I have had ME (whatever that is) for 36 years. Since the menopause I have been considerably worse. I deteriorated rapidly 5 years ago, to the point where I quite literally couldn't even sit up in bed. My doctor refused to even come and see me.
Last October (a year ago) I was very ill again. I asked for a blood test and was told only that my iron level was high. I was retested in February this year, when I was feeling somewhat better.
I then had a severe virus in March, which left me with mouth ulcers, cold sores and dizzy spells for 2 months. This all passed, but in June I started deteriorating. I am a computer troubleshooter and web designer. I've been self-employed for many years as every time I was employed I was sacked for being off sick.
I have passed through stages since June - being able to visit my clients but being made ill. Then asking them to come to me. For the last 2 months I haven't been able to do that. I went to my GP in October and asked for a blood test.
The results apparently indicated that I have a high TSH level. My doctor initially refused to treat me, but gave in 3 weeks ago when I was so depressed that I literally lost it with him in his surgery. The following weekend I was so ill that I had to ask a friend to come and stay the night. I've never had to do that before. Another friend phoned my surgery on the Monday and arranged for a GP to visit. Needless to say they didn't - the doctor just phoned me instead. He said he would phone me back a few days later. He didn't and I've not heard from them since.
I asked for my blood results going back several years. These clearly show that my thyroid was underactive a year ago, and three years ago. I was never told.
I am now on Thyroxine - 50mg. It has stopped me getting worse and calmed my heart rate from around 120 to 80 per minute. It also seems to be bringing down my blood pressure.
I have been on ramipril for high blood pressure for 2 years, but my blood pressure has never been remeasured by my surgery. I have a machine and can monitor it myself.
All this sounds like a story of an incompetent surgery. They are the best surgery I have ever had. They are not rude to me, they don't shout at me.
In case you are thinking I spend my time making appointmets - I don't. I visit as rarely as possible. Sometimes I don't go for years on end. There's no point. They aren't interested.
However, when I was told about the thyroid it kind of turned on a light bulb in my head. How many of my problems are due to endocrine system disfunction?
When the doctor rang a couple of weeks ago I asked if we should be looking at my adrenal function too. His immediate answer was no, without even stopping to think. This is despite the fact that the thyroxine says it shouldn't be taken if you have untreated adrenal problems.
I feel that, for some reason I don't understand, my surgery are deliberately keeping me ill. I realise that sounds whacky/fanatical and I don't really believe it, but it makes you wonder.
The question is, what should I do next? I have an appointment to see Barry Peatfield in April, but that's 5 months away and I've already been housebound for over 2 months, feeling so ill I can't even tell you.
These are my latest results - with last October's beside them.
16/10/2012 28 Oct 2011
Serum TSH 5.67 (0.25 - 5.0) 6.60
Free T4 14.6 (12 - 25) 17.1
Serum C reactive protein 7mg/L (<4) I was only given above results for 2011
AST serum 23 iu/l (<38)
Serum ALT 16 (<38)
Serum lactate dehydrogenase 310 (200 - 520)
Serum gamma GT 17 (<40)
Serum total bilirubin 7 (<17)
Alk Phos 113 (40 - 135)
Serum total protein 73 (60 - 80)
Serum albumin 45 (35 - 50)
TSH - 2.75
Free T4 - not measured
Each print out that I have for the last few years contains different information and for some I have only been given TSH and T4 (when measured)
Yesterday I ordered the adrenal stress test from Dr Myhill. I expect this to take several weeks to come through.
Any suggestions about what I should ask for/ do next would be so welcome I can't tell you. Also, any suggestions for supplements etc that I can take.
I recently read this article on Dr Myhill's site - drmyhill.co.uk/wiki/Patent_...
I suspect that it applies to me, as when I am really ill I always have cardiac symptoms - to the extent that I have been asked if I have a hole in my heart. Yet when I am better, my heart apparently sounds fine.