Should i bother with colonoscopy and endoscopy? What value will any diagnosis add given the poor standard of nhs 'treatment'?

Hi all

I have Hashimoto's Thyroiditus, Pernicious Anaemia, achlorydia, neutropeania - i manage all these myself as NHS will either not prescribe what i need, or not in sufficient doses.

I am alot better since self medicating.

I have had chronic gastric issues since 06 - same time as Hashi diagnosis. NHS misdiagnosed as IBS and left me to own devices. Fast forward: serious malabsorption issues and a host of symptoms. Two private specialists are almost sure it's coeliac. NHS refused to test initially and i had already stopped gluten by time they begrudgingly did blood tesTs TGA and IGA.

Now i have finally been referred to an NHS gastro. My private GP told me years ago he was the best and it's been a battle to see him on the nhs. He wants to do these procedures which mean eating gluten ie being off sick and also using 2 drugs i had a very bad reaction to in Jan during surgery (only just recovered) - Fentanyl and Midazolam.

I nearly lost my job last year due to sickness (thyroid) which led to capability issues (reduced hours most of the year, career really suffered,etc)

I cannot bear to have to go sick again for around 3 months. I have exhausted my sick leave so would be on half pay and will struggle to pay mortgage.

I feel sort of better off gluten, but have still have episodes so don't really know what's what.

I am leaning towards telling them to shove the procedures as it is not worth risking my career and the tension that will undoubtedly arise with senior management. Plus it's stressful and depressing being sick as i live alone and am totally self sufficient, no support.

NHS doesnt do much for coeliacs beyond a few g-free products from what a i can tell - i know they dont monitor malabsorption, etc. And if it's IBD i hear they do a poor job on that too

So final question: what value will these procedures add? Are they worth the risk and sacrifice?

(before anyone asks, no - we have a crap OH dept and i previously took out a grievance against them).

4 Replies

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  • BlueDaffodil

    The NHS has a lots of faults but they do need to follow NICE guidelines so:

    - anyone with Pernicious Anaemia should receive 3 mthly B12 injections >>if you are not receiving them then complain to your PCT (despite the system now changing due to cuts) and also book and see a different GP to discuss this - you will not be able to self medicate to a good enough level to manage this condition

    - your problems are classic - my Mother has the same issues as you atrophic (auto-immune gastritis) leads to anti-bodies to intrinsic factor, leads to Pernicious Anaemia. Having a thyroid problem means you're 3 times more likely to have Coeliac Disease than someone who doesn't

    - Despite your valid concerns about managing your health on a gluten free challenge I would urge you to follow through with the tests. Often the NHS will put you under completely so you can have the endo and colonoscopy at the same time (which is often an advantage).

    - I recommend you do have these done as your conditions could mean there is more going going on in your body than you are aware. Only by these procedures can consultants view your insides and take the correct biopsies. For example like you my Mum was fobbed off with 'IBS' for years. However, after the PA was discovered it was by chance her consultant though to do an endo and a colonoscopy. They then took more specific biopsies and it was discovered she had a rare NET tumour. If these are caught early they can be managed as they are slow growing if left too late then the odds are very poor. So given your history and that NETs are associated with the conditions you have it's well worth having the tests to check all is well, they'll also check whether you have Coeliac or any form of colitis which could be causing problems.

    - The downside is the gluten challenge. You can ask to see a dietitian before or talk to your GP about the minimum amount of gluten you can eat. My GP was very sympathetic to how ill I felt before my endo and said I should eat gluten but could avoid bread and pasta. So I did - instead I ate rye crackers, soy sauce, beer etc. Which made the symptoms more manageable before the test in a new job. Find out from your GP what the minimum is to be diagnosed. As long as you are eating some regular gluten 6 weeks before the biopsies if you are a coeliac then the villi should be flattened. For example you can eat more gluten at the weekend and manage the effects when you're at work with imodium or similar over the counter meds (always check with the pharmacist).

    - Although frustrating talking to HR & your manager to explain that you maybe slightly ill until you are tested may help them understand it's not a long term situation. All businesses have a duty of care to oversee their staff are well and not discriminate against them.

    - If you can effectively manage any ill effects of the gluten challenge thru meds then I really think you should have the tests

    - any undiagnosed conditions are dangerous

    - Yes the NHS are meant to monitor all Coeliacs every 6mths in the first year then every year - if they don't then we all have a duty to speak up for ourselves and make sure they run annual tests on us

    - having the tests isn't about 'free prescriptions' it's about solving your health puzzle, getting a diagnosis, follow up treatment and having peace of mind that nothing else is going on

    As you say yourself,

    "I feel sort of better off gluten, but have still have episodes so don't really know what's what."

    Having the tests will confirm either way what is what.

  • My point is i have a bad reaction to GA as well as midazolam and fentanyl - it took me 3 months to recover from these drugs just recently. I will be on half pay while sick and will struggle with mortgage (have exhausted all sick leave). Live alone and v difficult to cope as the symptoms from those drugs and/or gluten are are hell: CF, vertigo, tinnitus, brain fog. I am sick of being sick. It's not 'slightly ill' but total debilitation. I literally cannot function

    i need b12 monthly to feel good - already complained and tried diff GPs , even went to Ombudsman - no luck so inject myself now with own product. No one is accountable in the NHS, not the PCT (who told me they do NOT deal with complaints, not the Dept of Health, no one - you can try Ombudsman but they only look at 300 out 15000 they receive annually)

    BTW i am actually self medicating to appropriate levels as proved by tests. I inject as often as i need to.

    You say they need to follow nice guidelines but they dont - that is part of my complaint to ombudsman. They have breached them several times in my case.

    My Gp is useless so i wouldnt ask her anything. Frankly i know more than she does and she's very threatened by me as i keep proving her wrong on medical facts.

    My issues are all long term (not temp as you suggest) and my employer knows that. I don't need to disclose details to them - only the effect of my diseases on my quality of life - i have a Reasonable Adjustment under the Equality Act in that i may attend med apps during work time without having to work in the hours. They know I have multiple Chronic diseases. You CAN still be dismissed if you have been given RAs and still don't perform, eg by never being there or always being too sick to work properly ie becoming incapable of fulfilling the role. It then becomes a capability issue regardless of disability. It has been VERY difficult with my employer because regardless of their obligations under the equality act, you still get treated unfavourably in terms of promotion, etc but of course it's v difficult to prove.

    You hit the nail on the head - the nhs does not do anything for coeliac, they monitor - but their ranges are so wide they do nothing till too late. And even then they do nothing

    They missed my P anaemia and reduced bone density despite me going on for years. Ignored my iron def anaemia. Useless all round. Have tried different GPs, all are useless (Lambeth).

    I've even given them written recommendations from private specialists about B12 dosing, my need for IV iron, their strong view i have achlorydia/panc exocrine insufficiency, coeliac, neutropaenia , a whole list - and they ignore everything and refuse to follow recommendations. They are untouchable and they know it or they wound't get away with mismanaging taxpayers' health.

    My point is a diagnosis doesnt offer value in the sense that the NHS does not offer reasonable service levels in managing these conditions. They fail in managing my other diseases which i now manage myself. Whatever their diagnosis, i will still be managing everything myself - i dont think it will change the way i am managing it as i already so all i can_ inject with a wide range of whatever vits/mins i can find, avoid gluten, take NDT for Hashimotos (ditched the poisonous levo) and so on.

    Bottom line is i cannot face another stint of sickness on my own (was off sick most last year and several months this year already) - it's incredibly depressing without support and then the issues it will cause at work - it's v stressful trying to get to grips with work everytime i return from sick leave as i work in a fast moving, challenging environment

    Really value your detailed input though - thanks so much, really appreciate it

  • hi bluedaffodil,

    It's great that you're finally under the care of a gastroenterologist as I'm convinced that sorting out gut issues is key to getting well. I recently got referred and am exploring some of the same things (though I'm not as badly off as you are.) I hope your gastroenterologist is as good as you say he is.

    The gastroscopy doesn't need sedation - you can have it just with the anaethetic throat spray. I recently had one and the procedure went really smoothly. That's the good news. However, I had a pretty bad time on the gluten challenge and what I think is a delayed reaction to the endoscopy itself - a nasty throat infection that has been going on for about 12 weeks, and is still lingering. No procedure is without risks, I suppose.

    I'm not coeliac but I've still been advised to follow the gluten free diet because of my bad reaction to gluten. So in that sense, the endoscopy changed nothing and there is a part of me that wishes I hadn't bothered. I'm not sure that an official diagnosis of coeliac helps very much. The gastroenterologist probably wants everything nice and neat and tidy by ruling it in or out, but that makes no difference to you.

    I suppose other things might turn up on a gastroscopy, such as ulcers or gastritis, so if you were suspicious that you had something else wrong then maybe that would be a reason for going ahead with it. Since these things aren't related to gluten, then you wouldn't need to be eating it. Or you might consider doing the gastroscopy, just in case you're one of the unfortunate people who has refractory coeliac disease (still have villious atrophy even on the gluten-free diet).

    The other condition they look for is inflammatory bowel disease (IBD) and I think that's where the colonscopy comes in. Since this is not condition triggered by gluten, you wouldn't need to be eating gluten in order to have it done. BUT I think this DOES need sedation, and is a much more risky procedure with bowel perforations in 1 in 1000 cases.

    I've just starting to look into things and colonscopy isn't the only option for investigating IBD. There seem to be various other options involving x-rays and barium and MRI. There are some non-invasive tests that can be done to look for problems. Fecal calprotectin can be used as a screening test to see who would benefit a colonscopy and I've just submitted one. There might be other screening tests too.

    I've also learned that Crohn's disease can be treated by diet, but ulcerative colitis can't, apparently.

    Hope this helps you.

  • They want to do both on the same day - i cannot have the spray either as it affects white cells and i have neatropaenia.

    It took me 3 months to recover from fentanyl and midazolam, i just cannot go through that again.

    In any case, the atmosphere at work is very tense due to cuts and restructuring and this is not a good time for me to negotiate being paid despite having exhausted all paid sick leave.

    What is typical is the lack of info and comms; pre assessment is too late for me - on the day is too late.

    I actually didn't take to the gastro. Been trying to call for info and to discuss my concerns with some one - but no luck.

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