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Low Cortisol, Normal ACTH, blood sugar rollercoaster.


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Old 09-13-2018, 03:58 PM   #1
jong90
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Low Cortisol, Normal ACTH, blood sugar rollercoaster.

Hi,

I'm 28 m, and have recently discovered I have low cortisol, with normal acth levels. Taken at 8 am July 2018: 1.9 ug/dL cortisol; 14.7 pg/dl acth serum.

In 2013, I first had symptoms of mild insulin resistance and hypoglycemia in 2013. I did my own blood sugar tests because I was feeling sick after eating, dehydrated, and urinating often during the night. My postprandial blood sugar would be consistently in the pre-diabetic range at the 2 hour mark (160-180). About 3 and 4 hours after eating, my blood sugar would crash to hypoglycemic levels (60-65). My doctors then were not concerned as I did these tests myself, and especially since my A1C was in the normal range and my Comprehensive Metabolic Panel came back normal. Also, according to my doctors, another indicator I was healthy was that I was not overweight (I was slightly skinny in fact). He said my insurance would not accept my request to see an endocrinologist.

By 2014, I felt like I handled the situation myself by eating healthy and working out to gain a few lbs. My high blood sugar was no longer an issue after meals, but my blood sugar would still crash on an hourly basis--even without eating. I feel I have normal energy levels, when my blood sugar is between 90-100. But my blood sugar always crashes (incrementally) on an hourly basis until it hits 70--which is on the cusp of hypogelymica. In the mornings I go from 95 to 85. An hour later, I go from 85 to 70. During the crashes, which I can feel, I'm extremely drowsy). After I crash, I deal with extreme fatigue and brain fog. I still deal with this today.

Since 2016, controlling my blood sugar by eating was difficult, because I've started having moderate to severe indigestion and nausea with continual problems of fatigue.

In 2017, my Comprehensive Metabolic Panel once again came back relatively normal. But also in 2017, through an endoscopy, I was diagnosed with mild gastritis with no known cause.

Finally in July of 2018, they found low cortisol, but normal acth levels (numbers cited above). Now I'm finally being referred to a endocrinologist who will give me an ACTH stimulation test.

My concern is that I will pass this test and the doctors would say my low cortisol levels along with the other symptoms should be of little to no concern, especially, since my Comprehensive Panel is still normal.

I'm thinking I do not have Addison's or primary adrenal sufficiency, and so I will past this test. This is because my comprehensive blood panel shows I have no electrolyte, potassium, or sodium imbalances. In addition, I've had the same condition since 2013, although gastritis is a more recent issue. If I had Addison's, I probably would have gone through an Addisonian crisis by now. I've seen posts here and on other medical boards where people with similar symptoms explain that they have low cortisol levels, but normal acth, and that their endocrinologists do not know what's going on. But these posts are closed and old, and there are no updates.

I have also read that ACTH stimulation tests do not rule out secondary adrenal insufficiency, where lack of cortisol is caused by lack of ACTH due to pituitary gland problems. But then again, my acth levels are in the normal range. But I also read that secondary adrenal insufficiency can progress very slowly. So while my ACTH levels may be normal now, it might get progressively worse later.

I was wondering if anyone can help me out and make suggestions about what's going on, and what I should do if I pass the ACTH stimulation tests and the doctors no longer care. My fatigue has increased, I still have blood sugar crashes on an hourly basis (with normal a1c), mild gastritis (actually diagnosed through an endoscopy) and severe indigestion (according to me, not my doctors) with no known cause. My comprehensive metabolic panel still suggests I'm relatively healthy. I've had primary care physicians (at 2 different clinics) say for over five years my symptoms are either caused by depression or something called chronic fatigue syndrome; they finally seem to believe the issue is physical because of my low AM cortisol levels. I'm afraid, if I pass the ACTH stimulation test, they would treat me with the same incredulousness with which they've always treated me.

Sorry if this is long, and thanks for reading my post.

Best,

 
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Old 09-14-2018, 07:23 AM   #2
JohnR41
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Re: Low Cortisol, Normal ACTH, blood sugar rollercoaster.

You said you started eating healthy in 2014 but didn't elaborate. Since almost everyone has a somewhat different concept of what constitutes a healthy diet, I can't help but wonder what your diet is like.

In general, the recommendation for raising cortisol levels is to eat lots of whole grains, fresh fruits and a wide variety of non-starchy vegetables. Are you doing that? And how much is "a lot." I don't have any health issues and I eat mostly fresh fruit, vegetables, legumes, whole (intact) grains, nuts and seeds. That's what I call a lot. But I'm a vegan. Some people would say 7 to 10 servings of high fiber foods is a lot. For me it would be somewhere around 20 or more, as a rough estimate.

Last edited by JohnR41; 09-14-2018 at 07:34 AM.

 
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Old 09-14-2018, 07:51 PM   #3
jong90
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Re: Low Cortisol, Normal ACTH, blood sugar rollercoaster.

Hey JohnR41,

Thanks a bunch for responding. I never ate unhealthy foods often in the first place. In 2014, when I was 24, I started eating whole grain rice and bread, more protein (whey protein, chicken, nuts, and fish), fruits and vegetables. I also limited carb intake to 45 grams per meal, ate 5 meals a day, and worked out 5 days a week.

As of 2018, I've gained about 35 lbs since 2014. I'm 6.0, weighing 170 lbs, and apparently look very healthy. However, I do have trouble adding additional weight. I'm always cautious about weight loss. I'm on the thin side, but I have some muscle development, so I understand why doctors have been incredulous concerning my symptoms and overall health.

When I told my new doctor in 2017 of my constant blood sugar crashes, reactive hypoglycemia, and indigestion, the first doctor I saw didn't believe there was anything physically wrong with me: he said something around the lines of, "I understand that you're going through a lot of physical problems like fatigue and indigestion, but if the comprehensive metabolic panel comes back fine, will you see a behavioral therapist?"The second doctor I saw in the same clinic said something like this after the results: "Your tests are fine. You're young, you look healthy, and well-groomed [whatever the heck that means], and I also think you should see a behavioral therapist. I also think it is possible you have chronic fatigue syndrome."

I saw the behavioral therapist who actually told me he doesn't think anything psychological is causing my problems, and he referred me back to my primary physician. Hence the physician referred me to a gastroenterologist who found mild gastritis. The second gastro I saw after the tests apparently wasn't too concerned, even though there was no known cause: I didn't have H pylori nor do I take painkillers, smoke, drink alcohol, or eat spicy foods. However, the very first gastroenterologist I saw who ordered the endoscopy, suggested that I should see an endocrinologist, because he told me, based on my symptoms concerning blood sugar crashes, low energy levels, and indigestion, I was having symptoms similar to those his sister-in-law had when she was pregnant. Except, I wasn't pregnant, and I was a young guy.

From his recommendation, my primary physician ordered a cortisol test and found low cortisol--the first indicator that something physically may be wrong with me these last 5 years (besides maybe the mild gastritis). So now I'm finally being referred to an endocrinologist.

Again my concern is that if I pass the ACTH stimulation tests which for the most part rules out primary adrenal insufficiency (or Addison's disease), my doctors will again no longer believe I have anything physically wrong with me. I'm somewhat certain I will pass this test because my ACTH levels are normal, nor do I have electrolyte, potassium, or sodium imbalance.

Best,
J

 
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Old 09-15-2018, 12:20 PM   #4
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Re: Low Cortisol, Normal ACTH, blood sugar rollercoaster.

Did you tell your doctor you're taking a whey protein supplement? Whey protein has been known to decrease blood sugar levels.

Also, it's possible to have an allergic reaction whereby your digestive tract becomes inflamed.

Last edited by JohnR41; 09-15-2018 at 12:40 PM.

 
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Old 09-15-2018, 12:27 PM   #5
jong90
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Re: Low Cortisol, Normal ACTH, blood sugar rollercoaster.

Hey John,

Thanks for the reply. I am certain it is not whey protein. To be accurate I started whey protein in 2016, 3 years after the crashes occurred. I am certain it is not my diet causing blood sugar crashes and low cortisol. Everything I eat causes crashes. A small handful of nuts causes reactive hypoglycemia. Eating a slice or two of whole grain bread does the same thing.

Even if I don't eat anything, crashes occur every morning on an hourly basis, with or without food.

 
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Old 09-17-2018, 07:23 AM   #6
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Re: Low Cortisol, Normal ACTH, blood sugar rollercoaster.

Quote:
Even if I don't eat anything, crashes occur every morning on an hourly basis, with or without food.
The fact that it even happens without food may be an important clue. Let's say you have excellent muscle development from working out on a regular basis. So you get up in the morning and start walking around and doing whatever you normally do. At some point your blood glucose becomes depleted and your body starts converting stored glycogen. Perhaps the problem in your case is that your pancreas reacts in a way that it shouldn't by producing insulin. The result is that instead of the glycogen stabilizing your blood sugar, your blood sugar keeps dropping.

This is characteristic of hypoglycemia and is a possible cause of Chronic Fatigue Syndrome.

Have you ruled out this possibility?

Last edited by JohnR41; 09-17-2018 at 07:31 AM.

 
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