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Jan Sc

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    I was diagnosed with hypothyroidism about 25 years ago by my NHS GP at the time. To this day, I’ve never been tested for anything other than TSH by the NHS and I don’t know whether I have the usual Hashimotos or something else. I took Levothyroxine for many years but I’ve never really felt well since - that’s 20+ years of not feeling on top form. Looking at the family tree, on my father’s side, 2 of his siblings have hypothyroidism (a third died before he could be diagnosed) Now in my generation some of my first cousins have already been diagnosed with hypothyroidism too. When I asked about genetic testing I was more or less laughed at! About 10 years ago after reading up on thyroid issues I realised I was never going to get any further with the NHS, even the GPs are blocked from accessing anything other than a TSH blood test. I asked my GP at the time THREE times for a referral to an endocrinologist but was refused as my bloods were in range. So if I’m adequately treated why do I still have all the symptoms of hypothyroidism? No response. Then I researched for a private endocrinologist who might be open to looking at other treatments. I found one but he wanted a GP referral so I booked to see another GP in the practice who was happy to provide my privately funded consultation- this was emphasised to me!!! I wrote to the consultant to advise him of everything I had tried to date. When I had my consultation, he thanked me for my letter, then said he would recommend my GP to try me on a small dose of Liothyronine together with a reduced dose of Levothyroxine. About this time I moved house and the new GP wrote to request funding from the CCG, which was agreed given it was such a tiny dose. (Initially I had to cut the tablets in half). I am now a pensioner and unable to afford a further consultation or private medication. The NHS needs to completely overhaul and review the blood tests and medications available to patients. I, and thousands like me, shouldn’t have to suffer! It’s interesting that there are adverts on TV for painkillers where female patients are not taken seriously for their pain, many have been told it’s all in their head. It seems a similar attitude is at play here given the majority of patients suffering are female!! Come on NHS start basing tests on women too. All I want is access to medication which will work for me and other hypothyroid patients.

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