I think that Cushings is not as rare as they think it is; just rarely diagnosed!
@joannebrooks39535 жыл бұрын
100% this comment!
@girlsbasketballharvey23125 жыл бұрын
EXACTLY
@penguino95 жыл бұрын
It seriously is rare. There are studies done where the cutoff falselyor/can positively diagnose cushing's disease. I've done all of the research as I humanly can.
@roblaa31985 жыл бұрын
yup
@EM-ps4kr5 жыл бұрын
I agree. The testing is complex. Drs don’t know about it unless it’s a personal interest. None that I know of actually join patient groups to learn real symptoms. I try to teach my main dr & she argues with actual patient testimonies and I’m thinking, (A) she’s never had the disease or known anyone with it, and (B) she’s never studied it in person with a real patient or in text books or research papers.
@jacquelinepaulino1263 Жыл бұрын
One of the best videos I’ve seen…it gives you lots of powerful information.👍🏻👍🏻👍🏻
@sanadbenali69937 жыл бұрын
5th year medical student here very thankful you made this it helps to understand a very hard to diagnose disease and rare hope you are well
@thestraycat9075 жыл бұрын
Gained 100 pounds in three years, recently more in the stomach, and i eat pretty healthy. Insomnia, anxiety, frequent urination, excessive sweating, hair growth on face and chest, swollen optic nerves etc. However, my eye doctor mentioned my swollen optic nerves could be a symptom of petuitary gland tumor. My regular doctor doesnt know about this but she has mentioned i may have an adrenal gland tumor. I am going in Friday with a list of all my symptoms and will be pushing for a diagnosis of something
@TragicallyDelicious2 жыл бұрын
Ask for fasting labs and for a dexamethasone rx to suppress cortisol. If you have cortisol after fasting in the labs, its conformation for cushings
@danileikam3 жыл бұрын
Thank you so much. I’m watching in 2021 I’ve watched all of your videos youre one of the first people brave enough to share their journeys! Thanks again
@ricebowl68643 жыл бұрын
I went to her channel and how did I not see any of her cushings videos?This one came up after watching another persons videos
@msheidiyodel5 жыл бұрын
I’ve been really sick and hurt all over, my legs joints and so on. So I went to see a endo and her first test was cortisol test so hopefully my dr is on the right path!
@erikm31885 жыл бұрын
Adrenal insufficiency?
@yvettekopp24506 жыл бұрын
Thank you. My cardiologist suggested that I may have cushings. I have accepted the overwhelming fatigue. My husband was with me and we laughed saying that I should weigh nothing because I don't eat. My cardiologist looked at my back and photos of my b/p and heart rates (30 to 180). It DOES matter that a doctor listens. I told him that I take Xanax at night to "tap" down my heart. I sleep about 4 hours a night (4am to 8am).I already know that I have hyperadrenergic POTS but it never dawned on me that I may have cushings. I weigh about 150 but my normal weight is 115. I honestly can't eat because my GI tract has shut down. My GI doctor has stated that she may take part of my large colon and I told her absolutely not. Thanks for listening. One day at a time. One minute at a time.
@PomegranateStaindGrn5 жыл бұрын
How are you doing now? Have you gotten the answers you need?
@user-wr3gy7el2h2 жыл бұрын
Thank you for your channel!!!
@DesignMoxe5 жыл бұрын
I hope your health is doing better. My daughter was diagnosed with PCOS, but I truly wonder if she has Cushing's. I think she should be screened for this.
@tth7159 жыл бұрын
Thanks so much for your videos. They've been very helpful and informative...
@InternationalSwapNStuff9 жыл бұрын
Thank you. Glad it helped
@moniquestas83429 жыл бұрын
Thanks so much for the info. I have only been aware of this disease for about 3 months now. Went to the doctor was feeling really crappy and they did a blood test and 24 hour urine and it came back normal. Thing is I think I have had this for decades. I was diagnosed with PCOS in my early twentys. Many cushings symptoms back then and more of the symptoms have been showing up over the years with they latest being high blood pressure and Diabetes and ultra weak and constant pain in my back and legs. thanks for the advise about testing when you are feeling good we will see if that makes a difference in the results.
@InternationalSwapNStuff9 жыл бұрын
I hope you got the results u wanted
@charasmarieplans58898 жыл бұрын
+Monique Stas please go in and get a mri my daughter who is 20 they found a tumor and she is having surgery on april 6th her tumur is a size of a walnut!!!please keep us posted
@gigilovekey45855 жыл бұрын
I am at the end of my rope. Thank you.
@freespeech84066 жыл бұрын
I think after my 3.5yr known illness and probably 18yrs total ive just found my answer hon altho Ive been hopeful before sighs. Been to an endocrinologist $375 and he threw me back out of his rooms after just palping my tummy and doing my blood pressure xoxo
@fereshtehtabib31087 жыл бұрын
Thank you very much for sharing your experience. The video is very helpful. I wish you the best.
@TheM3agan6 жыл бұрын
I need help, Rae! I started getting the buffalo hump 10 years ago. My symptoms are so lined up with cushings, it's insane. My great-aunt had cushings, as well. My husband is military and I'm trying to get diagnosed so I can get treatment. I've been diagnosed with arthritis already (28 years old). I had to wear a heart monitor for 48 hours due to palpitations and they cannot find a cause. I had 3 miscarriages last year and underwent several tests and they found no cause, but found that my egg count is extremely low. I've had a huge weight gain in the past year. Eating healthy doesn't help. Working out makes it worse. I have horrible stretch marks, I bruise easily, etc. My hair is falling out in handfuls. It's so incredibly thin. My moon face legitimately scares me. I dont recognize myself when I look in the mirror. I have gone through one round of testing which came back negative. I'm waiting for the results of my second round. My doctors don't believe me after my first round of tests coming back negative. They only look at the numbers. I've explained it can be cyclic. They dont seem to care at all about what is going on with me. Is there anything I can do? I am at my wit's end! If I get diagnosed with Cushings, they are transferring me to UNC, so I am very excited about that. I just dont know what to do other than what I'm already doing. I feel like a hamster trapped in a wheel. Do you have any suggestions?
@jessicakaye42415 жыл бұрын
TheM3agan same here
@PomegranateStaindGrn5 жыл бұрын
Have you made any progress? Are you doing ok now?
@803logic5 жыл бұрын
Extremely helpful video!!! Thank you
@donnadampier1239 жыл бұрын
I loved your video Larae! Thank you so much for what you do!
@jonescollinsfamily1019 жыл бұрын
I am glad hope it helps!
@asraaa95068 жыл бұрын
extremely thankful for such wonderful information, surely it is helping us,,,who r lookin forward for a diagnosis... plz keep us updating us with ur experience.
@Labyrinthine_Complexities4 жыл бұрын
I did the dexabetamethasone test. I scored 7x the normal amount. My spit tests always get screwed up due to odd sleeping schedule. 24 hr urine I barely collected any. So I'm slowly giving up.
@babyJes4443 жыл бұрын
Pcos?
@ricebowl68643 жыл бұрын
What is your odd sleeping schedule?Mine is too.
@riskybizness005 жыл бұрын
Is it something that could have happened when I was a teen and never diagnosed?
@jacintatonia31985 жыл бұрын
Can you have nerve issues with cushings I’m in the process of being diagnosed or seeing if I have it . They thought I had lupus so just seeing . I have the moon face and buffalo hump.
@Gulounna4 жыл бұрын
Whats your condition now and have you been diagnosed with anything related to cushing disease?
@angelakoh96582 жыл бұрын
Hello! I have been suffering from rapid weight gain & sudden hair loss, forgetful minds, fatigue.. I already had done 24 hr urine, saliva test that came out negative for cushings. I didn’t want to do dexamethasone suppressant test because I had a bad reaction from prednisone such as hair loss before, and also weight gain. They haven’t suggest me to do ct scan or mri. Would they only suggest me to do so only if other tests came out positive? Or can we still do the other ones?
@ricebowl68643 жыл бұрын
I went to your channel and really see no other videos on cushings.Maybe I overlooked something.
@ashleywilson837 жыл бұрын
Wonderful vlog! Thank you for the great advice. Wish me luck lol!
@Yvonne1103785 жыл бұрын
Hi I have all the symptoms including adrenal hyperplasia but my doctor says because I don't have stretch marks I can't have it so he's not looking into it anymore. Is he right could it be something else ?
@nalaamour5 жыл бұрын
Find another doctor who is not dismissive. You don't have to have all of the symptoms in order to have it. I don't like when doctors don't listen, and just going off of textbook memory. Smh...good luck to you 🙌🏽
@Gulounna4 жыл бұрын
Go for a cortisol blood test and urine cortisol if it comes high , do a ACTH test . These 3 trsts will nearly confirm a cushing disease..
@Guerrerossiempreguerreros5 жыл бұрын
Did you sweat a lot? Especially from the head ?
@nikkie17245 жыл бұрын
Yes, so much so that I look like I've just washed my hair, it will be dripping down my neck. Happens when I do things like housework, ironing even walking will cause excess head sweating. Extreme fatigue and weight gain.
@tillingwall3 жыл бұрын
Brain scan with contrasting April 13 The scanned my adrenal glands 2 years ago. Nothing
@asraaa95067 жыл бұрын
hi Rae how are u no posts anymore...
@asraaa95068 жыл бұрын
rae iam happy and its a big achievement for me ,that a convinced my doc for testing me for cushings..... so i have a question now, that i was put on tricyclic. antidepressants, High Bp med, pain killers etc in for 2 yrs now... so shud i stop taking the meds now b4 my 24 urine test.... and possibly how many days b4 my test ...doc dint mention that..... i dont want to have a false negative test.......bcoz of the meds i already took.......
@Gulounna4 жыл бұрын
Were you diagnosed with cushing disease? If yes what was the treatment? Pituitary gland surgery?
@gjh65705 жыл бұрын
I just tested for cortisol and it came back normal. Can I still have Cushing?
@EM-ps4kr5 жыл бұрын
Yes, you could. Keep testing if you think you have it. Check growth hormone, check thyroid too
@gjh65705 жыл бұрын
@@EM-ps4kr What is growth hormon?
@EM-ps4kr5 жыл бұрын
Google adult growth hormone deficiency. It is another rare ish type endocrine disease. Can check out the Magic Foundation too.
@courtneyritter60956 жыл бұрын
So how did they dx if u didn't suppress?
@lorib53984 жыл бұрын
My problem with all this is how weight gain can lead to breast cancer, by fat creating estrogen, and that leads to breast cancer.
@kellyclover59535 жыл бұрын
My immune system has been breaking down and I have feared it might be because of excessive cortisol secretion but I haven't yet taken the right tests to find out for sure. I have been having problems with cold-like symptoms for over 2 months with no sign that it will ever clear up. Doctors did a throat swab to rule out strep throat and a chest X-ray to rule out pneumonia. They seemed unduly eager to brand it as just an allergy. I think they are dead wrong. I refused a steroid injection they recommended because I feared it would further weaken an immune system that was already damaged from whatever cause. CBC tests showed a precipitous drop in eosinophils, a common result of Cushing's disease. There are places like AnyLabTestNow and Walkin Lab where you can pay to run medical tests which no doctor has ordered. Sadly there are a few states in the northeast where they have restrictions or bans on such businesses.
@nalaamour5 жыл бұрын
Try and make a trip and travel to the places for the testing if it will give you some reassurance.
@Lovemygoldenful5 жыл бұрын
Thyroid. Thyroid has all of these symptoms as well
@PomegranateStaindGrn5 жыл бұрын
Nope.
@hereisabeer5 жыл бұрын
No, more like PCOS is the closest answer. For women for sure XD
@sparanormaali2 жыл бұрын
Yeah the symptoms are pretty similar, my sister has Cushing's and the diagnosis was postponed because it was hidden by her hypothyroidism.