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Pernicious Anaemia Society

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summersmigelski85 profile image

Hello everyone! I am 32 and I have been diagnosed with a b12 deficiency. We are in the process of trying to figure out why I have this. I do have to take injections every two weeks just to feel good. I am looking for people tp talk to that struggle with this deficiency. No one else can understand what you go through and why I describe certain problems the way I do. I get looked at like I'm crazy at times but it's real. Some of my biggest issues is that I get that hot cold feeling in my feet, my hands feet and bottom lip and chin go numb on a regular basis, I get dizzy spells just about every day. My levels are staying around 500 now that I'm doing the shots every two weeks, does anyone else have any effects even though their numbers are Good? Thanks!

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summersmigelski85
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Gambit62 profile image
Gambit62Administrator

after loading shots serum B12 levels are not a good guide to whether you have enough B12 - you really need to go by symptoms. Normal range doesn't apply after loading doses. My levels are permanently over 2000 (ie over the measurable range) and there are others on this forum are in the same boat if we are going to feel well.

summersmigelski85 profile image
summersmigelski85 in reply toGambit62

Interesting.. when I take my shots for the first day after I feel like it's to much, I feel lightheaded and nauseous just for that day or two. Have you heard of that or had that problem yourself?

Gambit62 profile image
Gambit62Administrator in reply tosummersmigelski85

not a problem for me but not unique for people to say that they need a day or two to recover after a B12 shot - not sure if it is something that decreases over time.

clivealive profile image
clivealiveForum Support

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 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.

Women with a history of infertility or multiple miscarriages.

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

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.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I'm not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for over 45 years and I wish you well.

Sleepybunny profile image
Sleepybunny

Hi,

"We are in the process of trying to figure out why I have this"

Risk factors for B12 deficiency and PA (Pernicious Anaemia).

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

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

PAS members can access details of PAS support groups. There are several in UK, one in Australia and one in USA.

pernicious-anaemia-society....

If you're in USA, "B12 Awareness" website may be of interest.

b12awareness.org/

I am not medically trained, just someone who has struggled to get a diagnosis.

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