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Crohn's Disease Forum » Diet, Fitness, and Supplements » When B12 shots are not working


02-06-2012, 09:16 PM   #1
Jobell
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When B12 shots are not working

I take monthly B12 injections ever since I had a resection 7 years ago. But recent blood work confirmed that I am still low on B12. My doc told me to double up and take injections every 2 weeks for 3 months and see if that helps. Anyone else experience that? What causes B12 shortage if I am getting injections?
02-06-2012, 09:39 PM   #2
David
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What was your B12 level? I'm aware of some people taking weekly injections. It may very well be that you just needed to up your dose.
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02-09-2012, 01:16 PM   #3
Jobell
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they never told me my level. I HATE that docs never give me actual information, they just say 'this is no good.' and I know I have the right as a patient to request the details, but I am always in 'good girl' mode, just trying to listen and absorb the instructions, and it is only when I get home that I think, 'I should have asked for numbers.'

So you have heard of people needing more than once a month?
I once read about the difference between blood levels and cellular levels, but that was more the reverse... as in you could have high enough levels of B12 in your blood, but for some reason it is not absorbed properly into the cells. But I don't even seem to have it in my blood!

Does low B12 cause tiredness? cause I am wiped out day and night. Does low B12 cause insomnia? Cause I have serious sleep issues lately (and of course that exacerbates the previous symptom - tiredness! lol)
02-09-2012, 01:20 PM   #4
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HI Jobell, I know all to well about not knowing your markers or level amounts, you have to ask and they have to tell you. It is your body and YOU need to know. I am on b12 shots and have had no problems and have had 2 resections. You may not be absorbing it. Try getting digestive enzymes they help absorb, I get the Life brand, cheaper and works better than the expensive brands, at shoppers drug mart... I live in there lol. What part of Ontario are you in? Also try melatonin, most people get tired and their b12 is fine.
02-09-2012, 01:21 PM   #5
David
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Stop being the good girl then Take control of the management of your disease. Start getting your exact numbers.

1. There are people here that take weekly injections.
2. Yes, it's much more complicated than just serum B12 levels. If you'd like me to take the time to explain, I'd be happy to.
3. Yes, low B12 can cause fatigue and insomnia, but so can a lot of other things. In the case of vitamins and minerals, I'd make sure they're testing your iron, B12, folate, and vitamin D at the very least. And if you're only taking B12, according to the University of Maryland Medical Center, you should take a complex B vitamin as well as taking just one of the B vitamins can cause imbalances in the others.
02-12-2012, 11:10 AM   #6
Jobell
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@Pen, thanks! I am in the GTA. I have what is supposed to be one of the top Crohns specialists in Canada, if not all of north America. He runs many scientific studies, and looks so worn out. He said he had high hopes for the Omega 3 supplements study, and was very disappointed with the results.
@david, if I am not absorbing B12 through my intestines, then is my absorption of other b vitamins compromised too? are all b's absorbed in the terminal ileum? I take (orally) large d vitamin supplements (2000 per day) and I had my iron and blood tested recently. I need to get these results for a baseline to start keeping track of the numbers. I could be low, or I could be off-the-charts low, and my doc will just say, "you are low, get more injections."
02-12-2012, 11:24 AM   #7
David
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All B vitamins are water soluble and most are passively absorbed in the jejunum and/or ileum. B12 is unique in that 99% of it is absorbed in the terminal ileum (the last part of the small intestine that is also commonly inflamed in people with Crohn's Disease) and requires binding of something called intrinsic factor. The two B vitamins that people with CD are most commonly reported deficient in are B12 and folate (vitamin B9). I still have a lot to learn about the other b vitamins and am not sure about how common people with CD are deficient. Part of the problem is testing for such deficiencies is very rare and I haven't found many studies.

As a Crohnie, 2000iu of vitamin D might actually not be enough. Resources I respect a great deal suggest a starting point of 5000iu and to get levels checked from there. Read this thread all the way through for some great vitamin D info. And yes, get those numbers so you can start keeping track. Keep track of the numbers, how you feel, and symptoms so you can start creating correlations.
02-12-2012, 05:39 PM   #8
Jobell
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Vitamin D used to be considered toxic at high levels. I know the current thinking is that those levels have been grossly understated in the past, but how do you know that 5,000 isn't bordering on toxicity?
My husband was told to take 3,000 because his level was low, but my doc told me 2,000 is adequate. I also have bone density issues, so I feel I should be taking the high end of a safe dose, not the lower end!
Last week I stumbled upon a study saying that they may reduce those numbers again, a little bit, to say 1,500 should be enough (with some sunshine exposure).... wish the science was a little more sure of itself!
Maybe I will try to up it another 1000 and see if it feels right.
Is Folate the same as folic acid?
Sorry to pick your brain all the time... it has helped me a lot here in pinning down what to do and what makes sense.
02-12-2012, 05:53 PM   #9
David
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You didn't read the entire thread I linked to I had an email conversation with the DIRECTOR of the Vitamin D Council Dr John Cannell were he stated (bold added by me):
I suspect Crohn’s disease will be helped with vitamin D and even cured in some (?many) cases, if the dose is adequate.

Vitamin A needs to be stopped. Accutane is a vitamin A derivative.

25(OH)D levels need to be 70-80 ng/ml, which requires 5,000 – 10,000 IU/day of vitamin D3, to treat Crohn’s disease.

Vitamin D needs cofactors to work properly. If I had Crohn’s, I would definitely pay the extra cost and buy a vitamin D with the expensive K2, and mg, zn and boron. These are the cofactors vitamin D needs to work. For example, the vitamin D receptor is like a glove. At the base of the fingers of the glove is a zinc molecule. Most Americans are zinc deficient. The same is true for boron, magnesium and probably K2.

I recommend the new D-Plus from Bio-Tech Pharmacal. Make sure it is the new formula, not the old one. The dose is three pills per day for 5,000 IU, this is important as most people take only one or two and so are still vitamin D deficient. Take with largest meal of day.

Also, ulcerative colitis will also be helped by ADEQUATE doses of vitamin D.

You have my permission to post this email.

John J Cannell, MD
There are countless people taking far more than 2000iu. Is Vitamin D toxicity possible? Yes but it is VERY rare and the published studies point to doses of greater than 40,000iu per day.

Now, 2,000iu MAY be plenty for you! I suspect not, but if that's what you're comfortable with, then get tested after awhile. If your serum levels are 70 or greater, then you're good. If not, up the dose. And I would suggest discussing increasing the dose with your doctor before you do so. Now, you may need to take it some info to help convince them but it's best to do all this with the blessing of your doctor so everyone is on the same page.

Folate is the natural vitamin B9. Folic acid is the synthetic form of folate used in supplements and to fortify foods.

Don't apologize for asking questions! That's what we're here for
02-13-2012, 07:35 PM   #10
Jobell
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This is great stuff. I like the idea of upping the D3 because it is so easy and comfortable. Other options can be difficult (like major dietary changes, or lots of time for mediation). I am too stressed, I do need to address that as well, but the D3 makes sense to me.
Do you personally know of any anecdotal evidence of how this has impacted actual Crohns patients?
when we do these things, are we hoping for a complete remission, reduction of symptoms... cure? Do you think anyone achieves anything with just one method?
02-13-2012, 07:38 PM   #11
David
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I personally wouldn't go so far as to say cure and feel that was a bit strong for the doctor to say However, there are a lot of vitamin D threads on the forum where people report a lot if improvement in various symptoms. However, I think vitamin D is just one piece of the puzzle. But it's probably a corner piece.
02-15-2012, 10:31 AM   #12
Jobell
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Hi David,
I actually got the vitamins recommended to take with the d3 and I am trying to up my dose to 4,000 for a couple of weeks. I actually think I feel better (placebo effect? surely too early for any change?).
Anyway, thank you again for the info.
02-15-2012, 10:32 AM   #13
David
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Good luck, keep us updated
02-15-2012, 10:26 PM   #14
Jobell
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Just found out that my B12 is around 125. it seems that normal should be above 200?? is that right?
If so, and this is while I am taking injections, can I do anything else to up my B12 level? I am now taking bi-weekly injections. I have also started to take a Vitamin B (all the other b's) supplement. I am going to turn into a giant pill soon.
02-15-2012, 10:31 PM   #15
David
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I'm of the opinion that you should actually aim for 500+. 125 is VERY low. I'd discuss the idea of weekly injections with your doctor until you can get that up. Sometimes loading doses are needed. IF your doctor scoffs at the idea of 500+ then ask them to test your methylmalonic acid and homocysteine levels instead.

You're doing good Jobell, I'm proud of you for taking an active role in this.
02-16-2012, 08:55 AM   #16
Jobell
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Thanks David. Actually, until I discovered this site a couple of months ago, I had never admitted to anyone (except my husband) that I had Crohns. I suffered 12 years without talking to a single person. I didn't want the stigma, or people to view me as 'sick'. I was angry too I guess. And I didn't want disease to overwhelm my marriage either.
So that is why I am kind of diving in here. It is the first time I have ever found anyone to talk to, the first time I can share and gain valuable info, I guess the first time I am accepting my illness and taking a proactive role in managing it.
This site is a lifeline to someone like me.
06-05-2012, 12:48 PM   #17
KatieMcloughlin
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Hi there,
Sorry for joining this discussion as I don't have Crohns disease but I have a few questions about Pernicious Aneamia. I was diagnosed with it about 3 years ago. My B12 level was only 80 and I started on a course of injections once a week for 8 weeks, every two weeks for 8 weeks and then once monthly. My level went up to 400 but it would plummet very quickly. I continued monthly but didn't get my bloods done for another 9 months and then it had dropped to 190. I got 4 injections in three months and it only went up to 220 so I got another 4 in three months and now it is down at 180! How can this be? I have been tested for Crohns disease and had full bloods done and that was all fine. I don't understand how my level can drop when Im taking injections. My doctor is not referring me to a blood specialist but I would like to know what it could be? I'm 27 and it has really had an effect on my ability to deal with upsetting situations when I use to be very strong. Im also tired a lot and get worked up over tiny things. Just wondering why I wouldn't be absorbing the injections as I'm starting to get worried as to what could be wrong with me. Any help would be very appreciated
06-05-2012, 01:00 PM   #18
David
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Hi Katie,

You have nothing to apologize for, we're happy to help as much as we can Some questions if you will:

1. How were you diagnosed with PA? Did they simply do a B12 test and diagnosed you on that or did they actually determine that you are not secreting any/enough intrinsic factor or auto-antibodies are causing havok?

2. Do you have ANY digestive issues? Anything from acid reflux to diarrhea.

3. What is the dose of the injections you are taking?

I have some ideas but before I formulate a response, answers to those questions would help
06-10-2012, 04:49 PM   #19
KatieMcloughlin
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Hi David, thank you for your quick response. I was away working this week so only getting back to this now. Sorry for the delay

I was diagnosed by a blood test and they said there were no signs of the antibodies. However at a later bloodtest they said it had tested positive. So one positive and one negative test, however the doctor has said she really thinks I have PA.

I would suffer from cramps or acid reflux after certain foods sometimes.I also can go from constipation to diarrhoea at times but I always thought that was just a small bit of irritable bowel syndrome. I had a scope done a few years ago to check for stomach ulcers but that was all clear.

My prescription is for Neo-Cytamen 1000MCG/ML (Hydroxocobalamin 1MG/ML)

I just can't understand why my levels haven't gone up after numerous injections. I was wondering if there is any other condition I could have alongside this or something. I'm being referred to a blood specialist but I don't know what they will do differently to the GP.

Thank you so much for your help,

Katie
06-14-2012, 02:58 PM   #20
David
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Hi Katie,

My apologies for the delayed reply, I was out of town.

1. True pernicious anemia at your age is reasonably rare. Now, that may indeed be what you have, but I personally would make them check for everything else that can cause low B12. That you also have digestive issues makes me wonder, of course, that can be a symptom of B12 deficiency. Common causes include inflammatory bowel disease, Celiac Disease, and more.

2. It's not surprising to me that your B12 levels dropped so fast after the injections. I say this because pernicious anemia and other causes of B12 deficiency often interfere with enterohepatic circulation. This is the system that allows your body to recycle and store B12 for longer term usage. If I was you, I would strive to keep my B12 levels WELL in excess of 500 pg/ml. The Pernicious Anemia Society who you may want to connect with if PA is indeed your final diagnosis recommends a level above 1000pg/ml. There are other forms of B12 such as patches and nasal sprays that you may also want to look into as I can imagine taking so many injections may be a little hard.

I hope this helps, let me know if there's anything else we can do for you
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