Did u have those tell tale signs called striae? And can u describe a bit about that through the nasal surgery?
@thorvidarr8 күн бұрын
Did any male here ever have their face look the same again after it was all over? I'm dealing with the symptoms at the moment... I'm not sure if it's Cushing's and I have an appointment soon. But I am terrified that I will have a bloated round face forever unless I intervene with cosmetic surgery.
@jonidriscoll20113 күн бұрын
God bless you and thank you, Alli for having the courage to share your story! I also have Cushing's Syndrome (bilateral adrenal adenomas). It is a lonely and frustrating disease!I 100% have all the same symptoms, and have now recently progressed to type 2 diabetes (yet another delightful symptom of this disease). I am now at the stage of begging surgeons to remove my adrenal gland. It's been a progressive disease with symptoms starting about 20 years ago. It's a very frustrating journey for myself and many others, because it is so rare, doctors want to treat only symptoms or atribute symptoms to other causes. Pray for me as I am actually going to meet with a surgeon for the 2nd time to plead with him on June 12, 2024. I want my life back...😢
@navyretired23016 күн бұрын
Thank you for opening up about such a wicked health issue. My spouse was recently diagnosed with cushings. She begins drug trestment in about two weeks. This is medication induced cushing from 30 years of dozens of depression meds. Her hair is 50% gone. Severe glaucoma both eyes. Round face. Bruises. Joint paint constipation. Foggy brain. my advice. Push your doctors into speading time to find the root causes of any health issues. God bless
@navyretired23016 күн бұрын
Thank you for sharing. My spouse was recently diagnosed with cushing. We are waiting on the prescription. She was diagnosed with with bipolar drug resistant depression. A dozen meds. Hospitality three times for a month each in five years. Her cortisol is through the roof24/7. This has been going on for 30 years. Dozens of doctors and psychology doctor's. Glaucoma both eyes. Can't drive.
@devasenahariharan57219 күн бұрын
Is a big tummy caused due to this
@ethar305927 күн бұрын
What a smart smart girl
@Drobalar-DrsebiАй бұрын
*MR OBALAR* ON KZread CURE ME TOTALLY ❤
@Drobalar-DrsebiАй бұрын
*MR OBALAR* ON KZread CURE ME TOTALLY ❤
@shawnabrown8531Ай бұрын
I’m going through the same thing!!! I have an mri on April 21. I need to find out!! I’m living with awful symptoms as well
@user-jy6vp1zm9mАй бұрын
After Cushing my face has never looked the same again. Still makes me so sad. I feel like I don’t even look like me anymore. 80% of my hair fell out which was my pride and joy. I hate having a round face. I hate seeing pictures of myself.
@user-jy6vp1zm9mАй бұрын
I had Cushing disease. It was awful 😣
@shawnabrown85312 ай бұрын
Oh my gosh!! I just found out about 1 week or so I have cushings myself. I get an mri on the 18th of April to see how big or how many tumors on my pituitary. I’m so glad I found your videos. Thanks
@MarinaMincheva9Ай бұрын
hey how did the MRI go 🩻
@jezswly9192 ай бұрын
i am three weeks post-op, still really tired but so happy to have it over with. your videos have been so helpful for me, they've made me feel less alone and have also been very useful for showing to my friends and family so they can understand more about cushing's. you're amazing :)
@Guyhakverdi2 ай бұрын
Do you remember the level of 24 hr urine results?
@lilsheba12 ай бұрын
I'm just the opposite, I know I have an adrenal tumor but don't know if I have Cushings or not. I'm doing a timed blood test on Friday. And definitely having surgery to remove the tumor.
@dayana4443332 ай бұрын
When did you loose waight?
@angelaghafoori73742 ай бұрын
Thank you for your videos. They have helped with my experience since I had no idea I had it and just an unexpected surgery two weeks ago to remove a tumor. I can’t say I had and of the symptoms you mentioned after surgery. My dr’s biggest concern was that my kidneys were functioning normally after the tumor was removed, my sugar levels, and blood pressure.
@katef69893 ай бұрын
I’m 45, I was diagnosed 2.5 years ago! And my endocrinologist told me to live with it, because the 3rd MRI didn’t find a tumour, even though the first 2 found 2 very small ones. I think I have been suffering from this since I was maybe mid 20’s, if not earlier. I had spontaneous remission for 18 months when I was 37. No clue why. Lost 22kg and was the healthiest and fittest I have ever been in my life. Then it started all over again. By the time I was 43 I told my endocrinologist that I had Cushing’s. Did all the tests and sure enough I did. But he just wouldn’t treat me. I’ve had enough of looking and feeling terrible. So next week, I see a new endocrinologist and hopefully I will get fixed. Thank you for your video. It was very helpful.
@flobeauredonarts54483 ай бұрын
I have a big question: how long did it take for you to recover your norrnal face? Not being able to recognize myself since way too long, having any administration looking at my passport and telling me it's not me, is (you know it) very hard...thank you
@mamallamanatural3 ай бұрын
The PTSD is real. It took so long to get the diagnosis and finally to feel validated when I did. I fought for my life for 4 years. 10 years in remission. There is hope. Great job and kind of you to share. I looked for anyone like you 10 years ago.
@wendyfields19873 ай бұрын
Lol, i called that cortizol withdrawl 😂 it was the absolute worst part of recovery !! I was almost begging for the tumors back for a hot min just to get relief from the pain and discomfort ! Its REAL 😢😢
@arterapeuticarosesabag40593 ай бұрын
Thank you!!!! How are you today? I feel hopeful with your contribution.
@shiitake15213 ай бұрын
I had it for ten years before I was diagnosed. Took me at least a year to recover and I needed to go to physical therapy because of muscle atrophy. I was 48 when diagnosed. You are young and it was caught early (compared to me), I’m only saying this for the older people watching this. Recovery is longer for us. The drug addict metaphor is spot on. I would vomit for no reason for a long time, and then got ulcers from the stress and shock of withdrawal. It does suck. It wasn’t over after the surgery.
@shiitake15213 ай бұрын
I had it for about 10 years before I was diagnosed. The doctors did not believe there was anything wrong with me. It was the most difficult decade of my life. I still have PTSD. I can not handle stress at all anymore. I’m tapped out. Everyone thinks I am aloof, but it’s only because I still struggle with depression.
@Drobalar-DrsebiАй бұрын
*MR OBALAR* ON KZread CURE ME TOTALLY ❤
@olekmadrzyk67843 ай бұрын
I am close to 1 year after surgery and I am still afraid that it is going to come back.
@olekmadrzyk67843 ай бұрын
I had same surgery on April '24. Non of the side effects that you have described happened to me. After surgery I woke up, nurse checked whether I have control of my limbs and I spent few hours on post op block. I was not given any drink, only some ice cubes suck on. After I left post op block I spent another 4 days in hospital and was discharged. On last day they removed a big bloody tampon from my nose. My cortisol level were also at 0, but my body did not go through shock as yours did. I guess this differs from case to case.
@kathywrightjohnson68043 ай бұрын
If this is what i have, how would i know what normal feels like? I am 56 years old and remember the hump being there in my late teens. I gained from 150 to 220 in a year. I am now 286 pounds. I became t 2 diabetic in 2005. So i have suffered from effects since i was quite young. Lately i have deteriorated to the point of needing a power wheelchair and feel like i dont have much time left if we cant figure this out and get me treated. I would love to feel better and get rid of this weight. It would be wonderful if i could stop having to take insulin if it fixes the diabetes as well.
@kathywrightjohnson68043 ай бұрын
Everything about Cushing's screams I have it! Yesterday a friend sent me an article about it and I remember at 22 years old, I had the buffalo hump. I lost my first baby to an ectopic pregnancy, my periods were very irregular, I have asthma, high blood pressure, diabetes, morbid obesity with thin arms and legs, stretch marks, acne, osteocytes, and I could go on and on. I weigh 286 and am fatigued all the time, depression, anxiety gosh I really can go on. This terrifies me. I'm 56 years old and this could have been fixed decades ago. I can be carrying around a tumor in my brain and I want it gone. Where do you live and what hospitals did you go to for treatment? I live in Western NY south of Rochester. I feel like I have found the cause of my weight issues and all the other problems and I feel almost validated that there really has been something wrong that can be treated. This gives me hope for a future with better health. This set of videos may just have saved my life. Thank you.😊😊😊
@HLTrds3 ай бұрын
This sucks can because you were not very well taken care of and I hate that these doctors and nurses didn’t educate you on what the symptoms are, and what you would have to deal with, that’s neglect on their part I think
@HLTrds3 ай бұрын
I think, listening to this, just saved my daughter, she’s going through the same thing, and we could not figure it out
@rachelharris7253 ай бұрын
I was diagnosed in 2008. It hit in the late 90s as a college athlete. Went up to 380 pounds in 18 months. Spent the next 10 years getting insulted and gaslit by doctors and endocrinologists. I finally accepted that maybe i do have it despite it's rareness. I still got laughed at. Ordered my own labs and paid out of pocket they came back just over the range. Then i got the guts to fake a bad headache caused by a fall to get the ER to do a MRI. Even though it was just a brain mri and not pituitary specific, that tumor was so big it was obvious. After talking to others who had it online on the Cushing's support site, i finally went to LA to see Dr. Freidman. The moment I sat infront of him he knew i had it. The trunk obesity, the stretch marks, the supra clavicle fat pads. He ordered midnight blood draws. The range is 0-1 for normal, 5 suggestive of the disease, and 7.5 was diagnostic. My first test was 18. My second was 22. After that he cleared me for surgery with Dr. McCutcheon at MD Anderson. The transphenoidal surgery was unsuccessful and the tumor was too invasive. Instead i had my adrenals removed. All the weight fell off and some of my old doctors got an education. 9 years go by and then i am diagnosed with stage 4 nasopharyngeal cancer that had spread all over my neck and skull. I barely survived treatment and was on so many steroids i looked like i had Cushing's again. My first PET scan after treatment then showed i had Uterine cancer as well. Luckily i only needed a hysterectomy for that one and not chemo and radiation again. Adrenal insufficiency is not as easy as take a hydrocortisone and fludrocortisone and you're fine. Illness creeps up much easier with little immune system.
@kaymack53043 ай бұрын
When you said you pushed for quick testing and appointments, what did that look like? We’re you just calling often to see about cancellations? Thank you.
@BriarthornAJ3 ай бұрын
I just got the results of my dexamethasone suppression test today. I failed. My symptoms started 20 years ago....I am so mad. I have all the symptoms except the stretch marks. I was blown off by so many doctors. I was lactating when my kid was 3. The dexamethasone tablet cost $0.04. Totally ridiculous that a simple lab test could have found this 20 years ago. The endocrinologist I saw last week ordered the dex test. The only doctor that took the time to listen and piece this together.
@flobeauredonarts54483 ай бұрын
I am sorry to hear that but I cannot help but telling you this is complete BS! this is happening in the US but not in other countries. I NEVER had to do dex suppression test, never it was even mentioned to me by my doctors. I never even had to do the saliva test, although I was firmly diagnosed by my endo. and got surgery on Jan 9. Everything in the industrialized countries are about money, bigpharma, etc. That's why I left and they saved my life here (costa rica) by not having me wait too long while the disease was progressing, putting me in the hands of doctors who CARED and listened to me, and getting me a date for surgery very fast.
@TaiLynK3 ай бұрын
With tears and my eyes and hope in my heart, thank you. You’re still the only person talking about this at length, publicly. I appreciate you ❤
@LovingLavene3 ай бұрын
Going through all of it right now
@aaronsadventures08024 ай бұрын
I’ve watched the whole series and I appreciate you bringing awareness and sharing your story. I am currently being tested for cushings and awaiting my second round of tests. Whatever my diagnosis ends up being, learning about your journey validated my feelings and how I feel.
@heatherb98533 ай бұрын
Right there with you waiting for second round of tests, and agree. Finally being this close to some real answers to why you feel like this and that you aren’t in fact crazy or being a baby is super validating 😢 prayers to your healing and journey
@vanessatucker56024 ай бұрын
Thank you!!! I have a medical history and was diagnosed at the age of 4 which led to 4 brain aneurysms at the age of 13 which they put me on Prednisone for a year and that did so much to my body I begged them to take me off even though it saved my life or gave me most of the symptoms Cushing's give you it wasn't because of cushings.Years later I ended up having stress/anxiety induced seizures that ended up being controlled by meds. Now I'm 35 and started experiencing Cushing's symptoms that I've never heard of before a friend from highschool reached out to me and after 17 years they finally diagnosed her with Cushing's. She was curious if that's what I had in highschool because of my rapid weight gain and similar symptoms. But It wasn't, it was from steroids. So she opened a long conversation and I began to tell her that coincidentally I'm having those symptoms again. I gained 140 lbs in the past 2 years new stretch marks loss of hair( which until I watched your video I didn't know that was a symptom) but I'm currently going through all of the testing to confirm Cushing's. My RA Dr. Called it immediately without me even bringing it up and referred me to an endocrinologist and many other specialists. My Endo Dr. Agreed on his pre diagnosis so I just want to thank you for posting these videos to educate everyone because I am so scared of what's to come. Surgery in my pituitary gland is not an option for me because I have Vasculitis and I'm hoping they can cure me some other way I'm hoping the removal of the kidney adrenal glands is where my body is producing the cortisol but I'm so scared of what that entails; as well as the recovery. I have shared all of your videos with my family so they can be educated from someone other than their own research.... I'm so happy for you and you are so strong babygirl and I wish u the best to come 💜💪 thank you for making me feel better about what is to come!!!
@randomaccessmemories89124 ай бұрын
Thank you for sharing your experience, you’re very brave. Did you have a hump on your back?
@Holly_hox4 ай бұрын
Hi from Sweden 👋🏼🇸🇪 Thank you for sharing! Appreciate this information tho I have many of theese symptoms 🙏🏼
@michellemears2724 ай бұрын
I watched the whole series and you got through the recordings with such grace not to mention beating this terrible disease. You are a strong woman and so inspiring. I am 38 and in the final stages of diagnosis for this, they’ve already found my tumor and final Cortisol test is tomorrow. I just want to feel like myself again but realize that won’t be immediate and watching this gives me hope it will be worth it. Thank you for being brave and putting yourself out there. The videos were perfect if you ask me! ❤
@Christinesobsevations5 ай бұрын
After watching this and a few other videos I made an appt with my PCP today .I need to take a deeper look here because I suffer all of this .
@KeshaIsSaved5 ай бұрын
@18:50 🥹♥️♥️♥️♥️♥️ you go girl !
@KeshaIsSaved5 ай бұрын
Thank you so much love you uplifted my whole mood for tonight I really hope and pray I get diagnosed with this because I know I have it I just really want the surgery to get this tumor out of my body that’s causing all of this ❤.
@sherrisharp98075 ай бұрын
starting my journey so, I wonder if I have it.... so so so many of the symptoms
@ryanyork8375 ай бұрын
It seems to run in My family. It started with my great uncle ending up in western state mental hospital in the sixties. The physical symptoms suck but the worst is the mental issues. I've had serious issues with hypoglycemia attacks I guess that's not as common. The vision problems is because the anxiety your body stuck in a fighter flight. And that can cause You to get tunnel vision. Light sensitivity to the eyes and lack of concentration has been the most frustrating part of it on top of the blood sugar drops. It came very difficult for me to discover what was going on. Because I wasn't showing the exact classic cushions symptoms. Depression probably wasn't issue but it seemed to come out in anger in our family. My great Uncle, my cousin and me so far. Had extremely anger issues with this disease. And I don't know if that's because of the blood sugar swings or what was going on. But it's not good. I still can't touch caffeine or any stimulance. It gives me extreme panic attacks and Even crashes my blood sugars into the bert, causing me to have the worst panic attacks ever. And the other part about this disease that makes it hard for you to sit still in a place for a long. of time. You get so anxious, you gotta get up and walk around. Otherwise you feel like you're closed in and going to go crazy. Cushions disease is a nightmare.. They still haven't figured out if mine is primary or secondary cause. Been dealing with it for 12 years
@emicastorena50515 ай бұрын
Thank you for sharing your story has helped me understand a lot more of what is going on with myself now already had my 24 hours urine and saliva test all are positive now I have to do the next step they say is to figure out if its my pituitary or adrenal gland but you have helped me understand many things happening to myself that I did not understand and was not informed of im sure because it's a lot for both a doctor and a patient but thank you 🙏
@emicastorena50515 ай бұрын
Thank you so much for speaking on this and doing this video
@icemanchambers12075 ай бұрын
Cushing is so destructive. It slowly increases cortisol, leading to collagen and elastin loss in the skin. It destroys that Youthful Look. Thank to God it has a Cure..
@karaclaire4125 ай бұрын
this series has given me a lot of hope- I haven't felt or been myself for the last few years now. I think it started back in 2019 where I was convinced I had an issue with my thyroid but my bloodwork came back as normal so I pretty much shrugged it off. I went through some events that I chalked my anxiety/panic attacks/depression to however my symptoms have gotten worse the last few months. I went to a new PCP in May and all tests came back normal. She basically suggested medication for depression (which I said I wanted to avoid if possible so haven't taken yet) and suggested I see a therapist. I'm going to reach out to an endocrinologist that accepts my insurance. I have the same symptoms you've described- most notably my hair and skin. It's sort of insane to me how obviously drastic the changes are however my doctor doesn't seem to see them. Like you said though we have to be our own advocates because we know our bodies and what's normal better than anyone <3 I'll feel a huge relief just knowing what's causing all of these changes and how to manage them so I can feel like I can move forward and not just live day to day on auto pilot (I’m also very tried of feeling like a hypochondriac 🙃)
Пікірлер
Did u have those tell tale signs called striae? And can u describe a bit about that through the nasal surgery?
Did any male here ever have their face look the same again after it was all over? I'm dealing with the symptoms at the moment... I'm not sure if it's Cushing's and I have an appointment soon. But I am terrified that I will have a bloated round face forever unless I intervene with cosmetic surgery.
God bless you and thank you, Alli for having the courage to share your story! I also have Cushing's Syndrome (bilateral adrenal adenomas). It is a lonely and frustrating disease!I 100% have all the same symptoms, and have now recently progressed to type 2 diabetes (yet another delightful symptom of this disease). I am now at the stage of begging surgeons to remove my adrenal gland. It's been a progressive disease with symptoms starting about 20 years ago. It's a very frustrating journey for myself and many others, because it is so rare, doctors want to treat only symptoms or atribute symptoms to other causes. Pray for me as I am actually going to meet with a surgeon for the 2nd time to plead with him on June 12, 2024. I want my life back...😢
Thank you for opening up about such a wicked health issue. My spouse was recently diagnosed with cushings. She begins drug trestment in about two weeks. This is medication induced cushing from 30 years of dozens of depression meds. Her hair is 50% gone. Severe glaucoma both eyes. Round face. Bruises. Joint paint constipation. Foggy brain. my advice. Push your doctors into speading time to find the root causes of any health issues. God bless
Thank you for sharing. My spouse was recently diagnosed with cushing. We are waiting on the prescription. She was diagnosed with with bipolar drug resistant depression. A dozen meds. Hospitality three times for a month each in five years. Her cortisol is through the roof24/7. This has been going on for 30 years. Dozens of doctors and psychology doctor's. Glaucoma both eyes. Can't drive.
Is a big tummy caused due to this
What a smart smart girl
*MR OBALAR* ON KZread CURE ME TOTALLY ❤
*MR OBALAR* ON KZread CURE ME TOTALLY ❤
I’m going through the same thing!!! I have an mri on April 21. I need to find out!! I’m living with awful symptoms as well
After Cushing my face has never looked the same again. Still makes me so sad. I feel like I don’t even look like me anymore. 80% of my hair fell out which was my pride and joy. I hate having a round face. I hate seeing pictures of myself.
I had Cushing disease. It was awful 😣
Oh my gosh!! I just found out about 1 week or so I have cushings myself. I get an mri on the 18th of April to see how big or how many tumors on my pituitary. I’m so glad I found your videos. Thanks
hey how did the MRI go 🩻
i am three weeks post-op, still really tired but so happy to have it over with. your videos have been so helpful for me, they've made me feel less alone and have also been very useful for showing to my friends and family so they can understand more about cushing's. you're amazing :)
Do you remember the level of 24 hr urine results?
I'm just the opposite, I know I have an adrenal tumor but don't know if I have Cushings or not. I'm doing a timed blood test on Friday. And definitely having surgery to remove the tumor.
When did you loose waight?
Thank you for your videos. They have helped with my experience since I had no idea I had it and just an unexpected surgery two weeks ago to remove a tumor. I can’t say I had and of the symptoms you mentioned after surgery. My dr’s biggest concern was that my kidneys were functioning normally after the tumor was removed, my sugar levels, and blood pressure.
I’m 45, I was diagnosed 2.5 years ago! And my endocrinologist told me to live with it, because the 3rd MRI didn’t find a tumour, even though the first 2 found 2 very small ones. I think I have been suffering from this since I was maybe mid 20’s, if not earlier. I had spontaneous remission for 18 months when I was 37. No clue why. Lost 22kg and was the healthiest and fittest I have ever been in my life. Then it started all over again. By the time I was 43 I told my endocrinologist that I had Cushing’s. Did all the tests and sure enough I did. But he just wouldn’t treat me. I’ve had enough of looking and feeling terrible. So next week, I see a new endocrinologist and hopefully I will get fixed. Thank you for your video. It was very helpful.
I have a big question: how long did it take for you to recover your norrnal face? Not being able to recognize myself since way too long, having any administration looking at my passport and telling me it's not me, is (you know it) very hard...thank you
The PTSD is real. It took so long to get the diagnosis and finally to feel validated when I did. I fought for my life for 4 years. 10 years in remission. There is hope. Great job and kind of you to share. I looked for anyone like you 10 years ago.
Lol, i called that cortizol withdrawl 😂 it was the absolute worst part of recovery !! I was almost begging for the tumors back for a hot min just to get relief from the pain and discomfort ! Its REAL 😢😢
Thank you!!!! How are you today? I feel hopeful with your contribution.
I had it for ten years before I was diagnosed. Took me at least a year to recover and I needed to go to physical therapy because of muscle atrophy. I was 48 when diagnosed. You are young and it was caught early (compared to me), I’m only saying this for the older people watching this. Recovery is longer for us. The drug addict metaphor is spot on. I would vomit for no reason for a long time, and then got ulcers from the stress and shock of withdrawal. It does suck. It wasn’t over after the surgery.
I had it for about 10 years before I was diagnosed. The doctors did not believe there was anything wrong with me. It was the most difficult decade of my life. I still have PTSD. I can not handle stress at all anymore. I’m tapped out. Everyone thinks I am aloof, but it’s only because I still struggle with depression.
*MR OBALAR* ON KZread CURE ME TOTALLY ❤
I am close to 1 year after surgery and I am still afraid that it is going to come back.
I had same surgery on April '24. Non of the side effects that you have described happened to me. After surgery I woke up, nurse checked whether I have control of my limbs and I spent few hours on post op block. I was not given any drink, only some ice cubes suck on. After I left post op block I spent another 4 days in hospital and was discharged. On last day they removed a big bloody tampon from my nose. My cortisol level were also at 0, but my body did not go through shock as yours did. I guess this differs from case to case.
If this is what i have, how would i know what normal feels like? I am 56 years old and remember the hump being there in my late teens. I gained from 150 to 220 in a year. I am now 286 pounds. I became t 2 diabetic in 2005. So i have suffered from effects since i was quite young. Lately i have deteriorated to the point of needing a power wheelchair and feel like i dont have much time left if we cant figure this out and get me treated. I would love to feel better and get rid of this weight. It would be wonderful if i could stop having to take insulin if it fixes the diabetes as well.
Everything about Cushing's screams I have it! Yesterday a friend sent me an article about it and I remember at 22 years old, I had the buffalo hump. I lost my first baby to an ectopic pregnancy, my periods were very irregular, I have asthma, high blood pressure, diabetes, morbid obesity with thin arms and legs, stretch marks, acne, osteocytes, and I could go on and on. I weigh 286 and am fatigued all the time, depression, anxiety gosh I really can go on. This terrifies me. I'm 56 years old and this could have been fixed decades ago. I can be carrying around a tumor in my brain and I want it gone. Where do you live and what hospitals did you go to for treatment? I live in Western NY south of Rochester. I feel like I have found the cause of my weight issues and all the other problems and I feel almost validated that there really has been something wrong that can be treated. This gives me hope for a future with better health. This set of videos may just have saved my life. Thank you.😊😊😊
This sucks can because you were not very well taken care of and I hate that these doctors and nurses didn’t educate you on what the symptoms are, and what you would have to deal with, that’s neglect on their part I think
I think, listening to this, just saved my daughter, she’s going through the same thing, and we could not figure it out
I was diagnosed in 2008. It hit in the late 90s as a college athlete. Went up to 380 pounds in 18 months. Spent the next 10 years getting insulted and gaslit by doctors and endocrinologists. I finally accepted that maybe i do have it despite it's rareness. I still got laughed at. Ordered my own labs and paid out of pocket they came back just over the range. Then i got the guts to fake a bad headache caused by a fall to get the ER to do a MRI. Even though it was just a brain mri and not pituitary specific, that tumor was so big it was obvious. After talking to others who had it online on the Cushing's support site, i finally went to LA to see Dr. Freidman. The moment I sat infront of him he knew i had it. The trunk obesity, the stretch marks, the supra clavicle fat pads. He ordered midnight blood draws. The range is 0-1 for normal, 5 suggestive of the disease, and 7.5 was diagnostic. My first test was 18. My second was 22. After that he cleared me for surgery with Dr. McCutcheon at MD Anderson. The transphenoidal surgery was unsuccessful and the tumor was too invasive. Instead i had my adrenals removed. All the weight fell off and some of my old doctors got an education. 9 years go by and then i am diagnosed with stage 4 nasopharyngeal cancer that had spread all over my neck and skull. I barely survived treatment and was on so many steroids i looked like i had Cushing's again. My first PET scan after treatment then showed i had Uterine cancer as well. Luckily i only needed a hysterectomy for that one and not chemo and radiation again. Adrenal insufficiency is not as easy as take a hydrocortisone and fludrocortisone and you're fine. Illness creeps up much easier with little immune system.
When you said you pushed for quick testing and appointments, what did that look like? We’re you just calling often to see about cancellations? Thank you.
I just got the results of my dexamethasone suppression test today. I failed. My symptoms started 20 years ago....I am so mad. I have all the symptoms except the stretch marks. I was blown off by so many doctors. I was lactating when my kid was 3. The dexamethasone tablet cost $0.04. Totally ridiculous that a simple lab test could have found this 20 years ago. The endocrinologist I saw last week ordered the dex test. The only doctor that took the time to listen and piece this together.
I am sorry to hear that but I cannot help but telling you this is complete BS! this is happening in the US but not in other countries. I NEVER had to do dex suppression test, never it was even mentioned to me by my doctors. I never even had to do the saliva test, although I was firmly diagnosed by my endo. and got surgery on Jan 9. Everything in the industrialized countries are about money, bigpharma, etc. That's why I left and they saved my life here (costa rica) by not having me wait too long while the disease was progressing, putting me in the hands of doctors who CARED and listened to me, and getting me a date for surgery very fast.
With tears and my eyes and hope in my heart, thank you. You’re still the only person talking about this at length, publicly. I appreciate you ❤
Going through all of it right now
I’ve watched the whole series and I appreciate you bringing awareness and sharing your story. I am currently being tested for cushings and awaiting my second round of tests. Whatever my diagnosis ends up being, learning about your journey validated my feelings and how I feel.
Right there with you waiting for second round of tests, and agree. Finally being this close to some real answers to why you feel like this and that you aren’t in fact crazy or being a baby is super validating 😢 prayers to your healing and journey
Thank you!!! I have a medical history and was diagnosed at the age of 4 which led to 4 brain aneurysms at the age of 13 which they put me on Prednisone for a year and that did so much to my body I begged them to take me off even though it saved my life or gave me most of the symptoms Cushing's give you it wasn't because of cushings.Years later I ended up having stress/anxiety induced seizures that ended up being controlled by meds. Now I'm 35 and started experiencing Cushing's symptoms that I've never heard of before a friend from highschool reached out to me and after 17 years they finally diagnosed her with Cushing's. She was curious if that's what I had in highschool because of my rapid weight gain and similar symptoms. But It wasn't, it was from steroids. So she opened a long conversation and I began to tell her that coincidentally I'm having those symptoms again. I gained 140 lbs in the past 2 years new stretch marks loss of hair( which until I watched your video I didn't know that was a symptom) but I'm currently going through all of the testing to confirm Cushing's. My RA Dr. Called it immediately without me even bringing it up and referred me to an endocrinologist and many other specialists. My Endo Dr. Agreed on his pre diagnosis so I just want to thank you for posting these videos to educate everyone because I am so scared of what's to come. Surgery in my pituitary gland is not an option for me because I have Vasculitis and I'm hoping they can cure me some other way I'm hoping the removal of the kidney adrenal glands is where my body is producing the cortisol but I'm so scared of what that entails; as well as the recovery. I have shared all of your videos with my family so they can be educated from someone other than their own research.... I'm so happy for you and you are so strong babygirl and I wish u the best to come 💜💪 thank you for making me feel better about what is to come!!!
Thank you for sharing your experience, you’re very brave. Did you have a hump on your back?
Hi from Sweden 👋🏼🇸🇪 Thank you for sharing! Appreciate this information tho I have many of theese symptoms 🙏🏼
I watched the whole series and you got through the recordings with such grace not to mention beating this terrible disease. You are a strong woman and so inspiring. I am 38 and in the final stages of diagnosis for this, they’ve already found my tumor and final Cortisol test is tomorrow. I just want to feel like myself again but realize that won’t be immediate and watching this gives me hope it will be worth it. Thank you for being brave and putting yourself out there. The videos were perfect if you ask me! ❤
After watching this and a few other videos I made an appt with my PCP today .I need to take a deeper look here because I suffer all of this .
@18:50 🥹♥️♥️♥️♥️♥️ you go girl !
Thank you so much love you uplifted my whole mood for tonight I really hope and pray I get diagnosed with this because I know I have it I just really want the surgery to get this tumor out of my body that’s causing all of this ❤.
starting my journey so, I wonder if I have it.... so so so many of the symptoms
It seems to run in My family. It started with my great uncle ending up in western state mental hospital in the sixties. The physical symptoms suck but the worst is the mental issues. I've had serious issues with hypoglycemia attacks I guess that's not as common. The vision problems is because the anxiety your body stuck in a fighter flight. And that can cause You to get tunnel vision. Light sensitivity to the eyes and lack of concentration has been the most frustrating part of it on top of the blood sugar drops. It came very difficult for me to discover what was going on. Because I wasn't showing the exact classic cushions symptoms. Depression probably wasn't issue but it seemed to come out in anger in our family. My great Uncle, my cousin and me so far. Had extremely anger issues with this disease. And I don't know if that's because of the blood sugar swings or what was going on. But it's not good. I still can't touch caffeine or any stimulance. It gives me extreme panic attacks and Even crashes my blood sugars into the bert, causing me to have the worst panic attacks ever. And the other part about this disease that makes it hard for you to sit still in a place for a long. of time. You get so anxious, you gotta get up and walk around. Otherwise you feel like you're closed in and going to go crazy. Cushions disease is a nightmare.. They still haven't figured out if mine is primary or secondary cause. Been dealing with it for 12 years
Thank you for sharing your story has helped me understand a lot more of what is going on with myself now already had my 24 hours urine and saliva test all are positive now I have to do the next step they say is to figure out if its my pituitary or adrenal gland but you have helped me understand many things happening to myself that I did not understand and was not informed of im sure because it's a lot for both a doctor and a patient but thank you 🙏
Thank you so much for speaking on this and doing this video
Cushing is so destructive. It slowly increases cortisol, leading to collagen and elastin loss in the skin. It destroys that Youthful Look. Thank to God it has a Cure..
this series has given me a lot of hope- I haven't felt or been myself for the last few years now. I think it started back in 2019 where I was convinced I had an issue with my thyroid but my bloodwork came back as normal so I pretty much shrugged it off. I went through some events that I chalked my anxiety/panic attacks/depression to however my symptoms have gotten worse the last few months. I went to a new PCP in May and all tests came back normal. She basically suggested medication for depression (which I said I wanted to avoid if possible so haven't taken yet) and suggested I see a therapist. I'm going to reach out to an endocrinologist that accepts my insurance. I have the same symptoms you've described- most notably my hair and skin. It's sort of insane to me how obviously drastic the changes are however my doctor doesn't seem to see them. Like you said though we have to be our own advocates because we know our bodies and what's normal better than anyone <3 I'll feel a huge relief just knowing what's causing all of these changes and how to manage them so I can feel like I can move forward and not just live day to day on auto pilot (I’m also very tried of feeling like a hypochondriac 🙃)