I think is going to be a long post but would appreciate you and everyone else who has Graves to read and respond with your/their thoughts. Secondly, please read all my other posts which will tell you of my personal journey so far.
I had been on B&R for 20 months, my GP stopped medications of Carbimazole and Levothyroxine in August 2015, I immediately relapsed into hyper with a vengeance (within 4/5 days), put back on Carbimazole and referred back to the Endo and received an appointment to see him on 10th November. In between time, my Sept and Oct blood tests have been off the scale (please see previous posts) and after my GP consulted the Endo he prescribed 100 micrograms Levo (along with the 40 mgs Carb) until my appointment on 10th November.
I received a cancellation date to see the Endo which was Tuesday of this week (28th Oct). I went "armed" with a notebook of questions and notes I had made from reading various things on websites and from many posts I had read from fellow Hyper/Graves sufferers on here. I also took a print out of Dr. Tofts article re: the the three treatments for this disease for patients who had relapsed after B&R.
I had had a feeling that at this stage/appointment the subject of a thyroidectomy or RAI would be raised and offered to me and I went determined to "keep" my thyroid and ask for long term anti-thyroid drug treatment i.e. Carbimazole (just a low dose if necessary).
So when the Endo told me that I was NEVER going to get better because I had relapsed after B&R and the only alternatives were the operation or RAI and he suggested RAI, I immediately showed him the print out and pointed out the third option of long term drug treatment! To which he said "yes we can do that if that's what you want". I was SO relieved and happy BUT it was short lived, he then continued "but that article does not tell you about the risk involved regarding taking Carbimazole for a long time. Carbimazole can have an effect on the white blood cells which is why we carry out blood cell tests on Graves patients and for 1 in 3000 (yes that's one in three thousand) the result can be fatal".
One in Three Thousand IS A HIGH RISK - had he said 1 in 30,000 or 1 in 300,000, I may be prepared to take that risk but NOT when the odds are 1 in 3000.
This is not a "woe is me" story, there are many who have suffered worse but I have had so many medical issues/conditions and consider myself lucky that I am still here after having a malignant bowel tumour removed before it had had time to spread - that being just one of my past medical problems, but I also consider myself to have been extremely unlucky to have had ALL of the medical issues that I have had when there are so many who go through life having had no health problems!
When I was diagnosed with hyperthyroidism/Graves 2.5 years ago now, I had absolutely NO idea of how serious this disease is - my GP nor the Endo explained anything to me and I just assumed that I would take a course of tablets and hey presto I would be fine! 2.5 years down the line and not having had many weeks at all of "feeling fine", I am now left feeling at such a low ebb, so confused and still extremely under the weather.
My problem with having RAI is that I have read on here that so many people have had this done and are still not "normal" - some are still having "hyper" symptoms and some have gone "hypo". Are there any successful RAI patients please ?
The Endo I saw yesterday told me that RAI is 80% successful and if not successful the first time, it can be done again.
The thyroidectomy is a 3 hour operation - I have had too many operations to even think about going through another one.
The lifelong Carbimazole.....................a 1 in 3000 risk of a fatality ??? Has anyone else been told of this risk ?
I know from being on this forum and the Thyroid UK forum that many, many patients have been on Carbimazole for a long time, some for 20 years !
It's been a "rotten" road so far and isn't getting any easier. This disease has taken so much of life so far including as a first time grandma not being able to spend the time with my 17 month old grandson because of having a full blown panic attack when he cried when I was changing his nappy when he was just a few weeks old and had to shout for his mummy to take over - how ridiculous is it that Graves can do that to a 60 year old who has had 2 children of her own. Unfortunately, my grandson was born in the same month I was put on B&R (April 2014) and the treatment didn't work particularly well for me. At the same time, my father was taken ill and in and out of hospital for the whole of 2014, he died in January of this year and all this stress clearly hasn't helped my Graves journey - we all know stress is a trigger but no one can go through life without stress of some kind.
Sorry it's been another long one !
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