What is going on here? If this isn’t Cushing’s, what is it? Why am I being denied post-op treatment after a failed surgery?

What is going on here? If this is not Cushing’s, then what is it? Why am I being denied care post-op?

These are just some of my labs. I’ve had high cortisol in all three testing mediums since 2018. Had a botched case where my tumor was missed on mri at three separate institutions only to be found in 2023 by a local endo and confirmed at Columbia by a neurosurgeon there. I was dismissed as side at Yale, MSK, and Weill-Cornell in 2018. Tumor was found in 2023 on multiple MRIs done locally and then at Massachusetts General Hospital, where I had pituitary surgery to remove the 4mm adenoma in June.

It failed. But now they’re saying I have pseudo again, however since surgery my acth is now in the teens and lower but cortisol simultaneously elevated. I asked about adrenal autonomous secretion due to hyperplasia since I had years of untreated hypercortisolism, at least 10-15 years of symptoms. I was refused cortisol meds and an adrenal ct scan. I was previously told my levels of 4x, 5x 7x and 10x the ULN is not seen in pseudo cushings and this is cushings disease but now I’m being told pseudo and my most recent saliva was 3.5x the ULN.

I’m not doing well and I keep getting worse again. I have erratic cyclic cortisol levels and I often have episodes of adrenal insufficiency with crisis symptoms. My endo is denying my pathology found anything but it clearly says specimen B stained for the transcription factor TPIT and had discohesive epithelial cells, and oftentimes small pituitary adneomas can have function cells in only a small portion of the adneoma. This is a pretty positive leaning pathology report but obviously had a scant specimen, which limited the results however TPIT staining plus the discohesive epithelial cells are highly suggestive of this adenoma being functional, plus the neurosurgeons assistant called me after surgery and said it was likely causing CD and said basically the same thing about the TPIT. What is going on? I’m struggling to get help and when I try to transfer I just get refused appointments. I feel I’m being stonewalled or blacklisted, and I don’t really know where to turn now.

I have applied to some NIH studies. I am emailing the PNA for guidance and suggestions but I’m really at a loss. I get severe highs pretty often, i have physical symptoms, my QOL is really trashed. It sounds paranoid but I feel like my case is being swept under the rug out of liability concerns considering my history. If they are worried they could make me worse with a block and replace treatment approach or a second pituitary surgery or a BLA, fine. Just tell me that. But that’s not what’s happening, I’m being told “nothing to see here” while still suffering with elevated cortisol and now low acth.

I have what I call episodes of “cortisol storms” where I peak super high and I develop severe symptoms and then I crash and develop AI and crisis like symptoms. My face and body change lately during these times. The photos in my moon face collage are only months apart in some pics from the before and after. My last AI crash, which is horrifying and honestly worse than the high cortisol, was in 2023. By September I looked like myself again. In February of 2024 I developing the cushingoid phenotype again and by April 2024 I was up 30lbs and now I think I’m up 40-45 lbs and cannot budge it. My face is swollen but it varies daily. Sometimes less sometimes more. Not as bad as the photos here but it’s not normal and not me. Cosmetic shit aside, I can’t live this way physically and I feel beaten down and the AI episodes that happen are debilitating along with the cortisol peaks. I just want help.

The photos are embarrassing but I just don’t care anymore. This is what happens to my face and it’s not from overeating weight gain. It changes so quickly and I go in and out of this, one month I look bloated and the next I look gaunt.