Hi All-- I want to find an expert in the US. If they are near Seattle, WA would be ideal. I was diagnosed with PA 7 years ago at age 40 via antibody to instrinsic factor plus near 100 serum b12 levels by general primary doctor. Never was recommended an endoscopy, but after reading decided I should have one. I receive monthly cyanocobalamin injections and serum b12 levels hover between 300-500. I saw a naturopath that gave me a methycobalamin plus leukovorin ( 60-100 mg) two months ago which is folinic acid. Then I read that Leukovorin is greatly contraindicated with people with PA (even treated) so I am worried. Have symptoms of feeling faint at times, tiredness and tingeling in hands and feet intermitently. Otherwise in good health. Any advice appreciated.
Anyone know of a PA expert in the US? - Pernicious Anaemi...
Anyone know of a PA expert in the US?
Hi,
If you are not doing well on the folinic acid, I'd go back to Dr and explain. No point in taking something that is not doing you good!
Kind regards,
Marre.
Thanks Marre-- High doses of folic acid or the leukovorin she injected is contraindicated for people with PN as it masks the disease in the blood. It states this on the drug literature clearly. Therefore, as the naturopath was unaware, I don't really trust this naturopath to treat my PN.
-L
Hi,
I think its more that one should never give high doses of folic in what ever form to any one who is B12 def and not getting B12 treatment, then the blood markers of B12 def (high MCV) will not show up as high doses of folic will mask those (it will lower the MCV). I'm putting this very simple, its far more complex than that but you may get what I'm saying.
It does not matter so much what kind of folate treatment, its the adding of artificial folate that causes the masking say. But people on B12 treatment may need extra folate, as all B vitamins need each other, some do better on certain artificial folate preparations than others, it also depends if you need extra folate. Ideally you keep all in balance, giving the body to much of one vitamin can do more harm than good. Again its very simply put by me. I assume you mean PA when you write PN?
You may find reading this helpful, see:
and this:
bcshguidelines.com/document...
I hope this helps,
Kind regards,
Marre.
I agree with Marre. I'd never heard of leucovorin but I've just done some research and the advice appears to be the same as for any high dose form of folate/folic acid. Unfortunately this advice is often misinterpreted. The warning is that high dose folate/folic acid will correct any haematological signs of B12 deficiency (e.g. high MCV) but will not correct the B12 deficiency and will allow serious neurological damage as a result of the B12 deficiency to continue. This does NOT mean that folate should not be supplemented in cases of B12 deficiency rather that it should not be supplemented on its own without sufficient B12 supplementation to correct the B12 deficiency. In fact, B12 needs a healthy level of folate in the body and the folate level can fall when B12 supplementation starts as the additional B12 puts extra demand on the folate. Many of us find that we need to take some form of folate to optimise our B12 supplementation.
Having said that, which form of folate to use and how much of it to take is a whole other can of worms.
I wish I new of an expert in the Seattle area also, but I did finally find a naturopath who has been very helpful to me. She's at Rain City Integrative Clinic (they have a website if you're interested). I've only had one upper endoscopy done back when my primary physician was trying to find the cause of my B12 issue. It wasn't terribly helpful for me, although I understand that it is a good idea for people with PA to be monitored because of an increased risk of stomach cancer.
Are you required to have a referral to see a gastroenterologist? If not, you might try just booking an appointment with one and talking over your concerns and the reasons you're interested in having the test done. (Although I can't guarantee this approach will work. I once met a terrible gastro who basically told me that he wouldn't do the test because it was too expensive.)
Hi Galaxie-- Thank you. I am also confused on whether the methycobalamin injection is indeed superior to the cyanocobalamin version or if it is a scam. There are doctors in the US who maintain that the amount of cyanide is so low in the cyano version of B12 that more exists in the food we eat, therefore that it is not a concern. They state that those who state methyl is superior to cyano version seek to gain from selling overpriced vitamins. However others state the methyl b12 version of injections are superior. I am really confused. Do you know the answer by chance? What do you receive at your naturopath's office and what is her name? I have the autoimmune kind of PN, the antibody to IF so I need injections rest of my life.
Thanks,
Lisa
I use the cyano version. I've never tried the methyl version (partly because of the price and partly because I knew the cyano version worked for me so I didn't want to experiment with a different type).
The reason the cyano version is safe is because cobalamin inactivates cyanide. (Hydroxocobalamin is actually the recommended antidote to cyanide poisoning.) All the cyanide molecule does in cyanocobalamin is to keep the cobalamin stable so the body can turn it into the methyl and adenosyl cobalamins that your body actually uses. The only exceptions on the safety of cyano are 1. if you're a heavy smoker, there is a risk of too much cyanide building up in your system so adding more is a bad idea. 2. if you or a family member has Leber's optic disease, the cyano version is to be avoided because it will make that problem worse.
The argument for using the methyl version is that it eliminates the conversion steps the body has to take to turn cyano into methyl (but the body would still have to turn methyl into adenosyl, so some conversion would still have to take place).
Some people seem to benefit from one kind of preparation over another. It all ends up coming down to personal preference whether you choose to use cyano, hydroxo, or methyl preparations.
As far as I know (and I have looked), there has never been a case of cyanide overdose from cyanocobalamin injections. They are safe. Given that cyano has been around 50+ years, I think it would be apparent by now if there was any actual danger to using them.
I remember that the previous forum didn't allow us to give names of practitioners and I'm not sure what the policy of this new forum is, but this is the website for the practice and it gives a little info on each person. There are only two naturopaths there, so you've got a 50/50 chance if guessing. 
raincityintegrative.com/#!a...
Hi Galaxie-- Thank you for the info. I have heard that the hydroxo form inactivates cyanide. However, had not heard it was because of the cobalamin. Where did you learn that information? Someone on another b12 support website told me that the cyano version is more associated with headaches and migraines than the methyl or hydroxo version as it is toxic even at low levels. I am struggling with migraines 3 days per week that began with the diagnosis 6 years ago at age 40 (no longer able to work) so am wondering if there may be a correlation with the shots. I did not have migraines prior to age 40 and the diagnosis.
I can't remember where I read about it. But if you compare the chemical makeup cyanocobalamin to hydroxocobalamin, you can see that the only difference is that cyano uses a cyanide molecule while hydroxo uses a hydroxide molecule. The definition of hydroxide (according to wiki) is:
"Hydroxide is a diatomic anion with chemical formula OH−. It consists of an oxygen and a hydrogen atom held together by a covalent bond, and carries a negative electric charge. It is an important but usually minor constituent of water."
Actually, as I'm poking around and reading up on this subject, the reason hydroxocobalamin works so well as an antidote to cyanide poisoning is because it binds the cyanide molecule turning the hydroxocobalamin into cyanocobalamin. The body can more easily excrete cyanocobalamin than it can cyanide.
That is mentioned toward the end of page 7 on here: aacn.org/WD/CETests/Media/C...
Well, I'm not getting a map out, but I've got addresses in Oregon, Chicago and San Francisco.
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