Hyperthyroidism/Graves/Relapse after B&R/Carbimazole - at a crossroads !?

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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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  • Posted

    Hi I'm going through the same situation , I am going to start the RAI treatment on Tuesday and I'll will let u no how I'm doing . I am worried about the same thing on the RAI but I don't thing I have any choice than to have RAI cause the carbimaxole has some side affects on me .
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    • Posted

      Hi, thank you for your reply and I hope all goes well for you next Tuesday and yes please do keep me informed as to how you feel afterwards and for the following weeks - it may well help me to make a decision about what I should do.  I'm not going to make a decision just yet, I have 8 weeks before I see the Endo again and even then I dont have to make a decision as it is up to me what happens.
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    • Posted

      Hi I went yesterday to have my RAI , I was confused but my Radioiodine therapist assured me that everything will be good for me , so far so good , I can feels slightpain on my neck which ain't dat painful.

      I have to stay away from my children so I've sent them to my mums, the only thing I have to do is chill and relax and onli cook my own food and wash the plates I hav ate from my self , my doctor also said make yourself feel as if u have gone on holiday yourself .

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    • Posted

      I don't think this treatment is bad like people make it sound as. I'm glad I have gone for this treatment it's destroying my Thyroid for me , I do not need to have surgery , I'm getting my rest , family is helping me .. I'll keep u updated on things .
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    • Posted

      Have u got thyroid eye disease if u do the doctor would do tests on u before they give u RAI cause Rai can effect that , lucky I did not have the eye disease , if I left this treatment late then yesprobably I would get eye disease cause of hyperthyroid .
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    • Posted

      Hi mehnaz

      How would one know if one had/has thyroi eye disease? What tests are one to diagnose Thyroid eye disease?

      Why or how does RAi cause Thyroid eye disease/

      Kind regards

      Luucy

       

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    • Posted

      HI mehnaz

      Do you happen to know if  there any tests that show whether or not someone has or has ever had thyroid eye diseae in the past that went unrecognised at the time and was put down to dry eyes and migraine?

      Hope you are as well as can be expected. Do let us know how you do.

      Lucy

       

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    • Posted

      The experts look into ur eyes and they no if u have eye disease. You should google it and look at the images .the other thing is if u haven't got the eye disease and your overactive and it's not being controlled it's best u get something done like RAI or surgery , well that's what I think and even the doctor advised me
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    • Posted

      My endocrinologist and eye specialist does not recommend RAI if you have thyroid eye disease, which I have, the mild form. They both say it will make eyes worse.  I was diagnosed in Feb 2015 with graves disease after going from hypo to hyper. My endo (in Feb) and yesterday my eye specialist, both recommend taking selenium, which has helped my eyes get back to normal as they were red and one eye looked more open than the other.

      The commonest symptoms are mild soreness and grittiness of the eyes. Surprisingly, one eye is usually affected more than the other. There may also be increased watering of the eyes, a dislike of bright lights and a feeling of discomfort behind the eyes especially when looking up or side-toside. Puffiness of the upper eyelid or around the eyes (‘baggy eyes’) is also common and is worst first thing in the morning. The eyes often appear ‘starey’ and drying of the eyes or too much tears can cause blurry vision, which may come and go. Also some people get double vision.  I am in the UK and am on block and replacement (since June).

      Hope this helps biggrin

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    • Posted

      Thanks Mehnaz.

      I was diagnosed with dry eyes and wondernif they made he corrct diagnosis as I do not know how they can diagnose thyroid eye disease.

       

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    • Posted

      Thanks. That was a briliant description in every single detail of what I experienced.

      So it sounds as though I had the thyroid eye after all. I had not been diagnosed with the thyroid problem at that stage when I had problems with my eyes. They are actually a bit troublesome at the momneet with blurred vision and dy but notng like as bad as previously. Touch wood.

      I was prescribed lacrilube at night initially then artificial tears unable to tolerate either.

      The grittiness and red eye was caused by concretions that were removed under the sllit lamp.

      I had a posterior vitreous detachment as well plus usss eyes and retinal photography.No retinal tears but have to keep going back esp if vision becomes more blured or have more floaters or get any flashing lights.

      Sunlight bothers me . Also at the moment the light appears very bright.

      What treatment did you have for the thyroid eye?

      Lucy.

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    • Posted

      Just taking Selenium, as my condition is only mild.  Endocronoligist and Eye Specialist both recommend it, they don't recommend RAI as could make condition worse.  Not sure what the treatment would be if it got worse, hoping it will improve once my thyroid is stable. Fingers crossed x
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    • Posted

      Hi just updating u on RAI I had on Tuesday .

      I'm kind of feeling hyper , I'm getting emotional quicker on little little things my head feels full , got a sore throat but it's not dat painful , feeling cold sometimes then sweating most of the time , dry mouth . I'm drinking plenty wAter ,

      My doctor has told me that I may get hyper activity within the 2 weeks of treatment so Der u go I'm feeling like dat, I hav to start my carbimazle after 5 days of RAI . It's the third day yet so maybe when I get on my carbimazole may start feeling better , I'm still taking my proponolol tablets as doctor instructed me but not helping much ,

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    • Posted

      And I also couldn't go asleep at night I nocked out at 2am , cause of my dry mouth I have to drink loads of water and then in the middle of the night I have to go pass urine 2- 3 times
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