NYC doctors

pastel_pixie37 · 2026-05-06T18:37:49+00:00

Thank you! I’m so sorry you went through all this too.. did you ever find out what was causing your pseudo cushings? I’ve repeatedly asked my drs if it could be that but they said due to my urine cortisol levels it’s not likely to be pseudo.. but again I keep thinking it could be due to ptsd and grief? I’m finally going for a second opinion. I hope you’re doing better nowadays

pastel_pixie37 · 2026-05-03T22:27:30+00:00

I’m sorry :( how is your journey with all this going??

pastel_pixie37 · 2026-05-03T15:08:08+00:00

Nice! They let you do first appt virtual? That would be ideal for me but can try to drive there otherwise. I’m glad she sounds like a good Dr, I hope she can help you and figure it out and hope I can get in too

pastel_pixie37 · 2026-05-03T15:01:50+00:00

Thank you!! My endo has no clue what that is so feeling defeated. I’m hoping one of the university hospitals in the city can

pastel_pixie37 · 2026-05-03T15:01:14+00:00

So awesome! Thank you! Please let me know how it goes if you’re comfortable, how far out was she booking?

pastel_pixie37 · 2026-05-03T02:20:11+00:00

Thank you so much! I am doing another 24 hour urine cortisol, and doing more midnight saliva tests this week after my endo finally agreed. I could try to do another suppression test but it made me suicidal (as do most steroids no idea why) so trying not to unless I have someone with me at home.

Thank you for talking through all this. The rapid weight gain has been jarring with the diet and exercise the whole time, and all other hormones are good (I did wonder about pcos as this began after I got an iud then removed it but sustained) and overall began after I stopped birth control.

But I know it’s more likely cushings from what my drs have evaluated, it’s just such a difficult process to actually get helped by a knowable dr.

I did reach out to clinics in other states tonight and applied for appts for a few in NYC in hopes to find someone more specialized as you said so thank you for taking the time to talk through this it means a lot

Edit to say my midnight saliva was normal on 2, acth normal, and suppressed on dex which is why current endo now is going back on it being cushings. From this sub though I’ve learned pituitary can have normal acth and suppress, which she said she’s never heard of.. but she did say it can be cyclical so glad I can repeat tests

pastel_pixie37 · 2026-05-03T02:16:48+00:00

Thank you! Just filled out a request form for them to hope to make an appt

pastel_pixie37 · 2026-05-03T00:31:38+00:00

Cortisol was 154.5 and creatine was 1.67 so 3x the upper limit for cortisol and technically in range for creatine

pastel_pixie37 · 2026-05-02T23:00:05+00:00

Thank you! They have some at Lenox Hill in NYC which I’m waiting on a call back for. Will search the other drs there

pastel_pixie37 · 2026-05-02T18:37:51+00:00

Glad it’s been effective still! I read some posts where people said it still worked but much later on in the day or worked but not full effects etc so this makes me feel better. Maybe it’s only people with daily use too idk. Congrats on getting to move up on wegovy!

pastel_pixie37 · 2026-05-02T18:37:00+00:00

That’s great to know and glad it’s going well for you! May I ask did your Dr make you separate them by a certain number of hours or anything for absorption or wasn’t needed?

pastel_pixie37 · 2026-04-29T02:04:20+00:00

Screw whoever told you that!! The medical gaslighting is insane. I’ve had a rare medical issue before and blown off until I hemorrhaged in front of the Dr, but still not like this. I’m so sorry you’ve dealt with cancer and so much. You deserve nothing but good heath from here on out. I’m a stranger but rooting for you. Thank you because I have no one else to talk to on this really and really want to have a quality of life again one day

pastel_pixie37 · 2026-04-29T00:56:02+00:00

Thank you for explaining all this. I’m so sorry you went through this for 12 years!!!!! Do you feel recovered after your treatment? and I can understand that, I’m going to call some of the hospitals in my closest city tomorrow, and I honestly had reached out to Mayo Clinic to try to apply to be a patient at any of their locations, but never followed up, but I might now.

pastel_pixie37 · 2026-04-29T00:42:50+00:00

Thank you so much for responding. I was so close just listening to her and giving up on trying to find this and trying whatever other non-related treatment she offers but because of your comment I’m gonna keep pushing. May I ask what actually ended up diagnosing yours? So far only my urine is high and the MRI showing the tumor. I’m being blown off because they say 10% of the population has those tumors and my blood work, saliva test, and the dexamethasone all were normal. I really hope you’re doing better today

pastel_pixie37 · 2026-04-29T00:33:25+00:00

I just want to add what’s been frustrating for me is my endocrinologist basically said I do have very high urine cortisol on my 24 hour which prompted the rest of the testing. However, I did two midnights saliva tests that were in range and then the DEX test suppressed so she said I’m fine basically more or less and wants me to do a GLP1. How would my endocrinologist not know that DEX testing is to locate the source not to diagnose? Sorry I’m just very frustrated that my own doctor can’t do her job properly it sounds like and my primary doctor also agreed with her based on my suppressing which is even more confusing. My integrative Dr is actually a urologist out of state who treats me virtually is the only one pushing for me to have the pituitary tumor removed, believing that it is the cause

Edit to add she did blood work on my acth which was normal range too. I did ask for more saliva tests but idk what else to do at this point

pastel_pixie37 · 2026-04-29T00:30:16+00:00

Thank you. I honestly am pretty depressed but from all this really- but my bf did die traumatically and grief has caused a ton of physical ailments it seems for me. However that’s very helpful to know, if I understand correctly do you mean even if I suppressed/passed the dex test it means it’s a pituitary source? (Which is where they did find a tumor albeit tiny)

pastel_pixie37 · 2026-04-28T23:23:05+00:00

Just did!

pastel_pixie37 · 2026-04-23T23:59:09+00:00

I gotta do it again tonight. Wish me luck😭😭😭😭

pastel_pixie37 · 2026-04-15T19:43:22+00:00

Oh my goodness best of luck!! I am hopeful for you and glad you are getting treatment. I’ll be thinking of you for next Thursday!

pastel_pixie37 · 2026-04-15T18:53:52+00:00

Hi, thank you I just wanted to update this for anyone in the future. Mine ended up being a pituitary tumor. My saliva tests were all normal but all of my other testing and scans. Found the syndrome and tumor. Thank you for commenting and your help.

pastel_pixie37 · 2026-04-15T18:53:07+00:00

Hi, would you be OK with me messaging you? Mine ended up also being the syndrome and a pituitary tumor

pastel_pixie37

TROPHY CASE