B12

[laura726]

I have been diagnosed with a severe B12 difficency. I have just had my last booster jab but am being refered to an endocriniologist because my gp has ruled out pernicious anemia as the cause as my blood count is fine. Has anyone else been through the same? What can I expect?

[clivealive Forum Support]

Hi laura726

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.

Women with a history of infertility or multiple miscarriages.

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

Have you been tested for Intrinsic Factor Antibodies (IFA) so your doctor could "rule out or in" Pernicious Anaemia? Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

Has your Folate level been checked?

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

I wish you well.

[Gambit62 Administrator]

well, I think the reality is that your GP isn't aware of the limitations of the test he did for PA so probably wasting time referring you to an endo (which is strange referral for a B12 absorption problem - sure it wasn't a gastro or a haemo?)

IFA test is quite specific (low probability of a false positive) but spectacularly lacking in sensitivity (gives false negatives 40-60% of the time - varies a bit with the exact test method, hence the range). So positive is good for saying that you have PA - but negative is a long way from ruling it out.

The limitations of the test are such that the BCSH Guidelines for diagnosis and treatment of cobalamin and folate deficiencies refer to IFAB-negative PA.

Assuming your GP is UK based they can access the standards through the BNF but they can also be accessed here (may not work if you are outside the UK)

onlinelibrary.wiley.com/doi...

[Mkatherine]

I had the same problem with me GP. I told him that I could not distinguish the difference in touching a satin fabric and a corduroy fabric. He laughed, and said I would have to wait for more symptoms to develop. I changed doctors, and by that time I could not tell when my feet hit the ground, she ignored that until I had to lie to her to get her attention—- I told her that I stepped on a piece of broken glass but didn’t feel it or notice until I saw blood on the floor. Of course I had made that up but it did finally get her attention. She sent me to a neurologist who took me seriously, did an EMG test, and said I had dorsal and lateral horn atrophy of my spinal cord. Since then, doctors take me seriously, but I find they know very little about it. I am on a combination of gabapentin and cymbalta for the peripheral neuropathy and pain in feet. I am also prescribed lidocaine patches to help with the pain. When it is bad, I take 3000 mg of l-arginine, which helps to dilate tiny capillaries to help with the blood flow. My biggest complaint is fatigue, and occasional air hunger.

I was referred to a pulmonologist who did a CT scan to rule out other causes, such as cancer or bronchiectasis, and another test where they measure diffusion of oxygen into the blood. Normal values are 125-60. Below 60 requires oxygen therapy. My level was borderline at 63 so I can still feel the troublesome symptoms. So the occasional fatigue and air hunger is just something I need to live with, basically and it will be a part of my Life. I will still try to walk at least 30 minutes a day— housekeeping and gardening doesn’t count,

Alert!!! I have had a new, recent life threatening event that everyone on this site needs to be aware that can happen to them. I had an upper gastroscope performed, and afterward I was told that when I was given propofol for sedation, ,I stopped breathing and the anesthetist didn’t notice until I was turning blue and cyanotic. He had to use an ambu bag and %100 oxygen to ventilate me. The doctor did do a quick gastroscope, and when the anesthetist was waking me up, I stopped breathing again and the anesthetist had to ventilate me again. This can happen to anybody with PA.

Please tell your anesthesia providers to give you 100% oxygen for a few minutes before your are given anesthesia. This way your lungs and body will have more of a safety reserve of oxygen in your body. Most providers think that pernicious anemia is like regular anemia and can be treated the same way. I say this from experience because I worked as a certified nurse anesthetist in the US for 30 years, and loved my job, but had to quit because of the peripheral neuropathy and numbness in my fingers. I don’t know if British anesthetists are as cavalier as the ones that I worked with, but you need to make them aware that you cannot have N2O (nitrous oxide) and that you need to be fully oxygenated prior to the induction of anesthesia, and monitored very closely afterwards, and when given drugs, they need to be titrated in very gradually.

[Ryaan]

Good job to get Dr’s attention!.....because most of them think everything is a joke.

I don’t know much but I knw Low B12, Folate, Iron and Vitamin D can leave you gasping for air so I hope your Dr has at least tested these.

Wish you well and hope things work out for the best.