Hi everyone, I posted about a week ago with -
"I know I have PA, my GP says I don't!"
SORRY, THIS IS A LONG POST, SO THX FOR YOUR PATIENCE
First of all, THANK YOU ALL SO MUCH FOR REPLYING, YOU MAY HAVE SAVED MY LIFE.
Secondly, sorry for the lack of replies/acknowledgement of your time you all took to help me out. This is because the last week has been like a nightmare. I have still yet to be "officially" diagnosed...
My mum and I spent time early last week preparing all the fantastic information you posted (guidelines/BMJ article etc) and wrote a letter for my GP. It took ages, as my concentration levels are next to zero. Mum delivered it on Tues, I saw my GP on Thursday morning who I think has now got the hint that I have B12 deficiency (still awaiting my IF antibodies, but will take result with a pinch of salt).
My GP was very jumpy and we didn't have much interaction (I found it very hard to look at him and my mum was there) and said he was going to get me admitted to hospital "in case I'm missing something". His letter for the admitting doctor said "possible B12 deficiency in line with multiple symptoms, although serum B12 is normal" NB I'm in the "grey zone", although it has dropped by nearly 200 in a few weeks, now at around 260.
I had begged him the week before (as it does no harm) to start me on B12 injections, which he did (to "humour me" and only at my instance as my neurological symptoms were getting worse. The neurologist said it was fine). I have now had 6 doses of hydroxocobalamin 1mg/1ml on alternate days. My neuro symptoms are improving, though still getting some pins/needles and burning sensation in my toes, some dizziness and definite fogginess.
I want to continue with these every other day until I feel my neuro symptoms have improved as much as possible (and in line with BNF UK guidelines). I am self injecting as I am a practice nurse and do this every day in my job. Not as easy to stick a needle into yourself, though!
My issue just now is I am getting constant chest pain. I have had this for around 2 weeks, sometimes I get a migraine with it (I also have a constant, mild headache). It was so bad on Thursday, I thought I was having a heart attack and had to call 999. I got all the tests, all negative. The 2 times I was in hospital on Thursday, I asked if I could see a haematologist as my GP and I both felt I had PA - four doctors told me "your B12 is fine" (argh!!) THEY DO NOT HAVE A CLUE ABOUT THIS DISEASE!
I explained about the "grey area" and that PA can cause heart problems. They all said it was stress or indigestion. My reply "I know where my heart is, and it's hurting" - not one doctor prepared to take it further, passed my back to my GP for referral, whom I am getting a telephone consult with tomorrow.
I have a 48 hr monitor on from palpitations clinic, as that is what I initially went to my GP for a couple months ago.
So, my questions are
1. Is it just the anaemia that is causing my chest pain? My HB was "low normal", my ferritin was 10, so currently on iron supplements. I am VERY, VERY concerned about this.
2. Should I be worried about this pain? It is horrendous, sometimes... has anyone else experienced this? I am worried that I will have permanent damage.
3. I am concerned about my management, or lack of .... I will stay on B12 alternate days as long as I feel the need, but my GP should, at the very least, be taking urgent advice from a haematologist re my symptoms and referring me/admitting me directly to haematology.
4. I have asked my GP to find out re extra vitamins, ie folic acid. I believe you should be on 5mg of this, is that daily, just while you're having injections, or for life?? Also, I've been told I have to take vitamin C as it will help absorb the iron.
5. What bloods should I be getting? I think I should be getting my TFTs/cortisol rechecked, also aware U&E should be done (for potassium levels, got this at the hospital and it was OK).
6. Can I stay on my HRT patches, ie is it safe?
I am also awaiting a colonoscopy for "unexplained anaemia" and am now freaking out about bowel cancer as I have had these symptoms for years.
Any advice would be so, so grateful. Thank you all, I don't know what I would have done without you. I am sure I would be in a really bad way, with increasing neuro symptoms and lots of doctors scratching their heads and ignoring the big neon "This woman has PA!" sign flashing over my head! Sorry if any of this is garbled, still very hard to concentrate.