Colitis malabsorption--B12 deficiency--Neurological Symptoms

[Gabriel]

Thank you for the detailed answer. I think I'm 100% clear on this issue.
Yes, I meant Doctors Best Magnesium Glycinate, of course. (I was considering it at the same time with Thorne Methyl Guard Plus and I mixed up the two long names...)

[TM]

It’s hard to believe I joined this group over 8 years ago! It’s been a long, challenging journey which I couldn’t have undertaken without all the help and encouragement received here. And like many others who were guided to remission here, I haven’t posted anything in years. So I offer my sincere thanks—and apologies—to Tex and everyone who keeps this group going strong. And since everything I write tends to be way too long, I'll apologize in advance for the lengthy post.

I have a somewhat similar Functional B-12 deficiency story. But it involves pernicious anemia which I don’t think anyone has mentioned yet and which might affect others here. P/A despite its horrifying name basically refers to the presence of antibodies that attack the “Intrinsic Factor.” I/F is a protein produced by the stomach lining which binds to B-12 and is essential for B-12's subsequent absorption in the small intestine and its ability to be utilized by the body. This is an autoimmune condition, apart from any colitis malabsorption issues, and it seems that doctors fail to take it into account—even when all signs point in its direction.

By way of background: I’ve been diagnosed with MCAS and have one of each of the 2 main MTHFR variants, multiple DAO and HNMT gene variants, and a few other not so good SNP's. After extensive reading on this site (and Tex’s MC book) in 2/2017 I began supplementing with Thorne Methyl Guard Plus along with an additional 50 mg of P5P (B-6). I was already taking 800-1200 mg of Doctor’s Best Mag/glycinate, Vit. D3, and a few other supplements daily.

I’ve always had a very low RBC count and was “diagnosed” with borderline macrocytic anemia over 40 years ago. However, because my RBC’s were "oversized” fewer of them were still able to transport a “normal” amount of hemoglobin. Thus I was repeatedly told I wasn’t really anemic and should ignore decades of multiple out of range CBC results. In 12/17 after having taken Methyl Guard for about 8 months, (and stopping a month or so before the lab draw) my B-12 level was over 2,000 pg/mL and remained over 1000 pg/mL for another 9 months. Neuropathy and other neurological issues worsened and I was referred for EMG studies, physical therapy and to a neurologist and nephrologist.

I had Covid in 10/2022 after which, symptoms of seemingly everything I’d ever had, recurred, worsened considerably and morphed into “Long Covid.” In 10/2023 after rereading everything I could find on B-12, I ordered a B-12 test and a "B-12 binding capacity” test online from Quest. Bingo! They showed that binding capacity was low and that my B-12 level had finally dropped way, way down—almost 6 years after stopping Methyl Guard. The binding capacity test result helped convince my PCP to order a B-12 shot (in 11/2023) which resulted in almost immediate symptom improvement and increased my serum B-12 significantly. But by 2/2024--3 months after the shot—my B-12 level again dropped to low normal, symptoms worsened again and after much reading about P/A and related SNP’s I convinced my oncologist/hematologist to order an “Intrinsic Factor" antibody test” to rule out P/A. I’d kind of suspected pernicious anemia for some time, but never delved too deeply. I assumed I would have been advised if there was a possibility I had something “pernicious.” (Not so). The test result indicated elevated antibodies, and I was diagnosed with pernicious anemia and prescribed monthly B-12 shots which I’m still getting.

So as others have noted, with B-12 levels not everything is as it seems! Apparently either (or as in my case, both) low B-12 binding capacity and pernicious anemia can result in “Functional B-12 deficiency,” despite normal or elevated B-12 levels. For me, Methyl Guard was ineffective since my body was unable to utilize the unbound B-12. I seem to do much better now with the synthetic shots. I’ve since looked at a number of articles comparing methylcobalamin and cyanocobalamin and apparently they can be equally effective depending on the blood chemistry and SNP’s of the recipient.

One last observation. I took daily megadoses of D/B mag/glycinate for years (along with daily topical magnesium oil), but it didn’t prevent a continuing diagnosis of hypomagnesemia. About 2 years ago I had to switch since I could no longer swallow the huge Doctor’s Best Tabs. I’ve since been taking smaller (but more potent) mag/citrate veggie caps (without any digestive issues) and my Mg blood level has stayed about the same throughout, but still remains at the bottom of the reference range. Apparently I don’t absorb much of anything—my potassium chloride Rx dosage was tripled last year, and for years I’ve taken 1.5 grams of NaCl daily for hyponatremia, while also eating a high salt diet. It’s a great excuse to eat massive amounts of tortilla chips, but my sodium level is still always low! Amazingly my eGFR is always well above 60!

I don’t mean to imply that the Thorne and Doctor’s Best products aren’t highly effective for most—it’s just another reminder of how different we all are!

Thanks again to all of you!!

With best regards,
Teri M

PS—I just checked and the B-12 binding capacity test is no longer available from Quest.

[tex]

Teri,

Thanks for sharing your experience.

Tex