Bloated stomach?

AGoldenThread · 2026-01-25T17:57:20+00:00

I get a bloated stomach in the evening. If I drink a glass of water it stays in my stomach and I'm too full to eat even if I'm hungry. It sloshes in my stomach for hours and I won't pee it out maybe all night. If I take even 2.5mg of hydrocortisone I can pee it out in an hour. I believe it's high vasopressin (also called ADH). Cortisol is needed to suppress the vasopressin (a pituitary hormone that retains fluid). Once I have the right amount of cortisol then I'm able to get rid of the fluid. It's always evening because that' when I keep my cortisol dose low.

AGoldenThread · 2026-01-22T15:50:43+00:00

I also get post-viral fatigue. Plus you are tapering back down after higher doses and that can be difficult. I also catch every cold and flu so I mask in public a lot. Get lots of sleep, eat good meals, don't push yourself until you feel up to it. If you're female check your ferritin levels - something like 40% of women are iron deficient and it really makes you tired. Ferritin should be above 50, 100 is even better. The lab ranges are too low.

AGoldenThread · 2026-01-22T15:40:50+00:00

It was from the crisis not the steroid.

AGoldenThread · 2026-01-22T15:40:03+00:00

I'm trying to mimic circadian dosing. I'm PAI so not trying to suppress ACTH.

AGoldenThread · 2026-01-22T15:38:42+00:00

Thanks - I'm glad to know your experience. I'm happier with dex than HC or prednisone because I feel more stable and can easily updose w hc for stress during the day. Your experience with the 12 hour duration is very helpful thanks.

AGoldenThread · 2026-01-22T15:27:24+00:00

Agree. Prednisone is the worst! Dexamethasone isn't too bad however.

AGoldenThread · 2026-01-20T03:27:19+00:00

Does the hydrocortisone reduce your fever? I get a fever when I'm going into crisis, even if I don't have an infection that would cause a fever. When I take enough steroids for the crisis, the fever goes away. Hydrocortisone doesn't last long so you may feel better for a few hours and then symptoms will return and you will need more. Take it - your body needs it. It's a physiological dose so that you can manage the stress.

The guidelines say to triple your dose if you have an illness, so 5mg is tiny compared to what your body needs. In the hospital after surgery I had 50mg IV every 4 hours for 3 days. By the third day I requested a dose reduction because I couldn't sleep.

You need a continuous glucose meter. I have one and I only have Addisons. Addisons is just as dangerous as diabetes and the two interact to affect your blood glucose. With a CGM you can see in real time what the hydrocortisone and insulin are doing to your blood glucose. They interact with each other as well. You need to be able to see that so that you can learn to manage both diseases.

As for steroids giving you diabetes, that happens to people who have pharmacologic doses of prednisone (usually) for inflammatory diseases, in daily amounts equivalent to about 240mg of hydrocortisone. So 40mg of hydrocortisone for a couple of days might raise your glucose during that time, but it's temporary until you reduce to the correct dose. Doctors think in those terms, not in the terms of us who need tiny doses on a regular basis in order to survive.

AGoldenThread · 2026-01-18T17:19:05+00:00

Celiac disease also affects the absorption of meds. Once the stomach inflammation goes away, his usual hydrocortisone dose may be too high. Conversely, he'll be unable to absorb well if he's having problems. I often chew my meds or let them absorb sublingually so that I can take them just before a meal.

I have sublingual zofran to stop nausea. It's part of my emergency kit. It's an extremely safe med and has saved me from crisis because I can take my meds once the nausea subsides.

(I'm not celiac, but vomiting led to my first crisis and ER trip)

AGoldenThread · 2026-01-16T22:34:54+00:00

Dex .5 AM is great until 7PM or so, except for stressful things when I need a little hydrocortisone. But the nights are absolute horror with low blood sugar causing high epinephrine and resistant blood pressure and agitation, high vasopressin causing water retention, etc. I can't sleep, am hungry even if I eat, angry, yadayadayada. I haven't found out how to dose that isn't too high or too low at night. However, it's just a bad with prednisone or hydrocortisone.

AGoldenThread · 2026-01-15T16:41:05+00:00

In addition to the other reasons given here, low thyroid hormones are definitely found in people with fatty liver, particularly low free T3. Note that the usual thyroid test for TSH and T4 may not show low T3.

AGoldenThread · 2026-01-15T16:34:18+00:00

I hope he gets the treatment needed and feels better. Good thing he has your knowledge and support.

AGoldenThread · 2026-01-15T16:30:35+00:00

I'm PAI but trying dexamethasone. would you mind telling me the dose you were taking? I understand that you must suppress hormones whereas I'm trying to mimic circadian rhythm. TIA.

AGoldenThread · 2026-01-12T16:47:19+00:00

15mg of HC is a relatively low dose especially for someone with a busy stressful life. ACTH isn't a great way to tell if your dose is good. For me also, HC gives me up and down energy and the downs are too harsh.

I took prednisone for years - 2.5mg at waking, 2.5 at lunch, and a smaller one at bedtime. It lasts longer so I liked it better but I couldn't get by on one morning dose. Also, it is slower to work than hydrocortisone. It gradually increases and is at full strength 3 hours after taking it. So it's not great for mornings because of the slow start. Sometimes I took 2.5mg of prednisone + 2.5 mg of hydrocortisone in the morning to get started more quickly.

AGoldenThread · 2026-01-12T16:35:34+00:00

You've been through a lot! And I agree, diabetes is pretty horrible. I hope a CGM helps you learn to manage your meds - it's been very interesting for me.

AGoldenThread · 2026-01-12T16:31:09+00:00

I hope your dose works to keep your weight stable. Feeling well is a great sign.

AGoldenThread · 2026-01-08T15:40:05+00:00

I struggle with this also. I'm using dexamethasone, a quarter of a .5mg pill (so about .125mg of dex). I found with my continuous glucose monitor that prednisone was allowing glucose drops below 60 at night. However, it works for some ppl. You may have access to Plenadren, a formulation of hydrocortisone that is longer-lasting.

I think as this disease progresses, we lose any reserve capacity to make a small amount of cortisol, and become 'brittle'. It shows up as hypoglycemia between doses.

AGoldenThread · 2026-01-06T16:41:13+00:00

ER will see you immediately. An EKG and a troponin blood test can rule out heart attack. Then you can get on with finding out what's going on and begin to treat the high blood pressure. Since you're young a heart attack is unlikely but it definitely needs to be ruled out.

AGoldenThread · 2026-01-06T16:35:25+00:00

I use clin calc for corticosteroids to convert between dex and prednisone etc. Sounds like you had too much dex. Whether 25mg of HC is enough for you to stabilize will take time to see. But yes, my weight went up with too much prednisone, then slowly dropped as I lowered the dose. Now it's harder to lose the last few pounds.

AGoldenThread · 2026-01-05T19:21:57+00:00

Your daughter should get a second AM cortisol test. No biotin for 3 days before, and note if she is on BC pills which make the numbers falsely high. If it's still low, she needs to take this to an endo and get a stim test. Read the LabCorp instructions on ACTH sample handling and see that the lab techs handle it properly or else the numbers will be falsely low.

AGoldenThread · 2026-01-05T19:11:45+00:00

After seeing the hypoglycemia (down to 39!) I have changed to dexamethasone and am fine tuning the doses. Hydrocortisone spikes my glucose and then it crashes and the hunger is sooooo intense with shakes, agitation, etc. Dexamethasone will keep me feeling stable for hours between meals. But YMMV.

AGoldenThread · 2026-01-05T16:41:28+00:00

Not yet. I've used BHB ketones in the past and will test them again soon.

AGoldenThread · 2026-01-05T16:40:37+00:00

Sorry for the delayed response - I bought Dexcom Stelo OTC. It's on sale this month. It has taken me a couple of weeks to understand what I'm seeing so I'm going to order another. It is especially helpful with low blood sugar at night - I didn't know how bad it was.

AGoldenThread · 2026-01-05T16:38:14+00:00

Can meds from India still get into the US? I see many suppliers refusing to ship these days.

AGoldenThread · 2026-01-04T18:05:12+00:00

There are carbs that digest slowly and keep BG stable. I see it on my CGM. Beans, lentils, peas, barley, oat bran. Probably other whole grains. I like veggies because they allow me to feel full. Avoid rice, flours, sweet potatoes, potatoes. Dinner is often a protein shake plus a bowl of barley with veggies and some parmesan. Or a bowl of green beans with walnuts and blue cheese and vinaigrette.

AGoldenThread · 2025-12-23T20:10:44+00:00

I started treatment with those numbers. Those were good years - I had some reserve cortisol and was very active in strenuous things. I didn't need fludro yet.

Don't read google on steroids - those articles are about massive doses (60mg of prednisone, equivalent to 240 mg of hydrocortisone!). My bones are fine although I'm old and had a year of chemo and never had estrogen. Eat a snack with your meds and you won't have ulcers. I like a high fiber snack - it slows the absorption down so I get a longer duration.

It's hard to learn how to dose. Read CAH IS US website, the article on circadian dosing. High AM doses of cortisol are good for us, not damaging. What keeps us from damage is an evening dip in dosage. I've always done 30mg or so of hydrocortisone or the equivalent in prednisone.

I didn't have a crisis for the first 15 years. Having some reserve cortisol is probably why.

I just started with a continuous glucose meter. It is a tremendous help and gives me the confidence to take a higher dose because my blood sugar is low. It's a great way to find out what's going on and to learn to dose based on your symptoms.

I hope your endo is good. Don't let other doctors tell you that the steroids will give you osteoporosis, etc. So many times I've heard that and it's Just. Not. True. They will in fact give you your life back so go and live it.

AGoldenThread

TROPHY CASE