why some people need more B12 then others

[Sundancer]

https://pernicious-anaemia-society.org/research/surprise-findings-by-research-team/

 

[Wolfcub]

Thank you @Sundancer Further investigation could well hold a key to help those not only with pernicious anemia but with CFS also? I hope so.

I quadrupled my usual vitamin B complex (rather than B12 alone) the day before yesterday, and yesterday, for the first time in all this, I didn't just feel better.....I felt normal!
So I did the same thing yesterday, but today don't feel right again. Back to the same.
This issue can utterly swallow Hope.....

Anyway I shall continue with a higher dose vitamin B complex and see what happens.

 

[Mary]

@Wolfcub - it might be better to try increasing the Bs one at a time, starting low and going slow, and seeing how you react to each one. You may need more of one and not another - e.g., I have felt much better since taking methylfolate in addition to B12, as well as extra B6 (P-5-P) (which was shown to be severely deficient by Nutreval testing) and B1 - thiamine, in the form of benfotiamine. However, I felt worse when I tried extra B2, though many people need more B2. We're all different.

However, you should be on the lookout for low potassium when increasing B12 and methylfolate. These vitamins may make you feel better initially for a day or 2 but it's not uncommon to suddenly feel much worse with severe fatigue and other symptoms of low potassium. This thread explains why.

Another possibility is to develop symptoms of low phosphorous which I don't think is as common, but I've had this too. It started after I increased my B1 - initially I had a nice boost in energy and then the next day severe fatigue. It felt different than low potassium, and also potassium didn't help with this fatigue. I'd done reading about refeeding syndrome (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/ ) and theorized that perhaps my phosphorous had tanked. So I drank I think 3 glasses of kefir (high in phosphorous) and sure enough by the afternoon the horrible fatigue was going away. I still get symptoms of low phosphorous off and on - the chief symptom for me is severe fatigue but I also noticed it makes my brain fuzzy. So many ways we can get fatigued with this illness!

 

[Sundancer]

well, @Mary , maybe you just answered my not yet asked question.

even though B6 has lowered enormously said the last bloodtest ( happy with that, was much too high) B1 did not.

I may have taken the wrong kind. So I'll wait out the next bloodtest ( and stopped B1) and after it has normalized try benfotiamine

 

[Mary]

@Sundancer - was your B1 too high? You may not need more. I've been told that benfotiamine is more bioavailable than regular thiamine. I don't have diabetes, but benfotiamine is the form that is supposed to help with diabetic neuropathy.

So if your B1 was too high, then I'm guessing benfotiamine might make it even higher - or maybe I misunderstood you?

 

[Wolfcub]

@Wolfcub - it might be better to try increasing the Bs one at a time, starting low and going slow, and seeing how you react to each one. You may need more of one and not another - e.g., I have felt much better since taking methylfolate in addition to B12, as well as extra B6 (P-5-P) (which was shown to be severely deficient by Nutreval testing) and B1 - thiamine, in the form of benfotiamine. However, I felt worse when I tried extra B2, though many people need more B2. We're all different.

However, you should be on the lookout for low potassium when increasing B12 and methylfolate. These vitamins may make you feel better initially for a day or 2 but it's not uncommon to suddenly feel much worse with severe fatigue and other symptoms of low potassium. This thread explains why.

Another possibility is to develop symptoms of low phosphorous which I don't think is as common, but I've had this too. It started after I increased my B1 - initially I had a nice boost in energy and then the next day severe fatigue. It felt different than low potassium, and also potassium didn't help with this fatigue. I'd done reading about refeeding syndrome (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/ ) and theorized that perhaps my phosphorous had tanked. So I drank I think 3 glasses of kefir (high in phosphorous) and sure enough by the afternoon the horrible fatigue was going away. I still get symptoms of low phosphorous off and on - the chief symptom for me is severe fatigue but I also noticed it makes my brain fuzzy. So many ways we can get fatigued with this illness!

Thank you very much @Mary because I am very very new to this and have a lot to learn.
I do generally eat a lot of high potassium foods....plus I take a multivit/mineral A-Z each day which will contain a little, so that will "up" the count a tiny bit. But almost everything I put in my mouth contains potassium.

Anyway, interestingly ....I was moaning in my last post because I was sure I felt no benefit today from the quadrupled B complex dose -but tonight after taking my second batch with food (I have spread that high dose out into 2 stages) -I felt an upswing again a few hours later. This felt posiitve and steady and not a "wired" kind of upswing but a more healthy feeling one. Not quite as wow! as yesterday, but last night I didn't get enough sleep at all, so that might have something to do with it.

I am wary to blow any trumpets about it yet. There have been so many false hopes on this trail. I will keep going and see....

But another thing I am learning fast is that CFS is not the same shape for everyone, and I never understood that before. Now I do. And what is helpful to one person can be toxic to another.

I do very much appreciate the extra info. you have included there Mary. Things to watch out for.

 

[Critterina]

I don't have PA, but I find that the number of doses (of sublingual methylB12) matters more than the strength of the tablet. I use the 5000mcg because it's cheap at Costco and I tolerate the other ingredients, but when I've used 1000 mcg I don't see a difference. What I do see is the difference between taking it 2x/day and 3x/day. Just one more experience.

 

[Sundancer]

was your B1 too high? You may not need more. I've been told that benfotiamine is more bioavailable than regular thiamine. I don't have diabetes, but benfotiamine is the form that is supposed to help with diabetic neuropathy.

So if your B1 was too high, then I'm guessing benfotiamine might make it even higher - or maybe I misunderstood you?

trying to be back, have had a horrible viral infection, still chairbound.

err, My B6 and B! were to high. GP had tested for that, reason is tingling and sometimes burning of handpalms and footsoles.

so I stopped taking B6 ( which I took extra, because it helped sleep, this in small amounts) did not help. So I stopped Bcomplex and changed for single Bvitamins.

at the same time I started up taking B12, as the B1 was not very much too high after some weeks I began taking it again, but in smaller dose then formerly in the Bcomplex)

Now had a new blooddraw, the B6 has lowered considerably, but the B1 not, so now I think that maybe I should use a different form.

reference B6: 35-110
reference B1: 67-150
march 2017 B6 = 644 B1 = 265 after this draw I stopped taking extra B6, but took 10mg P5P

I started B12 in december 2017
januari 2018 B6 = 511 B1 = 228 after this draw I stopped taking Bcomplex so no B6 but after about a month I started taking B1 again. In the Bcomplex was 110mg thiaminHCL. The B1only is 12,5 mg twice a day... The B1 single is a different brand, but the same thiaminHCL


may 2018 B6 = 125 B1 = 238

so riddle me that????

( hmm, thinking about it, I changed in the other B's too, that of course influences everything too. Why is it a baddie to have too high B1. GP doesn't seem interested in the other B's ( except folium acid that is, which is high as I use folate)

maybe I'll post this as a topic apart too, maybe @Freddd can shed some light on this.

 

[Mary]

have had a horrible viral infection, still chairbound.

Sorry to hear that! Have you ever tried andrographis? It's an amazing herb which has helped me a lot. I used to get a lot sicker a lot more often until I started taking it. It's an immunomodulator, so I take a break from it every once in awhile. And if I get acutely sick (like you are), I'll add in an echinacea/goldenseal combo to the andrographis and this has all been very effective for me.

so riddle me that????

Why is it a baddie to have too high B1.

Afraid I am not the right person to answer this! I don't know if high B1 on blood work is like high B12 on blood work, in that high B12 blood work does not necessarily mean you have too much B12 but rather can be an indication that you are having trouble getting it into the cells and utilizing it. Though I think B12 is harder to absorb and metabolize than the other B's. Anyways, yes Freddd very well may know more about this. And I know there are people on this board who know a lot more about the B's in general than I do --