Should i have gastroscopy and colonoscopy? What value will they add, given poor standard of NHS 'treatment'?

Hi all

Have asked on coeliac forum, but wanted views from 'thyroid people' too:

I have Hashimoto's Thyroiditus, Pernicious Anaemia, achlorydia, neutropaenia, iron def anaemia - 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).

[galathea]

You.ve more or less answered your own question.... You know itS a waste of time and its going to mess things up for months. Have the Nhs done any other form of monitoring? I would only accept the invasive procedure when all other avenues and tests are exhausted aNd the symptoms are not resolved.

If I was you I would trust my instincts. And have you got enough stomach acid? It doesn't sound like you have.

Xx g

[Hidden]

Hi. I suspected that I am coeliac. I had test done last year ( I can't remember which of the 2). Test came back negative. I was already off gluten for few weaks before the test. I raised this issue with gastroenterologist and he said that this test is very sensitive and that coeliac antibodies stay in your blood for two years even if you are off gluten so.. It might be not worth to go through pain again. I didn't , I stay away from gluten since I developed sensitivity.

Wish you good luck.

E xx

[Hidden]

No i dont have enough stomach acid but gp not interested, like i said - i manage everything myself. No other monitoring no - they do nothing unless you kick up a fuss and i am tired of the NHS sapping my energy. You fight for specialist referrals and then these idiot NHS gps refuse to follow the specialist recommendations anyway

The TGA came back neg after i was off gluten for 6 -sh months, so yes i have checked that

I think the fact they are willing to use contra indicated drugs on me after my last bad reaction says it all

[galathea in reply to Hidden]

So, you are using betaine hcl with every meal? If not, why not?

And have you decided for or against the tests? My vote is a resounding no, donT put yourself through it.

G

[Jackie]

Hi A gastroscoy and colonoscopy are very simple but good tests. I used to have to have them yearly but now not safe for me to have any investigations etc. With them both they biopsy any thing at all suspicious, I do not mean just cancer but things like U.C etc also H. P bug, which I have not a clue how to spell! This is routine and very important if it has been suggested to you. These days nothing is done ( costs) that is not considered to be needed. There is nothing to it, the only slightly difficult bit is the fasting and preps before a colonoscopy. Barium etc you will not be able to have biopsies, that is the most import thing.There is also a very good specialised gastroscopy done if really needed by a radiologist for the pancreas, that with the Faecal Elastase test for enzymes is fairly conclusive for results.There is nothing to replace the scopes as unique in what they show. Both done together.

Best wishes,

Jackie

[Claire17]

As a person who has Crohn's disease and now an under active thyroid I would recommend you have the procedures. Crohn's can affect anywhere from your mouth through to your bottom. One thing that is very common is malabsorption as well as it being a crohnic immune disease. As others have said at least you would get a diagnosis. And it is not for anyone who is not a dr to say not to bother!

[Hidden]

I know i have malabsorption - dont need these procedures to prove it. Blood tests show it. And the nhs does NOTHING for my malabsorption, I inject myself with whatever i can get. So the tests dont add value from that perspective,.

Yes i take my own enzymes and HCL but the point is i pay for EVERYTHING as a result on NHS failures: my own NDT, my own injections for p anaemia, etc etc

I do not think i am going to be able to go through with these procedures, esp something down my throat: and my main point is - it took me 3 months top recover from fentanyl and midazolam used in an op in Jan. My employer is getting fed up. Last year i was sick all year with thyroid isuses - i nearly lost my job on capability grounds.

My point is that a diagnosis does not mean NHS will offer appropriate treatment: they have not done for any of my other diseases; in fact they didnt even diagnose any of them - i did. And they've mismanaged them all, so i now manage them myself

Jackie - you say there is nothing to it - it means me being sick for several months. First from eating gluten 2 weeks prior, then the contra indicated drugs - the symptoms i get are v debilitating (CF, vertigo,, tinnitus, etc) and apart from missing more work, i live alone so have no one to help with anything

Also i have exhausted all sick leave so will be on half pay while sick, i will struggle with mortgage, etc

Appreciate the opinions, think i will give it a miss.

[Jackie in reply to Hidden]

Hi Just found your reply back on the main site. There is a simple stool test for malabsorption. Faecal Elastase, if it is low,( idiot proof test )Then you need replacement enzymes, very safe you can buy them Holland and Barratt or script from GP after positive test., some people just buy them. However, no use, unless you take them 20mins before food.This is a common problem with autoimmune diseases, especially Caeliac disease. You may quite likely develop diabetes, regardless of anything else, as hormonal and autoimmune disease, you need regular tests, You do not need to be overweight etc. The symptoms to start with very like thyroid disease.Scopes only involve sedatives, not other drugs. I can understand how you feel, the NHS is often not adequate. in spite of all my co morbidities, I wish I could still have scopes, I need them but no choice.

I hope things get better for you.

Jackie

[Angel_of_the_North]

No one even mentioned to me about eating gluten again (which i wouldn't have done) before having the tests. I expect the GP didn't know. The prep was a breeze but the procedure really hurt and I couldn't digest anything properly for weeks and everything just went straight through me. Still haven't had the results! I'm not as ill as you, so I've managed to make things a lot better by taking high doses of two types of probiotic (not the ones from H&B!), plus l'glutamine.

I found these two sites very helpful:

listentoyourgut.com/

gutsense.org/

Although the second one is pretty controversial.

I also take Hcl with my large meals and milk thistle with any fats (was already doing this before procedure).

So, in many ways, being totally upset by the colonoscopy was a good thing as it made me reevaluate everything and, after cleaning out everything, is allowing me to repopulate with good bacteria. Not that I should have had anything bad since I haven't eaten sweets, refined grains or anything "bad" for decades. Cutting the amount of fibre has helped, too. But I ate a lot.

[Hidden]

My useless gp wont even do the fecal test: even after a private specialist strongly suggested i had it. They answer to no one so can get away with their uselessness.

The gastro is doing it but he still recommends the other procedures that i just cannot face.

Angel of the North - your GP sounds as useless as mine. I cannot believe you went through all that - possibly for nothing as a good private specialist told me ages ago you must eat gluten for several weeks prior to damage the villi again - that's what they are looking for

The 3 day liquid diet thing also bothers me as i need to eat every hour or so or i feel really ill

I think i will fork out and go and see a private GP i like and see if he thinks it worth it. Wouldn't bother discussing with nhs Dr Useless.

To be clear - it is Midazolam (the sedative) and fentanyl (painkiller) that are contra indicated with thyroid disease and to which i had a bad reaction that lasted 3 months.

So Jackie when you say 'only' sedatives - the fact is it made me ill for months

Appreciate everyone taking the time to comment