After my last visit to the haematologist I did email him and ask him to test my MMA and homocysteine levels. I didn't get a response until today and then I received this.
'A brief note to confirm that I did receive your e-mail of May 14 via the NVH. The MMA and homocysteine levels were not available on the samples we had from May 1, but I did manage to rescue what was left of it on which to measure the "active" B12 level, the result of which came through to me last night -it was comfortably normal. Even so, I hope you have managed to obtain/take the oral B12 as discussed -what effect this has on your well-being and the the total and active B12 levels we can establish at your planned return visit on June 29.'
I assume if this is correct I am not B12 deficient despite my serum levels being below range at 154ng?
Any advice welcome.
Thanks
Carly
Written by
Carlygeorge
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As I read it you have a B12 deficiency....... Your percentage of active vs inactive appears to be ok, but the total amount of both is too low. If you have symptoms I would certainly take the treatment. Are you having neurological symptoms ? If you are then injections are preferable to tablets........ You will also need to check your folate level as this works with the B12 to aid absorption.
Extreme fatigue, dizziness (feels like I'm drunk with no alcohol), and eyes black out when standing, I get breathless where I feel I have to breathe deeper to get oxygen, pins and needles in my feet and arms (usually at night or if I am reading a book, sitting with my legs crossed), constipation, tingling in lips occasionally, hair loss, this week my left shoulder has started twitching, I get wry neck often and require diazepam to relax muscles and severe headaches with lack of concentration.
I am told the pins and needles is positional and not a problem and that my levels are only just below range - I don't have levels for anything else. The haematologist originally told me he couldn't test for active b12. This is all I know he is reluctant for me to start injections as he doesn't believe it's causing my symptoms - no anaemia and no IF or PC. I pleaded with him to do these other tests
Ok, so you have neuro symptoms...... You need injections not tablets....... Also your folate is only just in range, it should be near the top of the range........ You can buy folic acid from any chemist, though that's the synthetic form which your body must convert before it can use it. You can buy Solgar Folate from some health food shops....... Start at 400 and work up to 1000. Eventually you'll need 5000 daily if injections are every other day. Folate is a water soluble vitamin so you can't overdose on it, any excess passed out in your pee.
I have documents to show you, but there doesn't seem to be a way to add photos / links. If you have Facebook, please send me a private message , and I'll send them to you ...... My name is Nicki Thorn...... Profile picture is a head shot with short brown hair.
sadly, we have discovered that very often, the haematologist has no more knowledge about B12D or PA than the average man/woman in the street, and sometimes dangerously less so!
It won't hurt for you to self inject every other day for several weeks and see if it makes a difference. If it does it doesn't matter what the gp says, and he/she may even take notice of it working if you are lucky. If it doesn't then all you have done is lose a few quid. You certainly can't harm yourself, its completely non toxic. But always remember that supplementing will always give a good serum reading, after all, you are flooding yourself with B12. But the official documents do say that this is likely and that follow up bloods are a waste of time. I also believe, although others here will know better than me, that your MMA and active b12 tests may have been skewed already by your supplementing orally.
Official recommendation is that Gp's take the clinical presentation rather than test results as their lead, but, bless their little cotton socks, if it ain't on a set chart, it can't possibly exist. That's what they're taught and that's what they treat by!
Thank you - I hadn't supplemented by that time but he originally told me he couldn't do the active b12 test - then following my email he was suddenly able to do it - this was a fortnight after he had taken the blood? And again I have no levels or reference ranges - just 'comfortably normal'
Sadly he told me to take those stupid tablets because he wants my level to rise and he can say see now problem so I have taken 9 days worth of cyanocobalamin 100 Mcg a day now @secondchance - am I right if I want the tests I now have to wait 4-6 months? Even though it's only a small amount I have taken?!
I've read that here but I think since you're only taking small oral doses then it shouldn't take that long. I think I read a paper somewhere about oral supplements being enough to raise the blood level but still result in raised mma. Will try to find it.
Can't see how he could do the Active B12 - St Thomas's who do the Active B12 (and I thought they were the only ones in the NHS who do it in UK?) say it should be processed within 16 hours (although I was told this was a conservative estimate when posting a sample - still, even if it was 24-48hrs that doesn't fit with his timescale?)
Well I am waiting for the written report and I have asked for all of the test results with ref ranges but he did mention that he thinks I should see a specialist in CFS - although does want me to take these tablets for 6 weeks to see if it makes a difference - although from me reading it appears it won't - other than raise my levels and that I should be having the injections. My levels are below range - I don't know what the problem is or why they don't think it's what is causing my symptoms
As far as I know CFS treatment consists of graded exercise and counselling. But it sounds from your symptoms and test result as if you have B12 def so that won't help you at all. It sounds like you need a second opinion or to persuade the doc to give you a trial of injections on the basis they are inexpensive and harmless?
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