My luck has run out

Well, after being so lucky with my GP and practice nurses, my luck has run out. Today I went for my appointment with the consultant haematologist.

He started off by saying I probably didn't have PA. I asked what he thought a combination of - very low B12, anti-GPC antibodies and a diagnosis of autoimmune gastric atrophy from a gastroenterologist - meant! He conceded that I might have PA but would need a test for anti-IF antibodies. I asked what help that would be when it turned out to be negative (as it would do in 50% of those with PA). He changed the subject.

Then he said that my symptoms can't be due to B12 deficiency because of my frequent supplementation. When I asked why they improve with frequent B12 injections he said it was due to the placebo effect. I was ready to walk out., especially when he suggested it was normally women that came up with nonsense like mine.

He then tried to tell me that my symptoms of Sub-Acute Degeneration of the Cord (unsteady gait, lousy balance, brain fog, depression etc.) were all due to my peripheral neuropathy.

Then he tried to tell me that most of my symptoms could well be due to my Neuroendocrine Tumours (NETs) in my stomach. I explained that these were baby tumours, so small theat they show up on none of the various imaging techniques they've used and they're not secreting any of the normal hormones one would expect. Indeed, the only evidence for their existence is histological.

Only two good things came from the not-quite-wasted morning. Last time I had my MMA tested it was just 2 days after a jab. Today I had it repeated, along with homocysteine - after a 16 day break with no supplements at all.

I also got a referral to a neurologist. I hope they're not so closed-minded and arrogant (he kept telling me that he gives talks on B12 - no wonder there are so many ill-informed GPs about).

So, I've been a bit depressed this afternoon, but really nothing much has changed. I'll carry on self-injecting as often as I need it. It'll be interesting to see how frequently I can get a B12 (sorry, placebo) prescription from the GP. I currently have a 10 week (for 5 ampoules) repeat. I'm tempted to 'forget' to ask about it next time we meet, to see if he'll 'forget' to change it.

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  • Sorry to hear that you had such a frustrating morning.

    Have you thought about something like passing the consultants details along to the PAS with a suggestion that they try to wangle their way into one of his talks and find out what rubbish he is spreading so they can may be contact him and explain where he is wrong?

  • I've just remembered. One suggestion he did make was that my experiences could be explained if I'd developed antibodies to B12. Sounds familiar?

  • Good idea Gambit62

  • Clever, clever!

  • So sorry FB - what can I say ? God help us all if this clueless and sexist idiot is lecturing GP's on B12 - off to meditate or something before I explode !

  • I think I'm going to meditate by staring into a large glass of Chateau Neuf du Pape.

  • 😀 Good idea - must be wine o'clock

  • Sadly, the older I am the more used to being spoken to as though I'm a moron I become. However, I am not as knowledgeable or as articulate as you and am really taken aback that you have been subjected to this type of attitude. What hope is there when professionals behave in this arrogant and dismissive manner. Enjoy your wine and I intend to join you with a very large glass of my own.

    Non illigitamus carborundum

  • Someone recently put up a posting explaining the 'placebo' effect. It made rather a lot of sense. It can only EVER be a placebo effect when it IS a placebo. In other words, if your doc gave you coloured water and you got better and believed it was the water doing it, thats a placebo effect. In your case there is an active ingredient so its definitely not a placebo.

  • Sorry, meant to add, I really think you should make a formal complaint, about his blatant sexism if nothing else.

  • I'm hoping I've got the whole thing recorded. I'll be spending the next few days going through it. Otherwise it would be his word against mine. Obviously my reaction gave him a clue that I'm not the sort of person who would join in the 'all boys together' snickering.

  • So sorry it was that awful. I'm not sure but I think you'd have to have permission to record the consultation beforehand? Not sure what law covers it. You can of course complain to PALS within the hospital and I'm told it is confidential.

    I think at some point we've all met up with someone like this in the medical world, I know I have. No comfort as you come home spitting feathers. Hope the wine was good, CHEERS! Have one for me I get drunk on a thimble full. HIC HIC😀

  • I don't think you have to ask permission to record a consultation :

    pulsetoday.co.uk/your-pract...

    People have to register to read Pulse. But I think it is worth it.

  • Complain about his comment about women and his lack of knowledge. Google complain about gp service and oi should get a link to cab and they will have a link to an advocacy service for complaining about nhs. His attitude stinks. Please do not think all health professionals are lime that. I am training to be a midwife and would not dream of speaking to someone in that way. Your concerns are important and not to be dismissed. Sadly we get treated like idiots by our gps too.

  • That's appalling - actively abusive and discriminating. Thank you for posting.

    What do they gain from being so awful? I suppose a fat wage, a sense of power and a position in society - all the things this illness denies us!

    Good luck!

  • You have my permission to stab your consultant haematologist - in his backside - with the biggest hypodermic needle you can find filled with b12 and see if he feels any benefit after it. That's after he comes down from the ceiling :D

    Perhaps he should read this

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

    Best of luck with the neurologist

  • Hi Firder, that's awful and truly outrageous that such ignorance and lack of understanding exists at "specialist" level.

    For some reason there is a consistent message coming out of the NHS where Drs and specialists are ignoring the BJH guidelines - why I will never know.

    Everything I'm doing now is in writing and every time they give me lame excuses and ill informed information I ask them to put it in writing so at the end of this crazy situation I can pull it all together and complain to the highest level.

    Re Placebo effect - I got sent this last night - you might want to send him this article...

    lookaside.fbsbx.com/file/20...

    Keep fighting and keep the head up as you have been such a big help to everyone on here. Hopefully your DNA tests will help.

    Thanks

    A.

  • Words fail me completely, sorry about the language but what a complete ignorant t••t! I had an appointment just like that with my gastroenterologist. When I told him I was a member of the PAS he said "is that where a group of women get together and dream up symptoms"!!! I came home crying. My only saving grace is believing in Karma and praying they all go down with PA!!!

  • Shocked by the unkindness shown to you Parlay.

    I would always take someone with me as a witness but sadly do not have someone willing to accompany me.

    "I came home crying"

    Happened to me many times due to unkindness, was shouted at etc.

  • Ps. I can't drink but could join you all in a ritualistic head banging session in a padded cell!!! Xx

  • Hi Fbirder,

    So sorry to hear about the haematologist. I recently had contact with a haematologist who talked about the placebo effect of B12. I did manage to stop myself saying something rather rude but was thinking it inside my head.

    I can't find any research that mentions a placebo effect to giving B12. I suspect that if you contact the PAS they won't know of any either. I'm sure Martyn Hooper would be interested in hearing what happened.

    pernicious-anaemia-society....

    01656 769 717

    Office open 8am till 2pm every day except Sundays

    Sadly you are not alone. See Letter 3 in this link. The person who runs the website would probably be interested in hearing your story.

    b12deficiency.info/letters/

    "I also got a referral to a neurologist. I hope they're not so closed-minded and arrogant (he kept telling me that he gives talks on B12"

    How about anonymously sending a copy of Martyn Hooper's latest book to the neurologist and maybe a set to the haematologist you saw.

    "I was ready to walk out., especially when he suggested it was normally women that came up with nonsense like mine."

    I think such an attitude is unprofessional. Did you have anyone with you at the appt? In my experience medics are usually politer and kinder when there is a witness present.

    I have been shouted at by a medic at a point when I was scared and vulnerable. It made me very depressed because I believed at that point no-one was going to help me. In fact I've had more than one similar experience.

    Unhappy with treatment and attitude?

    My personal experience of PALS is that they are ineffective. They will listen which I guess can be helpful but nothing changes.

    If I ever complain again then I will go to NHS England or the Health Ombudsman. I would also consider going to my MP and asking their advice on how to complain. MPs can be useful for getting answers from officials who might not have time to answer a member of the public.

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

    nhscomplaintsadvocacy.org/

    seap.org.uk/services/nhs-co...

    In the past I have heard from people whose complaints were not handled kindly. Sometimes complaining can lead to being labelled as a difficult patient.

    "Everything I'm doing now is in writing"

    I think this is helpful advice. My understanding is that letters have to be filed.

    I think Mabsie may be right about needing permission to record conversations. I don't think consultants could object to you having someone with you who took notes especially if you have memory problems but I could be wrong about that.

  • I had a similar experience with a neurologist (about migraine, not B12). So don't build up your hopes. It was less than helpful - set any hope of proper diagnosis and treatment back. Arguing about placebo effect and statistics (as in a certain medication is 'statistically safe') took up most of the appointment. He was also sexist, and would not look at anything outside his field, eg hormones, nutrition. Make sure you have your evidence with you. The subsequent problem is that the GP follows their instructions, opinion and advice.

  • This is terrible, I think I would have walked out. Interestingly, my GP tried to say the same thing about placebo effect, my husband was with me at the appointment. He said " If it's not expensive, and people are feeling better from the injections, does that matter?" I have to say the GP was forced to agree with him, and I got my six-weekly injections!

    Do hope your neurologist is better informed? I would also, as suggested, let Martyn Hooper know about your poorly informed consultant.

    Best wishes MariLiz

  • How depressing is that. Its awful for you. My husband is a great believer in putting it all in writing and seeking comment. Most of it is in your post. Other than that a complaint but PALS vary in usefulness. Our local one is not very helpful. I once contacted the Chief Exc at the hospital about sometihing and that helped. Good luck and good health x

  • Good luck. Do you keep a log book for "evidence" to show your Dr(s) how all the symptoms react to the B12 and all the supplements?

    Why does it have to be a "PA" diagnosis and not just a B12 deficiency diagnosis? The tests are not reliable enough.

  • Many thanks for all the kind responses, and apologies for not being on here for quite a while.

    After my experience with Dr Moron I had got bit by the black dog of depression (not helped by going cold turkey on the B12 for 17 days), then I had a bad cold, then my PC got attacked by some nasty malware (called Kaspersky Internet Security and Mozilla Firefox) so that Healthunlocked was taking 80 seconds to open each page. Then a trapped nerve in my shoulder, then another cold.

    But I'm now back, and feeling good. I saw my GP and explained that I was ignoring everything the haematologist said - which he didn't comment on. I was worried he might stop my prescription for fortnightly jabs - but he seems to have conveniently forgotten about that (and I forgot to bring the matter to his attention).

    Weekly jabs are working really well and I can happily take the dogs out for a 2km walkies twice a day without having to sleep for 24 hours with 4 paracetamol.

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