I had a relapse of Graves a week ago. My endocrinologist prescribed 40 mg of Carbimazol daily and Propanolol. I started the prescribed treatment. However, after a week on Friday evening I felt a mild sore throat. Remembering the instructions,I skipped Saturday morning Carbimazole dose and did blood test at 10AM, which showed neutrophil count of 1.19 (was 3.6 only a week ago). GP suggested I go to ER to be on the safe side.
ER doctor repeated my full blood count test at 6PM and the neutrophil count was already 1.8. I was discharged with instruction not to take Carbimazole for now and to consult Endocrinologist. Except very mild sore throat that I barely felt, I had no other symptoms. I continue with Propranolol.
Could I please ask if I still will be able to take anti-thyroid medication (maybe a different one or a lower dose?) or is this mild neutropenia (1.5 to 1 threshold) is an absolute contraindication? My remission lasted seven years after the initial ATD course and I was hoping I can achieve it again. Many thanks for any comments!
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Belgianwaffle
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I was diagnosed with sub clinical hyperthyroidism 9 years ago and put on carbimazole. Like you I felt the sore throat but also really ill. I only struggled off the sofa to the gp because of the warning on the tablets. Ended up in A&E with pneumonia and zero neutrophils.
I’m sorry to say this but I was told both the forms of tablets they used had the same rare side effect. The only other treatment offered was radioactive iodine or thyroidectomy.
One of the consultants I saw on the ward said he would have tried me again on the tablets but the one I was under advised me to have a thyroidectomy. I knew nothing about thyroids at the time so just accepted the advice and had a thyroidectomy.
Tired! Yesterday and the day before I did normal everyday activities, nothing strenuous, and today I just want to go back to sleep! My husband has just informed me that I seem very dopey 😴today 🤣
On a serious note. The main things I have noticed since having a thyroidectomy are
1. I don’t have the same energy levels as before in terms of stamina. Because of this I’m not as active as I used to be, don’t see friends as often, and have to rest a lot more.
2. I have needed to make diet changes. I’ve resisted going gluten free but I have increased protein, increased fruit/veg and cut right down on processed food (e.g.no more nice puddings from M&S!), given up alcohol and caffeine. We cook from scratch as much as possible and make our own bread.
3. Since the thyroidectomy I’ve had problems with atrial fibrillation.
4. It can take years to get the right dose. I spent seven years on too low a dose and only after the endocrinologist mentioned it was a low dose and I wrote a short essay of all my symptoms and how it made me feel did I get an increase. Still working on getting optimised 9 years later!
5. The dose you get is also dependent on the size of tablets available. To get the right dose the doctors give you various combinations of different sized tablets. So you may find that for four days you take 100mcg and for three days you take 75mcg. However if you are really sensitive to changes in dose you may find that you have hyper symptoms on the higher dose days and hypo symptoms on the lower dose days. My body much prefers getting the same dose every day however I realise this is purely subjective! I once heard an endocrinologist say on a webinar that because we are given the same dose every day some days we may feel a bit hyper and other days a bit hypo depending on how much our body used on any one day!
There’s also how you feel about it in yourself -
It was a complete surprise to me to be diagnosed with sub clinical hyperthyroidism as I had gone to the doctor complaining of menopause symptoms. All my symptoms overlapped with those experienced during menopause. I can understand how someone suffering from graves may find a thyroidectomy beneficial especially if they get the right dose quickly. However from my perspective my symptoms weren’t resolved by the thyroidectomy, and it’s reduced my quality of life. Many times I have wanted my thyroid back - hence my user name. It’s taken me a long time not to feel angry about things, especially about the lack of treatment options available and the lack of information that was available to patients at the time.
Dear all, just an update for you. My neutrophils improved a bit (at least stabilized at 1.7) on Carbimazole 30 mg. So I continue to take it under endocrinologists supervision. I will keep you posted, if it can be a useful info for anyone in the future.
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