MALABSORPTION - B12 DEFICIENCY

Hello Hamster

Saw a gastroenterologist privately today. Pretty devastating really – my heart sank when his first words were, “what made you think your problem was malabsorption” I said I had a Vagotomy and a Jejunostomy in 1973. I tried to give him a list of my symptoms but not interested - and it brought an accusation of bombarding him with too much information! but I would not have remembered a lot of it (memory fog being one of my symptoms). He did not take any notes and there was no structure to the consultation at all.

Told me tests results all in the normal range – I questioned normal range at 350 against the British Medical Journal Best Practice deemed as subtle, and that I understood 500 was the figure thought for a healthy person. Did not agree – I said I couldn’t understand why an iron/ferritin test & Vit D wasn’t done and he said it wasn’t important. He also dwelt on my thyroid test being normal even though I carefully explained how it wasn't.. He didn’t agree with anything I said, he told me there was not a doctor who would give me B12 injections when results within normal range. I said I am losing my hair, very important to a woman, and why was I was so chronically tired, every movement hurts with arms and legs aching so much and no strength. I produced my sublingual spray but not interested he didn’t even look at it. I explained that within a few days of taking this (also telling him I was taking a much higher dose than recommended) I was at least back on my feet again, and if I wasn’t deficient how had it helped - nothing!!.

He honed in on doing tests for bowel disease and an endoscopy, which is what he specialises in (I looked him up before I went). He wanted to do a Colonoscopy. Tearfully I said no (which surprised him) I was informed of the consequences of ignoring having a Colonoscopy (I explained I had one a few years back - not a nice procedure and it absolutely terrifies me because of what happened) and I said as you can see I had an Endoscopy for the terrible stomach pains I experience intermittently (GPs thought it could be Gall Stones but nothing ever shows up) even though its not that long since I had one he still wanted to do another!! He then offered me an MRI scan, I was in tears when I explained I could not afford any of this privately. He said they could be done on the NHS, I still said no. I was so upset that he was ignoring my malabsorption. Previously he had warned me of the expense of doing blood tests - but perhaps to justify what will be a hefty fee, he said he would write to my doctor suggesting they do a Vitamin D test and a Coeliac test (which he had already been told three times had been done last year by the GP. I was told that doctors cannot pluck out of the air a cure if there is none. Tearful and completely deflated, I thanked him and left.

What a terrible demeaning experience and waste of money. Why did my GP send me to someone who clearly knew nothing about malabsorption and B12 deficiency – perhaps he was “just plucked out of the air”?. All this Consultant did was exactly what my GP had done, quickly scanned through the test results and took no notice of a patient sitting there presenting with a medical history and just about every symptom you can get with a malabsorption problem. Cowed and demoralised - I will have to continue with self-medication, but the consequences of my symptoms being ignored doesn’t bear thinking about..

17 Replies

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  • ((( Mistral )))

    I'm so sorry your consultation was so awful. One wonders why some of these so called specialists ever thought they were cut out for healing sick people.

    I can't offer any help or insight but I'm sure Hampster will be able to point you in the right direction when she sees your post.

  • I'm so sorry, this happens all too often and it really saddens me :(

    I take it you have already 'scoured' the pernicious anaemia society forum?

    pernicious-anaemia-society....

  • When I worked with pre-clinical medical students the department went to great lengths to teach them that you have to look at the body as a whole. You can't continually ignore the nervous system for instance because you find it difficult to learn. We even re-jigged the exam format so that every subject to date was covered in such a way they had to answer a question on everything. Tutorial groups were moved around so you got a better balanced input. I can only think that things go pear shaped when the clinicians step in and teach them the 'important' patter. Everyone at that level doesn't seem able to think outside the box, the very thing we strove to overcome.

  • Hi A lot of Gastros have a problem, years of them! if you are not happy, do not hesitate have a new referral, one that you have chosen by careful research. Standard first tests are blood, colonoscopy, gastroscopy and ultr a sound. The n if nothing shows, further tests.Make sure he does a Faecal Elastase test, for pancreatic enzymes, commonly the problem, test fool proof, home specific stool test and replacement enzymes.With this and gall stones, lots of weight loss. gall bladder stones do not always snow on ultra sound, depends how they are lying, if just sludge, only a good radiologist will find them.

    A lot of what you mention are Endo , not Gastro. eg the only specialist allowed to take care are Endos.

    Best wishes,

    Jackie

  • What an arse :o( sorry but he is !!

  • do persevere look up the CV of the consultant to see... how long he has been practising and get a second option do you know another person who has been to a gastro man who can recommend ....do you have diverticular problems? it took 2 years for me to find out that I had, suffering with most excruciating pains docs useless , .................. found through a colonoscopy. I have to watch my diet now and it is very severe and I have a fistula now through a burst abscess....,,,,,,,,,,,,,,.please try to find a good specialist to listen too you good luck ....

  • What can I say? Been there ! Had the same horrible demeaning consultation - except with an Endo. Same ignoring of symptoms same carelessness. Where do they find these people ? It's a bloody scandal.

  • Sorry to hear that you've had a bad experience. I have had dreadful experiences with my endo, in fact my GP wrote to him regarding this. RESULT???? He won't see me anymore and suggests that I stay with my GP!

  • Hi Mistral.

    My heart goes out to all who continue to go unmedicted, undiagnosed, treated as faceless interruptions to the specialists day. We are the reason they go to work and have a job.

    I have been there and currently my medication was stopped by a junior registra who looked purely and solely at my TSH .42 - .57 and nothing else including the wreck of the body sat in front of him. Low cortisol, high liver ALT, thyroid effecting heart , low Vit D blah blah! I am self medicating and my GP is aware but doing nothing apart from a BP 24 hr test ??? until I get to see Dr Peatfield I am in limbo ! It is so hard to be positive but we must try and hopefully someone on here may offer some advise and glimour of hope ! Shame those paid to do so fail us at so many levels .

  • So sorry you had this appalling experience. Wonder if you saw the same proctologist and gastroenterologist that I saw a few years ago. They both said, in the same words in the same order, with the same sing-song intonation: "It does't matter what you eat, you can eat what you like, it will make no difference!" I immediately thought it was part of their Christmas show where they send up their patients, OR alternatively they were drumming up business to make sure they were never unemployed. Take your pick!

    I now look after myself, including radically changing my diet. Hypothyroid patients have low levels of hydrochloric acid in their stomachs which affects the digestion. GPs regularly prescribe proton pump inhibitors (expensive and addictive) which make things worse (excess and insufficient stomach acid have the same symptoms). You could try Betaine HCL which is freely available for less than a fiver. This may improve your digestion and help you absorb B12 from your diet. Please do some reading first: we're all the same and we're all different and what suits one may not suit you.

  • I wish I had some advice but I had to post because reading your experience brought tears to my eyes. What an awful time you had with this "doctor". I second ThyroidHell...an arse he is.

  • Hello everybody

    You have no idea what you have all done for me. None of us are alone, are we? So many of you have had virtually identical experiences, and pretty tough times, but you have taken time out to commiserate with me, but also made me laugh, a great tonic in itself. Thank you so much; and thank you to those of you who have experience regarding the medical fraternity, I am so grateful. I know it always seems we have had bad experiences, but there are some good doctors out there, we just have to dig a little deeper these days to find them.

    I will do what you say, I will start again, and try and find someone myself through careful and diligent investigation (never again will I rely on a GP referral) - word of mouth is always a good starting point and a good recommendation. Hamster gave me the name of a GP who has an excellent reputation so I am going to start there.

    Once again many thanks, and if I find a glimmer of success I will let you know.

    Mistral

  • Can only say how sad it was reading your post. Have you considered trying B12 patches - from amazon. It should eliminate the malabsorption issue. The extra strong ones contain all the B's and D from memory. It may just help. Not sure what thyroid treatment you are on ? I am currently using one patch a week and I am happy.

    I too have had endless operations for TB in the gut and Crohns starting some 40 years ago and not once was I given advice regarding B12 injections as I no longer have a Terminal Ileum where most of the B12 is absorbed. There is some info on my Profile ! hampster1 has been a huge supply of knowledge and support.

    Hope you soon feel better ....

  • Hello Marz

    Thank you for your post and for that very useful bit of advice, I will have a look at the B12 patches on Amazon, as you say they may be what I am looking for as it will eliminate the malabsorption issue. I am on 100 mcg of Levothyroxine, still taking it an hour before I have breakfast to try and help 'absorption'.

    Kind regards

    Mistral

  • Gawd so sorry you've experienced this Mistral. I wish I could say it was uncommon but as you can see from other's posts it's not. It's particularly unforgiving for a Gastro to be this ignorant, surely they are the ones that should be aware that gastric surgery can have serious consequences regarding absorption?

    I'd be tempted not to pay for this utterly useless and ignorant consultation. There's an American on another forum I'm on who told the story of a Specialist he went to see (obviously they pay for everything over there, either privately or via insurance). As soon as he sat down the Specialist started sprouting a load of old @!@!. The patient started laughing. The Specialist asked "what are you laughing at?" The patient said "you", got up and left, with an aside over his shoulder "and don't even think about billing me for this". I love this story, but sadly think we'd probably all be sectioned if we went round doing this in the UK.

    Please do try and get in touch with Dr Chandy, either through the B12d.org website email address, or by phoning his practice in Horden. It may take a while to get a response because they're very busy, but please persevere if you can.

    Also if you phone the PAS office they do keep a list of sympathetic doctors/specialists, there may be someone near you. Unfortunately it's a very short list.

    pernicious-anaemia-society....

    H x

  • Hello Hamster

    You have been absolutely ace, so many thanks. With the information you have passed on to me I will have the guts to pull myself up by my bootlaces and start again.

    You have made me laugh about what that American did - wish I had the guts to do that - talk about doing things a bit differently, but I can imagine that some American's who would do that.

    My daughter said exactly what you said I shouldn't have to pay. I only remembered yesterday that on Monday after the consultation (I use the word loosely), I was supposed to go back to the second reception desk and fill in paperwork - and I didn't. I had already 'booked' in at the first reception' and there was nothing to say you had to book in again at what turned out to be a second reception - near my appointment time I knocked on this window and one of the two women who had seen me come in and just ignored me (well at least you felt at home as it was just like the NHS crowded, and unfriendly with the ethos of just ignore the patient) said I would need to fill in some paperwork, unfortunately at the same time the consultant called me in. She shouted after me 'you will come back and do the paperwork?' Unfortunately I was so upset I just forgot. I did try to pay as I left (at the first reception) but the woman said we will invoice you. If this doctor has any integrity he will not bill me (but I bet he does).

    Although I was upset, but by the time I got home I wasn't too bade as I thought about all the similar posts of symptoms being ignored in the B12d site and the Pernicious Anaemia Site - sadly there ARE a lot of us about and growing.

    With grateful thanks

    Mistral

    .

  • I thought you might like to know I WAS "billed" for the consultation - the princely sum of £150 for less than half an hour for absolutely nothing. It is notable that I have not been contacted by my GP to have a vitamin D test either, but I am sure you are all like me not surprised. I have paid the bill and learnt a very expensive lesson, do not rely on your GP to ensure you get a good specialist, do your own homework.

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