Cushings Journey: Update...Highly Requested

[@timiharris9221]

I have Cushing's too cause by tumor on my adrenal gland . I feel so sick and in pain all the time. So many symptoms. I am scheduled for surgery soon. Much success and a great recovery for you.

[@dreamhaven7875]

Nine years since I had Cushings Disease. Had a golf ball size brain tumor removed. Nothing like this was around back then. So glad people are sharing their experiences.

[@justmeb9079]

Update on your condition. Your tumor is large so were they able to get all of it? I have a 1 cm. tumor scheduled to have removed on the 21st.

[@dreamhaven7875]

JustMe&B They were able to get all of it. Unfortunately I lost all of my hormones and developed Panhypopituitarism. I hope you don't get it, but if you do there is a really good support group on Facebook.

[@itskashkashi]

They say its so rare, but I feel like it's underdiagnosed. Most doctors don't expect to ever encounter someone with cushings. Even when it was the first thing that my endocrinologist thought of when he saw me and took my history, he kept saying how unlikely it was and the tests were just to rule It out.

[@Nat524Ricci]

Going thru this now except I’m 33, was diagnosed w PCOS at 19 in 2007. Been Cushings the whole time. I pray it’s found but they sometimes have to do exploratory surgery to even find the micro adenomas. Let us know how ur doing!! I pray mines found in labs and MRI bc I suffered a massive cardiac right coronary artery fistula and TWO massive aneurysms in my heart. They were found incidentally at my 6m postpartum checkup in 2016 8m after I had my son. I was so lucky they found it and fixed it. I had no symptoms!! And now it’s been 4.5 years later. They told me it was congenital! I knew it wasn’t, I was an athlete like competition swimmer and diver til age 18. That’s ridiculous. You CAN conceive w cyclical Cushings! I did in a low cycle for myself. My cyclical pattern are years. I’m on a major high so I’m praying my labs come back High. Fingers crossed!! This disease morphs us, it’s SO hard!! Hope you are well. I sweat constantly nonstop and it’s super stinky like BO but always and my whole body even my scalp. My Drs have NEVER EVER EVER ONCE tested my cortisol OR ACTH until now when I demanded it. It fucking sucks. It’s nearly killed me but now that I know wtf Cushings is I am damn sure. My face and body and everything has changed and it’s hell. Praying for a cure!! Idc about the weight anymore. I just wanna live long enough to raise my son who is 5 💜💜💜💜 keeping you in prayers of course

[@Jesusisthebombdotcom]

I have cushings from all the steroids they've put me on for my allergic reactions. I feel the pain of the large stretch marks and the weight gain. I've gained 50 lbs keep your head up we can't help it!

[@XxBloodyWhiteRabbixX]

Love, love, love your positive attitude! I too have Cushing's disease, with a small tumor on my pituitary gland. I gained 130 lbs in less than 3 years despite eating fairly healthy and being active. I also have a lot of the same symptoms as you, but the best thing is to stay positive and knowing that doctors are trying to do their best at providing the care that we all need! I'm waiting for the sinus sampling since they think that will provide the best results in removing the tumor during surgery and ensuring that I won't have to go in for a second surgery. The disease may be a horrible and rare thing, but if we all just stay positive and look on the bright side knowing that there are ways to deal and manage it then we can all get through it! :)

[@neilaucamp2389]

Hi Hayley. How are you doing now. i was diagnosed with Cushings Syndrome in 2011. Had a golf ball sized tumor in my right adrenal gland. Had it surgically removed and lost about 50lb in a month. My diabetes, high cholesterol and high bp were gone within days and I have lived a pretty normal life since then. No medical issues at all almost 9 years later.

[@mjd716]

I wish you all the best in this journey you are on. Keeping the positive attitude like you are will make a huge difference and I applaud you for that and for your honesty and your bravery!

[@juliepye8627]

Hi Seen your link on my cushings link I have on Facebook I know what your going through too, I was finally diagnosed with Cushing disease too last January and since then my life has been a world wind of in and out of hospital visits. They said that I'd had it for over ten years and hasn't seen a case like me before, I had a very enlarged tumour on my piturity gland that had conclaved in its self which was wrapped around my optic nearves and arteries, they could not remove all as it was too dangerous that was last September then in the November I had my adrenal glands removed which were four and five time the normal size, since then I have lost three stones my appetite has also changed. I haven't even tried to loose it too, hoping to hit the gym again to help support my muscles. Like you I have too many symptom to say that since I was in my teens kept going back and forth to the doctors for. I've just had my mask made for my radiotherapy and at the end of the week I start my five week radiotherapy and start leading what you call a normal life again. I'm going to have to have regular MRI / ct scans and scrape out in the future and closely monitored The ops are not that bad, I was surprised in how quick I recovered, put I had a lot more aches and pain which I'm not full recovered from. Like you I sad I have had it for years and put up with it then so it's not stopping me now, I'm going to do things I wanted to do in my twenties which I got sidetracked and but on hold till by my angels from above knew when the time was right, for me to fulfil my dreams xx I have my good and bad days but I stay strong for my family and friends and for my dreams as I know I'll never be able to work in day nurseries agains. Xx

[@natureasintended]

How are you now?

[@carriefeder624]

Thank you for your experiences! I have been diagnosed with a pituitary tumor and now I'm going thru more testing to see if I have Cushing's.

[@misshaili]

I have been going to the doctor for almost two years now and in the last few months Cushing's came up as a possible answer to all my questions. I became knowledgeable about the disease and I believe I have Cushing's. Does Cushing's take a long time to diagnose? I don't like being in the dark when it comes to my health.

[@TheBlushinBrunette]

Love you, Hayley! You're right- stay positive. We don't have control over certain things. My brother had brain surgery about 13 years ago to remove something that could kill him and it was scary but we prayed a lot and it was a successful surgery. xXOo Carol

[@KaliSpiers]

Really happy I came across your channel! I will be getting my results on if I have cortisol overproduction next week. You have a positive attitude which I can relate too! I am trying to not let the ups and downs get to me and push through. Thank you for sharing! God Bless!

[@adrianaperez8524]

hi! i have cushing desease too i had my surgery on june last year i understand what you are going thruoght. It is not easy... i hope you get better soon, by the way it is nice from your husband to be with you. It is very important to have someone with you. Let me tell you something about my symptoms, as you mentioned I also had does moments where got angry without a reason then I will cry like crazy but as you said it was because of the hormonal changes other thing that happened to me is that I had seizures i don`t know if that is happening to you on top of that I had hallucinations panic attacks and many other symptoms. After I had my surgery things are changing gradually, I feel better no more panic attacks I haven`t have any seizure so far but I still take my medicine for the seizures. One thing I can tell you is follow your doctors` directions and don`t miss any appointment. once againg you look great!!!!

[@shell1549]

Adriana, which surgery did you have and where did you have your procedure done? I have an 11x11x12 pituitary tumor with cushings and I'm trying to decide where to have this procedure done. How was your recovery and how long after surgery?

[@frankeycastillo6985]

omg so weird, I had brain surgery for this exactly a day after you uploaded this. i had cushings for a while also and many other problems caused by my pituitary tumor (including really deep stretch marks on back and thighs) :( but now I'm better and I use 'Cicatricure' on my stretch marks and they're almost gone, i recommend trying it :)

[@shell1549]

which surgery did you have and where did you have your surgery? I'm trying to determine where to go for my surgery and wondered what your experience was?

[@frankeycastillo6985]

I went to UCSD Hospital in San Diego and I forgot what the surgery is called but it's when they go through your mouth and nose instead of having to open your head. My surgeon's name is Dr. Hoi-Sang U.

[@shell1549]

thank you so much for your response! Have you noticed that you are feeling better yet? If so what changes have you noticed? How did you figure out that you had this if you don't mind my asking?

[@niyahmansfield7331]

I have had brain surgery for the same thing but please don't wait to long because that tumor can effect your vision

[@moneypenny1267]

I’m waiting for blood test results coming back for cushings. Over two years I’ve gone from 63kg to 78. I’m a gym fanatic. I also had a hump on my back appear. I thought it was menopause but I can’t lose weight despite working out so hard every day it’s just static. I have hair loss too. We will see.

[@Ericaskye89]

Praying Hayley!!!

[@charasmarieplans5889]

my daughter is having her tumor remove on april 6th she lost awhole bunch of hair and she has those stripes on her arms will they go away how long were you in the hospital my daughter tumor is a size of a walnut well they remove all of it!!!

[@martak.7127]

this video is extremely helpful, thanks! I have a question, I've got some symptoms of Cushing's, but only a few. I don't have any stretch marks, high blood pressure, acne. Does it mean that I don't have this syndrome or it is possible that some of the symptoms don't appear? Can you tell me what lab tests should I do? I had a test with dexamethasone, or something like that. My cortisol level was very low, so that must mean that dexamethasone suppressed it. Should I still be afraid though the result of my test was negative? Or maybe everything is ok?

[@natureasintended]

It doesn't sound like Cushings. How are you now? x

[@brianseohio]

What would be considered a high fasting acth level? Mine was 53.

[@oSHOVVTIMEx]

hi again. i just suscribed to your channel.( Im Danny Miller from the otehr cushings video, that was my brothers account) Sorry to hear that its still not cured yet, but i cant believe how positive you are and happy and everything. My doctors have me on suicide watch instead of trying to focus on the things that are making me want to kill myself in the fiurst place, including the cushings symptoms which is a big contributor. I got a question, were kind of in a similar situation...

[@natureasintended]

I hope you're OK. x

[@oSHOVVTIMEx]

Whats the deal with the sinus sampling test? Are theyre really risk factors? I was supposed to have that done, still may be, hiopefully soon. Ive had mri's on both the ehad and adrenal area or whatever and they couldnt see nothing but my family doctor said liek you said there could be a small tumpour in the brain that wont show up. does this test for sure see if its there or not? I mean ive never taken steroids or anything, just logically thinking it has to be there. And good luck with everythin

[@oSHOVVTIMEx]

youre braver than most people

[@slimshadyyyyyyy8850]

Hi did you had surgery yet?

[@indicabarnett9116]

What? What do you mean you cant lose weight? The surgery dosent eliminate truncal obesity? What happens? You just stay big? Help!

[@rianarobinson896]

Indica Barnett I’ve seen people with it who the fat melts off once they have surgery so no the weight doesn’t stay for everyone