Hi I'm new here & have browsed through the old P A forum and thought it was well and truly worth me signing up to this forum.
I've always been a skinny, healthy, active, fun loving person up to 2009 when I had my second child & I got a terrible ear infection that knocked me 6! I finally went on 3rd dose of super anti biotic but I still felt awful, exhausted (Baby was sleeping through the night from 4 weeks so wasn't her & it was a different type of tired) hair falling out, terrible skin, lack of energy or interest in anything, couldn't lose weight despite seeing a PT x3 a week, swimming x2 & eating right (she was 9 months & fully weaned by then) so doc eventually tested for everything & I was diagnosed slightly Hypothyroid. Started on 25mcg levothyroxin but nothing improved & over time was eventually upped to 50mcg. 2012 now & I had the odd good day but making the most of them put me back feeling rubbish the day after. I've been going to the docs continually between 2009 & now! In 2013 we had really good spring weather & I was outside a lot & started to feel like me again, at this time is had no thyroxin for 3 weeks as chemist was having problems getting my brand. Roll on to May and I go to America for a month - still no thyroxin and felt better than I had in years so once home told my doc & she insisted I had a test which when results came back told me I was extremely low & had to go straight back on 50mcg. I argued but did so eventually with her scare tactic comments. Winter arrives I was back to being awful, told my bit D was slightly low take a supplement. I started to with no improvement, doc told me to double it, I did to no difference & by now we're 2015 & my thyroxin had been upped to 75mcg from early 2014. I went to docs about my dry red cheeks & all the usual symptoms of hair loss, no weight loss, exhaustion, constant sleeping, no motivation for anything, no interest in anything, no libido & new symptoms of being forgetful, aching small joints (fingers, wrists,elbows,ankles) pins & needles in fingers & toes. I was told I had roseaca & given cream that did nothing & to up my vit D for the other stuff. Roll on 2016 I had a UTI (first in my life & I was 42). Was still feeling rubbish, still telling my doc regularly & her still insisting it was vit D (remember it was only slightly under all those years ago & ive now been taking the highest recommended amount). She eventually tested for RA due to my achy joints & referred me to Carpel Tunnel clinic for my tingles. I see a different GP for a separate not related issue (deviated septum effecting my breathing) & whilst she's doing the referral for that she gives me the results of the RA which is 'you haven't got RA but I'm afraid you do have Lupus' so I'm referred to a ruematologist. I see him before I see the CT clinic & he tells me I do not have lupus & it's either my thyroid meds need jigging & I may need to go private to a good endocrinologist he knows for the right treatment for me or I could be B12 deficient & if I am it will be the answer to everything. I then see the Carpel Tinnel clinic & they test me saying everything good I've not got CT & as I commented 'well yes I knew that as its in my toes too' they shook their heads in disbelief that i'd been referred for CT! Ruemy doc had signed me off saying you haven't got lupus, email me in 10 days for the blood results. I emailed him & he replied saying thyroid fine continue on 75mcg, B12 significantly low & need b12 injections every other day for 2 weeks then monitor from there. I go to docs & she's fuming he's emailed me & signed me off with no official notes to them. She agrees to do the jabs but asks me to get him to write to them. At the end of the 2 weeks I was told I'd need to have the injection every 3 months for life. The injections helped with the aching joints, tingling more than the other stuff but I did feel slightly better for about 2 weeks after the last injection then everything was back with a bang! Go and ask for jab doc says no we need reumatologist to put it in writing, but then says she'll do this one but no more til he writes. That one jab was at the end of September & I've got nowhere with either the ruematologust or the GP!
From my own research I'm taking it I've got PA & GP agreed with me that yes I do but she needs him to put everything in writing. He has ignored that bit of my emails and just says I need to convince her to give me more regular injections (I think I need 2 weekly) & if not he can give me more than she can but he's not answering how I go about him doing that without waiting months for a re referral!
Does anyone have any idea what I am best doing?
I'm thinking of booking that intravenous shot I was reading about but I'm not even 100% that it is PA I've got as he's never said those words!