[mrsD]

B1 can be helpful. In the old days, Thiamine was a treatment given by doctors for people with neuropathy. I think it is worth a try. If you take folate, do the methylfolate type, just in case you have that MTHFR genetic mutation that control methylation.

If you have a level of B12 using methyl form at 1000 or more you don't need to increase your B12. 1mg a day should be enough.
But if you tested and did not stop taking it before the test, your levels may be artificially elevated, and inaccurate.

[Marie33]

[QUOTE=mrsD;1137569]B1 can be helpful. In the old days, Thiamine was a treatment given by doctors for people with neuropathy. I think it is worth a try. If you take folate, do the methylfolate type, just in case you have that MTHFR genetic mutation that control methylation.

If you have a level of B12 using methyl form at 1000 or more you don't need to increase your B12. 1mg a day should be enough.
But if you tested and did not stop taking it before the test, your levels may be artificially elevated, and inaccurate.

MrsD
My B12 level is around 1050. Ok, then I will stay at 1000 a day. I thought I should go higher since Melody says shes doing great at 5000 a day.

My Folate is: Solgar Folate ,800mcg, (as Metafolin). Is this OK? or should I try to get methylfolate? Also, how much B1 is a "safe" amount. Im getting ready to order more. How much should I be taking a day. Just so you know, aside from this SFN , I am otherwise healthy.

Thank you so much for your Response.

[mrsD]

[QUOTE=Marie33;1137572]

Originally Posted by mrsD

B1 can be helpful. In the old days, Thiamine was a treatment given by doctors for people with neuropathy. I think it is worth a try. If you take folate, do the methylfolate type, just in case you have that MTHFR genetic mutation that control methylation.

If you have a level of B12 using methyl form at 1000 or more you don't need to increase your B12. 1mg a day should be enough.
But if you tested and did not stop taking it before the test, your levels may be artificially elevated, and inaccurate.

MrsD
My B12 level is around 1050. Ok, then I will stay at 1000 a day. I thought I should go higher since Melody says shes doing great at 5000 a day.

My Folate is: Solgar Folate ,800mcg, (as Metafolin). Is this OK? or should I try to get methylfolate? Also, how much B1 is a "safe" amount. Im getting ready to order more. How much should I be taking a day. Just so you know, aside from this SFN , I am otherwise healthy.

Thank you so much for your Response.

The Solgar is fine...it is methylfolate.

300mg of regular thiamine a day in divided doses. Or Benfotiamine 150mg-300mg a day.

When you go higher with B12, you do not get that much increase in absorption. At 1000mcg a day you absorb about 13mcg of that if on an empty stomach. You might get 20mcg a day at 5000... Some people choose to use more. That is their choice. In the beginning it would give faster results if you were really low, but once at a good level, the excess will be excreted by the kidneys.

[Malia]

That good to know.... and I do know that it has improved my PN. I just bought some gummies to pop during the day too... so a spritz here and a pop there plus my Jarrow B's/Benfo with my morning smoothie... I am a happy girl Thanks...

[Yolo]

Thank you so much for the above information on B12. I really appreciate your informed discussion I had no idea I should be taking my methyl B12 away from food for instance. I will do so from now on. Now wonder it never has seemed to make a difference whether I took it or not. I agree the methyl form is best--and why not take it rather than not? Meanwhile I have a problem taking methyl folate or at least so I think. Maybe if I take it by itself rather than in a methyl B pill it will be OK. Wiped me out for two days the two times I took it. Pretty scary! I could hardly move I felt so under it. My grandmother used to get B 12 shots and swore by them. My condition seems to be more complicated. I had 23 and me done and discovered yes I do have inherited B12 tendency towards deficiency as well as multiple methyl and immune system difficulties--including a tendency to have low blood pressure with runaway inflammation from stress from ACE and other mutations which often leads to migraines etc. etc. But that is another topic, eh? Or is it? Things could get a bit confused here. I am new to the forum so will need to find my way...

[Kitt]

Welcome Yolo.

[MelodyL]

[QUOTE=Marie33;1137568]

Originally Posted by mrsD

This is a reminder -- glenntaj is correct.

The ranges for vitamins reflect generalized "normals" who were chosen and NOT taking any supplements.

High range B12 is desirable because getting it into the central nervous system is by passive diffusion from high to low. The lower the blood level the less gets into the CNS.

Doctors are so used to ranges in blood tests indicating disease, they think high B12 is dangerous. But there is no upper limit to B12 use...so don't worry about it.

The only concern is for the rare person with polycythemia vera... this is a rare disease of the bone marrow where too many red cells are formed. This would show up in a normal CBC screening test.

Thank you MrsD and Glenn..
I am still supplementing with B12 even though my Level is good (high)! Do you think in your educated opinion(s), it makes sense to increase my Meth-B12 to 5000 mcg? I cant help but wonder if a higher dose of B12 (like Melody) along with B1 and Folate (800mcg) could help with the pins and needles and burning in my legs and feet (?)...

Hi there. I now have Alan taking the same Methyl B-12 that I do. He needs to ramp up his energy. This will take time but I don't see any ill effects.

I have had doctors pooh pooh my taking Methyl B-12 and then ask me quietly later 'Melody, I have neuropathy, can you tell me about that B-12 again". These are DOCTORS who are supposed to KNOW. Yeah, they know Pills and Drugs, not what supplements can help people with PN.

It amazes me sometimes.

Why not try the 5000 for awhile?. I knew right away that this is the amount that would help me.

And get ready if you share this with your doctor. He'll say you are crazy and what the h are you doing? Thank god, my primary care guy is a bodybuilding physician who knows all about my Methyl B-12 and my sprouts. I just brought him a ziplock bag of my sprouts into his office during Alan's appointment on Friday. He took one look and said "Oh my sister will put this in my salad tonight. I love these things".

So some doctors know good stuff and some doctors don't know a darn thing about anything.

We have had specialists come to our neuropathy meetings just to learn from US.

And while Alan was in the hospital (you are going to LOVE this) a doctor waltzed in, told Alan he was a neuropathy specialist and told Alan 'you have diabetic neuropathy". Alan said "Sir, with all due respect I have had neuropathy for over 20 years and I'm a diabetic only 3 years" I was tested all those years with glucose tolerance tests and every test known to man, I did NOT get PN because I was diabetic"

What was the doctor's response to Alan: "you don't know what you are talking about, OF COURSE YOU WERE DIABETIC"

See what I mean?

Some of them are clueless and don't know what they are talking about.

Melody

[KC]

Hi there. This is my first post in this forum, which I came across while researching B12...which I came across while searching for answers regarding "numb arms at night." It has been a most informative read, and I thank MrsD for her knowledge shared here, and others who have contributed their experiences here which have spurred the information sharing.

I first recall experiencing the arm numbness about eight years ago, being woken by the irritation during the night for a few nights. It has come and gone since then, but usually only a night here and there.

However, a few weeks ago it began hitting me for successive nights, waking me several times a night, and leaving me unable to get relief for any duration of time. The numbness lingers in the morning and is apparent when I am sedentary.

I started with 1000mcg cyano about two weeks ago, before finding this forum. It didn't make any noticeable difference.

After reading this thread about four days ago, I started taking 2000mcg and I also took on empty stomach. I feel that made some kind of impact. I felt a day of low energy due to what *might* be related to the supposed potassium and iron stores being drawn upon for red blood cell production, as I read here and on Rose's site.

Two days ago I bought 5000mcg methyl lozenges and started those. ...And these last two nights I have not been woken by this issue...though it is certainly still present.

...I hope this is a true positive response to the B12 and that things continue to improve.

I wonder if I might not see other benefits over time as well. ...I have suffered from mood swings my entire adult life--monthly cycle related mostly, and a depressive temperament in general.

In the past, I used to donate blood (I'm talking in my late 20's...I'm 43 now), but I eventually stopped, as I was so often rejected for low hemoglobin levels. So, I think this B12 thing has big potential for my health.

I eventually might add some other supplements that have been mentioned here in relation to this issue.

Thanks again for such great information.

[Kitt]

Welcome KC.

[KC]

Thanks, Kitt.

Well, as I half expected, symptoms are getting worse. I will for now assume that is part of the program...things getting worse before they get better, as Rose suggested on her "Repair/recovery" page:

Do not despair if a symptom becomes worse at some point after treatment begins. This sometimes happens when the body is addressing that particular problem, and often the symptom becomes dramatically worse temporarily (briefly to much longer). Symptoms can even multiply previous to great improvement. No guarantees, but this often happens when damage has been serious.

Many people who have serious damage experience what I call a honeymoon period within days or weeks of starting treatment. At that point it may seem that improvement is so rapid they begin planning to dance on tables within a few months. Then, in those who experience great fatigue and increased symptoms as their bodies begin very hard work on serious repairs, fear is common and reasonable.

Last night was periods of burning and pressure in forearm and hand, in addition to pins and needles and numbness. Also a moment of deep pain in left forearm. Action is much more in left than right arm.

Also seem to be much hungrier since going to 5000 mcg methyl. I bought ground meat for first time in long time and have made a few burgers.