Good morning everyone. I had my first B12 recheck last night in the ER. Took myself there last night because I've been having a lot of abdominal pain along the bottom of my abdomen and my right side under my ribs. They did some blood work and I asked them to check my B12.
Your Value
>1,500 pg/mL
Standard Range
139 - 931 pg/mL
I'm a little confused. I didn't expect it to be so high. They think the lower abdominal pain is my GI tract coming back to life after being deprived for so long and the ribs is my gallbladder. I go for a scan on that on Monday. So we shall see. But since my b12 levels are so high, do I not give myself my weekly injection tomorrow and especially before a ct scan?
Thank so much.
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EllaNore
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Also, I should say I have had 8 injections. The first three from my GP once a week. Then I bought my own from PAS and SI'd daily for 4 days but that is when the abdominal pain started so my GP asked me to cut back to one a week. The last test results were from the end of the week. I should inject again tomorrow, but feel I shouldn't with levels at >1500. ??? Thanks again.
May I ask which type of injection you've received? Is it Cyanocobalamin?
The general treatment for a deficiency, using Cyanocobalamin, is every day for 1 week. This gets your levels high enough to sustain for a while before getting a top up.
I think there are two questions in your post:
1) Why are you having abdominal pain?
The medics at the ER may be correct - it could be your system coming back to life. There is a theory called 'reversing out syndrome' which posits that supplementation makes symptoms come alive and reverse out in the order they first arrived.
2) Is your B12 level too high and should you stop injecting?
To follow through with reversing out syndrome, you have to keep taking the injections/supplements. This makes it pretty much pointless to test your levels again.
You cannot overdose on B12, it won't cause you harm to have extra. But it could be that it was alot in one go and now the system is having to sort out alot of damage in a short space of time.
Keep going with weeklies and ignore your test results. Mine have been >2000 for over a year to try to heal everything. It takes a long time.
Hello Pickle500, thank you for your reply. Yes, my doc started me on (CYANOCOBALAMIN) once a week fir 3 weeks and then went to one a month. But everyone was saying I could/should inject daily 0.03ml. So I bought the methylcobalaminfrom the UK and started my own injections. Maybe I jumped the gun. Maybe I was fedora for relief, maybe I should have let my doc do his thing. The insurance won't approve daily injections so I took matters into my own hands. Like I've always done with my health. Don't trust docs. Egotistical, narcissists for the most part. But I like my doc now.
There's absolutely no harm in taking more injections and doing the daily.
The consquences of it are that it wakes up dormant nerves and starts to bring everything back to life. And if there's alot of B12, that's a lot of fixing to do in a short space of time.
I would solider on through, keep doing the daily jabs (as many as you want) and just endure the pain for a while. It is hard to do, especially if there's heart issues or palpitations - I had those for months, with Raynauds purple hands. They seem to have gone away now, both the palps and the Raynauds. And that's taken a year of treatment to fix.
Sounds like you're doing all the right things. And I'm with you 100% re: view of Docs.
That's awesome! Thank you so much for the encouraging words. It's just all so new to me. I didn't know what to expect. I have a history of adhesions and I've had four abdominal surgeries to remove them. Because of a dog attack years ago, he ripped open my abdomen and well my life went downhill from there and it's led me to this 37 years later. So I have a lot of things to fix in my gut. So I think not only is it waking up my colon and everything else in my body but it's also waking up the adhesions. It is a lot of pain but now that I know what it is I can deal with it. I've dealt with much worse. I'm so glad your symptoms have improved. Everyone here mentions things I've never heard of before. Like the purple hands. I never heard that term. I wish you all the best with your journey. Who else is going to take care of us if we don't take care of ourselves!? Thank you so much.
Very interesting theory. I can see that happening. It definitely feels just like that. Thanks again.
"The medics at the ER may be correct - it could be your system coming back to life. There is a theory called 'reversing out syndrome' which posits that supplementation makes symptoms come alive and reverse out in the order they first arrived."
Really? I got the link from there. I thought. I joined and while going through the site i clicked a link. So i thought. Do you think I should not trust it? Now I'm worried.
EllaNore, I don't know who you got B12 from but it was not the PAS - they do not supply injectable B12 to anyone in the UK as this would be illegal. Supply for medical purposes without a prescription is illegal in the UK.
It comes in powder form so it is legal. (So they say) My doc prescribed me injectable saline to use and I put 10ml in the bottle and let it desolve.. im worried I'm being scammed. Where do you all get you b12 daily?
its a genuine product just not one that we'd necessarily recommend using because of the risks associated with combining it - though I guess that compounding pharmacies are probably doing exactly what you are doing.Personally I use high dose oral supplements most of the time but I obtain injectable B12 from an on-line German pharmacy - as it isn't prescription only in Germany.
Thank you. Glad it's legit. It seemed like it was to me too. I will try to find the German company. I can't absorb b12 so I can't take orally. everything its dosed out so can't really make a mistake mixing it. Thank you Gambit62
There is a secondary mechanism called passive absorption which is how high dose oral is supposed to work - average is about 1% of the oral dose - but that is an average and it doesn't seem to work for everyone and at the moment the only way of knowing if it will work is to try it.
If you have had injections you would expect your B12 to be be >2,000 so unless their lab has a lower cut off (which is actually what it seems) then "only" above 1,500 would seem low!
As soon as you have jabs you have to discount B12 testing because all it really shows is that your cells aren't taking it out of your blood as fast as you are putting it in - which we know anyway.
The jabs are safe and B12 is safe (no known upper limit) so don't worry about it.
Definitely do your jab tomorrow and ongoing ones. Repairing the damage caused by the deficiency takes months and years so keep on doing your jabs frequently until you aren't seeing additional benefits from them and only then consider spacing the frequency out by maybe a day or two. If you get symptoms again re-increase the frequency to keep your symptoms at bay and stick to that for life.
It sounds like you have an excellent team at your local hospital and I would trust them. It sounds like you may have an upper gastrointestinal tract digestion issue which could be causing the B12 - and possibly other vitamin and mineral - deficiencies.
Wow thank you so much for all of that information. I've had a lot of abdominal surgeries for 37 years I've suffered with unexplained abdominal pain. So I've just learned to live with it and ignore it. Knowing all this now and hearing what you are all telling me it's so validating. I feel like I'm on the road to finding the help I need with the doctors I have and having found this forum. Thank you all so much!!!
There is a helpline number that PAS members can ring.
A recent PAS newsletter Spring 2022, mentioned a new PAS support group starting in Chicago area. As far as I know this is the only PAS support group in US.
Wow, thank you so much Sleepybunny. I will check all that out. Thank you for taking the time to put all that info together. I'm learning so much. I don't know what to say. I've been alone with this for so long. 😊😊😊😊😊
Your symptoms were very similar to mine. Had virtual colonoscopy, CT abdomen and MRCP. All fine. Was tested for SIBO and positive. It may be worth getting that done too as well as a fecal elastase test which checks pancreatic function. SIBO, PA and exocrine pancreatic insufficiency are co-related.
Thank you so much, in fact doing a search for my symptoms, sibo came up. It's difficult because my doctors look at me and their eyes glaze over. if I start acting like I know too much or suggesting things to them they get very upset when you tell them how to do their job. So I'm trying to be very careful with this doctor and not overwhelm him too much because he's the best doctor I've had. He's the one who found my PA. When nobody else cared enough to even look past their egotistical nose. I go for a CT scan at 10 this morning to check my gallbladder. It's been pretty painful under my right ribs. I'll ask them about sibo and the other things. Thank you so much I'm so happy that I found this forum. You guys are validating everything I've been through so much. I'm so sorry we've all gone through what we're going through.
Thank you for all your replies - it makes our input worthwhile!
In the UK we mostly get our jabs already in liquid form in glass ampoules from Germany but I'm not sure how available they are to you in the US. Look up Wedgwood's posts and replies for all the latest details though - and there will be answers from some people in America who might help you better than us in the UK. I'll post you a link to her profile after this (I won't do it in this post as doing so often crashes my replies 🙄😃)!
Welcome to this forum - there are lots of super contributors here. I've been on here for about 8 years and lots were helping people well before I joined so it's good to have new people as part of our journey.
I have had a couple of lots of SIBO and I have idiopathic chronic pancreatitis, with resulting EPI, as well as having had B12 deficiency symptoms for about 3 decades now, so I've learnt a bit about the guts.
So know what you mean about Drs and their attitudes - you have a lot of sympathy on this! You definitely aren't alone!!
I see you are in the US so if you put that on your posts you will encourage people with more local knowledge to help you.
I hope your scan went OK this morning and it won't be too long before you get your results and therefore can make some progress with your health! 🤞
Thank you very much. 8 years here, that's great. I hope to be a long time member. I couldn't find much help in the US. I'm sorry you suffered so long. I hope everything is under some kind of manageable control. Abdominal issues are so hard to deal with. So much goes on in there. I appreciate you and everyone on here so much. Clearly you have all suffered emmensly. Glad to know things do get manageable.
Hi there — just so that you know you’re not alone, I’m in the US with PA and one of my stranger symptoms was a pain under my R ribs like the one you’re describing, though it only emerged soon after I started treatment for both PA and IDA. It would stick around for 3-5 days and then vanish, then return — it hurt constantly, but got sharper and more terrible when I sneezed or moved. My doctor ordered an ultrasound, but we didn’t find anything wrong with my gallbladder. Fortunately, after 8-10 months of once-monthly injections, it seems to have gone away for good? — and it’s such a relief! I hope yours goes away soon too. I’ll keep my fingers crossed for you!
Thank you so much for telling me this. That is exactly what it does. Is Ebbs and flows, some days are worse than others. It got worse when I went to daily injections and lessened when my doctor asked me to go back down to once a week. I'd like to go back to daily injections but I think I'm going to work my way up to it. My body seems to be pretty shocked at the moment. Lol. I sure hope that your symptoms are under control. It's nice to meet you. Thank your again. This makes me feel better.
Thank you for these links. I have come across some of this info too. I definitely have idiopathic neuropathy. About eight years ago I was rear-ended on my motorcycle when I was stopped at a crosswalk. Within a few days I was unable to walk or move. Nobody could figure out why I was in that kind of pain and 8 years later still nobody could figure out why I went from hiking the Sierra mountains with a 75 lb camera bag on my back, to crawling on my hands and knees just to go to the bathroom. Finally when I moved to Iowa I found the doctor that I have and he's the one who found the PA. Thank you again for all you're research and help. I will spend some time looking at all of this info. Have a wonderful day!!!
Thanks. I wonder why? Where can I get cyanocobalamin daily? My insurance doesn't cover it but once monthly. I'm in the US so we can't just get it. That's why I went with this.
You can get it from Canada OTC, by mail. I don't have the links handy right now but if you put up a new post asking for canadian cyano sources other US people will reply. Otherwise i'll check my emails and get back you but am a bit swamped at the moment.
Otherwise you can try hydroxo from Germany once the weather cools here in europe.
Back at my computer and was just about to go find those links when the wonderful Wedgewood just posted them on another thread. Scroll down to the 3rd post if the page doesn't automatically load up at wedgewood's post
Just a reminder that b12 can be affected by heat so if it's very hot where you are, you might want to wait until it's cooler. I think cyano can handle up to 30 C / 86 F, though personally I like to take a wide margin.
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Have a good day as well 
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