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Crohn's Disease Forum » Diet, Fitness, and Supplements » B12 injections for those in normal level


 
02-20-2012, 09:06 AM   #1
ormsklad
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B12 injections for those in normal level

Hi all

I have just got a copy of my blood resuilts from November 2011 and my value was 339 which is normal, but im very tired, moody etc just looking at the range they use (172-1162) I think im at the lower end of the scale. does anyone else have b12 injections even if they are within the normal range? Or do any oif you take it oraly anyway and if so what strengh to do take?

Thanks in advance!
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DX Small Bowel June 2011

Meds:

Budesonise June 2011 - Sep 11
Aza Sep 2011- Nov 11
6MP Nov 11- Nov 11
Pred Nov 11 on going
MTX Jan 12 ongoing
Folic Acid 5mg Jan 12
B12 Vit Tabs
02-20-2012, 04:19 PM   #2
Rebecca85
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If you're going to take it orally, you need around 1000 mg before you can begin to absorb it (assuming you have ileum involvement so aren't absorbing b12 from food. If you're absorbing from food you don't need supps) if you're worried your levels are low you could probably take double that, seeing as any excess will come out in your wee.

Check out the wiki for more info: http://www.crohnsforum.com/wiki/Vitamin-B12

I found 1000 mg tabs in my local Manor Pharmacy for a reasonable price. Unfortunately they didn't do much for me, so it seems my problems are unrelated to b12 deficiency.
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Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
02-20-2012, 09:00 PM   #3
Miss Underestimated
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I've gotten good results with the B12 from High Performance Fitness. I also take their liquid multi vitamin.
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*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
02-20-2012, 09:29 PM   #4
Jennifer
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I was on the low end of the normal range yet had the same symptoms as you. So my GI had me take it orally first and then do blood work again after a couple of months to see if there was any change. There was no change for me. I've already had a resection of my ileum so I absorb it even less. So I had a shot every month, did blood work again and it was much higher so now I have it done every other month where it seems stable.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
02-20-2012, 11:16 PM   #5
Becca1991
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In 2008 my B12 was in the 300s, in 2010 they were 159 normal 170> i been getting my B12 shots every 3months and in October 2011 they were 988 even tho im still very tired and that ive decided to stop getting them.
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Dx Terminal Ileitis Oct 09 (Age 17)
6/6/12- 12/6/12: Mini flare but gastro doc put it down to stomach bug
2/2/15-?: Mini flare awaiting calprotection levels. Calprotection levels: normal

Current Meds
Azathioprine 50mg
Allopurinol 100mg

Been on
Azathioprine 50mg x3
Humira April-August 2010
Prednisone October 2009-July 2010
Folic Acid
Multi Vitamins
Calcium 2500g
Vitamin D
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B12 injection
Ciprofloxacin 500mg
02-21-2012, 01:53 AM   #6
Rebecca85
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Don't forget guys, if you're supplementing b12 you ought to take a complex b vitamin as they work together, too much of one can disrupt the balance.
02-21-2012, 02:08 AM   #7
archie
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After my resection my level was about 160 so I took 1000mg oral supplements from holland and barrett and it increased to 860 I have since stopped taking it and I got my levels taken last week and I generally only feel tired at time of month, my levels are still normal but I forgot to ask what they were so I will find out. I haven't noticed a dramatic difference between taking the supplements and not. if I'm really tired I will take one but it's maybe the placebo effect!!
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Diagnosed Crohn's 2010
ileocecal resection 2010
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02-21-2012, 03:03 AM   #8
David
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You can DEFINITELY be technically deficient with a number is the 300's. It's all about your homocysteine and methylmalonic acid levels (the better determinants for B12 deficiency). If those levels are elevated despite your serum B12 being "normal", then you're very likely still deficient. Unfortunately, very few doctors test those levels so it's recommended you work to keep your serum B12 above 500.

If you're not absorbing B12 in the terminal ileum for whatever reason, then only 1% of an oral dose is shown to be absorbed. If you take 1000mg, that means you're absorbing 10mg which may be nowhere near enough to raise your levels to where they should be and other forms of supplementation should be looked at.

Those of you who are stopping B12, PLEASE be careful! Be sure to mention you stopped to your doctor so your levels can be monitored. If you're absorbing plenty now and don't need supplementation, that's fantastic. But if you're not feeling better AND you're not absorbing B12 AND you stop because of that, then you're going to end up feeling a heck of a lot worse.

Fatigue in someone with Crohn's Disease is indeed often caused by B12 deficiency and that's always the first thing I think of. But there are so many other potential causes Medication side effects, lack of exercise, malabsorption of other nutrients, vitamin D deficiency, and no doubt many more. I know it's hard but keep searching for the key(s)
02-23-2012, 02:57 PM   #9
ormsklad
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hi all

ive just had my levels back jan 187 and today 202 so i asked for a b12 jab and they said no. I asked my GP who said no as its within levels. I made an appointment at a private gp expalined all this to him and guess what he did a jab as it was needed. How do you get the follow up on the NHS?
02-23-2012, 03:00 PM   #10
David
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Thank goodness one of the doctors you saw has a clue about B12. Now the key is regular monitoring and regular injections if that's what you need. In addition, the University of Maryland Medical Center recommends that all B vitamins be taken together so you may want to look into a quality complex B vitamin to take as well.
02-24-2012, 12:59 AM   #11
Jennifer
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hi all

ive just had my levels back jan 187 and today 202 so i asked for a b12 jab and they said no. I asked my GP who said no as its within levels. I made an appointment at a private gp expalined all this to him and guess what he did a jab as it was needed. How do you get the follow up on the NHS?
Dunno what NHS is but both my GI and GP saw that it was low. GP said no but GI said it was a must and to tell my GP to do it since they did not give injections in his office. So I told my GP what my GI said and they shut up and did it. If yours doesn't do it then have the doctor who did give you an injection give them a call.
03-01-2012, 12:14 AM   #12
archie
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Hi I found out my b12 is 360 at the minute but I feel ok my CRP has dropped right down to 0.5 and all other bloods really good that's why I think I feel good. Personally I think when my inflammatory markers are raised slightly then that makes me tired. I'm going to keep a close eye in b12 though and if it drops again I'll take supplements.
03-01-2012, 08:45 AM   #13
pielady72
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I was on the low end of the normal range yet had the same symptoms as you. So my GI had me take it orally first and then do blood work again after a couple of months to see if there was any change. There was no change for me. I've already had a resection of my ileum so I absorb it even less. So I had a shot every month, did blood work again and it was much higher so now I have it done every other month where it seems stable.
Has it helped with the low energy feeling? I'm currently on prednisone and tapering down which hasn't gone to well. They just increased me back to 15mg and I'm to do that for one week then decrease by 1/2 tablet every 7 days. I take a b complex vitamin everyday and my levels they say are fine but I feel so low in energy. I was wondering if it helped you to do b12 by injection?
03-01-2012, 09:55 AM   #14
ormsklad
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well its made me feel more perky, I have had low energy for years but now I can do much more without getting out of breath
03-01-2012, 04:24 PM   #15
wolfem
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You can DEFINITELY be technically deficient with a number is the 300's. It's all about your homocysteine and methylmalonic acid levels (the better determinants for B12 deficiency). If those levels are elevated despite your serum B12 being "normal", then you're very likely still deficient. Unfortunately, very few doctors test those levels so it's recommended you work to keep your serum B12 above 500.

If you're not absorbing B12 in the terminal ileum for whatever reason, then only 1% of an oral dose is shown to be absorbed. If you take 1000mg, that means you're absorbing 10mg which may be nowhere near enough to raise your levels to where they should be and other forms of supplementation should be looked at.

Those of you who are stopping B12, PLEASE be careful! Be sure to mention you stopped to your doctor so your levels can be monitored. If you're absorbing plenty now and don't need supplementation, that's fantastic. But if you're not feeling better AND you're not absorbing B12 AND you stop because of that, then you're going to end up feeling a heck of a lot worse.

Fatigue in someone with Crohn's Disease is indeed often caused by B12 deficiency and that's always the first thing I think of. But there are so many other potential causes Medication side effects, lack of exercise, malabsorption of other nutrients, vitamin D deficiency, and no doubt many more. I know it's hard but keep searching for the key(s)

I completely agree with you! I had so many neuro issues and was convinced one shot every two weeks was enough. I think my stores were already depleted by the time they diagnosed me with crohns so I started having all sorts of problems. My digestion also started to go downhill from the deficiency. Anyhow, a combo of Bs is best in my opinion. I even tested low for thiamine at one point. I don't have my terminal ilieum so I'm deficient all over the place despite my crohn's being in check. I think if you become deficient in B12 you stop absorbing the others for sure. I have to give myself 1,000mcg daily now. Crazy.
03-01-2012, 04:49 PM   #16
wolfem
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Sorry I just have to post again because I have been through so many doctors the past two years and have been through the ringer. Literally. If it weren't for my NMD doctor I might not be standing. I even went to a neurologist and was told I didn't have deficiencies just because my reflexes were o.k. I have severe stomach issues now because of all this. One of my gastroenterologists told me I would never need b12 so I went on for 3 months without any shots in the beginning. So, I just want for everyone to know how something that seems so small can gradually snowball into other things. Just my experience.

Yesterday my doctor couldn't even touch my back it was so painful. Now its finally getting better with a combo of B12, folic acid, thiamine, magnesium, potassium, etc, etc.

Hope everyone finds their balance
04-01-2013, 05:15 AM   #17
Michelle from Down Under
 
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Hi there,

Just found out my B12 level was under 100 - explains why I have been feeling so awful. My question is how often should I be having the injections to get my level somewhere near reasonable?
I am not sure if different countries have different doses in the injections. My GP said every three months was normal I convinced him to give it to me monthly as my level is so low. But should I be pushing for it more regularly?

I haven't had surgery for IBD so should be able to absorb some B12...

Thanks everyone!

Michelle

Diagnosed with Crohn's in December 2011
Currently on Pentasa and Periethenol and meds for Gastric Reflux
04-01-2013, 05:41 AM   #18
DustyKat
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@ Michelle from Down Under...

At that level you should probably receive weekly injections initially but you would need to speak with your doctor about it and work something out with him/her.

This is an older thread but a fab read re: Pernicious Anaemia (B12 deficiency).

Dusty. xxx
11-09-2013, 07:15 PM   #19
mreyn
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I was just in the process of ordering my son a b12 spray.. he does get it in a multi vitamin, but not sure if he gets enough. But now reading.. should I not get him the b 12 seperate?
11-09-2013, 07:19 PM   #20
David
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mreyn, if your son is deficient in B12 due to Crohn's disease, there is no way the amount he gets in a multivitamin is anywhere close to enough. Has he been tested for B12 deficiency? If so, what was his specific level? If not, I suggest you get him tested before supplementing.
11-09-2013, 07:47 PM   #21
mreyn
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No, he has not been tested. I saw a Dr Mercola b12 spray with , I believe 1000 mcg of the methyl b12 which is what I was considering. I'm buying curcumin, fish oil and something for his headaches that has feverfew in it... and the b12 was the last thing I was trying to figure out. I had asked his gi previously when they said all labs they check since he 's on remicade look good.. if I needed to supplement with certain things and he said no... unless I wanted to get him a multi but not necessary... I tend to disagree
11-09-2013, 07:50 PM   #22
David
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I would strongly advise against blindly supplementing his vitamin B12. I would request that he be tested so you can find out if he is deficient or not. If he is, then you can monitor that level over time to ensure the supplementation is working and optimize the dosage and means of delivery. If he's not deficient, then you don't want to supplement as that can actually affect other vitamin levels in a negative way. There is a very delicate balance and we don't want to play with it unless necessary.
11-09-2013, 08:19 PM   #23
mreyn
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Thank you David. Does that apply to d3 too?

There's d3 in his multi but I've been giving him an additional one. Should I not do that?
11-09-2013, 08:34 PM   #24
David
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Yes, that applies to vitamin D as well. Although if you have been supplementing it, I would continue and discuss testing him with your doctor before stopping and a month after stopping if his level is sufficient and it is deemed he doesn't need to supplement. That way you can see if it drops without the supplementation.

In my opinion, every vitamin and mineral should only be supplemented if testing shows a deficiency. The only standout there is magnesium because it is so hard to get enough in the western diet. But even then, it should be done under the watchful eye of a healthcare professional who understands supplementation.
11-10-2013, 12:39 AM   #25
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How have you all gone about obtaining the actual figures of your results? The nurse just rings me and says theyre ok or not. Is there some way I can get a copy of past/recent lab work? Do I just call the office and ask? I recently got a "normal" b12 result and now I wonder if its on the low side of normal...
11-10-2013, 01:01 AM   #26
DustyKat
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I get copies of everything Novice…bloods and all other pathology including biopsy reports, imaging, correspondence and so on. In our case the GP is the central point of contact to which all this documentation is copied and sent so I ring and have them fax it to me.

Dusty.
11-10-2013, 04:44 PM   #27
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Thanks dusty. My gi gets all the results there directly as hes located in a hospital. I guess I could ask for copies to give to my gp. In the states would I have to pay for copies?
09-07-2014, 08:17 PM   #28
nogutsnoglory
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Resurrecting this old thread because I got a b12 shot and seem to feel better. I'm wondering if they might prescribe this so I can give myself shots at home.

Read that it takes several in the beginning even if not severely deficient to raise the levels. Anyone do a few in a short time or just the standard monthly?

I want more B power! I'm like a druggie for energy.
09-07-2014, 08:33 PM   #29
DJW
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I'm an energy druggie too. I find my B12 levels take a long time to go up. I'm still needing shots every other month. Its been like that for 9/10 months.
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09-07-2014, 08:40 PM   #30
nogutsnoglory
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How long after an injection do you feel better?
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