Trying to help my 80 year old mum- advice would be much appreciated!

Hi

I'm new here and don't have PA myself but am here trying to help my lovely 80 year old mum who has no quality of life due to very low mood (was prescribed antidepressants by GP but she only took them for a few days as she felt like a zombie) and a crawling sensation on her scalp which is getting worse with other B12 symptoms. She's 80 years old and has been widowed for 20 years. She lives alone a couple of hours drive from us and it breaks my heart to hear her on the phone and obviously so unhappy.

Her mum and her brother both had PA but mum hasn't been diagnosed with even low B12, something which might be my fault. Basically, I was convinced her symptoms could relate to low B12 and last time she visited I gave her 5000mcg of B12 for four days to see if she felt any better, trying to convince her that B12 might help.A week or so later she finally had her B12 tested at the doctor after months of me trying to persuade her to do so. What I didn't realise until recently (and I feel such a fool) is that I might have skewed her results by giving her supplements for a few days.

Her B12 came back as 301 (range 180-650). The GP said this was wonderful for her age. As I know from the Thyroid UK forum that B12 needs to be at least 500, i bought her 2 months supply of 5000mcg of B12 and a good B-complex to go with the B12. She's been on these for a month now but reports no improvement and actually a worsening of her depression ("like a fog descending mid morning and preventing her from doing anything until it clears") and an increase in the crawling sensation which is now daily.

I'm at a loss as to what to do. I'd appreciate answers to any of these questions:

1. Could I have skewed her B12 results by giving her 4 days of 5000mcg of B12 supplements taken about 10 days before her blood test?

2. Is there a B12 test she could do which would reflect her true levels even though she's been supplementing and how long would she need to come off the supplements for?

3. Should I write to her GP expressing my concerns? I desperately want her to be able to enjoy her life while she is still mobile and able to be independent.

4. Should I continue to get her to take supplements but increase the dose to,say, 1000mcg?

Thank you so much in advance and I'm sorry this has turned into an essay.

Kipsy

16 Replies

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  • to answer your questions

    1. that dose of B12 could have skewed results (was it 500 or 5000?) - either could have had an effect.

    2. currently no test that would be able to adjust for the skewing

    3. yes - write to GP though they may still not be convinced that the oral dose could have made a difference.

    4. don't know - it sounds as if the B12 isn't making any difference so it may well not be B12. I know that 'must be 500' is often quoted on the TUK forum but not sure what the source is and it is more in the realms of urban myth than fact.

    serum B12 isn't a gold standard test - it will miss 25% of people who are B12 deficient but also pick up 5% who aren't if it is used as a single measure. Symptoms are important - one common symptom is macrocytic anaemia but this isn't present in 25% of people presenting with B12 deficiency. Were there any other vitamin and mineral abnormalities in your mother's blood work? Is your mother on any medications that would interfere with B12 uptake - eg metformin, PPIs?

    are your mother's folate levels adequate? folate deficiency has pretty much the same symptoms as B12 deficiency.

  • Thank you very much Gambit62. The B12 she had for a few days before the blood test was 5000mcg.

    Mum's folate was 6.4 (range 2.8-15) and vitamin D was 63 (above 50 supposedly sufficient). I've got her on a B-complex (Jarrow's B-right) that includes 400mcg of folate as Quatrefolic 6S-5-methyltetrahydrofolic acid and I've also got her taking 5000iU of vitamin D (plus K2 and magnesium supplements as I believe they are co-factors.)

    She takes no medication at all, something she's very proud of.

    I'm at a loss as to how to help her further but thank you for your comments. I will mull over them and consider writing to her GP (mum's adamant she doesn't want me to and got quite cross when I suggested).

    medichecks do something called an Active B12 test- are you familiar with this and would it be something worth doing or would supplementing skew those results too? Sorry to keep asking questions- I'm quite clued up on Thyroid issues as I'm hypothyroid but very ignorant when it comes to PA/ B12.

    Thank you again!

  • active B12 would also be skewed.

    recommendation is to avoid supplementing for 3-6 months to get a baseline (and even then that isn't necessarily guaranteed).

    At 80 your mothers risk of B12 deficiency is (statistically) increased but if she doesn't have any signs of digestive issues - low stomach acidity is the factor that makes B12 deficiency increase with age - and her diet is good for B12 and folate then think that the issue may be something else.

    It is possible to be deficient in B12 at the cell level with serum levels well into the normal range - as above. Have you made a full note of all of the symptoms

    pernicious-anaemia-society....

    if the main problem is low mood and this seems to have been an issue since your father's death then it may be that doing something to tackle grief and get her out and socialising with other people might be part of the answer.

  • Huge thanks Gambit62. I'm going to spend some time this afternoon delving into all the links you and Sleepybunny have so kindly provided. Many thanks again to you both for your expertise and comments. I won't rush to arrange an active B12 test for mum and thanks for clarifying the fact that if the B12 supplements haven't made much of a difference after a month, there's not much point in doubling her dose. Thank you again.

  • If your mum's mum and her brother both had PA then it's very possible that she does too , and no amount of supplementation of B12 will help , unless it's injected . . I believe that's what my own mother had now that I have so much knowledge of PA . She died a very slow death with so many of the symptoms of what I now now to be PA . Her blood was never tested , and she spent her last few years in a home .

    Have you told the doctor this info. About your mum's mum and brother ? Very important that he/she knows . Also as one ages , ones stomach acid gets less , which inhibits absorption of vitamins and minerals . Vitamin B12 is the most difficult vitamin to absorb , and impossible to get it through the stomach if one has PA . If you can afford it , go to a private GP ( Nuffield hospitals have them )where you will have time to discuss everything at length instead of 10 minutes with an NHS GP , part of which is the doctor being on the computer , when one can say nothing ! Injections are the only help if your mum has PA . Vitamin B9 folate / folic acid plays an important role with B12.utilisation .so make sure she gets enough . I'm so glad that your mum has a lovely daughter . I'm her age , and my daughter and son are thousands of miles away! But I managed to find my salvation through learning how to self - inject and my life has turned around even at this late stage . ( due to consulting a private GP , not my NHS one. )Very best wishes to you both .

  • Wedgwood- that brought tears to my eyes. I'm so very sorry you went through that with your mum. It's exactly what I'm worried about at the back of my mind. I'm going to read all the links the kind folk on this forum have given me today , do lots of research & keep pursuing a solution. Thank you so much- I'm glad you're managing your condition. X

  • Yes I am . I've never felt better . When one reaches a certain age I'm afraid that doctors just write off everything as down to age , or as I was once given a diagnosis of "DOB'S DISEASE " by a consultant .When I expressed puzzlement he explained "Date Of Birth Disease " Yes I know that one deteriorates with age , but it's just a cop out to use this diagnosis all the time .

  • Outrageous! I myself have autoimmune thyroid condition (Hashimoto's) and I've lost a lot of respect for the medical profession over their ignorance of the condition since diagnosis.

    I've decided to make an appointment for mum to see a GP that she likes and go with her armed with all my arguments and research once I've collated it all. Tried to book an appointment just now only to be told that that dr has nothing available for 6 weeks and to try calling back in a week when they release more appointments. No wonder my poor mum gives up!

    Onwards and upwards!

  • Wedgewood I've been thinking the same recently about my own mother having learnt so much here but I can't dwell on that now. I minded her at home with dementia for many years and she only got an injection every month. I'm 68 and have PA since I was 40 but recently started SI from reading here and having neurological symptoms for the first time recently and doctor not taking me seriously. I live in Ireland. I just don't understand. Is it that doctors are too busy or don't have time to listen when you look fine and are not actually sick on the outside???

    Jill

  • I was just going to reply in the order of what wedgwood Just said above. My mother deteriorated to such an extend that she was labelled being dement. When she was given B12 injections to perk her up for her and dads 60 wedding anniversary, we saw our old mum appear for a few days. These injections weren't continued and at that time I myself was unaware of B12 and B9 deficiencies. She sadly passed away not long after.

    To convince your mum and her GP to just try her with a loading dose of hydroxocobalamin injections and see if it will do any good, I suggest will be very difficult. There is also the private option. The injections aren't very expensive and can't do any harm, if her body doesn't require anymore, it will be removed through her kidneys in her bladder etc.

    Old people are not always getting the treatment they deserve, alas. Not cost effected perhaps. Written off too quickly to make way for the next generation. Read the information on the PAS site, very helpful!

    I send you my sympathy and hope someone will listen to you and do what benefits your mother.

  • ACritical- thank you SO much! I have been very touched by everyone who's replied and I know mum would appreciate it too if she knew. I think she thinks I'm getting obsessed by health stuff as I've recently been diagnosed with Hashimoto's and my husband's undergoing tests for Addisons plus I think my nine year old daughter may have low Btwelve. Sorry iPad has frozen and refused to type numbers!

    Suffice to say, I really appreciate everyone's words of wisdom as I'm not very clued up re PA.

    Thank you ever so much! With best wishes, Kipsy

  • Hi,

    Are you in UK?

    If yes, I'd suggest reading

    1) BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/gui...

    Outlines diagnosis and treatment of B12 deficiency in UK.

    Flowchart from BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA Intrinsic Factor Antibody test and start initial B12 treatment. This applies whether B12 is low or within range. I gave a copy of BSH Cobalamin Guidelines to my GPs.

    Has your mother had an IFA test?

    IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative. Some UK Gps may not know about Antibody Negative PA.

    Is your mother symptomatic for B12 deficiency?

    "a crawling sensation on her scalp which is getting worse with other B12 symptoms"

    Have a look at lists of B12 deficiency symptoms below

    pernicious-anaemia-society....

    I gave my GPs a copy of PAS checklist above with all my symptoms ticked and included any symptoms not on list.

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    Risk Factors for PA and B12 deficiency

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    Having blood relatives with PA is a risk factor for developing it.

    Having other auto-immune conditions in the family eg thyroid disease, diabetes, coeliac disease is also a risk factor.

    Health Problems in Elderly

    My impression is that sometimes health problems in the elderly are put down to ageing when there may actually be a treatable condition.

    PAS (Pernicious Anaemia Society)

    Have you considered joining the PAS?

    They are helpful and a good source of info on PA. They are busy and may not have the resources to help non-members. In some cases they can intervene on behalf of members.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

    There are stories on Martyn Hooper's blog that may be relevant to you. Martyn Hooper is the chair of PAS.

    martynhooper.com/2017/07/01...

    There is a section on PAS website for medical professionals which may be of interest to your GP.

    pernicious-anaemia-society....

    Members can also access details of PAS support groups which can be a source of info on helpful GPs etc

    pernicious-anaemia-society....

    UK B12 Treatment Info

    in UK, people with b12 deficiency with neuro symptoms eg tinnitus, tingling, pins and needels, numbness, balance issues, memory problems plus other symptoms are supposed to get more intensive treatment.

    1) BNF British National Formulary Chapter 9 Section 1.2

    bnf.nice.org.uk/drug/hydrox...

    cks.nice.org.uk/anaemia-b12...

    2) UK B12 treatment info is also in BSH Cobalamin Guidelines about a quarter through document.

    Test Results

    Does your mum get copies of all her blood test results?

    I learnt to do this after being told everything was normal and then finding abnormal /borderline results on copies. Some people on forum get a complete set of medical records so they can track changes in results over a period of years.

    Access to medical records

    nhs.uk/NHSEngland/thenhs/re...

    england.nhs.uk/contact-us/p...

    nhs.uk/chq/Pages/2635.aspx?...

    In relation to B12 I look particularly at B12, folate, ferritin and Full Blood count (FBC). Results may be affected if a person has been supplementing recently.

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    patient.info/doctor/folate-...

    What to do next?

    b12deficiency.info/what-to-...

    B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Martyn Hooper is chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of book above to my GPs.

    "Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Has several case studies.

    "Could it Be B12; An Epidemic of MIsdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies.

    Unhappy with treatment?

    Link about writing letters to GPs about B12 deficiency

    b12deficiency.info/b12-writ...

    Point 5 is about being symptomatic with normal range results

    CAB

    citizensadvice.org.uk/healt...

    HDA patient care trust

    UK charity that offers free second opinions on medical care and diagnoses

    hdapatientcaretrust.com/

    B12 and Mental health

    martynhooper.com/2017/01/22...

    b12deficiency.info/b12-and-...

    How Soon do Symptoms Improve after starting B12?

    Although some people see improvements very quickly, for others it can take weeks even months to see any improvements especially if they have been experiencing low B12 for a long time.

    I am not medically trained just someone who has struggled to get a diagnosis.

  • Thank you Sleepybunny! Yes we're in the UK. I will have a good look at those links. Much appreciated. Just really want to make mum a bit happier as she's been really lonely since dad died 20 years ago and it's so sad to see her suffering if it's something I could easily help with.

  • What a lucky Mum having such a wonderful daughter who understands.

  • Hi Kipsy

    I think everyone has answered your questions fully but I just wanted to weigh in because of the crawling senstion you mentioned. I just happened to read in a magazine earlier today that this sensation, not always limited to the scalp, it can sometimes be all over (ick, imagine) anyway, it is definitely a side effect of anti-depressants. Your Mum should see her doctor and look at changing the one she has taken. Most anti-depressants will make you feel a bit zombie-like for the first week or two. Depression is (simply put) a chemical imbalance in the brain and anti-depressants work by balancing out those chemicals again, so the zombie feeling is just your brain and body adjusting to the change. Once they start to work, and it can take up to a couple of weeks, that feeling should lessen and hopefully your mum will feel better able to cope and a little happier. I would never recommend anyone taking anti-depressants, but sometimes it is necessary. I'd also encourage her to maybe attend club if there is one locally. Some provide free transport. Ask at the local library, health centre. It sounds as if she is quite lonely which doesn't help everything else that is going on. I hope your dear Mum starts to feel a bit better soon, hugs B x

  • Thank you so much B. Really kind of you to message- much appreciated! However the crawling thing started about a year ago & mum only started antidepressants a couple of months ago which she took for a few days then came off due to deciding she really didn't want them.

    We had a great chat last week & she seemed in better spirits & she's coming to stay with us for a few days this week so I said we'd chat about her symptoms then & see how many PA/ low B12 ones she's got before perhaps she goes back to her dr, possibly with me with her.

    Thank you so much x

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