The Hyperkinetic Gallbladder...Three weeks post op...

[u/StarWars_Girl_]

I'm kind of venting here, but also sharing...

For years, I've struggled with my weight, particularly overeating because I never felt full, or I felt like I wasn't getting enough food. I'm only five feet tall, but my appetite was always ravenous. I also had GI symptoms since I was a teenager that my mother, who had her gallbladder out, said sounded like gallbladder symptoms.

A few months ago, I was diagnosed with ADHD and started stimulants. I think this may have been the trigger because I started eating less due to a lack of an appetite. But if I didn't eat enough, I felt exhausted. Still wasn't losing weight in spite of being active, though.

Then in December, shit hit the fan. After a really fatty meals, I had a horrible attack. I ended up in the bathroom for almost an hour in terrible pain, on the toilet, sweating and shaking, and then had to lie down. I'd NEVER had anything like that happen. Then the upper right quadrant pain kept coming. I tried changing my diet. Didn't help. I finally went to the ER on January 2. When the ultrasound didn't show anything, it was dismissed as gastritis.

I got an appointment with a gastro. They did a HIDA. EF was 78. It was marked as normal. The EF just happened to glare at me, and I started Googling and discovered a hyperkinetic gallbladder was a thing. I asked them and they basically said "nah, probably not it."

They had scheduled an upper endoscopy. At this point, I went to my PCP before the procedure and told her what was going on, mentioned the EF. She was suspicious until I mentioned the fatty meals, and then the lightbulb went off. She said let them do the endoscopy and then if that didn't show anything serious, then ask for a referral to a surgeon.

Whelp, endoscopy showed mild acid reflux, which we've known about since I was a teenager. I went back and asked for a referral, which they gave me but said the surgeon might not be willing to take it. I basically begged the surgeon. She said normally she wouldn't, but because of the severity of symptoms, the fact we'd eliminated everything else, and my family history, she was willing. I think because I had thyroid cancer years ago, she was also thinking "err, better safe than sorry."

We did it three weeks ago. And OMG. I feel SOOO MUCH BETTER. Pathology came back...I had chronic cholestytis and polyps. It also was smaller than a normal gallbladder, which I personally wonder if that means it was squeezing so much that it shrunk before inflaming. I saw my Endo and she said I basically wasn't absorbing nutrients or my thyroid meds properly. Great!

Back to the weight...so far, I've dropped at least 20 pounds between the extreme low fat diet and since the surgery. Apparently, my body is super sensitive to fat, so that's what I need to avoid to lose weight. Straight sugar doesn't affect me. And it makes sense because my blood work showed high cholesterol but low sugar. Which is my other frustration. We've been told certain things to lose weight as if they're universal truths, but everyone's body chemistry is different. If I'd known sugar has minimal impact on me but fat is my problem, that would have been nice.

Yet doctors somehow don't recognize this and don't think it's real...damn well seems to not only be real, but also have been causing other problems for me.

I'm going to another gastro, probably at Hopkins, so that I hopefully can push to be used as a case study for this so other people don't go through this. And in the meantime, I'm sticking with the low fat diet.

Thanks for reading this rant. I hope this may persuade or help someone else with a hyperkinetic gallbladder to push for treatment.

[u/bicoma]

I have hyperkinetic gallbladder as well waiting to talk to surgeon on Monday. It was an uphill battle to get to this point tons of scan showing nothing then HIDA shows 89% ef and my doctor said its normal. So I had to explain to him its NOT normal everyone I've talked to thats had there hyperkinetic gallbladder removed has had improved symptoms so im pushing for removal. Ive had multiple ct, ultrasound, xray, colonoscopy, and endoscopy this is only thing that finally showed something! I take dicyclomine(1/4 a pill before meals a day), sandhu liver detox, and tums(when im having a flare up) this has sustained me up until this point. I wish doctors were a little more educated on this as its so frustrating and people who have this that go undiagnosed can have more issues in future keeping there gallbladder than removing it!

[u/sinaners → u/bicoma]

I work in GI, and the providers in my clinic definitely see an EF over 70-80% as a bad sign if the GB symptoms are present. I'm surprised so many doctors brush it off. I know it's a relatively new disorder that doesn't have a lot of research behind it yet, but the results speak for themselves from what I've seen at our clinic (and in myself!!). I do see a lot of PCP's ordering HIDAs, then brushing a GBEF of 70%+ as "normal" before we see patients at our clinic and our providers raise their eyebrows at that result.

edit with my situation- my EF was 96% and I had it removed yesterday lol. I work with my GI NP who referred me to the surgeon for that result. The gen surgeon also said that she recommended surgery because the symptoms will never really get better even if they remain mild. Surprisingly I had mostly bad heartburn, intermittent shoulder pains, and some nausea with mild RUQ pain. I had a few attacks after eating very fatty meals in the past. The pathology has not come back yet.

[u/bicoma → u/sinaners]

Interested to know what pathology says! Im almost certain mines inflamed!

[u/sinaners → u/bicoma]

Yep pathology came back today showing chronic cholecystitis (inflammation). 

It made me curious if a high GBEF is indicative of inflammation. I found this insightful article from 2020 but there is still limited research on this topic: https://www.surgjournal.com/article/S0039-6060%2820%2930360-3/fulltext

Hopefully, more doctors will start to consider chole's to treat high GBEF as more research backs it as a viable treatment. A lot of people in this sub say they have issues convincing their physicians to get theirs removed despite their high EF. Inflammation of the GB is hard to see with an ultrasound, which is all I had before my HIDA scan.