Gallbladder redux: Should I have it taken out?
December 14, 2012 10:38 AM Subscribe
Mystery Gallbladder Redux [aka Perhaps Beating a Dead Horse]: Hey mefiters. YA(still)NMD but: I previously posted a year ago about this exact problem, and I seem closer to a resolution, but it's still the same question: should I have my gallbladder removed?
Since that last posting I have had multiple HIDA scans, over the course of the year, which do show my gallbladder ejection fraction heading in a downwardsy trend. I think I've had a 17%, then a 28%, then a 14%. Many surgeons would take out one's gallbladder just based one of these alone. However, I've read so many studies online now that say for people who don't exhibit classic symptoms, there's only about a 30-40% it might help, 10% chance you end up with 'dumping syndrome', which may or may not be helped by cholesterol lowering medications after the fact, and then some suspected, but indeterminate percentage of people that develop some other digestive ailment once their gallbladder is removed as a result. So it still looks to me, generally, like if one does not have typical symptoms, but can avoid having it removed, you should.
I have had nearly zero of the typical symptoms of gallbladder failure. I have no pain in the upper left or right quadrant ever, or attacks. What I have had is constant 24/7 bloating for the last 4 years, and higher amounts of belching, regardless of anything I eat. In the last month, I suddenly now have constant mucus in my throat all day.. I know it's not airborne allergy, because I've been treated successfully for that, previously, and am on the strongest of immunotherapy (shots) that docs will allow. Been tested for food allergies. Previously I had tried most all of the ppi's with no effect, but I guess I could try them again. I also started having sleep disturbances when the bloating began, and have tried being treated for sleep apnea, but have not had much success. (I keep trying though. Now I'm using a dental appliance). I am currently at a reasonable weight for my height (5'10 and 160 for now, but have often been underweight).
I don't eat any gluten, dairy, yeast, or refined sugar ever. I'm religious about it; I've been on a diet without those things for about 8 years now. Mainly because I have Hashimoto's and celiac. I've tried many different acupuncturists. I've tried a bunch of different diets (paleo, scd, low acid, low fructose) which seemed to help somewhat, but didn't fix the problem. I'm still on paleo now. I guess I could try absolutely zero fruit sugars and see if that helps.
Prior to the HIDA scans (which I had to beg for), I'd been to the Mayo Clinic in Scottsdale, as well as to some integrative medicine docs in NY. I've had upper and lower gi's, capsule endoscopy, abdominal ultrasound, gastric emptying tests, and cat scans. All negative.
As a last ditch effort, in the last month, I consulted a highly recommended naturopathic doc (not homeopathic) at the Bastyr institute, who is also very well versed in gallbladder and gastro disease from an allopathic perspective. He's had me try using Betaine HCl harder at a higher dose (since I had a previous test for low stomach acid), and taking some herbal spasmolytics for the gallbladder. It seemed like it was helping at first, but now, not so much. I have previously tried things like slippery elm, mashmallow root, etc, in combination, but no effect.
So. It definitely appears that I'm developing reflux-y symptoms now, despite not having had any during the whole last 4 years I've had this problem. I have read that one of the reasons many obese people in particular have reflux is because putting a lot of pressure on the stomach affects the LES negatively. Since I'm not obese, perhaps the failing gallbladder - causing the bloating, I speculate - is finally causing me to have reflux.
So Mefites - do enough/all signs point to gallbladder?
Since that last posting I have had multiple HIDA scans, over the course of the year, which do show my gallbladder ejection fraction heading in a downwardsy trend. I think I've had a 17%, then a 28%, then a 14%. Many surgeons would take out one's gallbladder just based one of these alone. However, I've read so many studies online now that say for people who don't exhibit classic symptoms, there's only about a 30-40% it might help, 10% chance you end up with 'dumping syndrome', which may or may not be helped by cholesterol lowering medications after the fact, and then some suspected, but indeterminate percentage of people that develop some other digestive ailment once their gallbladder is removed as a result. So it still looks to me, generally, like if one does not have typical symptoms, but can avoid having it removed, you should.
I have had nearly zero of the typical symptoms of gallbladder failure. I have no pain in the upper left or right quadrant ever, or attacks. What I have had is constant 24/7 bloating for the last 4 years, and higher amounts of belching, regardless of anything I eat. In the last month, I suddenly now have constant mucus in my throat all day.. I know it's not airborne allergy, because I've been treated successfully for that, previously, and am on the strongest of immunotherapy (shots) that docs will allow. Been tested for food allergies. Previously I had tried most all of the ppi's with no effect, but I guess I could try them again. I also started having sleep disturbances when the bloating began, and have tried being treated for sleep apnea, but have not had much success. (I keep trying though. Now I'm using a dental appliance). I am currently at a reasonable weight for my height (5'10 and 160 for now, but have often been underweight).
I don't eat any gluten, dairy, yeast, or refined sugar ever. I'm religious about it; I've been on a diet without those things for about 8 years now. Mainly because I have Hashimoto's and celiac. I've tried many different acupuncturists. I've tried a bunch of different diets (paleo, scd, low acid, low fructose) which seemed to help somewhat, but didn't fix the problem. I'm still on paleo now. I guess I could try absolutely zero fruit sugars and see if that helps.
Prior to the HIDA scans (which I had to beg for), I'd been to the Mayo Clinic in Scottsdale, as well as to some integrative medicine docs in NY. I've had upper and lower gi's, capsule endoscopy, abdominal ultrasound, gastric emptying tests, and cat scans. All negative.
As a last ditch effort, in the last month, I consulted a highly recommended naturopathic doc (not homeopathic) at the Bastyr institute, who is also very well versed in gallbladder and gastro disease from an allopathic perspective. He's had me try using Betaine HCl harder at a higher dose (since I had a previous test for low stomach acid), and taking some herbal spasmolytics for the gallbladder. It seemed like it was helping at first, but now, not so much. I have previously tried things like slippery elm, mashmallow root, etc, in combination, but no effect.
So. It definitely appears that I'm developing reflux-y symptoms now, despite not having had any during the whole last 4 years I've had this problem. I have read that one of the reasons many obese people in particular have reflux is because putting a lot of pressure on the stomach affects the LES negatively. Since I'm not obese, perhaps the failing gallbladder - causing the bloating, I speculate - is finally causing me to have reflux.
So Mefites - do enough/all signs point to gallbladder?
I am not your doctor, this is not medical advice, only medical education:
A full workup (with HIDA scans that you "had to beg for" -- sounds like it wasn't really indicated) typically suggests irritable bowel syndrome or functional abdominal pain, or in the right patient, narcotic bowel syndrome and not an anatomic cause.
If I was a surgeon, I wouldn't touch you with a 10 foot scalpel; the risk clearly outweighs the benefit when you don't have signs, symptoms, labs, or imaging suggesting you have anything obviously wrong with your anatomy.
I'd be much more concerned about the amount of radiation and risk you're exposing yourself to from all of these workups.
I'm not trying to say that people with symptoms such as yours with a negative workup are "crazy" or "it's all in their head," but I see similar patients every single day, and it seems like modern medicine cannot figure it out nor help.
posted by gramcracker at 11:20 AM on December 14, 2012 [2 favorites]
A full workup (with HIDA scans that you "had to beg for" -- sounds like it wasn't really indicated) typically suggests irritable bowel syndrome or functional abdominal pain, or in the right patient, narcotic bowel syndrome and not an anatomic cause.
If I was a surgeon, I wouldn't touch you with a 10 foot scalpel; the risk clearly outweighs the benefit when you don't have signs, symptoms, labs, or imaging suggesting you have anything obviously wrong with your anatomy.
I'd be much more concerned about the amount of radiation and risk you're exposing yourself to from all of these workups.
I'm not trying to say that people with symptoms such as yours with a negative workup are "crazy" or "it's all in their head," but I see similar patients every single day, and it seems like modern medicine cannot figure it out nor help.
posted by gramcracker at 11:20 AM on December 14, 2012 [2 favorites]
bitterkitten: should I have my gallbladder removed?It's interesting that you aren't asking "What is wrong with my body?", but specifically "What is wrong with my gall bladder?"
...
Many surgeons would take out one's gallbladder just based one of these alone.
...
I have had nearly zero of the typical symptoms of gallbladder failure.
...
So Mefites - do enough/all signs point to gallbladder?
Multiple experts seem to be saying "I'm not sure there's anything wrong with your gall bldder", in fact.
posted by IAmBroom at 12:00 PM on December 14, 2012 [2 favorites]
Response by poster: I guess my question is whether the HIDA scan is really worth a damn, but it's the only diagnostic test I've had that has shown a positive, repeatedly. If it hadn't, I wouldn't be trying to point the finger at mr. gallbladder so much. Many doctors will also operate on people who clearly have symptoms of gallbladder disease despite a normal HIDA scan, which makes me wonder about its validity/reliability.
Gram - originally, yes, they decided to tell me "you have 'non-ulcer dyspepsia'", which is right up there with all the other diagnoses of "unknown etiology" when doctors have no idea what to tell you. Hence, all the testing. But regarding those - it's true, one could avoid all the tests, and perhaps I should have tried even more holistic things at the beginning of this, but since I had already been diagnosed with Hashimoto's and celiac, my gi at the time wanted to make sure I didn't have anything super-ultra nasty in my innards. Maybe he should have waited to recommend the bigger-gun radiations and stuck with only the scopes. Unfortunately I panicked.
The reason I had the multiple HIDA scans over the last year was because I feel my condition has continued to worsen, and HIDA is the only thing that's showed a positive. I 'begged' for it because there's clearly a problem, and the doctor who chose to order it was a different one who was willing to work with me further on trying to figure this thing out. However, after getting back the first positive HIDA result - which really surprised the heck out of him - and he said "I think maybe that's it" - he didn't sound too sure but still suggested surgery right away.
So since he seemed mystified, I decided to wait and see if the result would repeat itself (My understanding is that of all the nuclear medicine scans, HIDA has one of the lowest radiation profiles, supposedly about the same amount you'd get from a plane flight from Cali to NY), and manage the symptoms in the meantime.
Generally, I'm a guy who is ok with managing symptoms. I've a very compliant patient. But when things get to where my magic bag of managing tricks starts to run out, then I'm in trouble. My bag, and it appears that of western/holistics medicines, is nearly empty.
So, is there something wrong with the gallbladder? Is the HIDA scan a useless piece of crap? These are questions. There are certainly cases where people did way less workup than I did trying to find their problem, they did not meet the usual criteria for gallbladder failure, had theirs out - and now they are much, much better. I don't know if they were crazy for having that done, or if they had other signs not mentioned in literature, but they do exist. The statistics say in folks who have had gallbladder surgery with positive HIDA scans, but atypical symptoms for gallbladder disease, as I mentioned above, only 30-40% are helped. Maybe now that's the best answer I'm going to get.
posted by bitterkitten at 1:23 PM on December 14, 2012
Gram - originally, yes, they decided to tell me "you have 'non-ulcer dyspepsia'", which is right up there with all the other diagnoses of "unknown etiology" when doctors have no idea what to tell you. Hence, all the testing. But regarding those - it's true, one could avoid all the tests, and perhaps I should have tried even more holistic things at the beginning of this, but since I had already been diagnosed with Hashimoto's and celiac, my gi at the time wanted to make sure I didn't have anything super-ultra nasty in my innards. Maybe he should have waited to recommend the bigger-gun radiations and stuck with only the scopes. Unfortunately I panicked.
The reason I had the multiple HIDA scans over the last year was because I feel my condition has continued to worsen, and HIDA is the only thing that's showed a positive. I 'begged' for it because there's clearly a problem, and the doctor who chose to order it was a different one who was willing to work with me further on trying to figure this thing out. However, after getting back the first positive HIDA result - which really surprised the heck out of him - and he said "I think maybe that's it" - he didn't sound too sure but still suggested surgery right away.
So since he seemed mystified, I decided to wait and see if the result would repeat itself (My understanding is that of all the nuclear medicine scans, HIDA has one of the lowest radiation profiles, supposedly about the same amount you'd get from a plane flight from Cali to NY), and manage the symptoms in the meantime.
Generally, I'm a guy who is ok with managing symptoms. I've a very compliant patient. But when things get to where my magic bag of managing tricks starts to run out, then I'm in trouble. My bag, and it appears that of western/holistics medicines, is nearly empty.
So, is there something wrong with the gallbladder? Is the HIDA scan a useless piece of crap? These are questions. There are certainly cases where people did way less workup than I did trying to find their problem, they did not meet the usual criteria for gallbladder failure, had theirs out - and now they are much, much better. I don't know if they were crazy for having that done, or if they had other signs not mentioned in literature, but they do exist. The statistics say in folks who have had gallbladder surgery with positive HIDA scans, but atypical symptoms for gallbladder disease, as I mentioned above, only 30-40% are helped. Maybe now that's the best answer I'm going to get.
posted by bitterkitten at 1:23 PM on December 14, 2012
bitterkitten, I do not think this is a medical question that should be put to the internet. You're asking random strangers if your HIDA scan is worth anything. A HIDA scan must be taken in context of a patient's situation. We don't know you, aren't your doctor, and can't look at your HIDA scan or any of your other (voluminous numbers of) test results. No one here has a crystal ball, and even if people post anecdotes that "I had poor EF on HIDA and my symptom was bloating, and getting the gallbladder removed worked for me!" (or the opposite), it will be meaningless in terms of prediction of your outcome.
HIDA scan has a sensitivity and specificity of 90-95% when it is done on patients wherein there is a high degree of suspicion for gallbladder disease. If doctors were doing it on everyone who had any sort of GI symptom, the sensitivity and specificity numbers would be different. In other words, how useful the test is depends on who you use it on. It's not "useless", but at the same time it's not very helpful if you're not using it the way scientific literature says it should be used.
No, reflux is not commonly related to gallbladder disease. Reflux is a common problem that many people have. You say you only just started having reflux symptoms, but in your question from a year and a half ago, you mention trouble with throat clearing - which is a typical symptom of reflux.
Bloating is a nonspecific symptom that can be related to many GI ailments, including IBS and celiac which you are known to have. If you're asking me would I get my gallbladder out to see if it would help with bloating, even with a questionable test result - not likely, unless all other possibilities had been exhausted. It's a major surgical procedure, even if it is done laparoscopically. I would do anything else I could think of to address bloating before I would have surgery to remove an organ to address it. That's me.
But would you like to take the chance on surgery that may be more likely not to help you than it is to help you? It seems to me that only you can answer that question.... maybe you feel like you've already exhausted other possible solutions and this problem is ruining your life, and that might change the equation - I can't speak for you. You might find this blog post interesting, by the way.
I'll add one more thing: despite the fact that we'd like to believe that all doctors are practicing the best/only evidence based medicine, a lot of situations may not have great evidence to base decisions on, and docs are human too. So it is that if you think you have a specific problem and need a specific solution, and keep asking doctors about it, you'll likely eventually find one that will give you what you want. I hope some of this may be useful to you, even though neither I nor anyone here can tell you "you should have it/not have it taken out" or "the problem is/is not your gallbladder".
posted by treehorn+bunny at 10:24 PM on December 14, 2012 [1 favorite]
HIDA scan has a sensitivity and specificity of 90-95% when it is done on patients wherein there is a high degree of suspicion for gallbladder disease. If doctors were doing it on everyone who had any sort of GI symptom, the sensitivity and specificity numbers would be different. In other words, how useful the test is depends on who you use it on. It's not "useless", but at the same time it's not very helpful if you're not using it the way scientific literature says it should be used.
No, reflux is not commonly related to gallbladder disease. Reflux is a common problem that many people have. You say you only just started having reflux symptoms, but in your question from a year and a half ago, you mention trouble with throat clearing - which is a typical symptom of reflux.
Bloating is a nonspecific symptom that can be related to many GI ailments, including IBS and celiac which you are known to have. If you're asking me would I get my gallbladder out to see if it would help with bloating, even with a questionable test result - not likely, unless all other possibilities had been exhausted. It's a major surgical procedure, even if it is done laparoscopically. I would do anything else I could think of to address bloating before I would have surgery to remove an organ to address it. That's me.
But would you like to take the chance on surgery that may be more likely not to help you than it is to help you? It seems to me that only you can answer that question.... maybe you feel like you've already exhausted other possible solutions and this problem is ruining your life, and that might change the equation - I can't speak for you. You might find this blog post interesting, by the way.
I'll add one more thing: despite the fact that we'd like to believe that all doctors are practicing the best/only evidence based medicine, a lot of situations may not have great evidence to base decisions on, and docs are human too. So it is that if you think you have a specific problem and need a specific solution, and keep asking doctors about it, you'll likely eventually find one that will give you what you want. I hope some of this may be useful to you, even though neither I nor anyone here can tell you "you should have it/not have it taken out" or "the problem is/is not your gallbladder".
posted by treehorn+bunny at 10:24 PM on December 14, 2012 [1 favorite]
By the way, you should ask your doctor about your idea that the HIDA scan is 'getting worse'. I don't know the precise margin of error of a HIDA scan, but every test has a margin of error, and I know there are a lot of factors that can affect the result of a HIDA scan (like medications, for example). The scan has a low EF, yes, but I'm not sure the conclusions you're drawing from it are warranted.
posted by treehorn+bunny at 10:28 PM on December 14, 2012 [1 favorite]
posted by treehorn+bunny at 10:28 PM on December 14, 2012 [1 favorite]
FWIW, pills and supplements can cause bloating/acid, sometimes even when taken with food and in a time-release capsule. Especially when taken before bed/lying down. Are you taking any pills you can live without?
Have you tried Heather's IBS diet? (although I would not recommend her peppermint capsules for someone with upper GI issues; despite the fact that they are time-release, it's not enough).
Have you been tested for pancreatitis?
posted by serena15221 at 5:36 AM on December 15, 2012
Have you tried Heather's IBS diet? (although I would not recommend her peppermint capsules for someone with upper GI issues; despite the fact that they are time-release, it's not enough).
Have you been tested for pancreatitis?
posted by serena15221 at 5:36 AM on December 15, 2012
Generally your gallbladder only comes out if you're in pain or it looks like you have cysts that could become cancerous. If you don't fit into either of those categories, I'd ask for a different work up based on the actual symptoms you have. The phlegm could be anything, really.
Abdominal bloating could be liver (ascities). But if you have no other liver indications I'd go with digestive issues related to your diet.
posted by syncope at 4:10 PM on December 15, 2012
Abdominal bloating could be liver (ascities). But if you have no other liver indications I'd go with digestive issues related to your diet.
posted by syncope at 4:10 PM on December 15, 2012
Response by poster: Thanks very much for the comments -
fyi: The bloating is definitely the stomach - sure, I've had abdominal bloating in the past, but avoiding all the foods I avoid seems to keep the lower gi in check. It hurts to press on my stomach, but otherwise does not hurt from eating any particular food. Nothing I do seems to alter that state.
Tree - Yes, I'm asking random strangers, but as per the norm on MeFi, I know nobody is my physician. Indeed I have nearly extinguished every option I can find (at least in the USA) in terms of dietary changes, sleep habits, supplements, and/or most prescription meds (I haven't tried antifungals, but nobody seems to think that would make a difference) all of which I have tried adding singularly and in concert.
I thought I would turn to my friends on the green another time before I seriously consider surgery.
posted by bitterkitten at 7:35 AM on December 17, 2012
fyi: The bloating is definitely the stomach - sure, I've had abdominal bloating in the past, but avoiding all the foods I avoid seems to keep the lower gi in check. It hurts to press on my stomach, but otherwise does not hurt from eating any particular food. Nothing I do seems to alter that state.
Tree - Yes, I'm asking random strangers, but as per the norm on MeFi, I know nobody is my physician. Indeed I have nearly extinguished every option I can find (at least in the USA) in terms of dietary changes, sleep habits, supplements, and/or most prescription meds (I haven't tried antifungals, but nobody seems to think that would make a difference) all of which I have tried adding singularly and in concert.
I thought I would turn to my friends on the green another time before I seriously consider surgery.
posted by bitterkitten at 7:35 AM on December 17, 2012
This thread is closed to new comments.
posted by Nimmie Amee at 11:08 AM on December 14, 2012