What do I need to do next re: possible pernicious anaemia?

[puncturedbicycle]

Hiya. Got these blood tests yesterday and it seems like I'm anaemic (as I often have been before) but I'm concerned that there's more to it than just needing a bit of iron. As soon as I stop supplementing anything really my levels drop like a stone. I'm exhausted, apathetic, tinnitus has got worse, etc.

My question is what do I do next? Do I need the antibodies test for pa? Anything else? How do I know if I need injections and if I do, where do I get them?

Serum b12 332ng/L (180-914)

Serum ferritin 19ug/L (11-336)

Serum folate 18.7ug/L (3.1-19.9)

Serum d 86 nmol/L (76-220)

I had some bloods done last year for possible Sjogren's (have been to the gynaecologist, dermatologist and dentist for inflammation, swelling, lesions, etc had biopsies and blood tests and everyone is still shrugging their shoulders). If I had a quid for every hour I've sat waiting to see a doctor in the last year...

Also had to have a colposcopy earlier this year for an abnormal cervical smear, which I see is associated with low b12.

Many thanks for your help. x

[sazzyb]

Hi PB, I have Sjogren's, (diagnosed by my optometrist.) Only 60% of sufferers have positive blood tests.

[puncturedbicycle in reply to sazzyb]

Yes, I read that dx is a tricky process and depends on the knowledge and skill of the doc. I'm sorry to hear you have it.

Now I can't even find the ab tests, even though I was referred for suspect Sjogren's. I wonder if they even tested me. Sicca was not my primary symptom and when the doc heard that he didn't seem interested anymore.

[lucylocks]

Sorry to highjack post, but usually on this forum they say ferritin should be 70 or 80 for thyroxine to work, but my Nutrionist like you says it should be 150. Mine is 65. Could this be the reason I am feeling exhausted.

Thank you browny

[puncturedbicycle in reply to lucylocks]

Absolutely. Low iron can make you feel awful already, never mind if it starts interfering with your thyroid treatment.

[puncturedbicycle]

reallyfedup123 I've read that up to 80% of the b12 which shows up on the test is not necessarily available to use, so a b12 in range is not indicative of whether or not you're deficient, thus the question about the antibody test. healthunlocked.com/pasoc/qu...

I don't quite understand the d result. It was 10 (severely deficient) and now it is considered 'sufficient' or 'replete' so I think the range given is for 'normal' levels of d if that makes sense. I agree that I need more though. I've been supplementing 2500iu per day for a year or two but stopped all supplements before the tests.

I also wonder about the folate and whether or not it is an issue even though it's in range: nutraingredients.com/Resear...

[lucylocks]

Thanks reallyfedup123 that really gives the info. I was looking for. I could not understand why everyone was saying 70 was ideal.

My range is slightly different, 15 - 300 and level 65 but obviously my level needs to be nearer the 150. No wonder I feel exhausted.

Can you suggest a good supplement please. I am at present using Spatone but not sure it is strong enough.

Many thanks again for enlightening me browny

[Hidden]

There's a better test for B12 than the standard one - it's called the Active B12 test and, like it sounds, measures how much B12 you've got available for use. The other thing is that I believe high folate can mask B12 deficiency, i.e., make your B12 levels look better than they are. So I wouldn't rule out PA just yet - I think I'd be inclined to push for more PA testing. Antibodies would be a good start.

[puncturedbicycle in reply to Hidden]

Hi LilyMay. Many thanks for the info. Will look into it.

I did think about the folate thing, but I wasn't sure if that applies to folate outside the range or if it can just be on the high side and still affect the b12.

At this stage I'm sorry to say I'm just looking for anything that might be making me feel so awful, but it could just be straight-up iron I need I guess.

I'm afraid to start supplementing now in case I go for the active b12 test. Does it matter if I do the antibody test or the active b12 test first?

[Hidden]

How long have you been off the supplements? You'd probably benefit from further more sensitive B12 testing but only if you've been off the supplements a while. You certainly can't know if you have PA or B12 def based solely on the useless serum B12 test. But how to convince the doc? Difficult because that's all they see.

I think you said in another post that you were top of the range, and when you stopped supplementing you dropped down to the current low level. What was the timeframe between the 2 tests?

[puncturedbicycle in reply to Hidden]

Thanks hampster1. I have one set of tests in front of me - I think I should get a ring binder as they are always getting mixed up - where my b12 was 861pg/mL (191-663) but that was from 1/13, so almost a year between that test and the most current, which are from 12/13.

I may have been supplementing in Jan as I was unaware that my b12 would be tested (this was on referral to oral medicine due to swollen mouth).

I was seeing a private doc who put me on all kinds of supplements which, it turns out, largely contain b vitamins, b6 in particular. And I was taking lots of different ones, all of which seemed to contain b vitamins, so I was wondering if that was why I got those high results.

I may have another more recent test somewhere. I'm not sure. I'm terrible at doing things, finding things, figuring things out. I'm in a very bad way with my cognition and my moods. It is taking me all day to get ready to take the dog for a walk and I've been in tears on and off for the last couple of hours. I'm supposed to be meeting my partner tonight to see a book reading and every time I think about it I start crying.

I don't think I will bother trying to convince my gp with these normal results, so I'm not worried about that. I plan to go private.

[sazzyb]

That's great info, thank you! I really can't get my head around why their low level range has to be nearly rock bottom.

[naveed123]

I think you should take multivitamin and minerals on regular basis.If possible inject neurobion injection once in a month.It will increase your vitamin b12 levels.

[puncturedbicycle in reply to naveed123]

Thanks naveed123. I've been supplementing for over two years with vitamins and minerals recommended by my doctor, incl high doses of b vitamins. You have to stop supplements for six weeks or so before testing. Taking folate can mask b12 deficiency, so I wonder if my higher folate result means something.

I don't think a b12 injection once a month would be much help to someone with pa. I believe the injections need to be weekly.