I asked doctor for carbimazole and showed them my new numbers but they said numbers arent much higher and wouldnt treat me. had an appointment with an endocrinologist who I havent seen before but he wouldnt treat me either and told me to come back in two months.
Made contact with my usual endo and luckily he agreed to give me carbimazole 20mgs and propranolol 80mgs. Started the carbimazole today. I have a history of thyroiditis but no diagnosis of graves or hashimotos.
Am not sure what to do with carbimazole - if I stay on it and my numbers come down and I come off it what will then happen to my thyroid - will it be the back to the rollercoaster of hypo and hyper (have been on carbimazole before and levothroxine)? Would block and replace treatment be something I should find out about? I would be glad to hear other peoples similar experiences Thank you
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jenny876
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If there are no physical, obvious symptoms of a swollen neck or trouble swallowing or nodules on your thyroid - we are likely looking at 1 of 2 auto immune thyroid diseases.
Graves Disease causes high T3 and T4 readings which keep rising causing and can cause life threatening situations and an Anti Thyroid drug, such as Carbimazole is prescribed.
The AT drug blocks new daily thyroid hormone production and slowly the T3 and T4 fall back down into range, the AT drug titrated down, and symptoms are relieved.
If remission with the AT drug is not successful the NHS generally suggest RAI thyroid ablation or a thyroidectomy and you become primary hypothyroid and prescribed T4 - Levothyroxine.
With Hashimoto's Disease the T3 and T4 do not rise as high, and fall back down into range themselves and there is no need to prescribe an AT drug - but with every swing into ' hyper ' symptoms and readings the thyroid is becoming increasingly damaged and can't recover normal function and the patient becomes hypothyroid and eventually will need to be prescribed T4 - Levothyroxine - thyroid hormone replacement.
The only way to tell these 2 AI diseases apart is through an antibody blood test to see which antibodies are showing over range and postie in the blood.
Have you results / readings there of which of these thyroid related Auto Immune Disease you have - as that should dictate the treatment received.
Well - you have an over range Thyroglobulin Antibodies result there - TgAB is suggestive of Hashimoto's AI disease :
Though we do see some people running with Graves and Hashimoto's and in that case we need a positive and over range Graves antibody reading - generally written as a Thyrotropin Receptor antibody - which can be either Blocking or Stimulating - at any one time - with symptoms of either hyper or hypo - as these two extremes of symptoms vie for control of your thyroid.
If positive for both Graves and Hashimoto's - Graves takes precedence as this AI disease is considered life threatening if not medicated.
Thank you for your reply. Do I need more tests then for this Thyrotropin Receptor antibody ? My GP wont test anything other than TSH and T4 and endocrinologist wont do anymore tests so would have to be a private one.
I would imagine this has already been run - can you contact the endo who prescribed the Carbimazole in the first place and has prescribed again recently for you - and ask what was / is he treating you for ?
Generally Carbimzole is prescribed for Graves - and generally speaking there needs to be the medical evidence of over range and positive TRab / TSI antibodies before the AT drug is prescribed.
According to your doctor and current endo it looks like they are likely treating you for Hashimoto;s AI disease.
Antibodies wax and wane throughout one's life so there's no guarantee testing now would be conclusive -
but I believe Medichecks runs a test for Graves Disease - marketed as a TSH Receptor Stimulating Antibody blood test @ £100:
My GP wouldnt treat me so asked my usual endo for carbimazole and he agreed. he says im a mystery so no diagnosis other than thyroiditis ongoing since 2019.
I have symptoms of graves now with gritty, dry, irritated eyes, heart palps, insomnia and I feel even worse since i started carbimazole on Tuesday. I have no professional person I can go to about this and no long term treatment plan .
The more I read about graves and hashimotos the more confused and hopeless I become. I know im not alone from all the contibutors posts on this site. I might get the Receptor Stimulating Antibody blood test and see if that shows anything. thank you for your advice
Please - whatever else you do just ensure that any eye drops, greases or lotions you use are all Preservative Free - even those prescribed.
I wonder if it might help talking with the Thyroid Eye Disease Charity - tedct.org.uk
as they can refer you to specialist clinics usually attached to large teaching hospitals throughout the country - where you will see both an endo and eye consultant who work together to manage thyroid health issues.
Obviously if you live within a ' stones throw ' of Moorfields - or any of their outlier units - I remember just walking in without an appointment and seen same day.
These might be walk in clinics - I do not know - but you are clearly unwell and just being told you are a mystery in no help to you and likely causing you more anxiety and stress than necessary.
Unfortunately I dont live near this area. I paid to see a private endo when I had been taking levothyroxine for hypothyroidism from November 2022 to June 2023 and he told me to keep taking it if i felt it helped me - i didnt know if it was helping me as had swollen stomach and hair loss since starting it - he said staying on it wouldnt make me hyperthyroid - needless to say I didnt stay on it and became hyperthyroid anyway.
I am trying to do research to see what options are available to me but there is so much confusing information that often contradicts and at the end of the day I am not a medical professional! And I am without a proper diagnosis. Thank you for your reply
Im just wondering how often an endo should be testing for antibodies? Ive been seeing mine since 2019 and have only had them tested once in march 2022 - antithyroid peroxidase not elevated at <9 iu/ml and throughout the whole time they have stated that my antibodies are negative.
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