What tests should be administered on a regular basis and how frequently for PA and/or B12 deficient patients?

Hi. I was just wondering how often PA and B12 deficient patients should be tested and for which tests? I am scheduled every 3 months to have a B12 test ( doc thinks I might have PA but IF is negative) and TSH (have hypothyroidism and the levels have been changing frequently); but do you think I should also have an MMA, homocysteine, iron (very low normal now), and any others I may not be thinking about right now on a regular basis as well? I have had these other tests but its been longer than 3 months ago. While like most of you I have doctors who are not very familiar with PA and/or B12 deficiency, they are willing to schedule just about any test I ask for. Thanks.

[Nackapan]

You don't need b12 tested once on injections.Only problem is foate often done with b12.

Which is correct at the start but not needed once on treatment.

K have a full bloods count every 4- 6 months now .

Including an iron panel and ferritin.

I need to take low doses of iron ax a maintenence. So needs monitoring.

Vit D tested also.

If they will repeat an IFA test have that done.

One might show positive.

Seems to take a few goes for alot of people.

At least your gp suspects PA and as treatment the same is treating you.

Low b12 gives tge same symptoms whatever the reason.

If dietary tablets will work.

Get whatever you can on bloods .

Once on b12 treatment it either seems to whack other vits snd minerals out of range or eventually won't be absorbed in enough quantity.

At the start all things were in good range including iron and folate. Vit b12 very low.

My vit D was found to be low a few years before.

Perhaps the start ???

Once on intensive b12 treatment via injection my ferritin dropped then my hb.

So needed iron for the first time in my life.

I've never had an MMA or homocysteine test as the serum b12 showed a low level.

So treatment started.

The thyroid forum will say what tests need doing .

The NHS don't do them all??

[Haveitall in reply to Nackapan]

I would agree with all except checking homocysteine. It’s a cardiac marker. I always follow it. The target is around 7. I’m around 10 or 11.

[Nackapan in reply to Haveitall]

Oh yes.I've never been offered it.

I think done if relevant symptoms persist. ??

[Haveitall in reply to Nackapan]

I wouldn’t wait for symptoms to follow it. Ive been following it long before I knew I had PA. If your doctor hasn’t ordered it then advocate for yourself and ask for the test and check it a few times a year. Why would you wait until you have a heart attack or blockage to test for it? That makes no sense. No one tested me for PA until I asked even though my doctors knew I was collapsing and had other symptoms. If I hadn’t asked to be tested I’d likely be dead by now.

[Nackapan in reply to Haveitall]

Was it tested by the NHS fir z certain reason ? As not done routinley

[Hidden in reply to Haveitall]

I agree with you on this. Many years ago my level was up to 12 and that is when doc put me on folic acid. However, they never took me off a very high dosage of it which is another story... Not a good story. I've since reduced it from 2 mgs daily to 500 mcgs. Thanks.

[Hidden in reply to Nackapan]

Thank you!

[Cherylclaire Forum Support]

We are all different, although often treated as the same.My B12 was just below "normal" range - so injections started in early 2016.

My folate and ferritin were found to be low. Although within range, because my hair was falling out and my gums were bleeding even after the B12 injections, both were treated with 3 months of tablets. Both were difficult to stabilise and keep to an optimum level and this situation continued for about two years - so regular blood tests helped me work out what to do when and for how long at what level. No other way to tell. My GP advised me when to supplement. Until the pandemic, I had blood tests every year. The last tests were taken by my latest oral medicine consultant - who thinks I might have signs of vitamin deficiency still (...or again ?) - and I won't get these results until next appointment in May.

Vitamin D is something I now get on prescription along with Raloxifene because osteoporosis of the spine was discovered - this is monitored by a rheumatologist at the local hospital - improvement in this area has recently downgraded this to osteopenia, so next Dexascan is now not for another two years. My treatment, as it has proven sucessful, remains the same. [What a shame this is not also the case for many with B12 deficiency.]

MMA - this was not tested until after b12 injections, because I was rapidly getting worse. It was found to be raised. Functional B12 deficiency diagnosed. Despite then being given frequent B12 injections, it remained raised for three years. On the sixth test, it was well within normal range. Renal problems and SIBO were ruled out. PA cannot be diagnosed from MMA levels but B12 deficiency can - if these two are ruled out, by blood test and fasting series of breath tests respectively.

My homocysteine level was tested and found to be normal. IFab tested negative twice.

All of the above tests were done on the NHS.