B12 stores: I'm self injecting and... - Pernicious Anaemi...

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B12 stores

expatkerry
expatkerry

I'm self injecting and trying to establish what frequency will keep my symptoms at bay. After loading doses at the end of last year I managed to get my macrocytosis down, tinnitus stopped and breathlessness too. It all came back suddenly when I moved to twice weekly injections, then weekly. So I started loading again (daily this time) and for a longer period and I am currently at two to three times a week. My blood tests 10 days ago showed MCV back in the normal range, although red blood cells still slightly low and lymphocytes lower than before. My symptoms have abated again, this time even the fatigue has improved. What I don't understand is: I obviously have sky high stores of B12 in my body now why can't my body access it? In January just before I first managed to bring the macrocytosis under control my MMA was still slightly elevated at 0.40, but this figure doesn't correspond with results reported here by PA patients (usually in the hundreds) with functional deficiency. I know I have severe dysbiosis which I believe is at play here (gut bacteria also use up my B12 supply), would this count as another reason for functional deficiency? I'm just waiting on a new MMA test which might help me figure out whatis going on. If you have functional deficiency is the amount stored in the body irrelevant?

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PS, folates are high, homocystein normal, potassium, calcium and magnesium normal.

There are lots of us in the same boat, including me. I don't have a functional deficiency, MMA and hCys are low and B12 is off the chart. But I notice it if I don't inject twice a week.

Lots of people find they need to inject much more frequently than the recommended 8-weekly. Nobody knows why - yet.

There is some work going on looking into this. Last year there was an interim announcement saying that the researchers had found differences in the faecal samples of those needing more frequent jabs. pernicious-anaemia-society.... This is promising.

expatkerry
expatkerry in reply to fbirder

Thank you for replying, I'm aware of the study results and it seems to point to what I already know about my own microbiome which has been tested. Sorry you're in the same boat but at least it tells me it's not in my head!

fbirder
fbirder in reply to expatkerry

Those interim results are more likely to demonstrate a difference in metabolism, rather than a difference in the microbiome. They haven't released any details yet, but from their descriptions it sounds as if they're doing a metabolomics study.

You take samples (urine, faeces, blood, etc) from test and control subjects and you use something like HPLC-MS-MS or 2D-NMR to look at all of the chemicals in the samples (thousands of them) all at once. Then you use clever software do so something called Principal Component Analysis on the results. This look for particular hits that are present in the test group and absent in the control (or vice versa).

That is the first step. But you still have no idea just what those chemicals are. To do this you need to analyse individual samples to try and pin down their structures. Once you know that, then you can try and figure out what biochemical pathway(s) might produce more (or less) of that compound and how B12 might affect its production.

Then you might be able to figure out how to change things inside those people that need frequent jabs.

I'll be happy when doctors realise that such people exist.

expatkerry
expatkerry in reply to fbirder

Wow! I realise this is just supposition, but it could lead to treatment of some sort. Very encouraging!

kmsbc
kmsbc in reply to fbirder

I find this very interesting, if I'm understanding correctly that is! I'm just trying to figure out the right frequency of injections for me, once a month wasn't enough so trying every 2 wks. I seem to have a crazily fast metabolism, I need to eat frequently or feel ill and have never been able to put weight on. Do you think this is a common correlation with needing more frequent injections?

fbirder
fbirder in reply to kmsbc

Not for me. I struggle to keep weight off.

kmsbc
kmsbc in reply to fbirder

Ah ok, maybe not so simple then!

expatkerry
expatkerry in reply to kmsbc

I'm underweight but then I have severe digestive issues.

kmsbc
kmsbc in reply to expatkerry

I guess that's the problem in figuring it out, we've all got such different issues!

I’m on weekly cyano injections, folic acid 4.8 mg, a daily multivitamin vitamin to keep fairly stable.

I also fill in daily with D3, B1, B6 and TMG.

My Dr recently put me on a statin for high LDL cholesterol which I’m taking and monitoring symptoms.

I also fill in daily with 4x 5000 mcg methyl sublinguals that I split throughout the day and take extra ones for meetings to clear my head and allow both sides of my brain to function together.

What was your goal in reducing your injections?

expatkerry
expatkerry in reply to pvanderaa

I just didn't see the point in Injecting if I don't need to (and it is painful)!

I have to inject every other day or my neurological symptoms come back with a vegence. Sometimes even thats not enough & I need daily. I also spray using the better than b12 daily max dose. Seems nuts to me why I need so much of it. Ive been like this for nearly a year now & I dont think it will change. I do get indigestion when ever I eat so have to eat small meals. I think theres a link with that & having Vitiligo Universal.

"my MMA was still slightly elevated at 0.40, but this figure doesn't correspond with results reported here by PA patients (usually in the hundreds) with functional deficiency."

MMA in the hundreds means a different scale was used. Yours would be 400 on that scale. Elevated indeed.

expatkerry
expatkerry in reply to Hanneke12

No I think the scale was good, it's the one used in most European countries. The laboratory scale is maximum 0.40 for normal range, but the journal'blood' for haematologist questions this limit and suggests 0.27 is the norm in most studies

Hanneke12
Hanneke12 in reply to expatkerry

Yes: stichtingb12tekort.nl/weten..., using µmol/L

But, the same site mentions these values as well: stichtingb12tekort.nl/weten... - they are in nmol/L

expatkerry
expatkerry in reply to Hanneke12

Mine was the first one

After being guilted by my doctor into trying to reduce the frequency of injections I extended to once a month, first month ok second month crashing symptoms return. Tried once a week but then started running again and have found twice a week keeps me happy and able to lead a busy physical life, with an occasional third if I get fatigue, low mood/irritable.

I've been diagnosed for a year now and for the most of it felt like I would never get my life back, I'm not sure I'll ever be able to train as hard or run as far as I used to do but it's a joy being able to run at all and to be able to get out of bed in the morning!

Sound obvious, but because the symptoms are insidious I've learned that even if I'm feeling well it's best not to skip an injection.

I think the same frequency suits me as I seem to be doing OK on it, I'd just love to know why.

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