Diagnosed with a Rare Disease: My Cushing's Story Part 4 - Recovery & Life Today 

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 ❤

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.

Thank you Alli! I'm 44 and waiting on my results. Even If I don't have Cushing's it feels validating to know that there are others experiencing the same debilitating symptoms as myself. Just also want to say that I already have childhood PTSD from not being believed and then all the doctors gaslighting me and sending me on my way without any answers only to leave me feeling crazier and possibly a hypochondriac. I'm sick of it. I hope to get a diagnosis and treatment xo

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’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 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! ❤

I was just diagnosed and I’m just crushed, and feeling really down and sad about my journey ahead towards recovery. I’m so far away from this being over and I feel so ugly and sick and not myself. 😭💔

Your story was so inspiring.. my doctor suspects i have Cushing I’m just too scared to go through with all the testing bc I’m so scared of surgery. WISH ME LUCK

Thank you for all of your videos. I am 54 and just starting to get testing done after I started putting the pieces together. I am been to numerous doctors over the years for all of my symptoms and I felt like they were just putting bandaids on my symptoms and prescribing more medication. I have always known that one thing was causing all of my symptoms but couldn’t figure it out until blood work started to look funny and cushings disease came up and now it makes total since. Like you said, I hope all my tests come back positive for cushings because I will FINALLY have an answer and people will know I’m not a hypochondriac!☺️take care!

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

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 :)

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!!!

Please post quick little updates every 3 months

Thank you for posting this. I've just turned 36 and waiting on the results of my blood test. Literally step one, but it is the only thing I can think of that explains everything I have increasingly suffered for over 30 years. I already have a very nasty case of endometriosis confirmed via both MRI scans and exploratory surgery, and I suspect I may have the exceedingly poor luck to have an inherited form of Cushings, since my grandmother died of a stroke in her mid fifties after eerily similar health issues as I now suffer nearly fifty years later. If my suspicion is correct, it may well be I have literally never been fully well for a single day in my life. I do not even know who I will be if I get a diagnosis and receive successful treatment. I am also certain I have some form of cPTSD, as the number of people in my life who have never seriously discriminated against me, subjected me to some form of verbal or emotional abuse no matter my size, looks or level of exhaustion on a given day or just straight up ignored my repeatedly saying that something is very wrong with me can be counted on a single hand. I can't count any of my family in that number. Baffled doctors who may not have even seen this condition in their entire lives is one thing. The miserably shoddy, shamey, actively hostile treatment by people I've been forced to be in contact with one way or the other over the years is an entirely different issue. I'm 19 stone but have lived on 1400-1500 cal a day for around 8 months, whist eating an excellent diet and doing a mix of strength and cardio three times a week for crying out loud, and have only lost a pound a month so far. Basic caloric maintenance intake for someone of my stats is around 3000 calories. Every damn ounce has been a battle against an uncooperative body. I have been expected to function on the same level as healthy people for decades despite having one serious condition already confirmed, and now this. I'm both knackered and burning from the inside out with frustration and resentment. I lost my job and romantic relationships are a no go. May update this comment in a week if anything of note comes back from the test. Take care all in the meantime.

Thank you! I have been experiencing various symptoms for the past 7 years (the last year it's progressed extremely fast) and got a refferal to examen Cushing's today. Never heard of it before today. I always felt something was wrong but the doctors would always refer me to a diet specialist because 'i just needed to lose weight'. Today was the first time i felt heard seen and understood and the first time i felt like everything falls into place. Test have to show i have it but i'm pretty sure it's Cushing's. I'm anxious and excited for the results when i'm starting testing in august and i hope i can be myself again and find my way back to a normal good and happy life! Sorry for the broken English, i'm not a native English speaker

thank you, your videos really helped me and a lot of people

I can't help but feel scared that I may have a pituitary gland tumor, and I'm trying not to freak before my MRI...Thank you for sharing your experience. I love that you recognize the blessing in being brought through this diagnosis, and now are in a position to help educate and encourage others... TESTIMONY AND ALL PRAISE TO GOD! Thank you, Alli. Sending a big hug.💖

Thank you for all you’ve done to document your Cushings experience. My Granddaughter, who is a few months younger than you, was recently diagnosed and will have surgery in January. God bless you.

Thank you so much for your strength and kindness in making these videos. My husband is getting progressively sick but the doctors run test and tell him that the tests are all normal and he’s just old. I did my own research looking up all his symptoms and Cushing syndrome fits all of them except that he’s not diabetic. His doctor told him that Cushings is out of the question because he is not diabetic. He had to argue with her to get her to order a test. We are waiting for the results. God bless you for posting these videos! I am so happy that you now have a normal happy life!❤️❤️❤️

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

I am so excited I found your channel and finally have an explanation for what could be wrong with me but man… recovery sounds tough. Well done for going through all of this!!! ❤

@That'sRightUpMyAlli Alli, I had written an unusually long comment on your very first video and I don't know what happened, but it got lost and I wasn't able to send and didn't feel like starting over that day. I wanted to say that even your first video was very well done and very educational and you are a pro now! Keep up the good work! I may have written something and forgotten so if this is a similar repeat, I apologize. The memory is shot these days and concentration is right there with it. For about a year now I have been having all these crazy symptoms and have had a hard time getting anyone to run blood work. I am unemployed with zero income, living off savings while waiting on a disability approval (not related to this, but now here it is). I have to go to the poor people doctor and they don't care about you, write inaccurate stuff in your chart and won't run blood work except once a year which I had already had (this is what the dr told me, but he lied). I have been trying to get my blood work done since May but (it's a LONG story), it wouldn't have mattered because the wrong blood work was ordered. I didn't know that then but after months of researching, I came up with Addison's and/or Hyperthyroidism. However, after breaking down and paying for blood work out of my pocket, the Cortisol AM test came back high (28.9) which indicates Cushing's however, I have LOST over 30 pounds without trying since February and my symptoms match up more with Addisons. I am still waiting on the ACTH, Plasma tests to confirm which it is or maybe it's neither. I just want to know so I can treat it. The nausea/vomiting, insomnia, fatigue, sweating, etc. is debilitating not to mention the memory and concentration issues. Add on a bunch of mental disorders and fibromyalgia, vestibular migraines/unilateral vestibular weakness, low back pain, and it is just a cornucopia of mind-boggling ailments. I have no family support and have blocked most of them out of my life. Wondering if now that's because of THIS. The thyroid test came back normal, now if that last time will come through, I will hopefully have the answer I have been looking for since last year and can hopefully get treatment so I can feel like a human again. I will update once I have an accurate diagnosis but would love to talk with you more.

Going through this with my daughter now. Your videos are so incredibly helpful. Thank you for sharing your experience.

I am so happy to hear that you are doing much better now🙏🏼 You are such a strong woman💪

Hi Alli! I just discovered your videos and I think God led me to your channel 🙏 I just went to a doctor yesterday after having a massive panic attack the previous night. I have so many of the cushings symptoms and I completely relate to how you felt you just knew. My doctor was also kind of skeptical but I’m getting the suppression test done in the morning. I just hope I get answers because I’m ready for this chapter to be over. I can’t wait to hear your testimony!!! 🙌🏼💛

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 🙏

Thanks for these awesome videos. Finally I found someone who understand the horrible times that have been thorough in last three years. I have a question regarding anxiety and stress. After one year from surgery, I still can not get back to the normal life. I am so afraid of getting back to job and always afraid to make contact with stranger people. Also i have weak memory and concentration. It was so strange for me that you get back to work after two months since surgery.

@18:50 🥹♥️♥️♥️♥️♥️ you go girl !

Curious how much $$$ does this process cost? Thank you and god bless.

Thank you!!!! How are you today? I feel hopeful with your contribution.

Thank you for sharing your experience, you’re very brave. Did you have a hump on your back?

I did the exact opposite as you... I had surgery on a Tuesday, left the hospital on Friday and tried to go back to school on Monday... That predictably didn't go so well 😅. But I was so stubborn and just wanted to graduate that I went back the following week anyway, and I somehow got through it. I write my last exam this Wednesday and I'll be done! I wouldn't particularly reccomend it, but it is possible to get right back into things. You just have to be a bit more patient with yourself and have lower expectations for a while. Supportive family helps too, my mother stayed around for about a month to help with all the little things that wouldn't normally take so much out of you like cooking and cleaning. I don't think I would've been able to go back to my day to day routine without her.

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.

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.

My mom is currently in the hospital after a tumour removal, there is a bit of residual tumour left around her carotid which they dont want to remove due to risk of stroke. The consultant told me today he believes that shes had cushings from having the tumour the last few years, her cortisol is high. It would explains so much about her the last few years and all the problems she has experianced. She will likely be in hospital a while longer as they have to redo the repair patch in her nose. Im really scared of the long term implications and whether she can live a normal life once she has recovered? My mom has not had symptoms as extreme as yours, she only really got the fatigue and hair loss in the last few months along with the thinning of the skin. I really hope its something that will go away in time like in your case. The consultants also believe its the cause of her diabetes and or why it went out of control. Thank you so much for your video it really helped ease my mind a little bit.

Dear Alli, your videos have been extremely helpful for me, thank you so much for sharing your story! I’m almost 7 months post-op but still struggling with fatigue, joint pain and depression. Now I know all of this is normal, however everything takes longer than it did for you (I’m 47 so it’s natural😉). I wish you all the best!😊 Lenka

My recovery was pretty easy. I took my hydrocortisone pills for about 2 months slowly weening myself off. I still have this huge bottle left using it as a visual reminder. It took them 5 years to diagnose me. I knew something was wrong in 2016 but my labs were normal, though there were no images taken. By late 2018 I was in a really bad way. I went through 3 endocrinologist. My last endo suggested I try NIH because I had no insurance. NIH required that I take the 24 hr urine cortisol test and the midnight saliva test once a week for 3 months. It was horrible. My dad drove me 17 hours to MD to have my surgery.

Thank you so much!!!!! Our symptoms are so similar. But I do “look” like a typical Cushings patient. Doing my first dexamethasone suppression test soon.

I love your new hair color! You’re beautiful ❤️

I'm amazed. How did you get through college???

Hi and thank you for these awesome videos. Question please, for your post-surgery anxiety and ptsd (so understandable), did you take anything like Lexapro or anything to help you get re-adjusted. Also, when you mention panic attack, are you able to please detail what those symptoms were? I ask bc my daughter is going through this and she always thinks the worst is going to happen. She is always convinced she’s going to get dizzy and faint. Or someone is going to die. Did they give you good meds for your post-op headaches? With cushings the headaches are awful so im so sorry the headaches are part of recovery. My heart goes out to everyone with this nasty disease. Warriors all of you!

Got my mri results back. I have two tumors in my pituitary gland. One on my right and one on my left side but what is weird is that the suppression test came back good even with all my symptoms.

I am close to 1 year after surgery and I am still afraid that it is going to come back.

Fellow cushie here! I’ve already had pituitary surgery once last month, but still have high cortisol. I’m getting a second surgery to remove residual tumor this month. I’m worried that some of my normal pituitary will have to be removed to successfully get rid of all the tumor. Did you have any normal pituitary gland removed or just the tumor? Thanks for sharing your experience with Cushing’s! It’s comforting to know I’m not alone in dealing with this!

Can you please tell about pregnancy if on hormone replacement for post op cushing

Hey, I am getting diagnosed now. So you were on the steroid after surgery and then tapered off to where you don't need it everyday, correct? Or do you still need a small amount of it?

We’re your prolactin levels elevated along with your cortisol?

I've experienced the pelvic floor issues. I was previously diagnosed with pcos, so thought it was that or endometriosis but I don't think it was now that I know about the cushings.

What does the ENDO say about getting pregnant, if that's possible? Anyone?

Did the wieght come off as a result of surgery or did you have to consistently work out to lose it.

Waiting for that Christian testimony (: ✝️