Could It Be We're Being Too Polite?

Having just looked up information in the book, 'Could it be B12?', by Sally Pacholok and Dr. J. Stuart, I came across this - a good reminder perhaps not to be afraid to speak up as well as recruit extra support from the PAS or a close relative/friend when battling for continued injections:

"Many of us are taught (or intuit) that it is not good form to play too active a role, never mind a contentious one. Questions to doctors should be polite and deferential.....if we feel irritated with the doctor's demeanour, we might save our gripes for relatives or friends...."

"Unfortunately, when it comes to B12 deficiency,....politeness can be fatal. In our own practices, we've seen dozens of people who were diagnosed as B12 deficient at some point in their lives but later allowed doctors to discontinue their treatment. Several paid a high price for this lack of assertiveness because they now have permanent neurological damage or dementia. Conversely, we know of patients with B12 deficiency who are alive and well today only because they, or an assertive family member insisted - sometimes in the face of significant resistance - on proper diagnosis and treatment."

19 Replies

  • Which is why, if you're not a know-it-all, cantankerous, old git like me, it's a good idea to take somebody else along with you. And to arm that person with a list of questions you need answering and a load of info to back up those demands.

  • Hahaha fbirder,

    The good thing is you can admit that you're a Know-it-all, cantankerous, old git. In my book that's half the battle.

    J x


  • In the end I had to admit it. There were just too many people telling me that it was thus.

  • Ah, you took the words right out of my mouth fbirder. Still, I'm very glad we have you on here for all the brilliant help and advice you give.

  • The world needs more cantankerous old gits. Especially the B12 deficient world. Long may you reign!

  • I took my daughter to an early diagnosis appt and she asked questions with and for me only to be told nothing would change, no i wouldnt be refered further for neuro, haemo or anything. So i took my health in hand firstly with patches and drops and now injections.

    It will be interesting at my next appt, (when i can get one!) as to how they are going to proceed with my new celiac diagnosis, i wonder if they will as dismissive about that too.

  • Get a test for h pylori too. Known to lower B12 and causes digestive symptoms (particularly bloating, burping, diarrhoea).

  • Thank you Laura I will ask for that test when I speak to him on Monday. My cousin tested positive for h-p so I could as well.

  • Know exactly how you feel.... In the end, the most important thing is to get enough B12 quickly and the stress of battling with medics at a time when you're low doesn't help anyone.

    I hope things go well with you both now....

  • Thank you. I just want to feel normal and well. X

  • Hi Blackstar,

    I have read that it is possible to have Coeliac disease even if the antibody test is negative. See link for details.

  • Thank you SB. I've just had a look at the link. I've looked at the symptoms of Coeliac and don't really have them apart from a little gas and bloating. My blood tests are good (apart from high folate) but yes, I agree about the test not being reliable. My friend had a negative blood test then paid to have a biopsy test as she was sure she had it and was positive. I'll just be glad to get to the bottom of all this. Thanks for your help.

  • I completely agree. I had to be the most assertive I have ever been in my life. I basically told GP it was my health and I was not willing to take the risk of no treatment and insisted on the recommended treatment of alternate day injections and have never looked back. I was not quite with it during that period but had enough to realise there was something seriously wrong and to be able to research B12 deficiency and realise it had to be sorted. If I had not done that, I dread to think what might have happened to me!

    Be assertive. It is your health!

  • That's great and so encouraging to hear SecondChance.

    I can't help feeling that women have a harder job being taken seriously - especially small women - I notice my tall and very confident friends seem to be heard.....

  • I think it would be good Polaris idea for all members of this community to have copies of both "Could it be B12? an epidemic of Misdiagnoses" and "What you need to know about Pernicious Anaemia & B12 Deficiency".

    I was diagnosed with P.A. in 1972 and in reality should have been given B12 injections following the removal of two thirds of my stomach due to a perforated peptic ulcer in 1959.

    For all of these fifty plus years I have lived in complete, total and utter ignorance of what it was all about. Neither the succession of doctors I saw or the nurses that gave me my monthly jabs of cyanocobalamin ever asked me how I was coping so I never said anything about "how I was coping".

    The fact that I realised that I wasn't coping is borne out by the fact that down through the years, "without saying anything", I used to "slip in" the occasional three weekly injection which was fine until one month I made the mistake of telling the nurse "see you in three weeks". She looked at my prescription which said "every four weeks" and quite rightly, said she wouldn't give me one and reported me to my doctor. He called me in, hauled me over the coals and adamantly refused to alter the prescription because that's what it said in his little book.

    As I didn't know anyone else with P.A. or B12d to compare notes with I struggled along with the four weekly jabs until somehow I was prompted to "Google" P. A. and stumbled across the Pernicious Anaemia Society. I joined and my first question on the (then) forum under the name "clivealive" was (in summary) "am I the only one who feels the need of more frequent injections in the run up to the next one".

    The response amazed and encouraged me to go back to my "one size fits all" doctor with my wife beside me and we "persuaded" him to continue to let me have the occasional three week injection - when I feel the need.

    Hopefully his next and successive patients who presents with the same problem will also get the same sympathetic and positive response.

    My prescription now reads "as directed".

  • It's good to hear success stories that pave the way for others, Clive, but sad that you had years of insufficient injections that could have improved life.....

  • Absolutely I have been fighting the medical teams with relatives for other conditions it just wares you down, & blocks you! I think they need to think of every patient as individual & understand that they know their bodies or relatives & listen to people's symptoms - sometimes don't fit the norm!!

  • Sadly, Emfeet, this is the experience of so many on the site - it's much easier for them to send us away by prescribing a drug for, say, depression (all in the mind) than get to the root by diagnosing on history and symptoms.

    Having spent years successfully defending my higher dose of thyroxine, and then battling to eventually get my relative's B12def. recognised, I treat both Hashi's and B12 myself, as any trip to the surgery sends BP soaring....

  • Fbirder,

    I wish I had a "cantankerous old git" to take with me to appts. I've had to fight my health battles on my own.


    I agree that those 2 books are very helpful, I gave GP a copy of Martyn hooper's book. I also think it might be helpful to have a copy of Fbirder's summary of documents for when GPs /consultants say something about b12 deficiency that isn't correct.

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