High methylmalonic acid-possible B12 deficiency?

So, I had a visit with the local Neuro Doc about a week ago. Got a call from his office telling me I needed to come in to get B12 IVs everyday for the next two weeks, then once every two weeks, and then every month until who knows when. I guess my methylmalonic acid was really high (740), high is anything over 330ish...

Has anyone else been diagnosed with this in addition to their sarc? What do I need to be aware of with this injections? Does it have to be an IV or can it be done in pill form? What exactly does B12 deficieny mean or cause? Will the B12 deficiency disappear once I get off Methotrexate (go from 7.5mg to 15 mg next week; just got down to 20mg prednisone from 60 over the last 4 months).

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Hello Two labs,

I recently went to see my Neuro with problems of ongoing pain and numbness that had been getting steadily worse over the past year. My Rheumatologist had hoped that it was caused by a simple vitamin B 12 deficiency. This was not to be. Apparently, Normal B12 levels are 180-900 and mine was 260. Lower normal range. The Neuro told me that to have the pain and numbness i was experiencing caused by a lack of B12, my level would have to be 50 or below. (Mine is apparently caused by either my sarc being out of control or another auto immune disease brewing in my liver-long story).

In answer to your question though, The Neuro told me that Methotrexate does not deplete Vitamin B12. (I take 15mg Metho weekly by injection). It can deplete Folate though, so be sure you are on a folic acid supplement and that the time you take it is at least 12 hrs before or after your dose of Metho!
I did, however, read that prednisone can decrease your vitamin B12 levels!

Vit B12 deficiency can cause numbness, but it can also cause severe fatigue, weight loss, constipation, soreness in the tongue, mental changes,depression,dementia, weakness and anemia(Pernicious).Vit B12 Can cause permenant nerve damage if untreated!!! (Folic acid can correct the type of anemia caused by the B12 deficiency but not correct the nerve damage!)

From what I have read, B12 deficiency can also cause the methylmalonic acid increase, so I imagine that this is why the doc is in such a hurry to get your B12 under control. Apparently this issue can cause some major Neurological problems.

Aside from injections, I believe you can also recieve Vit B12 sublingually (under the tongue).

Here is a website that i found that might give you some more info on B12.

http://ods.od.nih.gov/factsheets/vitaminb12.asp

Hope this helps!! Good Luck!

Be well!!

Dawn

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Dawn,
Did they also check your M acid levels? The M Acid levels can detect early B12 depletion. My B12 levels are in the lower normal range but the M acid was off the charts. They should check both.

Two Labs

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Hi Two Labs

They did not check my M acid levels. My primary care doc is somewhat lacking. My Rheumatologist is in Boston and she told me to have my Primary order the lab tests to check for B12 and Folate deficiency so that was exactly what he did! Nothing more. I don't think his mind works in that way! UGH!

I often wonder alot about my B12. I think it is only in the lower normal range because I do try to put alot of B12 into my body every day! my ex mother in law, who is still a good friend of mine had suggested to me once that B12 may be my problem and since then I have tried to drink at least a 32 oz bottle of Powerade daily. This one bottle contains 40% of your RDA of B12. I do know that prior to starting this, I was always so tired that I had to nap every day! I would almost fall asleep driving. If I skip a few days the numbness does get worse and I feel really cruddy. I hate powerade because it is sweet and I really do not need the extra calories, but it seems I need it for the B12. What can you do, right?
I am going to ask my PCP to run a serum M acid level when I see him again. I think to get an accurate level I will skip the Powerade for several days before I do this!

Thanks for the suggestion!

Be well!!!

Dawn

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High MMA could be a sign of B12 deficiency. Levels of B12 below 400 should always be evaluated if there are symptoms, and anything below 300 should send you to the gastroenterologist to test for intrinsic factor and parietal cell antibodies as you may be having malabsorption of B12. According to an article in American Family Physician, "use of a low serum vitamin B12 level as the sole means of diagnosis may miss up to one half of patients with actual tissue B12 deficiency."

If your B12 is low, you may also need shots until they evaluate your ability to absorb B12 orally. Sometimes even small things like taking H2 blockers can prevent B12 absorption as stomach acid is needed to absorb B12. Plus, folic acid deficiency can cause falsely low serum vitamin B12 levels; you see how complicated this can get--so best to have a GI doc take a look at you.
In the meantime, I would just take B12 in pill form and forget about the sugar drinks--if you take 1000 mg of a good quality supplement daily you will get a small amount of B12 that way, as it can still be absorbed in the ileum even if there is malabsorption going on. Don't take the supplements a few days before going for the blood tests though; orally taken B12 roaming around the blood will give a false high reading on your blood work and give a false impression that everything is ok when it is not.

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Hello Shrinkingviolet

Wow! That is crazy! When I went to see the neurologist with a serum B12 level of 260 he said it could not possibly be responsible for my problems such as extreme numbness to the point of pain unless it was as low as 50. He said this was caused by the fact that my red cell were out of whack and therefore it was a liver problem! all of my red cells, MCV, RDW, etc are all too high! He did not even want to try me on a shot of B12 when I asked him to. (My rheumatologist had thought that it was the B12 all along causing my issues!) UGH! So I went to my gastro for a liver biopsy that he had been putting off for the past year as it has been suspected that there is a secondary auto immune disease floating around in there with the sarc! He thought that the Neuro was nuts to blame the numbness issues on the liver, but also never mentioned anything about my B12 although I have seen this gastro for years;(he had previously treated my acid reflux, and has proven that I have IBS and that my colon is too large and I have too much small intestine but nothing I can do to fix it), he was readily able to recite my serum Albumin levels from the past several years, and does have full access to all of my lab reports! Anyhow, he ended up procrastinating my biopsy once again(after already having me strapped to the table with the IV and monitors!) and is now referring me to a liver specialist at the Lahey clinic where my Sarc doc and Neuro are! I am thinking that perhaps while I am at it maybe I should see another gastro while I am there as well! UGH! I am so tired of docs never actually coming up with solutions but rather passing the buck on to someone else! I wish that my Rheumatologist could do everything since she is the only one who really listens! She handles my Methotrexate and makes sure that my pain is in decent control and manages my joints and bones but that is about the best she can do other than offer suggestions and listen. It seems though that even when she has a hunch like the B12, it is not followed through and taken seriously by other docs, or else they just do not really want to deal with messy sarc! UGH!

Thanks for the advice on the B12 tabs. I am pretty tired of the sugary Powerade though it certainly did help with the fatigue and the extra sugar did not hurt except for calorie wise as i have low blood sugar to boot! (Ever feel like you were falling apart??? LOL!!!) I think I will do some more research, print it out, bring it to my primary and tell him what tests he needs to order! This is usually how it ends up going down! (Kind of sad that we have to end up being our own docs these days, huh? Where is our six figure salaries??? LOL! they should start sharing!) Then I will go to the store after the labs are done and get some of those B12 tabs you suggested.

In the mean time, be well!!!

Dawn

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Sorry to hear of all your problems with the doctors. It is a shame when everyone can't agree on treatment. I hope your docs get your liver evaluated--maybe they need to do a scan to see if there are any granulomas in the liver and that may be responsible for some of your wacky numbers. The rheumy should be helping you with this B12/folate issue if only because of the methotrexate. I would loose that neurologist and maybe the primary doc too--you need better coordination of care. The neurologist is just plain wrong about the B12; even the older textbooks say 200 is low; the newer ones are looking at 300 and even 400. In Japan, 500 is considered low and grounds for treatment. Print out these articles and wave them in front of that neurologist while you are getting copies of your medical records to take to the next, hopefully better neurologist:

http://www.aafp.org/afp/20030301/979.html

and

http://www.emedicine.com/neuro/topic336.htm

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My labs sent to my neurologist show I have a severe vitamin B 12 deficiency? I have the leg pain, numbness and have to use a cane to walk without falling. My only med is Plaquenil. I've been advised to get the B12 shot weekly. I hope that my ability to walk normally will return after these shots. I don't really know if my Sarc had anything to do with this. I was taking a multivitamin daily. All my B12 deficiency symptoms developed over the last 3 months.

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I currently give myself a prescription B12 shot (Cynaocobalamin) once a month -- it has made a major difference in my quality of life.

After numbness in my face, and tingling in hands and feet developed last year, I was referred to a neurologist by my GP (also known as the "leader of the pack"). After some reflex tests, my neurologist thought I might have MS or at best a B Vitamin deficiency. So I had blood tests, CTs, MRIs (1.5 hours in the tube) and an EMG ("stick & shock")-- I was found to be B12 deficient. They also found a lot of stuff I didn't know I had - a benign brain cyst and renewed scarring in my lungs -- leading to my sarc diagnosis.

Since it was believed that I didn't absorb B12 through my gut, my therapy started with a B12 shot once a week for 4 weeks straight and then once a month after that. My symptoms improved quickly. For the first 6 months, I noticed that I would have sometimes have mild neuro flare (in the week before my scheduled shot) that would be put down as soon as I got the B12 in my system. The B12 was great for my health; I threw off every cold and flu that came through my office.

I'm not on an anti-inflammatory and was not at the time of my diagnosis, and would not expect B12 to reduce inflammation, like azithioprine, methotrexate or prednisone. After a year of B12 therapy, I still have to manage fatigue and other symptoms of sarc, but I have more good & great days than bad. (An aside -- On my second visit to the ER (4 years ago), I was given IVs to "wash" the high acid level out of my system. After the treatment, which occurred during a period of time where I so sick it was difficult to get out of bed most days, I felt great-- at least for a few days.) Good Luck!

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