I am 45 years old I been living in secret zero energy zero social life want nothing bad sleep round face hump and kidney stones. last draw 67 lbs weight gaine😭😭😭thank You for this channel. I really appreciate you telling your story I know I have long way to go just starting to learn what to do. ❤️❤️❤️❤️thank You for this video!! Super helpful
THANKYOU! You are very appreciated! You are sharing your love& light to the world! We need you😀! Please keep sharing more videos regarding cushings! I’m 62- my cortisol was high! But I don’t have a doctor; only a PA! Please pray for my situation! I have all the cushings symptoms! I’m praying for everyone on this forum and all Cushies! May God bless us all!💙🙏🥰
@@ellenzimmerman1483 I’m like a totally new person :) I had the tumor removed on April 26, 2021 and I have my annual follow up with my endocrinologist next week. I’m finally sleeping, off blood pressure medicine, losing the extra weight, regrowing hair, having a more regular cycle, no longer shaking 100% of the time…. soooo yeah! It’s been lovely!
@@ashleywilkinson6138 hey Ash 😁 grreat to read this! Happy that you´ve recovered. Would you like to write? Would be happy to read from you 💌 all the best 💚
I had diagnosed cushing myself back in 2006, I was 30 yrs old. All the symptoms you have explain I had them all. The benign tumor was located into my pituitary , and had brain surgery through my nose called " transsphenoidal surgery ". After the surgery my energy level mostly low, I was tired all the time just because from my cortisol so high then when the tumor removed it was in contrary I don't produce enough cortisol, thats why I was so tired all the time. I was told and well that 90% chances for me not be able to have children, because I only have less than 20% left of my pituitary. Then a year after post surgery I got pregnant twice. Also after the surgery I developed diabetes insipidus and this is for the rest of my life. This is a very rare disease according to my endocrinologist. And I had hormones replace the therapy for 10 years, and I currently not rely on the steroid anymore. Be positive we can live a normal life and normal life span. Thanks for your video surely it will help some other people out there who may have the same condition like us. Cheers, and good day to you.
I had an appointment at the Mayo Clinic last week. I walked in to consult with my new doctor. She clinically diagnosed my Cushing’s Syndrome in 4 minutes. 4. She confirmed her diagnosis with the results of my of my tests she ran. Those results were back the next day by 2p.m. I’m so sorry for your hopelessness and the fear you felt. I experienced the exact run around in my own home town.
Wow. That is very unusual! My daughter has been dealing with symptoms for over a year and the process has been emotionally draining. So happy you got answers so quickly and hope you’re doing well!
YOU have been so thorough in telling your story and explaining Cushing's. I am currently being tested for Cushing's. I am actually scared that the tests will be negative, as I can't possibly imagine that the 12 classic symptoms of Cushing's that I have, could be from something else. My very best to you and your continued recovery. Thank you thank you thank you!!!!!!
I am in the same stage right now, when my endocrinologist does not find anything in my blood, but I have syptoms (she said it's every doctors headache, when you see an image, symptoms, but you cannot find it where it's coming from). She looked at my brain's mri, but is not sure if she sees a potential hypophysis' changes (early stage) or not...now waiting for radiologist to check it again....scared a bit :/
@@becominghumanagain3538 last answer 5 yeears ago 😲 Please tell me your active here?Glad that you are healed ☺💝!Happy that you´ve done this video.Would be so glad to read from you! I´m here in germany,so cool that you are born in germany!One thing even if you don´t answer..make sure to do regularly MRIs from the pituatray and Bloodtest of your cortisol level. Hop to read from you💌.All the best 🍀✨💖
I'm a 22 year old female with absent periods and unexplained weight gain every sign of cushings. A rounded face I do have a pituitary tumor, but I'm still waiting on the salavia test
Omg girl, are telling my story or yours. Lol. I had cushnge also. I had all of the symptoms . But I reallly freaked out when my period stopped and my hair fell out. I wouldn't wish this horrible disease on anyone. I had 3 pitutary surgerys. But it really broke my heart when I found out dogs and cats can have Cushing's.♥️ Ps. I'm from Austria Hungary......
Currently in the process of trying to get diagnosed... my last period was almost nonexistent and my hair has been falling out recently. I've had almost all the other symptoms for almost two years now.
Hello! I wish you the very best, and a full recovery! 3 pituitary surgeries is extremely hard on the body, hats off to you for your strength and persistence! 💗💗
Thank you for sharing! I visited my psychiatrist today, and I wore a low cut shirt, and she saw the hump on the back of my neck (which I’ve always had and always been self-conscious about). So she ended up telling me about cushing’s, and reading me the symptoms. Almost all of them seemed consistent with me. I have hypothyroidism, so I have an endocrinologist already, but nothing has ever been said about it. She said she’s fairly certain that I have it, so I’m waiting for my next endo appointment. Fingers crossed 🤞🏻
Hey there did you get a diagnosis for cushings? I too have hypothyroidism, I am male and it is hard enough to get diagnosed since these disorders are mostly seen in females. I am afraid I have crushing since I am gaining weight despite having control of my hypothyroidism.
how is it now? i have hypothyroidism too and they always say oh it's your thyroid. i have all the symptoms but i'm losing weight not everyone gains weight with it though
Omg, I have hashimotos and hypothyroidism but I think I might have cushings. I have dealt with the buffalo hump and round face for years. I thought it was just because I was fat and had scoliosis!
Hi! I just realized I haven’t given any update. It turns out, thankfully I don’t have Cushings like my NP was concerned about. I still have hypothyroidism, but my endocrinologist said he thought it was unlikely I would have Cushings, and thankfully he was right. However, I did get my levothyroxine dose adjusted and I’m doing much better!
Since having met you and spoken with you, and now having seen this video, I realize what an incredibly strong and beautiful and tough life force you are.. I’m blessed to be able to call you my friend.
Thank you for posting about your experience with Cushing’s. Your video is the first time I’ve heard of a connection between elevated WBCs and Cushing’s. I’ve been quite symptomatic for many years but never received a diagnosis. I think the assumed rarity of Cushing’s makes doctors hesitant to diagnose. Meanwhile, here I sit, getting older, fatter, weaker, and losing out on life. Hope your recovery is going well and I wish you the best.
I have all the symptoms, going on a decade. Was diagnosed with pcos and fibromyalgia. Saw an endocrinology specialist 2 weeks ago. The junior doctor that took my history, the first thing he asked is if I ever heard of cushings. When the senior doctor came he was saying anxiety and depression is my problem. When he examined me he ordered tests to rule out cushings but told me how unlikely it was. Basically told me they are just doing due dillagence but it's so rare he's sure I don't have it and not to worry. After a barrage of tests (not just for cushings) I'm waiting for the results but from the reading I've done, i am convinced I do have cushings and can see why it was the young doctor's first thought.
I was diagnosed with Cushings but I don’t have the weight gain or the lump on the back of the neck. I do have super high cortisol/adrenaline, hyper-vigilance, psychiatric issues, constant sweating (but my left under arm and hand don’t sweat anymore), the frequent urination, and loss of appetite. There are many other symptoms, but I feel like I’m presenting differently than what is clinically expected in terms of symptoms. And my acth appeared to be normal. This disease is wrecking my life and brain function. I don’t have lupus, but I do get pericarditis and chest inflammation. They never figured out why, though.
I have also sadly had to self diagnose after 15 years. So messed up! I’ve suffered a massive cardiac aneurysm, one small aneurysm and fistula in 2016. Even then they didn’t get it right, where it came from. I’m so disgusted with these Drs and Insurance Companies. So glad you’re okay now!
I'm literally watching this as i'm taking my Hydrocortisone tablet. Thank you for sharing your experience...I could really relate even though i'm a guy so somethings are different. I got cushing's when I was 18 in my last year of highschool..I'M 21 now..I was the sporty type, I gained insane weight in a short period.. and got all of the symptoms you mentioned and more. I had my surger on October 2018 although I was diagnosed in 2017 but you know...ALL THE TESTS, ones that you mentioned and ones that you didn't probably because you didn't have to like I did. The big difference is that I had to remove both my adrenal glands because they couldn't really find any tumor. I'm now few months past operation i lost alot of weight and i feel much better but still recovering. Thank you, I was very happy to watch your video and I gotta say YOU LOOK GREAT NOW!
@@diamondkisses26 diabetes, hypertension, hypokalemia, insane weight gain, hair loss, my face became so big that i couldn't open my eyes...at some point my body became so weak that I lost the ability to walk . Depression ofc and ...i was also taken to the icu several times because of severe hypokalemia
I'm sorry you went through all of that. Why did they remove your adrenal glands? I thought Cushings was a tumor in the pituitary gland. I'm 54 and just starting this journey to figure out what's wrong with me. My cortisol was a little elevated at 23 about 2 years ago (after I asked my GP to test it because I'd gained 100 pounds and never changed my diet) so he said I may have Cushings and to see an endocrinologist but covid hit and I wasn't budging. In March I went back to see my gp and my new cortisol test came back low. I'm now 2 months into seeing an endocrinologist and finally getting a referral for an MRI and CT scan. Tons of bloodwork the past two months that doesn't add up and I'm so frustrated. 🥺
@@curiousc9259 they removed it because they spent 2 years trying to find a tumor but couldn’t. They used various procedures and still no sign of any tumor. My health condition kept getting worse because high sugar levels required more insulin and apparently more insulin means less potassium which is really dangerous. So, they had no option but to save my life by removing them..
I’m 23 and I’ve been fighting my body since I was 10 years old. I played sports, dieted, starved myself, and nothing has worked. For the past three years my body has been falling apart but my old gp would just tell me obesity causes all kinds of problems and I needed to diet and exercise. I finally found a new doc who sent me to endo when gyno found single cyst on ovary. Just took 1st blood test taking steroid one in a few days. I’m terrified but at the same time I wasn’t crazy
I've suffered severe stress for ten years. I've been getting horrific symptoms and I have a very painful hump on my neck. I also have ballooned in weight and I have purple stretch marks . I always had blue on my legs but I don't think I've had the hair or the blotchiness . I have a nasty swelling on my lumber Aswell and walking is so painful. I'm tired I'm so emotional over everything and I have had weird skin tags and rashes and my cheeks are red. I've messaged my gp that I'd like to begin investigated for cushings . I also get tinnitus dizzy and hot and cold.
I came across your video and I am so appreciative of how you shared your story. You did so with grace, clarity, and genuine concern to inform others for their benefit. Your story has given me hope and strength in moving forward with the diagnosis and treatment to come. - You are beautiful in all ways and I wish you the best in health and happiness.
Thank you for this video! I am a week post op pit surgery and feeling a lot better, a little odd and super exhausted. But blessed to be weening off my bp medication!!
I'm watching you explain all that you had to go thru and your symptoms to get your diagnosis and I'm crying cause no one will take me seriously and my symptoms are not as extreme as yours were but alot are similar. My primary just won't take me serious and I don't know where to go from here
Thank you for sharing your story. I am going through Cushing's now as well and am having a MRI tomorrow morning to check my Pituitary gland. Prior test (a lot) are now pointing to this as possible cause. I do also have a nodule on both my left and right Adrenal glands but test still came back pointing to Pituitary gland. I have same symptoms as you described as well. I am 53 in past thought some was because menopause but it's not. Taking years and a year with Endocrine to finally say yes you have Cushing's. Now I think we are finally in the final stretch to finalize and move forward. It was hard so listening to other stories gives me hope. Thank you again and God Bless.
Thank you for this video. I'm a year post op for an adrenal tumor causing Cushing's and actually producing testosterone as well. A lot of symptoms you had, I had as well. I hope you have healed well, since post op is tiresome and painful.
Thank you so much for this video. I’m only 16 going through most of the same symptoms as you and a few extra. This was very helpful. Thank you very much ☺️☺️
Becoming Human Again I haven’t been diagnosed yet. Hopefully I’ll be diagnosed correctly with whatever is wrong. :D looking forward to seeing more of your Journey.
I am so amazed by your story and appreciate all the helpful information you’ve given out. But I’m sad that you haven’t posted anything in a while. I really hope that you’re doing well and that everything is okay with you 🙏🏻
OMG Girl, I can soooo relate to so much of what you are saying! So sorry for your exhaustive medical journey - but so happy everything is mostly restored for you! My surgery is scheduled for Feb 28th - honestly, I feel us Cushies...our symptoms could have likely been picked up on ....waaaay earlier and our suffering does not need to be extended so...so I for one am also going to be an advocate for further education and such on this....NOT just for lay ppl...but ALSO for the entire medical community...b/c clearly...by the time ppl get to your point...and my point...our symptoms should have been picked up onto!! Thanks so much for this share :* . Keep staying strong. I pretty much could identify with your every symptom btw!
I am /have having all of these tests now and feeling fortunate that a night doctor was alarmed by my high blood pressure. I’m 47 and everything you describe is how I feel. Thank you for this video. With love from Oz xxxxxxx
IM 47 too.My endocrinologist didnt even mention my blood pressure at our first visit that the nurse took.It was 170/110.Did a few tests and they came back normal except one and he said, let's check you in a few months.🙄 Also I have every symptom except for easy bruising
What a great story. Would you consider doing another follow-up so we can see your progress now, over a year later? I'm very curious as to what kind of progress to expect post-surgery.
Thanks for your testimony. I am exploring and researching because I have some Cushing’s symptoms. You speak very well and you’re so pretty. You look like Brie Larson. God Bless.
My son is 12 and he started gaining excessive weight about 3 years ago even though he does not eat much. I asked several doctors about it and they kept brushing it off saying he just needs to eat healthier and be active. He’s very active and even when I changed his diet nothing changed. He continued to gain weight. I just noticed the the stretch marks on his thighs and it looks like he may have the bump on his back. I have to make sure he gets tested ASAP. Thank you for your video!
Thank you for making this video, gorgeous ❤ There's not nearly enough content from cushies out there and seeing this really helps. I've suspected I may have cushings for years now but thought I was just being a hypochondriac, so I didn't say anything about it. Well, my symptoms have progressed and I have an endocrinologist appointment in 2 1/2 weeks. I can't wait to figure this all out!
Köszönöm Kálmánka! Mostmár túl vagyok a nehezén! Amikor forgattunk, még olyan beteg voltam mint a kutya, néha látszik ahogy kapkodom a levegőt. Mostanság sokkal jobban vagyok, és majdcsak ezután kezdődik a FUNNN :)
Thank you so much for sharing your story. I just had 2 of the 3 tests done and I'm most likely Cushing's. I'm scared right now but seeing what you went though has given me hope to feel better. Were you on steroids post surgery and how long were you on them if so?
Thank you for sharing your story! I’m currently going through the diagnostic process. I have high results but still an unknown source. I think my dr is leaning towards pituitary. You’re one of very few I have heard say they developed a tan. I’ve been noticing I’m getting tan and am super nervous about it because I read all these medical journal cases where that happens in ectopic cases 😱 your video gives me hope, thanks!
I was tested for rheumatoid arthritis, auto immune liver disease, celiac, lupus, etc. Finally they told me I just have migraine, obesity and IBS. Now they found a mass on my adrenal and higher than normal cortisol. Ding ding ding. I guess I have an answer.
This disease is not rare at all as often claimed, but strongly under-diagnosed. The epigenetic cause is - leaving of our naturally wild environment, dulling senses, which are no longer necessary for the daily struggle for survival and certainly also the disruption of the natural circadian rhythm. Initiation can be triggered by a stressful experience, alcohol, drugs, trauma... or it can be genetically determined, which is also my case.
The bone marrow is taken from a pelvic bone. I had it done and it didn’t hurt at all! Poor girl. She had a bad technician or not enough numbing medicine.
Has anyone ever read anything on a link between ibuprofen and cushings. There was a study that showed a correlation between ibuprofen and cushings. I was trying to research the cause of cushings because my 13 year old has the hump and most of the symptoms. She did blood work today which we will get results for Friday. My daughter has never been vaccinated. Her older brother was vaccine injured by a hep b vaccine. So the only thing she has ever taken is ibuprofen. I’m wondering if this could be the culprit because although they say it’s rare it actually seems common among a lot of people.
Thank you for this video. I’m in nursing school and I’ve been told all my adult life that I have pcos even though they’ve never found a cyst. They said the cysts can come and go and that maybe they just weren’t there when they looked. After a lot of research I think cushings is the diagnosis I need to be going after. I’d love to see a video about how your symptoms are now if the weight came off quick and the hirsutism. Hirsutism is my main symptom that I’ve had my whole life since I entered puberty. Hope all is well ❤️
Oh and also I am 1/2 Hungarian I’m curious if this might be a genetic condition. I don’t know if there’s been much research on that but my mom also has brain tumors so the likelihood I have them too is high.
Hi from England and thanks for the video, I don't know if you still get these comments as your video was 2018? Anyhow firstly I would like to say that you look pretty and certainly your skin looks really good in the video I believe that I may have the early symptoms of Cushing's but at first I dismissed the idea because I do not have all of your symptoms for example I didn't put on a lot of weight but I thought to myself I'm a man so perhaps the symptoms are slightly different for a guy or with me it's not that advanced at the moment, also I have hypothyroidism and that could change things, I do get brain fog and I think I get ADHT, I get bad headaches and terrible dehydration but as soon as I drink anything I pea it straight back out! I have terrible stress and anxiety for no real reason and I have really bad fatigue like someone plugged into me and drained all my energy away, my brain is slow and I can't remember simple things or do basic math when usually I'm pretty good at those things, anyhow you have inspired me to at least go get a scan and see whats going on with me so thanks again it was an interesting video.
@@roblaa3198 I went to see a top specialist Endocrinologist Kings Hospital London, they did lots of physical tests but based on those tests and asking me lots of questions they concluded that I did not have Cushings and they felt that a test was not necessary, the problem is I do have Hypothyroidism, I also have Autoimmune disease, adrenal fatigue and lately I'm getting really bad depression, many of the symptoms for these illnesses are very similar to Cushings so it is very difficult for them to separate it all, I have found that the health service in the UK are not really interested in people with my specific illness and this has been going on for thirty five years and unfortunately ruined my life, I'm sure there are many people out there who have similar illness and can relate, at the moment I'm doing a juice fast and I totally recommend it, also I'm making my own kefir, they say to heal through the gut so I'm giving this a try, at the moment I'm beginning to feel much improved but along way from being healthy or cured.
Thank you for making this video, I learned so much. I really appreciate the information. Also I thought you said allergic to Poland was common at first, had me grinning.
Thank you for sharing this. I just got blood work back and I’m seeing a lot of symptoms so I’m wondering if that’s what’s been going on with me for years. I’m 41 now and had a very stressful childhood but also not sure about the pituitary. Did you have a lot of headaches?
can you have normal cortisol level and still haeve symptoms like hump between shoulder, hirsutism, abnormal periods and I testted for PCOS but its negative so i dont know what is going through my body only my testestron level has increased a bit and progestrone has been low and it so frustrating to not know whats happening to my body. My doctor said its just harmonal imbalance nothing to worry it can be managed by diet and exercise so idk if the doctor has diagnosed me correctly or not.
Hi How are you ? Thanks for sharing this in my case is a little different since I am a transgender female who has diagnosed with pituitary tumor 4 years ago tho my cortisol is completely normal . But I have noticed through out the years I was feeling not too excited on things I dont understand my body . And now I have noticed my body change a little bit specially on my legs area they become bigger , I have lost significant amount of hair my hair gets really oily , my skin is just always flaky I just dont understand my body im not sure if I have this syndrome because I look completely fine outside but I dont feel the same anymore through out these days.
Im in the process of going through tests at the moment done the pee tests and blood tests get results 18th december cant wait to find out and get it sorted love to all who suffer with this its very challenging x
Sad to to not see more videos. :( I hope everything has been going well for you. An update video would be great!
I am 45 years old I been living in secret zero energy zero social life want nothing bad sleep round face hump and kidney stones. last draw 67 lbs weight gaine😭😭😭thank You for this channel. I really appreciate you telling your story I know I have long way to go just starting to learn what to do. ❤️❤️❤️❤️thank You for this video!! Super helpful
THANKYOU! You are very appreciated!
You are sharing your love& light to the world!
We need you😀! Please keep sharing more videos regarding cushings!
I’m 62- my cortisol was high! But I don’t have a doctor; only a PA!
Please pray for my situation! I have all the cushings symptoms!
I’m praying for everyone on this forum and all Cushies!
May God bless us all!💙🙏🥰
I have my surgery on Monday the 26th to remove my tumor.
Thank you so much for sharing your story! 💕
Ashley how are you doing?
@@ellenzimmerman1483 I’m like a totally new person :)
I had the tumor removed on April 26, 2021 and I have my annual follow up with my endocrinologist next week.
I’m finally sleeping, off blood pressure medicine, losing the extra weight, regrowing hair, having a more regular cycle, no longer shaking 100% of the time…. soooo yeah! It’s been lovely!
@@ashleywilkinson6138 Great to hear!
@@ashleywilkinson6138 hey Ash 😁 grreat to read this! Happy that you´ve recovered. Would you like to write? Would be happy to read from you 💌 all the best 💚
I had diagnosed cushing myself back in 2006, I was 30 yrs old. All the symptoms you have explain I had them all. The benign tumor was located into my pituitary , and had brain surgery through my nose called " transsphenoidal surgery ". After the surgery my energy level mostly low, I was tired all the time just because from my cortisol so high then when the tumor removed it was in contrary I don't produce enough cortisol, thats why I was so tired all the time. I was told and well that 90% chances for me not be able to have children, because I only have less than 20% left of my pituitary. Then a year after post surgery I got pregnant twice. Also after the surgery I developed diabetes insipidus and this is for the rest of my life. This is a very rare disease according to my endocrinologist. And I had hormones replace the therapy for 10 years, and I currently not rely on the steroid anymore. Be positive we can live a normal life and normal life span. Thanks for your video surely it will help some other people out there who may have the same condition like us. Cheers, and good day to you.
Crying as I watch this video. Just got my cortisol level results.
Praying for you
I had an appointment at the Mayo Clinic last week. I walked in to consult with my new doctor. She clinically diagnosed my Cushing’s Syndrome in 4 minutes. 4. She confirmed her diagnosis with the results of my of my tests she ran. Those results were back the next day by 2p.m.
I’m so sorry for your hopelessness and the fear you felt. I experienced the exact run around in my own home town.
Melissa, are you receiving surgery for this?
What was her name? The doc ay Mayo?
Wow. That is very unusual! My daughter has been dealing with symptoms for over a year and the process has been emotionally draining. So happy you got answers so quickly and hope you’re doing well!
You're story is such a mirror to mine and I'm trying hard to get a proper diagnosis for Cushings Syndrome not disease.
YOU have been so thorough in telling your story and explaining Cushing's. I am currently being tested for Cushing's. I am actually scared that the tests will be negative, as I can't possibly imagine that the 12 classic symptoms of Cushing's that I have, could be from something else. My very best to you and your continued recovery. Thank you thank you thank you!!!!!!
Did you get a diagnosis? Thanks
I am in the same stage right now, when my endocrinologist does not find anything in my blood, but I have syptoms (she said it's every doctors headache, when you see an image, symptoms, but you cannot find it where it's coming from). She looked at my brain's mri, but is not sure if she sees a potential hypophysis' changes (early stage) or not...now waiting for radiologist to check it again....scared a bit :/
Did you find out?
@@karolinatrepsyte9667 Hi Any Update?
I was JUST diagnosed with Cushings Disease. I really appreciate your video!
Thank you so much for sharing your experiences with Cushings. You are going to help so many people who are going through a similar journey!
Miranda Stewart thanks, it is a pleasure for me to spread the awareness:)
@@becominghumanagain3538 last answer 5 yeears ago 😲 Please tell me your active here?Glad that you are healed ☺💝!Happy that you´ve done this video.Would be so glad to read from you! I´m here in germany,so cool that you are born in germany!One thing even if you don´t answer..make sure to do regularly MRIs from the pituatray and Bloodtest of your cortisol level. Hop to read from you💌.All the best 🍀✨💖
I'm a 22 year old female with absent periods and unexplained weight gain every sign of cushings. A rounded face I do have a pituitary tumor, but I'm still waiting on the salavia test
Omg girl, are telling my story or yours. Lol. I had cushnge also. I had all of the symptoms . But I reallly freaked out when my period stopped and my hair fell out. I wouldn't wish this horrible disease on anyone. I had 3 pitutary surgerys. But it really broke my heart when I found out dogs and cats can have Cushing's.♥️ Ps. I'm from Austria Hungary......
Currently in the process of trying to get diagnosed... my last period was almost nonexistent and my hair has been falling out recently. I've had almost all the other symptoms for almost two years now.
Hello! I wish you the very best, and a full recovery! 3 pituitary surgeries is extremely hard on the body, hats off to you for your strength and persistence! 💗💗
You look so healthy. You are giving me hope. Right now life is an ongoing battle
Thank you for sharing! I visited my psychiatrist today, and I wore a low cut shirt, and she saw the hump on the back of my neck (which I’ve always had and always been self-conscious about). So she ended up telling me about cushing’s, and reading me the symptoms. Almost all of them seemed consistent with me. I have hypothyroidism, so I have an endocrinologist already, but nothing has ever been said about it. She said she’s fairly certain that I have it, so I’m waiting for my next endo appointment. Fingers crossed 🤞🏻
Molly Fahrlander and how is it now?
Hey there did you get a diagnosis for cushings? I too have hypothyroidism, I am male and it is hard enough to get diagnosed since these disorders are mostly seen in females. I am afraid I have crushing since I am gaining weight despite having control of my hypothyroidism.
how is it now? i have hypothyroidism too and they always say oh it's your thyroid. i have all the symptoms but i'm losing weight not everyone gains weight with it though
Omg, I have hashimotos and hypothyroidism but I think I might have cushings. I have dealt with the buffalo hump and round face for years. I thought it was just because I was fat and had scoliosis!
Hi! I just realized I haven’t given any update. It turns out, thankfully I don’t have Cushings like my NP was concerned about. I still have hypothyroidism, but my endocrinologist said he thought it was unlikely I would have Cushings, and thankfully he was right. However, I did get my levothyroxine dose adjusted and I’m doing much better!
Since having met you and spoken with you, and now having seen this video, I realize what an incredibly strong and beautiful and tough life force you are.. I’m blessed to be able to call you my friend.
great
Thank you for spreading Cushings awareness .🥰🥰🥰🙏🏻🙏🏻🙏🏻✝️✝️✝️
Thank-You for being so honest and open in your recovery and helping all those with Cushing's Disease. You look so beautiful!
I appreciate the kind words, thanks Dr. Al! I would love to ask you a few questions in a video interview soon, I hope you are up to it :)
Thank you for posting about your experience with Cushing’s. Your video is the first time I’ve heard of a connection between elevated WBCs and Cushing’s. I’ve been quite symptomatic for many years but never received a diagnosis. I think the assumed rarity of Cushing’s makes doctors hesitant to diagnose. Meanwhile, here I sit, getting older, fatter, weaker, and losing out on life.
Hope your recovery is going well and I wish you the best.
I have all the symptoms, going on a decade. Was diagnosed with pcos and fibromyalgia. Saw an endocrinology specialist 2 weeks ago. The junior doctor that took my history, the first thing he asked is if I ever heard of cushings. When the senior doctor came he was saying anxiety and depression is my problem. When he examined me he ordered tests to rule out cushings but told me how unlikely it was. Basically told me they are just doing due dillagence but it's so rare he's sure I don't have it and not to worry. After a barrage of tests (not just for cushings) I'm waiting for the results but from the reading I've done, i am convinced I do have cushings and can see why it was the young doctor's first thought.
I was diagnosed with Cushings but I don’t have the weight gain or the lump on the back of the neck. I do have super high cortisol/adrenaline, hyper-vigilance, psychiatric issues, constant sweating (but my left under arm and hand don’t sweat anymore), the frequent urination, and loss of appetite. There are many other symptoms, but I feel like I’m presenting differently than what is clinically expected in terms of symptoms. And my acth appeared to be normal. This disease is wrecking my life and brain function. I don’t have lupus, but I do get pericarditis and chest inflammation. They never figured out why, though.
Welp, they found a growth on my pit gland.
And starving bc of illness isn’t fun, either.
I have also sadly had to self diagnose after 15 years. So messed up! I’ve suffered a massive cardiac aneurysm, one small aneurysm and fistula in 2016. Even then they didn’t get it right, where it came from. I’m so disgusted with these Drs and Insurance Companies. So glad you’re okay now!
They told me I had PCOS since I was 18. I’m now 33 and only now being diagnosed and I nearly died in 2016. FML.
I'm a former cushie! 1 year post-TSA surgery and doing great (after a very challenging journey). Thank you for sharing this ❤️
Evan? How are you doing?
@@ellenzimmerman1483 I'm doing really well now, thanks. How are you?
I'm literally watching this as i'm taking my Hydrocortisone tablet.
Thank you for sharing your experience...I could really relate even though i'm a guy so somethings are different.
I got cushing's when I was 18 in my last year of highschool..I'M 21 now..I was the sporty type, I gained insane weight in a short period.. and got all of the symptoms you mentioned and more.
I had my surger on October 2018 although I was diagnosed in 2017 but you know...ALL THE TESTS, ones that you mentioned and ones that you didn't probably because you didn't have to like I did. The big difference is that I had to remove both my adrenal glands because they couldn't really find any tumor. I'm now few months past operation i lost alot of weight and i feel much better but still recovering.
Thank you, I was very happy to watch your video and I gotta say YOU LOOK GREAT NOW!
Adel Al Maweri what were your symptoms!?
@@diamondkisses26 diabetes, hypertension, hypokalemia, insane weight gain, hair loss, my face became so big that i couldn't open my eyes...at some point my body became so weak that I lost the ability to walk . Depression ofc and ...i was also taken to the icu several times because of severe hypokalemia
I'm sorry you went through all of that. Why did they remove your adrenal glands? I thought Cushings was a tumor in the pituitary gland. I'm 54 and just starting this journey to figure out what's wrong with me. My cortisol was a little elevated at 23 about 2 years ago (after I asked my GP to test it because I'd gained 100 pounds and never changed my diet) so he said I may have Cushings and to see an endocrinologist but covid hit and I wasn't budging. In March I went back to see my gp and my new cortisol test came back low. I'm now 2 months into seeing an endocrinologist and finally getting a referral for an MRI and CT scan. Tons of bloodwork the past two months that doesn't add up and I'm so frustrated. 🥺
@@curiousc9259 they removed it because they spent 2 years trying to find a tumor but couldn’t. They used various procedures and still no sign of any tumor. My health condition kept getting worse because high sugar levels required more insulin and apparently more insulin means less potassium which is really dangerous. So, they had no option but to save my life by removing them..
I’m 23 and I’ve been fighting my body since I was 10 years old. I played sports, dieted, starved myself, and nothing has worked. For the past three years my body has been falling apart but my old gp would just tell me obesity causes all kinds of problems and I needed to diet and exercise. I finally found a new doc who sent me to endo when gyno found single cyst on ovary. Just took 1st blood test taking steroid one in a few days. I’m terrified but at the same time I wasn’t crazy
Thank you for sharing your story. It’s comforting knowing I’m not the only one going through this. Can’t wait to see the next video!!
I've suffered severe stress for ten years. I've been getting horrific symptoms and I have a very painful hump on my neck. I also have ballooned in weight and I have purple stretch marks . I always had blue on my legs but I don't think I've had the hair or the blotchiness . I have a nasty swelling on my lumber Aswell and walking is so painful. I'm tired I'm so emotional over everything and I have had weird skin tags and rashes and my cheeks are red. I've messaged my gp that I'd like to begin investigated for cushings . I also get tinnitus dizzy and hot and cold.
Loved your video. I am currently dealing with Cushing's. We thought I was cured but I was not. So here we go again. It's an absolute nightmare.
Did the tumor come back in the pituatary gland 😞?How your doing now?
I came across your video and I am so appreciative of how you shared your story. You did so with grace, clarity, and genuine concern to inform others for their benefit. Your story has given me hope and strength in moving forward with the diagnosis and treatment to come. - You are beautiful in all ways and I wish you the best in health and happiness.
Thank you for this video! I am a week post op pit surgery and feeling a lot better, a little odd and super exhausted. But blessed to be weening off my bp medication!!
I'm watching you explain all that you had to go thru and your symptoms to get your diagnosis and I'm crying cause no one will take me seriously and my symptoms are not as extreme as yours were but alot are similar. My primary just won't take me serious and I don't know where to go from here
How are you doing now? I hope you found out what's going on.
Thank you for sharing your story. I am going through Cushing's now as well and am having a MRI tomorrow morning to check my Pituitary gland. Prior test (a lot) are now pointing to this as possible cause. I do also have a nodule on both my left and right Adrenal glands but test still came back pointing to Pituitary gland. I have same symptoms as you described as well. I am 53 in past thought some was because menopause but it's not. Taking years and a year with Endocrine to finally say yes you have Cushing's. Now I think we are finally in the final stretch to finalize and move forward. It was hard so listening to other stories gives me hope. Thank you again and God Bless.
Thank you for this video. I'm a year post op for an adrenal tumor causing Cushing's and actually producing testosterone as well. A lot of symptoms you had, I had as well. I hope you have healed well, since post op is tiresome and painful.
Thank you so much for this video. I’m only 16 going through most of the same symptoms as you and a few extra. This was very helpful. Thank you very much ☺️☺️
BIM72821 it is a great pleasure sweety! Let me know if you have any questions, I’ll answer it in my next video! What kind of Cishing’s do you have?
Becoming Human Again I haven’t been diagnosed yet. Hopefully I’ll be diagnosed correctly with whatever is wrong. :D looking forward to seeing more of your Journey.
Hey I’m the same age and having the same issues, did you ever figure out what the issue was for sure?
I am so amazed by your story and appreciate all the helpful information you’ve given out. But I’m sad that you haven’t posted anything in a while. I really hope that you’re doing well and that everything is okay with you 🙏🏻
OMG Girl, I can soooo relate to so much of what you are saying! So sorry for your exhaustive medical journey - but so happy everything is mostly restored for you! My surgery is scheduled for Feb 28th - honestly, I feel us Cushies...our symptoms could have likely been picked up on ....waaaay earlier and our suffering does not need to be extended so...so I for one am also going to be an advocate for further education and such on this....NOT just for lay ppl...but ALSO for the entire medical community...b/c clearly...by the time ppl get to your point...and my point...our symptoms should have been picked up onto!! Thanks so much for this share :* . Keep staying strong. I pretty much could identify with your every symptom btw!
you literally are getting smaller and smaller week by week! Thank you for sharing for so many!
I am /have having all of these tests now and feeling fortunate that a night doctor was alarmed by my high blood pressure. I’m 47 and everything you describe is how I feel. Thank you for this video. With love from Oz xxxxxxx
IM 47 too.My endocrinologist didnt even mention my blood pressure at our first visit that the nurse took.It was 170/110.Did a few tests and they came back normal except one and he said, let's check you in a few months.🙄
Also I have every symptom except for easy bruising
What a great story. Would you consider doing another follow-up so we can see your progress now, over a year later? I'm very curious as to what kind of progress to expect post-surgery.
I've had this b.s. for years not knowing why the f my weight went up. I eat clean work out and dropped few pounds not much. Waiting on surgery.
We are testing me these next weeks for Cushings. Thank you for this video
Thank you so much for sharing your experience! It’s comforting knowing that I’m not the only one going through this!!
Cushing’s is hard very happy you are getting better get well soon
Am so glad I found this video I have cushings and am getting my surgery on the 12 and it’s been kind of hard to find videos on RUclips about it
Isabella? How are you doing?
@@ellenzimmerman1483 hi am doing good!! Feeling way better
Did you have surgery?
Thanks for your testimony. I am exploring and researching because I have some Cushing’s symptoms. You speak very well and you’re so pretty. You look like Brie Larson. God Bless.
Did you figure out if it was Cushings?
Would love another update! I am currently in the process of getting tested.
My son is 12 and he started gaining excessive weight about 3 years ago even though he does not eat much. I asked several doctors about it and they kept brushing it off saying he just needs to eat healthier and be active. He’s very active and even when I changed his diet nothing changed. He continued to gain weight. I just noticed the the stretch marks on his thighs and it looks like he may have the bump on his back. I have to make sure he gets tested ASAP. Thank you for your video!
Any news??
Thank you for making this video, gorgeous ❤ There's not nearly enough content from cushies out there and seeing this really helps. I've suspected I may have cushings for years now but thought I was just being a hypochondriac, so I didn't say anything about it. Well, my symptoms have progressed and I have an endocrinologist appointment in 2 1/2 weeks. I can't wait to figure this all out!
Wow! We got the same surgery from the same Dr!!! Recovering still from Cushing unfortunately. I feel your pain! :/
Thank you, for sharing. I am going in the process of having my child test for cushing´s and I appreciate your testimony.
Valika Örülök hogy jól vagy kivánok gyors gyógyúlást ! Meghalgatni is nehéz volt nem hogy átmenni az egész torturán.
Köszönöm Kálmánka! Mostmár túl vagyok a nehezén! Amikor forgattunk, még olyan beteg voltam mint a kutya, néha látszik ahogy kapkodom a levegőt. Mostanság sokkal jobban vagyok, és majdcsak ezután kezdődik a FUNNN :)
Thank you so much for sharing your story. I just had 2 of the 3 tests done and I'm most likely Cushing's. I'm scared right now but seeing what you went though has given me hope to feel better. Were you on steroids post surgery and how long were you on them if so?
Beautiful story and beautiful soul! 🥰
thank you for sharing this video ... any updates on your recovery
You are brave and so positive.
Which help us a lot , as my sister diagnose with same disease.
Thank you for sharing your story! I’m currently going through the diagnostic process. I have high results but still an unknown source. I think my dr is leaning towards pituitary. You’re one of very few I have heard say they developed a tan. I’ve been noticing I’m getting tan and am super nervous about it because I read all these medical journal cases where that happens in ectopic cases 😱 your video gives me hope, thanks!
GDellagioia I wish you the very best! Please keep me posted on what the docs say.
What tests did you have to do and what did you end up having?
Thanks so much I have endocrinologist app to on 24th feb can’t wait
I was tested for rheumatoid arthritis, auto immune liver disease, celiac, lupus, etc. Finally they told me I just have migraine, obesity and IBS. Now they found a mass on my adrenal and higher than normal cortisol. Ding ding ding. I guess I have an answer.
Was your ESR levels always high?
This disease is not rare at all as often claimed, but strongly under-diagnosed. The epigenetic cause is - leaving of our naturally wild environment, dulling senses, which are no longer necessary for the daily struggle for survival and certainly also the disruption of the natural circadian rhythm. Initiation can be triggered by a stressful experience, alcohol, drugs, trauma... or it can be genetically determined, which is also my case.
The bone marrow is taken from a pelvic bone.
I had it done and it didn’t hurt at all! Poor girl. She had a bad technician or not enough numbing medicine.
Thank you so much for sharing your experience, this has been very insightful and informative!
God bless you all the way girl and thank you so much for sharing your story🙏❤️those gifts are just so beautiful 😍
💪💪💪Örülök, hogy jobban vagy! 👍Dr Bruce👍
Has anyone ever read anything on a link between ibuprofen and cushings. There was a study that showed a correlation between ibuprofen and cushings. I was trying to research the cause of cushings because my 13 year old has the hump and most of the symptoms. She did blood work today which we will get results for Friday. My daughter has never been vaccinated. Her older brother was vaccine injured by a hep b vaccine. So the only thing she has ever taken is ibuprofen. I’m wondering if this could be the culprit because although they say it’s rare it actually seems common among a lot of people.
Thank you for this video. I’m in nursing school and I’ve been told all my adult life that I have pcos even though they’ve never found a cyst. They said the cysts can come and go and that maybe they just weren’t there when they looked. After a lot of research I think cushings is the diagnosis I need to be going after. I’d love to see a video about how your symptoms are now if the weight came off quick and the hirsutism. Hirsutism is my main symptom that I’ve had my whole life since I entered puberty. Hope all is well ❤️
Oh and also I am 1/2 Hungarian I’m curious if this might be a genetic condition. I don’t know if there’s been much research on that but my mom also has brain tumors so the likelihood I have them too is high.
Hi just got diagnosed having surgery soon..would like to know about how u recovered n felt right after ..so happy for u that ur doing better..
Hi from England and thanks for the video, I don't know if you still get these comments as your video was 2018? Anyhow firstly I would like to say that you look pretty and certainly your skin looks really good in the video
I believe that I may have the early symptoms of Cushing's but at first I dismissed the idea because I do not have all of your symptoms for example I didn't put on a lot of weight but I thought to myself I'm a man so perhaps the symptoms are slightly different for a guy or with me it's not that advanced at the moment, also I have hypothyroidism and that could change things, I do get brain fog and I think I get ADHT, I get bad headaches and terrible dehydration but as soon as I drink anything I pea it straight back out! I have terrible stress and anxiety for no real reason and I have really bad fatigue like someone plugged into me and drained all my energy away, my brain is slow and I can't remember simple things or do basic math when usually I'm pretty good at those things, anyhow you have inspired me to at least go get a scan and see whats going on with me so thanks again it was an interesting video.
hi Rob I'm also rob and currently being tested for this too in the UK due to see endo july how are you?
@@roblaa3198 I went to see a top specialist Endocrinologist Kings Hospital London, they did lots of physical tests but based on those tests and asking me lots of questions they concluded that I did not have Cushings and they felt that a test was not necessary, the problem is I do have Hypothyroidism, I also have Autoimmune disease, adrenal fatigue and lately I'm getting really bad depression, many of the symptoms for these illnesses are very similar to Cushings so it is very difficult for them to separate it all,
I have found that the health service in the UK are not really interested in people with my specific illness and this has been going on for thirty five years and unfortunately ruined my life, I'm sure there are many people out there who have similar illness and can relate, at the moment I'm doing a juice fast and I totally recommend it, also I'm making my own kefir, they say to heal through the gut so I'm giving this a try, at the moment I'm beginning to feel much improved but along way from being healthy or cured.
How about a post op video of changes in symptoms and changes in the ups and downs.
Library Files it’s coming soon! I have a lot to say about that.
Thank you for making this video, I learned so much. I really appreciate the information. Also I thought you said allergic to Poland was common at first, had me grinning.
Nagy nagy ölelés Valika!!
Márta Cserna én is ölellek titeket sokszor! ❤️
Thank you for sharing this. I just got blood work back and I’m seeing a lot of symptoms so I’m wondering if that’s what’s been going on with me for years. I’m 41 now and had a very stressful childhood but also not sure about the pituitary. Did you have a lot of headaches?
Really useful video, thank you. I’m wondering how you’re getting on now? I hope you’ve fully recovered and are really well now!
i just got diagnosed with cushing syndrome
can you have normal cortisol level and still haeve symptoms like hump between shoulder, hirsutism, abnormal periods and I testted for PCOS but its negative so i dont know what is going through my body only my testestron level has increased a bit and progestrone has been low and it so frustrating to not know whats happening to my body. My doctor said its just harmonal imbalance nothing to worry it can be managed by diet and exercise so idk if the doctor has diagnosed me correctly or not.
Oh my... I just got an appointment to a hematologist
Hi How are you ? Thanks for sharing this in my case is a little different since I am a transgender female who has diagnosed with pituitary tumor 4 years ago tho my cortisol is completely normal . But I have noticed through out the years I was feeling not too excited on things I dont understand my body . And now I have noticed my body change a little bit specially on my legs area they become bigger , I have lost significant amount of hair my hair gets really oily , my skin is just always flaky I just dont understand my body im not sure if I have this syndrome because I look completely fine outside but I dont feel the same anymore through out these days.
Thanks for sharing! I'm going through the tests now. I want children and I'm 30 years old . With the surgery are able to have kids
Does hirsutism goes away witu cure ? And periods get regular?
How long would you say it took you recover after your surgery?
ronaki26 I would say a good 8 months until I felt like new again!
I was on Prednisone for about 4 months.
Did u find out u had it with the Head MRI?
Angelica Jaime yes, the endocrinologist sent me for a CT scan on the brain 🧠
Do women have fertility issues with this disease?
Yes since cushings generally causes increased cortisol which reduces sex hormones needed for pregnancy.
brownskingoodness gold yes they do. I just had my baby 2 weeks ago. As soon as the rumor was removed, I became fertile!
Dr. Al Levy
Do you remember what your ACTH level was?? Mine is 71.9 😕😔
How are you doing now?
How are you today?
Did you lose your pituitary gland are you in steroids I want to know because I'm on steroids and when do you feel normal being on this meds
I think you only have to go on steroids if you have your adrenal glands removed.
R u ok
AND The ones who can't afford treatment in the BIG GREAT USA Are Screwed to suffering in agony.
You had horrible doctors 😨 They were drawing your bone marrow, instead of simply checking cortisol levels 😲
They were testing her leukemia at that time
I think she’d passed away.
weweko kowe I am still alive lol
Praise God!!!
what? This women?
6:44
Im in the process of going through tests at the moment done the pee tests and blood tests get results 18th december cant wait to find out and get it sorted love to all who suffer with this its very challenging x
this video stressing me out it take too long to tell a story
You could just not watch it
Allergic to Poland??? Damn, you hate Polaks!!!! Damn you!!!! You hate Vince Vaughn!!!! 12:58