Could I have some advice please, I was diagnosed with PA a couple of years ago, my daughter who is 24 has had symptoms for some time, fatigue, pins and needles, sore arms etc. Her B12 results came back today, GP said normal, level 247, is this normal, it seems low to me? Should she try suppliments? If so what.
Thank you in advance for your help.
Hi,
My top tip would be to contact the PAS. You can leave a message and they will get back to you.
pernicious-anaemia-society.... 01656 769467
From what I have read it is possible to have severe B12 deficiency with levels that are within normal range. Do you know the reference range for your NHS area?
Recent documents make it clear that patients who are symptomatic for B12 deficiency should be treated even if blood tests are normal/negative.
ukneqas-haematinics.org.uk/...
bmj.com/content/349/bmj.g5226 useful summary points
Google "BCSH Cobalamin and Folate Guidelines" I believe this is what the NHS should be using. Sadly some GPs and consultants are not aware of these guidelines.
useful websites/books
Could It Be B12 by Sally Pacholok
Pernicious Anaemia; The Forgotten Disease by Martyn Hooper
Living with Pernicious Anaemia by Martyn Hooper
I posted a lot of info on romulusandremus thread "B12 Injections". You may find some useful info on that thread.
"Should she try suppliments?"
Speaking from personal experience, I only started to supplement myself as an absolute last resort when I had exhausted all possibilities within the NHS. I never wanted to self treat but did not receive B12 injections other than one set of loading injections a few years ago. I am symptomatic for B12 deficiency.
Once you start to self treat it is very difficult to get a diagnosis from the NHS because test results will be affected. There are other tests that can help diagnose b12 deficiency or PA eg IFA (Intrinsic Factor Antibody), MMA, Homocysteine, Active B12 (transcobalamin). These test are available privately if Gps are unable to order them. The results of some of these tests may be compromised if a person is already taking B12 supplements.
I think the reference range for treatment is 191. Thank you for your help, will read docs and go back to GP.
247 seems low to me, but that is based on my experience of having similar symptoms and not getting tested for B12 deficiency until I was about 10 years past your daughter's age. My results were 220. That was also considered within the normal range. Thankfully I was treated anyway.
Generally speaking we start out with a lot of B12 in our bodies as children and the level slowly drops over time. Unfortunately there is not an age-related reference range used that could help your doctor realize that 247 is too low for someone just barely out of their teens. There is also a lack of understanding by many medical professionals that B12 deficiency can cause neurologic symptoms well before anemia occurs. Most doctors are usually aware that PA often does run in families though. You might want to bring that up, in case this particular doctor has forgotten.
Thank you, will go back to GP, looks like another battle!
If you find you are having a battle and sadly many of us on this forum have had difficult experiences then this uk charity may be able to help.
hdapatientcaretrust.com/ 020 7935 8366
There is also an online contact form on the website.
They give second opinions on diagnosis and treatment. As far as I'm aware people who use them need to provide a full medical history.
Once again thank you.
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
How does it feel to have too much B12?
seeing neurologist, advice on b12 injections welcomed…
