Hi. I'm new here and have been watching the posts for a few days whilst thinking about what to write.
I was diagnosed with hypothyroidism 22 years ago and have only ever had Levothyroxine prescribed. I'm currently on 125mcg. All GPs and endocrinologists I've come in contact with since my diagnosis have refused to consider anything else.
From the very beginning I told my doctor that I still didn't feel well on Levothyroxine but got no sympathy or help whatsoever. I have copies of my medical records from 1980 to 2008 but not since then and trying to get copies of anything from my current GP surgery is a hopeless task.
At regular intervals I have tried to get through to them that I don't feel right and I still have hypothyroid symptoms but my records just show them saying 'Can't understand why she's still gaining weight when her tsh is fine' and similar comments. When I pushed it one time and insisted on seeing an endocrinologist, he offered me a psychiatrist referral.
I have periods when I feel worse, usually after some traumatic upheaval in my life and at those times I have asked for help but got none.
In recent years my tsh levels have been up and down like a yoyo. Mainly since I had a serious accident in 2008 and have permanent neurological pain which I am now having regular capsaicin patch treatment for. Initially the doctors tried all of the usual pain medication and one of the meds they tried was Duloxetine, which is an antidepressant with a side effect of neurological pain relief (they said). It didn't help with the pain at all. Whilst I was on that medication, my thyroid symptoms worsened dramatically and when I had blood tests, the comment in my records was - 'abnormal tsh, is she taking her medication?'
It turned out that Duloxetine affects thryoid function and causes weight gain, fatigue, etc!! Nobody bothered to check at the hospital or the GP surgery for contraindications.
Since then I had a bad stomach bug following a holiday in Goa which prevented absorption of my levothyroxine and my tsh shot up again. The GP increased my dose to 150mcg and for the first time since my diagnosis, I started feeling better and losing weight. However, I had horrendous palpitations and my dosage was reduced to 125mcg but the palpitations didn't stop, then reduced again to 100mcg. The palpitations stopped but hypo symptoms returned with a vengeance and tsh shot up. So now I'm back on 125mcg with hypo symptoms that won't go away. Tsh is within range so apparently I'm fine now. My hair is so thin that my scalp is showing, I'm cold all the time, have no energy, my legs feel like lead. In fact I have almost all of the hypo symptoms on any standard list. Other than that I'm fine.
Two years ago I found out from a sympathetic locum that my thyroid disease is autoimmune. He tested me for antibodies, but when the result came back he told me that it was irrelevant because the treatment is the same whether it's autoimmune or not. It did, however, start me on a quest to find out how to help myself. I went gluten free in April 2016 and have felt an improvement since. I insisted on another referral to the endocrinologist, heavily armed with information, but got fobbed off again. He didn't listen to anything I said, and without discussing it with me, he sent a letter to my GP telling him to reduce my thyroxine to 100mcg. I strongly objected to this as it wasn't long since we'd tried reducing it and I still hadn't recovered. I asked for a second opinion and was referred to a different hospital.
The endocrinologist there didn't know what the BTA guidelines said so I offered him a copy which he politely refused. I had asked him for a trial of combination T3/T4, which the guidelines recommend for patients who don't respond well to T4. He ordered blood tests and a short synacthen test for which I have to wait until May to get the results.
In sheer frustration I self-referred to a private doctor in London and saw him last week. He was very good. He's ordered the full range of tests, which I've paid a fortune for. Again I have to wait for the results, but not as long as the NHS one.
I am alarmed at the cost of this and am wondering if there is anyone on here from the North West of England who knows of any sympathetic and knowledgable GPs or Endocrinologists nearer than London as it takes so long to travel down there and back through the nightmare traffic that I have to book overnight accommodation.