Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

[YippeeKi YOW !!]

@Howard @BeADocToGoTo1 @ebethc and all the other really great posters, too fatigued t go back and take down names, please forgive .....

I know that something this info-dense is hard for you right now, but I can’t urge you enough to gradually read your way thru, from BeADoc’s first post to this one or beyond if there are more posters.

When I read this, all kinds of bells, whistles, and flashing lights went off, all screaming HOWARD …. as you can imagine, all that noise and flashing light was supremely uncomfortable, any yet I've persisted ….

Please, please check this out …..

And yes, I know I’m a pain the @ss. Can’t help it. Just my nature.

 

[Inara]

Hi @BeADocToGoTo1, thank you.

Genetic testing is interesting but might not be that useful in providing actionable steps.

I think it's important to understand a problem in order to solve it.

One other question, have you had your thyroid tested properly before? Most standard doctors still do not do this properly.

I'm taking thyroid hormones. besides that, the thyroid is ok.

 

[YippeeKi YOW !!]

I'm taking thyroid hormones. besides that, the thyroid is ok.

@Inara
Artificial synthetic thyroid meds screwed up my system really impressively, especially after my PCP, for reasons that he couldn't explain beyond, "It seemed like a good idea", switched me from the T3 I'd done swimmingly on for 25 years or so to Synthroid w/ a tiny smidgen of Cytomel.

I finally, in desperation, took myself off all thyroid meds and gradually upped my iodine, Vit A, and selenomehtionine. I had to cut way back on the selenmethionine due to sensitivity to sulfur, but my thyroid gland slowly healed anyway, and gradually I returned to a better balance and a pretty well-restored thyroid function.

 

[BeADocToGoTo1]

Hi @BeADocToGoTo1, thank you.

I think it's important to understand a problem in order to solve it.
I'm taking thyroid hormones. besides that, the thyroid is ok.

Absolutely! Most doctors never ask "why?" enough times to really get to the root cause.

Regarding the thyroid, the best book I came across was The Paleo Thyroid Solution by Elle Russ. Most docs just test TSH, which clearly indicates the doctor does not understand how the thyroid works. Free T3, reverse T3, TPOAb, TgAb tests are often not done, even though they should be standard when checking the thyroid function. Magnesium, selenium and a few others are often deficient. There is a little bit of an overlap in potential root causes, nutrient deficiencies and some symptoms with EPI. EPI can also be a deeper cause of thyroid issues due to the nutrient deficiencies.

 

[BeADocToGoTo1]

@Inara
Artificial synthetic thyroid meds screwed up my system really impressively, especially after my PCP, for reasons that he couldn't explain beyond, "It seemed like a good idea", switched me from the T3 I'd done swimmingly on for 25 years or so to Synthroid w/ a tiny smidgen of Cytomel.

I finally, in desperation, took myself off all thyroid meds and gradually upped my iodine, Vit A, and selenomehtionine. I had to cut way back on the selenmethionine due to sensitivity to sulfur, but my thyroid gland slowly healed anyway, and gradually I returned to a better balance and a pretty well-restored thyroid function.

My wife also became ill from Synthroid and has been great using Armour Thyroid (made from animal thyroids) which contains both T4 and T3. If your body has difficulty transforming T4 to T3 due to e.g. nutrient deficiencies, autoimmune, damage or other issues, taking just T4 will not help.

 

[YippeeKi YOW !!]

My wife also became ill from Synthroid and has been great using Armour Thyroid (made from animal thyroids) which contains both T4 and T3. If your body has difficulty transforming T4 to T3 due to e.g. nutrient deficiencies, autoimmune, damage or other issues, taking just T4 will not help.

There was an assay of what was actually in Armour a few years ago, and synthetic thyroid compounds were discovered to be as, or more prevalent than the porcine thyroid. Making it even more difficult, the levels of thyroxine and triiodothyronine were unpredictable from batch to batch, making it even harder to know what you were getting, or which, or how much and causing a fair amount of distress to some patients.

And the prices kept going up and up.

Forest Laboratories was sold to the drug company Activis in July 2014, after there apparently had been a lot of issues and questions regarding the manufacturing and contents of the then current Armour. Some of those issues and questions continued after the acquisition.

It's great that your wife has been doing well on it, I'm just posting this in case others have had some difficulties with Armour, West-throid, NatureThroid or other brand names that desiccated porcine thyroid is sold under.

 

[BeADocToGoTo1]

There was an assay of what was actually in Armour a few years ago, and synthetic thyroid compounds were discovered to be as, or more prevalent than the porcine thyroid. Making it even more difficult, the levels of thyroxine and triiodothyronine were unpredictable from batch to batch, making it even harder to know what you were getting, or which, or how much and causing a fair amount of distress to some patients.

And the prices kept going up and up.

Forest Laboratories was sold to the drug company Activis in July 2014, after there apparently had been a lot of issues and questions regarding the manufacturing and contents of the then current Armour. Some of those issues and questions continued after the acquisition.

It's great that your wife has been doing well on it, I'm just posting this in case others have had some difficulties with Armour, West-throid, NatureThroid or other brand names that desiccated porcine thyroid is sold under.

Thank you for that important information! I did not know that. Wow, who can you trust these days? They keep messing with things that work in the name of profit. And the prices are indeed ridiculous.

 

[YippeeKi YOW !!]

They keep messing with things that work in the name of profit. And the prices are indeed ridiculous.

@BeADocToGoTo1
I know, right? I did really well on Armour for a fair amount of time (this was after the Dr took me off the T3 I'd been taking for yonks), and I was happy to be off synthetics. But then things started wobbling around, and when I raised those issues with my PCP, he switched me to Synthroid, and the rest is just a sad story, retold endlessly by an army of others.

Like you, I'm so tired of things that work being messed with endlessly in the interest of bigger profits, fewer manufacturing steps, cheaper ingredients, the list goes on and on.

And as you noted, the prices just rise to absolutely beanstalk-ian levels with no end in sight.

Sometimes it makes a girl so sad and weary.

 

[PatJ]

The simple answer to that is that most of the otc supplements are way too low in lipase conten to be of much help for EPI and you need lipase in the strength that usually comes with prescription meds

One over-the-counter product that contains a higher than usual amount of lipase, amylase, and protease is Enzymedica Lypo Gold (Vitacost link):
Lipase - 15000 FIP
Amylase - 8500 DU
Protease - 20000 HUT

And what do you think about pancreatin products such as Pancreatin 4X
Amylase 50,000 USP
Protease 50,000 USP (trypsin and chymotrypsin)
Lipase 4,000 USP

or Pancreatin 8X
Protease 200,000 USP
Lipase 16,000 USP
Amylase 200,000 USP

 

[kangaSue]

And what do you think about pancreatin products

The only thing in this line that I have tolerated is (prescription) Creon 25,000 pancreatic extract.
When I found I was sensitive to one of the excipients (macrogol 4000 - polyethylene glycol in disguise) in Creon, and so may have been contributing to malabsorption symptoms, I tried Source Naturals Pancreatin 8x but that set me off vomiting and gave me worse diarrhea.
https://www.iherb.com/pr/Source-Naturals-Pancreatin-8X-500-mg-100-Capsules/6199

Maybe that's just me as I have a severely messed up GI system. I'm also quite confused with the unit measurement comparisons, how they measure USP against FIP, DU and HUT and how that compares to Creon's Pancreatic Extract 300mg equivalent to not less than 25,000 BP units lipase, 18,000 BP units amylase and 1,000 Ph. Eur. units protease.

 

[prioris]

I had painful and swelling pancreatitis problem the past year or more. Took me a long while to figure things out. No way I was going to allow myself to go into the conventional healthcare system. They don't know %@#$^ about healing.

 

[BeADocToGoTo1]

One over-the-counter product that contains a higher than usual amount of lipase, amylase, and protease is Enzymedica Lypo Gold (Vitacost link):
...

The main issue with over the counter versions is that they are not tightly controlled about what they state is in the pill. The units of measure are confusing and vary per brand. With enzymes you want to take out one important variable, the enzyme content level, so that you can fine tune what your body needs per meal or snack. When the enzyme levels vary wildly per pill even from the same brand or even the same bottle, it is a painful, frustrating, losing battle. In a bind it is better than nothing, but I would go for prescription ones. Which one of the prescription ones is a bit of trial and error. Some people may need a higher lipase to protease ratio, for example. I went for one and stuck with it so that my body could get used to it.

The only thing in this line that I have tolerated is (prescription) Creon 25,000 pancreatic extract.
When I found I was sensitive to one of the excipients (macrogol 4000 - polyethylene glycol in disguise) in Creon, and so may have been contributing to malabsorption symptoms, I tried Source Naturals Pancreatin 8x but that set me off vomiting and gave me worse diarrhea.

Maybe that's just me as I have a severely messed up GI system. I'm also quite confused with the unit measurement comparisons, how they measure USP against FIP, DU and HUT and how that compares to Creon's Pancreatic Extract 300mg equivalent to not less than 25,000 BP units lipase, 18,000 BP units amylase and 1,000 Ph. Eur. units protease.

It is so frustrating and miserable to be so sensitive to everything, including the pills that will help. I was nauseous for many months even on Creon. But in hindsight, that was because many other healing elements had not been tackled, including removing bodily insults, microbiome dysbiosis (SIBO, Candida, etc.), gastritis, acid reflux, nutrient deficiencies. And it takes time to heal, for example, the stomach lining and the protective mucous layer after providing the body the nutrients it needs.

 

[BeADocToGoTo1]

I had painful and swelling pancreatitis problem the past year or more. Took me a long while to figure things out. No way I was going to allow myself to go into the conventional healthcare system. They don't know %@#$^ about healing.

Sorry to hear that prioris. I have been educating my doctors and anyone who will listen on recognizing symptoms, lists of medical tests to consider (some that many doctors have never heard of), food, water, and supplements to consider, and all the additional healing steps that are required to improve the overall health picture when suffering from pancreas damage. Doctors, even if they understand the pancreas, will never have enough time to delve into root cause analysis to really help the overall situation. They will rarely go in deep in understanding what potential bodily insults you are exposed to, or provide practical and detailed information on food, supplements, water, and anything that will lower oxidative stress, lower inflammation, reduce nutrient deficiencies, and help the body get back into balance.

 

[prioris]

Sorry to hear that prioris. I have been educating my doctors and anyone who will listen on recognizing symptoms, lists of medical tests to consider (some that many doctors have never heard of), food, water, and supplements to consider, and all the additional healing steps that are required to improve the overall health picture when suffering from pancreas damage. Doctors, even if they understand the pancreas, will never have enough time to delve into root cause analysis to really help the overall situation. They will rarely go in deep in understanding what potential bodily insults you are exposed to, or provide practical and detailed information on food, supplements, water, and anything that will lower oxidative stress, lower inflammation, reduce nutrient deficiencies, and help the body get back into balance.

Forget the doctors trying to fix it. They won't. It is up to you.

I don't have the major pancreatitis swelling in my back any more.

One of the major causes of pancreas problems is cholesterol clogging up the liver, gallbladder, pancreas etc. so cholesterol can cause major problems with liver, gallbladder, bilary duct and pancreas. Let me make it clear that virtually all the cholesterol is goodness for the body. It's badness when it clogs up that area. It sets off a whole chain of reactions. Sadly, doctors tell patient to cut out gallbladder. People don't realize how dangerous medical doctors are.

For anyone with pancreas and gallbladder problems ,,, cleansing this area needs to be done ...search for my posts on Gallbladder flush and Liver steatosis inflammation ...

The other possible problem could be blood flow to area ... coagulation should be considered ... nattokinase(mild problem), doctors best lumbrokinase (severe problem) ... i'd take serrapeptase also to clear away dead tissue

1000 mg of chromium has been shown to positively impact pancreas in rats

I don't use doctors or tests. I can use an anatomy chart to locate the problem. I concentrate on finding things that will healing me.

 

[YippeeKi YOW !!]

Forget the doctors trying to fix it. They won't. It is up to you.

I learned the very, very hard way, and couldn't agree more. Hoping everyone else here will learn more easily.

People don't realize how dangerous medical doctors are.

Words fail me. Doctors don't call their business, and it is a business, a practice for nothing. You're paying them to help you, they're using you as a free lab rat. Not all of them, but there's a large cut that are, and that may not have an inkling or a clue, but will treat you with the current received wisdom nonetheless. Whether it's been proven to help symptoms like yours or not.

I don't use doctors or tests. I can use an anatomy chart to locate the problem. I concentrate on finding things that will healing me.

This is the same system that I use. A really detailed medical anatomy text and chart, and sometimes, Grey's Anatomy. Not the archly named TV show, ya'll. There's actually a long-standing medical text by that name.

Those and the google machine have been invaluable. Can't rec this method highly enough, at least it's worked for me. It's harder than turning your life over to the "experts", but it makes up in longevity for what it lacks in ease.

I won't even go into the influence of BigPharma in this area, the mods, altho generally pretty liberal, wont let us use the kind of language I'd be forced to devolve to.

 

[prioris]

plus you save enormous amount of travel time, gas, accident risk getting there, long wait time, wasted time, doctor pzzing you off with ignorance and plus wasted money ... many tests can be done from mail or walk in places without doctor permission ... all sorts of online resources to interpret tests ...

many people just aren't motivated to learn to heal themselves so if one does use a doctor, consider the skype visit where one isn't relegated to doctors just in your area ... medicare is starting to reimburse for that stuff now

 

[YippeeKi YOW !!]

many people just aren't motivated to learn to heal themselves

@prioris
I don't think it's that, I think that we've all been brainwashed since the turn of the last century into believing that we just aren't smart enough, don't have the expert training (this from a scholastic system that's reduced itself in may instances to using 'learning trees', as in " ..... if there's this symptom, then follow the yes line to next step ...", etc until the tree finally arrives at a series of possible diagnoses ..... first used to teach grade school children simple math and grammar), or the years of experience, or the right connections to consulting Drs, or knowedge ofl ab tests and how to order them ....

Add to that the stresses put on a Dr's time by insurance co's demands and the Drs on-call hospital obligations, and pretty soon you wind up with 7 1/2 min's per appt, whip out the prescription pad, write up something, hand the patient their prescription while simultaneously calling "Next....", rinse repeat, repeat, repeat ......

It's a deeply damaged, greedy, flawed system, and all of us are partly to blame. We haven't found the right way to contest this viciousness, I'm not sure what that would be, but we ain't got to it yet.

Sooooo ..... roll up your sleeves, get a couple of medical dictionaries and texts and a good anatomy guide, get real friendly with the google thingy, and do as much as you can about learning what you can when you have those blessed days of clarity and focus. If you want, you can start with Dr. Google and work from there, just beware of sites that are selling anything. At the very least, it'll put you in a better position to gently guide your Dr (they're, like, hyper-ultra-sensitive to this, so be very very careful) in the direction you need him to go to give you the best care you can wrangle out of the system.

Luckily, we can remedy that by taking as much of our medical care into our own hands as possible, including, as @prioris mentioned, getting almost any test you can think of done, on your own, and also with your own money.

So go forth and learn. And know that yes, you're smart enough, and no one cares about your body and wellness more than you do, unless it's your mother.

 

[BeADocToGoTo1]

Hi YippeeKi YOW !!

What a great way to sum it up. It is so familiar! Dr Google became my friend as luckily there is a wealth of information internationally available now.

Doctors also have to be so focused on CYA with the litigious nature of society, and fear of reprisals from their medical boards and affiliations. They have no time for root cause analysis which is utterly crucial for anyone with CFS. This leaves us, the sufferers, hanging and we are forced to roll up our sleeves as you state. We are the best advocate for our health, but there is so much noise in the sickcare system that it is easy to get lost in it.

 

[prioris]

Doctors also have to be so focused on CYA with the litigious nature of society, and fear of reprisals from their medical boards and affiliations. They have no time for root cause analysis which is utterly crucial for anyone with CFS. This leaves us, the sufferers, hanging and we are forced to roll up our sleeves as you state. We are the best advocate for our health, but there is so much noise in the sickcare system that it is easy to get lost in it.

yep

if a doctor has to decide between protecting your health vs protecting themselves from lawsuits, guess which one will win out

 

[Cipher]

It is if your liver isn't producing enough bile. Bile promotes paristalsis which moves feces through the colon. Some people with chronic constipation find help from ox bile supplements, although they shouldn't be taken long term because the body may become dependent and reduce the natural output of bile in response to the supplement.

How can one know if their liver isn't producing enough bile?

Have you tried magnesium? With EPI, since it can impact any metabolic pathway and your digestion system, it is possible. Magnesium deficiency will certainly have an impact. Are you drinking healthy water, i.e. not chlorinated, not fluoridated, and not mineral poor (e.g. R.O without essential minerals added back in = demineralized)?

I'm taking about 300-400 mg of magnesium bisglycinate per day so I'm probably not deficient in that. The tap water I'm drinking is not chlorinated nor fluoridated. I don't think it's demineralized, the purifying process at the local water plant consists of sand and UV-light.