So it's been a while since I've visited these forums! I was diagnosed B12 deficient last July then when had SACD symptoms & NHS wouldn't treat me according to guidelines I started self-injecting in September. I also discovered Vit D deficiency, and in Jan I discovered I was taking too much B6 so stopped that which also stopped lots of neuro symptoms.
I've been self-injecting twice daily for a few months but kinda hit a plateau & as was getting anxiety & short temper I thought I'd try to see if it was the methylfolate I was taking so tried folinic acid then folic acid but whole body ended up covered with pins & needles, now I'm back on methylfolate they've calmed down a lot & now just my feet.
I also discovered the work of Dr Myhill and discovered functional B12 deficiency, and currently I'm injecting 3/4/5 times a day just to keep the symptoms at bay. My stomach is still fermenting lots so thinking trying the paleo/ketosis way might help as I just seem to be feeding the problem & not getting anywhere. I've my first neurologist appointment on Monday but would you believe it after having to write to the doc re my haematologist referral it came back rejected.
I got my mother to get herself tested as she has all the signs of B12d and has been misdiagnosed with various stuff including Parkinsons over the years. She's had breast cancer and a couple of strokes, however I understand they could be B12 issues.
The full blood count wasn't done I don't know why but got her results back and her B12 is quite high - 678pg/mL [197-771], but she has been having multivitamins with it and cereals. My father's was 250, I find 678 pretty high for someone who has slurred speech, memory issues, can't get warm when the heating's on full, suffers chronic fatigue and certain levels of paranoia (IMHO).
She said she was diagnosed with ulcerative colitis when she was younger, I see can cause B12 deficiency and if I've got functional B12 deficiency with obvious (well, obvious now) signs going back to birth and I see same issues I went through with her (and if I don't inject for a day!) then I'm pretty sure she's got it too.
A year ago they said she had iron anaemia & gave her iron infusions, she's also had iron supplements "when she needs them" - her ferritin is off the scale at 317ng/mL [13-150]!
They want to re-test her creatinine 92 umol/L [45-84] & GFR 52 mL/min - these both point to kidney issues - IMHO this could be a result of functional B12 deficiency as if that isn't fixed then it's going to have knock-on effects.
Her TSH is 4.3 miu/L [0.27-4.2] so just over the limit, and free T4 is 17.6 pmol/L [12-22]
Her folate seems OK at 17.7 ng/mL [3.9-26.8].
Calcium 2.29 mmol/L [2.2-2.6], phosphare 1.42 mmol/L [0.8-1.5], phosphatese 87 u/L [30-130], protein 69 g/L [60-80], albumin 48 g/L [35-50], globulin 21 g/L [17-35], calcium concentration 2.21 mmol/L [2.2-2.6].
D3 looks ok at 104 nmol/L, Haemoglobin A1c 5.7% [4-6.3] & IFCC standardised 39 mmol/L.
She was really ill this week with what someone said sounded like a flare-up of the Ulcerative Colitis & I'm going round next week to go through some of the stuff I've learned on my journey. As usual the doc said the B12 was fine, but if the cells aren't using it then no wonder she's so ill. I said it'd probably be a nightmare trying to get the docs to do anything and even if they did follow the alternate day injections that might not be enough when she starts so I suggested she gets a first B12 shot done privately then self-inject from there. She doesn't like the idea of injecting which neither did I but my auto-injector makes it a lot easier and what's the option? Just more decline.
So I searched for a place local to her for B12 shots and the first results is that of a clinic/spa who offer IV drips - are they a good idea or would that be too much to start with? Told her you can't inject too much of it, and at least if she does it she can feel what it's like and see if it does anything to help, which I personally believe it will.
I'm also considering trying methyl instead of hydro but it's a faff trying to figure out powder and saline & stuff!
So am I kidding myself thinking she also has functional B12 deficiency or have I hit the nail on the head...?