Hi all new to this forum, was kindly given details of the PAS as I thought I had a thyroid issue and was on that forum until I posted my blood results. They directed me to B12 deficiency sites, I have been on many including Martyn's wonderful site and read all the info on this and Dr Chandy's site and I know I definitely have PA. I emailed/called Martyn & he called me back the same day. He says he hears my story every day...
I have a smorgasbord of B12 symptoms and a long medical history that now points to this. No doubt, very like a lot or most ppl here, I have had this for years.
Pins and needles, burning feet
Post natal depression (after both kids)
Eat no dairy & very little meat
"Growing pains" when I was going through puberty
Last few weeks, chest pain, palpitations, constant headache, visual disturbance, confusing, memory problems, mixing words up, leg weakness, tremor, balance problems, bladder issues etc etc
To name just a few....
My B12 has gone from 423, to 362 to 264 in a matter of weeks. My ferritin is 10 and I was told that I was a "bit anaemic" and should eat more meat! FBC "normal".
I have researched, read, absorbed and digested the literature, read the online info, reade Martyn's book and Sally Pacholok's book, read the updated guidelines from the British Committee for Standards in Haematology etc etc.... I could write a book myself. All of this information (backed by research) says that "neurological manifestations precede (sometimes by years) changes in the blood; a normal serum 12 does not rule out PA & you must treat immediately so as to prevent neurological damage".
My GP says that I don't have it and that they (GPs) are really good at diagnosing PA!!! He refused to discuss it!
The irony of this all is I am a Practice Nurse and have been working with GPs for the last 16 years! I give B12 injections daily. Argh! I thought I knew about this condition but realise I know nothing!
Meantime, last week, my health is going rapidly downhill. Struggling to work and look after my kids. Went into work of Thursday, my day off. Crying in the office with practice manager/senior GP telling them I have PA & my GP says I haven't (my boss practically mocked me when I said this as I told him my blood results, showed him all the info I printed off re inaccuracy and STILL he didn't believe me! ) They asked if I could phone my GP as "a concerned boss". My surgery phoned a few hrs later to say the GP had rang the neurologist who had agreed to a course of B12 injections as it "wouldn't do me any harm" (like I don't know that!).
So, I have had two so far and due to have my third tomorrow (self injecting, brave me!) I am already feeling a bit better.
I am also iron tablets, which are delightful. Instead of pale, loose stools I now have black loose stools (sorry, TMI)
Sorry to prattle on so much, is probably the same as everyone else's story.
My questions are :-
Should I be getting and further blood tests? I have intrinsic factor/parietal cells checked on Thursday plus I asked the nurse to repeat my B12, folate, ferritin (she was trying to fob me off, but I didn't leave until she marked it on the form). What else should I be getting? I've read about other things like homocysteine, cortisol, vitamin D etc....
Also, what regime of hydroxocobalamin should I be on? I am going to inject every other day for 2 weeks, not sure about after that? The guidelines say continue up to three months or until the neurological symptoms don't make any further improvement. So, stay on every other day?
What else should I be taking? Assume folic acid (think Martyn mentioned this should be taken with hydroxocobalamin). Other B vitamins? Pro biotic? Read something about vitamin C?
I will be taking all the information and guidelines to my follow up appointment on Thursday when I will be placing it on my GPs desk & ask him to read it. I think I will wait in the waiting room til he brings out my prescription...
ONE LAST THING BUT VERY IMPORTANT. My 7 year has long standing constipation. She had been complaining of tiredness recently and "sore feet", "my legs feet weak" and last week she said her leg felt like "it wasn't there for a bit". I am now very worried about her. In Sally Pacholok's book, she has several "red flags". In fact, so has my partner. I have advised him to get tested, too.
Thank you for reading. Any tips I would be really grateful. And if anyone is in Glasgow, maybe we could meet up? Or do some of you do that already?