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Pernicious Anaemia Society
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Acceptable Rise in B-12 Levels?

Good Day all. I am writing from Toronto, Canada. I was diagnosed with B-12 Deficiency on February 23rd. Levels were tested at 150. My issues began in early January with a back injury and progressed to pain in other areas. Oddly, it was my physical therapist that suggested B-12 as it was not on my GP's radar. I was prescribed monthly injections of 1000 MCG Cyanocobalamin and daily sublingual 1000 MCG. Levels were tested again on April 10 and came in at 515. I thought they would be higher as my last jab was on/about March 25th and I never miss a sublingual.

My symptoms have progressed to Neurological with pins and needles in hands and feet, burning feet, anxiety/depression, tinnitus, etc., even with this increase in B-12 levels. Fortunately in Canada I can go to a naturopathic doctor and get as many B-12 Shots as I want for a relatively low cost.

A board blood work up (they took 12 vials) showed nearly everything within normal with the exception of Vitamin D which came in at 56 (reference range 75 - 200).

Comments appreciated!

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your D is low and you do need to correct that - symptoms overlap with B12 deficiency

B12 levels will be astronomic after a shot and then fall over time - mostly removed by your kidneys. cyano may be retained for 1 month on average but that is an average - some people get rid of it much quicker and others much slower - and it looks like you are one of the ones that gets rid of it quicker.

Oral B12 can be effective at keeping levels up but it doesn't sound as if it is going to work in your case - meaning that you need more frequent shots - keep a diary of your symptoms and monitor when they return to decide how frequently you need shots.

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Thank you Gambit62. I am also waiting for results to come back on my Iron levels. I asked for my folate levels to be checked (thank you clivealive) but the doctor refused as in his opinion this is "very rare".

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If Canada is like the US and fortifies food with folic acid then it is unlikely.

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Hi elvistoronto1 was your Folate level tested?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Replacing B12 will lead to a huge increase in the production of blood cells and platelets, (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for 46 years on monthly cyanocobamalin 1mg injections.

I wish you well

.

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Hi clivealive. My folate was not tested. That said, I did have a Complete Blood Count (CBC) that showed White Blood cells, Red Blood Cells and platelet levels are all normal.

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Unless you have an absorption problem rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk. It may be that some brand named breakfast cereals in Canada are also fortified with folic acid.

Personally on the advice of an haematologist in the 1970s I have taken 1 – Folic Acid 400μg

and 1 – Iron Ferrous Fumarate 210mg tablet every day for more years than I can remember.

Do you know why you became B12 deficient?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different

.

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Hey Clive. No they have not determined why I am deficient (yet). However, I have never been a big eater and have always been very thin so I think there may be an ingrained opinion that it is dietary. I am waiting to see my GP with results of latest B-12 levels to discuss testing Intrinsic Factor. I wish I could tell you our doctors here were a "cut above" but unfortunately that is not the case. My family doctor retired a few months back and was replaced by a young, new grad. When I asked about testing for IF, MMA, Homocystene, etc. she looked at me like I had 3 heads!

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Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Can you "see yourself" in any of the above people?

Suggest your "new grad" looks at the Sally Pacholock video one evening.

It's nearly my bedtime so I'll bid you goodnight in the hope that you get the treatment you need - I was "threatened" with having to ear raw liver three times a day when eventually I got the diagnosis of P.A. 13 years after gastric surgery to remove tho thirds of my stomach but I'm still "clivealive" and over 75 :)

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Thanks Clive. I've watched it myself and it's an eye opener. Not sure my doctor would be amenable to viewing it. They always think they know best.

Sleep well.

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Hi,

Some B12 links/books that may be of use.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website (some info may be UK specific)

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

Stichting Tekort

Dutch B12 website, has some English language articles.

stichtingb12tekort.nl/weten...

More b12 info in pinned posts on this forum.

"They have not determined why I am deficient (yet)"

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you had tests/investigations for

1) Pernicious Anaemia?

2) Coeliac disease (sometimes spelt Celiac)?

3) H Pylori infection?

4) Parasite infection eg Fish tapeworm?

There are other conditions that can influence b12 levels besides these.

I am not medically trained.

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