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  #1  
Old Fri Nov 15, 2013, 09:32 AM
Mseth Mseth is offline
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Vit B12 levels

Hello,

My mothers B12 levels in Apri/May 2013 were 200-300 (normal 200-800), as this was on low normal side, she has been supplementing with 500 mcg oral Methylcobalamin. Her B12 test this week shows a level of 1200, which is far above the normal range. Her folate levels are normal.

Some concerns are:

B12 being water soluble, should the excess not have been removed by the body naturally?
Could the supplement have caused such high levels, she has discontinued the supplement, and will test again after 2 weeks
Does transfused pRBC contain high B12?
Could there be some B12 utilisation issues, which is why its still sitting in the blood instead of being utilised?

Thanks for any suggestions.
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  #2  
Old Sat Nov 16, 2013, 08:17 AM
Marlene Marlene is offline
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Usually your b12 blood serum will he higher with supplementation. It's best to stop it 3 to 4 days prior to the blood draw for testing.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Sat Nov 16, 2013, 01:43 PM
Mseth Mseth is offline
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Marlene - Supplement was stopped 2-3 days prior to testing. Levels will be rechecked during the next blood draw as well. Will serum homocysteine give some idea on utilisation? Serum MMA test is not easily available here.
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  #4  
Old Sun Nov 17, 2013, 10:32 AM
Marlene Marlene is offline
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As you know, b12 serum testing is not very accurate in assessing true B12 status. MMA & homocysteine can give you a better indication but these too are not perfect. Too bad that MMA is not available to you.

My personal opinion is that a 1200 level is not problem when supplementing with B12 in that there is no danger to high-normal or high levels. If it was high without supplementing, I would be more inclined to think there's a conversion issue.

Wait to see what the next test show. You may want to switch to another form of bio-available B12 and reduce the dosage to 3x/wk. Or just rely on a good bio-available B Complex. Your goal is to try to and maintain a minimum level of 500.

The liver houses about 5 years of B12 so it can take a while to replenish those stores. Once you've had a B12 deficiency/insufficiency, you usually need to continue with B12 supplementation on some level.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Sun Nov 17, 2013, 11:40 AM
Mseth Mseth is offline
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Quote:
Originally Posted by Marlene View Post
My personal opinion is that a 1200 level is not problem when supplementing with B12 in that there is no danger to high-normal or high levels. .
Thanks Marlene. Reading this is a relief, i was getting anxious about how it could go so high. Hopefully, the next results will be closer to normal now that she is off the supplement.
As a supplement she was taking Methylcobalamin, which is the bio-available form of B12. In the meanwhile, I have also got her Thorne Resesarch Methyl Guard, which has methylfolate and B6 as well. But she can try only once B12 level returns to a mid-normal level of around 500, as you have suggested.
Incidentally the hematologist says that transfused pRBC contain sufficient B12, and there is no need to supplement with B12, I am just wondering if the high levels could be a combination effect of the transfusions & supplements.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #6  
Old Sun Nov 17, 2013, 04:58 PM
Chirley Chirley is offline
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That doesn't sound quite right. I was severely transfusion dependant (3 units every two weeks) for a long time and I still had low B12. I need courses of B12 injections from time to time. Homocysteine levels can be high with folate deficiency rather than B12 deficiency so if the level is high there needs to be a clinical judgement as to which vitamin is deficient.
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  #7  
Old Mon Nov 18, 2013, 06:55 AM
gramous gramous is offline
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hallo,

I think high rate B12 is not a problem. It is beter a little too much that too many for the erythropoesis.
Take care
béné
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  #8  
Old Mon Nov 18, 2013, 07:45 AM
Mseth Mseth is offline
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Quote:
Originally Posted by Chirley View Post
That doesn't sound quite right. I was severely transfusion dependant (3 units every two weeks) for a long time and I still had low B12. I need courses of B12 injections from time to time. Homocysteine levels can be high with folate deficiency rather than B12 deficiency so if the level is high there needs to be a clinical judgement as to which vitamin is deficient.
Chirley, it did not sound right to me either initially, which is the reason the supplements were started, but with 500 mcg daily oral B12, moving from 200 to 1200 levels in 5 months seems strange. My mother has normal-mid/high folate levels, no supplements, she gets it from her diet i guess, but she has no dietary source of B12, so a high homocysteine would likely point to a B12 issue in her case.
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  #9  
Old Mon Nov 18, 2013, 07:55 AM
Marlene Marlene is offline
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I had to get outside help on the issue regarding B12 in red blood cells. I knew they can measure various heavy metals and minerals in red blood cells but I never saw anything regarding B12.

So here's a study in pubmed on this. Apparently there is B12 in red blood cells. I doubt that B12 is recycled like iron and that itransfused red cells can correct B12 status. The more important thing here is as the end...healthy people have more B12 than cancer patients.

http://www.ncbi.nlm.nih.gov/pubmed/8352241
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #10  
Old Mon Nov 18, 2013, 08:15 AM
Marlene Marlene is offline
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Mseth....I think the methly guard would be a good choice. You really don't have to wait until it drops to 500. 500 is really the lowest you want it to be. Gramous makes a good point in that anyone with blood production issues or neurological issues usually need more than the average healthy person.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #11  
Old Mon Nov 18, 2013, 12:32 PM
Mseth Mseth is offline
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Marlene, how does one figure out the hypermethylation that may happen with methylfolate supplement when folate levels are normal thru diet. Drugs used for MDS, like Vidaza/Dacogen are hypomethylating.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #12  
Old Mon Nov 18, 2013, 01:57 PM
Marlene Marlene is offline
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I believe you can get tested but I just don't know off the top of my head what that would be other than looking for the genetic MTHFR defects. I believe you can also figure it out by trail and error. When correcting undermethylation you usually start with the methyl B12 and then add in the folate. You work up slowly so as not to flood the body. If you have too many methyl groups, I believe you'll have some symptoms. The way to correct it is with niacin. Niacin gobbles up the methyl groups. I think cucurmin and green coffee extract does too.

Methylation takes place pretty much everywhere and I think those drugs are targeted to specific "things" for lack of better understanding on my part.

I'll look for the link(s) and post them when I find it.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #13  
Old Tue Nov 19, 2013, 09:44 AM
Marlene Marlene is offline
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Mseth,

Dont' know how helpful these will be. You can also post your question on their forum and see what response you get. Understanding hyper/hypo methylation at the gene level is still in its early stages. From what I understand, you can have both hypo and hyper occurring at the DNA level simultaneously. I'm not sure that it's about having too much of folate/B12, but more about where the breakdown is occurring in the DNA/RNA methylation patterns.

http://mthfr.net/methylfolate-side-effects/2012/03/01/
http://mthfr.net/how-much-methylfola...ke/2012/03/22/

It's really not as easy as one would think to figure this out. For us, I focused on making sure to add in B12 first, then the methyl folate, and then a B complex. Of course John is in a partial stable remission and really has no symptoms associated with MTHFR problems. But he's been at this, on some level, for the past 9 years.

Here's an article, just in case you need something to put you to sleep, on Caner and methylation. It sent my head spinning.

http://jco.ascopubs.org/content/22/2...ull.pdf%20html
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #14  
Old Tue Nov 19, 2013, 06:11 PM
tom30 tom30 is offline
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For what it's worth... I asked my hematologist about getting tested for the MTHFR gene and he said it wasn't worth it, that a lot of people have the defect. I tried different variations and combinations of B12, B12 injections, methyl folate. B12 injections made me feel like crap at first I thought it was the flu shot that I got along with the first injection but I felt very tired the 5 weeks I got the injections. So I stopped that as it had no real affect on my CBC. I went back to the Jarrow methyl B12, at some point early last year I added Jarrow Methyl folate basically it had the same affect as the b12 injections, felt tired all the time. So I stopped that and it cleared up. I couldn't make much sense on the information on this that out there on the internet I might give it another try at some point and see if there is a combination that would be helpful and I might get the MTHFR test from my GP. I had my B12 and folate tested last month B12 was 870 with the jarrow b12 dissolved under my tongue for at least 30 min I take 2 pills a day. Didn't take it for a few days b4 the test. I started the dissolving routine on a whim from what I read somewhere that it works better. My folate from last month was 12.3 ref range 3.1-17, he also ran something called folate RBC and that was 885 in a ref range of 500-1500. On my 60 day folate supplementation test my cbc stayed steady no swings either way. I assume there is something up with the way i process the methyl but have decided not to monkey around with it too much right now. my CBC's have been stable rbc 4.8,hgb16.6,mcv99.5,wbc3.3,plt91 over the last 12 month. I started a paleo diet and a combo d3/k2 mk7 supplementation along with the B12 around the same time late last year. My RBC and hgb improved a bit plt's and wbc stayed pretty much where they were before that. One thing that I noticed was the CBC results from different labs consistently vary if that makes much sense, so not I only look at the labs from the hematologist and those are stable. So now I don't get excited when my platelets show 120 at my local doctor since now I assume that it's variations in his equipment and not a real number.
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  #15  
Old Wed Nov 20, 2013, 08:15 AM
Marlene Marlene is offline
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Hi Tom,

Your counts look great. Maybe not normal but pretty darn close. From everything I've read, it can be difficult to figure out the right mix, form and dosage when dealing with methylation problems...even for doctors who understand it well. I think your insights serve you well.

I'm also surprised, in a good way, that your GP tested your RBC folate levels. So few do that and it's a better assessment of folate.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Thu Nov 21, 2013, 08:11 AM
Mseth Mseth is offline
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Marlene, thanks for the links. I have been through the mthfr.net site earlier as well, without any definite conclusion. Suggested use mentioned on the Methylguard bottle is very high at 6 capsules/day(3 caps X twice).
With my mothers high B12 levels, its all very confusing. I'll wait another few weeks to see how B12/folic acid levels are before starting her on this.
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  #17  
Old Thu Nov 21, 2013, 08:22 AM
Mseth Mseth is offline
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Tom, i guess everyone reacts differently. My mother found no difference in symptoms while supplementing with B12, and no difference now that she has discontinued for about 10 days. She took 500 mcg daily for abt 5 months and saw a big increase in B12 from 200 to 1200. We look at the blood counts(specifically the RBC/Hb) for seeing if it has made any difference and that does not seem to happen. She is currently also on Vit K2/D3, liquid K2(Thorne Research) and liquid D3(Biocare,UK). Also Curcumin Meriva and GNC CoQ10(somedays). I hope all this put together helps improve the blood count or atleast keep it stable.
Your counts look great, so whatever you are doing is correct, stay well!!
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  #18  
Old Thu Nov 21, 2013, 09:18 AM
Marlene Marlene is offline
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Thornes methylguard plus may be a better option. Higher amounts so you can do 1 - 3 capsule 1x/d depending on what dosage you want.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Wed Dec 4, 2013, 11:58 AM
Mseth Mseth is offline
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Though it did not seem right earlier, it seems that there is definitely some connection between the transfused pRBC and Vit B12 level. 3 weeks after discontinuing the methycobalamin supplement, B12 levels are still 1200+. There is no dietary source of B12 and B12 levels prior to dx & transfusions was 200-300. Homocysteine is 13.52(ref range 5 - 15).
As advised by Gramous & Marlene in earlier posts, a high B12 may be beneficial, but could there be some other reason for this high B12 value which needs investigation?

Thanks for any information.
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  #20  
Old Thu Dec 5, 2013, 08:07 AM
Marlene Marlene is offline
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I'm wondering if her B12 was actually higher than 1200. Not all labs will report b12 levels over a certain amount. So basically, their testing will top out versus reporting the actual b12 amount. So anything over X is just disregarded.

Without more extensive testing (more than the B12 serum and homocysteine), it's difficult to figure what's going on with her B12 status.

I guess I would considered a good B12 complex that has all the bio-active forms and a good trace mineral complex.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #21  
Old Thu Dec 5, 2013, 09:50 AM
Mseth Mseth is offline
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Marlene, the exact value 3 weeks back was 1286, and now it is 1268. I found a lab which does the MMA Urine test, will this be helpful?
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  #22  
Old Thu Dec 5, 2013, 02:44 PM
Marlene Marlene is offline
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I missed the "+" on your post. Not sure how helpful the MMA will be but it can't hurt. Don't know how expensive it is though.

There are some newer test but I'm not familiar with how they're used and if they even know how to fully interpret them yet. I'll have to do some research and think on this a while.

The tests to look into are the unsaturated b12 binding capacity, holoTranscoblamin, Trans Coblamin II and deoxyuride suppresssion. I really don't know exactly what they are looking at/for with these. I assume something related to B12 transport. I haven't had a need to dig deep into these. It's supposed to rain all day tomorrow so maybe I'll get a chance.

The only other thing that comes to mind is if she is having problems with her liver or if her disease is causing it.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #23  
Old Sat Dec 7, 2013, 09:00 AM
Mseth Mseth is offline
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Marlene, the MMA Urine test is not expensive here, but they give result only in positive/negative. My mother test results are negative, which basically means there is no B12 deficiency.
Both the hematologist and internist are not unduly concerned about this high 1200+ B12 level, and say its ok for her to take a B-complex as well.

Thanks for taking the time to read all my posts and advise me.
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  #24  
Old Mon Dec 9, 2013, 08:02 AM
Marlene Marlene is offline
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Sounds like a good approach at this time. Take care...Marlene
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