Sorry for the long post & rant!!
Firstly due to changes in legislation and after a lengthy meeting with my practice manager. I have been refused a print out of my blood test results done on Monday.
They were abnormal ie my FT4 so lab has requested a repeat blood test. I expected a low FT4 as I am on T3 only. I requested a copy for my own personal records and to discuss with my Endo so I could increase my T3 with his supervision. This was refused by one GP. I’ve never had a problem before so went into see the practice mgr to discuss and get them! Even showing the NHS choices website stating I can have access informally with going down the SAR route.
In the end I agreed to put it in writing for the practice mgr to investigate and come back to me. But in future I would need to do a letter each time I required a result which seems totally bizarre. The practice cannot provide the online service until its introduced in our region in may 2018.
So I ring my Endo (he has access online of my results). Firstly although I’m low in range on FT3 he says if I increase by 1/4 25mcg he thinks it’ll take me over range so advises me not to increase. But I feel poorly so going to increase anyway.
Also the hospital have decided that they can no longer supervise patients self medicating unless they get a private prescription and buy from the UK supplier at £258 pcm for 20mcg per day. Most can’t afford this.
He said morally it’s wrong that he can no longer look after me but his hands are tied by his employer. He is writing to my GP to advise him also. And said my GP might supervise me. But I know they won’t as he freaked when I first said I was going to self medicate on T3 as he is not insured. I also then won’t be able to get my bloods checked at my surgery. And what if I’m sick and it’s my thyroid? Doesn’t the NHS have a responsibility to look after me if I have hypothyroidism even if I’m not taking Levothyroxine?
I feel at a total loss today! I’m also under rheumatology with a rare muscle disease and connective tissue disease. So value my health care professionals looking after me. It’s scary to feel on my own taking T3 with no monitoring when I’ve been struggling for 2 years to get it stabilised.
I value this forum greatly, and without it I wouldn’t be where I am now. I probably know more than my GP’s but feeling isolated with a health condition that I have to self medicate because it’s so expensive the NHS won’t supply it is disgusting! They won’t pay £258 pcm at least for me yet they expect me to find the money and like many others I’m off sick disabled in benefits. Just feel like I’m fighting a losing battle.