Undetectable

Hi. I am new here and have just been diagnosed with B12 deficiency. I am 67 years old and my mother, who was from Germany had anemia for much of her life. The lab told my doctor my B12 was undetectable. Does anyone know what that means? Also, what is the next step in determining the cause of my deficiency? Thanks in advance for any information that will help me digest this new diagnose.

[fbirder]

The way they measure B12 has a lower limit. Your B12 is below that limit. That is the result I got when I was first diagnosed.

The first step is to get proper treatment. That depends on the cause.

Are you vegetarian/vegan? If so, then there is a good chance that is what has caused your deficiency and that your treatment would be fairly simple. I would ask for a course on 6 injections over two weeks - just to get your levels up to where they should be - followed by 50 mcg tablets once a day.

If you aren't vege/vegan then you almost certainly have an absorption problem.

It may be caused by drugs (PPIs for high stomach acid, or metformin for diabetes). In which case stopping the drugs might help, but you'd be better off with injections for life.

Or you may have the autoimmune disease Pernicious Anaemia. In which case you definitely need injections for life. The problem is that it's difficult to prove you have PA (the standard test gets it wrong in half of people that do have it).

Regardless of the cause of an absorption problem you need injections according to the British National Formulary - bnf.nice.org.uk/drug/hydrox...

If you have neurological symptoms (pins and needles, balance problems, memory lapses, etc.) then you need 1 mg of hydroxocobalamin, once daily on alternate days until no further improvement, then 1 mg every 2 months. If you do not then it's 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.

Sleepybunny will be along soon with loads more info.

[Hidden in reply to fbirder]

Thank you so much for all the information you gave me. I am not a vegan and I am not diabetic so I must have an absorption problem. I do have a positive ANA so I do have some autoimmune activity going on, but they have not figured out what my autoimmune antibodies are attacking. I have seen a rheumatologist at Mayo in Rochester, MN and she ordered tons of tests and is going to try and figure my autoimmune stuff out. I do have neurological symptoms, I have numbness and tingling in hands and feet, weak muscles in my legs, with trouble walking very far without a walker. I also have trouble finding words when talking with friends, and I have to admit that over the last month, these symptoms plus the overwhelming exhaustion, I have found myself wondering if I have a life that, if I had a choice, I would say was not worth living, which is so not me! I have started treatment with shots, one a weekX 4 and then once a month, indefinitely. The shots have given me much hope that I can have a much better quality of life, but I would like to find out what is causing my inability to absorb B12 and my doctor is working on that. I am learning so much from reading the posts and answers here, as this is uncharted territory for me. I am so glad I joined all of you, because I know you all truely understand the frustrations of a chonic illness and the support is wonderful!

[fbirder in reply to Hidden]

Ah, didn't realise you were in America. That will change the treatment protocol. For a start they use cyanocobalamin over there. Just as good as hydroxocobalamin, but tends to need more frequent maintenance doses.

Instead of a rheumatologist, I would be wanting to see a neurologist (to determine if your tingling, et. is caused by B12) and a gastroenterologist (as Pernicious Anaemia is really a problem with the stomach).

[Hidden in reply to fbirder]

I am seeing a gastroenterologist in January, as that is as soon as I can get in. I don't feel my shots are lasting, as my symptoms return after 3-4 days. I am getting a shot every Monday in November and then once a month, indefinitely. Do you every feel like things get back to some form of normal for you? Or can symptoms return on some days? I have only had 2 shots so far, but I am not sleeping well, I have become restless at night. Is that common?

[Sleepybunny]

Hi,

I've written a very detailed reply in link below to another thread. It has links to B12 documents, book titles, b12 websites etc

healthunlocked.com/pasoc/po...

Some of the info is specific to UK but hopefully there is still something in it that would be of interest to you.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Awareness

b12awareness.org/

Films about B12 deficiency

b12deficiency.info/films/

[Hidden in reply to Sleepybunny]

Thank you Sleepybunny! You have given me a wealth of information. I am struggling with symptoms coming and going and feeling restless at night. I hope at some point I will learn how to deal with this better. I suppose my body is in shock, going from undetectable B12 to actually having some. Is it normal, at certain intervals to have you B12 levels checked?

[Sleepybunny in reply to Hidden]

Hi,

UK guidelines suggest that retesting B12 levels after treatment has started is irrelevant.

Some UK forum members have had their NHS B12 jabs stopped when GPs have retested their B12 and results have come back high.

Articles below are English language articles from Dutch B12 website.

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

Good luck with getting the treatment you need.

There are several different forms of B12 and some on forum report that they respond better to a certain form of B12.

I think in US cyanocobalamin is used more often. There is also methylcobalamin, hydroxycobalamin and adenosylcobalamin.

Might be worth finding out if there are regional guidelines on treatment for B12 deficiency in your part of US. I'm not aware of any national guidelines in US.

Have you heard of Sally Pacholok, she's a campaigner for better recognition and treatment of B12 deficiency in US.

There are Facebook groups for B12 deficiency; one is mentioned in link below.

b12deficiency.info/very-use...

Not sure what they are like though.

[Hidden in reply to Sleepybunny]

You have been great, a fountain of information, which is so helpful. Have you had this deficiency along time? I will look into Sally Pacholok and the Facebook group. You are invaluable to us newbies.

[Sleepybunny in reply to Hidden]

Hi,

Yes , suspect I've had symptoms for many years at least 20 or though in the early days I put a lot of it down to being a busy mum with kids.

I feel I lost at least 15 years of life, fought hard to get treatment but apart from one set of loading jabs could not get NHS to treat me until recent years.

Got to the point that life was almost unbearable and realised the only one who was going t o find out what was wrong with me... was me.

I became a medical detective (GPs don't like this in general). Researched every symptom, got hold of past test results etc and figured out it was one of about three conditions of which b12 deficiency was most likely. Got tests to exclude other possibilities.

Had terrible experiences with doctors, was told it was depression, hypochondria, psychosomatic symptoms, ME/CFS/Fibro etc, got shouted/snapped at more than once. Kept saying that there was a physical cause to everything I was suffering but no-one was really listening.

Things were complicated because despite multiple typical symptoms of b12 deficiency ( over 40 different symptoms affecting multiple body systems with many neurological symptoms) my results for B12 were, apart from once, within normal range and Intrinsic Factor Antibody test (for PA) was negative.

Found out that none of the tests for B12 deficiency and PA tests are infallible eg serum B12, Active B12 (HoloTC), MMA, Homocysteine. It is possible to have PA even if IFA and PCA (parietal cell antibody tests) are negative.

The only way I could come to terms with the way I had been treated and the lack of kindness and support was to try to ensure it didn't happen to other people.

For a long time I had to treat myself. I never wanted to, I wanted the doctors to treat me.

Several years later I'm the best I've ever been but suspect I have some permanent damage; luckily I've avoided SACD subacute combined degeneration of the spinal cord and dementia.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

[Hidden in reply to Sleepybunny]

You are a very strong woman. I am so sorry that you had to endure the difficulties with doctors, who by the way, do not know everything, unfortunately these difficulties happen way too frequently. I too hit bottom before my diagnosis and treatment. I told my husband one night, " This is not living." I started reading everything I could, and it was me who ask my doctor to please check my B12, which is giving me hope of a better quality of life, after my doctor had virtually ignored my complaints of symptom, and I had them all, for almost 2 years. Best of luck to you and enjoy your hard fought for energy. You deserve it!