Adrenal Insufficiency: Looking for tips to manage digestive issues

As your post clearly underlines, @upartist, our bodies are complex and coordinated systems. When one system is out of whack, it can cause problems elsewhere. I'm tagging fellow members @astaingegerdm @retha @judy5140 @adamek3638 @krisjb1 @chals who have mentioned adrenal insufficiency elsewhere and may have some input to the areas of digestive issues that you're asking about.

Upartist, can you explain how you try to pace your use of hydrocortisone?

Thank you Colleen. I take a baseline dose of 10mg. If I have a prolonged intense pain event from the bowel, or syncopal event, or an ear infection for example, I know to increase to 15 mg for a few days. If the symptoms are vague, like fluctuating fatigue, the dosing is trickier. I try to keep the dose as low as possible. It is also tricky when I exercise heavy…. I seem to run low. Since my body still produces it’s own cortisol, I am pretty sure it makes fluctuations of its own. I also am aware that it is a hard thing to manage by both patient and physician. So strategies would really be helpful, though I realize one size definitely does not fit all. Thank you!!!

@upartist -It definitely is a challenge for you keeping your body in balance on a certain hydrocortisone dose when you experience frequent stress events.
Questions- How many doses do you take daily?
How often do you get any GI symptoms from partial obstruction?
With heavy exercise or in hot weather do you add extra salt in your diet?
My experience with cortisol imbalance comes from my daughter’s recovery from Cushing’s Disease. She had a pituitary adenoma.
What recommendations do you get from your endocrinologist?
The recurring GI problem makes management difficult

Hello Ingerde, I hope your daughter is doing well now. My daughter had a macro-adenoma removed at 17. She is doing well now, at 38, with no latent issues, and is monitored regularly. Her older sister has a small prolactinoma which is treated with medication (?). So that must have been hard for you. I know that for sure. As for salt, I am continually navigating salt with intention. Sometimes I dehydrate spontaneously, but I will supplement it. It’s pretty clear when that happens. I have a ridged bowel regimen and require both miralax and linzess to manage motility. The liquid in the bowel appears to be a big player. I use soup to access soluble vitamins and minerals, as I am now having trouble with raw vegetables and meat in general. My GI issues have tater a recent turn for the worse, secondary to an unrelated medication (discontinued of course). My dosing is 10mg at 5:00am with my synthroid. If I need the extra, I take 5 at noon, sometimes another 5 by 2:00. I carry an alarm clock because there are other timed meds I take. Right now I am battling a pseudo obstruction. It’s frustrating. Thank you for your support.

It’s unusual that both your daughter and your sister has pituitary adenomas. I’m glad your daughter is doing well. My daughter is also 38 and has not had a recurrence. May I ask how you developed adrenal insufficiency?
The fluid movements in the bowel also causes fluctuations of the salts- such as loss of potassium with diarrhea. Also- the salt levels interfere with motility- pseudo obstruction maybe?
Do you have a good endocrinologist?

Hi Engegerd. It’s actually both my daughters with the adenomas. There appears to be a strong family history as well. My grandmother died of the complications with her adenoma at 42, a very long time ago. I have had imaging of the head in the past, to rule it out on me. I only had a consult with an Endocrinologist who did the testing, and my primary care Doc helps me navigate the dosing in the overall plan. However, the nuances of fluctuations is in my hands. We suspect that I have non-classic CAH-21, because my daughter is a carrier (found by chance during fertility bloodwork). Hers points towards me. That genetic anomaly can affect the adrenal function, and is likely the culprit in my case. But past that point, I have had no guidance. There is only so much testing that can be done, and I do have other bodily systems which appear to be effected. Since I fluctuate so much… my heart, my digestion, my vision, my energy….. I can look like an active athletic older woman one day and regress to sickly and in great pain the next. Basically it’s been hard to manage me… from the doctors position…. And from mine. I have good physicians on my side, but I realize My issues are complex and multifaceted. One disruption causes a major domino effect. A bit too much intensity in exercise, a bit to much fiber, a bit too much heat or cold, not enough sleep, medication side effects…. They are all potential triggers. So I try to maintain an even schedule of things. I do have a partial obstruction of the bowel, that I believe I might be coming out of as of yesterday. Not sure yet. But, I appreciate you giving me this chance to vent a bit with listening ears. Has your daughter experienced any of these issues? If so, how has she managed them?

Have you heard of collagenous colitis? It’s only diagnosed through biopsy during a colonoscopy. (Also known as microscopic colitis). Some of your symptoms sound like it.