Diagnosed with a Rare Disease: My Cushing's Story Part 2 - Diagnosis
2022 ж. 12 Қар.
8 978 Рет қаралды
Hello again!!
If you're new to this channel and you haven't heard of Cushing's before make sure you check out part 1 before watching this video!! Here's the link: • Diagnosed with a Rare ...
In this video, I'm going through the details of my diagnosis (which took 3 months!!) and talking you through everything that happened leading up to my surgery. My endocrinologist presented my case to the board because it was one of the fastest diagnoses he'd seen in his career, so I want to share everything I did on my end, for my fellow Cushies! I hope you enjoy this video and I can't wait to chat more next week (:
Thank you for watching and supporting this new journey on KZhead!
Love you all,
Alli
Follow me on Instagram: ThatsRightUpMyAlli
This video will be so helpful for someone going through this… I love how inspiring you are throughout this series
I am so glad I found this video. I'm in the early stages of trying to establish if I have Cushing's Disease after many years of struggles. Thank you
I’m so glad you enjoyed it and found it helpful! Best of luck with your diagnosis and health struggles 💗
@@ThatsRightUpMyAlli ❤
@@ThatsRightUpMyAlliditto. You know so so much more than the doctors that we have seen. The puzzle pieces keep falling into place. Even saw an endocrinologist, but he blew us off.
I just got the results of my dexamethasone suppression test today. I failed. My symptoms started 20 years ago....I am so mad. I have all the symptoms except the stretch marks. I was blown off by so many doctors. I was lactating when my kid was 3. The dexamethasone tablet cost $0.04. Totally ridiculous that a simple lab test could have found this 20 years ago. The endocrinologist I saw last week ordered the dex test. The only doctor that took the time to listen and piece this together.
I am sorry to hear that but I cannot help but telling you this is complete BS! this is happening in the US but not in other countries. I NEVER had to do dex suppression test, never it was even mentioned to me by my doctors. I never even had to do the saliva test, although I was firmly diagnosed by my endo. and got surgery on Jan 9. Everything in the industrialized countries are about money, bigpharma, etc. That's why I left and they saved my life here (costa rica) by not having me wait too long while the disease was progressing, putting me in the hands of doctors who CARED and listened to me, and getting me a date for surgery very fast.
I am in the process of trying to get diagnosed… previously diagnosed with PCOS but my REI (reproductive endocrinologist) just ordered the first few tests for cushings to see if I actually have that instead. We are trying to conceive (currently going through IVF) and this is a big ol’ roadblock in that process, as you can imagine. I just requested to follow you on insta ❤
thank you for sharing !
I had been really anxiety stricken for years, horrible insomnia, facial hair, acne, random mood swings & unexplained facial “puffiness”I spent years chasing behind symptoms. My doctor told me it was just “depression” I couldn’t get out of bed & I couldn’t even go to the gym. I slowly started to crumble and I remember studying for my surgical technology exam feeling so brain fogged I could hardly remember anything I was studying for the past two years. That’s when it really clicked for me. Somethings wrong. As expected… My symptoms got worse, peripheral vision issues, weak eyes on sunny days, horrible joint pain, horrible brain fog, tanned skin in the winter, slow wound healing, heavy breathing, hair coming out in clumps, high BP, high heart rate, acid reflux, tingle feelings in my limbs, lethargy, etc. Finally yesterday after praying & having to take leave from work my gynecologist called me with abnormal lab findings. She said that my prolactin is 3x higher than it should & that it meant something. (I knew my prayers were being answered). She told me the only cause for that would be…. *surprise* A pituitary adenoma. She’s re-testing me again & then ordering an MRI herself. Funny how doctors really don’t believe you if you don’t fit a text book case example no matter how you relay the information to them.
Yes yes yes! So happy for you that you’re being pointed in the right direction. I’m so hopeful for your diagnosis. Better days to come 💗
Hi.i have very very similiar symptoms and high prolactin and a cyst in my brain but not a adenoma (sorry for my english im from germany)..did u gain much weight so fastly too and sweating at night and during the day? How much is ur prolactin? I have 80
@@IxXSentinelaXxI I did gain about 30 pounds in about 3-4 months which is crazy and I did sweat a ton! They never checked my prolactin levels so I’m not sure if they ever got high
@@ThatsRightUpMyAlli so did you get your diagnosis?was is because of the cushing disease? Im so excited of my time at 31.1 with the endocrinologist. Im afraid if he doesnt listen to me. Sometimes i sweat in the nighttime.somemtimes at the day.sometimes i have so much pain during the night in my belly which is in my back too then.but both in the higher part of my back. Hair loss. Hair in my face and body like a man.im becoming crazy
@@IxXSentinelaXxI yes I was diagnosed with cushings and all my symptoms were because of cushings. It definitely sounds like cushings to me! I hope you get a diagnosis from your endocrinologist
Thank you for sharing, this is extremely helpful!
Of course, thank you so much for watching and I'm glad you found it helpful (:
Took me over 5 years of constant urine and midnight saliva tests… just diagnosed with cyclical Cushings and the pituary tumour was finally large enough to find on mri this time.
Thank you so much love you uplifted my whole mood for tonight I really hope and pray I get diagnosed with this because I know I have it I just really want the surgery to get this tumor out of my body that’s causing all of this ❤.
Wow! You are such a great storyteller, it’s so easy to follow along with you! I know this will help so many people! Amazing job Alli!! ❤
Thank you my love 🥹💗
Please make part 3. This is good.
Hi yes I definitely will be soon! It’s just been so busy with the holidays 😭
Hello thank you for the informative video. What type of vision changes and headaches were you experiencing?
It is very hard...I am learning this in Nursing School....thanks for sharing this experience
Of course! Thank you for watching!
Gosh..thank you so much! Iv searched high and low trying to figure out what’s wrong with me. My doctor completely dismissed me when I told him my symptoms. I have an appointment today with my gyno who I’m hoping will check my hormones (including cortisol) so I can move forward. I’m CONVINCED I have Cushings. I have a question for you..did you get bumps on the trunk of your body? I have all these weird bumps on my back and stomach. These symptoms are just so strange! It’s frustrating! Thank you for sharing this. You’ve given me so much resolve to keep going! I’m so glad your better!
What do these bumps look like?
I'm in the recovery process and it's really hard. I look forward to the third video!
Hi Lisa! Yes recovery is so hard, I’ll have the third video out soon. Thank you for watching 💗
Thanks
I think, listening to this, just saved my daughter, she’s going through the same thing, and we could not figure it out
Hi! First of all thanks for sharing your experience, it has been really helpful for me :D I wanted to ask you how did you cope with school (or work)? I’ve been struggling to do homework and all that stuff Greetings from Mexico!
Hi Ana thank you for watching! That summer I was diagnosed I was in one summer class for a month and that was really all I had going on. It was the beginning of Covid still so I wasn’t working, I had a relatively stress free summer other that what was going on with me health wise. It’s hard to imagine working or being in school full time with this disease considering when it was at its worst i hardly wanted to get out of bed or leave the house. But if I was in your position I would maybe take a lighter course load? Or maybe talk to your school about getting disability so you have some extra help when you’re not feeling good? I hope that helps!
@@ThatsRightUpMyAlli Today I talked to one of my teachers but she didn't take it too seriously 😅 let's hope I have more luck with my other teachers Thank you so much for replying!
Hi there thank you for this vid iv been ill for years but now for 7 months iv had very swollen eyelids every morning my eyes and so sore blurry vision headaches hair thinning sore muscles hard to do anything all what you said in vid one but I want to ask has ANYONE HAD SWOLLEN EYE LIDS ????
I'm just the opposite, I know I have an adrenal tumor but don't know if I have Cushings or not. I'm doing a timed blood test on Friday. And definitely having surgery to remove the tumor.
Hi! Thank you so much for your video. It’s so helpful for us. I have been diagnosed about a year and a half ago and it was such a release to know that it was not all in my head. I have been fat shamed so much until then. It might seem like a trivial question but did you lose weight ? And if so how long did it take? I had surgery and radiotherapy in August and I am still taking pills of cortisone, but I am a bit worried that I haven’t lost much weight yet. :( I know my health is what matters the most but yes just asking
Hi Christal! I'm so happy you have found this video helpful. I can completely relate to the relief of having an answer and wondering if the weight would come off. For me, I was able to be diagnosed and have my surgery pretty quickly so my weight gain wasn't anything crazy. But nonetheless, some fat still did come off but what I found more noticeable was that it redistributed throughout my body more normally. Instead of it all being in my face, lower stomach, and back, it was more evenly spread out and I looked more normal. It could be that because you're still taking the cortisone pills (which is totally fine) that you may still have too much cortisol in your body (because of the pills) which is making you still hold on to the weight. As you continue to lower your dosage and then stop the pills I think you could expect to lose more weight. And for your overall health prioritizing a healthy lifestyle that includes eating nutritious foods and physical activity will definitely aid in losing fat as well! I hope this answered your question!
starting my journey so, I wonder if I have it.... so so so many of the symptoms
I want to get my cortisol levels checked. Is there a specific blood test to ask for? Thank you for making these videos.
The blood test is a useless snapshot that doesn’t establish a cortisone trend. You need the 24 hour cortisone urine test, and the midnight salivary test to get a diagnosis.
Your story is so similar to my own. I’m desperate to find out what’s wrong- I don’t recognise myself. _Other_ people don’t recognise me. My entire face has changed. I’m on long term fludrocortisone- can that in any way impede testing for cushings? Thank you so much
I have been reading about cushings for two years and its believed to not be as rare,bit miss diagnosed. Florid cushings is more rare than cyclical cushings.
When you said you pushed for quick testing and appointments, what did that look like? We’re you just calling often to see about cancellations? Thank you.
Everything about Cushing's screams I have it! Yesterday a friend sent me an article about it and I remember at 22 years old, I had the buffalo hump. I lost my first baby to an ectopic pregnancy, my periods were very irregular, I have asthma, high blood pressure, diabetes, morbid obesity with thin arms and legs, stretch marks, acne, osteocytes, and I could go on and on. I weigh 286 and am fatigued all the time, depression, anxiety gosh I really can go on. This terrifies me. I'm 56 years old and this could have been fixed decades ago. I can be carrying around a tumor in my brain and I want it gone. Where do you live and what hospitals did you go to for treatment? I live in Western NY south of Rochester. I feel like I have found the cause of my weight issues and all the other problems and I feel almost validated that there really has been something wrong that can be treated. This gives me hope for a future with better health. This set of videos may just have saved my life. Thank you.😊😊😊
Alli, did you ever do a saliva cortisol test? Just curious. I brought up Cushing’s with my primary care physician because I just realized that I have been suffering with all of these symptoms for about 12 years. She ordered a saliva cortisol test and I’m waiting for the results. Hopefully, I can see an endocrinologist soon!
Hi!! Yes I did do a saliva test and it came back high. Hopefully you get answers soon! 💗
@@ThatsRightUpMyAlli thanks! Your videos are really informative. Take care!💕
I think i have cushings..the fatigue is worst ..i have gsined weight,have a moonfacs and have vision problems did ACTH or CA 125 come out high?
The symptoms sound like cushings! I don’t remember them testing my ACTH specifically so I’m not sure
I have a big question: how long did it take for you to recover your norrnal face? Not being able to recognize myself since way too long, having any administration looking at my passport and telling me it's not me, is (you know it) very hard...thank you
There isn't no closed captions for your videos
Please let me know when u get the third video posted
Hi! I should have known better than to try and start a channel right before the holidays, I’ll be starting back up soon (:
So interesting that the ENT surgeon this whole time I thought they cracked open your skull.
but how much out of the range were your cortisol levels?
My first blood test was in the 30 range I believe and then my urine test was 450 where as it’s normally around 50 or less
Do you remember the level of 24 hr urine results?
what was the recovery like there is nothing I can find from you on that
Hi so sorry the video is coming soon with in-depth coverage of my surgery, recovery, and life today!! Thank you for watching 😊
How are you doing? Please update about you i may have to do this
Hi so sorry the video is coming soon with in-depth coverage of my surgery, recovery, and life today!! Thank you for watching 😊
Are u a medical student/resident too ?
No I’m wearing my friends coat!