In May 2022 I had a blood test, requested from my GP because I was feeling exhausted. The result showed a TSH level of <0.01. I was immediately put on 20mg per day carbimazole and referred to an endocrinologist. TSH off the bottom of the scale indicates hyperthyroid. All subsequent blood tests showed TSH, T3 and T4 in the normal range. Over several months the endocrinologist reduced the carbimazole in steps, down to 5mg per day. In April 2023, following an antibody test, he told me I have no antibodies and this means that I don’t have an auto immune disease. I asked what is wrong with my thyroid and he said I probably have a nodular goitre.
I have been taking 5mg carbimazole since early 2023. I repeatedly declined radioactive iodine ablation. I caught a sinus infection in January 2024, for which in the last 14 months I have had 4 courses of antibiotics. Each time the antibiotics clear it, I have soon caught a cold (or once covid) and the infection has come back as bad as before. It is characterised by headaches, foul green sticky mucus and makes me feel dreadful. I won’t take any more antibiotics as they did not help.
Last Autumn in desperation, I paid £500 for Prof Tim Spector’s Zoe course. This was very good, although aimed at overweight and pre-diabetics, rather than me with a chronic infection. The outcome of the Zoe tests was that I have a very healthy gut biome and diet. I have also been working my way through Dr Michael Mosley’s ‘Just One Thing’ podcast series on BBC iPlayer. These are excellent. I can see that I have been seriously stressed for a long time and as a result had a bad sleep pattern. Incidentally added to the other stresses was a year thinking I had a life-threatening thyroid disease which as far as I know, now seems is not the case. Recently I have taken steps with my life and work to get rid of a good portion of the stress and continue to improve using Mindfulness and other strategies suggested by the 2 wellbeing doctors. My sleep pattern has improved enormously recently.
However, the sinus infection is persisting, plus for many months I have had continuous mouth ulcers. Also, in the last 3 months I have developed itchy skin. Itchy skin and mouth ulcers are known side effects of Carbimazole. It occurs to me that maybe this medication could also be contributing to the failure of the sinus infection to clear up spontaneously. Prof Spector says that he used to suffer from sinus infections and without antibiotics they only took a couple of days longer to clear up than when he took antibiotics. My conclusion is that, to have this infection for such a long time is not normal. Infection has never shown up in any of the blood tests. Otherwise, my health is excellent and I am building up my muscles again after a year of not being well enough to take much exercise.
3 weeks ago, I informed my GP that in order to see if it will help get rid of the infection I have cut down the carbimazole by half to 2.5 mg per day, with a view to eventually trying without it altogether. We agreed that I would have a blood test after 8 weeks to see if the reduction has any adverse affects . He said that he couldn’t agree to reducing the tablets without referring to the endocrinologist. I explained that I am not certain there is anything wrong with my thyroid. I only had the one abnormal blood test. Hyperthyroid as far as I know, is a symptom and not a diagnosis. I suggested a scan to confirm the presence of the alleged nodules. He said I don’t need a scan as nodules can be felt on examination. He then examined me and felt nothing. NB all my contact with the endocrinologist was on the phone so no one ever felt my thyroid; face to face was difficult after Covid. This increased my suspicion that the tiredness in early 2022 was caused by stress and maybe there never was anything wrong with my thyroid.
Since reducing the carbimazole dose the itching has gone altogether, as have the ulcers. The sinus infection is significantly improved. I get that this just might be the placebo effect, I am feeling a lot better and have higher energy levels than I can remember for the last few years.
My GP posted what I was going to do as a query on the endocrinology team forum. He said he had to do this as he risked being accused of medical negligence if he gainsaid the endocrinologist. I told him that I was not going to see this endocrinologist again as I didn’t like his attitude and I didn’t think he’d done an adequate job. He took a year to detect the lack of antibodies and did nothing to verify the presence of nodules.
Yesterday I received this in a text from the GP:-
"The endocrinology team have replied to my advice and guidance request regarding your carbimazole. They feel that your sinusitis problems are unrelated and do not recommend coming off carbimazole as you are apparently at high risk of relapse to an overactive thyroid if you stop. If you would like to discuss further please feel free to masker a routine follow up appointment."
I think I should ignore this and stick to my original plan with my GP ie a blood test in after 8 weeks of the reduced carbimazole dose. The text reads as if it straight from the mouth of my unloved endocrinologist.
If there were something wrong with my thyroid, surely, I should have a diagnosis. I don't think that I am at high risk of relapse. The only symptom I had was tiredness, so if I get a recurrence of this in the short term it’s a far less serious than the sinus infection that has blighted my life for the last 14 months. If I get any thyroid symptoms at least I will know if I have an issue with my thyroid or not. I am 73 years old and don’t feel inclined to do as I’m told. Can anyone advise me?
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