Last year I was diagnosed with PA. I have been taking oral B12 (no injections, Doctor refuses despite PA diagnosis). Even though I take B12 supplements, I still have symptoms and feel rather terrible. My B12 level is 630 and folate 18.9. My MMA is 99 (ref range 0-378) and homocysteine 6.3 (ref range 0.0-15.0). Are my MMA and homocysteine results normal because my B12 is normal? Should I have been off supplementation for a while before doing these tests? I feel since these were normal that my hematologist won't repeat them in the future. Parietal cell level 86.4 (ref range 0-20) gastrin 2680 (ref range 0-115). IF 1.1 (ref range 0.0-1.1). Everything on CBC is normal for now. Despite normal b12 levels can I still have PA symptoms? Any insight on what I should do pertaining to MMA and homocysteine?
Thanks!
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Ashley8
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Hi Ashley8 what kind of doctor refuses to give B12 injections if you have been diagnosed with Pernicious Anaemia?
I'm not a medically trained person but it seems to me he/she is treating you for a B12 deficiency because of your vegetarian diet rather than for P.A.
Have you thought to join The Pernicious Anaemia Society? It costs but £20 for a year's membership and it's possible that they may intervene with your doctor to get you the treatment you need.
Hi thank you for replying. It was my hematologist that diagnosed me with PA. I think he based it off my parietal cell levels and my low B12 at the time of 210. He implied during my last visit he would give B12 injections but didn't. I'm actually in the US.
Notice you are in US - high dose oral is licensed as a treatment there and it can be quite effective but it certainly doesn't work for everyone.
MMA and homocysteine are normal because your cells are getting enough B12 to manage the processes that recycle them into useful building blocks properly.
Difficult to know what is causing the fatigue - generally it's symptoms that count when managing B12 deficiency rather than test results as the ranges post loading shots seem to be significantly different from the normal population ... and it certainly isn't macrocytic anaemia that causes all the symptoms either.
Could your haemo be persuaded to look into using injections to treat rather than tablets? if only as a trial to rule out the method of treatment as the problem?
Are they looking for any other causes/possibilities? The symptoms overlap with so many other conditions and it is very common for more than one auto-immune problem to be going on at the same time making things much more difficult.
Ah I understand. Thank you for explaining. If the cells are able to recycle the B12 properly, could it still be PA though? Or do the cells not have the capability to do so in PA?
I'm not really sure what else it could be honestly, my GI Doctor suspects I have atrophic gastritis and I've read these two conditions go hand in hand. Is that correct? The reason they suspect this is because my gastrin levels are so high but Zollinger Ellison is another possibility as well. I have many digestive symptoms and a general unwell feeling and have for years. I was recently diagnosed with epilepsy and hypothyroidism but my abnormal TSH result of 8.29 corrected itself (I didn't use medication). I don't know if any of these other conditions can overlap with PA or atrophic gastrtis.
I will be calling today and asking again about the injections. I don't understand why they make it seem like they have an issue with it. it's so frustrating
Yes, your hypergastrinaemia (high serum gastric) could be caused by autoimmune Metaplastic gastric atrophy (AMGA, the base condition behind Pernicious Anaemia) or by ZES (Zollinger-Ellison Syndrome). A gastroscopy should be able to tell these two apart. ZES tends to be associated with problems with the MEN-1 gene, so you could get tested for that.
AMGA causes low stomach acid (achlorhydria) which can cause digestive problems. I fix them with about 40 ml of lime juice with lunch and dinner.
ZES causes high stomach acid. But the symptoms of that are surprisingly similar to those of low acid.
In either case, a gastroscopy is a good idea. ZES is caused by Type 2 gastric NETs (Neuroendocrine Tumours, aka Gastric Carcinomas). AMGA causes high levels of gastric which can, itself, cause Type 1 NETs. A gastroscopy (and a test for serum chromogranin A) should spot those if they're present.
Both types of NETs are fairly innocuous but it's a good idea to know if they're present. I have Type 1 NETs and I need a gastroscopy once a year, just to keep an eye on them.
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