Learnt I'm Deficient today

Hi all, I have just found out today that I am B12 and folate deficient and looking on this and other web-sites it answers sooooo many questions I have had about my health for quite some time.

My doctor is sending me for a further blood test on Friday with regards to today's findings but I didn't think to ask why - can anyone guess what it will be for? He hasn't yet suggested any treatment....

I didn't realise just how debilitating being deficient in one little vitamin could be and wish you all very good luck and good health to come...

Many thanks

Jackie

8 Replies

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  • Hi Jackie,

    He may be testing for antibodies for the parietal cells or intrinsic factor to see if he can diagnose pernicious anemia. Low b12 can be caused by other things, such as diet if you are vegetarian or vegan, or if you have problems absorbing due to other things such as no stomach acid. There are other tests such as MMA and homocystene but I don't think they do them routinely. I could be wrong! Other members on this forum no much more.

    You may like to look at the information on the pernicious anemia society website as well as b12d.org and b12awareness.org for lots more information. Can you post your results?

    And yes, b12 deficiency is a serious condition, not that doctors will acknowledge that! The longer you are left untreated the worse it gets. I only found out I was deficient 3 months ago, but my old medical records show I was deficient 13 years ago! It explains why I've suffered for so long and now have permanent neurological damage. I inject weeklu now and have improved significantly. I feel almost normal, if that's a good thing! :-)

  • Hi,

    A few links that might be useful

    pernicious-anaemia-society.... 01656 769 717

    martynhooper.com/

    b12deficiency.info/

    B12 books

    "Could It Be b12" by Sally Pacholok and JJ. Stuart. A very comprehensive book about B12 deficiency with lots of case histories.

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS (Pernicious Anaemia Society). The book is up to date with recent UK Guidelines.

    UK B12 documents

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    Google "BCSH Cobalamin and Folate Guidelines"

    I gave a copy of the BCSH Cobalamin and Folate Guidelines to GPs along with a copy of Martyn Hooper's book.

    UK B12 treatment

    BCSH Cobalamin Guidelines page 8, I also found page 29 useful.

    patient.info/doctor/pernici...

    See Management section in above link.

    Symptoms

    Do you have neuro symptoms? UK treatment for someone with B12 deficiency and neuro symptoms includes extended loading injections and then maintenance injections at shorter intervals. See Management section in link mentioned above.

    pernicious-anaemia-society....

    See PAS Symptoms Checklist

    b12deficiency.info/signs-an...

    Other links I found useful.

    b12deficiency.info/signs-an...

    patient.info/doctor/folate-...

    labtestsonline.org.uk/under...

    Test results

    One of the most useful things I learnt from all my efforts to find out what is wrong is to always get copies of blood test results. In relation to B12, i look particularly at B12, folate , FBC (full blood count) and ferritin. Some people can access blood results online

    .

    Have you had tests for thyroid conditions? Coeliac disease? Some of the symptoms for these conditions may overlap with those for B12 deficiency.

    thyroiduk.org.uk/tuk/

    coeliac.org.uk/coeliac-dise...

  • Most likely IFA (intrinsic factor antibodies) - though as the test is only about 50% accurate I personally think it is a waste of time. Unless they can demonstrate that the deficiency is obviously caused by your diet (or a tape-worm in your intestines - rare in the UK but more common in iceland) then the treatment is intramuscular injections - should be at least six over 2 weeks and then maintenance shots - which could be as infrequent as once every 3 months and if you feel the symptoms returning before the end of 3 months you won't be alone.

    If you have nuerological symptoms then loading shots should be 3 a week until symptoms stop improving and then maintenance shots every 2 weeks.

    If you also have a folate deficiency then both need to be treated at the same time.

    Hope you have a doctor that doesn't just go by the book and will be flexible enough to give you the treatment you need.

  • Thank you all for coming back to me - I really appreciate it.

    LtAngua52 - good to hear you are improving. I do remember several years ago another doctor at the surgery mentioning something to do with my blood, but he asked me how much I drink - which I believe also makes abnormal blood cells. I did probably drink too much - and probably still do - so maybe he made an assumption - I don't know but I could have had it for several years...

    Sleepybunny - thank you for all the reference material. I think it will take a while to get through it all... I haven't been tested for anything else, but the main reason I went to see my doc was because I have a lump in my throat which is affecting my voice and when I looked on-line as to what it could be it came up with Hypothyroidism - on reading all the symptoms I was adamant I had it as it answered so many questions with regards to how I could feel so awful!! Neuro symptoms - not pins and needles but unexplained pains in my hands and feet on a regular basis. I thought it was mild Psoriatic arthritis as I have psoriasis. Also intercostal nerve issues that are very bad at times, not sure if it is related. I have also had many gastro issues, thinking I was gluten intolerant. Latest being I have worked out that I have a nightshade intolerance and since not eating tomatoes and potatoes I have hardly had any 'episodes' as I would call them. I will see if I can get a copy of my results...

    Gambit62 - I can't see that it is diet related... I always thought I had a good diet, lots of chicken and fish and very rarely processed. Not liking the idea of a tape worm and I'm sure I would be much thinner if that was the case lol... I like to think my doctors are fairly flexible and hope my confidence in them is not misplaced.

    Got an appointment with an ENT consultant next week to see what is up with my throat - lets hope it turns out to be another symptom of the B12 and nothing more serious....

    Thank you again.

  • Poshnickers as mentioned above by Sleepybunny

    On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

    Who’s at greatest risk for B12 Deficiency?

    Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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.

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

    Can you "identify" with any of the above?

  • hi just wondered if you have been tested for vit d deficiency l had pain in both hands and knees and was found to be vit d def the tablets have ttaken the pain away almost completely l also had low ferritin of 6 several times so you could also ask for this to be checked as your blood count can be normal [ mine was 112 range 115-150] but your stores can almost be depleted leaving you feeling quite ill, with b12 of 140 it can all add up to feeling poorly always ask what your results are as normal can often mean just above the lab cut off

  • Underactive thyroid and low B12 have very similar symptoms, and often occur together. They did in my case! When you've got all your blood test results you can post them on here for further comments. We are entitled to ask for copies from our GP, although they may charge a little for printing them out. MariLiz

    Ps My VitD was low too!

  • Hi

    Yes clivealive I can relate to a few of those points mentioned in your post.

    I am back at the doctors on Friday for my 3rd blood test - now sure what for this time, but whilst there I will see if the nurse can print out my current results...

    Many thanks

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