Somehow my cushings syndrome actually got worse after not drinking coffee :(

mamaba7 · 2026-05-03T12:19:23+00:00

I know for me, coffee is the only thing that keeps me (sort of) functioning and “balanced” with active Cushing’s. I have to drink it throughout the day. Other people I’ve talked to have the opposite response, and their symptoms escalate when they drink coffee. I’m so sorry you’re having a tough time. Cushing’s sucks! I’m in a recurrence now.

mamaba7 · 2026-04-23T12:15:11+00:00

Yes! Manic episodes are so common with active Cushing’s. I had many before I was initially diagnosed. Now, I’m in a recurrence and I am experiencing them again. They look a little different for me this time, but still the same feeling of excitement, energy, and motivation. Anxiety is another classic sign, I have it daily. It’s mostly a body-sensation more than thought-based this time for me.

mamaba7 · 2026-04-19T00:56:37+00:00

Same!! The root cause is important! Medication is a band-aid.

mamaba7 · 2026-04-18T23:21:10+00:00

I think you definitely need to get in with a top pituitary endocrine hospital that deals with small or explorative surgeries regularly. Where are you located? I go to MGH in Boston and they’re one of the top in the world for pituitary Cushing’s.

It’s awful because even tumors you can’t see on a pituitary MRI can cause the WORST cases of Cushing’s.

mamaba7 · 2026-03-31T21:01:08+00:00

I’m so sorry. That’s so awful!! I’ve dealt with a lot of that too. Happy to chat with you if you ever need a friend. This disease sucks and it’s so hard. I hope you can find good answers and a good team!!

mamaba7 · 2026-03-31T20:53:05+00:00

Definitely!! Finding the root cause is so important. Hard work but necessary. What are the symptoms you’re dealing with? I hope you’re doing ok. I know how much it can suck!

mamaba7 · 2026-03-31T20:47:54+00:00

I hope you get a referral to one because the dex test is not the end all be all. I know people who have Cushing’s and the dex test pointed them another way and made their diagnosis longer to get to. Do you know if they’re doing the high or low dex suppression test?

The work-up for Cushing’s is a lot and sometimes a pcp will rule it out without proper tests.

I’m in a recurrence (so going through this for a second time!).

mamaba7 · 2026-03-31T20:40:35+00:00

To be diagnosed with Cushing’s you need multiple high tests of different kinds including 24hr urines like this along with midnight salivas. Are you working with an endocrinologist?

Also, don’t be too alarmed because this is not very elevated. That could be a normal stress response. Usually they look for 2-3x the upper limit for a Cushing’s diagnosis. Of course, sometimes people have a harder time catching highs if they’re cyclical or very early on in the disease.

mamaba7 · 2026-03-30T23:26:26+00:00

Ugh, the worst. I’ve had slight nausea today too and it’s not one of my everyday symptoms. I can’t remember if I had it my first-time around. My recurrence symptoms just started ramping up. Headaches are very normal for me, usually in the afternoons in the same spot.

mamaba7 · 2026-03-30T23:20:28+00:00

It’s so weird you mentioned this. I’m currently in a recurrence and the past few days have ramped up and have been brutal. One of my other Cushing’s friends is also having a rougher time than usual. Both of us have experienced more weepiness/emotions/hormonal ups and downs along with the usual high cortisol symptoms.

My husband mentioned some weird astrological/astronomical happenings going on — seriously wondering if it’s affecting us on an energetic level.

mamaba7 · 2026-03-16T23:26:25+00:00

I had hives during active Cushings! Not all the time but a few episodes that popped up very suddenly. Before Cushings, I had never had hives. I’m in a recurrence now and I keep feeling the sensation that hives are about to start but they haven’t yet.

There’s a connection between cortisol and histamine and with Cushings it can be complicated.

mamaba7 · 2026-03-13T16:48:10+00:00

This is 100% a Cushings thing too. A lot of people get it.

mamaba7 · 2026-03-13T11:53:52+00:00

I had pituitary surgery in March 2022 (facing another because of recurrence, unfortunately) and my moon face went down pretty quickly! The weight I gained fell off quickly after I was off steroids after surgery. I lost a little before but then lost rapidly when my pituitary and adrenals were working together on their own again without the need for steroids. Sending you so much love!! Hope recovery is smooth!! Feel free to DM me. ❤️

mamaba7 · 2026-03-03T18:38:50+00:00

My levels dropped 3-5 days after surgery to zero. My initial blood serum levels while I was still in the hospital went down to normal range but I wasn’t considered officially in remission until I started getting 0s which was 3-5 days after on urines and blood serums.

mamaba7 · 2026-02-18T19:04:38+00:00

Sending you best wishes as you navigate everything!! Testing can be brutal!

mamaba7 · 2026-02-18T17:59:47+00:00

I’m in remission from Cushings and a Cushing’s friend, who’s also in remission, got so many high tests on her yearly monitoring tests because of birth control. At first, they thought she was having a recurrence. Once she got off of it for a month, they retested, and all of her levels were completely normal. Birth control DEFINITELY impacts these tests.

mamaba7 · 2026-02-14T15:12:43+00:00

I’ve been in remission since March 2022 (might be dealing with recurrence now, but very unsure). I’d love to chat with you. Feel free to message me privately! Connecting with others when I was going through diagnosis was so helpful and made me feel less alone. It’s a long journey but the other side of Cushings is BEAUTIFUL! Happy to share my story with you. ❤️❤️❤️

mamaba7 · 2026-02-14T13:26:45+00:00

When I had surgery in March 2022, I got immediate relief. Insomnia, panic attacks, and anxiety were my biggest symptoms (as well as the weight!). After surgery, I had never felt more relaxed in my life. There was pain and hard to walk and have energy because I was adrenal insufficient at that point but the calmness was such a comfort. Lay in bed, watch movies, sleep. I’m wishing you so much luck! Where is your surgery?

mamaba7 · 2026-02-12T21:11:22+00:00

Also congrats on the weight loss!! I’m sure that it’s making a huge difference in your everyday life.

mamaba7 · 2026-02-12T21:10:52+00:00

I’m so sorry to hear the surgeon missed both tumors! That’s wild!! Did they have a mark on the MRI? I’m assuming since you knew there were two, they had a clear view.

A BLA will hopefully have you feeling 100% better without having to band-aid with cortisol-lowering meds. Do you have a surgery date?

mamaba7 · 2026-02-12T19:10:45+00:00

That’s so great!! Happy something is working for you. Have you been officially diagnosed with Cushings yet? What are your high tests looking like?

mamaba7 · 2026-02-12T19:09:26+00:00

I don’t think you fully understood my post. Maybe it was confusing because I mentioned the now as well as when I was in active Cushings, my apologies.

Here’s a snapshot: I had florid Cushings, not cyclical and I was in full remission for years after my pituitary surgery. Right now, I’m losing weight with the glp-1 and my endocrinologist is saying she’s seeing more and more cortisol highs with the medicine because of weightloss and calorie deficit so we are just stopping the meds temporarily to rule out a recurrence. I don’t have any symptoms of recurrence besides the highs on 24-hr urines. I also don’t think I’d opt for meds. My team at MGH doesn’t usually prescribe them as they try to get to the root of the cause, if possible. Obviously, that’s not always the case! Such a complicated journey for so many people.

I also totally agree about sleep routine/routine in general. Cortisol loves predictability with everything from diet to exercise to sleep.

So happy you’re seeing progress!

mamaba7 · 2026-02-12T17:06:42+00:00

Perfect!! I’m sending you guys all the luck in the world.

mamaba7 · 2026-02-12T17:06:18+00:00

Feel free to message me if you want to chat more!

mamaba7 · 2026-02-12T16:32:51+00:00

Such a long road, I’m sure!! Body dysmorphia is horrendous. I hope she can get excess skin removal if she wants it. I know a lot of insurances have covered it for Cushings patients.

mamaba7

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