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Pernicious Anaemia Society

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Links to scientific papers, medical journals etc

Dfthbhjj profile image
7 Replies

Hi,

I have an appointment next week with my doctor who has recently stopped my B12 injections. I was just wondering if anyone can provide links to scientific papers, articles in medical journals etc that may help me. In particular articles that state :

1)That once B12 injections are started the serum b12 level is not useful.

2)The fact that up to 50??% of patients that test negative for intrinsic factor antibodies can still have pernicious anaemia.

Any other articles that may help my support me in getting my injections reinstated.

I went for a blood test today to test for serum b12 but the nurse couldn't find a vein (this happens fairly often) so have to go back next week. I had my last injection 4 1/2 months ago and am really feeling rubbish. I just hope that the serum b12 isn't just "within range".

Can anyone explain what happens with regards to the body storing b12 but it not being available at a cell level for use? Someone mentioned this before as the reason the serum B12 level can be fairly high once you are having injections but you can still not have enough at a cell level for use.

Basically I'm worried that the serum b12 test will show the level has being just about in range and then my GP will say the oral supplements are working. Surely if they were working then the level should be sustained at the level it was when I last had a test a week after the last injection I had?

I intend to start self injecting but want to wait until after I've had this latest blood test, otherwise my serum B12 will be high and there's no chance she will reinstate the injections.

Anyway I'm waffling on a bit, but if anyone can provide any links as stated above then I would be very grateful. Thanks.

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Dfthbhjj
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7 Replies
Bellabab profile image
Bellabab

Next time they cannot find a vein in the inside bend of the elbow, suggest they try the back of the hand where it is almost always accessible.

B12life profile image
B12life

this is a great article!

2nd page has a list of misconceptions.

I made a 1 page summary letter stating the key points. Then highlighted them in the article. This makes it easy to read.

Then @sleepybunny has a link to a template for a letter to doctors you can use,

As well as additional links.

I suggest using that letter and this article I listed.

Keep it that simple yet clearly defining the need for injections or the neurological damage will become permanent!

B12 is responsible for cell generation. Our cells regenerate periodically, approximately every 120 days, without b12 the cell generation is impacted.

GW1000 profile image
GW1000 in reply toB12life

I can’t see a link - wondering if you forgot to add it?

GW1000 profile image
GW1000

I find this helpful

bmj.com/content/bmj/383/bmj...

I think the NICE guidelines also mention that it’s not recommended to test B12 once on treatment.

B12life profile image
B12life

appologies!

pmc.ncbi.nlm.nih.gov/articl...

Cherylclaire profile image
CherylclaireForum Support

Bruce Wolfenbuttel (see B12life's link) always worth reading.

Sleepybunny also a fan. Sleepybunny and WiscGuy both have lately found some recent research that might help - have a look for posts from them with links.

NICE guidelines, given that they are advice for medical professionals, worth quoting as this should already be recognised as having value by GPs. Also recent.

Get out the highlighter and good luck !

Sleepybunny profile image
Sleepybunny

Hi,

If you're in UK then these threads I started might be useful.

This one discusses the recent increase in UK forum members having their B12 injections stopped or swapped for oral B12.

Is this the tip of the iceberg?

healthunlocked.com/pasoc/po....

This one has useful links for UK forum members struggling to get adequate treatment.

Patient Safety

healthunlocked.com/pasoc/po...

If you have time, maybe you could click on Posts tab (top left of screen on computer) then put "injections stopped" in search box to find forum members who've had similar experiences.

Basically I'm worried that the serum b12 test will show the level has being just about in range and then my GP will say the oral supplements are working. "

Blog post about being symptomatic for B12 deficiency with normal range serum B12.

b12info.com/your-serum-b12-...

Link about writing letters to GP about B12 deficiency

b12info.com/writing-to-your...

I'm not medically trained.

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