Symptoms of Cushings Disease
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- Опубліковано 19 бер 2020
- Hi, I'm Noura and I have Cyclical Cushings Disease! Subscribe to me for more information on cyclical cushings disease, how to test, how to get diagnosed, and follow my process as I head forward to brain surgery!
Follow my instagram: @chronicallyours_
Lots of love, and good luck on your journey!
Video by Ashley Marinaccio
Well done Noura, so many people going undiagnosed with Cushing's and most doctors very arrogant and dismissive, and not at all interested in diagnosing it... because it's so rare! It's rare because they never correctly diagnose it, it's always put down as PCOS. You videos are so incredibly helpful. Doctors should see them so they might actually learn something about this disease.
So glad my videos have helped you!
You are me. The end. Incredible. We’re fucking warrior beats. PeriodT!
Thank you SO much for being vulnerable and sharing. I am going to get tested.
I am so sorry for everything you are going through.
Thank you , your video is eye opening
THANK YOU for making this video!!! I was diagnosed with hypothyroidism recently and have been on medication and still have a feeling of just not feeling “normal”. I have almost all of the same symptoms of you, but when discussing with my doctor they didn’t test further and passed it off as hypothyroidism being the cause. I’m seeing a new doctor soon, so hopefully we can figure out if anything else is going on!
I hope you're able to find all the anwers you're looking for!!
Hey! Can I ask what your TSH was when they diagnosed you with hypothyroidism?
You are such a beautiful person inside and out! It takes brilliance, selflessness and bravery to share a personal story with strangers. Thank you thank you ! You have most likely have saved many lives 🥰🙏🏻👏🏻👏🏻❤
This comment is so sweet thank you
@@Chronicallyyours_ 🤗🥰
Thanks this will be so helpful for my test. It's one thing to just hear about a condition but a different thing to meet or find out about someone with it. I appreciate you sharing ❤
Glad I can Help!
Amazing info. Thank you
Thank you for sharing this and for making this video.
Thank you for sharing.
Ty for making this video. I’ve had symptoms you listed for years now after suffering an asthma attack and being put on Prednisone (steroids); last yr. my obgyn tried to diagnose me as PCOS after I shared my very regular periods disappeared and put me on Metformin. I refused to take it bc I don’t believe I really have PCOS! I’ve never heard of cyclical cushings till now. I’m doing a deep dive bc I think this is what’s happening w/me! Again ty for your bravery. You are putting positivity into the world by helping folks like us. ❤
I'm so glad it's been helping you! Wishing you the best
Just came across your video, I’ve been diagnosed with Cushing disease and I also have a pituitary tumor. It totally sucks!!! Thank you for this. Very informative!
so glad my videos have helped you!! best of luck
This is so so so helpful!!! I’m getting tested right now!!
So glad its been helpful!
Ohmygod SUPER helpful!!! Thank you!!!!!
this is a very good video.Very informative.thank you
Glad it was helpful!
Oh my God I am happy I found your Chanel I have cushing and not 100% diagnostic dont know what more my doctor need I have pco syndrome too and the migraines are getting so worst
I’m so sorry!! Please check out my video about testing! Hopefully it can help you
Thanks for teaching
Dear Girl,
You are example of strong women …because you ain’t crying for attention but spreading awareness. I pray to god you and all suffering from this disease be cured 😇Please start with Yoga and Pranayama (Breathing Exercise) daily and trust me miracles will come faster .❤
Thanks a lot
Thank you for your informative video, I just went for my test this morning after having symptoms for a long, long time. The nurse had to get a bag of ice for the ACTH. Years ago there was an "incidental finding" of possible pituitary tumour on an MRI (I am a migraine patient). But now I am very overweight, have sleep apnea and tons of the symptoms including striae and horrible sweating including sweat. My sweat STINKS and my skin is super oily. It has been very frustrating gaining the weight as I don't eat a huge amount, and have always been very careful with my diet.
Anyway it is very helpful to see your videos as I will have an idea what I am going to be dealing with. Thanks x
I'm so glad my videos have helped you! Wishing you the best of luck in your diagnostic journey!
Had my first endocrinologist appointment two weeks ago and I had to push for testing, thank you for sharing your experience. I would like to ask you some questions if possible.
HMU up on TikTok
Thank you so much for this video! very clear and helpful. I'm waiting for blood cortisol results as I have a cortisol related eye disease. I have most of these symptoms.
im glad its been able to help you!
My God. I’ve had purple strae since I was 17 in senior year of HS which was 2004.
No wonder i almost died from a heart fistula and massive aneurysm in 2016.
I never knew the purple was odd - just thought I looked like the FL road map, or like I was mauled by a tiger.
They are faded now, but still some color. Also at 17/18 I got massive ones on my sides, that are now light as well. Never knew they were ACTUALLY different from typical stretch marks. Holy shit. And yes, buffalo hump and moon face. My face looks like it’s meant for a 450lb body. I am only 220.
Sorry I really took a break for a while!! Hope everything is going well for you!
Nice present! I am confused whether I have PCOS or Cushing’s because I am not sure the white stretch marks on my body are caused by which one. But now I am clear. Thanks and all the best :)
Glad I can help!! Def do a cushings cortisol workup if you think that it could be cushings. Best of luck!
you are so pretty noura .hope you are getting better each day healthwise. im myself searching out for symptoms as i got tested for many things for this unexplained weight gain , but nothing came out
thank you so much!! I'm sorry you are still searching!! Might I recommend testing for PCOS, CAH and Hashimotos if cushing's is a no go?
I just got diagnosed with it and have a HUGE buffulo hump (since 11 I'm now 25 its just been growing and growing) which is what tipped my new doctor off. Straight up was told it was because of my posture for a few years tho lmfao
So helpful
I started having insomnia about 6 months ago. Before then, I never had a problem sleeping. I have almost all the symptoms you mentioned. I was diagnosed about 10 years ago with pcos, but now I'm definitely thinking cushings.
absolutely worth getting tested!
This is fascinating, I’m supposed to get a spit test in a week, I had to stop with a hydrocortisone topical that I was taking first. I’m 54 and I have gradually gotten worse and worse symptoms. My new endocrinologist looked at me and did and exam and it all comes down to the spit test and one other test…I’m nervous that they’re either going to find that or not find it. Hopefully I can get some answers bc it’s been years
Hi!! I do recommend at least 8 tests before ruling out cushings, and even that is low!
What video of yours talks about the highs and lows! I’ve been looking for it
ua-cam.com/video/GE3WqpG0OtI/v-deo.html
I have every single symptom except acne (only bc I’m on BC) praying for a diagnosis before I die!!!!!! Already have major heart damage
I hope you get a diagnosis soon!!!
I am a recovered patient from Cushing's syndrome and my case was caused by a epilepsy medication abd it was increasing cortisol overtime and wasn't known for 2 years. I'm 16 now and it stunt my growth before but my growth hormone is recovered and all the 14kg gain instantly shredded off in just 5 weeks after treatment. My dark knuckles are still here but I don't care lol.
that's great for you!! and hey dark knuckles are just a sign of what you've been through
Hi Noura
Would you mind telling me if the neck hump is soft or firm?
I have developed a hump on my neck which is soft but increases in size and then goes down a little. I have also severe weight gain, deep purple vein like marks on my lower abdomen and my cheeks become inflamed but worse than rosacea.
I have other symptoms and I keep coming back to bushings so going to ask my Dr to check my cortisol levels.
Thank you for this information and I hope you will see things get better xo
mine is firm ish? kind of like memory foam
(i am from italy sorry for my english lol) i just found out about this and now everything it's clear... i am 24 i have those symptoms except buffalo hump, i have lot of central body fat and lot of stretch marks. my life with this disease have been a nightmare i have been isolated for so long i have been bullied by almost everyone for my look and my attitudes caused by social anxiety. now that i know about this disease i want to get diagnosed and cure, scared of the surgery so much! but i hope to get help to get my life back.
Sorry I really took a break for a while!! Hope everything is going well for you!
What is the fix for this disease?
Thanks. So sad you had to fight for a diagnosis.
Oh my god these strae that just appeared out of nowhere without weight gain have been so embarrassing I have all the other symptoms of cushings now too
Have you been checked yet?
You’re still an attractive woman and work with what you’re given which is all anyone can hope for
I've had a lot of symptoms for a few years, but significantly worse over the last 3 months. I just developed visual snow syndrome last week. Did it resolve with your pituitary surgery or am I stuck with this forever??
Thanks for your videos. Very helpful!
Hi! It got a lot better, absolutely, but it never fully went away
Thank you. Please take a look at my Cushings journey, I just posted a video.
Pretty sure I don’t have this. I think I’ve probably got PCOS, though the doctor said I didn’t (I don’t think he did the necessary tests, and a previous doctor told me I had it so I thought I’d already been diagnosed). I’ve been looking into potential causes of some of my current health issues, and I was interested in this condition because I’ve had a fat lump on my back since high school. I was told it was probably just how my body distributes fat, and maybe that’s all it is in my case. Mine goes down if I lose weight, but gets bigger again when I gain weight. I didn’t realise this condition was caused by a brain tumour before seeing your videos.
My stretch marks on my belly look more pink, but that looks like other images of typical stretch marks I’ve seen. The stretch marks on my breasts are wider but white, like in your example of typical stretch marks.
I’m thinking I might have PCOS and an unrelated fatty lump on my back below my neck. I know it’s the result of a disease, but it is kind of nice in a weird way to see other young women with a hump like mine. Makes me feel less abnormal.
Sorry I really took a break for a while!! Hope everything is going well for you!
I've heard that the hump on the neck could be bc of insulin resistance caused by PCOS
im 15 and ive always had darker knees knuckles thighs neck elbows. my acne is bad and ive been stressed out for so long acne to me is normal. i remember being small and then around 10 i started blowing up. on my tenth birthday i had a false period and my first actual cycle didn't start until a year later on Christmas. Today I was using the restroom and spotted these scary worm looking black Mark's on my inner thigh.
I have had health things before like my tonsils were large so I got strep so many times in two months I had surgery. This and the weight and insomnia came from my severe sleep apnea which also caused bed wetting up until now. Finally stopped it but I'm so thirsty all the time so I'm relieved I can drink at night. Last year i was on cpap. I did use to need an inhaler when I was 10 or 11. My hair right in the top is like 2 inches while everything else grew out. But my hair doesn't grow past my shoulders. Always had hippo hump and losing weight is really difficult even when I'm really active and even been eating right this last year. I've taken inclines walks. I live in another country the last 9 months and lost 36lbs the whole time. My moods are terrible. But I've been depressed on and off. One person that was on the spectrum suggested I was on the spectrum. My ex said I was bipolar and I've done extensive research on being borderline. I definitely have moon face and my thighs are huge. I have uneven boobs which granted is normal but the level of unevenness shows that's its hormonal. I used to jave great eyesight as a kid but again around 9 or 10 my vision needed improvement and has gotten to the point my lenses get thick and I have to change them every six months. I have been told I'm prediabetic a couple of years ago and ive had a super busy life so I wonder how the weight doesn't go away.
I'm scared because I thought I was doing good losing weight the last two days I've been liberated from a toxic person but with them I was moderating my emotions. Setting boundaries in the family. But I plan to do a lot with my life and I dont want to worry about my health like I do now. Especially since I plan to have kids around 30 that's complications in itself.
I think you should look into finding an endocronologist near you and tell them everything you told me.
Hi came across this video for years ive been struggling with my body and what in feeling. for years doctors told me i had pcos. Last year i decided to go onna weight loss and wellness journey. I did everything cardio i was counting calories i got organic protein, strength training, and yoga. Drank lots of Water no sugar, organic vitamins ect. Unfortunately, i only lost like 18 pounds in one year. To make matters worse my symptoms didn't go away. All the symptoms that you mentioned i still have, whent to the women's clinic and the "specialist" rolled her eyes said its just pcos and I would have to just take birth control and learn to live with the symptoms like extreme fatigue, mood swings, low lebido, the severe stretch marks. I've gone to 3-4 different doctors and they still cant really answer my question of what really is the problem. I have a question if I go to another doctor what do you think I should ask to get the proper diagnosis. after the surgery do you have to take medicine for your rest of your life? I would like to have kids in the future. would that affect.
Thank you for your video, I have had 2 doctors decline my suggestion at Cushing Syndrome and won’t even entertain the idea of testing me….how do you overcome or get tested if doctors refuse. Also you talk fast for me, what is the word before Cushing, sickle? Thanks so much for your video.
Ah sorry, i have a habit of talking fast lol. Cyclical. and I would find the right doctor. You can also get saliva tests online!
I really wonder if you can have both , i have all PCOS like strong hair groth in face , acne but also Cushing problems like growing issues with my memory , brain fog , moon face, buffolo neck , strong depression. Issues with my period is persisting , but i did not have have the cushing issues before. I wonder if you can have both. But most remaktly i have a lot of this stripes all over my body , strechmarks and purpura mine starting to fade because i have them for so long
You can absolutely have both! It's actually pretty common
Hi! I have been noticing some symptoms for about 6 months now. I was gaining quite a bit of weight but not rapidly. I thought that I got stretch marks from the weight that I've gained but the stretch marks never faded like regular stretch marks do. I started to do a bit of research and I came across Cushing's disease. I have a feeling that I might have it. I feel like if I go to doctors they are going to think I'm crazy for connecting all of my symptoms. How did you get a doctor to officially diagnose you ? Did you already have a feeling that you have Cushing's or did the doctor figure it out? I know my body and I know that something is not right. I am just so unsure of how I should approach this.😕
Marilu van wyk hi!! watch through my videos more it talks a lot about getting the diagnosis and what you need. you need to test at proper times and find an endo who believes you. it’s a rough journey i’m not going to lie but it’s worth it to get treatment
I was just dismissed and referred to psych by the new Endo I was waiting to see since November last year. Literally left there sobbing. I’m saving up for Dr F. Just have no choice!! He better have an apprentice!!
I'm being checked for it or I'm pushing to be anyway I have all the symptoms. my question is is there a fix for it? my neck hump hurts me daily and over the past 2 years I've gained 70 pounds 😢 all in the mid section mostly I'm miserable
There is medication options, and surgery!
How long was it between your diagnosis & surgery? Going through the process of testing for cushings right now.
4 months
What does durger mean?
How long was the timeline from when you began experiencing so many symptoms that you clearly knew something is wrong to testing for it to diagnosis to surgery to recovery?
It took two years :/
@@Chronicallyyours_ your 1 of the lucky ones to get dignoased that fast ... Hope and prayers that your doing well now ?
Is there any way I can talk to you? I messed up my tests and I am in a really bad spot. I am on my second endo. My regular doctor caught it. I have a confirmed MRI.
Can you have a buffalo bump from overweight instead ?
Is the straie purple for all patients of all skin tones ,
It tends to be, yes! but there's no guarantee for any patient, symptoms do differ from person to person
Also have the excessive thirst, and excessive full body sweating, sweat smells like rotten BO.
Yeah I had all of that
My underarm smell smells like skunk.lol,but not,lol,lol.everything about me sweats and I never use to smell bad.jist chalked it up to my new large size. 😬🤪
Well... you are one beautiful woman.
Does the hair grow back?? I am right now being tested for Cushing's and am experiencing hair loss.
mine did!
hello Noura, I want to ask what you did to recover your hair, thank you!
most of it got better on its own, but i did do hair masques and used argon oil
@@Chronicallyyours_ Thank you)))
Ugh, so frustrating.. I gained 40 pounds in two months, and then some after that as I felt like my body just broke down on me. I've just did the 24h urine test. I've been waiting over a year for an endo and the only reason they saw me is because of my subclinical hyperthyroidism. I've been tossed around to all sorts of doctors this year though, with all sorts of problems. I don't care what it is anymore, I just want an answer! But if it is this, I'm not presenting typically; I've always carried fat in my lower body. I'm more of an hourglass figure; all of my stretchmarks or striae are on my thighs and just starting on my hips. That said, they were originally SO DARK on my legs, but that was so many years ago... Like when I was 100 stinking pounds. Guess this will either be ruled out or figured out in a week's time at least.
Wishing you the best of luck! I know how frustrating it is!
I m not confirm my problem is cushing syndrome deases or not my bones it's big my face bone jawline and cheekbone zygoma wides and my head look small my face look baloon not fat it's bone look moon
I’d request a cortisol workup to start!!
Hey I have a couple questions ? Is there a way to message you ?
reach out to me on TikTok - have a video on it!
I have all the symptoms but I have big legs
You can still have Cushings with larger legs
Hi. I came across your video and thought I have symptoms of Cushing syndrome and I'm really panicking. May I know that when you get moon-face, Does it go away sometimes and you get it like permanently when you already have Cushing syndrome? Hope you reply soon please!
Mine used to go away and come back. It was very round in general though and post op I have a jaw line again!
all of the symptoms mentioned can be a result of borreliosis (plus other tick-born diseases)
Noura, did you ever have high insulin levels?
I did!
Are you already treated ? What kind of medication ?
i had surgery, then my tumor came back and im on ketoconozole right now
Is fatigue a symptom?
Yes!
My wife has this but no medically diagnosed. She would not even know it exists. I'm to scared to tell her that she may have it because she'll think I'm just having a go at her.
show her my content - see if she relates. approach from a place of love
I really think I have this, but I’m a nurse and I’m scared the doctor is just goi g to tell me I’m being a hypochondriac
Def ask for some testing!
Can you get pregnant while you have cushings?
Hi! You can - however it is much more difficult. Cushings affects hormones, and can stop periods, which can be very difficult. if you have cushings and are looking to get pregnant I'd make sure its okay with your endo first. Then, you can take medicine to have your period induced
Are you good now? I have all the symptoms and hoping they can help me 😢
I was, but unfortuntately I have a reoccurance
@@Chronicallyyours_ no … so what do you have to do now?
@@pouranszekely_kiraly4764 Another surgery :/
@@Chronicallyyours_ my igf1 is high but cortisol low do you know what this mean?
@@pouranszekely_kiraly4764 thats not enough info for me to help u :/ i would ask your doctor
Did you get the tumour removed?
I did, but i unfortunately have a second one now
What caused Cushing syndrome?
it can be caused by medication or a tumor
Sounds like a curse 😢
70 pounds in 2 months?!?! How is that even possible, what a terrible disease
Try carnivore diet.