High MMA: Hello I have just received... - Pernicious Anaemi...

Pernicious Anaemia Society

31,966 members23,105 posts

High MMA

Bean101 profile image
15 Replies

Hello

I have just received the results of my urine MMA results

Vitamin B12. MMA. Result 3.4. Range. 0-2.5 ug

Symptoms are pins and needles in my hands and feet, numb feet and tinnitus. I also have Hashimotos

I have been using B12 oils

I would appreciate any advice

Thank you

Written by
Bean101 profile image
Bean101
To view profiles and participate in discussions please or .
Read more about...
15 Replies
Dancer57 profile image
Dancer57

Hi.

I can't give you any advice what to do but I also had an MMA urine test privately and the result was high 3.14. Previous to that I did an Active B12 test which was 28.6 borderline deficient. Have you had an Active B12 or a total serum B12 test? The total serum B12 measures the B12 that is not used by the body as well as the active measurement as far as I know, someone else on here will explain that better than me!!!

If you have been taking a B12 supplement that may well affect the B12 result though.

I also have Hashimotos, my mum had Pernicious Anaemia. I have had tinnitus for over a year since a Hashi flare, I also had tingling in my legs which was due to deficiency in folate. I also get digestive issues and tiredness.

I requested my GP do a test for Pernicious Anaemia, she would only do one for Autoimmune Antibodies which does cover Intrinsic Factor and antibodies to Parietal Cells in the stomach.

As you have pins and needles etc I can't see why your GP wouldn't do the antibody test. Worth asking.

Anyway, you will no doubt receive replies from people with more knowledge on the subject than myself.

Good Luck.

Bean101 profile image
Bean101 in reply to Dancer57

I had an intrinsic factor antibody test done

Results 0-8. U/ml. <7

Serum B12. 404

Folate 8.8

Dancer57 profile image
Dancer57 in reply to Bean101

I see, my IF was 1 with similar reference range to yours.

I was positive for Parietal Cell auto antibodies and that's all they say, other than, as negative for IFab they would rule out PA. A standard reply really which satisfies the GP as no action required according to my GP surgery!!!

My total serum B12 was 444, few months before that it was 263 but I increased intake of B12 foods considerably which I probably shouldn't have done before the total serum B12 test as the result looks like everything is fine but at cellular level I appear deficient!!!

The NICE guidelines change at beginning of March, fingers crossed, so I am hoping I my situation will fit within these.

My Endocrinologist suggested I see a Gastroenterologist.

I would definitely speak with your GP. Cherylclaire reply is very informative.

Bean101 profile image
Bean101 in reply to Dancer57

Thank you

Cherylclaire profile image
CherylclaireForum Support

Methylmalonic acid (MMA) can be tested when a patient presents with B12 symptoms but has borderline/ in-range B12 serum test results. So used as a secondary test. MMA can build up in serum when there is insufficient B12 available to link up with.

Even if GPs are aware of this test, it is often difficult to obtain at primary care level, and expensive.

Ordinarily, B12 and MMA form a link -and then B12 gets transported to where it is needed: cells and tissues. If that link is not happening, B12 (even where introduced) cannot easily get transported and will build up in serum along with the MMA. This is known as functional B12 deficiency, and is quite rare. This would mean the patient would experience B12 deficiency symptoms while seemingly having sufficient or even high levels of B12 in the bloodstream.

I think there are likely to be other forms of functional B12 deficiency/ insufficiency, as there is potential for malfunction during transportation in other areas - B12 has a long journey to usefulness.

Since MMA can be raised for other reasons, elimination tests are required:

The first to rule out would be renal problems, which can be checked by blood test at primary care level.

The second is small intestine bacterial overgrowth (SIBO) which would necessitate a fasting breath test series monitored and charted over 3 or 4 hours. I should imagine also expensive. I was referred for this by a haematologist.

My GP said that above-range MMA is rare and she'd only seen that once before in her 20+ yr career. The Adult Inherited Metabolic Diseases consultant (later looking at DNA for a cause) was more familiar with seeing patients with much, much higher levels of MMA - but I would imagine that these patients were not then already getting frequent (if any) B12 injections. If a genetic cause can be found, they generally advise two B12 injections a week. My level (around 350-400 nmol/L , range: 0-120 nmol/L) was considered by them to be "raised" not "high". I think your level would translate as 340 nmol/L.

My MMA, despite being given frequent B12 injections, took three years and six tests to reduce down and ended up, on the sixth test, at mid-range. The Metabolics team could not find any cause in my DNA, and apologised. This certainly softened the blow. I guess they are aware that they really are the end of the line in terms of investigation. I'd been certain that something would be discovered.

My B12 symptoms can still be managed by two injections a week -but I self inject now.

Luckily we are all different.

My B12 was initially low -but only below range by 1 ng/L (196 ng/L, range: 197-771 ng/L). Enough to be treated with B12 injections. It was only when I continued to deteriorate, after treatment began, that my GP managed to get my MMA tested - refused twice, she found a major hospital laboratory able to test and confirm her diagnosis of functional B12 deficiency.

Although over the course of seven years I have had many tests, scans and consultant appointments, nothing else was found. A doctor who is a B12 deficiency expert is not necessary - just find one who is prepared to help you find your answers.

There is a difference between advised treatment for those with B12 deficiency and those with B12 deficiency presenting with neurological symptoms. NICE are to publish their guidelines in March, but worth reading the draft copy.

Make a list of your symptoms, or find a comprehensive list of B12 deficiency symptoms and highlight those relevant to you (Pernicious Anaemia Society or other B12 def, support group). Keep a chart or diary of symptoms: frequency and severity.

Do B12 oils help ? What is your B12 serum result ? Have you had folate, ferritin, vitamin D checked ? Any other autoimmune conditions in family ?

If you have an intrinsic factor antibody (IFab) test, please check that your GP is aware that, of those with pernicious anaemia (PA), only 40-60% get a positive result. Otherwise, an IFab test returned as negative may be used to "prove" you don't have PA. With a Hashimoto's diagnosis already, I wouldn't rule it out. Martyn Hooper, founder of the Pernicious Anaemia Society, had to have three tests before getting a positive result.

Bean101 profile image
Bean101 in reply to Cherylclaire

Intrinsic factor antibody level

0.8 u/ml < 7.0

B12. 404

Folate 8.8

I need to get Vitamin D and ferritin tested

I am only using a drop of the B12 oils so not enough.. I have increased it today

Many thanks

Cherylclaire profile image
CherylclaireForum Support in reply to Bean101

I have only seen IFab test results as "positive" or "negative".

Perhaps we need a science person like FlipperTD to have a look at this result ?

Your GP should eliminate any chance of renal problems, though, if MMA raised and not yet considered. A blood test necessary.

Bean101 profile image
Bean101 in reply to Cherylclaire

I’m having blood tests done next week

Cherylclaire profile image
CherylclaireForum Support in reply to Bean101

Glad to hear that. Make sure you get all you need.

bookish profile image
bookish

Hi, I found this from the PAS interesting. You have raised MMA, so hopefully will be able to get anti-intrinsic factor antibodies tested and a trial at least of B12 injections. I liked knowing that you can have 'normal' serum B12 and homocysteine and MMA and still have a deficiency which will respond to B12 treatment pernicious-anaemia-society....

Bean101 profile image
Bean101 in reply to bookish

I doubt my GP will give me a trial

EiCa profile image
EiCa in reply to Bean101

With raised MMA like yours, this is akin to medical negligence. It sounds like your GP is not B12 literate at all. My GI refused to treat me any longer until I started injections as he thought B12 would solve all my digestive problems. It didn't but he motivated me to get going on addressing the problem.

Bean101 profile image
Bean101 in reply to EiCa

My GP is useless

EiCa profile image
EiCa

Hello,

I have written about this before but I am in the US and have easy access to MMA and homocysteine tests. At the start of my B12 deficiency, my B12 serum level was 112. On another health forum I posted about this and a physician, who reads our forum as he learns so much from it (how about that?) contacted me privately and told me it sounded like I had B12 deficiency and to get my MMA and homocysteine checked. I did so. My MMA was 1.07 with the high end of the range being .4 so it was nearly 3 times higher than it should be. My homocysteine was 25 and the high end was 12. When reported to my GI, and also reading about it, I was alarmed that this could put me at a high risk of stroke/heart attack. Once I started injections (after trying the other routes...oral, transdermal) my MMA came down startlingly fast (with just a few injections) and in less than a year it was in the middle of the range. 2 1/2 years after 3 weekly injections my MMA is .1. My homocysteine responded well too. It is now 15 instead of 25 but there are other factors that affect homocysteine. I would guess you need to up your intake of B12 substantially and/or consider self-injectiion, although here in the US, most informed doctors take MMA quite seriously and would recommend injections immediately. Hope this helps.

Bean101 profile image
Bean101 in reply to EiCa

Thank you for your reply.. we have a few good facebook groups in the UK which will give me some advice about self injecting

You may also like...

High serum b12, high MMA and low transcobalamin

despite the elevated b12 result that this indicates a deficiency? My only potential symptom is...

High B12 whit high MMA whit no supplementation

0,56 So, I have high b12 whit high MMA without supplementing b12. So, whit these results, I starting

Markedly increased MMA

Hello, I posted a few days ago regarding waiting for my MMA results. I received it this morning....

Results MMA & Homocysteine

wonder if my symptoms may be more Thyroid related, but involving a B12 issue, appreciating these...

MMA homocysteine testing, Creon

well as I’m still have lots of original symptoms and have multiple deficiencies with pancreatic...