Medical Stories - Cushing's Disease: Alyssa's Story

[@eauneau]

A lot of doctors do not recognize the symptoms of Cushing’s and blame the patients. It is a very frustrating condition to get diagnosed. It took me 5 years to get a decent doctor who realized what was happening. By that time I had more than doubled in size, developed high blood pressure, heart disease, became borderline diabetic, and developed cancer. You have to be a fighter. You must have confidence that you know your body better than your doctor. Spirituality is a big part of the fight. Reduce stress. Eat whole, reduce carbs, increase proteins and leafy veggies. If doctors spent less time calling patients fat and more time recognizing the signs of this dangerous ailment, there would be so many more survivors and thrivers.

[@miss_8thwonder]

So Is the cushing syndrome is different from The Disease, which one you were battling from, does it goes away forever

[@MiLadyShayttv]

I’m having trouble with this. I’m in the state of Arizona and my symptoms started with a buffalo hump largely on my neck. Bruising a lot, stretch marks, weight gain while trying to lose weight, excessive hair growth on my chin, and I had a kidney stone so bad that I thought I was actually going to die. All I can say is that I had blood tests and the doctor thinks I’m fine and they are referring me to an endocrinologist. I don’t know what to do because my body feels so exhausted yet my heart beats as if there is constant adrenaline. Sweating too much at night, just so many things. I try to be strong and pray to Jesus but I’m exhausted and so depressed. Where do I go for such doctors to help treat me? Do you have recommendations? I’m so desperate.

[@Hannahleigh_]

@@MiLadyShayttv I’m going through the exact same thing. Ive had these symptoms since 2018 and nobody knows what to do with me. I’m so tired and done at this point. It’s agony

[@MiLadyShayttv]

@@Hannahleigh_ Have you also been to an endocrinologist? Have they hinted at doing an mri? I’m lost too…

[@minervagomez8182]

I agree 100%. I went for years to many doctors. Till one day after 3 days of fasting, God showed me the way. This Doctor did not called me fat or make me feel like alien and found out what took my life, my joy and hope. He found it with the help of God. It’s been many years and still in the fight, but at least I KNOW THE TRUTH. That, it wasn’t my fault.

[@Karen-fx8ek]

I just found out I may have cushings disease due to very high cortisol! I’m praying for all of us- everyone on this forum! Please don’t give up! You are all in my Prayers! Keep me in yours as well! Keep the faith!🌻🙏

[@debbiemerritt]

I just found your story and i think it’s going to be an inspiration for me. I’m struggling very badly with Cushings. I was diagnosed with Cushings about 3 years ago. My tumor was in my right adrenal gland. I had surgery a year after being diagnosed. I only got 2 months in remission before I hit a brick wall again. I now have a tumor in my left adrenal gland. My dr feels like surgery to remove it will cause more issues than trying medication to control it. My symptoms this time around have been horrible! We are in the process of trying to get me on another medication but it’s such a process. I add m feeling very low right now as I’m sure you can understand. It’s really taking a tole on my body. I’m having all the symptoms in a really bad way. It’s good to hear your story and it gives me great comfort in knowing there is hope. Thank you so much! Debbie

[@Moody_Incorporated]

With your cushings did you ever get hand tremors especially in the morning?

[@vessels99]

I am suffering with Cushings disease currently. It is a rough disease to deal with. Your story is very encouraging. Thank you for sharing it.

[@juliechase8625]

I live in Spokane also, and I was just diagnosed in the past few weeks with Cushing’s disease. I didn’t know what it was so I am grateful for your video. I am beginning the process now. There’s so much I don’t know. I never heard of it until I was diagnosed Glad to know that there’s Hope out there.

[@naturelovers6987]

Can you share your symptoms with me please 😊😊

[@melaniemarlowe4025]

I’m in north Idaho, what dr are you going to? Thanks!

[@saracook7807]

My story is almost identical. Athlete with 2 kids had a pituitary tumor removed. Cushing’s positive. Remission was 18 months. Got pregnant again. Gained 100lbs again over 5 years. I got my life back with mounjaro. I’ve been on korlym and other meds. On mounjaro I’ve lost 100 lbs, no ibs, no high blood pressure, etc all in 7 months.

[@shadyfranco8881]

Mathew 26:41 & Mark 13:48. So true ( "the spirit is willing but the flesh is weak").

[@nikkir5285]

Hi. I’ve been fighting Cushings Disease since 2016, I recently had re occurance of my tumor and my high cortisol and had a second surgery. My first time it took 7 years to figure out what was wrong. I gained over 100 pounds and was left with residual issues such as muscle and joint, as well as liver and damage from diabetes. This disease wrecks havoc on your entire body! I know many patients that have had to remove the addreneal glands after failed surgeries, thus creating a life long serious health condition. Thank you for sharing your story.

[@Grahamt978]

I’m a Cushings disease patient who now has Addisons disease due to bilateral adrenalectomy . Life has been challenging living with Addisons seems like I keep losing more and more of myself to this disease. I fight to live another day💕

[@terahappygirl8355]

Thank you for sharing your story. As a fellow cushie, it means so much.

[@WhitJohnson7]

I'm also in Spokane and I've had zero luck getting help. They say pcos and to deal but im now to the pt I have major Cognitive issues, inflammation, brain fog, having panic attacks, weight, muscle ache and bone loss so much more.

[@beatricealonzo3099]

A truly inspiring story following a truly amazing woman.

[@erikaalexa8979]

Thank you for sharing your story! My surgery is coming up!

[@ramonalisa2000]

Any update?

[@donnaeburgess]

So wonderful to see you thriving, Alyssa, and savoring the blessings of your beautiful family each day. Much love, Donna and George

[@gettingslim186]

I don't think this disease is that rare! We live in a high stressed world and its super hard to get diagnosed. First the Drs don't believe you, then the tests are not clear cut. Its soo frustrating!

[@stiffpeter1771]

My Doctor actually understood the mission and now we are on the road to recovery. Long time use of steroids and cortisone is its main trigger. I had to get Cortisone Shots every other day my last 6 years in the United States Army. For back injury issues. They were giving me large doses of it and pain medication as well. God Bless anybody going through this difficult disease.

[@Tilliemac]

Thank you for your video! Happy your doing do well now! I hope I have the right doctors to help me with all of this - it’s truly horrible!!!!

[@princessadora]

if only they'd take us seriously!. 20 plus years in and dying. heart swollen to twice the size nearly died in june. why isn't anyone setting up a humanitarian cushings clinic where all can go to?

[@fallingembers8430]

Does anyone know if Alyssa has published her poetry anywhere? I'm a young person who has also been diagnosed with Cushing's and also writes poetry to deal with the distress that comes with it. I love to support small creators, especially ones I can relate to. Anyone reading this who is also dealing with the condition, never stop fighting the good fight and getting the care you deserve! We all deserve to show our bodies and ourselves love ❤

[@mimi2boys]

I am just starting on the journey... My new doctor is actually sending me for tests even though he does not think it could be Cushing's because I am not diabetic. I have weight gain, hump, moon face, high blood pressure, stretch marks, insomnia, fatigue, anxiety that makes no sense... but I am not diabetic so it's not that. We will see... I am doing the dex suppression next week.

[@cvbrady16]

Hi there, thanks for sharing your story. what medication do you take please? My mum is currently considering a bilateral adrenalectomy to treat her cushings,which seems a little extreme… Thanks in advance. Elena

[@noelle4321]

I have been on Isturisa for Cushings Disease for about 3 years now after a failed pituitary surgery. It's like I don't have Cushings. Great medication for me. Worth looking into it. It's fairly new in the USA so you have to be approved.

[@WhitJohnson7]

I swear I have. How can you get answers. Been going in circles and I'm struggling so bad.

[@carmenmulholland8655]

I am the same as you I have been diagnosed but, they have done nothing to try and improve it after 5 years

[@pouranszekely_kiraly4764]

Hi there i have all the symptoms and this week seeing a proper doctor finally how did you loose weight after?

[@itskashkashi]

I think once your cortisol level normalises, symptoms can be reversed. If you're eating balanced and start being able to exercise , I imagine the weight will fall off. But also depends on how long you've gone untreated I think.

[@chickedee1085]

Lose*

[@WhitJohnson7]

Did you have manic episodes? Or hallucinations? Tremors? I just had thus happen 2 days ago and almost ended up at the er but I'm so discouraged with them saying they don't know just come back if I have this happen again. 😔

[@miss_8thwonder]

@@itskashkashi So Is the Cushing "syndrome" is different from The "Disease" does it goes away forever

[@miss_8thwonder]

@@itskashkashi I have Cushing syndrome, like I have been suffering from it since childhood, like I was unaware So will I be able to get treated or cure forever 🥺

[@teresiacross3872]

What happens with the tablet in the collection container? Does it stay in the container?

[@teeski693]

Yes

[@Subrando]

What about cortisol resistance

[@Breezy11harvard]

God bless her! Only the healing power of Jesus! Combined with any other "power", isn't his power at all, and, thus, is ineffective.

[@chickedee1085]

Frustrating having it all, the money, house, husband, then this comes along. It’s looks like there is a religious element here with the amount of kids. God gives us disease so fighting against this is wrong. Be thankful for what is given good and bad.

[@carmaela2689]

You are delusional. Please get help.

[@miss_8thwonder]

Wtf, how can we be okay with something which is a disease, not just everyone gets it on their childhood it has nothing with religion especially after knowing it a whole a lot of struggle over there, most suffer from it at the age of 31

[@marijanikoloska4822]

I need help, my grandmother also has cushing syndrome, we’ve run so many tests and all negative. Adrenal gland is okay. Does someone had the same problem, anyone. Help 🥲

[@ramonalisa2000]

Any updates?

[@zelahfines6535]

It can be from ectopic source- a tumour anywhere in the body. It can also be from a gene mutation I think

[@e.williams13]

How dou you it is Cushing's if the tests are normal 🤷

[@Melecha1611]

High levels of cortisol can be caused by external factors such as medication that contains corticosteroids