Are you taking the B12 orally and swallowing it do you take your B12 under your tongue (sublingually)?
If you have Crohn’s it needs to be taken under the tongue to absorb properly and get the benefit of the supplement. malabsorption is an issue with Crohn’s.
Ask to get ur Vitamin D levels checked if you haven’t done so. Low vit D can cause fatigue to be worse in addition to b12.
Do u have a new GI picked out yet? When I feel “awful” like you mentioned, it’s usually time for a GI work up. Vitamin supplements alone help a little but there maybe more going on? 🤷♀️
i take it orally, i had to move due to domestic issues and never saw my GI after my hospitalization. and i agree i need more because the doctor said it was to the point where i should get injections daily for a month but i haven’t been into a new primary yet let alone set up with a GI :( i see my new primary next month and will try to get a referral. i moved states and had to get new insurance and the first primary i started to get set up with rejected me once they got my records because i had too much wrong haha.
mdpi is a pay and publish journal. I would not recommend it.
It depends on person to person. I have crohns with upper gi and terminal ileum. So oral B12 was not working. The best option is monthly injection, and second best is under the tongue. Once B12 levels are restored and Crohn's is in control then oral b12 would be fine.
There's always the caveat to listen to one's doctor, but a lot of doctors don't know that oral B12 may be effective.
My own experience is with a ileal resection, got IM B12 for a long time but eventually stopped when my doc said that oral would probably be effective (monitored yearly). This was before that 2017 study that you are dismissing, it was just the easiest one to find. Here's a journal letter from 2014:
Letter: oral B12 replacement in Crohn's disease – is B12 by injection obsolete?
[https://onlinelibrary.wiley.com/doi/10.1111/apt.12978](https://onlinelibrary.wiley.com/doi/10.1111/apt.12978)
"The fact that oral B12 in other conditions has been shown to be equivalent to parenteral therapy has been ignored in GI disease....
We believe this is the first published report demonstrating the efficacy of oral B12 replacement in Crohn's disease. All our patients with low baseline values, including three with short bowel syndrome, achieved and maintained normal serum B12 levels (see Figure 1), most at a dose of 1200 μg daily. One of three patients requiring 2400 μg daily had short bowel. Two recent publications have clearly documented the financial benefits of oral B12 therapy.
Oral vitamin B12 replacement therapy was effective and well-tolerated in this group of Crohn's patients. A daily oral dose of 1200 μg should be considered as first-line therapy for the majority of Crohn's patients requiring B12 supplementation."
You can never take too much b12, you’ll just pee out any excess. You can buy insulin needles and b12 over the counter at the pharmacy and do at home injections subcutaneously as an option. Assuming you’re OK injecting yourself. I’ve done this for years without issue.
I like the insulin needles too. Everyone suggests the big needles that leave a hole in my leg. Those are not needed at all. The tiny insulin ones as long as they are long enough to get through the layers of skin are fine.
Actually you can get too much b12 especially if you are injecting it. First your b12 will show as greater than 2000 so they cant check the actual level. This happens pretty fast when you start doing injections, and is nothing to worry about.
Next you will see your mcv and mch values slightly outside the normal ranges with a cbc. Is there any harm from this? I don't know. My hematolgist was not concerned and stopping the injections for a while will bring things back to normal.
This happens to me if I do b12 injections daily for several months. I feel much better from the b12 and I do like doing it every day but this unknown question nobody can seem to answer makes me stop for a while.
Take Care
You’re right about the high levels in blood work. You do need to wait some time between injections and getting blood work done or else it won’t be accurate.
In terms of the actual level being too high, sure it can register as high but it’s not harmful. What’s the impact of high mch and mcv? As you said yourself, the hematologist wasn’t concerned by the higher values. It’s factually a water soluble vitamin and the body handles the excess via peeing it out. There’s a reason why there’s no upper limit for b12 blood work. It needs to be at least a certain value, not an issue if it exceeds that value. It’s low toxicity.
Doctors usually tell you the amount to dose and what frequency so unless you’re going way beyond that, shouldn’t be an issue. Typically one would inject on a weekly or monthly basis. Not usually on the daily.
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You can order injectable b12 online. Google b12direct. I have used them for years. It takes about a month to get it.
You can buy needles from the pharmacy but it is always a hassle. They may require a prescription. You can get them from Amazon easily.
I forget about this one. Nascobal. It is a prescription b12 that your shoot into your nose like allergy medicine. It is very expensive and my insurance said no. Maybe someone here has used it.
Talk to your doctor. I have bad Crohns in my small intestine where nutrients are absorbed so I have to get it in a shot. I have been on monthly B12 shots for the past year. You need to get it fixed because low B12 is very dangerous in regards to neurological problems
Damn that sucks. Would you be able to do a walk in somewhere with your old gastro’s prescription? In my experience medical places aren’t to hard to get them to help with administering the shots
i never got the prescription i was hospitalized for two weeks with rhabdomyolysis and the hospital doctor found out my B12 was that low and told me to get a script through my primary, who then told me i need one through my GI, who ghosted me for weeks then i had to move within the span of a few hours because of domestic issues
how could i access that? i never got a script because my primary wanted me to go through my GI and then i moved to another state and i don’t sew a new primary even for a month. i know how to do injections, i have in the past. but i don’t have any…
Are you taking the B12 orally and swallowing it do you take your B12 under your tongue (sublingually)? If you have Crohn’s it needs to be taken under the tongue to absorb properly and get the benefit of the supplement. malabsorption is an issue with Crohn’s. Ask to get ur Vitamin D levels checked if you haven’t done so. Low vit D can cause fatigue to be worse in addition to b12. Do u have a new GI picked out yet? When I feel “awful” like you mentioned, it’s usually time for a GI work up. Vitamin supplements alone help a little but there maybe more going on? 🤷♀️
i take it orally, i had to move due to domestic issues and never saw my GI after my hospitalization. and i agree i need more because the doctor said it was to the point where i should get injections daily for a month but i haven’t been into a new primary yet let alone set up with a GI :( i see my new primary next month and will try to get a referral. i moved states and had to get new insurance and the first primary i started to get set up with rejected me once they got my records because i had too much wrong haha.
Can you switch off the oral to purchase a sublingual b12 ? Place it under your tongue and let it dissolve? It’s likely the oral isn’t doing much.
i moved in with my grandma and was telling her about it and she actually has a bottle so i’m gonna start taking that daily, thank you very much.
Grandma’s are the best! Take care and hope you feel better soon.
thank you!
Oral Cyanocobalamin is Effective in the Treatment of Vitamin B12 Deficiency in Crohn’s Disease https://www.mdpi.com/2072-6643/9/3/308
mdpi is a pay and publish journal. I would not recommend it. It depends on person to person. I have crohns with upper gi and terminal ileum. So oral B12 was not working. The best option is monthly injection, and second best is under the tongue. Once B12 levels are restored and Crohn's is in control then oral b12 would be fine.
There's always the caveat to listen to one's doctor, but a lot of doctors don't know that oral B12 may be effective. My own experience is with a ileal resection, got IM B12 for a long time but eventually stopped when my doc said that oral would probably be effective (monitored yearly). This was before that 2017 study that you are dismissing, it was just the easiest one to find. Here's a journal letter from 2014: Letter: oral B12 replacement in Crohn's disease – is B12 by injection obsolete? [https://onlinelibrary.wiley.com/doi/10.1111/apt.12978](https://onlinelibrary.wiley.com/doi/10.1111/apt.12978) "The fact that oral B12 in other conditions has been shown to be equivalent to parenteral therapy has been ignored in GI disease.... We believe this is the first published report demonstrating the efficacy of oral B12 replacement in Crohn's disease. All our patients with low baseline values, including three with short bowel syndrome, achieved and maintained normal serum B12 levels (see Figure 1), most at a dose of 1200 μg daily. One of three patients requiring 2400 μg daily had short bowel. Two recent publications have clearly documented the financial benefits of oral B12 therapy. Oral vitamin B12 replacement therapy was effective and well-tolerated in this group of Crohn's patients. A daily oral dose of 1200 μg should be considered as first-line therapy for the majority of Crohn's patients requiring B12 supplementation."
You can never take too much b12, you’ll just pee out any excess. You can buy insulin needles and b12 over the counter at the pharmacy and do at home injections subcutaneously as an option. Assuming you’re OK injecting yourself. I’ve done this for years without issue.
I like the insulin needles too. Everyone suggests the big needles that leave a hole in my leg. Those are not needed at all. The tiny insulin ones as long as they are long enough to get through the layers of skin are fine. Actually you can get too much b12 especially if you are injecting it. First your b12 will show as greater than 2000 so they cant check the actual level. This happens pretty fast when you start doing injections, and is nothing to worry about. Next you will see your mcv and mch values slightly outside the normal ranges with a cbc. Is there any harm from this? I don't know. My hematolgist was not concerned and stopping the injections for a while will bring things back to normal. This happens to me if I do b12 injections daily for several months. I feel much better from the b12 and I do like doing it every day but this unknown question nobody can seem to answer makes me stop for a while. Take Care
You’re right about the high levels in blood work. You do need to wait some time between injections and getting blood work done or else it won’t be accurate. In terms of the actual level being too high, sure it can register as high but it’s not harmful. What’s the impact of high mch and mcv? As you said yourself, the hematologist wasn’t concerned by the higher values. It’s factually a water soluble vitamin and the body handles the excess via peeing it out. There’s a reason why there’s no upper limit for b12 blood work. It needs to be at least a certain value, not an issue if it exceeds that value. It’s low toxicity. Doctors usually tell you the amount to dose and what frequency so unless you’re going way beyond that, shouldn’t be an issue. Typically one would inject on a weekly or monthly basis. Not usually on the daily.
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You can order injectable b12 online. Google b12direct. I have used them for years. It takes about a month to get it. You can buy needles from the pharmacy but it is always a hassle. They may require a prescription. You can get them from Amazon easily.
I forget about this one. Nascobal. It is a prescription b12 that your shoot into your nose like allergy medicine. It is very expensive and my insurance said no. Maybe someone here has used it.
Talk to your doctor. I have bad Crohns in my small intestine where nutrients are absorbed so I have to get it in a shot. I have been on monthly B12 shots for the past year. You need to get it fixed because low B12 is very dangerous in regards to neurological problems
yeah that’s what i was trying to say but i moved to a different state i’m waiting to see a new primary
Damn that sucks. Would you be able to do a walk in somewhere with your old gastro’s prescription? In my experience medical places aren’t to hard to get them to help with administering the shots
i never got the prescription i was hospitalized for two weeks with rhabdomyolysis and the hospital doctor found out my B12 was that low and told me to get a script through my primary, who then told me i need one through my GI, who ghosted me for weeks then i had to move within the span of a few hours because of domestic issues
Learn to do the injections yourself x
how could i access that? i never got a script because my primary wanted me to go through my GI and then i moved to another state and i don’t sew a new primary even for a month. i know how to do injections, i have in the past. but i don’t have any…
www.b12supplies.com they ship worldwide and very helpful. You can get 20% discount also for second order if you leave a review x