Mum completely denied treatment

My mother has been to the gp because she has lots of B12d symptoms and a lot of the precursors to it. She has been on esomeprazole for many years but her GP said it is rubbish that proton pump inhibotors cause b12 d. He said her levels were 495 when lasted tested but she was on a B vitamin complex. The GP refused to test her or listen. He said it was all rubbish and would not listen about skewed results due to supplements. She has congenital chronic pancreatitis and has had her spleen, duodenum and pancreas removed, she is on long term esomeprazole, she has had candida overgrowth, and has an abnormal heart rhythm - all causes of B12d. Her dietician believes she is coeliac but the GP disagrees. She showed evidence to the GP but he would not even consider it. Her GP said she has a complex medical history and her tiredness etc is down to that - just because she has a complex history does not mean she will not have B12d, in fact after her stomach surgery etc she is more likely to have it. She showed him an article about proton pump inhibitors causing B12d and he said it was over simplified and rubbish. He said it is not the drugs but the stomach acid that causes it. oh and he said with a ferritin level of 13 she couldn't possibly have b12d.

19 Replies

  • Sorry to hear that your mother is struggling. Does she have a specific GP assigned to her? (sorry - no idea how old she is and these days older patients get assigned specific GPS - so can be even more pot luck as to whether you get someone who listens.

    Did she go on her own - might be worth trying again with someone accompanying her if she was alone last time. Otherwise consider making an appointment with another GP from the surgery ... and try getting a double appointment to give more time - some times it helps. GPs are becoming terrible clock watchers these days.

    There is quite a bit of literature out there on the fact that serum B12 gets even worse as a guide as you get older. In one study significant numbers of 'in mates' at an old folks home showed noticeable benefits from high level B12 supplementation even though their serum levels were well within range .... (bit to tired now to be politically correct :))

  • She is not with a specific GP but saw the one that she has frequently seen with her congenital chronic pancreatitis. She is 65 years old. She has said she will speak to her dietitian as she tends to listen and be more holistically minded than a GP.

  • Hope it works out

  • If I had a GP like your mother's, who refused to listen, referred to everything I said as rubbish, refused to take anything I said seriously, brushed me off, ignored my concerns, refused to even test me, came out with nonsensical comments like "with a ferritin level of 13 she couldn't possibly have b12d", I would think it was long overdue time to get a new GP.

    She showed him an article about proton pump inhibitors causing B12d and he said it was over simplified and rubbish. He said it is not the drugs but the stomach acid that causes it.

    Your GP has tested your mother's levels of stomach acid has he, and he knows what her levels are? It would be a rare GP who would do that or even arrange for it to be done. In healthy people stomach acid reduces as people get older. By the time people are 80 they are almost certainly not producing any.

    It is far more common for people to get symptoms of indigestion and heartburn from low stomach acid, rather than having too much of it. There may be good reasons for your mother to take the PPIs as a result of her complicated medical history, for example taking NSAIDs requires PPIs to be taken as well to protect the stomach. But just because there may be good reasons doesn't mean that she isn't vulnerable to the side effects like B12 deficiency.

    The more times I re-read your post the more annoyed I get on behalf of your mother! I think she should find a new GP as soon as possible who takes her and her medical health seriously.

    On a different subject, it is possible to get blood tests done privately without the permission of a GP. Obviously they cost money though. There is some info on the subject, and lots of links on this page :

    Obviously the link is geared towards getting tested for things related to thyroid health, but the sites referred to have tests for all sorts of conditions, not just thyroid issues.

  • Sleepypuss, your Mum needs a GP who will listen and consider her medical requests. Thank goodness she has you to help.

    May I suggest you both see a Dr (you might feel this one should have another chance...but I suspect not) with a list of symptoms - there are check lists you'll find here - and ask for a thorough new look at what is going on. Go too so you can be her advocate. This could be urgent and permanent damage could be done without prompt treatment. Ask for the antibodies test for GPC and IF.

    Also,as a last ditch effort, ask for a trial of loading doses to see if it makes a difference... then I'd consider self injecting, but I'd try to find a sympathetic doctor first and do it under Dr supervision!!

    Good luck! And don't take no for an answer!

  • I am failing to get my gp to listen to me about my son and myself so how much of an advocate I could be is questionable. Also my mother lives 2 hrs away and I am on night shifts (as a student I can'T take time off) so a visit is impossible . I have been in touch with a b12 as they are in her area and been given the name of a gp in her practice that will listen. Her dietician also seems very good so may be able to push her gp, so she is going to try that avenue. She has had this problem all her life. She was born with chronic pancreatic is but was fobbed off with attention seeking, depression, in her head etc until she was 45. Now she has had her pancreas out and she is diabetic one of the gps in the surgery insists she is a type 2 diabetic when she is actually an enforced diabetic and should be treated as a type 1. The recommended gp is away on holiday but I have told her to stick to seeing her as she is very good and listens. Mum has shown her info about stuff in the past and she becomes very interested and always asks if she can keep the hard copy. I will keep onto her to persist with this because I obviously do not want pa written as a cause of death. When I get my summer break (august) I can attend with her but I would like her to be treated before then. Hopefully this good gp will do what is necessary when she returns.

  • "She has been on esomeprazole for many years but her GP said it is rubbish that proton pump inhibotors cause b12 d"

    i wonder if your Gp has seen these articles?

    1)From NHS Choices

    Look in "medication" section

    2)BCSH Cobalamin and Folate guidelines

    page 14 mentions deficiency due to PPIs. In this case it suggests oral supplements.

  • As he refused to even look at the articles and evidence she had, he would not look at this either. He does have a reputation for being up his own rear end and having 'special patients' that get to see him while others find it very difficult.

  • I have heard that some people get their B12 deficiency picked up by other medical professionals rather than GPs.


    Does your mother have problems with her feet eg tingling, pins and needles, symptoms that suggest neuropathy? Podiatrists are able to prescribe b12 injections.

    there's a post on Martyn Hooper's blog about podiatrists being in a position to spot possible PA.


    Opticians may also be able to spot deterioration in the Optic nerve etc. I have asked my optician to look out for damage characteristic of B12 deficiency.


    Some signs of b12 deficiency show up in the mouth so a dentist might spot possible B12 deficiency eg mouth ulcers, sore, swollen tongue, bleeding gums

    "he would not look at this either"

    I have met medics with this sort of attitude. In the past I have written letters containing the information I want medics to read along with a request to put a copy in my medical file. My understanding is that letters have to be filed so to me it was proof that I had raised the issue.

  • She does have problems with feet (walks with a stick) and sees a podiatrist. My podiatrist is shocked at how I am being treated so I am hoping she will write to the GP and suggest a neurologist referral.

  • "Her dietician believes she is coeliac but the GP disagrees."

    Did the GP give her a coeliac test? If she has Coeliac symptoms but her blood test came back negative then there are other tests Gp can order. If she has IgA deficiency then she will not produce the normal Coeliac antibodies. IgA deficiency can lead to an increased chance of developing auto-immune conditions.

    Coeliac UK has a helpline number

    0333 332 2033

    Info on IgA deficiency

    I hope you both find a caring GP soon.

  • She has been tested in the past but the Dr refuses to do any more tests. The dietitian is very sure of it because she is now gluten free and off the morphine. The GP says she has got better before, but she has never been off the morphine before. The dietitian appears to be very holistic and thinks all her problems are linked whereas the dr treats each individual problem but doesn't try to find a root cause for all. After all the problems she has had and all the surgery, B12d is almost a certain. She is going to speak to her diabetic consultant because she is seeing him next week.

  • I will give her those details though, thank you x

  • I suggest that with a GP this obstructive you might find it helpful to contact the Pernicious Anaemia society. They are able to intervene in cases where someone is having real trouble getting their doctor to listen. Or they may be able to help your Mum find a more sympathetic doctor in her area. Good luck.

  • I agree with others re. changing clueless GP.

    Apologies if you've already have seen the latest BMJ research document (page 1 "if there is resection....", and BCSH guidelines, but your mum's GP obviously hasn't as it states, under 'Poor absorption due to gastrointestinal surgery or disease' (bottom of page 10), "Patients who have had barbaric surgery should have their cobalamin levels status monitored and are likely to need cobalamin supplementation via a route depending upon the type of surgery". It also has a useful summary.

    It might be a good idea to email it to him.....

  • Her diabetic consultant does not care about the GPs opinion and is sending her for bloods for calcium, B12, folate, thyroid function and CRP. She did tell him she is on supplements so hopefully he will consider that when he receives the results. He said she is one of his success stories as far as blood glucose results go so I think he wants to get to the bottom of her other complaints in order to produce a well patient.

  • she can get an on line celiac test just to check and rule it out, quite cheap

  • She has now been admitted to hospital with severe headache and scanned for a bleed, negative thankfully. May or may not be related to everything else.

  • That is digustingly bad care . I am so sorry to hear this . You will not get any joy with an arrogant doctor like that ! Go and buy B12 Boost spray by Better You from Holland and Barrett and spray it under your tongue about 4-6 times per day . It contains the active form of b12 , methylcobalamin . You can also get Jarrow`s Methylcobalamin lozengers on line . These go under the tongue , as does the spray .If you have PA you will not be producing intrinsic factor so won`t be able to convert the hydroxycobalamin your doctor will be giving you as this is inactive and you need to be able to convert and absorb it . You will need to use the active form of b12 , methylcobalamin . Your GP will not tell you this . Methylcobalamin is not available on the NHS and has been reserved for the private sector . Lots of doctors have left the NHS to take up private practice and will be charging upwards of £100 per dose for something worth 70 p . What a rip off !

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