I am Noura and I have Cushings Disease and PCOS! Follow me on TikTok and Instagram @Chronicallyyours_ www.tiktok.com... www.instagram.... Don't Forget To LIKE and SUBSCRIBE! xo
Literally this needs to be talked about!! I self diagnosed two years ago and finally am diagnosed now looking for source, 3T MRI is coming soon, the 30th. I am so enraged with my Endo! She won’t DX me without a urine, but I have 7 salivas (up to 760-1000 ng/dl between 11:30pm- 12am) but urine is normal Bc NO 17-OHCS, can’t even find it at the labs, no longer “orderable” but I found one lab who has it. So let’s pray she orders it for me. I’m 16 years into my disease and had severe cardiac damage found and “repaired” in 2016 and have vascular damage, osteoporosis, I throw my back out by coughing. Been in my highest highs ever for the last two years been entirely manic, still am! This is been for years being dismissed to psych, “psychosomatic” symptoms disregarded. I am HALLMARK Cushings, and look ridiculous and have for many years. I have a neurosurgeon in NYC trying to get my insurance to cover his hospital - Dr Langer at Lenox Hill in Manhattan. He says upcoming MRI will likely show nothing (I have a 1T/2T full brain from March 2021 shows pit, unremarkable) and will need IPSS. My Endo though is useless and dismissed me when I met her (she’s not the first or second or third this is 16 years in…) told me it’s NOT Cushings. I went home and book w Dr F. I see him in like two weeks!!!!!! So anything she hasn’t done, he will do. I thought it would be hard to catch highs - NOT! Most are high, a few normal. Several, and high blood. But no high urine Bc not ordered properly! My @ home urine cortisol tests from Vessel Health are ALL HIGH at about 320ng/dl but they “don’t count” If this woman does not begin to show some action I am filing a complaint and also getting a lawyer. I am also a single Mother of a beautiful and healthy 5 year old son. I am enraged to say the least. Idk if my current Endo is so arrogant she can’t admit she was wrong, or what?! Bc my levels MORE THAN diagnose me!! They’re 8x normal, lowest in AM albeit still high in AM, zero circadian rhythm. You don’t have to be a physician to tell as it’s pretty obvious. I saw her on Tuesday and she again told me it’s not Cushings. I was shocked, Bc it surely is (labs are 8x normal) so I emailed her afterwards. She NEVER REVIEWED MY RESULTS. She only had “two that were listed in Epic” this woman is LITERALLY useless and idk how she graduated HIGH SCHOOL much less medical school. And get this- she is an Endocrinologist PITUITARY/Cushings Disease Specialist!!!!! Oh let’s not forget to mention the obvious other labs, GROSSLY deficient growth hormone and prolactin. I make nearly zero. I could not breastfeed Bc no milk. Zero. My inflammatory markers like CRP, lactate are high, and TPOantibodies are 1859 - so she DX Hashimotos. Which is correct, and a CONSEQUENCE of untreated CUSHINGS. She RX me levothyroxitine, which if I would consume would RAISE MY CORTISOL and potentially kill me (already have heart palps and extremely high BP for YEARS) This experience has been terrifying. Not “dissatisfying” but SCARY AS FUCK.
I'm so sorry you've been through all of this. Trust me, I completely feel you. It's crazy how many hoops I had to jump through to get to where I am today.
@@Chronicallyyours_ Noura!! I’ve had major progress since I commented. I went to Dr F at UCLA, but he wasn’t aggressive enough for me. So I found another new Endo who DID refer me to Neurosurgery and NeuroEndo - my pituitary MRI from 6/30 was read as normal! But it’s not. In fact it looks like multiple lesions!! I also have atrophy of my brain 🧠 and SEVERAL white matter lesions. I was supposed to meet NeuroEndo on 9/28 but it’s been moved up to 8/10 per the Neurosurgeons request. Which is scaring me, but I am anxious as hell for treatment. Finally there is an end in sight. Last month I did file a formal complaint on my former “Cushings Specialist” Endo who refused me access to care. I’m just appalled. Medical gaslighting happens to probably most all women at some point in their lives. But it does seem the CD population are ALWAYS told their ailments are “psychosomatic” or due to “stress” Just enrages me. How is your recovery going? You’ve had complete remission/cure right? Do you feel significantly different since being sick? You look beautiful 💜 thank you for sharing your story. You sharing is what led me to demand my own proper evaluation. 😘🤗🙌🏻
@@Chronicallyyours_ no surgeons aren’t the problem, they tell me they need the neuroEndos “okay” before they can operate. It’s my inept NeuroEndo. I fired her. Waiting on Dr F now. Such a nightmare!!!!
Literally this needs to be talked about!! I self diagnosed two years ago and finally am diagnosed now looking for source, 3T MRI is coming soon, the 30th. I am so enraged with my Endo! She won’t DX me without a urine, but I have 7 salivas (up to 760-1000 ng/dl between 11:30pm- 12am) but urine is normal Bc NO 17-OHCS, can’t even find it at the labs, no longer “orderable” but I found one lab who has it. So let’s pray she orders it for me.
I’m 16 years into my disease and had severe cardiac damage found and “repaired” in 2016 and have vascular damage, osteoporosis, I throw my back out by coughing. Been in my highest highs ever for the last two years been entirely manic, still am!
This is been for years being dismissed to psych, “psychosomatic” symptoms disregarded. I am HALLMARK Cushings, and look ridiculous and have for many years. I have a neurosurgeon in NYC trying to get my insurance to cover his hospital - Dr Langer at Lenox Hill in Manhattan. He says upcoming MRI will likely show nothing (I have a 1T/2T full brain from March 2021 shows pit, unremarkable) and will need IPSS. My Endo though is useless and dismissed me when I met her (she’s not the first or second or third this is 16 years in…) told me it’s NOT Cushings. I went home and book w Dr F. I see him in like two weeks!!!!!! So anything she hasn’t done, he will do. I thought it would be hard to catch highs - NOT! Most are high, a few normal. Several, and high blood. But no high urine Bc not ordered properly!
My @ home urine cortisol tests from Vessel Health are ALL HIGH at about 320ng/dl but they “don’t count”
If this woman does not begin to show some action I am filing a complaint and also getting a lawyer. I am also a single Mother of a beautiful and healthy 5 year old son. I am enraged to say the least.
Idk if my current Endo is so arrogant she can’t admit she was wrong, or what?! Bc my levels MORE THAN diagnose me!! They’re 8x normal, lowest in AM albeit still high in AM, zero circadian rhythm. You don’t have to be a physician to tell as it’s pretty obvious. I saw her on Tuesday and she again told me it’s not Cushings. I was shocked, Bc it surely is (labs are 8x normal) so I emailed her afterwards. She NEVER REVIEWED MY RESULTS. She only had “two that were listed in Epic” this woman is LITERALLY useless and idk how she graduated HIGH SCHOOL much less medical school.
And get this- she is an Endocrinologist PITUITARY/Cushings Disease Specialist!!!!!
Oh let’s not forget to mention the obvious other labs, GROSSLY deficient growth hormone and prolactin. I make nearly zero. I could not breastfeed Bc no milk. Zero. My inflammatory markers like CRP, lactate are high, and TPOantibodies are 1859 - so she DX Hashimotos. Which is correct, and a CONSEQUENCE of untreated CUSHINGS.
She RX me levothyroxitine, which if I would consume would RAISE MY CORTISOL and potentially kill me (already have heart palps and extremely high BP for YEARS)
This experience has been terrifying. Not “dissatisfying” but SCARY AS FUCK.
I'm so sorry you've been through all of this. Trust me, I completely feel you. It's crazy how many hoops I had to jump through to get to where I am today.
@@Chronicallyyours_ Noura!! I’ve had major progress since I commented. I went to Dr F at UCLA, but he wasn’t aggressive enough for me. So I found another new Endo who DID refer me to Neurosurgery and NeuroEndo - my pituitary MRI from 6/30 was read as normal! But it’s not. In fact it looks like multiple lesions!! I also have atrophy of my brain 🧠 and SEVERAL white matter lesions.
I was supposed to meet NeuroEndo on 9/28 but it’s been moved up to 8/10 per the Neurosurgeons request. Which is scaring me, but I am anxious as hell for treatment.
Finally there is an end in sight.
Last month I did file a formal complaint on my former “Cushings Specialist” Endo who refused me access to care.
I’m just appalled. Medical gaslighting happens to probably most all women at some point in their lives. But it does seem the CD population are ALWAYS told their ailments are “psychosomatic” or due to “stress”
Just enrages me.
How is your recovery going? You’ve had complete remission/cure right?
Do you feel significantly different since being sick?
You look beautiful 💜 thank you for sharing your story. You sharing is what led me to demand my own proper evaluation. 😘🤗🙌🏻
@@Nat524Ricci Wow oh my goodness!! Sometimes its hard for us to evaluate MRIs, is there another doctor you trust to look it over?
@@Chronicallyyours_ no surgeons aren’t the problem, they tell me they need the neuroEndos “okay” before they can operate. It’s my inept NeuroEndo. I fired her. Waiting on Dr F now. Such a nightmare!!!!
@@Nat524Ricci doctor f is the best, if theres something there hell see it