Pernicious Anaemia Society
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B12 level after 18 cyno injections is only 677 pg/ml. Why would this be so?

Hello, im needing help.

I had 1000 mcg of cyno injected on 5/22, 5/30, 6/5, 6/12, 6/16, 6/19, 6/30, 7/5, 7/10. Total of 9 injections. Stopped so i could have testing done 7/27/17 for basically everything.

Importaant results were IFA negative, i know its not reliable. Serum B12 814 pg/ml. This was after only 17 days since last injection. It was concerning compared to other posts i have read on this forum showing levels above 1500 or 2000.

I started injections again, due to still feeling poorly. Those were on 8/2, 8/7, 8/18.

This is when i received test results showing positive for h pylori. I took antibiotic treatment and after antibiotics i also used homepatic helpers of berberine, pumpkin seed oil pills, probiotics, and zinc. Thought/hoped i would start being able to absorb b12 through my gut normally again. Still felt crap so resumed injections, These began 9/13, 9/20, 9/28, 10/2, 10/9, 10/16.

Stopped injections again, thinking/hoping this would increase my level sufficiently, since i have been treated for h pylori. I did start taking iron daily on 10/27/17 as i still felt general fatigue. Seemed to help as i was moving and was able to clean, paint and move without feeling like death. Tested serum b12, 32 days after last injection, on 11/17/17.

B12 677 pg/ml.

The lab lost my h pylori test to verify if it is gone or not so i retook that breath test again on 11/22/17. Of course no results yet.

Why would my b12 level be at 677 pg/ml after 18 injections?

Im super frustrated.

I tried to go get a b12 shot recently but the place was closed Wed afternoon, due to Thanksgiving being the next day. Now i am wondering if i should try to wait another 30 days without an injection to see how much my level drops in 30 more days. But that seems scary as my balance, energy and of course concentration arent great as it is.

Suggestions and medical links greatly appreciated. Gambit62 fbirder Sleepybunny

Special note to clivealive Finally got my folate checked for first time. They dont normally check this in U.S. i guess because our food is fortified. Folate was >24. Range >5.4 ng/ml

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Hello again my heart goes out to you I have severe fatigue all the time I think there might be a Rheumatic component going on going to see a rheumatologist in a week I'm going to try compounded T4 and T3. I've been on synthroid for 15 years so a little apprehensive but I'm hoping it can give me a little bit of energy back

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possible that h pylori not the only thing affecting B12 absorption.

What matters after loading shots isn't so much the levels as what is going on with your symptoms - and this might be the case even if the h pylori infection has been resolved if you have had a reaction to high levels of B12 in your blood to stop it passing in to cells - at some point this reaction should stop but it would depend on where that point is for you .... and if it is auto-immune it might not stop at all .... though it can be treated by keeping B12 levels really high.

It isn't that your levels have only risen to 667pg/mol - after each shot they will be astronomic and then they will fall - quite dramatically to start with and mainly because the excess B12 will be removed by your kidneys. How quickly this happens depends on how efficient your kidneys are - and it can be affected by the reaction to high serum B12 mentioned in the previous paragraph but this is going to be a much more significant effect on B12 levels than the amount you might be using ... though if you have replenished reserves in your liver that could lead to a significant drop.

In terms of articles I have a few on functional B12 deficiency - the drop in levels after injections is in just about any B12 study you want to look at -suggest looking on the ncbi website

ncbi.nlm.nih.gov/pmc/ - try typing in functional B12 deficiency and see what comes up ... or anything to do with treating B12 deficiency if you want to find bits on how B12 levels after shots change over time, eg B12 retention

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H. pylori hinders B12 absorption by causing gastritis and a loss of gastric parietal cells. These produce Intrinsic Factor, a protein needed to carry B12 across the gut wall.

I'm not sure how long after the infection is eradicated you have to wait for the gastritis to be resolved and IF production to get back to normal.

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Hi,

It's possible for people to have more than one cause of b12 deficiency at the same time.

Risk factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

"Importaant results were IFA negative, i know its not reliable"

I wondered if your doctor might be interested in this flowchart which mentions Antibody Negative Pernicious Anaemia. I'm not sure if Antibody Negative PA is recognised In USA.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

I hope you find an answer.

I am not medically trained.

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Hi again KimberinUS when you wrote "It was concerning compared to other posts i have read on this forum showing levels above 1500 or 2000" that could well be the results of patients being treated with hydroxocobamalin as opposed to the cyanocobamalin you are being injected with.

As I understand it (and I'm not medically trained) hydroxo is "supposed" to "last longer" than cyano which is why the regime for cyano is every four weeks instead of twelve weeks for hydroxo. I stand to be corrected on this supposition.

Incidentally I've been on cyano since my diagnosis of P.A. in 1972 and couldn't cope with hydroxo when it was introduced in the 1980s here in the U.K.

It's good that your Folate is at a "healthy" level.

I hope you get the "all clear" on your H pylori and receive the treatment you need.

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Hi Kimberin. Several years ago I had Cyanocobalamin shots and my levels barely went up. My doctor didn't believe that I was taking them so I stopped! This year I have taken Hydroxocobalamin shots and I use Methylcobalamin sublinguals and my levels went up very quickly and dramatically. Every once and Awhile I alternate with Methylcobalamin shots. This seems to work for me. Hope this helps.

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Is hydroxo and methyl prescription? I have cyano

I still have shortness of breath and tingling arms and feet

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I just got my h pylori test results back. I still have h pylori. Going to get different antibiotics for round two of treatment today. Going with the 14 day treatment this time. Trying to be hopefull/positive that i still have a chance of being able to get back to normal if i can kill this bug off

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oh wow! I heard that it could be a hard bug to squash...best to you kimber!

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