Carbimazole nightmare!

Hello guys, i am a 35 year old mother of 2

Amazing children. I was diagnosed in October last year with graves disease. It took a least a couple of months before I was diagnosed because my symptoms were quite spread out and was sent for a heart scan at one point due to ankle swelling, extreme rapid heart beat and shaking. I also remember dropping the shampoo while in the shower, bending down to get it and not being able to get up again!

Once I found out, I went to see a specialist who put me on carbimazole which was going well until I couldn't shake the flu so I want to the doctor for a blood test. The results came back with my white cell count which was down to 0.7 and it should be between 4,500-10,000! I was taken to hospital and was barrier nursed for a week until the cell count started raising. Problem is, because this happened my specialist is only giving me the option of radio iodine or going down the surgical route. He has given me 4 weeks to 'mend myself' and if not, choose out of the 2 he suggested.

I am now self helping my body with cutting out gluten, which after a week most of my symptoms were gone. I also eat 3 Brazil nuts a day, take a combined Vit b12 and magnesium and a vitamin D spray. I would say I feel at least 80% better although I am still sluggish and probably wouldn't be able to work any more then 30 mins or so. I also had acupuncture and reflexology. I am really hoping with my next blood test that the specialist is happy with the results as I do feel so much better.......time will tell.

Anybody out there with any success stories by going down the natural route?

Gemma X

6 Replies

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  • Whatever you do refuse RAI

    Its not safe in anyone under 40 and that was advice to my husband over 30 yrs ago

    Insist on being tested to see if you also have Hashimotos

    Hashis and Graves can run in tandem

    if you have to do surgery make very sure they will replace thyroid hormone and treat on symptoms afterwards NOT on blood tests because once the body is sensitised to high levels of thyroid hormone in Graves it will not be able to cope on their "normal levels"

    Its old Swedish research that's gone missing but my husband proved it was correct

  • Thank you for your message. I will look into all the things you have mentioned. hope your well. X

  • Gemma123, your endo can't force you into any course of treatment. If you want to stay on Carbimazole you can refuse surgery or RAI. If WBC goes low again on Carbimazole you should ask to be trialled on Propylthiouracil (PTU). PTU is a second choice drug to Carbimazole as it may raise liver enzymes.

    __________________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank you for your reply Clutter. I will look into the second choice drug. I do feel like my back is against the wall at the moment with my endo. Might be worth seeing another. Hope your well.

  • Hi Gemma, I too am a Gemma with two kids a year older than you who has Graves and has been offered RAI or surgery, so I think it's fair to say we have a lot in common! I have been on and off carbimazole since I was diagnosed in 2006 but my two most recent recurrences were both exactly 5 months post partem and I felt very much pregnancy related. My Endo said I'd had too many recurrences to continue on carbimazole (although thankfully I'd not had any white blood cell issues like your horrible experience) and must choose between rai or surgery. I chose surgery but wanted to wait until I stopped breastfeeding so was allowed to continue on carbimazole until then.

    I felt both options had severe drawbacks and I came off carbimazole without consulting Drs a year later I am still asymptomatic and my gp has agreed surgery seems daft if I'm healthy and Unmedicated. Im hoping I can avoid it long term but who knows?! I'm very interested in the efforts you are making to cure with diet etc. I gave up sugar having read some articles on that but several doctor friends said it was total nonsense so I gave in to the cake (I really love cake)!

    Good luck with your self healing! Gemma x

  • 12 hours agoGemgem990

    Hi Gemma, I too am a Gemma with two kids a year older than you who has Graves and has been offered RAI or surgery, so I think it's fair to say we have a lot in common! I have been on and off carbimazole since I was diagnosed in 2006 but my two most recent recurrences were both exactly 5 months post partem and I felt very much pregnancy related. My Endo said I'd had too many recurrences to continue on carbimazole (although thankfully I'd not had any white blood cell issues like your horrible experience) and must choose between rai or surgery. I chose surgery but wanted to wait until I stopped breastfeeding so was allowed to continue on carbimazole until then.

    I felt both options had severe drawbacks and I came off carbimazole without consulting Drs a year later I am still asymptomatic and my gp has agreed surgery seems daft if I'm healthy and Unmedicated. Im hoping I can avoid it long term but who knows?! I'm very interested in the efforts you are making to cure with diet etc. I gave up sugar having read some articles on that but several doctor friends said it was total nonsense so I gave in to the cake (I really love cake)!

    Good luck with your self healing! Gemma x

    Reply Like (0)

    a few seconds agoGemma123

    Morning Gemma, thank you for your reply. My Graves is down to pregnancy also and it's great to here that you off the drugs and doing well! it's really tough looking after the little ones when your feeling so under the weather.

    My diet is going well and although my specialist feels that diet cannot make a difference, I feel so much better. Still a little weak but I can live with that.

    Can you let me know what your symptoms were and if you still have any niggles?

    Take care,

    Gemma X

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