Help!

[KazzyK]

I wonder if I could have any thoughts from those that have been managing long term B12 deficiency? I had been suffering extreme tiredness/hair breakage/painful heels/muscle fatigue for last few years and always put it down menopause and being on my feet all day, then one day one of my clients suggested having my b12 tested. At the same time my daughter of 23 was under a ENT specialist for repeated vestibular migraine along with tingling fingers/extreme tiredness and he also requested a b12 test. Our tests came out 109 and 65 respectively, we also had intrinsic and auto immune tested which have come back ok. We are not vegan and eat a healthy balanced diet. We were both put on the standard 6 injection loading course with a follow up blood test after 3 months, during that time I took a supplement of 2 high strength b12 tablets daily however after my recent bloods I have come back at 150, I am still waiting for my daughters results. I feel that with the current gp surgery protocols it will take forever to get us both up to ‘normal limits’ for our symptoms to get better so have thought of the possibility of self administering? Also I wondered if anyone had any thoughts on genetic connection? Sorry for all the waffle ☺️

[clivealive Forum Support]

Hi KazzyK 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), Pancreatic insufficiency, 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.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

You can obviously strike through line one but do you see you and/or your daughter among any of the other people?

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you both well.

[Gambit62 Administrator]

a) a negative on intrinsic factor antibodies - the autoimmune test - is a long way from showing that your problem isn't auto-immune - it is not a very sensitive test so gives false negatives 40-60% of the time. On the other hand the test is very specific so it rarely gives a false positive.

b) after an injection your B12 levels will be off the scale. They will then fall over time. How quickly this happens varies significantly from person to person. So, not a case of the injections not having raised your levels but a case of your levels falling to borderline of deficiency since you had the injections.

If you didn't have an absorption problem then your body would be able to store some of the excess in your liver and use that to maintain your levels where you personally need them. However, if you have an absorption problem the process for releasing B!2 from the liver becomes very inefficient/totally ineffective so your levels don't even out they just plateau.

c) whilst high dose oral can be effective at maintaining B12 levels they don't work for everyone and you are obviously one of the people that they don't help.

d) if your symptoms are returning that is when you need to top up your B12

[fbirder]

Ask to be treated according to this protocol - hey.nhs.uk/wp/wp-content/up...

That would mean you both being started on a course on injections. If your symptoms improve you have injections for life. No other testing is required.