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09-30-2012, 01:18 AM   #1
Catherine
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Vitamin B12

How do you work out amount vitamin b12 to supplement? Current level is 258 (150-700). Gp said I supplement if I like as it wouldn't do any harm. No advice on amount.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
09-30-2012, 01:54 AM   #2
Jennifer
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I used to take 1,000mcg a day and my B12 was a little higher than yours I believe (been so long I don't remember the number but around here 400 was the lowest I believe). Got blood work done a little over a month later and there was no change. Took two every night and retested, still no change. So now I get B12 injections every other month and my level is now over 1,000 which is good. Will know the real number come Monday when I see my GP again.

Honestly 258 is pretty low so you'll probably have to start doing the injections at some point. Right now you can try supplements like I did (I got the ones you put under your tongue after trying out the regular pills that you swallow and seeing no results) and then retest in a month or so to see if it went up at all and go from there.
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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.
09-30-2012, 03:01 AM   #3
DustyKat
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Hey Catherine,

I am currently in the same situation with Matt, his levels are about the same as your Sarah's, or are they your's?, and I am none too happy about it.

I will call David in on this as B12 is his passion in life. You might also like to look over this older but very informative thread...

http://www.crohnsforum.com/showthread.php?t=28156

Dusty.
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09-30-2012, 05:08 AM   #4
Catherine
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Interestly both Sarah and mine are with 4 points of each other. Mine have been around the same number for 5 years.

Sarah b12 appears to have stopped dropping, so maybe tablets will work.
457 11/08
292 05/09
254 7/10
258 3/12

Have you noticed anything with Matt folate levels, Sarah are increasing while the b12 is dropping. As in from 1200 to 2130 over the same period.

Crabby, I doubt I can't gp to agree to injections as b12 are well with in range.
09-30-2012, 09:58 AM   #5
David
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Thanks for tagging me Dustykat.

The first thing we need to do here is establish the unit of measurement. For vitamin B12, here in the USA we utilize pg/mL and most other places utilize the SI measurement which is pmol/L. Catherine, based upon being in Australia and that range, I'm sure your readings are in pmol/L. Do you have a coin Catherine? If so, flip it. Heads and you're deficient in vitamin B12, tails you're not. I say that because as this paper showcases, a level of 258 pmol/L (349 pg/mL) gives you a 50% chance of being deficient in vitamin B12. Very simply, the current range for B12 is absolutely terrible. Taking it a step further, those studies were done in people who did not have Crohn's disease. I suspect that the chances of actually being deficient with such numbers are much higher in Crohnies (I realize you're undiagnosed Catherine).

What do we do in this situation?

1. If I was a doctor, I would be testing your methylmalonic acid level. It is a MUCH better indicator of deficiency than the serum B12 test. Good luck getting a doctor to do this though.

2. Obviously we need to supplement. How much? If our roles were reversed, I would take 1000mcg orally per day. In just one month, I would get tested again. If you absorb B12 properly, in just that month your B12 levels should increase a lot. Like jump to 400-700 pmol/L. If your level stays in the ~200 pmol/L range, that tells us something is wrong. Not only is it a clue about what may be wrong with you, but it also tells you that you need to have injections. With that data and the paper I linked to as evidence, most doctors would likely agree.

3. If Sarah is taking daily B12 tablets and has those numbers you just posted, something is very wrong and she needs on injections pronto.

4. Based upon my research, everyone should strive to get their level above 369 pmol/L (500 pg/ml) and if I had Crohn's, I would PERSONALLY get mine above 516 pmol/L (700 pg/mL) but as Dustykat says, I'm a little wacky about B12 (and nutrients in general) so take that as you will.
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09-30-2012, 10:52 AM   #6
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Gosh, I have no idea what my B12 level is. I just decided to go ahead and take B12 daily for the heck of it. Hope I'm not getting myself in trouble by doing that
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Diagnosed~ July 2012 Crohn's Disease
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B12
09-30-2012, 10:55 AM   #7
David
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Please get your B12 level tested Panda. It's extremely important. Did you see how Catherine was able to provide data over a long term for her daughter? Such data will be EXTREMELY important for you. You might be supplementing but not absorbing it and slowly experiencing severe and potentially irreparable damage to your nerves and body.

If finances/insurance are an issue, you can even do what I do and bypass everyone and get it done for $39.00. *edit* oops, you're in Canada. Dunno if that works there or if you have something similar.
09-30-2012, 11:10 AM   #8
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My next appointment I will ask for them to check all my levels.
Here in Canada we have no out of pocket expenses for medical procedures. So getting it tested is free.
If I am not low in b12 but still take it, would that be harmful to me?
09-30-2012, 12:08 PM   #9
David
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Very unlikely that it would be seriously harmful as it is water soluble and you excrete what you don't need. If you have problems with your kidneys or very rare disorders, then yes. However, there is some information out there that suggests supplementing just one B vitamin can cause imbalances in others. B12 is pretty darn safe but oversupplementation of other vitamins and minerals can lead to very serious side effects.

In the end, I don't think we should blindly supplement. Treat supplements as medication.
09-30-2012, 04:15 PM   #10
DustyKat
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@Catherine. Matt's folate levels have always remained fairly static at around the 1400-1600 mark. I have read that B12 deficiency can result in increased folate levels but I am confused as to whether this is only when the deficiency is caused by intrinsic factor or whether it is B12 deficiency by any cause. Do you know David or Aussie?

Matt's B12 at diagnosis, Dec '10, was (all values in pmol/l):

449

His level post op, Aug '11:

580

And his levels since, commencing Oct '11:

237
251
267
241
234
250
237 (Sept '12)

We have a new GP starting at the end of this month so I am going to discuss it with him and ask that he test his methylmalonic acid. I will ring the lab in the meantime and ask if they test for that or what the go with it is in general. At present we are using Laverty.

Dusty. xxx
09-30-2012, 04:26 PM   #11
David
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Dusty, I haven't read that B12 deficiency can cause folate to increase. Can you link me to that please? Some feel that supplemental folic acid can sort of "mask" signs of B12 deficiency and other studies/papers I've read felt the opposite was true and can make the anemia or cognitive symptoms worse. In the end, except in very dire circumstances, I am quite anti folic acid and feel everything should be done to get proper amounts of folate instead. I absolutely despise all the folic acid fortified foods. It's such a terrible idea.

Those B12 levels aren't too good though we'd want to see his methylmalonic acid to know for sure. In conjunction with his low vitamin D levels I'm not at all happy with Matt's nutrient levels and would personally recommend every other nutrient under the sun be tested that they're willing to get a good idea of his nutritional status.
09-30-2012, 04:34 PM   #12
Catherine
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All Sarah levels are prior to supplements and dx of crohns. I will check the amount of the supplement. Sarah levels have been tested over a long period due to anemia where increased ferritin levels do not appear to increase hemoglobin levels.

I will start supplement myself after seeing skin specialist on Wednesday.
09-30-2012, 04:51 PM   #13
DustyKat
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This is one reference David, I know there was at least one other but I can't locate just now...

http://www.livestrong.com/article/28...-serum-levels/

...perhaps it was the study mentioned in the article about Pernicious Anaemia but I can't get it to open now.

I will ask the new doc about doing a nutritional panel as well. His current GP is good but Jesus he can be so bloody black and white at times. The new guy is apparently very thorough and has his finger on the pulse so I will see where i get with him.

Care to suggest a list to start with David?

Dusty. xxx
09-30-2012, 05:29 PM   #14
David
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I would mix these up based upon symptoms but from what I know of Matt, in order of importance: Vitamin D, Vitamin B12, iron, magnesium, vitamin B9 (folate), selenium, calcium, vitamin K, zinc, vitamin A, vitamin B1, vitamin E, vitamin B6, vitamin C.
09-30-2012, 05:33 PM   #15
David
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All Sarah levels are prior to supplements and dx of crohns. I will check the amount of the supplement. Sarah levels have been tested over a long period due to anemia where increased ferritin levels do not appear to increase hemoglobin levels.
Possibly because she's deficient in B12.

5-Deoxyadenosylcobalamin is required by the enzyme that catalyzes the conversion of L-methylmalonyl-CoA to succinyl-CoA. This biochemical reaction plays an important role in the production of energy from fats and proteins. Succinyl CoA is also required for the synthesis of hemoglobin, the oxygen carrying pigment in red blood cells.
Source
09-30-2012, 05:35 PM   #16
David
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Dustykat,

This is probably why the folate levels increase with B12 deficiency. I've read this before but it didn't stick I guess

Diminished activity of methionine synthase in vitamin B12 deficiency inhibits the regeneration of tetrahydrofolate (THF) and traps folate in a form that is not usable by the body (diagram), resulting in symptoms of folate deficiency even in the presence of adequate folate levels. Thus, in both folate and vitamin B12 deficiencies, folate is unavailable to participate in DNA synthesis. This impairment of DNA synthesis affects the rapidly dividing cells of the bone marrow earlier than other cells, resulting in the production of large, immature, hemoglobin-poor red blood cells. The resulting anemia is known as megaloblastic anemia and is the symptom for which the disease, pernicious anemia, was named (3). Supplementation with folic acid will provide enough usable folate to restore normal red blood cell formation. However, if vitamin B12 deficiency is the cause, it will persist despite the resolution of the anemia. Thus, megaloblastic anemia should not be treated with folic acid until the underlying cause has been determined (5).
Source
09-30-2012, 05:42 PM   #17
DustyKat
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Thanks David.
09-30-2012, 05:47 PM   #18
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Definitely push for the selenium. Your doctor will look at you with a blank face. But it is necessary for the reaction where glutathione peroxidase protects people from oxidative damage. It's decreased in many with Crohn's, especially those with resection. And I believe oxidative damage from hydrogen peroxide/peroxynitrite is a significant key in the cause of Crohn's Disease.

The presence of hydrogen peroxide, nitrates/nitrites (we get WAY too much these days) and superoxides results in massive amounts of peroxynitrite. In the present of selenium, glutathione peroxidase reduces hydrogen peroxide to water. No selenium, lots of H2O2 and tons of peroxynitrite. Bad news.

If you're bored, you can see my research dump here.
10-01-2012, 12:25 AM   #19
Aussie
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@Catherine. Matt's folate levels have always remained fairly static at around the 1400-1600 mark. I have read that B12 deficiency can result in increased folate levels but I am confused as to whether this is only when the deficiency is caused by intrinsic factor or whether it is B12 deficiency by any cause. Do you know David or Aussie?
Hi DustyKat, sorry about the late reply - don't think I can add anything, David has summed it up nicely.
10-01-2012, 01:13 AM   #20
DustyKat
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No worries. Thanks Aussie.
10-01-2012, 11:16 PM   #21
DustyKat
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Just came across the pathology lady at work and asked that she sus out if they test for methylmalonic acid. She will get back to me, so here's hoping!

Dusty.
10-03-2012, 11:16 PM   #22
DustyKat
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@Catherine, David.

I have my answer:

The local lab will collect the specimens but they are sent to Westmead Children's Hospital Sydney for testing.

They collect serum for quantitative and a random urine for qualitative.

It is non rebatable so the cost is $146.

Dusty.
10-03-2012, 11:31 PM   #23
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Ouch.

So if you do it and it's normal am I getting a bill in the mail?
10-04-2012, 12:13 AM   #24
DustyKat
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Bloody oath you will! You twisted my arm mate so you pay the medical expenses!
10-04-2012, 12:14 AM   #25
David
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And if it comes back high?
10-04-2012, 12:15 AM   #26
DustyKat
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You pay regardless David.
10-04-2012, 12:17 AM   #27
David
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Your Christmas bonus just turned into a Christmas e-greeting then.
10-04-2012, 12:22 AM   #28
DustyKat
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Oh nice. Bah humbug!

Seriously though, I didn't think the cost was too prohibitive given the fact that aside from the PBS script cost of his Imuran and some Vit D all of his health costs are free.
10-04-2012, 11:24 PM   #29
Catherine
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I don't think the cost is to high either, will do after my couple of months trial if still too low.

Dusty, have you try the other labs. Just using faecal cal as an example as this is non rebatable also. The two labs I have access one is quoting $75 and other $55. I choose the cheaper lab and end up being charges $40 on both occassions the test was performed.
10-05-2012, 01:27 AM   #30
DustyKat
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Ah now here's the story...

We have two doctors surgeries in town and each had pathology services operating out of them. The phlebotomist at the surgery we go to couldn't hit the side of a barn with a shotgun. Matt went to her once and that was enough! So we used the services at the other surgery but the doctor there is a dropkick so pathology pulled out which was a damn shame cause the path staff there were fab.

Matt goes to the next town to university most days so he went to a lab there in the town, first time, crap phlebotomist. Then he realised the university medical service has a pathology service, he used this last time he had blood and he said they were as good as the one we use to have in our town, bingo!

So long story short, which ever service has the best phlebotomist is the lab we use!

Dusty.
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