I just had a follow-up with my GP (the unicorn one) - she’s been gobsmacked at my progress on the more regular B12.
Interestingly, my most recent blood tests for the neurologist included B12/folate levels (which I wasn’t fussed about as I’m self-managing the B12 at home). I had done an injection the night before and thought my levels would be up over 2000 but they were “only” 1470 pmol/l. Does that mean anything?
The neurologist asked her to get me to start tapering down from EOD - she agreed with me when I said I was happy to taper if it was done very slowly.
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Might be useful to keep one especially if you start to taper your injections.
If people space injections out and symptoms reappear or new symptoms start it might mean they need to have injections closer together.
"The neurologist asked her to get me to start tapering down from EOD"
If you're still making good progress on EOD injections, why does the neurologist want you to taper down?
UK guidance from NICE - National Institute for Health and Care Excellence, suggests that EOD B12 injections should continue for as long as symptoms improve in people with neuro symptoms.
Some doctors including some specialists have a limited understanding of B12 deficiency.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
Thanks Sleepybunny, I have not found many Medicals who know much about B12 here in Australia.
Both the neuro and GP think I have enough “stored” now so can begin tapering.
I responded really badly when the doctor moved me from weekly loading doses to monthly, which prompted my move to self-injecting. I have been keeping a symptom diary for months and while on the EOD my symptoms are pretty much non-existent. I have the occasional bad day but that’s all.
The only reason I’m considering tapering is because the literature says “ EOD until no further improvement “ for neurological symptoms. Mine seem to have all cleared up quite well.
I was left untreated for years and by the time I had worked out what was wrong with me and how to get B12 treatment, I was in a bad way with many neuro symptoms including pins and needles in my spine and dementia symptoms.
I improved for 8 years running after B12 treatment started.
The pace of improvement slowed as years went on.
What I'm trying to say is that there may still be more improvement ahead.
"Mine seem to have all cleared up quite well."
There are many neuro symptoms associated with B12 deficiency including neuro-psychiatric symptoms.
Might be worth checking if you have any neuro symptoms listed in these links.
At one point I had over 50 different symptoms....I suspect GPs thought I was making some of them up ......
"Both the neuro and GP think I have enough “stored” now so can begin tapering."
B12 is absorbed into blood from terminal ileum.
Stored B12 is released from liver in bile into the ileum.
My understanding is that if there's a problem preventing absorption of B12 from terminal ileum then even if you have lots of B12 stored in liver it won't get into the blood.
Do you have any issues that could affect absorption from terminal ileum eg previous surgery in this region, Crohn's disease etc?
I’ve never had any surgeries, gut or otherwise. I’ve got an upcoming scope (endoscopy and colonoscopy) that will hopefully help narrow things down. I’ve had a fussy tummy for years, especially after a bout of Giardia/campylobactor that took almost a year to feel better. But even before that, I struggled with low iron and have had a few infusions.
I did have lots of neuro symptoms but honestly, everything at the moment is really well managed (I should say managed rather than my symptoms are gone). My eyes are better, no brain fog, no dizziness or breathlessness, no tingling anywhere, most importantly no anxiety or paranoia. Concentration, memory and auditory processing are back to normal.
The exhaustion is the only one that comes back if I push past what is currently my limit.
I wonder if maybe my deficiency wasn’t going on for too long? I don’t know 🤷🏻♀️
The problem with diary-keeping is persuading a GP to read it. I had been keeping a diary for nearly two years and took it with me to a new practice. First time it was just pushed back at me with 'don't want that, we do our own tests'. Second time was 'we only go by what's on the computer' (huge errors on computer notes, but no-one cares about them either), and third time 'I can't read that, I'm too busy, got other patients.
It's so great to hear that you are feeling so much better! Well done!
Your serum B12 is completely irrelevant, but if you can have another look at the actual readouts from the labs you will probably find one is >1470 and the other is >2000. It is the limit of their equipment's ability to measure.
Even if you have some B12 'stored' you cannot utilise it without intrinsic factor. What is relevant is how you feel, and how you feel when you start reducing your injection frequency. Don't let them push you into becoming unwell again. I tried stretching out my intervals and very quickly realised it was too soon...... listen to your body . Good luck🤗
I did have the IFAB test and returned a negative result but I’ve had years of low iron and gastrointestinal problems so I really won’t be surprised if my scopes next month say there’s PA.
just thinking out loud, the injections bypass the intrinsic factor/stomach issue which means that the absorption point at the terminal ileum and whole recycling through the liver etc doesn’t happen. So our “stored” B12 is pretty useless and our body will only use a portion of an injection as well, right? (That’s why we don’t measure once on supplements). So flooding the system with injected B12 is actually quite helpful?
I suspect 'stored B12' isn't a real thing (refer to PAS "Help Sheet for Patient/GP Discussion"), but some B12 is excreted by the liver in bile. I think our poor bodies deserve a little flooding after a long drought! Enjoy your wellness, and long may it last!
I have to say as well, it’s so lovely being in this group. So supportive and informative!
I attended a PA zoom meeting on the weekend and shared how much I was improving and some of my successes, and one lady very rudely and condescendingly said “oh well, it’s early days dear. You’ll go downhill again soon.”
She’s lucky my mental health has been ok lately! I was so shocked. Even if ups and frequent downs are common, we can encourage better than that surely!
Sorry that someone has predicted your imminent downfall !! No, not helpful at all, and if there is one thing that can quickly be seen here from the daily posts and replies, it's that we can all be different, find we have different symptoms and treatment needs- and yet still be supportive of each other's efforts.
For me, "the usual" did nothing to help or stop my deterioration. The GP looked a little deeper and started me on 2 injections a week. So delighted with the results, she kept this frequency going for six months. Later, my "maintenance dose" - one injection a month - was not sufficient to maintain the gains. I started self-injecting every other day, then reduced it to 2 a week again. This can usually control my remaining symptoms.
Nothing has gone completely - if I forget to inject, it becomes noticeable very soon ! I no longer even try to reduce this frequency as I now know this does not work well for me.
I do not have a PA diagnosis. I have been diagnosed with functional B12 deficiency: B12 is not efficiently and effectively transported to the cells and tissues that need it. Not without help !
You will find a level that works for you in both maintaining your gains and controlling your symptoms by pre-empting their return. Injections should not be spaced so far apart that cyclical deficiency occurs. That is not maintenance.
Thank you, it’s so helpful to hear wisdom from others who are going through this as well.
My only remaining symptom on EOD is the exhaustion that returns very quickly if I push myself. I haven’t returned to exercise yet, beyond charging around my school getting to different classes. I’m managing daily life okay but I would love to get back into sport and fitness. I hiked 14km in February before my big crash and finally managed a respectable 1km a fortnight ago. It felt so good.
My doctor has been good about listening to me and she didn’t freak out when she found out I was doing EOD instead of the weekly we had agreed to. She does want me to titrate down but I said I would only do it very slowly and only to the point where I felt symptoms were still well controlled. She still doesn’t know why I have needed more B12 than any other person she’s taken care of (to be fair, I wonder how many have just quietly self-managed their B12 without telling her).
I think that if, you still have the fatigue, it might be better not to taper? However the exhaustion could just be from being out of shape because it is so hard to exercise when you don't have enough B12. I'm 63 (female) and play ice hockey several times per week with the guys and have lots of energy now that I have enough B12. I get injections once per week since my symptoms come back in about 3 weeks. So there is hope for a complete recovery for you!
My GP told me that the one other patient she had who also had functional B12 deficiency had been coping very well with 3-monthly injections for the last 10 years. I asked her how she would know, since it's possible that she also needed more frequent injections - but just did not choose to tell her. Gave her something to mull over.
It is not an easy decision to tell your GP about frequency of injecting - but how else do they know what they are observing ? Any improvements/results need to be accredited to get a true picture. It had not occurred to my GP that a patient might find it hard to tell her.
Much later, my Oral Medicine consultant, concerned about my "sky-high" B12 result, wrote of this in his report to my surgery, asking whether a GP could monitor my condition closely while I reduced my self injecting frequency. Something I had, with reservations, agreed to - as long as it was monitored by my usual GP. There was no response to that request as far as I'm aware.
Years after that, having spoken to expert colleagues, he completely reversed his opinion: he told me that he'd been wrong to be worried, that my body needed that level of B12, and tablets would not work for me. This was said in front of a small group of his students; good to see that he was passing on this new-found information.
Shame I didn't get that in writing ! I did write to him, asking him about this - and sent a copy to my GP surgery, so at least they are aware. No response from either; busy people with more on their plate. Just glad to have that on record.
This does not mean that you can't reduce your injections and still manage to keep your symptoms remain under control. Until more is understood and uniformity of treatment found to be ineffective, all of this is a personal experiment. Glad you have a supportive professional to witness the results. It is vital that this is monitored by someone that you trust - continuity of care is hard to obtain in the NHS now. Keep records yourself, if you are not already doing so. A daily symptoms diary/ chart. Change can sometimes be subtle, and useful to see direction of travel. Alongside symptoms, what happens to folate, ferritin, vitamin D and thyroid need watching.
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Help B12 levels after loading dose and follow up treatment
Ferritin up and b12 up - translation of blood tests, please?
Follow up - loading doses done but now being told it's dietary? 
Follow up re husbands B12 level 229
Follow up from my GP appointment 
