Need a little advice please

Hiya everyone I was hoping some one could share some light as my doctor laughed at me saying I didn't have pernicious anemia anymore....I'm confused I was diagnosed 4years ago with b12 pernicious anemia and I'm folate deficient to...I was originally told that I have to have injections every 8 weeks for the rest of my life and take folic acid tablets the same ..is the doctor right can you no longer have pernicious anemia anymore..? I don't find that my injections give me any relief at all from my symptoms ..I've been trying to inject more regular but still no joy..any advice please ☺️

26 Replies

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  • Did you have macrocytosis at the time of diagnosis? Many GPs do not understand (and often refuse to accept) that PA is an incurable auto-immune disease and that changes in the blood are but one symptom. 

    This can lead them to falsely declare you 'cured'. Someone better-informed than me will doubtless explain it better. In the meantime it may be worth posting whether you were tested positive for either anti-parietal cell or anti-intrinsic factor antibodies. If you tested positive for the latter congratulations are in order. Those blighters are notoriously difficult to detect but if you have them then you do indeed have classical pernicious anaemia and your doctor is an ass. He is an ass for laughing at you too, by the way.

    Finally, did you have a series of loading doses before being put on the eight-week maintenance regime? These would have been three a week for at least a fortnight. I ask because I was recently told by a young registrar that she had been working in another area where loading doses were never sanctioned. 

    I hope someone is able to give you a better answer - it does sound to me like another case of doctors being overly parsimonious in relation to B12 replacement therapy.

    Good luck and I hope you get some answers.

  • Thank you much for your reply Twench....yes I was tested for microcystosis I tested positive for anemia My doctor also told me at the time that I tested positive for anti-instrinsic factor antibodies...and told me I had b12 pernicious anemia ...hehe thank you I was upset that he laughed in my face when I went to see him about my b12 injections wanted to have more regular doses as my symptoms have been quite unbearable and not having any relief from the injections...lol definitely an ass then....☺️Thank you...yes I had the loading doses at first when I was diagnosed ...I know they also seem to fob you off when asking more questions about b12 when I said to the same doctor who later laughed in my face that some of the reason I had preeclampsia was that I was deficient in b12 ( I read it in an article) he said that was silly..

    Thank you Hun for the info you have given me..☺️

  • Your doctor is misinformed. 

    While you no longer have macrocytic anaemia (because the B12 jabs have fixed it) you still have the autoimmune gastric atrophy which means you can't absorb B12 (the positive anti-IF antibody test confirms that). That means that the anaemia will return if you don't have regular jabs for the rest of your life.

    Martyn Hooper wrote a blog post about this very topic - martynhooper.com/2015/09/24...

  • Thank you fbirder for your reply...I was confused as I say one doctor saying one thing then another saying the complete opposite being a GP you would assume that they atleast know what they are on about...obviously not..thank you I found the link very helpful.☺️

  • how can it be that post after post is about gp's having so little understanding about PA.  I have gastric problems and my gp was not at all interested when I asked her about them.

  • Have you seen a gastroenterologist? It may be worth asking for a referral.

    It's quite likely, if you have PA, that your stomach is producing too little, or no, stomach acid - achlorhydria. This can create gastric problems as protein is not digested properly, allowing it to pass into the lower gut where the bacteria make use of it by fermentation.

    Check some of the posts here about achlorhydria.

  • I have a lot of problems myself with acid reflux and a lot of bloatedness to...I had a endoscopy done only for them to say they couldn't find anything wrong ...at the moment I've been suffering serious bloated of the stomach and pains in the right side of my abdoman ...not to sure what's going on ...

  • Achlorhydria can produce symptoms very similar to excess acid. Try drinking about 40ml of lime juice or apple cider vinegar with every meal and see if that works.

  • Oh I'll look into that thank you so much ...I've got some apple cider vinegar in the cupboard I'll give it a try.. Thank you ☺️

  • For acv to do any good it it has to be organic which is cloudy, and not the supermarket bought one.  Only take a teaspoonful of acv with a glass of water.  Don't ask me where that line has come from and I don't know how to get rid of it.  lol

    Jo  xx

  • You must think I'm daft as no line has shown. 

    Jo  xx

  • Lol Jo don't worry I always do things like that myself...well if your daft I certainly am..ill go and get some organic acv today only have the shop bought one in the cupboard...😉

  • No, it doesn't need to be organic. It doesn't even need to be 'apple cider' vinegar. All it needs is to have acetic acid in it. I'm guessing that Apple cider vinegar tastes better than malt vinegar.

  • You need to dilute ACV in water. Sip it throughout your meal.

  • Thank you I have just bought some ill give it a try ...x

  • I had terrible tummy problems with P.A. After a lot of trouble and expense  a gastroenterologist did declare that  P.A. Patients have low or no stomach acid

    (Hypochlorhydria or Achlorhydria)  for which there is no treatment under the NHS. So after much online research I discovered a fantastic water-based probiotic,which has helped enormously.  The good bacteria help in digestion.and also keep out tha bad bacteria which form when there is little stomach acid. This what causes the bloating-and stomach ache.-The stomach contents fermenting instead of digesting. Together with acidy drinks--like organic cider Apple vinegar with"mother" Swedish bitters etc Also sauerkraut and natural yoghurt and kefir. If your stomach acid is seriously depleted Betaine Hydrochloric acid  + pepsin (capsules) would also help. Google to find out how to use them Many people use them successfully.  I do wish you all the best. It is awful how doctors are ignorant about P.A and B12 deficiency in general. Their arrogance never ceases to amaze me. 

    I have my health back now that I self inject---the best thing I ever did! All the very best to you. 

  • Wedgewood, what is the name of the good probiotic you found?

  • It is water-based and is called SYMPROVE. It has been researched by a gastroenterologist at Kings College in London. You can google it and find out more. It worked wonders for me .It is unfortunately expensive (about £18 for a 500ml bottle. They do have a special offer. I took it daily at first , full dose(60 ml)  for about 3 months. Then as I felt so well---no more tummy problems--I cut down to less than 1/2 dose daily. Now I take a small egg-cup full 2-3 times a week. I often forget as I have no symptoms! It needs to be kept in the fridge. Has no dairy or gluten, and comes in Mango& passion fruit flavour, or plain.  Hope this helps.Best wishes! 

  • Thank you. :)

  • That's great thank you I will google it....hopefully it'll work thank you so much for your reply and helpful advice I shall look into it...it is dreadful the bloating and the feeling uncomfortable all the time I feel pregnant...also my periods have stopped I'm having a vaginal ultrasound done next week so they can look at my womb and kidneys to see if anything else is going on...it's an ongoing battle with the doctors as you say they are extremely ignorant when it comes to PA AND B12..I really don't mind how much it is I just want this feeling to stop...thank you ..☺️

  • Before the current array of medical tests were available doctors were trained to recognise signs and symptoms to identify disease.  Unfortunately for us, with the advent of "medical advancement" this skill is being lost and my experience has been that doctors rely wholeheartedly on test results for diagnosis of PA this is hard science and also conveniently covers backs. Patients accounts are simply not relevant if they don't tally with test results and we get the brush off.  Maybe we should all request our PA medical records to establish how well symptoms we report are recorded and compare notes. Guidelines to doctors tell them that symptoms should be given more importance than test results, anyone think this is happening.

  • I would suggest you getting in touch with the Pernicious Anaemia Society - either by phone or e-mail.  They will be able to help you with your difficult and unhelpful GP.  Click onto the Logo at the top of the page and contact details will be revealed.

    Hope you receive the help you deserve....

  • Thank you Marz I will definitely get in touch with them ...☺️

  • Your doctor is ignorant, arrogant, negligent and needs educating.

    Moreover, he is putting your mental and physical health at risk.  I would email or write to the surgery with the BCSH guidelines and latest BMJ research document and, as already suggested, contact the PA Society.

  • Hi Polaris thank you for your reply...I've let the surgery know that I was upset with the fact he is unsympathetic a few times now....I think as you say the next stage would be for me to email the surgery or put a letter of complaint in with those guidelines ...☺️

  • I would like to say a big thank you to all of you that have given me advice....it means a lot ☺️

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