Pernicious Anaemia Society
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Bp and low b12

Hi ,

I'm on 3 monthly b12 with Gp . Only well for the middle month. It takes a few weeks for the injected 1mg to kick in , and the month before it's due again to wind down like a clock. Bit worrying my family witnessed me passing out 2 days ago. Did a home Bp and it was 106/61 a little while after the episode. I normally have highish Bp 145/86. I'm on the running down time as b12 is due in 3 weeks. . I looked on line and anaemia can lower Bp .any suggestions?

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Hi Bobonuts you are certainly not alone in "feeling the need" in the run up to your next scheduled B12 injection but as I'm not medically trained I cannot comment on your B.P. experience.

Are you in the U.K?

Do you have a diagnosis of P.A.

Do you have neurological symptoms?

Do you know what your Folate level is?

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I struggle when I am due my injection. I am diagnosed as PA & I also have obstructive sleep apnea. I start going down about 8/9 weeks in & my 10/11 weeks I am very, very tired, unbalanced, clumsy (stumbling/dropping things) & very anxious. I saw my doctor 2 weeks ago & asked him if I could have more frequent injections, but he said he doubted that my B12 was down but agreed to another blood test (still awaiting results) & increased my Gabapentin to easy my pins & needles & other neurological symptoms. Due injection on Thursday & can't wait. Try to speak to your doctor, hopefully they will give you some ways of controlling your symptoms. I am thinking of buying injections if he doesn't agree to more frequent injections. Quality of life very poor in last few weeks for me (& my family).

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Firstly there is no point in testing your serum B12 levels as you have P.A. - unless it comes back LOW. If your doctor insists on testing ask him also to check your Folate level.

Secondly, make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

According to the guidelines P.A. patients with neurological involvement should have

hydroxocobalamin 1 mg intramuscularly every 2 months.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years, had to win my fight against my "one size fits all" doctor for more frequent injections. I wish you well.

Please come back and let us know how you get on.

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Hi ,thanks, yes in wales, yes I have as did my dad. PA .. no intrinsic factor as I have 30 years of U. colitis and mal absorption issues and fast gut. Not on regula meds. Only asthma and alergies. Meds for colitis when it's a flare up. I told the Dr I get pins and needles in arms and hands and restless legs often in the day and very often at night. I have vivid fearfull dreams, and feel out of body foggy and dizzy. And possibly a bit of postural hypotension of extra dizzy standing too long. Early this year I came off Azothiaprin which adds or causes megablastic red blood cells. My bloods were done when I well clear and found to be fairy normal. Great. I took under the tougue B12 and general multi vitamins with Folic acid. As supliment. It worked for a while. Now I'm creeping down to the foggy faze again. I don't know the Folate level but all was well 4 months ago they said. I know folate is important as is Iron in making the red cells but can you over dose on it? And how do I know I'm getting enough or these if my body expels too much. Today a requested blood tests before my next b12 jab, but as I seeing the Dr next Monday she may want to do more or others tests so I got to Waite . On a plus months ago she sent of for me to see a Haematologist. I except it will be next year before that happens. I'm getting very close to self medicate / inject . I'v got loads of nes vitamins,Folic asid ,iron. I could skew any blood tests next week . Sorry this is a long frustrated rant.

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When I saw him two weeks ago I did take my husband who confirmed my symptoms. I have also told the practice nurse who advised me to ask the doctor for more frequent injections. When I get tired I fall asleep (even though I try desperately hard not too)& end up waking up having an apnea because I have stopped brea thing! Just been reading a paper on Active B12. Will also look at the Nice guidelines & take them with me to the doctors. At the beginning of the year I was tested for MS & thankfully the tests said I hadn't got that but all the symptoms are still there but are kind of under control with the Gabapentin. Thanks for your reply.

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