A surprise from my last visit to the GI

[BethCam]

To start, I remind you I am in the US and so there are differences in treatment, and am aware that retesting b12 during treatment is considered unnecessary and unreliable.

I just wanted to share a statement my GI doctor made. After my initial 6 loading doses, my b12 level was about 790. 7 weeks later (no injections) it had dropped to about 400. When I followed up with my GI after a few injections once a month, I told him I felt an increase in neurological symptoms. He said that while numbers are well within normal range, he thinks the drop may mean that the injections are probably not often enough. He has seen that many pernicious anemia patients (or otherwise b12 deficient) with neurological symptoms don’t function well at levels below 500 with symptoms returning when injections are spread out. So he increased my injections to make sure I stay above that threshold in the future and if GP does retest to make sure it isn’t under 500.

[Cherylclaire Forum Support]

How rare it is to hear about a doctor treating with B12 who is working in response to the patient's reactions, and to previous observations.

The initial B12 level, considering that you'd just had 6 loading doses, was low. The fact that B12 then disappeared quite rapidly brought him to the correct conclusion : that you need more frequent injections.

At this point, in the UK, I would be hoping that the loading dose would be restarted and continued until no further improvement could be had, which would be following UK guidelines, since you have neurological symptoms. Sadly, even here, this is rarely adhered to.

I was lucky - because GP had my methylmalonic acid (MMA) level tested despite high B12 reading after 3-month maintenance injections started. Because MMA was raised, I was put back onto injections at loading frequency.

I wonder what your initial serum B12 test result was.

Do you have a confirmed Pernicious Anaemia diagnosis ?

[BethCam in reply to Cherylclaire]

My original b12 was “<50” so doctors keep saying undetectable. My initial mma was 22,500, but was normal after loading doses. i was positive for both intrinsic factor antibodies and parietal cell antibodies, so yes I am confirmed woth pernicious anemia).

[Sonnamm in reply to BethCam]

hi... hv you done intrinsic factor test after loading doses... want to know if it can change to negative after treatment or remains positive only... coz i had done the intrinsic test after injections??...

[BethCam in reply to Sonnamm]

It was done after loading doses. I did ask the GI and he said that is something that doesn’t change from positive to negative.

Although, I have read some there can be false positives it tested too close to an injection. So in that case, I would surmise it could.

[Cherylclaire Forum Support in reply to BethCam]

Good - your GP seems to have acted quickly and requested the right tests early.

Very low B12 and very high MMA, alone or together. would have probably been enough to assume PA if no dietary reason, but IFab test and parietal cell antibody test coming back positive ensures irrefutable PA diagnosis. IFab can often give false negatives (40-60% of the time) and BCSH guidelines do not recommend gastric parietal cell antibody test, because it can show a positive in some "normal" folk, too.

You seem to have the whole set (lucky/unlucky).

I would suggest that you then ask for a print-out of these findings if you haven't already got one - and keep it for "just in case". ( GP moving or retiring, you moving to a new catchment area , loss of records etc) This is largely due to the amount of people here in the UK who have recently had their NHS injections stopped suddenly.

You seem to have a good team there. So glad. You must've been on your last legs !

Wishing you ongoing best treatment and speedy symptom management.

[BethCam in reply to Cherylclaire]

While I was having tons of symptoms, i wasn’t near as bad as many here. It took a long tome for me to realize something was actually wrong.

[Cherylclaire Forum Support in reply to BethCam]

Relieved to hear it.

How about your folate, ferritin, vitamin D, thyroid results ? Look for low within range as well as below-range. Might help to check- these are the ones most often affected alongside B12 deficiency.

[BethCam in reply to Cherylclaire]

Thyroid fine. Folate was actually above range. Ferritin was low (7 but i dont remember range). He will recheck numbers in June (plus I have requested D). For now added a multivitamin that includes iron and D.

[MoKayD]

I'm U.S. also. My doctor likes to see his PA patient's B12 levels above 1,000. Anything below that and you need a shot.