Do I ask for more?: Hello Everyone! I... - Pernicious Anaemi...

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Do I ask for more?

Pepless profile image
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Hello Everyone! I was just diagnosed with B12 deficiency (227 was my score). I have been taking a Bioactive liquid Methylcobalamin-Adenosylcobalamin supplement for 12 days now: 2500mcg for 7 days & 5000mcg for 5 days. I do not feel any better at this point. My Dr. did not test for intrinsic factor and did not speak about P/A. Shouldn’t I be feeling some benefit from supplements by now? Should I ask to be tested for P/A? My Dr. wants to recheck B12 levels in 6 mos, but I’m not comfortable waiting that long. I’d appreciate any feedback.

Thank you 🌺

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Pepless
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wedgewood profile image
wedgewood

If the liquid B12 oral supplement is having no effect ,on your symptoms , then it sounds like an absorbtion problem . Yes it would be good idea to be tested for PA ( Intrinsic Factor Antibodies ) BUT , it’s a VERY unreliable test . You can test negative and still have PA . If you are taking B12 supplements you will have a high blood serum B12 reading when your doctor retests , but this only shows what’s in your blood , not if any is getting into your cells .Once supplementation starts, testing for B12 is pointless . Symptoms must be treated , not test results . I would ask for B12 injections which is really the only way for PA patients to absorb B12 . It’s usual In the U.K. to have loading doses ( 6 over 2 weeks) then once every 3months if no neurological symptoms . Every 2 months if there are . This is insufficient for some PA patients who then have to self-inject. That’s another story! I’ve not heard of the supplement you are taking . Are you not in the U.K. where this forum is based ? Best wishes to you .

Pepless profile image
Pepless in reply towedgewood

Spoke to my Drs office today and they want me to continue supplements for 3 mos and then test for PA. It has been strongly suggested I do injections, but I do do not want to be injected with Cyanocobalamin; which is what is used in the U.S. where I live. I feel better about this plan but still worried about all of this. If tests are unreliable, how do you ever know what’s going on? Thank you for time and advice.

I appreciate it.

wedgewood profile image
wedgewood in reply toPepless

You can obtain Methylcobalamin for injection in the USA. I obtained it from there myself when I was led to believe(falsely ) that it was superior to the cobalamin that is used here in the U.K. , Namely Hydroxocobalamin. If you are worried about the “Cyno” element , there’s no need . It’s minicsule.Like as much cyanide as in an apple pip. . One of our forum advisors, Clivealive , has used Cynocobalamin injections for 50 years . The I.F.A. test —Intrinsic Factor Antibody test is reliable if you test positive . Then you do have P.A. —- BUT if you test negative , you can still have P.A. If you are not benefiting from oral supplements , you can assume you have an absorbtion problem . I assume that you are not vegan or strictly vegetarian , are not taking any medications that interfere with B12 absorbtion like P.P.I.s , certain diabetes medications . etc. . Whatever , I do wish you the very best in solving your problem . I’ve been there myself , and didn’t find this site for ages whilst I was struggling with doctors here who don’t have much knowledge of P.A. . I can only suggest that you try Methylcobalamin injections if you do not want Cynocobalamin. I don’t think you can get Hydroxocobalamin in the U.S.A. You can obtain Hydroxocobalamin ampoules from German online pharmacies . Some will export to U.S.A .

ButlerNM profile image
ButlerNM

It sure how long you’ve had symptoms but I went undiagnosed for about 4 years. Demand an intrinsic factor test. If you have PA taking a pill is not going to help, you need it injected into muscle. Good luck!

Pepless profile image
Pepless in reply toButlerNM

Found out today my Dr wants me to keep up with supplements and we will test for PA in 3 mos. I feel better with that plan ...

Appreciate your reply and input. This is all pretty confusing!

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