Over the past year I’ve found I’ve been needing increasing amounts of B12 injections in order to continue improvement in symptoms/avoid deterioration- from monthly, to EOD, daily and then twice daily.
But now I’m finding that even injecting 2 x 1mg hydroxocobalamin that my symptoms are worsening (memory, neuropathy, very cold hands). I have checked my ‘co-factors’ (folate, iron etc) and these are all at normal levels.
I feel the next step is to increase the injection frequency even higher but I am very concerned at this seeming need for ever higher doses which seems unsustainable. I would like to try methylcobalamin but it seems very hard to get hold of these days. Tablets/sublinguals don’t do anything for me. I’ve even tried not injecting at all (for a 10 day period) but my symptoms just worsened even more during this time.
Does anyone else inject more than 2mg per day? Does anyone have any ideas as to what is going on here? Would appreciate any and all suggestions, thanks!
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jeremycat_
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The symptoms of B12 deficiency overlap with a number of other conditions - including thyroid disorders and some other auto-immune conditions.
if you have PA then the chances of developing another auto-immune condition are very high.
I know you say that you have looked at other vitamins and minerals but have you looked at whether there is something else going on - eg thyroid conditions
Did you check vitamin B2 , people tend to forget that one and it is essential for making your vitamin B12 work. You might have a whole lot sloshing around your body not active. Also things can get worse before getting better as many of us know fine well. Read up on the methylation process and make sure to check you take all cofactors.
Try also joining Understanding B12 deficiency group. Lots of extra useful information there.
Please can I caveat my whole reply here with the comment that all the following notes are only my personal experiences to cope with an extreme situation and are definitely NOT recommendations. They should be read as such only and not taken as guidance.
My friend uses the same 1.5mg in 1ml, Pascoe brand, hydroxocobalamin ampoules as I do, but uses 2 a day to get 3mg daily. She's been on that level for 5+ years and is still improving.
I know you say you are fine for folate.... But I'm just saying... I use several 1000mcg Solgar methylfolate tablets as sublinguals alongside my hydroxocobalamin to give me the methyl group I need to make everything work, rather than using methylcobalamin. I used to be able to get some methyl from methylcobalamin sublinguals but not much and it was easier to use the higher strength hydroxocobalamin ampoules in conjunction with methylfolate.
It puts me off the scale for folate so in theory is possibly harmful but in practice it works for me - and shows I'm getting something that way. I'd rather live with a better quality of life now, than avoid any chance of doing damage but always suffer - however this may be a short sighted view that I regret in years to come!
Over the years my need for the methylfolate has reduced (although it's still above recommeed levels). Some of this is due to using Creon digestive enzymes (I have EPI = exocrine pancreatic insufficiency) and being very careful to eat plenty of green veg every day. You get nearly twice the intake of folate - as methylfolate - from food as you do from methylfolate tablets - and more still than from folic acid pills. I can't be sure that I'm getting better methyl intake that way but I know it works for me.
I very much like Sleepybunny's reply - as always - and want to add that after a while I found I needed high dose vitamin D3 (+K2), despite testing OK for it at some point. It seems to work to both reduce symptoms of D deficiency and makes my B12 work better. Thankfully thyroid doesn't seem to be a problem for me, but is well worth checking.
I also needed a lot more potassium, magnesium and iron than I should but I am able to get those from my diet better, now that I use the Creon, and I know you say you are OK for these anyway. Have you had your guts checked? Is there a reason you aren't absorbing or metabolising things properly?
Several people now have reported improvements with additional B1 Thiamine - and other B vitamins too. It's definitely worth considering.
It's also worth seeing if vitamin E and selenium (they work together) might help. It's unusual but shouldn't be ignored.
I found the best thing in the end for me was to take multiples of a basic A-Z multivitamin and minerals supplement to give me additional B vitamins and everything else. Once I did that I've had more of a sense of "cracked it"! But things change so it's always a work in progress!
Good luck with finding out what works for you and well done in continuing your quest to find the answers.
Denise, may I ask, did it take a long time for your diagnosis of EPI ? I ask because i have a number of symptoms that appear to suggest this, but when I was under gastroenterology, around 6 to 7 years ago, they didnt even touch on this as a possible cause for my inability to maintain my weight. I am currently just about 43 kg, and fat appears to hurtle through my GI tract. Would value your experience.
Sounds like that could easily be your problem, doesn't it.
My GP recognised he didn't have the relevant knowledge to help me but said he'd refer me to anyone I wanted to see. It took me at least a couple of years of research to find a good consultant but I was lucky enough to find an excellent team at Addenbrooke's which is less than a couple of hours from me.
They picked up an issue on an initial ultrasound scan and then sent me for an MRI and an MRCP. This was the start of 2020 so it got a bit muddled up with covid but only took a few months.
Denise, thank you so much for your detailed replies. They convince me I need to bite the bullet at some point and maybe pay out for a referral to a private gastroenterologist, though I think it will be big money.
I currently take an over the counter digestive enzyme, (from Time Health Supplements) and because there is a noticeable decline when I stop, it further points to this being a potential issue.
I recently read an excellent book called Primal Pancreas, which also appeared to describe my situation.
GP situation here in Hampshire is far from good, like many areas, and when I had severe pain, I was prescribed peppermint oil capsules and Omeprazole, neither of which helped the steatorrhea, and I did not continue the omeprazole because of the issues with malabsorption I obviously have. When I was initially diagnosed with malabsorption, my ferritin and b12 were very low, and my folate had no negligible reading.
If I think of any potential questions I will get back to you, but the symptoms you describe are mine to a T.
Sincere thanks again, you have been very helpful to me.
Do you think you might be able to look up a gastroenterologist (I did various Internet searches) and ask for a specific referral - you are entitled to a second opinion. As far as I know you are entitled to this - it's just whether you can get it or not!
Are you on Facebook? There's a Chronic Pancreatitis UK group which is somewhat helpful and there's a Pancreatitis Support forum here on HealthUnlocked too. I've joined a couple really helpful Webinars via this over the past couple of years.
Peppermint oil capsules? Do me a favour! My pancreas would grumble badly if I took them without Creon to deal with the oil.
Sounds to me that they aren't taking you seriously at all.
When my dispensary messed me about over my Creon earlier this year and I was losing weight and in dreadful pain, after I'd tried all the correct channels (including getting a letter written to them by my senior consultant, etc) to no avail, I got to the point of suggesting that I leave stool samples with them to show them the effects of not having the enzymes... They did finally back down and I've been doing well since!
Why does it have to come to this?
My Drs are pretty good, if you can ever get through to one, it's just the practice management and dispensary that is so dire that they've been put into "special measures".
Deniseinmilden, what led you to test for EPI? Did any symptoms lead to the idea to test for EPI or was it just b12 deficiency?
Have you had any insulin resistance?
Have you had your gallbladder taken out?
Did you ever test low for folate? I have not this I haven’t dosed any folate. But maybe I will start and then can start working on getting it from greens.
I am trying to increase my exercise but it depleated my b12, so just two days ago I ordered the 2mg doses from Germany. I am in the US.. but I wonder if I should be taking more folate.
I do high dose b1 and take a b complex w/o b6 so I don’t overdose.
Initially I just knew my guts weren't absorbing any nutrients when I started my quest for a gastroenterologist.
By the time I got to see one I was struggling with a bit of weight loss, stomach pains and steatorrhea.
So far I'm testing OK for insulin but if I have a pancreatitis flare then I get diabetes type symptoms but I haven't tested then specifically.
My gallbladder is still in residence and working OK so far! 😀🤞
Yes, I was low on folate about 7 years ago, when I first started my B12 jabs. I have needed supplements ever since.
If you increase your B12 injections you may well need to increase your folate but you might be getting enough with your other supplements and diet. It's worth checking it.
Make sure you are getting enough B6 - the recommended upper intake limit is 100mg per day and most supplements only contain 2% of this. You do essentially need it, despite the scare stories about it. It is vital for energy release.
I hope everything comes together for you.
Just one quick query - I haven't ever seen 2mg B12 ampoules.... Are you sure they are 2mg (in 1ml of liquid ) or are they just 1mg of hydroxocobalamin in 2ml of carrier liquid, ie just larger volume ampoules - I know they do these and they aren't so good for injecting as you are injecting a bigger volume of liquid for only the same amount of hydroxocobalamin as you would get in a 1mg in 1ml ampoule.
If they actually are 2mg in 1ml ones, please would you share what brand and supplier they are, please, as they will be useful to people who have to normally do 2 injections a day
they are 3mg in 2ml. however, what I learned from my friend that is an Emergency Room doc (terms in US), he stated that it would be better to break the doses up throughout the day as b12 is water soluable and I will just pee it out if I inject all at once. But if we are doing IM, then I would think it absorbs slower and thus wouldn't pee out. However, on the flip side, it may all enter the system at once eventually and thus making him right. He's one crazy smart dude. no doc has ever suggested this to me, but him. That being said, maybe that's why I need a higher dose because I do it all at once. I just was concerned about injecting with an inch needle so frequently. It makes me think I would end up mutilating myself. I only inject into two diff sites. But, I guess I can inject twice daily.
I want to go up to 3 mg/day. So I will play around with these two variations: 1.5ml twice daily injections that equivalent to a total of 3mg. then switch to the 2ml/3mg injection once daily. I'll try each for a month at a time and see if I feel a difference. How's that for trial and error.
Maybe I need more b12 because I don't do folate or b6. (mainly folate). We shall see. But I have also kicked up the exercise. I backed off until I can start doing the 3mg per day.
I LOVE this discussion. You seem like a smart individual like many others here that advocate for yourself and seeks out answers. I'm just a little behind in the journey. I don't have pain or oily stools, but I do have an absorbtion problem AND have had insulin resistance all my life and wonder are the two related. So I keep searching for things that I can rule out. Things I'm not doing that I can. I will start taking the b6 and add a little folate. I'll do it separately so I can easily back off if needed. These may help me absorb the b12 and b1 better.
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