Horrendous Experience at Haematologist Appointment

Hi there, I am writing this having just returned from an awful experience at haematologist appt. Having been diagnosed with PA about 2 and a half years ago, after numerous visits to my GP I was having b12 injections 3 weekly (fortunate I know). However, my gp retired and a new gp has requested I see a haematologist to allow me to continue with 3 weekly injections. The new gp told me she doesn't believe in b12 injections. The haematologist wouldn't listen to anything I had to say. He said that needing injections more frequently than the guidelines of every 12 weeks was 'all in my head' and this was merely a placebo effect. When I told him about the improvement in my migraines, memory, tiredness, ibs etc he was extremely dismissive. He said that ibs wasn't a symptom of PA. He said too much b12 was not good to have, I explained that it was my understanding you couldn't overdose on b12 as the body excretes any surplus, again he just looked at me bordering disgust and explained that he was the consultant and he was giving me his advise!!

I left the hospital in floods of tears feeling totally exasperated at the lack of understanding and indeed knowledge of this so called specialist. On the back of this, he is going to write to my gp to confirm I should have 12 weekly injections, when I already know this doesn't work for me.

Any advise would be appreciated, sorry for the long post, just don't know really where to go from here.

Thanks.

13 Replies

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  • oh I am so so sorry - but sadly how familiar is this! No advice I am afraid, but wanted to reach out to you and give you a cyber hug, if that makes sense!!!

  • Thanks for the cyber hug - much needed!!

  • if you are a member of the PAS then I would suggest that you contact them, given that you have a diagnosis of PA they may be able to help you in dealing with your GP in a way that this forum can't.

    If you aren't a member then I would suggest that you consider joining

    pernicious-anaemia-society....

    martynhooper.com/2016/09/23...

  • yes I am a member, I will contact the PAS and see if they can help me.

    I have been reading some posts on here and I can see I am not alone with my frustration!

  • No not alone at all, after a year of banging my head against a wall, I started self injecting. I am still frustrated that I have to do this... but the alternative is losing 9 weeks out of every 12.

  • This is what I'm afraid of - I was in practically in my bed for 9 out of 12 weeks and yet a simple injection can help me cope with my normal life - not to say I don't still have off days but in general I can cope and isn't that what we all want?

    My friend is a nurse and I have asked her if I get the needles and b12 if she will show me how to self inject as I feel this is the only route left open to me.

  • Something similar happened to me, so I can really empathise. PA. patients often get symptoms similar to IBS , because they lack stomach acid which is produced by the parietal cells , the same cells which produce Intrinsic factor, destroyed by the antibodies that PA patients have. Lack of stomach acid ( hydrochloric acid) upsets the stomach flora , causing the bloating , pain etc , similar to IBS .A professor of gastroenterology told me this ( about the lack of stomach acid in PA patients, when I pressed for a test of my stomach acid ) When I asked what the treatment was , I was told there wasn't any. I found that a probiotic called Symprove got rid of my gut problem in no time . When I wrote to the gastroenterologist, he told me that he could not prescribe probiotics .So probiotics might help your gut problems . Cheapest way? Make your own organic sauerkraut, and eat a few spoonfuls daily ( google for recipe)

    As regards getting more regular injections than the bog- standard 3 monthly , I gave up in the end , after suggestions of hypochondria etc , and now self- inject . It easy and cheap . My numb feet (" ideopathic" according to my doctor , even after diagnosis obtained by going privately to a Nuffield Hospital GP) have recovered to a certain degree , now only burn like hell, but I can feel them , and I can continue to drive.

    Good that you have a nurse to help you inject . But it's amazing how much help you can get here . I use a very thin needle to inject -25 gauge . Never feel a thing - magic ! But yes , do try approaching the PAS. They are marvellous . When this happened to me I knew nothing about the society , and I was truly desperate .

    Best wishes in your quest for better health .

  • Thankyou so much for your reply that's very helpful and interesting- a bit daunting to think of self injecting but feel this is my only option now.

    Will definitely look on here as seems so much information from people who actually understand.

  • I'm so sorry you had to through this too - it's just terrible! It's unbelievable they get paid so much and are given social respect for causing such suffering due to ignorance as a result of arrogance.

    If you've tried other options and decide you have to self inject...

    Don't worry: the thought of it is far, far worse than actually doing it and quality products are easy and relatively inexpensive to source.

    Think of all the positives: you are in control of your destiny and not at the mercy of anyone else, you can fit your doses to your demands and self injecting is much better than having a nurse do it. It's also much less painful than seeing ignorant Drs!

    Please also make sure you get enough of the supporting supplements that are required to make the extra B12 work.

    For more information, including sources of supplies, you could look up my profile by double clicking on my name and see my post "My Experiences".

    If you have any other questions we'll try to help you here.

    Now off to do my daily jab and, as a result, go to work! Good luck!

  • Thank you I will look up your advise and am actually feeling more positive today thinking that I can be in control of when I need injections and supplements and not these so called professionals who really should be helping us not making matters worse.

    Like you I have been able to work since having my injections more frequently and I don't want to go down that road of feeling so utterly exhausted.

    I think I will be spending time today sourcing the b12 and needles etc to help me on my way to self injecting.

    Many thanks.

  • Sorry to hear about your horrible experience but sadly not surprised based on some of my own experiences. I never got to see a haematologist despite low b12 and numerous neuro symptoms and I eventually resorted to self treatment.

    Have you considered writing a letter containing all the evidence that supports your case eg blood results, lists of symptoms, quotes from UK b12 documents eg BSH Cobalamin and Folate Guidelines.

    Link about writing letters

    b12deficiency.info/b12-writ...

    BSH cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/ click on box that syas "Diagnosis of b12 and Folate Deficiency" should be on page 3 of listed guidelines.

    Flowchart in BSh Cobalamin guidelines. It

    stichtingb12tekort.nl/weten...

    I found it helpful to read fbirder 's summary of mainly UK b12 documents. Link to summary in third pinned post(last link in list).

    Lists of b12 symptoms

    I gave PAS list to Gps with all my symptoms ticked. I also gave them a copy of BSH Cobalamin guidelines and a copy of Martyn Hooper's latest book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    pernicious-anaemia-society.... click on Symptoms Checklist

    b12deficiency.info/signs-an...

    Neuro Symptoms

    If you have neuro symptoms you should at least be getting injections every 2 months. Does GP and haematlogist know about any neuro symptoms you have? eg tingling , pins and needles, balance issues, tinnitus, memory problems, brain fog and many more...have a look at symptoms lists for other neuro symptoms.

    "The haematologist wouldn't listen to anything I had to say. He said that needing injections more frequently than the guidelines of every 12 weeks "

    If you do have neuro symptoms I'm shocked that the haematologist said the guidelines say every 12 weeks. They definitely say every 8 weeks if you have neurological symptoms.

    All doctors including haematologists have access to the BNF (British national formulary)..doctors book showing what drugs can be prescribed.

    The info for treatment of PA with hydroxycobalamin is in Chapter 9 section 1.2. The following link contains the info or perhaps teh haemotologist can look in his own copy of the BNF. it's possible to get copies of the BNF from a popular online retailer if you need one. If you have neuro symptoms I don't think the haematologist will be able to argue against injections every 2 months especially if he has the BNF page on hydroxycobalamin under his nose. Your GP might be interested in knowing that UK PA/B12 defic patients with neuro symptoms should have injections every 2 months.

    evidence.nhs.uk/formulary/b...

    The BSH Cobalamin and Folate guidelines also mention about aquarter through document that treatment for B12 deficiency should be according to the BNF.

    If you have neuro symptoms and can't get the right treatment, PAS may be able to help and these links may be helpful

    b12deficiency.info/b12-writ...

    citizensadvice.org.uk/healt...

    HDA patient care trust

    A UK charity that offers free second opinions on diagnoses and treatment.

    hdapatientcaretrust.com/

    Have you been able to speak to PAS?

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Stories on Martyn Hooper's blog about how PAS have helped.

    martynhooper.com/2016/09/23...

  • Thanks for the info I will definitely have a look at the links you sent.

    I feel very disheartened with the medical profession and am of the opinion that writing a letter won't ultimately help me as I feel they are ignorant and hiding behind the argument that 12 weekly injections is what the guidelines recommend. The haematologist that I visited spouted this more times than anything during our meeting.

    Self injecting seems the only viable option and then I will be in control and not feel like I am begging the GPs for something my body obviously needs!

  • Just to let you know I've added some more to my previous response about UK B12 treatment for people wioth b12 deficiency with neuro symptoms.

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