Hope you can help me, posting for my dad

This is my first post. My dad has been having memory problems and a host of other symptoms which, to me, point to B12 deficiency.

He has tinnitus, diarhea, lack of appetite and weight loss, tiredness, memory problems, cognitive decline.

He has recently had a lot of tests including CT scan and a Vitamin B12 test (which apparently was in 'normal range' and cancer ruled out. They are now beginning investigations for dementia.

I feel that B12 deficiency is the problem and am at standstill with trying to find help for him. I have read that a ridiculously high proportion of people with Alzheimers actually had a B12 deficiency.

I don't know where to turn.

I know this is a PA group but I know you are also well versed on this.

Which test is it we buy from 23andme to test for Vit B12 deficiency? Would anyone be able to help me interpret the results?

Please help.

7 Replies

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  • Hi skyrocket sorry to read about your Dad - do you know what the "normal" B12 test reading was. If possible please post the figures on here and also check whether his Folate was tested too.

    The symptoms you describe are similar to those of B12 Deficiency and there are many many reasons for having it per the list below. Can you "see" your Dad among them?

    Who’s at greatest risk for B12 Deficiency?

    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.

    You asked at the end "Which test is it we buy from 23andme to test for Vit B12 deficiency? Would anyone be able to help me interpret the results?" I'm not sure what you mean as you say your Dad has already been tested.

  • Welcome to the site Skyrocket.

    The first thing is for your dad to ask for a print out of his latest blood tests, which he is entitled to have, as what many GPs consider normal results are not normal at all, and deficiencies begin to appear in the cerebral spinal fluid below 550.

    In any case, his doctor should be made aware that these are serious neurological symptoms, that need to be treated urgently and adequately as per BCSH/BNF guidelines in the pinned posts on the right hand side of this site:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement."

    However, few GPs understand the full implications of PA/ B12 deficiency, neither are they aware that hydrochloric acid reduces with age, making it a very likely diagnosis, so it would be a good idea to accompany your dad to remind him of health history, and take along the list of symptoms and information, in case needed. Without wishing to alarm, the longer he is left untreated, the longer it will take to recover and greater the risk of permanent damage.

    To start with, here are some helpful sites you may not have seen:

    b12deficiency.info/what-to-...

    cmim.org/pdf2014/funcion.ph...

    The above latest UK research document has a useful summary which emphasises that there is no reliable test, so treatment of all neurological symptoms without delay is paramount. There's also important information re. blood tests - bottom of page 4 under 'how is response to treatment assessed'.

    I feel particularly for you in your isolation with this dilemma Skrocket, as my family having battled for gentle and mild sister's correct treatment after misdiagnoses of ME for years, then dementia, are all devastated that she has been sectioned after her injections were stopped. Neither her surgery or psychiatrist will believe the resultant psychosis, paranoia and anger are symptoms of B12 deficiency......

    stichtingb12tekort.nl/weten...

    "Conclusion: Apparently this knowledge (and all the aforementioned) was lost over the years, as these days many physicians are not aware of the fact that neurologic and neuropsychiatric symptoms of a B12 deficiency occur without anemia and/or macrocytosis, and that a deficiency can have serious consequences before anemia ever develop. A vitamin B12 deficiency can lead to serious neurological, cognitive and psychiatric symptoms. Delaying treatment can have devastating effects. Physicians should be aware that neurological damage can occur before anemia develops, and consider a vitamin B12 deficiency when neurological and/or neuropsychiatric symptoms are present, with or without the presence of anemia. The cost of testing for a possible B12 deficiency and treating the deficiency when present, are low. The benefits of an early diagnosis are potentially enormous, and not just financially."

    In hindsight, I really wish now that we'd avoided the stress of a hopeless battle and gone ahead straight away with buying B12 from Germany for self injection, plus Jarrows Methylcobalamin 5000 mcg sublingual supplementation.....

    There are people here who have happier outcomes, and lots who self inject successfully, and would be happy to advise.

    Very best wishes for a good outcome for you and your dad.

  • could you actually ask and get a copy of the blood tests that were done and came back as normal for B12 - it may be that the test was grey area in which case it would save you forking out again for another serum B12 test. If you get hold of the test results and post with range then people will be able to help you interpret.

    Unfortunately there isn't a good test for B12 deficiency - MMA and homocysteine are tests that can help clarify if B12 is in grey area but can be quite pricey. There is also the active B12 test but although that is looking at just the active forms of B12 rather than all forms of B12 it doesn't give any information about what is happening at the cell level (which MMA and homocysteine do .... but they can also be elevated for other reasons).

    Just to be precise - I think it is miscategorisation as demential rather than alzheimers as proper diagnosis of alzheimers involves looking for specific patterns of brain damage associated with a specific type of dementia.

    Unfortunately the symptoms of B12 deficiency overlap with many other conditions which does make diagnosis difficult.

  • Hi Skyrocket. Hello and welcome.

    I'm really sorry that your dad is having health problems and can well understand how frightening a potential diagnosis of Alzheimer's is for you both. And you're quite right to want to investigate the possibility of B12 deficiency.

    So, doctors often say that blood results are normal when they are not. Bumping along the bottom of the reference range is not good enough for some people, especially where B12 is concerned.

    The first thing you could do is get copies of all your dad's recent blood results and post them here, together with the reference ranges (the figures that follow the actual result). Your dad is quite within his rights to ask for these results - the surgery receptionist will usually print them out for you.

    People here will be able to help you interpret the results, identify if there is, in fact, a B12 deficiency, and ensure that the correct tests have been done (for instance, if the GP suspected B12 deficiency, he should also have tested folate levels). B12 and folate work together so if folate levels are low then the body cannot utilise B12 properly - no matter how much you do or do not have.

    The 23andme test tests for gene variations and will not tell you if a B12 deficiency is present (though it can identify some of the gene variations that 'interrupt' the processes by which B12 and folate are processed in the body - though these are quite rare).

    There are, however, other tests that can help identify B12 deficiency (MMA and homocysteine): GP's can order these tests but sadly, many seem not to have heard of them. If we can see what blood tests your GP has done and help you interpret them, we could then advise about what other tests you could approach your GP for, including perhaps MMA and homocysteine.

    We can also help with advice about ways to get your GP to provide treatment with B12 injections, if this is necessary.

    It would be a good idea if you had a read of the PAS pinned posts to the right of this page when you log on. They contain a symptom checklist (you could check your dad's symptoms against this) and diagnostics / treatment protocols, together with all relevant guidelines that GP's are supposed to work to. Reading these will perhaps give you a good idea about whether your dad is likely to be affected by B12 deficiency and pernicious anaemia.

    GP's are often ill-informed about B12 deficency and pernicious anaemia so many people here end up becoming their own expert so that they can help their GP's to help them - and the pinned posts are a very good place to start.

    B12 deficency is a very complex condition but don't worry, there are people here who can help you work through this so that you can get the best treatment for your dad.

    It's worth mentioning that if there any autoimmune conditions in the family, then the likelihood of pernicious anaemia (another autoimmune condition) is increased.

    So, we'll look out for the results - if you put them up in a new post, then more people will see them (since older posts sink down the page).

    Not knowing where to turn is something we recognise here 'cause we've all been there too...so please try not to worry too much...lots of knowledgable folk here who will pop along and help you as much as possible.

    Take care both 👍

  • Here is an American link on dementia research that recommends B12 def. and other reversible causes should be investigated before a diagnosis of dementia :

    ncbi.nlm.nih.gov/pmc/articl... :

    *. ncbi.nlm.nih.gov/pubmed/114...

    An interesting article from 'Pulse' :

    thecommissioningreview.com/...

    " Similarly for patients with a diagnosis of dementia after 1 April, make sure that they have bloods including B12 and folate soon after diagnosis. None of these have been confirmed at the time of writing but could allow you to get ahead of the game for the coming year with relatively little effort."

    According to this, my sister should have been screened much earlier for B12 and other reversible causes before wrongly diagnosing Altzheimers, referring her to memory clinic and ME clinic, and only prescribing antipsychotics for voices in her ear, completely disregarding an inability to walk and countless other obvious and serious neurological symptoms of B12def,

    Call me cynical but you can see that a surgery would be paid a lot more for diagnosing Mental Health or Altzheimers, compared to, say, hypothyroidism and nothing for B12 ! It is the only reason I have to explain the sheer ignorance, obstruction and smirking arrogant refusal to recognise they could be wrong. As you've mentioned Skyrocket, I am absolutely certain there are thousands of wrongly diagnosed elderly people with B12 deficiency left to deteriorate. There is something very, very wrong....

    Sorry about this rant but, after our family's experience, I am very determined others will know what they are up against and be well prepared to fight it.....

  • Alongside B12D also check your Dad is not on a Statin, Statins have caused 2 family members of mine to have memory problems/dementia and another friend's Mum was diagnosed with 'Alzheimers', once off the statins all got their memorys back again.

    Statins have many different prescription names.

  • The diarrhea should be investigated... a celiac test, for a start.

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