Videos like these seem to be the only way that people with medical issues can find any possibiliries. So tired of doctors saying everything is fine. For years. I am happy for you that you were diagnosed relatively quickly.
This just made me cry watching this, I got diagnosed a few months ago and have my surgery date to remove the tumor this Tuesday! I thought I was crazy for the longest time and have been going to doctors for 3 years now looking for answers that no one had. I finally have them and I feel so relieved but also so angry. It’s nice to know that there are people who have gone through the same thing and I really appreciate you sharing this.
How did the surgery go? I'm in quite a similar situation, but my surgery is in a couple of weeks. For years we thought my symptoms were PCOS and I very well may still have PCOS, but my mom had noticed that I was getting symptoms somewhat foreign to PCOS that then were further emphasized when I had a very dramatic cortisol test come back. I'm hopeful about the surgery but it's always worth hearing real stories from real people. I hope all is well ❤
I got the results of my labs yesterday, on my birthday of course. Honestly I’m just so glad to have an answer and know that all these issues I’ve been experiencing can be reversed! I have 98% of those symptoms
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.
Alli, I’m so grateful for your story. I’ve been searching for answers for the past 2 years: seeing specialists, doing tons of bloodwork - but every time the tests were “normal” and the Dr’s discounted my concerns. An MRI for another issue revealed the pituitary tumor. That’s what started my research. I have virtually every one of the symptoms of Cushings.
Gina! I’m so glad you are beginning to receive answers, I hope you are given a path forward soon. Thank you for watching and I’m so glad you found my story helpful. All my best 💗
I've xurrently been dealing with a mystery illness for over 10 yrs. Finally got to see an endocrinologist a few weeks ago and was pretty confident that I have this disease. And TBH it's been a nightmare, pain, sleeplessness, weight gain of almost 80lbs in 2 yrs, always hungry, no strength, I'm growing a small beard, my hands and feet are swollen, tense everywhere, abdominal repro pain, tight and painful in the hips, fat face, hair loss, and a new one of tachycardia in the last yr. Cushings explains all the symptoms I have been seeing over the years I just had no idea they were all connected. I went to endo for 12+ yrs off never ending pelvic pain and apparently chronic cortisol has been studied and shown to cause pelvic floor tightness and basically pelvic fibromyalsia in women. So if this is cushings I've gone over a decade struggling with probably well over a dozen Dr's telling me I'm crazy, that I'm fine, I'm just being a big baby. I've even had my family write me off as munchousins(sp?) That I'm just mentally ill. Though I've been in mental health treatment since 2010 due to my military service. My mental health is not in question with the mental health experts! So just having a diagnosis would make me feel some vindication. That for all these yrs I wasn't crazy or mentally ill I was legitimately in pain, severe chronic pain.
Suzanne! Thank you for sharing I can certainly relate to your struggles, it is absolutely horrible not knowing. I can’t even begin to explain how much better I felt having a diagnosis, even it meant I had a tumor. I definitely suggest joining a few Facebook groups, people have a lot of great insight into getting a diagnosis. I’ve joined a few and I’ve definitely learned a lot from other people. It’s also a really great outlet just to feel seen and heard by people who will definitely not think you’re crazy bc they’re dealing with the same things. How did it go with the endo?
@@ThatsRightUpMyAlliHI Alli. How did you get anyone to listen? What kind of doctor actually helped?we have spent so so much money and no answers. This seems to fit for countless reasons.
Thank you for the video, it was really informative. I'm a 64 year old lady & in Sept 2023 had a large tumour removed from my 4th ventricle which was pressing on my brain stem, I have almost all of the physical symptoms listed, terrible anxiety for about 6 years diagnosed with PTSD, this would be my 6th winter I haven't felt the cold, but the last couple of weeks during the day I have the fan on me but at night I'm now feeling the cold. Sweating has also been a problem, my arms would glisten with sweat, I couldn't handle humidity. What isn't mentioned is fatigue, I start to feel better at night time. I have really bad low back pain, it's effecting me standing to make a cup of tea now. I saw a dr last week who said nothing wrong, he said lose weight, it's all around my torso, my neck is thick, this is the heaviest in my life, I will not have a picture anymore because of my thick looking almost no neck, now when I sweat around my neck I get these what looks like pimples on my neck & chest. The one thing that I have really noticed is my tan, I don't go in the sun, my arms are very brown, I drove to my dr 2 weeks ago other than that I don't go outside, I hate being in the sun, that night my face & shoulders were red & felt sunburnt. I went through at least 6 episodes of total voice loss lasting 6 to 15 weeks each time, it was awful & a single constant croop type of cough. AAn ENT put me on a course of steroids & I didn't want to stop them, I felt so well, this was 2021. I also noticed on the hospital letter I was sent home with under medical issues it said I had glottis??? I can't remember the medical term but it means my throat beneath my voice box is narrowed, I can only assume the anaesthetist diagnosed this, nothing recorded before despite having the camera down my throat. The brain surgery was my 3rd, the 2nd one in Jan 2019 was botched, they tried to remove the tumour I recently had removed & they couldn't find it, who knows what damage was done to my brain. Any advice is really welcome, I currently have no life at all.
i haven’t finished the video yet but i just want to thank you so much for making it. i’m sitting here almost crying because you’re right, it’s so nice to hear from other people who have gone through/are going through the same thing as you! i was recently diagnosed with cushing’s after around 3 years of unexplained health problems, pursuing a PCOS diagnosis and getting nowhere with that. i recently had an MRI and will be getting my results soon then hopefully surgery. it can be lonely, i have wonderful friends and family and doctors around me but it’s hard to convey the toll this disease takes on you. i feel like i’ve been in a constant state of misery for the past few years and to finally know what’s wrong with me is great! it removes a lot of the guilt, as a lot of the symptoms i felt like were my fault for not trying hard enough or taking care of myself enough. and the mental symptoms are awful.. genuinely so unbearable.. i’m excited to get treatment. once again thank you so much for sharing, you’re so well spoken and this video is well structured!! can’t wait to finish and watch the rest :) and i send my love to anyone going through something similar, you’ve got this
Omg tysm for sharing visual images!! I’ve heard of the symptoms, but I didn’t relate it until seeing the before-during photos and thinking “this is it!! I know what she’s talking about!” I’ve had symptoms getting worse for years with no diagnosis from many different doctors, but never saw a visual progression to really comprehend this as it manifests in reality. You can clearly see from the images how much the face changed, how the hair changed color, texture and density and that blushing/tan without going in the sun. I thought these were all just symptoms of aging!! I still can’t get a diagnosis, but seeing this, I am going to pull out pictures from the past 8 years or so to compare and show my doctor just like you did. Yes, it’s been going on this long, my QoL is in the dumps. Gonna look for parts 2 and 3.
I was diagnosed with cushing's a couple months ago.. And its been rough. One of my symptom was diabetes type 2 which came very sudden. Like within a month. I've been in the hospital for the past 4.5 weeks and hae had my adrenal glands removed and a tumor removed from my pituitary gland. My sick period have been about 7-8 months. So for you to have had for years, i can imagine it being hell. But Im happy you're doing good now.
It’s crazy how people develop Cushing’s in different ways and what symptoms we develop. I was likely on the track for type 2 diabetes for sure but I think we caught it before it got to to bad. Wow what a wild ride for you. I hope your recovery goes well and you feel amazing soon ! (:
I developed diabetes with it too very quickly. Like normal one month and in the 500s the next. I kept it low by eating nothing but chicken and vegetables until I could get to surgery. That was in 2009.
You are so we'll spoken yet you speak in a way that everyone can understand. You're doing a great thing and these TH-cam videos are going to help a lot of people. I've never heard your story before so thank you for sharing your personal experience and being so open and vulnerable. I think you're great.
My mom had Cushing’s and at the same time Addison’s. The doctors did go with the surgery but the tumor was all over the pituitary gland and they couldn’t separate it from the gland so they took the pituitary out. She lasted for about 35 or so years. She also had the adrenal glands out too
Wow 😢I have never heard of those this before, both conditions together? What a nightmare I can’t even begin to comprehend this, how in the world did she survive this?
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.
I want to thank you. Because of your video, I am going to get up the courage to ask my doctor to test me for Cushing's. I have had this personal physician for 3 years. I have been misdiagnosed with Idiopathic Intracranial Hypertension then re-diagnosed with chronic daily migraines (both from the Cleveland Clinic). I am still seeing a neurologist at CC in Weston Florida. However, my symptoms strongly overlap with Cushing's. I also have rheumatoid arthritis....I just want help with the pain. Anyway, thank you for this and my hope is in Christ alone.
Wow! I haven’t looked into this much but maybe cushings can run in the family?? I would follow up with her doctors for sure and get tested. It can’t hurt (: thanks for watching 💗
interesting I bet it could run in families...but maybe not because of genes but because everyone is in the same environment, same food, same stressors, same toxins (things like mold in the walls etc.) a lot of what we used to think was genetic family traits is more closely epigenetic (abnormal genes turned on by toxins or trauma or all of the above). i'm in the middle of getting tested now and I see how some of my family members have signs of cushing too
Hi!! Thank you so much for sharing your story!! I’ve been having many of these symptoms for a few years now. I’m going to talk to my doctor and ask to get tested for Cushing’s. For me, it started with the fatigue and the acne. I then started to experience the itching and other symptoms. I have a question though. Did you have itching on your face? My doctors have tried to treat the itch and nothing works. Also, every time I go to the doctor, they tell me that they don’t see a rash, so they can’t figure out where it’s coming from. But now that I’m learning about Cushing’s, I’m thinking that it could be an invisible symptom.
Thank you for posting this! They're nearly 100% that I have something on my pituitary but what or how big we'll have to find out in time. After this, though, makes me think that maybe it's cushing's because I have an almost identical symptom list! Going on 10 years from my first symptoms and I'm just glad we're getting somewhere because, as you showed, the depression and myriad of symptoms can be so devastating.
I’m just going to flat out ask my doctor to test for this. I have almost all symptoms and have had them for quite a while now. Doctors seem to only want to treat the symptoms and not actually find out the cause.
Thank you so much. My daughter (13yo) is waiting for an appointment with an endocrinologist. She has a whole list of symptoms. I’m just praying for some help for her. As we look back, the symptoms started in 2018. She is already having cardiac symptoms. Again, great video!
Can I ask about the cardiac symptoms? My 18 year old has so many symptoms of cushings and has had heart problems too, which I never knew might be part of it until I saw your comment.
@@kaymack5304 Since I wrote this post, my daughter has been diagnosed with PCOS and type 2 diabetes. The doctors do not believe she has Cushing’s. She has sinus tachycardia with a resting heart rate of 120, which spikes to 160-190 just walking around. She has had this since 2018. It can be caused by Cushing’s because cortisol spikes norepinephrine which causes the heart rate to increase.
My endocrinologist ordered a Cortisol Free 24 hour urine test because he is very concerned that I have it. One of the things I was told by my Endo was that the tumors can be caused by prolong use of corticosteroids. Good luck to you and wish you all the best and love!
How has your treatment gone? I have to do the urine, salivary, and a second blood test in March. Unfortunately I got put on a steroid for an ear infection right after my first blood tests came back so have to wait a month for the steroids to clear out before doing any further testing. I hope you are well and healing
Thank you so much for sharing this! I've been going through a lot and I didn't have answers until just recently. The doctor that I have now is the first doctor to really listen to me and hear me out about what's been going on. She ordered me to get some blood work done bc we both had thought I had pcos. Come to find out, my blood work came back and confirmed that I do not but however, other things on my bloodwork came back concerning. I noticed that my prolactin was elevated and didn't know what that was until I googled it. I was shocked to see that it is a sign of a pituitary tumor. I didn't know what that was until I googled that. When I read all of the sympotoms of a PT, i have realized that i have every one of them! It finally made sense. As you have shared, waiting for your next appointment takes forever. I don't see my dr until the end of july to "confirm" the signs of cushings. There's a part of me thats relieved then there's a part of me that's scared. I'm also a college student as well as a soon to be homeschool mom so there's a million things running through my head on what life is going to look like from here. Thank you for being vulnerable and uploading these videos. I watched every single one. Mine hasn't been confirmed, but just like you, i just know. Thanks again ❤
Hi! Thank you for sharing, I will be praying you receive confirmation soon and that you can get help quickly. Thank you for watching my videos and I am so glad you found them helpful. Please keep me updated
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 so much for making this. you look like you're back to normal now! by the way...did your thin skin get thicker again after you treated the cushings?? I have every symptom on this list and finally years of confusion and awful symptoms and aesthetic changes and patterns in bloodwork (high cortisol, high aldosterone, etc.) are making sense. I see my endo tomorrow and i'm going to show her all the patterns i've noticed as we've been chasing a diagnosis. one of the most distressing symptoms besides my face getting rounder and rounder is my skin is so thin everywhere I look so aged almost overnight and it's like jiggly / saggy and i'm only 38, it was so tight and firm just a few months ago so I know this isn't normal aging, I actually am quite youthful before all this set in. hopeful that a correct diagnosis and treatment can start to turn this around because oh my god it's devastating. I don't recognize myself, I don't feel the same mentally at all I don't look like the person I was, it's insane and the depression is not just from the reaction to my physical changes (though that's really terrible) but also just feels chemical and constant as you described. like a current of stress constantly in me.
I had no idea all that you were dealing with during that time. I’m so sorry you went through that and so happy you are healthy and sharing your story now ❤️❤️
I just watched your video and it was amazing. I appreciate your honesty and your willingness to be vulnerable on camera. Having dealt with a chronic illness myself I too tried to use what I went through to help others not feel alone and to offer support. I am SO proud of you. Can’t wait for the next video. Onward and Upward!
Thanks for sharing your story. Another way a person can develop cushing's is if you have been dealing with stress for a long period of time. I believe a lot of the emotional and eating problems people we are having these days are due to a hormonal imbalance of some kind. I also feel most are due to the foods we are taking in that are contributing to these imbalances. Relationships play a part in imbalances, but that can,most of the time, be easily remedied. Our food is a bit harder unless you are able to eat healthier, which is more expensive or time consuming if you can provide your own. Exercise, working in a field you love, good relationships, eating as healthy as you can, and most of all putting God first are things we all can do to improve our life.
I want to thank you for your videos. I’m currently at the stage where my doctor has done some blood and urine tests and has found raised cortisol levels and said it is very likely I have cushings so I am now on a waiting list to see an endocrinologist at a hospital to confirm (I initially took this to the doctors at the start of June and with the way the NHS is it is probably going to take a while to get a diagnosis) I initially went to my doctor with a few random physical problems that I was wondering if they were related or not (rapid weight gain, inability to lose it, big stretch marks, darker and thicker body hair growth, longer healing time and easier scarring and bruising) But now thanks to information I have found online like yours I can go to my endocrinologist appointment with more knowledge. Visions changes, insomnia, mood swings, excessive sweating, curly hair (is this really a thing?? My hair suddenly became curly a year ago but I just put it down to humidity… all year) But all of those things I just wrote off. Knowing I can now inform the endocrinologist of all of these additional symptoms when I finally get my appointment with them gives me some sense of peace. It makes me feel like I have more of a case and I’m not just someone complaining because I have put on a lot of weight and can’t lose it. Again, I am at the stage where cushings hasn’t officially been confirmed yet but all the signs point towards it. Thank you for sharing your personal experience with having to deal with such a horrible disease and in the process, informing and reminding others that they’re not alone.
I had Cushing’s until they removed my adrenal gland which had a tumour. I was on the verge of collapse by the time I got the adrenalectomy. I think I had every symptom. Two and a half years later am still on cortisone tablets because my right adrenal gland stopped working during Cushing’s and is only slowly starting to function again.
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.
Ah, the insomnia. I loose so much hair in the shower. I ALWAYS have anxiety, and have a depression diagnosis. Has anyone tested my cortisol levels? Nope, but I have blood testing after Christmas.
Thank you for sharing. I'm going through this for the past year and am going to the doctor Monday for a referral. Something is not right I hope to find the answer. Very relatable thank you
I noticed you had flushing. I really struggle with flushing. I’m a pastor’s wife and can’t go to church because it’s too hot. I have to keep my house at 60 degrees. I found an endocrinologist who specializes is cushings and am in the process of being diagnosed. I don’t know if I have it but I look like a cushings patient minus the hair loss. What was you flushing symptom like?
I Could Definitely have cushings syndrome then, just hasn't been detected, I have noticed a rosacea like butterfly rash on my nose a little bit, sometimes my face looks fatter looks like I have a third chin, but goes away. It Comes and goes. It is facial swelling. I had slightly high blood pressure I feel maybe taychardia or supraventricular taychardia, I experienced an attack of vomiting extremely high heart rate, and I just rode it through not going to the hospital, the reason I assume taychardia is because of the dizziness, wooziness, periodically get confusion that comes and goes, feelings of impending doom, like I am going to die and go to hell type fear. The symptoms kinda subside when I take vyvanse over an extended period of time, i found inhaling primatine mist (epinephrine) temporarily helped the symptoms. I got a pot belly and skinny arms a hump on the backside of my neck just like the presentations for cushings!!! But undiagnosed and untreated
also, skin darkening the symptoms like what is explained for addisons disease (adrenal insufficiency) muscle weakness in my legs, they wobble after I lift something heavy at work. I'll look in the mirror and my appearance would change depending on how i felt. On days when I was tired or just felt off, that would be the same day I would have a fat looking face (maybe facial edema) but when I felt good and energized my face would look tight and normal again. That is something to do with adrenaline or dopamine imbalances!! What do you think?
So what type tests should i order to see if i have cushings? Like does a cortisol test prove it or is there multple cortisol tests that need to be ran? I believe my wife has this but I think her cortisol level was fine but she has like all these symptoms. So would there be other tests to take to see if she has it it because shes been down for two years and literally everuthing you spoke about feels like your speaking exactly like her. 😢
Thank you so much for making this video. I've been suffering for a longgggggg time. I've gained rapid amounts of weight..even with doing intermittent fasting/water fasting. I'm getting painful red stretch marks..I've lost a third of my hair...the list goes on and on and on. But when you said "I wanted to die everyday" it made my jaw drop..because I feel like I'm losing my mind & I'm severely depressed. My mental health is declining daily but theres no one to turn to. But I'm battling with feelings of wanting to die everyday too. I finally convinced my family Dr to refer me to an endocrinologist. I guess there's a loooong waiting list..SO..here I wait to be contacted by a new doctor, who I HOPE will listen to me. God help 🙏
I can definitely relate, I tried so many fad diets and workout routines in hopes of fixing my problems and nothing would work. The mental part of cushings is really the hardest part to over come. I definitely hope you can get in to see your endo soon! One thing I would suggest is asking your primary to order a cortisol blood test and 24 hours urine analysis. I would just ask if you can do it to speed up the process, can’t hurt to ask. Thank you for watching and I’m so glad you enjoyed the video (: best of luck
I’m watching this and I have alarm bells ringing up and down… I got an abnormal hormone result on a test when I was 21 and its just flown under the radar, but like, the second you mentioned hair loss and change of hair texture… my god. I thought I just had low testosterone. I’m waiting on bloodwork right now before they do more tests.
Did you have any kind of hypoglycaemia/ blood sugar issues? I've had all of these symptoms for so long ans have been to tbe doctors multiple times but they have never suggested this or tested my adrenals
The only thing i dint have is red purple stretch markss!!! And they dismiss it. I am so joeoless and frustrated. Please tell me if i have all the other symotims and not these and could still have cushings/pituitary tumor??
I went to NIH and had my pit tumor removed in 2021. I still believe it wasn't completely taken care of. I do know that they found I had an enlarged adrenal gland but no tumor was found. I don't even know what that could mean. I lost 30 lbs pretty quickly but I still have 35 lbs that's just stuck. I felt okay for about a year but now I'm starting to feel bad again but not in the same way.... frustrating.
I guarantee I have this I have pretty much every symptom. I went through years and years of extreme stress between a long term abusive relationship, the death of my father, loss of a career, and cancer all in a matter of a few years. My body has completely changed to exactly this and all the other symptoms. I don’t sleep. I was having panic attacks back during the end of the relationship No Dr has even began to mention this. I now have HPB and pre diabetes
Hlo any update regarding this because i also went through extreme stress due to my bf 's death after that i gained lot of weight other symptoms are buffalo hum irregular periods with less flow and got pcod etc..
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.
How many cortisol lab tests did you need to do? I currently have a 24urin and dexamethason test and my endocrinologist is still doing more tests instead of going for an scan or is this normal?
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..
God this is so similar to what I’ve been experiencing for the last 18+ months. There’s been times I was so Ill I honestly didn’t know if I’d wake up the next morning. I don’t recognise my face. I’m on long term Fludrocortisone. Can that in any way impede testing for cushings? I’m desperate to find answers. I no longer recognise myself. Thank you
How long have you been on fludrocortisone? Taking cortisone steroids can cause Cushing’s syndrome which is cushings symptoms but it’s caused by steroids and not a tumor. I can imagine it would impede testing. Do you have Addison disease? Why do you take fludrocortisone
Apparently the US doctor are not able to do their work, same in france, what a shame. They didnt even try to find an answer of the problem, they try 5 minutes and after that they try to put it on "psychiatric", depression...
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...😢
how much weight did youngain? I have gsined 10 kg in a year. Did you have the striae and buffalo hump that most cushings have? i dont but i have all the symptoms.You craved sweet foods because you craved energy! ..i have this at the moment..different to pregnancy cravings and period cravings.
I gained maybe 10-20 lbs in about 2 months but we were able to catch it quickly so I’m sure I would have gained much more if I let it go longer. Yes the cravings are very unique to cushings, it’s very different than anything else I have experienced!
I have cushing as wel, and i cope with the depression by ignoring every emotion and trying to forcably laugh. But that makes me constantly very tired and mad at everything and everyone for no reason. I know i cant trust my emotions and therefore just dont talk as much anymore because i am scared i will say hurtful things i don't mean. Its hard sometimes because my job is litterly hearing peoples problems and talking to them as a supervisor. So my face will/would blow up evertime i go to work because i have to suck up every emotion and withhold myself of exploding and just keep smiling. People think therefore i am always happy and nice and call me even peace itselve because i just keep smiling even in bad situations and try to overthink every word that leaves my mouth, and they think its cute when i get my blushy swollen baby face. But they dont realize that i am at that point a walking volcano thats ready to stab someone with the only reason of not feeling the burning pain in my muscles is the overstimulation of adrenaline and cortisol, which also made me addicted to overworking and pain because this increases my adrenaline which made me sometimes a superman that can work non stop (pain =felt like energy).
today i did tests and im diagnosed with cushing i think i have it since 2016 its almost 8 years , now i have myopathy , numbness , fasciculations , heart palpitations , ... especially fasciculations is it common and how you managed it ? its the worst period of my whole life
I’m glad you finally are getting answers! I didn’t experience those symptoms but I think it makes sense that you have them after having the disease for so long. It was definitely the worst period of my life as well but now you can finally get it taken care of with the surgery! Best of luck
Just got a results from my cortisol test…. It came back high. Now they are doing a saliva test. Insomnia is top on mine. I cant sleep. Hair is another issue. Cracked and unhealed skin too. Waiting to see whats next.
I am not good at doing TH-cam or subscribing to TH-camrs or anything like that but this was so informative and just makes me want to watch more and hear more! Sounds so difficult what you went through but I’m so thankful you’ve taken the space and time to share your story!
Videos like these seem to be the only way that people with medical issues can find any possibiliries. So tired of doctors saying everything is fine. For years. I am happy for you that you were diagnosed relatively quickly.
This just made me cry watching this, I got diagnosed a few months ago and have my surgery date to remove the tumor this Tuesday! I thought I was crazy for the longest time and have been going to doctors for 3 years now looking for answers that no one had. I finally have them and I feel so relieved but also so angry. It’s nice to know that there are people who have gone through the same thing and I really appreciate you sharing this.
How did the surgery go? I'm in quite a similar situation, but my surgery is in a couple of weeks. For years we thought my symptoms were PCOS and I very well may still have PCOS, but my mom had noticed that I was getting symptoms somewhat foreign to PCOS that then were further emphasized when I had a very dramatic cortisol test come back. I'm hopeful about the surgery but it's always worth hearing real stories from real people. I hope all is well ❤
I got the results of my labs yesterday, on my birthday of course. Honestly I’m just so glad to have an answer and know that all these issues I’ve been experiencing can be reversed! I have 98% of those symptoms
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.
100% TMS, you can heal this with a mindbody approach.
I got my face halfway back, but had to stop the process bc of other complications. The good news is that it IS possible.
@@Liat. Via what?
@@santeenl what's TMS?
@@AimeeMarsh-m5y the mindbody syndrome
Alli, I’m so grateful for your story. I’ve been searching for answers for the past 2 years: seeing specialists, doing tons of bloodwork - but every time the tests were “normal” and the Dr’s discounted my concerns. An MRI for another issue revealed the pituitary tumor. That’s what started my research. I have virtually every one of the symptoms of Cushings.
Gina! I’m so glad you are beginning to receive answers, I hope you are given a path forward soon. Thank you for watching and I’m so glad you found my story helpful. All my best 💗
I've xurrently been dealing with a mystery illness for over 10 yrs. Finally got to see an endocrinologist a few weeks ago and was pretty confident that I have this disease. And TBH it's been a nightmare, pain, sleeplessness, weight gain of almost 80lbs in 2 yrs, always hungry, no strength, I'm growing a small beard, my hands and feet are swollen, tense everywhere, abdominal repro pain, tight and painful in the hips, fat face, hair loss, and a new one of tachycardia in the last yr. Cushings explains all the symptoms I have been seeing over the years I just had no idea they were all connected. I went to endo for 12+ yrs off never ending pelvic pain and apparently chronic cortisol has been studied and shown to cause pelvic floor tightness and basically pelvic fibromyalsia in women. So if this is cushings I've gone over a decade struggling with probably well over a dozen Dr's telling me I'm crazy, that I'm fine, I'm just being a big baby. I've even had my family write me off as munchousins(sp?) That I'm just mentally ill. Though I've been in mental health treatment since 2010 due to my military service. My mental health is not in question with the mental health experts! So just having a diagnosis would make me feel some vindication. That for all these yrs I wasn't crazy or mentally ill I was legitimately in pain, severe chronic pain.
Suzanne! Thank you for sharing I can certainly relate to your struggles, it is absolutely horrible not knowing. I can’t even begin to explain how much better I felt having a diagnosis, even it meant I had a tumor.
I definitely suggest joining a few Facebook groups, people have a lot of great insight into getting a diagnosis. I’ve joined a few and I’ve definitely learned a lot from other people. It’s also a really great outlet just to feel seen and heard by people who will definitely not think you’re crazy bc they’re dealing with the same things. How did it go with the endo?
Update please!!
Update?
Have You got the diagnosis? From the same Endocrinologist to whom you have been visiting since past 10years
This is SO WELL DONE! Thanks for being vulnerable and sharing your story with us ❤
THANK YOU MY LOVE ❤❤
@@ThatsRightUpMyAlliHI Alli. How did you get anyone to listen? What kind of doctor actually helped?we have spent so so much money and no answers. This seems to fit for countless reasons.
Thank you for the video, it was really informative. I'm a 64 year old lady & in Sept 2023 had a large tumour removed from my 4th ventricle which was pressing on my brain stem, I have almost all of the physical symptoms listed, terrible anxiety for about 6 years diagnosed with PTSD, this would be my 6th winter I haven't felt the cold, but the last couple of weeks during the day I have the fan on me but at night I'm now feeling the cold. Sweating has also been a problem, my arms would glisten with sweat, I couldn't handle humidity. What isn't mentioned is fatigue, I start to feel better at night time. I have really bad low back pain, it's effecting me standing to make a cup of tea now. I saw a dr last week who said nothing wrong, he said lose weight, it's all around my torso, my neck is thick, this is the heaviest in my life, I will not have a picture anymore because of my thick looking almost no neck, now when I sweat around my neck I get these what looks like pimples on my neck & chest.
The one thing that I have really noticed is my tan, I don't go in the sun, my arms are very brown, I drove to my dr 2 weeks ago other than that I don't go outside, I hate being in the sun, that night my face & shoulders were red & felt sunburnt. I went through at least 6 episodes of total voice loss lasting 6 to 15 weeks each time, it was awful & a single constant croop type of cough. AAn ENT put me on a course of steroids & I didn't want to stop them, I felt so well, this was 2021. I also noticed on the hospital letter I was sent home with under medical issues it said I had glottis??? I can't remember the medical term but it means my throat beneath my voice box is narrowed, I can only assume the anaesthetist diagnosed this, nothing recorded before despite having the camera down my throat. The brain surgery was my 3rd, the 2nd one in Jan 2019 was botched, they tried to remove the tumour I recently had removed & they couldn't find it, who knows what damage was done to my brain. Any advice is really welcome, I currently have no life at all.
i haven’t finished the video yet but i just want to thank you so much for making it. i’m sitting here almost crying because you’re right, it’s so nice to hear from other people who have gone through/are going through the same thing as you! i was recently diagnosed with cushing’s after around 3 years of unexplained health problems, pursuing a PCOS diagnosis and getting nowhere with that. i recently had an MRI and will be getting my results soon then hopefully surgery.
it can be lonely, i have wonderful friends and family and doctors around me but it’s hard to convey the toll this disease takes on you. i feel like i’ve been in a constant state of misery for the past few years and to finally know what’s wrong with me is great! it removes a lot of the guilt, as a lot of the symptoms i felt like were my fault for not trying hard enough or taking care of myself enough. and the mental symptoms are awful.. genuinely so unbearable.. i’m excited to get treatment. once again thank you so much for sharing, you’re so well spoken and this video is well structured!! can’t wait to finish and watch the rest :) and i send my love to anyone going through something similar, you’ve got this
Omg tysm for sharing visual images!! I’ve heard of the symptoms, but I didn’t relate it until seeing the before-during photos and thinking “this is it!! I know what she’s talking about!” I’ve had symptoms getting worse for years with no diagnosis from many different doctors, but never saw a visual progression to really comprehend this as it manifests in reality. You can clearly see from the images how much the face changed, how the hair changed color, texture and density and that blushing/tan without going in the sun. I thought these were all just symptoms of aging!! I still can’t get a diagnosis, but seeing this, I am going to pull out pictures from the past 8 years or so to compare and show my doctor just like you did. Yes, it’s been going on this long, my QoL is in the dumps. Gonna look for parts 2 and 3.
I was diagnosed with cushing's a couple months ago.. And its been rough. One of my symptom was diabetes type 2 which came very sudden. Like within a month. I've been in the hospital for the past 4.5 weeks and hae had my adrenal glands removed and a tumor removed from my pituitary gland. My sick period have been about 7-8 months. So for you to have had for years, i can imagine it being hell. But Im happy you're doing good now.
It’s crazy how people develop Cushing’s in different ways and what symptoms we develop. I was likely on the track for type 2 diabetes for sure but I think we caught it before it got to to bad.
Wow what a wild ride for you. I hope your recovery goes well and you feel amazing soon ! (:
How are you doing now?
I developed diabetes with it too very quickly. Like normal one month and in the 500s the next. I kept it low by eating nothing but chicken and vegetables until I could get to surgery. That was in 2009.
You are so we'll spoken yet you speak in a way that everyone can understand. You're doing a great thing and these TH-cam videos are going to help a lot of people. I've never heard your story before so thank you for sharing your personal experience and being so open and vulnerable. I think you're great.
Thank you Therese🥹 I’m so glad you enjoyed it!
My mom had Cushing’s and at the same time Addison’s. The doctors did go with the surgery but the tumor was all over the pituitary gland and they couldn’t separate it from the gland so they took the pituitary out. She lasted for about 35 or so years. She also had the adrenal glands out too
Wow 😢I have never heard of those this before, both conditions together? What a nightmare I can’t even begin to comprehend this, how in the world did she survive this?
Thank you so much for telling us your story. I’m so thankful that I found you!
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.
Holy cow! What an amazing self advocate you were! I hope you’re doing ok ❤
Oh no I’m so sorry what a nightmare 😢 hugs 🫂 ❤
I want to thank you. Because of your video, I am going to get up the courage to ask my doctor to test me for Cushing's. I have had this personal physician for 3 years. I have been misdiagnosed with Idiopathic Intracranial Hypertension then re-diagnosed with chronic daily migraines (both from the Cleveland Clinic). I am still seeing a neurologist at CC in Weston Florida. However, my symptoms strongly overlap with Cushing's. I also have rheumatoid arthritis....I just want help with the pain. Anyway, thank you for this and my hope is in Christ alone.
Sorry if that didn't quite make sense. Blessings to you.
This is really interesting.. I have many of these symptoms and my mom was diagnosed with Cushings about a year ago.
Wow! I haven’t looked into this much but maybe cushings can run in the family?? I would follow up with her doctors for sure and get tested. It can’t hurt (: thanks for watching 💗
Get tested. Running in families is supposed to be super rare, but I'm sure it's underreported.
interesting I bet it could run in families...but maybe not because of genes but because everyone is in the same environment, same food, same stressors, same toxins (things like mold in the walls etc.) a lot of what we used to think was genetic family traits is more closely epigenetic (abnormal genes turned on by toxins or trauma or all of the above). i'm in the middle of getting tested now and I see how some of my family members have signs of cushing too
Thank you so much for speaking on this and doing this video
THATS MY GIRL!!!! I love this Allison. You’re amazing 🥲🤍
Love you Crystal (,:
Hi!! Thank you so much for sharing your story!! I’ve been having many of these symptoms for a few years now. I’m going to talk to my doctor and ask to get tested for Cushing’s. For me, it started with the fatigue and the acne. I then started to experience the itching and other symptoms. I have a question though. Did you have itching on your face? My doctors have tried to treat the itch and nothing works. Also, every time I go to the doctor, they tell me that they don’t see a rash, so they can’t figure out where it’s coming from. But now that I’m learning about Cushing’s, I’m thinking that it could be an invisible symptom.
Thank you for posting this! They're nearly 100% that I have something on my pituitary but what or how big we'll have to find out in time. After this, though, makes me think that maybe it's cushing's because I have an almost identical symptom list! Going on 10 years from my first symptoms and I'm just glad we're getting somewhere because, as you showed, the depression and myriad of symptoms can be so devastating.
Thank you so much for this video, because I’m am just going through an investigation of if I has Cushing disease
You’re amazing for sharing your journey to help others❤ you’re such a sweet soul
I’m just going to flat out ask my doctor to test for this. I have almost all symptoms and have had them for quite a while now. Doctors seem to only want to treat the symptoms and not actually find out the cause.
Thank you so much. My daughter (13yo) is waiting for an appointment with an endocrinologist. She has a whole list of symptoms. I’m just praying for some help for her. As we look back, the symptoms started in 2018. She is already having cardiac symptoms. Again, great video!
Can I ask about the cardiac symptoms? My 18 year old has so many symptoms of cushings and has had heart problems too, which I never knew might be part of it until I saw your comment.
@@kaymack5304 Since I wrote this post, my daughter has been diagnosed with PCOS and type 2 diabetes. The doctors do not believe she has Cushing’s. She has sinus tachycardia with a resting heart rate of 120, which spikes to 160-190 just walking around. She has had this since 2018. It can be caused by Cushing’s because cortisol spikes norepinephrine which causes the heart rate to increase.
My endocrinologist ordered a Cortisol Free 24 hour urine test because he is very concerned that I have it. One of the things I was told by my Endo was that the tumors can be caused by prolong use of corticosteroids. Good luck to you and wish you all the best and love!
How has your treatment gone? I have to do the urine, salivary, and a second blood test in March. Unfortunately I got put on a steroid for an ear infection right after my first blood tests came back so have to wait a month for the steroids to clear out before doing any further testing.
I hope you are well and healing
Thank you so much for sharing this! I've been going through a lot and I didn't have answers until just recently. The doctor that I have now is the first doctor to really listen to me and hear me out about what's been going on. She ordered me to get some blood work done bc we both had thought I had pcos. Come to find out, my blood work came back and confirmed that I do not but however, other things on my bloodwork came back concerning. I noticed that my prolactin was elevated and didn't know what that was until I googled it. I was shocked to see that it is a sign of a pituitary tumor. I didn't know what that was until I googled that. When I read all of the sympotoms of a PT, i have realized that i have every one of them! It finally made sense. As you have shared, waiting for your next appointment takes forever. I don't see my dr until the end of july to "confirm" the signs of cushings. There's a part of me thats relieved then there's a part of me that's scared. I'm also a college student as well as a soon to be homeschool mom so there's a million things running through my head on what life is going to look like from here.
Thank you for being vulnerable and uploading these videos. I watched every single one. Mine hasn't been confirmed, but just like you, i just know. Thanks again ❤
Hi! Thank you for sharing, I will be praying you receive confirmation soon and that you can get help quickly. Thank you for watching my videos and I am so glad you found them helpful. Please keep me updated
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 so much for making this. you look like you're back to normal now! by the way...did your thin skin get thicker again after you treated the cushings?? I have every symptom on this list and finally years of confusion and awful symptoms and aesthetic changes and patterns in bloodwork (high cortisol, high aldosterone, etc.) are making sense. I see my endo tomorrow and i'm going to show her all the patterns i've noticed as we've been chasing a diagnosis. one of the most distressing symptoms besides my face getting rounder and rounder is my skin is so thin everywhere I look so aged almost overnight and it's like jiggly / saggy and i'm only 38, it was so tight and firm just a few months ago so I know this isn't normal aging, I actually am quite youthful before all this set in. hopeful that a correct diagnosis and treatment can start to turn this around because oh my god it's devastating. I don't recognize myself, I don't feel the same mentally at all I don't look like the person I was, it's insane and the depression is not just from the reaction to my physical changes (though that's really terrible) but also just feels chemical and constant as you described. like a current of stress constantly in me.
Me … I’ve got saggy thin crepey skin and new stretch marks everywhere .
I had no idea all that you were dealing with during that time. I’m so sorry you went through that and so happy you are healthy and sharing your story now ❤️❤️
It was such a crazy time!! Stronger because of it! Love you stephy!!
I just watched your video and it was amazing. I appreciate your honesty and your willingness to be vulnerable on camera. Having dealt with a chronic illness myself I too tried to use what I went through to help others not feel alone and to offer support. I am SO proud of you. Can’t wait for the next video. Onward and Upward!
Thank you Patty!! So thankful to be surrounded by strong and loving women who build one another up!!
Love your candor and the bloopers 😂. You have an amazing ability to keep it dignified honest and lighthearted.
@@stephanievandell8382 Thank you Stephanie!! (:
Thanks for sharing your story. Another way a person can develop cushing's is if you have been dealing with stress for a long period of time. I believe a lot of the emotional and eating problems people we are having these days are due to a hormonal imbalance of some kind. I also feel most are due to the foods we are taking in that are contributing to these imbalances. Relationships play a part in imbalances, but that can,most of the time, be easily remedied. Our food is a bit harder unless you are able to eat healthier, which is more expensive or time consuming if you can provide your own. Exercise, working in a field you love, good relationships, eating as healthy as you can, and most of all putting God first are things we all can do to improve our life.
Thank you , very helpful!! Did you have stretch marks as symptoms?
I want to thank you for your videos.
I’m currently at the stage where my doctor has done some blood and urine tests and has found raised cortisol levels and said it is very likely I have cushings so I am now on a waiting list to see an endocrinologist at a hospital to confirm (I initially took this to the doctors at the start of June and with the way the NHS is it is probably going to take a while to get a diagnosis)
I initially went to my doctor with a few random physical problems that I was wondering if they were related or not (rapid weight gain, inability to lose it, big stretch marks, darker and thicker body hair growth, longer healing time and easier scarring and bruising)
But now thanks to information I have found online like yours I can go to my endocrinologist appointment with more knowledge.
Visions changes, insomnia, mood swings, excessive sweating, curly hair (is this really a thing?? My hair suddenly became curly a year ago but I just put it down to humidity… all year)
But all of those things I just wrote off. Knowing I can now inform the endocrinologist of all of these additional symptoms when I finally get my appointment with them gives me some sense of peace. It makes me feel like I have more of a case and I’m not just someone complaining because I have put on a lot of weight and can’t lose it.
Again, I am at the stage where cushings hasn’t officially been confirmed yet but all the signs point towards it.
Thank you for sharing your personal experience with having to deal with such a horrible disease and in the process, informing and reminding others that they’re not alone.
I had Cushing’s until they removed my adrenal gland which had a tumour. I was on the verge of collapse by the time I got the adrenalectomy. I think I had every symptom. Two and a half years later am still on cortisone tablets because my right adrenal gland stopped working during Cushing’s and is only slowly starting to function again.
Wow! I’m so glad your glands are starting to function again!
@@ThatsRightUpMyAlli well one, the other one went in the trash 😂. It’s good you’re doing this. I also looked for videos on TH-cam at the time.
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.
Ah, the insomnia. I loose so much hair in the shower. I ALWAYS have anxiety, and have a depression diagnosis.
Has anyone tested my cortisol levels? Nope, but I have blood testing after Christmas.
Hey any update ??
Going through all of it right now
I think you have just given me the answer I was looking for . Almost0years later I have changed . Thank you .
I'm so glad this was helpful!! I wish you the best of luck
Thank you for sharing. I'm going through this for the past year and am going to the doctor Monday for a referral. Something is not right I hope to find the answer. Very relatable thank you
I noticed you had flushing. I really struggle with flushing. I’m a pastor’s wife and can’t go to church because it’s too hot. I have to keep my house at 60 degrees. I found an endocrinologist who specializes is cushings and am in the process of being diagnosed. I don’t know if I have it but I look like a cushings patient minus the hair loss. What was you flushing symptom like?
I constantly had a red face, I wasn't necessarily hot all the time but definitely was sweating more than normal. I hope that helps!
Update
I Could Definitely have cushings syndrome then, just hasn't been detected, I have noticed a rosacea like butterfly rash on my nose a little bit, sometimes my face looks fatter looks like I have a third chin, but goes away. It Comes and goes. It is facial swelling. I had slightly high blood pressure I feel maybe taychardia or supraventricular taychardia, I experienced an attack of vomiting extremely high heart rate, and I just rode it through not going to the hospital, the reason I assume taychardia is because of the dizziness, wooziness, periodically get confusion that comes and goes, feelings of impending doom, like I am going to die and go to hell type fear. The symptoms kinda subside when I take vyvanse over an extended period of time, i found inhaling primatine mist (epinephrine) temporarily helped the symptoms. I got a pot belly and skinny arms a hump on the backside of my neck just like the presentations for cushings!!! But undiagnosed and untreated
also, skin darkening the symptoms like what is explained for addisons disease (adrenal insufficiency) muscle weakness in my legs, they wobble after I lift something heavy at work. I'll look in the mirror and my appearance would change depending on how i felt. On days when I was tired or just felt off, that would be the same day I would have a fat looking face (maybe facial edema) but when I felt good and energized my face would look tight and normal again. That is something to do with adrenaline or dopamine imbalances!! What do you think?
I'm in the process of testing,but my hair went from pretty curly to almost wavy,stringy and straight in some areas.I miss my curly hair
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
Thank you for sharing this…
Of course !!
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 .
So what type tests should i order to see if i have cushings? Like does a cortisol test prove it or is there multple cortisol tests that need to be ran? I believe my wife has this but I think her cortisol level was fine but she has like all these symptoms. So would there be other tests to take to see if she has it it because shes been down for two years and literally everuthing you spoke about feels like your speaking exactly like her. 😢
Please respond to my comment. 😢
Thank you so much for making this video. I've been suffering for a longgggggg time. I've gained rapid amounts of weight..even with doing intermittent fasting/water fasting. I'm getting painful red stretch marks..I've lost a third of my hair...the list goes on and on and on. But when you said "I wanted to die everyday" it made my jaw drop..because I feel like I'm losing my mind & I'm severely depressed. My mental health is declining daily but theres no one to turn to. But I'm battling with feelings of wanting to die everyday too. I finally convinced my family Dr to refer me to an endocrinologist. I guess there's a loooong waiting list..SO..here I wait to be contacted by a new doctor, who I HOPE will listen to me.
God help 🙏
I can definitely relate, I tried so many fad diets and workout routines in hopes of fixing my problems and nothing would work.
The mental part of cushings is really the hardest part to over come. I definitely hope you can get in to see your endo soon! One thing I would suggest is asking your primary to order a cortisol blood test and 24 hours urine analysis. I would just ask if you can do it to speed up the process, can’t hurt to ask. Thank you for watching and I’m so glad you enjoyed the video (: best of luck
Please see a female endocrinologist if possible. A male endocrinologist blew off a patient and didn’t even do any blood tests.
I’m so scared I think I might have it 😭
I’m watching this and I have alarm bells ringing up and down…
I got an abnormal hormone result on a test when I was 21 and its just flown under the radar, but like, the second you mentioned hair loss and change of hair texture… my god.
I thought I just had low testosterone.
I’m waiting on bloodwork right now before they do more tests.
Such good information. Thanks so much for sharing your story Alli!! ❤️🥺
Thank you 🥹💗
Mine also fell out then grew back very curly. Thank you for sharing. I’m waiting on test results now ❤
Hi from Sweden 👋🏼🇸🇪 Thank you for sharing! Appreciate this information tho I have many of theese symptoms 🙏🏼
The tunnel vision thing sounds like when you're in fight or flight mode, which tracks with the constantly elevated stress hormones.
Thank you so much !!!
Did you have any kind of hypoglycaemia/ blood sugar issues? I've had all of these symptoms for so long ans have been to tbe doctors multiple times but they have never suggested this or tested my adrenals
The only thing i dint have is red purple stretch markss!!! And they dismiss it. I am so joeoless and frustrated. Please tell me if i have all the other symotims and not these and could still have cushings/pituitary tumor??
I went to NIH and had my pit tumor removed in 2021. I still believe it wasn't completely taken care of. I do know that they found I had an enlarged adrenal gland but no tumor was found. I don't even know what that could mean.
I lost 30 lbs pretty quickly but I still have 35 lbs that's just stuck. I felt okay for about a year but now I'm starting to feel bad again but not in the same way.... frustrating.
Thank you, this is exactly what I am going through 🤗❤️
I guarantee I have this I have pretty much every symptom. I went through years and years of extreme stress between a long term abusive relationship, the death of my father, loss of a career, and cancer all in a matter of a few years. My body has completely changed to exactly this and all the other symptoms. I don’t sleep. I was having panic attacks back during the end of the relationship
No Dr has even began to mention this. I now have HPB and pre diabetes
Hlo any update regarding this because i also went through extreme stress due to my bf 's death after that i gained lot of weight other symptoms are buffalo hum irregular periods with less flow and got pcod etc..
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.
Super helpful!
Thank you so much I really appreciate that !!
How many cortisol lab tests did you need to do? I currently have a 24urin and dexamethason test and my endocrinologist is still doing more tests instead of going for an scan or is this normal?
I’m going through it the same way
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..
God this is so similar to what I’ve been experiencing for the last 18+ months. There’s been times I was so Ill I honestly didn’t know if I’d wake up the next morning. I don’t recognise my face. I’m on long term Fludrocortisone. Can that in any way impede testing for cushings? I’m desperate to find answers. I no longer recognise myself. Thank you
How long have you been on fludrocortisone? Taking cortisone steroids can cause Cushing’s syndrome which is cushings symptoms but it’s caused by steroids and not a tumor. I can imagine it would impede testing. Do you have Addison disease? Why do you take fludrocortisone
100% TMS, you can heal this with a mindbody approach.
Im being tested for cushings my cortisol is 1450 nmol
I had Cushing disease. It was awful 😣
Apparently the US doctor are not able to do their work, same in france, what a shame.
They didnt even try to find an answer of the problem, they try 5 minutes and after that they try to put it on "psychiatric", depression...
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...😢
how much weight did youngain? I have gsined 10 kg in a year. Did you have the striae and buffalo hump that most cushings have? i dont but i have all the symptoms.You craved sweet foods because you craved energy! ..i have this at the moment..different to pregnancy cravings and period cravings.
I gained maybe 10-20 lbs in about 2 months but we were able to catch it quickly so I’m sure I would have gained much more if I let it go longer.
Yes the cravings are very unique to cushings, it’s very different than anything else I have experienced!
Does everybody have the purple stretch marks?
Not all. This is a disease that has a lot of rules but also many exceptions to the rule.
I do and have hair growing out of them
I have cushing as wel, and i cope with the depression by ignoring every emotion and trying to forcably laugh. But that makes me constantly very tired and mad at everything and everyone for no reason. I know i cant trust my emotions and therefore just dont talk as much anymore because i am scared i will say hurtful things i don't mean. Its hard sometimes because my job is litterly hearing peoples problems and talking to them as a supervisor. So my face will/would blow up evertime i go to work because i have to suck up every emotion and withhold myself of exploding and just keep smiling.
People think therefore i am always happy and nice and call me even peace itselve because i just keep smiling even in bad situations and try to overthink every word that leaves my mouth, and they think its cute when i get my blushy swollen baby face. But they dont realize that i am at that point a walking volcano thats ready to stab someone with the only reason of not feeling the burning pain in my muscles is the overstimulation of adrenaline and cortisol, which also made me addicted to overworking and pain because this increases my adrenaline which made me sometimes a superman that can work non stop (pain =felt like energy).
U ev speak out my hear😭❤
today i did tests and im diagnosed with cushing i think i have it since 2016 its almost 8 years , now i have myopathy , numbness , fasciculations , heart palpitations , ... especially fasciculations is it common and how you managed it ? its the worst period of my whole life
I’m glad you finally are getting answers! I didn’t experience those symptoms but I think it makes sense that you have them after having the disease for so long. It was definitely the worst period of my life as well but now you can finally get it taken care of with the surgery! Best of luck
Where do you have numbness?
AND my hair is falling out again (mine fell out firstly in 2020) and I have all the other symptoms 😂 I have to laugh. I do cry all the time though
How interesting! We have very similar stories!
Is a big tummy caused due to this
Yes
Yes
🤣🤣 beginning!!
It’s rough out here 😮💨😂
Just got a results from my cortisol test…. It came back high. Now they are doing a saliva test.
Insomnia is top on mine. I cant sleep.
Hair is another issue.
Cracked and unhealed skin too.
Waiting to see whats next.
❤❤❤❤❤❤
⭐ 𝐩𝓻Ỗ𝓂Ø𝓈Ｍ
Ohh I have a rare disease that I can’t lift heavy things anymore!!!
Sorry to hear that. Praying for you
I am not good at doing TH-cam or subscribing to TH-camrs or anything like that but this was so informative and just makes me want to watch more and hear more! Sounds so difficult what you went through but I’m so thankful you’ve taken the space and time to share your story!
Thank you for your love and support Hailee
Please don’t bang your ring on the table over and over. It is hard to tune out. 🥹