Advice on how to get an Upper Endoscopy

[Shadowlord900]

TLDR Version: Losing weight and currently on Proton Pump Inhibitors. GP and even private doctors not willing to give me an endoscopy despite what I've told them. Any advice on how to convince them to give me one (including lying) would be appreciated.

Since March I've been losing weight easier than usual. When I went to a private health clinic, the clinician recommended I eat dried fruit and nuts so I've been eating lots of that. It did help until mid August when I got gastroesophageal reflux disease and now I'm finding it more difficult to maintain my weight. Not long after that I realized from a friend that I might have been having too much fibre so I have currently cut out the dried fruit and nuts. (I know having lots of fibre is supposed to help with GERD, but I'm finding I'm getting less chest pain after dropping the dried fruit and nuts.)

I'm concerned I may have something cancerous and when I've told an A&E doctor as well as a private doctor what was going on, they recommended I try to get an upper endoscopy. Despite seeing two different private doctors about getting an endoscopy neither of them were willing to do it (prehaps I should have further pushed I had the money and was willing to pay). The first private doctor I saw recommend I try to get it through my GP, and the second one said I was both too young (I'm 32) and that my symptoms weren't severe enough to warrant an endoscopy.

The one doctor from my GP was unwilling to give me an endoscopy despite explaining to him that two different doctors recommended I get it one and instead he just upped my Omeprazole dose. He wouldn't even let me try a different kind of medication to see if that would help and that was about a month ago.

Well now two days ago I decided I would lye about my symptoms to make them sound worse than they actually are, as well as how much Omeprazole I was taking and thankfully I saw a different doctor who has at least put me on different medication now (which was Lansoprazole). Admittedly I do know it can take a few days for Proton Pump Inhibitors to take effect but I'm still convinced I'm losing weight easier than I should, despite trying to eat a lot while avoiding anything too fatty or spicy. I'm gonna try setting up another appointment for 2 weeks. If I'm feeling like the Lansoprazole still isn't helping after a week I'm thinking of just not gonna go out of my way of eating lots and just let my weight drop, and hoping that as well as lying about my symptoms will finally convince them to give me an endoscopy.

Any advice on what else I could do or say to help convince them to give me an endoscopy would be greatly appreciated... And sorry for the long wall of text. ;>____>

 

[whywere]

Now NOT to scare you at all, but here is my experience. I had ulcers and had numerous upper endos and got the damn things healed.

Now I was still having pain and they did lots of screens and BANG, I had gall bladder cancer. If they would have found it about a month later, I would have been terminal.

I would really recommend an upper if for no other reason than safe than sorry.

At 66 plus years I have found that I over all listen to myself. I am the only one with skin in the game of my life and no medical person ever can say this.

Best of luck to you and I will say a prayer for you.

Sending huge hugs, love and kindness and will keep you in my heart. sorry, but I wear my heart on my sleeve.

Walter

 

[Shadowlord900]

Now NOT to scare you at all, but here is my experience. I had ulcers and had numerous upper endos and got the damn things healed.

Now I was still having pain and they did lots of screens and BANG, I had gall bladder cancer. If they would have found it about a month later, I would have been terminal.

I would really recommend an upper if for no other reason than safe than sorry.

At 66 plus years I have found that I over all listen to myself. I am the only one with skin in the game of my life and no medical person ever can say this.

Best of luck to you and I will say a prayer for you.

Sending huge hugs, love and kindness and will keep you in my heart. sorry, but I wear my heart on my sleeve.

Walter

Can you remember what screen you got that detected you had gall bladder cancer? If I do manage to get an endoscopy and they don't find anything, I might ask them about screening for gall bladder cancer.

 

[whywere]

Can you remember what screen you got that detected you had gall bladder cancer? If I do manage to get an endoscopy and they don't find anything, I might ask them about screening for gall bladder cancer.

HI!
Yes, I remember, and I love helping you stay safe.

I had 3 screens, but I do not remember in which order they were. They were MRI, CT scan and Ultrasound.

I will never in my life forget when the lady doctor came in, I was in a room with a sliding curtain instead of a door. She pulled the curtain back and looked at me with a grayish white shocked face and I had to ask her what the problem was. When she told me I was completely taken back as I never smoked, drank or did street drugs ever.
She said that they could not find a reason except that it was what it was.

I went directly to surgery; same day took the gall bladder out and then some chemo. Chemo was hell. Did not lose much hair but all I could do was eat, shower and sleep. No energy for anything else, BUT in under a year I was declared caner free! Those were the best words I have ever heard ever.

That was in 2014 and I am 100% cancer free still.

I hope and will say a prayer for you that everything comes out great. I care about you deeply and want the best period for you.

Having you as a good friend is everything to/for me, thank you so much.

Always around,

Walter

 

[Shadowlord900]

HI!
Yes, I remember, and I love helping you stay safe.

I had 3 screens, but I do not remember in which order they were. They were MRI, CT scan and Ultrasound.

I will never in my life forget when the lady doctor came in, I was in a room with a sliding curtain instead of a door. She pulled the curtain back and looked at me with a grayish white shocked face and I had to ask her what the problem was. When she told me I was completely taken back as I never smoked, drank or did street drugs ever.
She said that they could not find a reason except that it was what it was.

I went directly to surgery; same day took the gall bladder out and then some chemo. Chemo was hell. Did not lose much hair but all I could do was eat, shower and sleep. No energy for anything else, BUT in under a year I was declared caner free! Those were the best words I have ever heard ever.

That was in 2014 and I am 100% cancer free still.

I hope and will say a prayer for you that everything comes out great. I care about you deeply and want the best period for you.

Having you as a good friend is everything to/for me, thank you so much.

Always around,

Walter

Thank you for your wisdom and kind words. It'll definitely come in handy if having an endoscopy doesn't help figure out my weight loss issue.

 

[whywere]

Thank you for your wisdom and kind words. It'll definitely come in handy if having an endoscopy doesn't help figure out my weight loss issue.

Something else came to mind, now not ever trying to scare anyone, I just want the best for you, is if they do screenings for gall bladder, I would also ask about pancreatic screening also.

A colleague of mine back in 2013, had issues and they found out that he had pancreatic cancer, and they were successful in taking it out and he was just fine.

I will say a prayer for you every night when I lay me head on my pillow as having you here is family to me. I have no family nor friends except everyone here and that really includes YOU, my awesome friend.

Walter

 

[Shadowlord900]

Posting an update about this just because I feel like it.

Fortunately the Lansoprazole has helped me feel better and admittedly I've been able to gain weight much easier the longer I've been on them, but I still get some discomfort in my chest and torso. I also still haven't been sleeping very well (tried both Nytol and Kalms, both seem to make me sleep worse). So despite that, I've purposely been eating and drinking less, also exercising to lose weight in hopes the doctors will take me seriously when I lie to them that the Lansoprazole isn't working.

Well the good news is that I've been to seen the doctor today and I'm finally getting my referral to the NHS for an endoscopy. The bad news is that not only will I have to wait a few months before I can get my endoscopy (good thing I don't actually feel bad atm >___>), I have to go for a blood test and get weighed again in 2 weeks time so I still have to make sure I can lose a little bit more weight until then so I don't cause any suspicion. I also tried asking the doctor if he would be willing to prescribe any medication stronger than Nytol to help me sleep, sadly he was unwilling to because of my age and how addicting they can be.

Even though I might make a separate topic on it, any advice on how to get stronger medication to help me sleep better?

 

[Forever Sleep]

Posting an update about this just because I feel like it.

Fortunately the Lansoprazole has helped me feel better and admittedly I've been able to gain weight much easier the longer I've been on them, but I still get some discomfort in my chest and torso. I also still haven't been sleeping very well (tried both Nytol and Kalms, both seem to make me sleep worse). So despite that, I've purposely been eating and drinking less, also exercising to lose weight in hopes the doctors will take me seriously when I lie to them that the Lansoprazole isn't working.

Well the good news is that I've been to seen the doctor today and I'm finally getting my referral to the NHS for an endoscopy. The bad news is that not only will I have to wait a few months before I can get my endoscopy (good thing I don't actually feel bad atm >___>), I have to go for a blood test and get weighed again in 2 weeks time so I still have to make sure I can lose a little bit more weight until then so I don't cause any suspicion. I also tried asking the doctor if he would be willing to prescribe any medication stronger than Nytol to help me sleep, sadly he was unwilling to because of my age and how addicting they can be.

Even though I might make a separate topic on it, any advice on how to get stronger medication to help me sleep better?

I think they do really struggle with diagnosing digestive tract disorders as I guess the organs work in tandem and are so close together and the pain can kind of travel. I was curious when you mentioned chest and torso pain and consuming nuts. Do you get pain when you consume foods with fat in?

I suffered with gallstones and had 13 attacks before they HAD to do something because a stone had moved into the bile duct. (Partly my fault for delaying going to see a GP and moving location middway through but also partly theirs on not doing blood tests etc).

Years before I remember getting really bad stomach pain for a bit but when the actual gallstone attacks came, they were incredibly painful. I only wonder because it WAS chest pain I experienced and shortness of breath. (I thought it might be a heart attack to begin with). Also pain mostly on the right side. They did an ECG, an ultrasound and put me Omeprazole also- which did sod all. The pain used to be chronic just under the diaphragm and would eventually radiate out to the base of the shoulder blades. Just wondered if your pain was similar?

I think bloodtests are very useful to assess what is going on. They knew from them that my bilirubin levels were high (heading towards jaundice) and my bile duct was likely obstructed.

I really hope they are able to find out what is wrong. I COMPLETELY understand your frustration and desperation trying to tell them something is wrong and being ignored. My Dad used to get so frustrated with me trying to diagnose myself off of the Internet but it's kind of like- if they're not going to bother- what can you do? I really hope they can help you this time.

 

[Shadowlord900]

I think they do really struggle with diagnosing digestive tract disorders as I guess the organs work in tandem and are so close together and the pain can kind of travel. I was curious when you mentioned chest and torso pain and consuming nuts. Do you get pain when you consume foods with fat in?

I suffered with gallstones and had 13 attacks before they HAD to do something because a stone had moved into the bile duct. (Partly my fault for delaying going to see a GP and moving location middway through but also partly theirs on not doing blood tests etc).

Years before I remember getting really bad stomach pain for a bit but when the actual gallstone attacks came, they were incredibly painful. I only wonder because it WAS chest pain I experienced and shortness of breath. (I thought it might be a heart attack to begin with). Also pain mostly on the right side. They did an ECG, an ultrasound and put me Omeprazole also- which did sod all. The pain used to be chronic just under the diaphragm and would eventually radiate out to the base of the shoulder blades. Just wondered if your pain was similar?

I think bloodtests are very useful to assess what is going on. They knew from them that my bilirubin levels were high (heading towards jaundice) and my bile duct was likely obstructed.

I really hope they are able to find out what is wrong. I COMPLETELY understand your frustration and desperation trying to tell them something is wrong and being ignored. My Dad used to get so frustrated with me trying to diagnose myself off of the Internet but it's kind of like- if they're not going to bother- what can you do? I really hope they can help you this time.

Man I feel sorry for you, I think you had it worse than I did. Despite getting chest pains I fortunately do not get any shortness of breath.

The only things I've eaten that I definitely know cause some kind of discomfort in me are the dried fruit & nut mixes, and both the sleeping tablets I've mentioned above. Before I was unsure if fatty foods and milk were also a culprit, but for the past week I've been able to eat a lot of things without causing any kind of discomfort in me, and that includes fatty foods and milk.

Whenever I get any pain/discomfort, it usually starts at the bottom of my chest and on the top of my torso, but usually a little more on the left side, on occasion it can travel down to around the navel area and the left side of it but not that often. No pain in my shoulder blades but I can't tell if any of my chest pains come from my diaphragm or not. I don't have any trouble going to the toilet, and my stools are normal now since cutting out dried fruit & nut mixes plus the beetroot juice for the past 2 months.

I don't think the two of us share the same problems, but I can't say for certain unless if I could get a doctor to compare our medical documents. XD

Ironically my Dad was the opposite and would do a lot of medical research for himself to the point that most of my family thinks he became too paranoid about his health. He did suffer with a lot of issues in the last few years of his life though. He died of esophageal cancer a couple of years ago.

 

[Forever Sleep]

Man I feel sorry for you, I think you had it worse than I did. Despite getting chest pains I fortunately do not get any shortness of breath.

The only things I've eaten that I definitely know cause some kind of discomfort in me are the dried fruit & nut mixes, and both the sleeping tablets I've mentioned above. Before I was unsure if fatty foods and milk were also a culprit, but for the past week I've been able to eat a lot of things without causing any kind of discomfort in me, and that includes fatty foods and milk.

Whenever I get any pain/discomfort, it usually starts at the bottom of my chest and on the top of my torso, but usually a little more on the left side, on occasion it can travel down to around the navel area and the left side of it but not that often. No pain in my shoulder blades but I can't tell if any of my chest pains come from my diaphragm or not. I don't have any trouble going to the toilet, and my stools are normal now since cutting out dried fruit & nut mixes plus the beetroot juice for the past 2 months.

I don't think the two of us share the same problems, but I can't say for certain unless if I could get a doctor to compare our medical documents. XD

Ironically my Dad was the opposite and would do a lot of medical research for himself to the point that most of my family thinks he became too paranoid about his health. He did suffer with a lot of issues in the last few years of his life though. He died of esophageal cancer a couple of years ago.

Yes, that's very true- you can end up convincing yourself you have everything under the sun. I am sorry for the loss of your Dad though.

Yes, from what you've said, our symptoms do sound different. Still- like someone I worked with said- 'you know how your own body feels- if you feel like there's something wrong- best to check it out.' It does aggregate me how uninterested medical folk can be sometimes. I get it that they're overworked and I know some people are never away from the doctors. Still, some of them are very lacking in the bedside manner department. One of the people I saw was a bit dismissive. I felt almost smug when the tests came back to show there was a problem .

Pain is such a difficult thing to scale. Did you have to 'rate your pain on a scale of 1 to10'? It's kind of impossible if you haven't experienced other pain to compare it to! Think I underscored because I tried to compare it to things I haven't even experienced like broken bones, so they weren't all that motivated to act. I really hope they can find out what might be wrong and treat it.

 

[Shadowlord900]

Yes, that's very true- you can end up convincing yourself you have everything under the sun. I am sorry for the loss of your Dad though.

Yes, from what you've said, our symptoms do sound different. Still- like someone I worked with said- 'you know how your own body feels- if you feel like there's something wrong- best to check it out.' It does aggregate me how uninterested medical folk can be sometimes. I get it that they're overworked and I know some people are never away from the doctors. Still, some of them are very lacking in the bedside manner department. One of the people I saw was a bit dismissive. I felt almost smug when the tests came back to show there was a problem .

Pain is such a difficult thing to scale. Did you have to 'rate your pain on a scale of 1 to10'? It's kind of impossible if you haven't experienced other pain to compare it to! Think I underscored because I tried to compare it to things I haven't even experienced like broken bones, so they weren't all that motivated to act. I really hope they can find out what might be wrong and treat it.

Don't feel too bad about the loss of my Dad, I hated my Dad, glad he's gone out of my life. XD

You're not alone with having to deal with dismissive people. One of my support workers condescended me by saying I should always listen to the doctor. Bloody glad I didn't, otherwise I'd still be suffering on Omeprazole.

I used to have to do pain ratings back whenever I got visits from the ambulances. I always scored myself higher than what I was really feeling, even back then part of me was worried that if I didn't score myself high enough they wouldn't take me seriously.

Thank you for your concern, at least the blood test and endoscopy should help narrow things down with what may be going wrong with my body.

 

[Sunset Limited]

Do you have trouble falling asleep or staying asleep?

 

[Shadowlord900]

Do you have trouble falling asleep or staying asleep?

Falling asleep I have no trouble with, it's staying asleep I have trouble with. I can seem to only sleep for about 3-4 hours at most. Getting back to sleep a second time is usually more difficult than the first time round.
Common sleeping routine seems to be me falling asleep after 10pm, waking up between 1-2pm, taking another 30-60 minutes to fall back asleep again, then waking up between 4-6am. Rarely do I wake up after 6am.

 

[Sunset Limited]

Falling asleep I have no trouble with, it's staying asleep I have trouble with. I can seem to only sleep for about 3-4 hours at most. Getting back to sleep a second time is usually more difficult than the first time round.
Common sleeping routine seems to be me falling asleep after 10pm, waking up between 1-2pm, taking another 30-60 minutes to fall back asleep again, then waking up between 4-6am. Rarely do I wake up after 6am.

Have you tried melatonin supplements or melatonin agonists? Trust the doctors. Remember, sleep works together with a healthy life and body. Medicines do not solve the problem, they are only symptomatic treatment. Losing weight is a good idea. We have the same problem. I don't have trouble sleeping, but I wake up after 3-4 hours. Have you tried polysomnography? Obstructive sleep apnea can be a cause. My advice, never use benzos.

 

[Shadowlord900]

Have you tried melatonin supplements or melatonin agonists? Trust the doctors. Remember, sleep works together with a healthy life and body. Medicines do not solve the problem, they are only symptomatic treatment. Losing weight is a good idea. We have the same problem. I don't have trouble sleeping, but I wake up after 3-4 hours. Have you tried polysomnography? Obstructive sleep apnea can be a cause. My advice, never use benzos.

I haven't tried melatonin yet but it is something I've been looking into. I have been wondering whether if I should try to get my hands on the prescription only based ones like Circadin or give over the counter melatonin a try.

I preferably don't want to try losing weight just to go sleep, despite losing weight to try to get an endoscopy. I'm about 170cm in height, currently 9 stone 8 pounds with a BMI of I think 20.30. That's below the 22 average so I'm definitely not overweight. If anything I'm closer to being underweight.

I would like to try polysomnography but I dunno how easy that would be to get in the UK. I wouldn't mind paying for one privately if it weren't too expensive and didn't need a referral from my GP. (Not only can getting referrals from them be pain, even just getting in contact with them can be a pain.)

 

[Sunset Limited]

I haven't tried melatonin yet but it is something I've been looking into. I have been wondering whether if I should try to get my hands on the prescription only based ones like Circadin or give over the counter melatonin a try.

I preferably don't want to try losing weight just to go sleep, despite losing weight to try to get an endoscopy. I'm about 170cm in height, currently 9 stone 8 pounds with a BMI of I think 20.30. That's below the 22 average so I'm definitely not overweight. If anything I'm closer to being underweight.

I would like to try polysomnography but I dunno how easy that would be to get in the UK. I wouldn't mind paying for one privately if it weren't too expensive and didn't need a referral from my GP. (Not only can getting referrals from them be pain, even just getting in contact with them can be a pain.)

I still don't know what the problem really is. It started suddenly 7-8 years ago. I woke up 4 hours after sleeping one night and could not sleep again. I thought it was temporary. It took days and I realized I was in trouble. I tried many things. Sleeping pills, hydroxyzine (anti-histamine), passiflora, propranolol. All of them cause tolerance and will not work after a while. The best is mirtazapine. Now I use 3.5 mg of mirtazapine, 1 mg of melatonin, 10 mg of hydroxyzine to sleep. If my sleep is interrupted, I take an additional dose of 3.5 mg of mirtazapine. I have a lightproof room and earplugs. I did sports, ate healthy, tried everything, but my sleep did not come back. Medical science is very lazy about sleep. They are mostly trying to keep us awake.

You can test for sleep apnea with a pulse oximeter. If it's below 95% when you wake up, you have a high risk of sleep apnea. "Getting back to sleep a second time is usually more difficult than the first time round." That's I am. I know how you feel. Insomnia sucks.

 

[Shadowlord900]

I still don't know what the problem really is. It started suddenly 7-8 years ago. I woke up 4 hours after sleeping one night and could not sleep again. I thought it was temporary. It took days and I realized I was in trouble. I tried many things. Sleeping pills, hydroxyzine (anti-histamine), passiflora, propranolol. All of them cause tolerance and will not work after a while. The best is mirtazapine. Now I use 3.5 mg of mirtazapine, 1 mg of melatonin, 10 mg of hydroxyzine to sleep. If my sleep is interrupted, I take an additional dose of 3.5 mg of mirtazapine. I have a lightproof room and earplugs. I did sports, ate healthy, tried everything, but my sleep did not come back. Medical science is very lazy about sleep. They are mostly trying to keep us awake.

You can test for sleep apnea with a pulse oximeter. If it's below 95% when you wake up, you have a high risk of sleep apnea. "Getting back to sleep a second time is usually more difficult than the first time round." That's I am. I know how you feel. Insomnia sucks.

Does taking the mirtazapine, melatonin and hydroxyzine all at the same time help you get a full night's sleep if not interrupted?

I'm no sleeping expert, but from what I've read about sleeping medicines, they all don't recommend taking one with different sleeping medicines at the same time. I reckon that's probably why you still can't get a good night's sleep if the above's not working. I also imagine taking all of 3 those for too long a period of time is going to make your body increase your tolerance to them too much.

Anyways I'm gonna try getting a pulse oximeter from my local LloydsPharmacy tomrrow, or order one online if I can't. It's a good start.

 

[Sunset Limited]

Does taking the mirtazapine, melatonin and hydroxyzine all at the same time help you get a full night's sleep if not interrupted?

I'm no sleeping expert, but from what I've read about sleeping medicines, they all don't recommend taking one with different sleeping medicines at the same time. I reckon that's probably why you still can't get a good night's sleep if the above's not working. I also imagine taking all of 3 those for too long a period of time is going to make your body increase your tolerance to them too much.

Anyways I'm gonna try getting a pulse oximeter from my local LloydsPharmacy tomrrow, or order one online if I can't. It's a good start.

I don't use hydroxyzine often. No tolerance problems with mirtazapine and melatonin. Melatonin improves sleep quality. Mirtazapine works really well about induction of sleep. It is also a good antidepressant. Mirtazapine + melatonin worked for me, a good combination. If my neighbors don't make noise, even if I wake up, I can go back to sleep.

 

[Shadowlord900]

Okay I need somewhere to rant and let some steam off because I'm very pissed off.

I managed to lose a tad more weight before getting the blood test and thankfully all seemed well. (Okay admittedly my Serum total bilirubin level is 36 umol/L. That's considered to them to be abnormal and way above the 5 - 21 range. But I dunno if that's due to me taking Lansoprazole and/or trying to lose weight fast in a very unhealthy manner.)

I didn't think they were gonna pester me about anything else again up until I have my endoscopy. Well a few hours ago I got a text message from my GP wanting to do another blood test and asking me to make an appointment. I'm fucking angry about this because I wasn't warned they would want to do another blood test. Unfortunately I've been gaining weight after my first blood test (also got GERD again a few days ago so I've been taking my spare Lansoprazole to try and quickly nip it in the bud) and now I need to lose weight again because while the text message doesn't mention it, chances are they'll want to weigh me again.

The only thing I can think of doing is try to delay it as much as possible and try to lose 7-8 pounds before getting the next blood test. I can use catching COVID as an excuse but that on its own will only buy me about 20 days at most. (My idea is to say I caught COVID at a new years eve party so it'll be a little more than 20 days.)