MMA and homocysteine

[CW12]

I have been going to a hematologist. I brought lots of information from the pernicious anemia society. I am an American and to my surprise and delight she was very interested and did her research .... she admitted to not being an expert. At my second appointment she was an expert and agreed I probably need to go back for loading shots I never had... HUGE BREAKTHROUGH!!!!!!! She said that before she starts loading shots she wants to wants to check my MMA and homocysteine that has never been checked. Original level 230. I have been getting injections since August (no loading) 1 August, 1 September, 2 October, 2 November , 1 so far December. My b12 level is 1200 and I still have weakness in arm and restless leg. I’m wonder if my level of b12-1200 will affect the MMA and homocysteine tests.

[fbirder]

Your B12 levels are high. If it is getting into the cells I would expect MMA and hCys to be low. Unless there’s another problem (like low folate, which would cause hCys to be raised).

[CW12 in reply to fbirder]

I am still having neurological issues. Just anticipating test results. Thank you

[CW12]

I know!!

[CW12]

The hemotologist said we just don’t see this in this area. I think they just don’t test for it. I’m sure there are many people with b12 deficiencies not being treated or given wrong diagnosis.

[Cherylclaire Forum Support]

MMA is supposed to return to a normal level shortly after injections have started, but like everything else about B12, this doesn't always happen for everyone.

B12, somewhere along it's journey, is supposed to link with MMA. If B12 is low, this Methylmalonic Acid hangs around in serum with nothing to do, which is why it is a reliable confirmatory test for B12 deficiency. Only renal problems and small intestine bacterial overgrowth (SIBO) need ruling out. (These bacteria steal your B12 among other vitamins. )

Once I'd had my loading injections, and was on a 3-monthly injection regime, things went rapidly downhill for me. It was then that my B12 and MMA were tested: B12 was above top of their measureable level at over 2000ng/L (as expected) and MMA was above top of the range (0-280 nmol/L) - at about 350 nmol/L (not usual).

In all, my MMA has been tested 5 times now - and always between 350-400 nmol/L. This level is considered "raised" and not "high". Consultants have told me that B12 deficient patients often have results several times higher than mine. My homocysteine level was "normal" . This has made them suspect that my MMA level may be normal for me, but Adult Inherited Metabolic Diseases consultant is looking at my DNA to make sure. My GP considers above-range MMA results to be rare, and stands by her diagnosis of "functional B12 deficiency" which was confirmed by the lab the first time it was tested (on her repeated request). Before me, she had diagnosed this functional problem in a B12 deficient patient only once, 10 years previously. She has been thorough and I trust her judgement.

Improvements for me have been gradual but continual. I still keep daily records of symptoms and their frequency, and photos of visible symptoms when they flare up from time to time. I have had to make changes to my lifestyle and self-inject more frequently than most. I have yet to see any discernible pattern emerging, but this is because I have yet to experience a symptom-free day. Getting closer to that goal, though.

I am totally unsurprised at a Haematologist's lack of understanding of B12 deficiency, only that you found one willing to admit that to you ! Here's one who is willing to work with you, and that is rare. I was told by 2 haematologists that B12 is "toxic, carcinogenic and highly addictive", which of course is absolute unsubstantiated alarmist rubbish.

I'm living proof of that.

As for you: well done for doing your homework and putting a convincing argument forward and well done to your haematologist for being honest about her shortcomings and for being willing to listen to you. You only know what you have been taught after all -and for that, you need an open mind.

For the reasons that fbirder has laid out, MMA should have dropped back to normal levels by now, and raised homocysteine levels can indicate other problems. If MMA tested, ensure liver and kidney function tests done as well (blood test) to rule out renal problems as a cause if raised . I hope you have had the following checked: Folate, ferritin, vitamin D. Along with a lot of others here, I have a struggle to keep these in line; although none are below "normal", they drop quickly without daily supplementing and osteoporosis of spine was discovered fairly early on . Don't supplement until checks are made and expert advice given - it may skew results. Ask for printouts - helps you to monitor your progress. Thyroid can also struggle with all this deficiency going on so also worth having checked.

Wishing you luck. You are going about this in exactly the right way and getting the appropriate tests. Do not get disheartened : remember we are all different, and that the success stories rarely get written about - people who use the forum tend to be those who need help, like you, at the beginning of their journey towards diagnosis and improving health.

[CW12 in reply to Cherylclaire]

Thank you. I never had loading doses so am trying to figure out if they will help or is there something wrong that I’m still having symptoms. You are write I am at the beginning of my journey and didn’t realize what a process it is.

[CW12 in reply to CW12]

*Right ☺️

[Cherylclaire Forum Support in reply to CW12]

We have been lucky - Heidiv 's post yesterday (below) has reminded me of just how wrong a whole raft of experts can be when they've just stopped noticing or listening. Disrespect has consequences.

[CW12]

It is a cancer hospital that I go to but I have a benign b12 deficiency. Just where the hematologist is housed. They had to look into treating neurological symptoms with now normal blood serum levels. Meaning loading doses. She agreed it was the right thing to do. She was humble and curious... and has been doing her homework.