It would appear that my body doesn't react very well to Carbimazole. Since starting it nearly 3-4 weeks ago at 2 x 40mg a day, I had to stop it after 4 days because I developed a sore throat. I went for a blood test and it showed that my white blood cell count was low. After stopping the Carbimazole for a couple of days, I went for another blood test and it showed that my count had improved.
My endocrinologist rang me and prescribed me to start on a lower dosage, 2 x 5mg a day followed with a blood test 7 days later, if the blood test came back ok then I was to up my dosage by 10mg a day every week until I was on 40mg a day.
I have just had my 7 day blood test and it showed my white blood cell count was low again, they have booked me in for another blood test for 7 days time to check it it has improved. When I spoke to my endocrinologist he said if I wasn't suited to the Carbimazole then I would have to have an urgent thyroidectomy because my levels are too high.
I am not sure how I feel about this, I was only diagnosed with Graves Disease 3-4 weeks ago and still trying to get my head around it all. I think having a thyroidectomy sounds quite drastic but I know there aren't really any alternatives.
Has anyone else gone through this? Any advice would be greatly appreciated
Thanks!
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Ashley1985
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Hi again Ashley, First of all you are lucky to have an Endo/GP who's prepared to give you weekly tests - mine are basically every 3 months! However it does sound as though your Endo is being quite hasty - it's a good idea to explore all the options before going ahead with a procedure that is irreversible and will condemn you to taking medication for ever. Try Susan Blum's book on beating auto-immune disease or (if you can't get hold of it - I got a copy 2nd hand on Amazon) immediately give up ALL gluten, dairy, soya and corn as a holding measure while you explore the literature on the subject - there's quite a lot of it, and others on this site will be able to make recommendations.
I've been on the no-gluten, dairy and soya diet (have found I'm OK on corn) now for 5 weeks (alongside 10mg of Carbimazole a day which I've found is the maximum I can tolerate) and am feeling well - have recovered from the appalling insomnia and my husband says I'm pretty much back to normal. If nothing else, I think the diet has enabled me to tolerate the Carbimazole better.....
My wife was diagnosed Graves 2 years ago. She was in a bad way. We got an appointment with an Endocrinologist within a week & prescribed the same dose. The day after, my wife said she hadn't felt that good in years. By the weekend, she was glued to the settee & couldn't get off it (that's not her!!). Basically, she'd gone quickly from Hyper to Hypo.
Thankfully, I'd researched & found some incredible ladies on a Thyroid forum, who were able to advise. They said she had to learn to listen to her own body. She knew what Hyper feels like & now Hypo. They advised to cut the dose right down & gauge it herself on a daily basis. That's what she did. They also advised us to request a Vit D3 test (as D deficiency goes hand in hand with Graves). The test confirmed severe deficiency & she is prescribed 20'000mg/month (although she takes 5000mg daily now).
Luckily, after about 6 months on 5mg, she found she didn't need to take it. Recent blood tests show she's just creeping towards Hypo now, so we're off back to see the Endo.
I'm not well enough read on the WBC aspect, but I would say Carbimazole is powerful stuff, so take the great advice we were given & listen to your body.
On the Thyroidectomy, I believe that if your Thyroid really is out of control, it's best out & it's not such a big procedure. Certainly better to have surgery than RAI.
Knackersyard I wonder if you have had your Thyroid Gland removed due to your statement - "it's best out & it's not such a big procedure".
Considering that the thyroid gland enables our whole system to work interconnectedly if our hormones are 'out' just a little we can be very unwell indeed.
Some who have thyroid cancer have no option but to have their thyroid gland removed but the after care leaves a lot to be desired if the patient is left high and dry afterwards or thought of as being hypochondriac as they aren't recovering at all.
This person in the link below believed her surgeon (as we all would) but her after-care and the insistence of being given only levothyroxine didn't bode well for her or her family. If one person in the family suffers they usually all do. This person has now Petitioned the Scottish Parliament.
If you bothered to read my whole statement before jumping in to attack, you would see I said "IF YOUR THYROID REALLY IS OUT OF CONTROL,, it's best out & it's not such a big procedure".
I wasn't suggesting anyone go have their Thyroid removed for no reason. I know a lady with Graves (who was extremely helpful to us) who had hers removed & said exactly that.
Knackersyard, I think the lady you mentioned was very lucky! It is a big procedure for some of us. If you've not had it done personally, how would you know.
Just telling how it is for others and for you to beware. Worth asking around for a bit more information if you don't find it on this site. It is the best site going though. Wish you well.
This is a statement made by a doctor who was President of the British Thyroid Association:
5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?
The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.
Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.
There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.
But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.
Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.
Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.
hi there Ashley , from a personal point of view I would question the full and complete reasons why your ' consultant /specialist ' is recommending this coarse of treatment - request the advantages /disadvantages / effects as well as the LONG term effects that it will have -- inc. lifetime medications that will be needed if you go with this -- why is he/she not exploring other avenues [ as the above post states ] before opting for the easiest option ....... my lady had the same option given and WE decided against and she is now down to a minimal amount of meds and has not gone through the surgery and STILL HAS HER GLANDS ...... when they are taken out you cannot replace them ------I fully realise that there are some times when removal is vital/nessesary but it seems to be the first ' port of call' rather than resolving the problem at source .......just my thoughts on this .......alan
I had a thyroidectomy 2.5 years ago due to cancer, at the age of 33. I haven't yet got back to the stage where I'm thinking about working again. I'm in bed most of the day. About a year ago I got to the point where my endocrinologist couldn't do any more.
I think I've been fairly unlucky, but it seems to be standard to take 18 months plus to get substantially better, and better probably means about 70/80% of where you were before.
Hi Ashley. I was first diagnosed on April 13 with Hyper/Graves. Put on Carbimazole only to have strange side effects with pain in jaw/teeth. The docs/Endo changed me to the other meds - proplythouracil which I took for 14 months without any problems when told to come off.
Sadly I didn't stay in remission for long and after putting on 2 stone and getting the symptoms back I was back on my meds in June this year. The new Endo I am now seeing has suggested RAI or Thyroidectomy and thinks the latter is best for my situation. After a few weeks of thinking about it and my replies on here I have decided on op.
Its a hard decision to make but ask yr GP to see if you can try the other meds first before you have to decide.
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