Blood test results

[ednotdave]

Hi everyone. I was diagnosed with B12 deficiency & macrocytosis and had loading doses of Hydroxocobalamin. I now have 2 monthly injections but find it's not enough, but can't get my GP to take it seriously enough! My bloods are as follows: Serum B12 (189 - 883) was <83 now 928, Serum Folate (4.8 - 19) was 15.3 now 9.1, Serum Ferritin (22 - 275) is 35, RBC (4.5 - 6) was 4.01 now 4.78, WBC (4 - 11) was 4.4 now 8.5, MCV (80 - 100) was 11.7 now 99.4, MCH (27 - 32) was 37.4 now 32.4, IFA is Neg, PCA is Pos. Apparently if IFA is Neg, it's not PA, but what about the PCA being Pos? Also, I think my Folate and Ferritin should be higher and the MCV and MCH should be lower. What do you all think? Many thanks.

[Gambit62 Administrator]

I can't comment on the actual results of your tests but it isn't uncommon for people to find that the injections just aren't frequent enough for them and symptoms return well before the next shot. How were your loading shots done - if you have neurological symptoms then they should be done every other day until you don't show any improvement - think you have probably been through that loop though if I remember previous posts correctly.

I think PCA being positive actually means the opposite of what it intuitively sounds as if it should but may not be correct on that ... and from some of the reading I've done the results of the test may give false positives - ie indicate that everything is okay when it isn't.

Like you I haven't had much luck trying to get my GP to listen to me, so, like so many others have gone off and found my own solutions - which was a nasal spray which seems to be doing the trick for me. I've gone from struggling to walk because I felt so unstable to being able to run up ladders to prune the grape vine and so many other things - I've become a real B12 bore. Last year I thought I'd have to wear trainers for the rest of my life because I felt so unsteady in anything else but now I'm quite happy in sandals and bear feet. My mood is much better as well - still get stressed but managing to cope without going and crying in the loo at work. Other people have noticed the difference in my health and it happened quite quickly - I'm using about 2-3 times the normal dosage of the spray but I do feel in control of the condition myself rather than at the mercy of generally unsympathetic medics. It's quite an expensive option at the moment but I'm hoping that if I let it build up for a few months then I will get to a point where I can lower the dose a little. I'm now exactly 2 months since my last shot, and still feeling quite alert at gone 22.00. Before hand I would have been struggling to stay awake in the afternoon and starting to feel quite unsteady on my feet.

As far as I'm concerned at the moment the job I want the medics to do is to periodically check that there isn't any other autoimmune problem going on and other than that leave me alone. I haven't had a full diagnosis but the important thing to me is that the solution really does seem to be working and I feel that I have a life rather than being consigned to the ranks of zombies for about 2 out of every 3 months.

[ednotdave in reply to Gambit62]

Thanks Gambit.

[sazzyb]

Hi, your folate and ferritin are too low. Folate should be back up at 15, Ferritin should be at 70, minimum. Sorry I can't help with the other results.

buzzle.com/articles/ferriti...

[ednotdave]

Thanks Sazzy, that's what I thought. Any thoughts on PCA Pos, anyone?

[Hidden in reply to ednotdave]

I have PCAb positive IFAb negative PA. Because the IFAb test is so unreliable (only 50% accuracy) the new guidelines recognise "Antibody Negative PA" or "AbNegPA". This should be treated in the same way as those who test positive.

The new guidelines unfortunately discount PCAbs as they can be positive in other conditions, but I think that's a shame because they are significant. Because your PC's are responsible for producing IF and gastric acid in the stomach, both of which are vital for the absorption of B12 from food. And if you're not producing IF, then your body wouldn't have any reason to make IFAbs!

I agree your MCV and MCH are still too high. You would benefit from adding a good B Complex (not too much B6 in it, less than 60mg say) and folic acid, and something to raise your iron up a bit. What is your ferritin range? Also make sure you get vit D tested as this is often low as well. You may have to ultimately seek more frequent injections, but try improving the co-factors first and see how you go.

[ednotdave]

Thanks Hampster, my GP won't give injections more frequently than 8 weeks (it was a real battle to get that!) so I'm going to get some over the counter in France or Spain next week. Meanwhile, I've emailed the surgery to ask for supplements to top up the ferritin and folate levels.