Question # 1 ---- I have read that hydroxicobalamin has replaced cyanocobalamin in the UK and that Japan uses methylcobalimin almost exclusively and is especially good reversing nerve damage. Further, cyanocobalamin is slightly toxic. Is either hydroxicobalimin or methylcobalamin available in the states?
Question #2 --- Knowing that once a person is on B12 injections, the B12 blood test is unreliable, what is a reliable test for pernicious anemia ?
Question #3 --- Is it true that if you have pernicious anemia, that eating meat such as liver does not help increase B12 even a little bit?
I just got Martyn Hooper's book, "Pernicious Disease: The Forgotten Disease" delivered, this morning and have glanced through but not read it.
There is a meeting with my G.P. ,tomorrow afternoon. He knows very little and is the same guy that wants to pause any B12 injections for four weeks in order to measure my B12 after me having nine weekly B12 shots. The tenth injection would be tomorrow if he had approved it, which he did not.
Thank you in advance for any answers and/or advice you might give me. It would help prepare me for battle.
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jersey-jazz
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1. Yes, we use hydroxocobalamin in Europe. That's because it is cheaper and more stable than methylcobalamin and doesn't need to be administered as often as cyanocobalamin.
No. Methylcobalamin is not better for reversing nerve damage. Once they enter the cells all forms of B12 are converted to cob(II)alamin. From that point on they are identical. b12science.com/B12Science/D...
No, cyanocobalamin is not at all toxic. One injection of 1000 mcg can produce as much cyanide as you'd get from seven apple seeds - b12science.com/B12Science/D...
Methylcobalamin is available in the USA because so many people believe the hype.
2. There is no reliable test for Pernicious Anaemia.
Doctors like the test for antibodies to Intrinsic Factor (the protein needed to absorb B12 from the gut). But 50% of those with PA test negative.
You can diagnose it by elimination (if you're not vegan, or nearly vegetarian; if you do not take metformin or PPIs; if you do not abuse nitrous oxide; if you do not have a fish tapeworm; if you havent had surgery to your digestive system; - then you probably have PA).
Or you can tick items off this list - low serum B12; symptoms of a B12 deficiency; gastric atrophy restricted to the corpus and fundus; intestinal metaplasia in the stomach; macrocytic anaemia; hypergastrinaemia. I think any four of those should be enough to give a diagnosis of PA. Many doctors would disagree.
3. If you have PA then you cannot absorb B12 from the gut.
Martyn's other book - What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency - is more recent and, IMNSHO, much better.
Tell your GP that he is an idiot. Your blood levels will be sky high 4 weeks after injections. No, don;t tell them they're an idiot, just say to the doc - "Why do you want to treat numbers, rather than symptoms".
I tried Methycobalamin for several months( in U.K.) and did not find it any better than Hydroxocobalamin. Yes you can get Methycobalamin in the USA . I suggest that you post again mentioning obtaining it in USA in the heading , which will be more easily noticed by members in USA .
I would use caution when trying methylcobalamin. I tried it twice and had a very bad reaction to it. Each time after I used it I felt incredibly anxious, depressed and for some reason itchy all over. I was also unable to sleep that night. Fortunately, the side effects seemed to go away within a day or so. I'll never use it again. I've been using cynanocobalamin for 3 years and it works great for me.
I cancel my question after reading the articles that have been suggested by birder. Thanks to you all that have responded to my pleas for help, I feel somewhat girded for the confrontation at 3 pm.
Just for interest, I don't know exactly when the UK began using hydroxocobalamin, but when I started my nurse training in 1980, hydroxocobalamin was what patients were prescribed .
A few days ago, I spoke to the pharmacist about the availability of hydroxicobalamin here and she said that it was not available. The British use and application of a loading dose and much less frequent injections after that makes a lot of sense to me. However, now that I have read all these entries and more, that is a issue that I will not be pursuing. I just need for the G P to leave things alone, let me have the weekly dose of cyanocobalimin continued ,until I speak to the specialist, the neurologist in May.Thank you!
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New to all of this Pernicious Anemia Confused about physical response?
Can anyone tell me how to manage pernicious anemia as my eyes are failing and my GP will not help.
