New here and desperate for advice on B12 deficiency

Hello

I'm new here and desperately looking for some advice.

My Mum has recently been diagnosed with B12, vitamin D and potassium deficiency although a follow-up blood test indicated that her potassium levels had returned to normal following some dietary changes. The GP sent her to have a B12 injection 3 weeks ago and also prescribed high dose vitamin D tablets which she started taking on 4 days ago but so far there has been no improvement at all. She's been back to the GP but he was very dismissive and basically told her she'd need to wait for another B12 injection in 3 months time and tried to offer her antidepressants, suggesting it was all in her mind. She is low in mood and anxious but that seems to be primarily related to the physical symptoms she is experiencing which all fit with B12 deficiency; very low energy and fatigue, muscle aches and pains, sore tired eyes making it difficult for her open them for long periods of time, constipation, difficulties walking, poor concentration etc. She has significantly impaired vision as a result of a subarachnoid haemorrhage last year (which she was recovering well from until the onset of B12 deficiency) but has said her vision appears to have got worse over the past couple of months which fits with when the rest of the symptoms came on.

This is all completely new to us so I'd be so grateful for any advice you can give here. It's making her life a misery and she's so low in energy she can barely get out of bed let alone leave the house or do anything resembling a normal life. During a follow-up GP appointment last week she asked about having more frequent B12 injections but the GP was very dismissive and said it wasn't necessary as she does not have pernicious anaemia because her B12 levels were 218 and that below 200 is the cut off for PA. We're looking into the possibility of paying privately because she can't continue like this but have no real idea where to find someone with any expertise in this matter. Any advice at all would be gratefully received.

Thanks in advance!

11 Replies

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  • Hi exile are you in the UK?

    How long after the one off B12 injection was your Mum's level tested that came out at 218?

    Do you know what her Folate level was?

    I'm not being cheeky, but how old is your Mum?

    Anyone with both a B12 and vitamin D deficiency is bound not to feel very well and it is so annoying that her doctor appears to be looking at his computer screen instead of his patient.

    I am not a medically trained person but there are others on here who will be able to offer good advice.

  • Thanks so much for taking the time to reply. Yes I'm in the UK.

    The follow up blood tests which came out with a level of 218 were taken a week after the injection. GP didn't mention her folate level at all.

    My Mum is 70 and because she was still recovering from a subarachnoid hemorrhage she was easily tired prior to all of this but it's been on another level over the past few weeks leading up to and since the diagnosis of vitamin B12 and D deficiency.

  • I apologise that this will be a lot of reading.....

    A week after an injection I would have expected the level to be much higher and your Mum's age alone puts her at risk of developing a B12 deficiency because of the reduction of acid levels in the stomach which are essential to "capture" the B12 from her food and her doctor should take this into account.

    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".

    Do you see your Mum in any of the "other people" mentioned above?

    Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

    Weakness and fatigue

    Light-headedness and dizziness

    Palpitations and rapid heartbeat

    Shortness of breath

    A sore tongue that has a red, beefy appearance

    Nausea or poor appetite

    Weight loss

    Diarrhoea

    Yellowish tinge to the skin and eyes

    If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

    Numbness and tingling in the hands and feet

    Difficulty walking

    Muscle weakness

    Irritability

    Memory loss

    Dementia

    Depression

    Psychosis

    How many of the above can you "tick off"?

    If your Mum is suffering any of the neurological symptoms these need to be listed and presented to her doctor with a demand that he starts a treatment of B12 injections immediately and a check be made of her Folate level.

    Ask him to check the N.I.C.E guidelines for the treatment of B12 deficiency - he may not even be aware of them.

    google.co.uk/url?sa=t&rct=j...

    Click on the link, then on "Scenario Management" and scroll down

    As I say, I'm not medically trained but I have had Pernicious Anaemia (a form of B12 deficiency) for more than 45 years and I'm still "clivealive" at over 75.

  • This is so helpful thank you!

    My Mum has been prescribed proton pump inhibitors (PPIs) to reduce the associated risks of prescribed asprin so is obviously in the high risk category for B12 deficiency. Again the GP doesn't seem very aware of this though.

    Would depression, muscle weakness and difficulty walking be considered neurological symptoms? My parents asked him to check the NICE guidelines during the last appointment but he said they only applied to pernicious anaemia which I see now is not correct.

  • The neurological symptoms of vitamin B12 deficiency may include:

     Numbness and tingling of the arms and more commonly the legs

     Difficulty walking

     Loss of balance

     Hands feel gloved with loss of sensitivity

     Loss of vibration sense, having to look down to see where you are walking

     Unable to close your eyes and stand on one foot

     Night vision

     Memory loss

     Disorientation

     Dementia

     Extreme mood changes

     Short term memory loss

    Sadly there is a lack of knowledge about B12 Deficiency and P.A among the medical profession.

    I lived for nearly 40 years in total ignorance of what it was all about because I never knew anyone else with P.A. and none of the succession of nurses who gave me the injections or doctors whom I saw for other reasons ever asked me how I was coping and believe me ignorance is not bliss.

    Down through the years I noticed a return of some neurological symptoms in the run up to my next scheduled injection but my "one size fits all" doctor refused to believe me so in 2011 I joined the Pernicious Anaemia Society and learned that I was not the only person in the world to have these problems and the rest is history. I now have my injections more frequently.

    I'll say goodnight and wish both you and your Mum well

  • Hi Exile,

    I had low vitamin D and B12. I get a B12 injection every 3 month and take vitamin D every day. I had similar symptoms but instead of constipation I was the opposite. First of all, I would give a summary of your symptoms to the GP and get a copy put on file. I found after numerous visits that all that went on my records were discussions around low mood, nothing about the fatigue or aches and pains. I was also told that my vitamin D prescription was being stopped as I could buy over the counter. Fortunately I managed to see a private GP who said that the over the counter vitamins could not be relied upon to give a consistent and active dosage, and also as I was severely deficient (level 13, should be over 50) that it would be prudent to keep it on prescription to ensure I received a pharmaceutical dose that could be monitored and adjusted if necessary. I made sure the letter from the private GP went on my file and they did reinstate it on my prescription.

    My personal feeling is that there will be something underlying your mum's condition. It is your GPs responsibility to get to the bottom of it, keep on at them and please make sure you do get your letters of symptoms placed on file, that way there is less understanding of the consultation where your mum's concern of fatigue,eyesight etc is recorded as her reporting feeling down. I also had deterioration of my eyesight and was told it was my age, I disagreed as it was quite sudden and marked and was then told it was anxiety. I still wonder why GPs give out so many anti depressants, I am sure they do have a time and a place but they just seem so willing to hand them out.

    If you do go private, make sure you check the Dr out and have a good idea of what you want to get out of the consultation. They will appreciate this too as they will have a longer consultation time with the objective of understanding and hopefully helping your ailments.

    Best Wishes and good luck

    Aaron

  • Thank you for all of this. My Mum has been prescribed proton pump inhibitors over he past 12 months so we're wondering if these may be responsible for the onset of the deficiency. You're so right about all the symptoms just being ignored and the focus being on low mood or anxiety each time she goes back - I will pass on your suggestion about giving the GP a written summary of her symptoms for the records.

    The frustrating thing about the immediate insistence that anti depressants will be the solution is that I imagine they cost the NHS rather more than prescribing vitamins at the appropriate dose and frequency!

  • Proton Pump inhibitors neutralise stomach acid which is needed to help absorb vitamin B12. PPIs are a cause of B12 deficiency . I would definitely consult a private doctor (Nuffield hospitals) Get your mum tested for PA remembering that it's very inreliable ---MMA test is better than the blood serum test .

  • Hi, we're in the same boat!! We did pay to go private, and they were as dismissive about the situation as the NHS. I asked if it was an option to pay for regular injections there and we were told no. We've just bought all of the stuff so my mum can start self injecting!

  • Don't bother paying private, I did that and it is a waste of time after all if UK trained they don't learn about the importance of b12 I think it is a disgrace. U will never get B12 from NHS GP, not enough anyway. Buy it from Germany like thousands of Ms and B12 deficient people do. . IT is cheap as chips..... £8 for 10. One or half an ampuole a day for 14 days then 1 per mont. Delivery is about 15 euro they have a long date 1.5 years so buy enough. 80p a day and your mum will be sorted. The Vit D thing is a load of clap trap. DON'T TRUST THE GPS THEY DO NOT KNOW. . I have been misdiagnosed with MS for. 10 yes.

  • Please be aware that there is a connection between magnesium and the other minerals in our bidies... potassium, calcium, ect. Additionally, Magnesium should always be taken with vitamin d as a cofactor. Magnesium def will cause multiple symptoms such as extreme fatigue, constipation, ect.

    If this b12 level of 218, was a week after her shot, it it very very low and likely causing symptoms on its own.

    Yes, the ppi can cause much of these issues.

    So glad your mom has you to advocate for her in her time of need. I hope she begins to feel better soon.

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