PA from Autoimmune: Just was diagnosed... - Pernicious Anaemi...

Pernicious Anaemia Society
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PA from Autoimmune

runnergirl24
runnergirl24

Just was diagnosed with PA but not PA from a Gastric bypass surgery. I went from a B12 of 86 to 280. I do feel better but my Endo dr said it wasn't increasing enough. I get 1 injection of B12 a month and I am a avid runner (training for marathon now). Can anyone tell me if strenuous exercise can cause your B12 not to increase enough even with injections? Also, has anyone had high Gastrin with PA? Mine is 270 (normal I believe is 170).

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Gambit62
Gambit62Administrator

after an injection your B12 will be off the measurable scale - it will then fall over time as your kidneys filter out the excess. How long this takes varies from person to person.

So, not that the shots aren't raising your B12 levels but that your kidneys are efficient at removing excess B12 so your levels are falling more quickly - so you may need more frequent injections - on average people need levels around 1000 after injections but this is an average with some people needing to keep levels constantly above measurable range and others being perfectly fine in the normal range - so your endo really needs to go by how you are feeling rather than the serum B12 results.

Serum B12 is a useful test for diagnosing an absorption problem but isn't a test that can be used to manage B12 levels after injections have started.

PA is actually an auto-immune condition which leads to B12 deficiency which will eventually lead to anaemia and a lot of other unpleasant conditions including neurological and neuropsychiatric conditions, cirulatory disorders etc. Gastric by-pass surgery is another condition that can affect B12 absorption and that then leads on to all the other problems. High gastrin levels are a strong marker of PA as one consequence is destroying the cells that produce stomach acidity - gastrin is a hormone that is produced to stimulate production of stomach acidity so if your stomach acidity isn't being raised then you will continue to produce gastrin, leading to high levels. There was some talk a few years ago about using gastrin levels as a diagnositic tool but not sure where that has got to.

Sports science seems to show that high performance athletes need more B12 than others so attention to B12 rich foods is part of the nutritional science used with high performance athletes. If you have PA, however, this is a bit irrelevant as you won't be able to get enough B12 from your food anyway - unless you are taking large quantities of liquidised raw liver (ugh!)

Hi there, sorry but can I ask you? my husband had low levels of B12 so much so he had to have 5 injections he had to wait a couple of months to see if he needed any more as his IF was negative, his level went up to 405 he still has the fatigue pain and numbness in his fingers and feet, low mood. the GP has said as his levels are in the normal range he doesn’t need any more. Do you think he should go back and ask for more injections.

Gambit62
Gambit62Administrator
in reply to GillyGangGong

GillyGangGong GP is wrong - though getting him to realise that is likely to be very difficult.

Yes, go back - point out that the current standards are that treatment is for life and isn't based on testing. If he has neurological symptoms - the pain and numbness - then maintenance doses should be every two months.

Assuming UK based your GP can access the BCSH guidelines through the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

For future reference - it's best to start your own thread rather than asking a question on someone else's as it means they will get bombarded with all the responses. You can mention someone in a post by typing @ followed by their name (without a space) - this brings up a list of forum members and you need to select the right name - sometimes it can be quite slow for the name to come up

Thanks he will be going back to Gp next week and sorry guys!!

Thank you. This was helpful.

Hi I read in the book the clever guts diet that lots of running does have a negative impact on your gut .. it’s a really good book with lots of tips so maybe try that. I’m trying to adopt the method to help with my PA. good luck 😉

Thanks. I willl read it. I wondered about running n gut issues myself. This may answer a lot of my questions.

Yes apparently it’s common with athletes and long distance runners whom get ill often before races.. try looking up on line as well maybe? Good luck

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