Extremely high MMA

[SomethngClvr]

I am looking for some advice to help me understand the urgency of my situation. My state is 45th in health care and my doctors can't even figure out what specialist to send me to. It's very complicated so I'll keep it short.

For 7 years my vitamin and major blood levels slowly decline without intervention.

4 years ago I had a rough year and ended up in a hospital numb and extremely weak from the neck down. It took 1 month to get on my feet again and 6 months of pt.

I believe my digestive system plays a role so I take alot of supplements and sublingual.

Just left the hospital after another loss of mobility.

My problem is I have high B12 serum +2000

I forced a Homocysteine and MMA test

High Homocysteine

MMA - 0 to 378 nmol/L range

Mine is 18,200 ....

Currently my new patient appointments are 7-8 months away. How dangerous is my situation over this time-line?

I am currently taking 2 intramuscular B12 shots per week. With the poly neuropathy improving steadily.

[Raven_Cat]

Hi, I am on here and doing some research today and came across this post you may find some related information which could prove on some way explanatory towards your issues. Read through the whole post and in particular a response from Cherylclair. I don't have an answer for you, good luck. healthunlocked.com/pasoc/po...

[Sleepybunny]

Hi,

Might be worth you looking into "functional B12 deficiency".

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops symptoms of B12 deficiency.

MMA, homocysteine and Active B12 tests may help to diagnose functional B12 deficiency.

Some links I post may have details that could be upsetting to read so you may want to have someone supportive read through it with you.

This thread may have some useful info.

Is there a link between functional B12 deficiency and functional B2 (riboflavin) deficiency?

healthunlocked.com/pasoc/po...

I'm not medically trained.

[mountmuir27]

Additional Labs: Serum Gastrin (to identify if you lack stomach acid aka achlorhydria), MTHFR (to identify if you cannot methylate B vitamins), Intrinsic Factor and Parietal Cell (positive points towards pernicious anemia especially with such high MMA/Hcy). Also get an ANA (checks for autoimmune component).

High serum B12 with symptoms can mean you lack "something" to activate it. Could be low stomach acid, lacking intrinsic factor/parietal cell, or folate. Do you have a family history, anyone with similar symptoms? If yes, that is your North Star and start plowing into research on their symptoms.

In the meantime, since an absorption issue seems to be at play, the best you can do is sublingual vitamins in high doses since only 1% gets into your system. Amazon carries sublingual options for all vitamins (Seeking Health is a good one). You want, at a minimum, methylfolate (not folic acid), riboflavin, B6, and B12.

Keep us posted. Even the #1 state has bad docs. You have to be your own advocate.

[SomethngClvr]

Thank you for everyone's replies and and time it truly appreciated. I apologize for not being specific as I could have. My immediate concern (partially due to first time it's been tested) is the MMA being 4 times above acceptable levels. The only neurologist I've spoken with said that's twice the highest he had heard of. Along with other complicated factors and uniqueness of this last episode, my Primary and even insurance not knowing what specialist even works with it is concerning. I have been referred to KU Medical center and for Endocrinology and they are confused aswell.My personal opinion is gastroenterology, but I'm way out of my league at this point. The internet isn't much help. With it implying I may be in trouble within 12-24 months, hence my concern with 8 month new patient wait.

I will definitely look into the the previously mentioned advise Thank You again.

[Hockey_player]

If you got the high B12 from when you were taking high dose sublingual B12 or injecting B12, then this is normal and you should not worry about it. If you had not taken any B12 for a few months it could indicate a problem. You could up the B12 injections to be more often. People are usually started with every other day until their symptoms are gone (for example, your neuropathy). You don't mention it but there are other symptoms that are common: digestive upset, brain fuzz, and fatigue for example. You will want those to clear up too.

[Hockey_player]

Here is some info about high MMA. medlineplus.gov/lab-tests/m... The high MMA likely is indicating you have pernicious anemia like the rest of us. In that case, you will need B12 for life.

[Hockey_player]

Here is another useful reference for you: my.clevelandclinic.org/heal...

[Hockey_player]

My experience as a scientist is that often when a number is that far out of range, it could just be that someone typed the value incorrectly. It might be worthwhile to do another test to see if you get a sky high value again. That said: the fact that your neuropathy is improving with B12 injections is a very likely sign that you have Pernicious anemia and will need injections for the rest of your life.