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Anyone diagnosed with pancreas issues?

pancreas epi exocrine pancreatitis orthostatic muscle pain fibromyalgia

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#1 onebratt08

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Posted 28 October 2016 - 04:47 PM

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Hi all, new here. Wondering if I could hear from others who have been diagnosed with pancreas issues (forms of pancreatitis, EPI, etc). Here's what I'm going through:

At 19 or 20, I was diagnosed with acute pancreatitis. My lipase was 10x the top of the range. Doc did all these tests, couldn't figure out why I had pancreatitis, called it ideopathic. I became very careful with my diet. And from time to time, about once a year, I would suffer an attack that would disable me for a day. Then it seemed to go away a while until my gall bladder went bad about 12 years later. Had the bad gall bladder removed and I felt fine again for a while. The past several years, I've had IBS symptoms trending towards IBS-D most of the time. On and off pain in my back that would lay me up. Things have gotten worse this year, so I saw a gastro who did an endoscopy and colonoscopy, more concerned about ulcers, gastritis, Crohn's and celiac. I've been gluten free for over 4 years, so the celiac test was a bust, but I do think I have troubles with gluten. Colonoscopy was perfect. Endoscopy showed just a mild gastritis and a sliding hiatal hernia. I take Nexium for reflux. But I'm still having pain, it's usually first noticeable as mid-back pain, usually left side, but sometimes center. I don't know why doc keeps steering away from my pancreas with my history, although he did a blood test and lipase was mildly elevated - it always is. Always. The pain waxes and wanes, so it's not always present.

However, I have some other symptoms and I'm wondering if these can be related to a pancreas issue. Pain, particularly in the neck and shoulders, to the point that lifting weights or swimming puts me in severe pain for about a week after. Orthostatic intolerance (blood pressure drops when I stand) - I manage this with meds, but if I even miss a dose, I'm struggling to stay upright. Docs have rules I do NOT have POTS. My body struggles to balance electrolytes. I have to supplement electrolytes and lots of them. I'm wondering if these symptoms can be tied to a problem with the pancreas, perhaps a mild EPI? I don't vomit and my weight holds pretty steady, that said, I can eat a ton of food and not gain an ounce and I have always tended towards hypoglycemia. I'm a 5'4" female at about 125 lbs and I can out-eat my 6'7", 220 lb husband. He gains weight if he eats like me. Another thing, I know people with pancreas problems should not drink, but I can not drink. Even a sip makes me feel pain (usually in the neck and shoulders). It's like my body is allergic to alcohol...wasn't always that way, but it's become that way in recent years. 

I've been to about 20 doctors since my symptoms started. The back, shoulder, neck pain presented first. We've ruled out so much - thyroid disease, autoimmune diseases, Crohn's, Lyme disease, various other infectious disease, various muscle diseases and muscle damage. They think I'm a medical mystery. But with a pain flare this week and reading more about the other symptoms of pancreatic problems, I'm thinking the symptoms I have might all be related to a history of pancreas issues. If I'm on the right track, please help me so that I can try steering docs in that direction. I've been in daily misery for nearly 5 years. 

Thanks!


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#2 Gerry J

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Posted 03 April 2017 - 10:26 AM

I was diagnosed with chronic pancreatitis in 2010 since 1990 onwards I've had so much pain sometimes I developed a heroin habit self medicating for the pain. At first the doctor told me to take a diconal or a half 1 then they stopped working and since 1998 onwards ive had a hell of a life self medicating for this , I'd advise anyone else not I repeat DO NOT self medicate

#3 Twindy91

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Posted 21 January 2020 - 08:47 PM

Hi, did they ever figure out the issue? I am experiencing excruciating back and neck pain along with constipation.



#4 APR

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Posted 12 September 2020 - 02:05 AM

I'm sorry that this is an old post, but I was wondering what people's experience has been with EPI.  I've had a tough time since being diagnosed with IBS back in 2015 or so, and I'm wondering if I might actually have EPI.

 

I began wondering about EPI when I started hearing radio commercials about the issue.  My stools are always odd and what I would describe as oily.  Nothing really helps a whole lot with my issues, and at least if I had EPI, I would have the hope of a treatment that would actually help.

 

As far as I know, I don't have what could obviously be an underlying cause of EPI (I'm not diabetic, don't have a history of pancreatitis or alcohol abuse, and am not a diabetic).  I do wonder about family history, though.  My mother died of pancreatic cancer [though smoking was likely a factor].  My brother had severe ulcerative colitis, for which he had a bowel resection--and not long after, he became a type one diabetic [which I am presuming was a complication from surgery, as I don't believe it is common to develop type one diabetes at 30 years old].



#5 Ilyria

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Posted 12 September 2020 - 10:38 AM

Hi APR
What does your doctor say about your concerns? I'm sure there is at least one test you can make to confirm your suspicion.
My pancreas is damaged and not working properly in a way that could be described like EPI. I have steathorrea and I am unable to digest fat so I take enzymes daily with my main meals. I'm not diabetic but control my sugar levels often because my glucose levels are too low. I'm also severely underweight and have malnutrition and malabsorption issues. I rarely drink anything but water but my liver is also damaged and not functioning as it should.The thing is: if one small thing inside of you is "broken" they all become like that eventually. I know now what was wrong with me in the first place but damage on some of my internal organs is permanent. This is the price we pay for mis-diagnosis. So double check everything with your doctor and try with enzymes if you indeed have EPI..it should help you a lot.

#6 APR

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Posted 15 September 2020 - 08:38 AM

I haven't been to the doctor since I learned about EPI, but I am going for my annual physical next week, so I'm going to bring it up.

 

I did mention it to my endocrinologist.  I was only seeing an endocrinologist because I was diagnosed with primary hyperparathyroidism and had a parathyroidectomy to cure the problem.  She said that she does have patients with EPI [as of course, diabetics see endocrinologists and EPI is common among diabetics], but that it is something that she doesn't deal with.

 

I'm guessing I'll have to go back to my gastro doctor, but maybe my family doctor can at least run some tests.

 

It's kind of frustrating that neither my gastro doctor nor my family doctor thought to mention EPI is a possible issue.



#7 Ilyria

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Posted 15 September 2020 - 11:27 AM

I couldn't agree more APR..it is indeed frustrating that you have too dig up possible conditions and tests by yourself instead of doctors mentioning it to you..good luck with that. Definitely mention it on your annual check up and test pancreas levels. Lots of things have the same or almost the same symptoms and it is hard for them to determine what exactly is wrong but hopefuly you can confirm if it is EPI or not soon. Sorry about your thyroid..I test mine every 3 months because I am on the verge of hyperthyroidism-as I said all my internal organs are a bit damaged but it seems things are better now that I take regular therapy-For me it was extreme vitamin B9 deficit.

#8 APR

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Posted 15 September 2020 - 01:59 PM

Ilyria, I'll post here what happens.

 

FYI, I had a parathyroid issue and not a thyroid issue.  It seems like many people have even heard of parathyroids.  They were originally named "parathyroids" because they are close to the thyroid, the parathyroids have a totally different function from the thyroid.

 

The parathyroids actually regulate the level of calcium in the blood.  Sometimes, a problem like an adenoma (a benign/non-cancerous tumor) causes one or more parathyroids to produce too much hormone, which raises blood calcium levels.  In the long run, that's bad because it's actually pulling calcium out of your bones.  It can cause other problems as well, like kidney stones.  Coincidentally, given that we're on an IBS forum, hyperparathyroidism can also cause heartburn and constipation.

 

I didn't notice any symptoms and I only found out about my parathyroid issue because routine blood work revealed above normal blood calcium levels.  Once I was diagnosed, my endocrinologist ordered a bone density test--and at only 46 years old, I was found to have osteoporosis!  A 46 year old man should have no significant bone density loss.  Fortunately, my bone density should improve over time to the point that it returns to normal now that I had the bad parathyroid removed.  Unlike with the thyroid, humans have 4 [or rarely, 5] parathyroids and the remaining parathyroid glands will have no problem producing enough hormones.

 

BTW, that is another issue that doctors sometimes miss or ignore, so it's good to look at lab results for yourself to see if anything is out of normal range.  With calcium blood levels, labs generally don't break down what is in normal range based on a patient's age.  What is a normal calcium level for an 18 year old may be high for 50 year old or 70 year old.

 

I shouldn't have to worry about that anymore.  I hope you do okay as far as your thyroid issues.  My mother had a problem with hyperthyroid.  They used radiation to shrink her thyroid, but then she became hypothyroid and had to take synthetic hormones.  As far as I know, she dd fine with that.  I know there are some serious symptoms associated with either hyper or hypothyroid, so I hope your doctors manage your thyroid issues well!







Also tagged with one or more of these keywords: pancreas, epi, exocrine, pancreatitis, orthostatic, muscle pain, fibromyalgia


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