I had my appointment arranged by the CCG with an endocrinologist today to discuss my 'clinical need' for T3 and Erfa thyroid. I had a total thyroidectomy 16 years ago and suffer from lymphocytic colitis. The three times I have tried to take thyroxine my colitis has been severely exacerbated. Because of this I have been prescribed Erfa thyroid on the NHS with T3 which does not cause me problems.
The endocrinologist I saw today was a lovely person but could not easily comprehend English, either the written medical history I supplied or our conversation. The endocrinologist supported my need for the thyroid hormones I take but said that Erfa Thyroid cannot be prescribed on the NHS. I have had Erfa thyroid prescribed on the NHS for 15 years. The endocrinologist said my T3 will continue as long as my thyroid chemistry is OK and a Dexa scan. I have osteoporosis as my mother did before me. Will the osteoporosis be blamed on T3 now?
I feel like giving up, the endocrinologist asked if I am working, the medical history showed I was retired in 1993 on medical grounds. The endocrinologist asked if I was on thyroid hormones before my thyroidectomy when the medical history pointed out that thyroid disease had been missed for ten years before my surgery. This person was very supportive but communication was so difficult.
I live part time in Greece and was a health professional in the UK. My Greek is not colloquial and I could not communicate easily there on sensitive issues. This CCG manhunt on thyroid hormones is so sensitive and people should be able to communicate on such an important issue.
What do I do now? With no thyroid and without the thyroid hormones I need to survive my life expectancy is short. 20 mg of T3 will not keep me alive for long.
My husband wants to write to the CCG and MP, I feel like I've fought long enough.