Hi everyone!
I started taking B12 recently when my DUTCH test revealed a slightly elevated level of MMA ( 2.4 when the normal range was 0 - 2.2).
I felt SO much better for taking it. The brain fog went away, I got my energy back and just generally felt like my normal self again. However, the chronic insomnia got MUCH worse (most supplements tend to set it off).
I took:
Nutribioticals Methylcobalamin 1000mcg - Felt fantastic in the day and couldn't sleep at all at night.
So changed to:
Cytoplan Hydroxocobalamin Sublingual 1mg - Had the same highs and lows but they weren't quite as intense.
So I'm looking for advice on how to take it. Is it just a case of start low and slow? Or is there anything I can take alongside it which might reduce the likelihood of it keeping me up at night? Is it worth me trying Adenosylcobalamin?
I don't understand half of the information on this forum, nor what methylation is, and I have no chance of figuring any of it out with this foggy brain, so if anyone could give me some advice in the most simple of terms, then that would be much appreciated!
I know this post is over a year old, but I thought I'd comment anyway. I haven't read through all of the other comments you've made on this site, so if I say something you already know, I apologize.
First, right off: you can take niacin to mitigate the caffeine-like effects of supplemental Vitamin B12. Just plain old niacin--not the no-flush niacin. Of course, this means you'll end up with an annoying flush sometimes, but it doesn't last long and it helps if you take it with food. I don't know why it works (something to do with the way all B vitamins work together) but I used to get bad insomnia every time I took my B12 shots, which these days is every two days. The niacin helped me a lot. I take 50 mg daily as a 120 pound woman.
I personally have a significant problem with Vitamin B12, and judging by the fact you have high MMA, you clearly do as well. But what's causing it is the question. The treatment will depend on that. I have a metabolism disorder, likely genetic. I'll explain that one in a moment because it seems to be something that many people don't understand, including most of my physicians.
Regarding treatment: for all causes of B12 deficiency, once your body is in a deficient state, you must take Vitamin B12 injections until it's rectified. The reason for this is that your body stores a small bit of B12 and then excretes the rest through urine and/or feces. So you must replenish your body's stores first and then take it until your methylmalonic acid levels are normalized and any accompanying macrocytosis (enlarged red blood cells) is gone.
The standard treatment is: 1ml IM or SQ injection every day for 7 days, then once per week for 5 - 7 weeks, then once per month. Depending on the cause, the monthly injections may be lifelong after the initial daily/weekly treatment. Sublingual supplements are not usually adequate, though I have seen very large doses of sublinguals (5000 mcg+) that may work. But you'd have to be regularly tested and it would only be to replace the monthly maintenance injections, and you'd have to take it every day. Only a fraction of oral and sublingual B12 makes it into your system.
Though there are several different types of B12 supplementation, don't buy the hype the methylcobalamin is the best. It depends on the cause. Hydroxycobalamin and cyanocobalamin are the standard.
The causes of B12 deficiencies, in order from most common to rare:
1. Simple lack of dietary intake. It doesn't have to be much, but your body has a maximum amount of B12 it can absorb at one time, so two or more servings of animal byproducts per day is best if you're not vegan. This is the easiest to treat and doesn't usually require permanent injections. Once B12 levels are adequate and MMA levels are normal, a small daily oral supplement can be taken if you're vegan.
2. Intestinal malabsorption. This can be caused by a number of factors, such as celiac disease or irritable bowel disease. The intestinal wall becomes damaged enough and stops or slows the absorption of B12. A more rare cause might be a parasite like giardia or pork/beef tapeworm. If the underlying cause of the malabsorption can't be controlled or cured, then a lifelong, monthly B12 injection is required.
3. Pernicious anemia. This is an autoimmune condition where the immune system attacks the Intrinsic Factor (IF). IF is what binds to the B12 in your stomach and carries it to the next stage of use. Your body will also produce limited amounts of it normally, which is why there's a max amount of B12 you can absorb at one time. So with PA your body suddenly has a lot less IF to bind with the B12 and you end up deficient, despite normal dietary intake. There are specific tests that can be used to diagnose PA in addition to serum B12, MMA and a CBC, which are: Anti-intrinsic factor antibody test and the parietal cell antibody test. They have varying degrees of sensitivity but can be useful. Pernicious anemia treatment requires lifelong monthly injections.
4. Metabolism disorder, also sometimes called "inborn error of cobalamin metabolism" which is genetic. Methylmalonic acidemia is another term that might be used. What this means is that there's a problem with the way your cells actually USE vitamin B12. So it's not an absorption or dietary issue like the other causes, there's actually a whole host of problems that can occur with the way your body uses it.
This means that the typical test for B12, the serum B12 test, is inadequate because it only checks for what's in the blood, not what's in the cells. So you can have a bunch of B12 floating around in your body and the serum test will analyze that and say "normal" or "high" but you're actually deficient. This is why the MMA and homocysteine tests are needed.
If you have a normal/high serum B12 and high MMA, this might be you- especially if you have a high MMA that seems to stick around, despite B12 treatment. I personally have a metabolism disorder, likely genetic. It took 20 years to figure it out because my Vitamin B12 serum tests usually looked normal. Most doctors don't even know to check MMA, so it's awesome that you apparently had a doctor who did. Methylcobalamin is ineffective in treating these conditions. The standard is hydroxycobalamin injections, or cyanocobalamin if the former can't be used. But more frequent injections are required than the typical monthly.
It was my neurologist that first brought it up. I had significant pain in my extremities and had no idea that it was peripheral neuropathy, until he diagnosed me. At this point I knew I had a problem with Vitamin B12 and was taking supplements, but no one knew the cause of it. I was initially taking monthly cyanocobalamin injections, but after a manufacturing plant closed and caused a shortage of injections, I took 5000 mcg of methylcobalamin sublinguals every day. BIG mistake. It was almost like taking nothing at all and my neuropathy exploded. This is when I sought out a neurologist. His assessment was "Judging by the fact you've had a B12 problem for a number of years and frequent bouts of macrocytic anemia, I think the cause is a vitamin B12 deficiency even though your tests say it's normal and I have no idea how to explain it." The man's a genius.
From then on I was able to do my own research and find some doctors who actually knew about these things, including the rare ability to meet with Dr. Ralph Green of UC Davis, who is one of the few world experts on cobalamin metabolism disorders (he doesn't usually meet with patients but it was facilitated through my hematologist at UC Irvine).
My hematologist ordered a cobalamin related disorders genetic panel from ARUP labs (I think Baylor University has a smaller panel) that looked at 28 different genes
https://ltd.aruplab.com/Tests/Pub/2011157?_ga=2.189074403.934340318.1633910875-1094602760.1633910875 My insurance covered this in its entirety, so maybe yours will do the same (if you're American). But you'll need a doctor (preferably a hematologist or geneticist) that can use ARUP labs, which largely serves university hospitals.
According to this panel, I have a deletion in the MTRR gene, though it's only one bad gene (instead of two) and they're unsure if it's causing my symptoms. But we're sure I have a metabolism disorder. To treat it we sort of experimented. Because my body has a tougher time getting B12 into cells, we decided it was best to basically to do a "standard treatment on steroids" with a 1ml SQ injection everyday for 30 days, the once every other day for 2 months, and now I take my maintenance dose every 2 days. My neuropathy, which was all the way up to my elbows and knees, is now just in my toes. And my anemia is gone.
I still struggle with severe fatigue, but it's much better. I don't know if the two are related, though after 20 years of Vitamin B12 deficiency, it's possible that there's some permanent damage.
Anyway, I know that's long. I hope it helps. Let me know if you have any questions.
