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]
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...?
Oh, I forgot - her main issue at the moment is high blood platelet levels and when I did a google for that and B12 I found a forum discussion on one guy who had normal serum levels but active B12 was problematic and that's how he found out the cause of his high platelet levels. I'm not sure the battle with NHS is going to be fruitful though hence why was going to suggest just getting first B12 injection done privately then self inject.
Hi Stevepurkiss. Sorry, little time but just wanted to say...IV B12 not a good idea for a person of advanced age...can put too much strain on the heart and cause congestive heart failure. And especially not if delivered by a clinic/spa!
Couple of thoughts re: mother - not safe to assumed functional B12 deficiency on evidence above (a possibility perhaps). Ask GP to check full thyroid function (cross-over symptoms) TSH, FT3, FT4 and antibodies TPO and Tg.
Also ask for MMA and homocysteine tests - in particular, raised MMA can be indicative of B12 deficiency (but can also be raised by other things).
Very high ferritin - ask for full iron panel to rule out iron overload. Hope not on iron currently.
Raised creatinine - good GP wants to re-check - kidney issues not likely caused by B12 deficiency (though kidneys issues can cause B12 deficency).
Kidneys issues are one of the medical conditions whereby B12 has to be used with caution - so not a good idea to self-inject B12. Please only use B12 under direct medical supervision until,or unless chronic kidney issues are ruled out.
So...afraid this is a tough position...suggest you persevere with GP to try and rule out other underlying causes for her symptoms or push for (at least) a therapeutic trail of B12 - under medical supervision (perhaps making use of the using the guidelines and evidence you used when pursuing your own treatment).
Good luck 👍
P.s. high platelets can be caused by kidney issues. More info on high platelets:
Thanks @foggyme, super advice as always! Am going round for a few days next week to prep her for the doc the next week - they don't even get to see them, they ring up sometime during the day.
Good to know about the kidney issue, I thought it might be result of b12 but sure, best to sort that out first. Her high b12 reading just seemed weird considering age and symptoms but guess I am only seeing my own illness in her!
Thanks again for your time and attention.
• in reply to
Oops realised I've still got two accounts, that was me.
more likely that kidney problem would cause raised B12 levels as they are would be less efficient at removing B12 so levels would build up - which could lead to a functional B12 deficiency - really would recommend going for the tests on kidney function that GP is suggesting. You could ask for MMA to be done at the same time but if there is both B12 functional deficiency and kidney problems going on then the results could be very difficult to interpret.
As others say - her thyroid is obviously not where it should be so needs to be followed up. Symptoms are very similar to those of B12 deficiency.
Thanks @Gambit62 - when I got my 23andme raw data I saw I had homo MTRR A66G (and hetero MTHFR C677T) which has issues with recycling B12, another reason I was surprised my mother's serum level was high but I guess that could be through the supplements. Got her to get a kit too but she's not done it yet, will be interesting to see what comes back in a couple of months so I know who to blame for what lol
The genetic variants you mention are ones that govern proteins used in the methylation cycle - so problems with recycling homocysteine etc rather than B12
MTHFR doesn't really involve B12 - more about B9 and being heterozygous with that particular variant has quite a low impact on B9
MTRR will affect the efficiency with the which B12 is converted to methyl B12 once it is inside the cell - so variants may mean that patients benefit from higher levels of B12 if the variants they have make the process less efficient. The main effect of the variant you mention seems to be around foetal development of the spinal chord
Still learning all this stuff, thanks for the links - yeah just looking at my StrateGene report & it's MTHFD1 & SLC that seem to cause me the probs, can't believe how badly I react to folinic acid & folic acid - my body was in complete pins & needles coverage so returned back to the methylfolate. Was pointed to Dr Myhill's work & might try the methyl at some point but all this powder & saline solution stuff is confusing, more research to be done but sounds like it might be worth trying, just ordered another lot of hydro, almost up to 280 injections since September now & seems silly going through 4 or 5 a day but it's either that or it's foggy brain!
If you've not seen one before here's my folate cycle diagram from the StrateGene report, it's pretty good! (the report, not my methylation lol!)
methylcobalamin may work for you but MTRR won't be about the type of B12 that is going in to your body as that isn't the B12 that goes into your cell - that will be the TC2 from your blood which then needs to be split from the TCN and combined with the methyl element in the cell and that is the bit of the process that (possibly) isn't running as efficently as it should.
Very interesting! Yes I had read a bit about TC2 & TCN previously & checked my Promethease report for TCN2 but seems 23andme hadn't found anything on that.
I'm busy gathering everything ready for my first neurologist appointment tomorrow so will mention - a couple of recommendations were to get a referral to a metabolic disease consultant and/or Guys & St. Thomas as they have an interest in functional B12 deficiency.
A bit of an ask but if yourself or anyone reading this has any other tips for what I need to ask the neurologist for do post and let me know!
I'm still just taking every day as it comes - haven't injected yet today or taken any supplements just to see how it goes, can't see the point in walking in there all perfect & also want to see how I am without injecting - brain foggy a bit already but know that's cos I'm doing lots at the moment, plus after a week of 4 injections daily I think my methylation is a lot better but even as I type this I have brain freezes lol!!
Her TSH is OVER RANGE so she is Hypothyroid. Please insist on having the antibodies tested - TPO & Tg to rule out Hashimotos - the most common thyroid condition throughout the world. In a healthy person the TSH is around 2 - 2.5.
Sadly the most important Thyroid test was not done - the FT3 - which would tell you if the reasonable FT4 result ( a storage hormone doing diddly squat ) is converting into the ACTIVE thyroid hormone T3. Needed in EVERY cell of the body and rarely tested in the NHS - what a scandal. The brain has the biggest demand for T3 - followed by the gut. This explains the gut issues your Mum is suffering if LOW in range - unless there are other factors like gluten ..
Apologies I have not clearly answered your B12 question - all I know is that when people are Hypothyroid they seem to need more B12 circulating - along with good levels of Folate - Ferritin and Vit D ...
I can't help feeling your instincts were right Steve - with your mother's misdiagnosed symptoms of Parkinson's, digestive problems, Thyroid issues, age, cardiovascular problems (B12 lowers homocysteine and helps prevent strokes).........
This article mentioning many of the B12 experts' opinions seems relevant to aging and relying on unreliable B12 tests :
.............
'As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’ says Dr Chandy.
‘Second, those with pernicious anaemia (known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’
Dr Chandy estimates pernicious anaemia could be behind 20 per cent of chronic disease worldwide. The range of symptoms caused by B12 deficiency is diverse with no set pattern — but tiredness and low mood are common.
In the elderly, it can cause dementia, says David Smith, Professor Emeritus of Pharmacology at Oxford University.
‘B12 deficiency is more common after the age of 60 and, once levels fall below 500 pg/ml (picograms per millilitre — the normal range being 500 to 1,000), the brain starts to deteriorate at twice the usual rate, making memory loss six times more likely,’ he says.
Pernicious anaemia is also linked to tinnitus (affecting seven out of ten sufferers), the skin conditions rosacea, vitiligo and psoriasis — it may even be linked to multiple sclerosis, thyroid disease, rheumatoid arthritis and psychosis, says Dr Chandy.
‘Unfortunately, too few doctors are aware of this or that treatment is cheap, easy and free of side-effects, with robust clinical evidence for its efficacy.’
Many people are not being diagnosed — and, when they are, they are failing to get the treatment they need, adds Professor Smith.
‘NHS guidelines insist B12 deficiency be identified by one of two possible blood tests — both of which are unreliable.
‘One test looks for macrocytic (enlarged) blood cells, which can be a sign of deficiency. The other measures the total amount of B12 in the blood. But you can be B12 deficient and sail through these tests.
‘GPs need to look for symptoms that suggest B12 deficiency — then see if these improve with B12 treatment.
'The definition of deficiency in the UK is below 200pg/ml — but harm to the brain can begin at anything below 500.’
Interesting! I just made another post wondering if mine are now more B9 related as my RBC count is down again. My mum is totally b12d for sure, poor thing, hope we can get it sorted soon - off up to hers for a few days this week to prep for her calls the weeks after with the doc (they don't even get to see them, first they call!). Just wish I could start her on injections, I hope I get to see her after a few, she would be so different, not the shadow of who she was, even though most her life has been plagued by illness and being shoved from one misdiagnosis to another!
Good luck with neurologist Steve. I feel for you all. I'm an oldie and am so glad I took matters into my own hands literally - self injecting for a year now and monitor my own thyroid with NDT. I don't take extra folic acid, as it's in other supplements anyway - try to ensure diet has plenty. I've found any stress or overdoing things generally causes tingling, anxiety, etc. to return.
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