Can anyone help? MMA

[LWL24]

Hi,

I'm wondering if anyone can help?

A lot of background first....sorry!

I had private blood tests with Thriva in Feb, results were:

Total B12 305 pmol/L

Active B12 32 pmol/L

Ferritin 82ug/L

Vit D 39 nmol/L

I had these done because I have been feeling very tired, aching joints, tender muscles, occasional tingling back of thighs, fingers and toes, brittle hair that sheds quickly.

I was advised by thriva to contact my GP about the active B12.

She arranged FBC, Serum b12 and a Pernicious Aemia and antibody screen.

Results

Serum b12 188 (range 150-900) She said my results are normal.

PA and Antibody screen all negative.

FBC being monitored as MCH was 33.5 but GP said it's only just out, so not abnormal?

A Biochemist said my b12 is not normal, anything under 220 should have further testing. She suggested contacting my colorectal consultant to ask for an MMA test as she said GP probably won't do it (I spoke to GP about other results and she hasn't even heard of MMA test).

GP test said my B12 in range and gave me a leaflet about it and told me to buy it.

Finally my question, I had MMA test done just over 2 weeks ago. I keep calling consultant's secretary (bless her) and she says still not back it's still being processed. How long does it normally take and if it comes back high what do I do? Go back to GP? Will she even do anything? I have bought some sublingual b12 and a good quality multivitamin but I'm holding off taking them until results are back.

Thank you in advance

[Cherylclaire Forum Support]

My GP managed to get an MMA test done on third request - proved very difficult but not impossible. She was convinced that this would give her evidence for why my B12 injections (6 loading then every 3 months) weren't stopping my deterioration. It did: she diagnosed functional B12 deficiency, cofirmed by the lab because my MMA was raised.

She put me on two injections a week until no further improvement, then one injection a month. It took three years for my MMA to drop into range.

She knew that this test was needed because 10 years previously, she had had one patient with this condition. This is exemplary primary care.

I had a further 5 MMA tests during this time: the first four by haematology consultants, the final one by Adult Inherited Metabolic Diseases consultant who also looked at my DNA for reasons why this happened. None were found - for which they apologised ! Kindness really softens the blow of last-chance disappointment.

Your private bloods are giving you a healthy level of total B12 but with a low percentage of that being active B12, low vitamin D, and ferritin pretty much where it needs to be.

Your serum B12 from GP :

Is that in pmol/L or ng/L ? (1 pmol =1.355 ng/L)

If ng/L, then it's lower than mine was originally:

196 ng/L (local range starting at 197 ng/L)- that's about 145 pmol/L

Vitamin D - don't ignore a low test result. I have just managed to get my osteoporosis of the spine down to osteopenia level (better) with help from rheumatologist.

I remember that, having gone to the GP initially with lower back/ left hip pain, fatigue and daily diarrhoea, the first test I had was for cancer of the colon on a 2-week pathway. Not because the GP thought it was the answer, but because the computer was flagging it up as a possible cause.

You deserve better care than you are getting.

[LWL24 in reply to Cherylclaire]

Hi Cherylclaire ,

Thank you so much for your reply. Wow it sounds as if you have had a battle on your hands! Glad to hear that things have improved for you. So you don't have an answer for your low b12? This is all so new to me.

I thought my GP would take better care knowing that they missed my colorectal cancer for over a year. I had to push so hard before they did further testing. At least I have my colorectal consultant on my side!

The GP Serum b12 was 188 ng/L

I have been using a vitamin D spray since I got the results saying it was an insufficient level.

I checked again on the MMA test yesterday it's still being processed!

Thanks again for your reply

[Cherylclaire Forum Support in reply to LWL24]

Well at higher than that serum B12 level, my symptoms were bad enough for a computer to think I had bowel cancer ! Never felt too much like a battle as GP remained very proactive and supportive. Some of the consultants weren't quite so much. Nurses ranged from sympathetic to suspicious about my treatment. Glad I don't need to rely totally on them any more really. You can't always get the one who understands. Vitamin D can cause a lot of bone pain, aching joints etc too.

Was MMA urine or serum tested ?

Keep going.

I also have had negative Intrinsic factor antibody test results (twice I think) and negative gastric parietal test, negative ANA test.

[LWL24]

I'm glad that your GP was supportive Cherylclaire . I don't feel like mine is! I'm just lucky that the colorectal team were happy to request the tests even though they aren't ones that they would normally ask for.

I did wonder if it's the vitamin D insufficiency causing the achy joints. I think they do feel a bit better since taking the vitamin D. I have also read about magnesium oil to rub i to achy areas, have you tried it?

I'm on my feet all day at work walking up and down steps too which probably doesn't help.

MMA test was serum.

Are you still under a hospital specialist?

@