Are they missing my pancreas?

[blee444]

Hello. I know you all have your own worries and I've struggle with whether to post this or not while reading through your stories.

But I'm not getting any help and after 3 months and frankly, I'm at my wits end.

In november of 14 I started to get really bad upper left abdominal pain, just below (not behind) the rib cage and pain along my left side as well. Never on the right side of me.

I became (and continue to be) incredibly obnoxiously gassy my husband says I've lost my classiness. My stomach is noisier than my outdated dishwasher and I have light (almost alien like gold) very soft stools all day every day. I also have new reflux (never had that before). No appetite loss and very little weight loss.


My pancreatic enzymes have been low (lipase is significantly below low cutoff of 15 at 7 on the first test and 11 on the next test)
My liver enzymes are all proper, a little too low in some areas.
I've had a contrast CT scan two weeks after pain onset which didn't even mention my pancreas except to say "unremarkable" - no measurements, etc.
I've had a HIDA scan which shows gallbladder functioning at 86% and no stones
I've had a gallbladder ultrasound which shows mild sludge - only the head of the pancreas was visualized during this and is unremarkable.
I've had a EGD which shows mild reactive gastritis, no hpylori, no celiac disease etc.
I've had a pancreas elastase fecal test which shows normal.
I've had Stool tests for parasites and they are negative.

I'm 35, female, with autoimmune diseases of the heart and thyroid.

For three solid months I can't get away from the restroom and have missed work which is something I have never ever been prone to. The pain and the digestive upset is not normal for me and unfortunately, when you plug in those symptoms you get pancreatic troubles.

It took 30 doctors to diagnose my congestive heart failure when I was 15 so suffice to say I have a hard time trusting medical professionals from this - I told them multiple times it was my heart and they needed to further evaluate.

When reading forums or researching, no one ever says what their symptoms were. But Google seems to think it's on to something. I hate Google, by the way - it's so bad for me.

I'm just wondering where I should stand up for myself and where I should back down. I dont want to be a nuissance, but I don't feel good. If you had to fight for your diagnosis, or you see something I'm missing, I'd value your input and be forever in your debt because clearly, you have better things to do.

Thanks

[CHIN_C]

Consider getting a second opinion from another doctor. Can't hurt!

[Jaygf]

Hi Blee,
I feel your frustration. I first had  a gastro stomach pain (quite severe) dix years ago and was sent for an endoscopy, which saw me diagnosed with a small hiatus hernia.  I started reacting to fatty foods and for years suspect gall bladder. I would change my diet and be healthy, then slip and suffer again.
Two years ago I started experiencing right sided abdominal (from RUQ near ribs down to nearly my hip)  'burning' pain that varied in intensity. At that time my Doctor (who has since left the area) did bloodwork and sent me for a ct with contrast. Pretty much came back as spleen; pancreas; liver; bowel unremarkable and of normal appearance.  The only hit was  it picked up diffuse uterine fibroids (adenmyosis)  which was missed by ultrasound.

For the last 3 to 4 weeks I have the burning sensation again which this time starting in left upper quadrant and has been there for about four weeks, being a stress head, I've jumped to the worse conclusion it being a hideous pancreatic cancer thanks too the dreaded "google". (speaking of bad for you...)
The last two nights I've had terrible sleep because of the pain and accompanying anxiety. Tomorrow I am off for blood work (but not checking specifically for pancreatic ca) which includes liver function tests and a full abdominal ultrasound.

Pending outcomes of that, I guess my next step is colonoscopy and if anything shows from the ultrasound and further tests specific to gallbladder/pancreas.

Every step of the way, I have advocated and requested tests.
Have you thought of asking for an gastroscopy and colonoscopy with samples to be taken?
(My friend was having all sorts of issues and she ended up being diagnosed with coeliac disease  after gastroscopy which was seriously affecting her health, including gastro problems)