I have been having symptoms for years and years that I can't get an answer to. The most persistent is fatigue, some days I find it impossible to get out of bed.
I can trace things back to around puberty, I put on weight for no reason, was diagnosed with exercise induced asthma and migraines and always seemed to have chest infections, nasty bouts of bronchitis and sinusitis all of which would drag on and on for weeks and in some cases months. I also started to do badly at school...I was in top sets and expected to do well but I found concentrating hard and didn't get homework done...I think I was just so tired.
Even before that I had things that now seem really coeliac, I used to feel really starving and shaky between meals...but my mum would tell me I had to wait for dinner and often after a couple of mouthfuls I'd feel sick. I remember often having to lie down really still waiting for it to go away. Also I had childhood eczema and funny rash across my cheeks.
Anyway...I've just hit a situation where I left a uni course (not for the first time unfortunately) because I'm too exhausted to cope...I tried to push myself but ended up with horrendous migraines and just couldn't go on.
The response from doctors over the years to my TATT has been really useless. I've got to the point where they make me feel like I'm nuts and bothering them for nothing. On average I end up going once a year with the tiredness because it's having such a profound effect on my life. Sometimes I've wondered if I am just lazy, but why would I keep putting myself through things like uni courses and career changes if i was?
I went around this time last year, the doctor was particularly rude but did say she'd test for coeliac, which I'd never heard of. I rang for the results about 3 times with no feedback, the receptionist just kept asking if i'd been tested for coeliac, which made me think that might be the problem. I went away and looked CD up and decided to go gluten free as I was on another course that I desperately need to get to the end of. I was called back for another blood test which came back negative. I spoke to the doc on the phone...she didn;t explain very well and said the first result was an anomaly. I wasn't told to eat gluten or asked if i'd stopped and since have found out it could have changed the result.
I ended up back at the doc's this April...older guy who didn't do coeliac test. Results came back and I was told they were fine but, despite deciding to tackle diet and exercise as a way to improve my own health kept having really shocking days. Went back and he said my iron was low(from previous tests....why he didn't mention it before then??) I asked about coeliac and he just looked at me and said 'You're not coeliac'. I asked why I'd been called back for a 2nd test the year before and he said I'd have to ask the doctor who did the tests.
I've changed practice and have so far seen teh asthma nurse who was lovely, so I tired to ask about coeliac. She was nice, but said something along the lines of ask for the test but you might not get the result you want and you'll have to live with being tired.
I'm 37 and feel less lively than my 75 year old mother...it can;t be right. How do I approach the next appointment...any tips?
Sorry for epic post...just frustrated at lack of help from doctors.