I just put most of this in my profile for convenience, but thought I'd post to ask a couple questions. Short version of next two paragraphs: Feb-18 B12 non-detect (zero) and Folate high; Feb-18 started injections; Apr-19 symptoms just about gone; Jul-19 re-tested and B12 was high; 1-Aug-19 stopped injections and stopped moderate alcohol use; 7-Sep-19 retested normal B12 and Folate, IF negative. Go to Q's below.
I went to a doctor in February 2018 for neuropathy issues (finger tingling, leg pins/needles, and MS hug), severe fatigue, depression, and brain fog. The doc did some blood work and found that B12 was non-detect (<60), cells enlarged, folate was high, etc. They put me on the U.S. approach for B12 injections (1 per day for a week, one per week for a month, and one per month for life). I found the PAS in the first month and sourced my own B12 from the UK and began self-injecting with a dosage more in line with the UK strategy (once every other day until symptoms stop improving). My symptoms all went away in a little over a year except for the MS Hug, and a very slight finger numbness. SI once a week now.
I saw another doc in July 2019 and she suggested I retest B12 and Folate, go a month without injections and retest B12 and Folate and also get an IF test. She also suggested I stop drinking during the injection hiatus (couple bottles of red wine a week). The initial July 2019 bloodwork came back B12 through the roof and folate normal. Everything else they tested was good (cholesterol slightly high). I waited about 5 weeks and had the B12, Folate, and IF done. B12 came back much lower but still high normal, Folate was normal, and IF was negative (iffy when negative I know). In a quandry at the moment. Doc says I can stop injections and try pills. I'm skeptical.
My questions:
1) How long does it take for high B12 to dissipate from your system after injections stop? Probably varies by person, but mine was very high (>2000) at July test. It was about 700 at the Sep-19 retest and I'm concerned it's still descending.
2) I know that alcohol use can cause anemia, but can moderate drinking completely deplete your B12 and simulate PA?
My drinking has always been moderate and never an every day thing. My B12 was non-detect back in Feb 2018 (<60, about the lowest I've heard of here). The doc thinks that stopping drinking and popping B12 pills will do it.
I'm concerned that my symptoms will resume if I stop injections altogether. I still haven't injected since the first appointment (7 weeks ago). No noticeable symptoms yet. I'm tired somewhat, but I'm also 57. Weight workouts haven't showed anything. Mental alacrity is intact. No pins and needles.
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AirAl
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1,) Dropping from over 2000 to 700 after 5 weeks does seem like a big drop.
What is your diet like? Unless you're vegan an undetectable B12 is a strong indicator for an absorption problem. Unless you were taking lots of PPIs, or metformin, then it's extremely unlikely that the absorption problem is going to magically disappear. Can this doc explain why you had such an initially severe deficiency?
If it is an absorption problem (and I've be very surprised if it isn't) then you can swallow bucketloads of tablets and they will do nothing.
2) Stopping drinking, from such a small amount, isn't going to affect your B12 in any significant fashion.
I would follow one of two paths -
1) Restart the injections and carry on injecting for life. Highly unlikely to do any harm and it's been working so far.
2) Try the tablets, but watch out for a return of symptoms. Any sign that they're coming back - restart the injections for life.
Thanks very much fbirder. I am with YOU. I just needed some feedback. I found some articles on this via another post that indicated that B12 hangs around for a while depending on the type. I inject Methyl. If it stays around like Hydroxy seems to then my B12 is likely still descending. Since the B12 still there is holding off my symptoms, I'm thinking about not injecting for another couple weeks then testing again to confirm the decline. My diet is definitely high in B12 and always has been. Thanks so much for your input on the impact of alcohol. I though she was over-emphasizing that but I had some humility about it. She clearly isn't aware of the inconclusiveness of the IF test either, especially given the uber low B12 level. I don't have a problem firing doctors, so she either listens to me (and the mountain of knowledge out there) or she's gone. Thanks again, Al
The different types of B12 will be eliminated at different rates initially. Once they've been in the body for a week or so there will be no difference in the rate of elimination.
If you do hold off on the injections keep a careful eye on your symptoms. Keep a diary of them and rate each symptom with a score. Also, if you live with somebody ask them to keep an eye on you. Some symptoms are more obvious to others than to yourself (I'm often asked if I've missed a jab when I get grumpy - they're normally correct).
Hi, I would think you almost certainly need to have injections. I'm suprised the lab couldn't measure b12 levels at less than 60, mine b12 level on first testing was 58 and a friend of mine had a level of 52 and I have heard of people with lower levels than that.
I had every symptom on the list but have been slowly recovering since being diagnosed in January of this year. I have almost cut out all alcohol, although I only had a glass or two about twice a week, I do find it wipes me out, I think it depletes b12 so I'd rather not drink it, maybe a glass very occasionally.
I've also cut out all alcohol since last October when very poorly.
I've aksi read it can't deplete b12. I don't suppose whilst on injections s it will make much difference though with the high levels. I know I'm on the mend when I fancy a glass of wine....look forward to it.
I used to have 1 glass a day of red wine to unwind in the evenings. Got those tiny bottles so never tempted to have more lol ......oh well times change . I'm in bed so early now I don't have an evening yet.
So it was less than 84 ng/L (about 63 pmol/L). Different assays and different labs have different ranges, for what they consider normal and for what they can reliably determine. WIth mine the signal was too small to say what the level was, I'd guess that AirAl's was similar.
Now my results read as >2000 pmol/L because their assay can't measure anything above that.
a) IF test inconclusive - rate of false negatives is 40-60% depending on the exact test method so a negative definitely doesn't rule out PA
b) PA is only one possible absorption problem - there are a number of others - in theory if you have a curable cause then treatment would remove the need for injections. I say 'in theory' as the injections themselves can totally change the efficiency of transfer from blood to cells in significant numbers of patients - so probably best to continue with injections.
c) there is so much individual variation in how long excess B12 takes to be removed that high levels post injections - even 6 months and in some cases 12 months after loading shots are difficult to interpret unless they are showing levels falling below normal levels which definitely mean that you need injections more frequently - though this doesn't seem to be applicable in your case as your symptoms don't seem to have returned yet.
This applies whatever the type of B12 - studies give averages but show huge variation in all cases (though have to admit that I haven't come across a study specifically related to methyl).
d) if you are going to try oral it will need to be high dose oral (1000mcg +)and it would be best to start it immediately after a maintenance dose.
e) suggest you keep a diary of symptoms - including tiredness - and monitor how they change with time.
Sage advice from fbirder and Gambit62. Sadly, you will learn more from people like them than from most GPs and specialists. For some reason many medical professionals have a high level of caution regarding B12 injections. I have been spreading the word on B12 injections to my family and friends, providing supporting literature from PAS, and many have decided to try it for themselves. So far, everyone who has tried it has had favorable results. For many, they are finding relief from symptoms that have been increasing for many years. So sad that so many suffer from the lack of a single vitamin. Not saying that this is a cure all but with increasing age comes increasing incidence of gastric/absorption issues which often result in B12d. Also, there is a growing number of individuals suffering from autoimmune issues these days and rarely does one suffer from just one. This makes PA more likely among those with any other autoimmune issue.
Thanks so much for all the information and sound advice. This place is a godsend.
I think I will go a little longer to verify that the B12 is still on the decline. After one more test, I'll just go on with injections. If it hasn't declined much from 700, I'll consider delaying further. I don't want to mess around with those symptoms though. Seems like Russion roulette.
I posted the above because from all that I had read about B12d (Martyn's first book, countless posts here, studies, etc.), I didn't really think I'd be going off injections. These replies were good confirmation. I figure if my body isn't getting B12 from my B12 rich diet, it won't get it from oral B12 either. I did want to rule out alcohol as a root cause. Unless there is some kind of unique reaction that I have to alcohol that completely eliminated my ability to absorb B12, I don't think that my level of drinking would have gotten me as low as I got. From what I've read, alcohol impairs, rather than eliminates, B12 absorption in alcoholics. Not drinking for 5 weeks was easy. I've drunk a bit since the 2nd test, but I'll abstain until I get the follow-up B12 test. It doesn't sap me or overly inebriate me like it does some others in this community, but maybe I'll cut back in general. Alcohol doesn't do a human body much good.
I will definitely be monitoring my symptoms. It does seem like I've been a little more tired than usual the last week or so. Took my 3 mile "walk" pushing my mower yesterday though, so if anything it's subtle.
I agree with everything said in replies up to now so I’m just adding my comment as an extra point re alcohol consumption.
Pre diagnosis when my levels were low (I was 163 on diagnosis) I found that a glass of wine would make me feel ill for 2 or three days. I’d feel like I’d been on a massive bender (not something I did btw).
After 3 or more years of adequate treatment (mostly weekly si) I can now drink a couple of glasses of wine and feel ok the next day. I usually drink that once a week and very occasionally twice. However, I was on holiday for a week a couple of weeks ago and had 2 or 3 glasses each day and I’m still not quite back on form despite upping my injections to twice a week.
Bloating and slight nausea is back and I can’t shake off tiredness and extreme lethargy even though I’ve cut back activities and am resting plenty.
So for me alcohol is a big factor and if I was experimenting to test how I feel I’d be cutting it out altogether, as I did for a year or so at the start.
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