Hi all...thanks for the helpful comments and posts, been reading and of course signed up for membership with PAS too.
Following on from my post a few days ago I have spoken to my GP today. (B12 at 120). He says he can't see me sooner than Mon as they are waiting for further test results re absorption (has to be done at another lab, as more complex...etc). One result is back, still awaiting another. Once they know that they will be able to diagnose PA or not...
Just wondering...what is the test called they are doing and what should I do if it comes back negative?
I had a MS type neurological condition in summer 2014, from what I've read & glean from this wonderful board this has kicked off PA in my immune system and it's taken a while to deplete my B12 reserves (doc says B12 levels were normal 20 months ago at onset).
Trying to push for injections ASAP but nothing will happen now until Monday...at the soonest. Should I be expecting further tests before treatment?
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Sunshine78
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There are quite a few tests, they will probably be testing for intrinsic factor and parietal cells. But if they come back negative you can still have PA. They are flawed and the parietal cell test is no longer recommend, but they do it! There are others too. Look at all the information available on this website. Check out bcshguidelines.com as well.
I'm still learning about this myself, so other more knowledgeable members will be able to help you more. But bare in mind that treatment should be based on symptoms and not test results. The bcsh guidelines say thatt. Also as you have neurological symptoms and a very low b12 injections should be immediately. Again, see the guidelines above. By the way, I doubt your b12 was 'normal' 20 months ago. The level is too low and unreliable. Good luck!
You need to start treatment as soon as possible- alternate day injections until no further improvement of neurological symptoms then 2 monthly maintenance minimum. BCSH guidelines very clearly state to start treatment based on symptoms. As others have said, the IF and GPC tests don't have to be positive to have PA but this is poorly recognised by GPs, even though in guidelines. I had 'normal' levels with neurological symptoms that came and went for several years before my levels finally dropped to below the reference range and still my GP was not going to treat it. It requires some assertiveness with some GPs. Make sure you know the guidelines before you go. Also take someone to support you. Both those helped me.
"doc says B12 levels were normal 20 months ago at onset"
I have read that it is possible to have severe B12 deficiency with b12 blod levels in "normal" range.
The following articles/documents make it clear that people who are symptomatic for B12 deficiency should be treated even if their b12 blood levels are "normal".
Google "BCSH Cobalamin and Folate Guidelines" I found page 29 useful. See also Summary of key Recommendations on page 2,
"what should I do if it comes back negative?"
If the IFA(Intrinsic Factor Antibody) test comes back negative, I hope your GP is aware that it is possible to still have PA. The BCSH Cobalamin and Folate Guidelines mention Antibody Negative PA on page 29 and elsewhere in the document.
Download this document that I put together - frankhollis.com/temp/Summar... - and look at the linked documents. It includes the important facts that you need to know (and that you may need to explain to your doctor).
What is your diet like? Are you vegan or vegetarian?
To obtain b12 naturally via food you need to eat red meats, fish, poultry, eggs and dairy products .
You need healthy levels of folate (b9) to help process the b12. Folate is found naturally in a wide variety of foods, including vegetables (especially dark green leafy vegetables), fruits and fruit juices, nuts, beans, peas and grains. Spinach, asparagus, and Brussels sprouts are among the foods with the highest levels of folate.
Have you had gastric surgery or do you take antacids or are on proton pump inhibitors?
Are you diabetic and on the medication Metformin?
Each of the above can affect absorption of b12 through the stomach - if that is the cause of your LOW level.
Do you take vigorous exercises or participate in prolonged extreme sports? This can cause depletion of b12 and athletes are known to take "energy drinks" etc to boost their b12 levels
I am not a medically qualified person and there are others on here that will have given more expert advice but if you say "no" to all the above then your doctor needs to look further.
I'm none of the above. I eat meat and have a well balanced diet. I'm on no medication and taking part in exercise is something I dream about (especially running) but i'm unable to do anything strenuous.
The only thing my GP thinks this could be linked to is a case of Transverse Myelitis (inflammation of the spinal cord) nearly 2 years ago. I am waiting for my medical records to be copied so I can see whether my B12 was tested at the time. Until then I was a healthy, energetic person. People I'm connected to who have TM says it's common for B12 levels to drop after having it, no one has any idea why...
Well you've eliminated the most obvious causes of b12D Sunshine78 and I just hope you can get to the bottom of things and wish you well for the future.
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Update on blood test - sorry long post
Where could I get a genetic test done for B12 non absorption please?
Finally had blood test
Re testing all patients on b12 injections
