Tingling/numbness - feet/legs and hands
Shortness of breath
I did a symptom search on the web and B12 deficiency was one of the causes. I have been taking a PPI (Protonix) for 3 years and I understand that in some cases this can cause B12 deficiency by not allowing B12 to be absorbed. I had a blood test and the my B12 level was 241. The nurse said that I was in the normal range (200-900). I did get a B12 shot and have been taking B12 (1000mcg) per day and have shown a lot of improvement. I have read on here that even with "normal" values you can still have symptoms. Any opinions? What is a good value? I have read that the minimum should be 200 and other places I read it should be 500.
I would much rather be at least near the 900 value of a serum b12 than anything below 500, the Japanese PN experts say anything below 500 is very suspicious of B12 deficiency, i like my b12 levels to be well over 1000 just to play on the safe side.
It's great that your noticing benefits already, i too responded well to B12, i get shots of B12 Hydroxocobalamin off my doc plus i take 1 mg of B12 Methylcobalamin in supplement form every day, [ on a empty stomach for best asorbtion ] i also take a multi B every day as i believe that b12 needs the other vitamin B's to work the best.
Methylcobalamin is the active form of b12 and the best form to take in supplement form, B12 Cynocobalamin is ok, but our bodies have to convert it to the active form and we don't get as much out of it as the Methyl' and it takes longer to build up to a good level, but still works in the long run.
I hope you continue to improve.
Thanks for the reply! It is funny though because I had been seeing my doctor for these problems and I am the one to suggest the B12 test.
Yep, i had to ask for it too, b12 deficiency seems to be overlooked a lot going by my experience getting diagnosed & also other friends of mine who have PN as well... but what they class as ok in the lower range seems to be a bit scary to say the least... other PN friends have been in that lower range also have found some improvement or the progression has halted some what, with a multi B & B12 Methylcobalamin supplementation, its not going to help everyone with PN
because of the many causes of PN but i do wonder how many are classed as in the ok range but are really not.
I'm very definately no expert on B-12.
I do know B-12 defincency can be simply horrid in really really bad cases, even a death sentence for some.
So it IS important to check to see if your B-12 level is OK.
But I can tell you my personal experience with it.
I do have PN.
I tested fine on the blood test for B-12. I don't remember the numbers..
Decided to take the Sublingual B-12 Methylcobalamin anyway (along with a B-complex tablet)
Couldn't hurt, might help.
After a few years of the suppliments I even went to having my Dr give me a B-12 shot each month for a year.
That became a tad too expensive for my budget so I quit after a year. The only benefit I found was my lips and eyes felt a bit less dry than normal. It had no effect on my PN.
Sometimes now I do still take the Sublingual B-12 Methylcobalamin anyway (along with a B-complex tablet). Simply because I feel it gives me more energy.
Hi snowmelts, i think when people have a true deficiency in B12 they would show at least some change in symptoms pretty early on when first starting the supplement, even though it may take years to undo the damage or even repair the nerves to some degree and the repairing process may differ in different cases, some show relief early or others like myself have periods of flaring of symptoms then followed by lessening of symptoms for a short periods then followed on by on going of flaring as the nerves are trying to regenerate.
The liver usually retains b12 for use later on when it's needed, once that supply has been used up by whatever reason, like diet, medication or malabsorption issues, that's when the nerves get damaged not only can the peripheral nerves can be damaged but can even affect the central nervous system and have horrible long term results.
B12 is certainly not the answer for everyone with PN, simply because of the hundreds of reasons for nerve damage, but a real good one to rule out.
i think when people have a true deficiency in B12 they would show at least some change in symptoms pretty early on when first starting the supplement, even though it may take years to undo the damage or even repair the nerves to some degree and the repairing process may differ in different cases, some show relief early or others like myself have periods of flaring of symptoms then followed by lessening of symptoms for a short periods then followed on by on going of flaring as the nerves are trying to regenerate.
I appreciate the information. I did show some improvement pretty shortly after the initial B12 shot and I have been on B12 supplements every day for a couple of weeks. I have good days and days that are not so good. How can you know if B12 was the problem when it can change from day to day? I don't mind the long term healing process as long as I know that B12 is the problem.
To rule out other known causes it's really best to see a neuro that specializes in peripheral neuropathy, there are many reasons why our nerves can get damaged, B12 defiency is only one of them, there are better tests than that serum b12 to evaluate a b12 deficiency, like Homocysteine and Methylmalonic Acid & lots of other testing can be done to rule out other known possibilities as well.
best of luck anyway