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

[jump44]

Yes I have issues with Dairy except for butter really. Im mostly dairy free besides occasionally. I have confirmed low stomach acid, betaine hcl is moderately helpful. I have gluten sensitivity but no celiacs, but eating gluten for sure messes me up, so I avoid it. I have had my appendix removed when young and have done way too many antibiotics so am fairly certain my microbiome isnt in great shape either. when Im in a crash it feels like every thing I eat is a problem.

I havent had the specific tests you mention but over time Ive had most of these things checked out by various doctors and "specialists". I have a me/cfs diagnosis resulting from a head injury . I notice moderate improvements from leaky gut supplements, some probiotics make profound but short lived improvements, xifaxin helped then didnt help, enzymes like I said have been hit or miss, thyroid meds help..idk its a tangled web, but this thread seems to resonate with my symptoms.

Idk if I will be able to find a doctor to prescribe me the enzymes, I will look around. in the meantime I may try the thorne one even though its expensive, it looks potent, along with some leaky gut supplements.

 

[grapes]

@BeADocToGoTo1, two questions;

1) I understand that amylase is released from the salivary glands into saliva when chewing, but it's nowhere near as effective as what gets released directly to the intestines by the pancreas. And my own life-changing experience hugely underscores the latter. Yet, I do get the impression that both are important, in that saliva amylase is signaling an early release of insulin. So would that mean I simply need both--regular enzymes when eating, but still the acid-resistant caps of amylase?

2) Is there a test to tell you how much of each enzymes you need in supplementation? I am literally guessing in my case how much amylase I need in an acid resistant capsule...and I'm left wondering if I need even more or not? Is there a sign I need more? Since taking amylase in an acid-resistant cap, I can climb about 11 of the 14 steps to upstairs without excess lactic acid, but I do feel it slightly in the last few steps. Would that be a sign I need more than I take? I am taking my cap three times a day. And contrary to what I said before, it's only around 270 mg amylase per cap.

3) I am now aware that I may need more elastase, as well. My stool test was 200 and the doc I'm working with says it should be at least 500. But again, how much?

4) Finding out I also need more elastace makes me wonder if I'm headed in the same situation you're in with Exocrine Pancreatic Insufficiency (EPI). Are there just different levels of insufficiency? Do those levels always get worse?

 

[BeADocToGoTo1]

@BeADocToGoTo1, two questions;

1) I understand that amylase is released from the salivary glands into saliva when chewing, but it's nowhere near as effective as what gets released directly to the intestines by the pancreas. And my own life-changing experience hugely underscores the latter. Yet, I do get the impression that both are important, in that saliva amylase is signaling an early release of insulin. So would that mean I simply need both--regular enzymes when eating, but still the acid-resistant caps of amylase?

Amylase from the saliva is a tiny amount and just helps pre-digestion. You need both, absolutely. But, I would think about getting a prescription pancrelipase that has all the needed enzymes and stop worrying about the split.

2) Is there a test to tell you how much of each enzymes you need in supplementation? I am literally guessing in my case how much amylase I need in an acid resistant capsule...and I'm left wondering if I need even more or not? Is there a sign I need more? Since taking amylase in an acid-resistant cap, I can climb about 11 of the 14 steps to upstairs without excess lactic acid, but I do feel it slightly in the last few steps. Would that be a sign I need more than I take? I am taking my cap three times a day. And contrary to what I said before, it's only around 270 mg amylase per cap.

Sadly, there is no such test. It is a bit of guess work in the beginning what works best for you, and for your meals and snacks. No doctor will know this. It is a bit of trial and error in the beginning, but a prescription version will take most of the guess work out of the equation.

3) I am now aware that I may need more elastase, as well. My stool test was 200 and the doc I'm working with says it should be at least 500. But again, how much?

Agreed. My elastase was just a smidge under that 200 level when I was bedridden and at my worst. Since then I have had lower and higher test results. But whenever you get a reading around the 200 micro gram/mL mark there is a very high probability that you have EPI.

I would really try to look into a prescription version because then you can take most of the guessing out of it. Stick with one brand to avoid another variable. I would not worry about the various enzymes and their ratios. Play around with the amount of pills based on the lipase value. I have 12,000, 24,000 and 36,000 pills so that I can have a small dose with a snack and fine tune the rest. You will relatively quickly be able to decide what works best for your various snacks and meal types. But, you will no longer have to worry about whether the cap you filled was the exact amount or the correct strength.

This could also explain many other symptoms, since you will have been malabsorbing food, and thus missing out ideal levels of essential nutrients (vitamins, minerals, fatty acids, amino acids). This can even affect your thyroid functioning. It can be so slow, that initially you may not notice it, or some supplements have masked it temporarily. I had this with a multi-vitamin that I had been taking, for example.

4) Finding out I also need more elastace makes me wonder if I'm headed in the same situation you're in with Exocrine Pancreatic Insufficiency (EPI). Are there just different levels of insufficiency? Do those levels always get worse?

There are different levels of EPI, and for everyone the amount needed and the amount required will be different. That is why in my book I coined the "pre-EPI" (similar to pre-diabetes) term to illustrate that you can already start having a slow degradation of health over time due to only partially digesting the food. It may not hit the markers where a gastroenterologist will confirm a diagnosis of EPI, but it is still impacting your vitamins, minerals, fatty acids and amino acids, and thus can impact many metabolic pathways and show up in a myriad of symptoms. It is also why, as we get older and the pancreas starts slowing down and not producing as much enzymes, it aids in more rapid aging. And therefore I believe that pancrelipase will help with providing a bit more nutrients from your food.

 

[BeADocToGoTo1]

Yes I have issues with Dairy except for butter really. Im mostly dairy free besides occasionally. I have confirmed low stomach acid, betaine hcl is moderately helpful. I have gluten sensitivity but no celiacs, but eating gluten for sure messes me up, so I avoid it. I have had my appendix removed when young and have done way too many antibiotics so am fairly certain my microbiome isnt in great shape either. when Im in a crash it feels like every thing I eat is a problem.

I havent had the specific tests you mention but over time Ive had most of these things checked out by various doctors and "specialists". I have a me/cfs diagnosis resulting from a head injury . I notice moderate improvements from leaky gut supplements, some probiotics make profound but short lived improvements, xifaxin helped then didnt help, enzymes like I said have been hit or miss, thyroid meds help..idk its a tangled web, but this thread seems to resonate with my symptoms.

Idk if I will be able to find a doctor to prescribe me the enzymes, I will look around. in the meantime I may try the thorne one even though its expensive, it looks potent, along with some leaky gut supplements.

When I had trouble digesting I was sensitive to everything including dairy and gluten. Even though growing up I had no sensitivities whatsoever. Since I was not digesting properly with mucus and stomach lining issues, my body was sensing these partially digested particles as invaders and reacting. Everything felt inflamed. It took a while to calm down once I took the insults away, started using pancreatic enzymes, and rebalanced the nutrient deficiencies. I can eat organic sourdough (no yeast) in small amounts as that seems to be more easily digested in case you miss bread. Regular bread messes me up as well. I did reintroduce some dairy (e.g. Gouda cheese, full fat plain organic kefir or yoghurt with active cultures, goat cheese) as well for the healthy fats, minerals and vitamins after things had calmed down.

Two simple tests that insurance will usually cover, and can be done at most labs are:

• Stool elastase
• 24 or 72 hour fecal lipids test

 

[grapes]

@BeADocToGoTo1 that is VERY interesting that I could have EPI due to an elastase reading around the 200 micro gram/mL mark. Your knowledge has been very valuable.

You know what I have noticed the last few weeks? Constant pins and needles/numbness in my toes (small toe and one next to it are usually numb), plus on soles of feet, and left pinkie and ring finger, and occasionally around the mouth. At first I though of MS, but I just had a strong feeling this could be due to low B1 based on what I read. So I started taking 500 mg 2-3 times a day, and the pins and needles/numbness have greatly lessoned. That, to me, points to my deficiency enzymes. Agree?

FYI: My prescription was $1000 for 30 days of Creon. WOW. So....I said no, called the doc. Her assistant stated that they can give me a card to get it for $5.00. Thank goodness.

Tell me: when you stated you take a small amount with a snack, would that be the 12,000 pill? But what is 12,000 exactly? Mg?? I haven't yet picked up a prescription--have to get the card this next week. In the meantime, I"m taking Pure Encapsulations Pancreatic Enzymes with the acid resistant capsules. BUT...I should also take regular enzymes, too, with each meal or snack, right? Because basically, the acid resistant capsule makes it time released in a way, and a regular OTC version is immediate. Am I correct?

 

[BeADocToGoTo1]

@BeADocToGoTo1 that is VERY interesting that I could have EPI due to an elastase reading around the 200 micro gram/mL mark. Your knowledge has been very valuable.

You know what I have noticed the last few weeks? Constant pins and needles/numbness in my toes (small toe and one next to it are usually numb), plus on soles of feet, and left pinkie and ring finger, and occasionally around the mouth. At first I though of MS, but I just had a strong feeling this could be due to low B1 based on what I read. So I started taking 500 mg 2-3 times a day, and the pins and needles/numbness have greatly lessoned. That, to me, points to my deficiency enzymes. Agree?

FYI: My prescription was $1000 for 30 days of Creon. WOW. So....I said no, called the doc. Her assistant stated that they can give me a card to get it for $5.00. Thank goodness.

Tell me: when you stated you take a small amount with a snack, would that be the 12,000 pill? But what is 12,000 exactly? Mg?? I haven't yet picked up a prescription--have to get the card this next week. In the meantime, I"m taking Pure Encapsulations Pancreatic Enzymes with the acid resistant capsules. BUT...I should also take regular enzymes, too, with each meal or snack, right? Because basically, the acid resistant capsule makes it time released in a way, and a regular OTC version is immediate. Am I correct?

When you start delving into metabolic pathways and how vitamins and minerals, fatty acids and amino acids are required in the functioning you can see how a deficiency can cause a myriad of symptoms. I also had a lot of nerve issues, parasthesia including complete numbness in parts of hands, legs, face, feet, but also tingling sensations as if coming out of a frozen state. I spent a lot of money on MRIs to rule out spinal issues, nerve damage, etc. In the end it was nutrient deficiencies. All the parasthesia issues went away after fixing the nutrient levels and taking pancrelipase with food.

Creon without insurance is ridiculously expensive. Glad you were able to get it covered.

The smallest pill is 12,000, which just means 12,000 units of lipase enzymes. The pill will also include 38,000 units of protease and 60,000 units of amylase. That is just how they are noted and has no correlation with mg. I would try giving the OTC ones a break, and just work with Creon so that you limit the variables.

Regarding dosing pancrelipase, it is a bit of guess work in the beginning what works best for you, and for your meals and snacks. No doctor will know this exactly. Everybody's pancreas functions a little differently, even when healthy. Even meal types, time of day and many other elements can have an impact. My gastro mentioned that it does not help worrying about the specific units of lipase, protease and amylase as there is not much you can do about it anyway. You dial in the pancrelipase, which has all three, to what helps reduce symptoms. It is a bit of trial and error in the beginning, but a prescription version will take most of the guess work out of the equation. Stick with one brand to avoid another variable. You can play around with the amount of pills based on the lipase value. I have 12,000, 24,000 and 36,000 pills (lipase units) so that I can have a small dose with a snack and fine tune the rest.

Standard dosage guidelines are as follows:

• Initial: 500 lipase units per kilogram of body weight per meal.
• Maintenance: 400 to 2,500 lipase units per kilogram of body weight per meal.
• Maximum: 10,000 lipase units per kilogram of body weight per day.

I would start with just 12,000 (tiny pill) per meal or snack initially to get your body used to it. But with an elastase around 200, you will likely need at least 36,000 per meal (depends on your weight as well). Some doctors just start you on 36,000 per meal when EPI is confirmed, but I would start gradually. I take around 84,000-108,000 per meal because my pancreas barely makes any, and about 12,000-24,000 per snack. I take my first pill after the first bite, the last pill before the last bite, and any others spread across the meal. It depends on the volume of the meal and how fat it is (just rough estimate not by measurement). It does take a while for things to turn around, but you can notice changes in the stool first. If you feel benefit, it is likely something for life. Even if your pancreas is relatively healthy, the older we get the fewer pancreatic enzymes we produce. The gastros mention that the exocrine area does not really rebuild well (if at all) if damaged.

 

[grapes]

I am suspicious about something. An ultrasound revealed in late 2018 that I have polyps in my gallbladder duct which are blocking the release of bile. I have to take bile with most meals.

And I wonder...what if I have polyps in the pancreas duct causing what is going on with me that resembles pancreatic insufficiency? They do occur. What I need to do is see if the ultrasound revealed the pancreatic duct.

In the meantime, I've read research that TUDCA can shrink polyps in the gallbladder duct. It wasn't total shrinkage, but in six weeks, it did happen. So I'm on it three times a day. SO guess I'll see what happens i.e. if it also shrink potential polyps in the pancreatic duct.

 

[BeADocToGoTo1]

I am suspicious about something. An ultrasound revealed in late 2018 that I have polyps in my gallbladder duct which are blocking the release of bile. I have to take bile with most meals.

And I wonder...what if I have polyps in the pancreas duct causing what is going on with me that resembles pancreatic insufficiency? They do occur. What I need to do is see if the ultrasound revealed the pancreatic duct.

In the meantime, I've read research that TUDCA can shrink polyps in the gallbladder duct. It wasn't total shrinkage, but in six weeks, it did happen. So I'm on it three times a day. SO guess I'll see what happens i.e. if it also shrink potential polyps in the pancreatic duct.

Scary. Hopefully it will continue to improve. The test I did was the MRI with MRCP of the abdomen which provides a 3D picture of the gallbladder ducts, and detailed pancreas duct information. And it is non-invasive. There is also a an endoscopic ultrasonography (EUS), but I did not do that due to the invasive nature, and I read reports on it possibly causing pancreatitis in some instances.

 

[grapes]

I've been delayed in getting my Creon. Long story, but I've been on 3 each per meal of Pure Encapsulations Pancreatic Enzyme, plus regular (non acid resistant caps) of enzymes for what saliva would be doing. It did help to reduce the pins and needles in my feet a lot, except for when I wake up. That's still there. And strangely tonite, it's back. I don't normally feel it at night.

So I've been on the following per meal:

Lipase at 52,500 USP
Protease at 330,000 USP
Amylase at 360,000

The Creon brochure that my doc gave me in order to get Creon for FAR less (which I will be doing this week) says poorly digested food can lead to the following:

Oily, loose, foul smelling stools
Unexplained weight loss
Gas
Bloating
Diarrhea
Stomach pain

QUESTIONS:

1) I honestly have none of the above other than odd smelling stools. Only rarely do I get stomach pain after drinking my morning coffee. Is that odd to not have most of the above? What I HAVE had is easy crashing, plus as of many weeks ago, pins and needles on the bottom of my feet.

2) I looked again at the Genova GI Effects stool test I did a few weeks ago. On the 3rd page of results, my elastase was 259. But on the horizontal graph, it's in the green bar, meaning good. No where near the red part on the left, which means bad. There is also the Products of Protein Breakdown (Valerate, Isobutyrate, Isovalerate) which was at 2.1 with a range of 1.8-8.9. (I think it's supposed to be higher). BUT on the first page, where it says I have maldigestion at a 4 (4-6 is moderate need for support), it shows my elastase biomarker is in green, meaning low need for support, as is Fecal Fats. It's as if my moderate need for support has nothing to do with elastace. And the "Therapeutic Support Options" just states Digestive Enzymes, Betaine, Bile Salts, Apple Cider Vinegar, Mindful eating habits, and Digestive bitters. Huh?

 

[grapes]

@BeADocToGoTo1 I'm still in the process of working with the company to get Creon far cheaper, so I'm using Pure Encapsulations (PE).

I looked at the Creon chart as to how much Creon based on weight. The recommended amount for my weight is 36,000 to 144,000 Lipase. Since Pure Encaps (PE) has 17,500 Lipase per cap, that would equal to 2 caps - 8 caps.

I had gone up to 3 caps per meal of PE for at least 3 weeks, with extra amylase in acid resistant caps most of the time, but not always. But I was still falling into bad fatigue after what I would call very medium activity like scrubbing an old antique bathroom twice one afternoon--that caused terrible fatigue that night and the next day, and started recovering on the 3rd day. I went on an easy walk that afternoon, and again, more terrible fatigue.

So because I crashed so badly on 3 caps, I went up to 6 caps per meal five days ago. And it dawned on me---I've been waking up CONSTANTLY every night since I went up to 6 caps per meal and with vivid dreams.

So I am thinking I should just go down to 5 caps max right now. Am I approaching this correctly?? Bottom line, 3 isn't enough.

 

[BeADocToGoTo1]

HI @grapes

Good to hear from you again. It is a bit of trial and error to get the dosage right for your body, the meal size and content, not to mention the OTC pill quality and strength inconsistency. Every meal and snack might require a different amount in your case. But, whether there is a direct causation of you waking up at night, or crashing would be almost impossible to know. Waking up in the middle of the night can have so many causes including hormone balances, stress, etc. For many months I would be woken up by adrenaline or cortisol spikes based on blood sugar crashing or silent reflux, which indirectly was related to my EPI. I notice it more in my intestines (discomfort) and stool (softer) if I did not take enough. If It take too much my stomach will feel uncomfortable.

Are you getting enough calories during the day? When do you stop eating calories for the day? Do you drink anything beside water in the evening or with dinner? What is your blood glucose level before going to bed? Do you meditate before bed time? Do you use electronics before sleeping, such as watch TV in bed, or read the news, social media, emails, etc? Do you have any electronics in the bedroom close to your body or with LED lights? Is the temperature of the bedroom cool enough? Is it dark enough? How much sleep are you getting?

 

[grapes]

HI @grapes

Good to hear from you again. It is a bit of trial and error to get the dosage right for your body, the meal size and content, not to mention the OTC pill quality and strength inconsistency. Every meal and snack might require a different amount in your case. But, whether there is a direct causation of you waking up at night, or crashing would be almost impossible to know. Waking up in the middle of the night can have so many causes including hormone balances, stress, etc. For many months I would be woken up by adrenaline or cortisol spikes based on blood sugar crashing or silent reflux, which indirectly was related to my EPI. I notice it more in my intestines (discomfort) and stool (softer) if I did not take enough. If It take too much my stomach will feel uncomfortable.

Turns out the sleep issue was, in fact, taking too high amounts of the PE Digestive Enzymes. I made an educated decision to move to 5 caps per meal, 3 for snacks. Last night was MUCH better. Of course, as my insufficiency gets worse (it sure did the last year), I'll move to 6, etc, per meal.

 

[grapes]

@BeADocToGoTo1, Picking up Creon 36,000 on Monday. But I'm still trying to figure things out though via my use of Pure Encapsulations (PE), because until I can get the 12,000 and 24,000 caps you wisely mentioned you take (appointment in two weeks, then have to wait on the pharmacy), I may have to continue using it for snacks and smaller meals.

But the biggie problem is that I'm still crashing with bad physical fatigue. I'm currently in my second miserable day of another bad crash, just from working in our garage to put things away.

1) Based on the Creon chart, the recommended amount for my weight is 36,000 -144,000 Lipase, which with PE, is 2 caps - 8 caps, since one cap is 17,500 Lipase per cap. I got serious with 3 caps per meal / 52,500 lipase for a good three weeks, but still crashed badly with miserable physical fatigue after only medium activity and twice.

2) I moved up to 6 caps / 105,000 lipase briefly for two days, then to 8 caps / 140,000 lipase. Based on what I've read you state, probably too fast. And 8 caps caused MISERABLE nighttime wakeups and nightmares.

3) I moved down to 5 caps / 87,500 per meal a week ago, and no more excess nighttime wakeups and nightmares, and felt good enough energy to work in the garage again. But by the 4th day, I could tell something was different, and I was waking up way too early in the morning, which should have only made me sleepy, not physically tired. But by the 5th day, my body was pretty tired. I pushed through it, thus crashed BADLY that night. That is the fatigue I'm still in.

4) I moved up to 6 caps again the night of the last crash 1 1/2 days ago, and it's done nothing for my energy and the nighttime wakeups and nightmares came back!!

So that nighttime misery occurs with 6 or 8 caps, yet I'm still crashing on 5 caps. A predicament! So I'm left wondering if this is a low nutrient issue because I only got serious with the enzymes in late June starting at 3 caps, yet still not enough. Protein, carbohydrates, and fat are the macronutrients that provide energy. Yet what do I do if I can't get higher than 5 caps, plus am still crashing easily on 5 caps? I'm left wondering if I just still need more time to build up the micronutrients.

I'm still intrigued that I had an intermediate level of carbs in my stool nearly a year ago. And since carbohydrates are used for energy (glucose), and since before I knew about EPI, I stated my crashes were like running out of glycogen, why am I still crashing when the amylase I'm taking with 5 caps is pretty high? Most mystery to figure out.

 

[BeADocToGoTo1]

Hi @grapes

It is important to dial in the amount of pancrelipase and stick with it. It sounds like 5 caps is a good level for dinner, so stick with it unless your stool changes.

Hormone rebalancing will take a while and will not be directly linked to the amount of caps you are taking. This includes things like serotonin and melatonin that impact your sleep patterns. And so, if you wake up a bit earlier one day, just go with it. Go for a walk perhaps. Don't worry about feeling sleepy, just view it as a signal from your body. You may have to take a nap in the afternoon or go to bed a bit earlier. Don't fight it. Set your alarm for 30-40 min if you don't want to give yourself a jetlag. How is your sleep hygiene (lights, temperature, air quality, electronics, noise level, etc.) ?

Working on any nutrient deficiencies with supplementation is important, as initially just digesting food better is not going to be enough to replenish. And, a lot of patience and pacing. I rememember overdoing it many times as I finally felt a sliver of energy and jumped on it. I had many setbacks and had to very slowly ease back into life. Once you have corrected the insult, your body still needs a lot of time to heal and rebalance. Make sure to set aside at least an hour in the afternoon to meditate/sleep/siesta and make it a consistent thing. I still do this multiple times a week even now that I am much stronger.

 

[grapes]

Hi @grapes

It is important to dial in the amount of pancrelipase and stick with it. It sounds like 5 caps is a good level for dinner, so stick with it unless your stool changes.

Hormone rebalancing will take a while and will not be directly linked to the amount of caps you are taking. This includes things like serotonin and melatonin that impact your sleep patterns. And so, if you wake up a bit earlier one day, just go with it. Go for a walk perhaps. Don't worry about feeling sleepy, just view it as a signal from your body. You may have to take a nap in the afternoon or go to bed a bit earlier. Don't fight it. Set your alarm for 30-40 min if you don't want to give yourself a jetlag. How is your sleep hygiene (lights, temperature, air quality, electronics, noise level, etc.) ?

Working on any nutrient deficiencies with supplementation is important, as initially just digesting food better is not going to be enough to replenish. And, a lot of patience and pacing. I rememember overdoing it many times as I finally felt a sliver of energy and jumped on it. I had many setbacks and had to very slowly ease back into life. Once you have corrected the insult, your body still needs a lot of time to heal and rebalance. Make sure to set aside at least an hour in the afternoon to meditate/sleep/siesta and make it a consistent thing. I still do this multiple times a week even now that I am much stronger.

I can sure see how right you are that it takes time to replenish the nutrients that I've lost. My hair is STILL falling out too much, in spite of everything I'm now doing in giving myself enzymes and eating high nutrient foods.

I am now using Creon, but only 2 caps per main meal. So far, that's working. And I did a blood test and my amylase was BELOW range. Now that explains why I've been crashing for five years. So I'm also adding plenty of amylase to my meals, plus using Vital Nutrients, which also has a lot of amylase in the mix--both to replace what my saliva is probably not giving me. So far, so good. Haven't crashed at all. Just hope to soon see the hair loss stop.

My only issue with sleep is that I always wake up before dawn. Drives me nuts. And I'm still sleepy!! So sometimes I read until I get sleepy again; sometimes I just lay there with my eyes closed. I sure hope to see that way-too-early waking up STOP.

 

[BeADocToGoTo1]

I can sure see how right you are that it takes time to replenish the nutrients that I've lost. My hair is STILL falling out too much, in spite of everything I'm now doing in giving myself enzymes and eating high nutrient foods.

I am now using Creon, but only 2 caps per main meal. So far, that's working. And I did a blood test and my amylase was BELOW range. Now that explains why I've been crashing for five years. So I'm also adding plenty of amylase to my meals, plus using Vital Nutrients, which also has a lot of amylase in the mix--both to replace what my saliva is probably not giving me. So far, so good. Haven't crashed at all. Just hope to soon see the hair loss stop.

My only issue with sleep is that I always wake up before dawn. Drives me nuts. And I'm still sleepy!! So sometimes I read until I get sleepy again; sometimes I just lay there with my eyes closed. I sure hope to see that way-too-early waking up STOP.

So you wake up when every farmer in the world wakes up. I would not worry about it. Whenever I wake up early like that, I will go for a walk instead of trying to go back to sleep. Nice and calm outside. Usually I will feel more tired in the evening and go to bed earlier. But, if your cortisol levels are spiking in the middle of the night, and your sleep is broken up, that is different to waking up a bit early.

Regarding the hair loss, this sometimes is also related to a thyroid hormone imbalance. But, it can also be nutrient deficiencies. Here is an interesting article on it:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5315033/

 

[bread.]

Since there are just a few very old posts linking pancreas issues with chronic fatigue syndrome, I write this in the hope that what I have learnt over the last 4 years might help others with similar life changing issues. It is an avenue worth looking into in your quest to feel better. It helped me from being bedridden with no hope in sight to a functioning human being again.

EPI is just one possible path to CFS, but in part due to the difficulty in diagnosing it, flying under the radar of most doctors and sufferers. I really think that there are many people who go through years of initially slow declines, misery and even an early grave either by their body giving out or suicide, without ever getting their exocrine pancreas function diagnosed as a possible culprit.

Like many here on PhoenixRising, my situation had stumped a few dozen doctors with varying specialties after countless blood, urine, and stool tests, ECGs, Ultrasounds, X-rays, MRIs, and CT scans. Four doctors mentioned specifically that my pancreas was absolutely fine. One stated that my issues were not pathological, and another even suggested looking into Prozac and a psychiatrist! It has been a journey of six years of unhealth, five years without knowing a pain-free day, four years of non-stop malaise, over three years of being homebound, where frankly life itself was torture. For those of you here suffering from chronic fatigue, pain or illness, you have likely suffered far, far worse.

Pancreas Background

There are 2 major areas that this little organ, that I did not even know existed before my life ground to a halt, is crucial for:

1. Endocrine. The side which handles the management of blood sugar levels in the body. It is very much in the news due to the massive (pre-) diabetes rates.

2. Exocrine: The rarely mentioned, but just as important side which produces the enzymes necessary to break down proteins, fats and carbs into usable nutrients. Without these we would slowly starve to death. Nutrient deficiencies can lead to metabolism issues, mitochondrial dysfunction and chronic fatigue syndrome.

Steps I Took to Get My Life Back

Since I wanted to find out what caused my health breakdown and how I could get better, I kept track of how I felt most days, including any symptoms, medical tests, food and supplementation experimentation, bodily insult lowering actions, as well as any interesting bits of information I gathered during my research.

Just a few examples of symptoms that were resolved in my case: malabsorption, nutrient deficiencies, heart arrhythmia and premature ventricular contractions, asthma-like breathing issues, pre-diabetes, hypoglycemia, low testosterone, sleep disorders, neurotransmitter issues, paresthesia, silent reflux, small intestinal bacterial and Candida yeast overgrowth, coordination issues, eyesight issues, brain fog, memory, temporary stuttering and dyslexia issues, many layers and areas of constant pain, microbiome dysbiosis, easy bruising, slow wound and soft tissue healing, debilitating weakness and fatigue, secondary mitochondrial dysfunction, triglycerides, HDL, homocysteine, and HbA1C levels.

Much of what I found was very surprising to me, as I thought I was always living a very clean and healthy life. A large part of the healing process was removing as many bodily insults, many I was painfully unaware of before all this.

so what did you do treatment wise?

 

[Flnn]

Hi Sundancer,

Thank you for the video link! It 100% overlaps my personal ME/CFS journey. I am going to reach out to Chris Armstrong with my findings in the hope that it provides more ammunition in the fight.

For years I have been boring anyone I know to tears with the importance of metabolite urine tests that should really be done by primary care physicians or family practice doctors as a standard check-up. I am hopeful that one day our toilets will perform metabolite urine and stool test as a normal daily process. Talk about helping prevent issues many years earlier!!!

The metabolite tests I did saved my life and pointed to:

- Pancreatic enzyme issues
- Small intestinal bacterial overgrowth (SIBO)
- Candida yeast overgrowth
- Mitochondrial issues
- Malabsorption issues
- etc.

SCFA (short chain fatty acids) that he mentioned in the video were also an excellent marker that was completely off in my initial comprehensive stool test, and was resolved after all the steps I had taken.

Can you please share the name of that metabolite urine test?

 

[BeADocToGoTo1]

Can you please share the name of that metabolite urine test?

Hi Flnn,
Great Plains Lab (Organic Acid Test - Nutritional and Metabolic Profile) or Genova Diagnostics (ONE or FMV) are ones I have used in the past.

 

[Flnn]

Hi Flnn,
Great Plains Lab (Organic Acid Test - Nutritional and Metabolic Profile) or Genova Diagnostics (ONE or FMV) are ones I have used in the past.

Great! Thanks a lot!