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.
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.
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
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.
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!
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
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.
+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
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.
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?
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.
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
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.
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?
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 ?
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 🙌🏽
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.
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.
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.
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.......
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I think that Cushings is not as rare as they think it is; just rarely diagnosed!
100% this comment!
EXACTLY
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.
yup
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.
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
One of the best videos I’ve seen…it gives you lots of powerful information.👍🏻👍🏻👍🏻
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
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.
How are you doing now? Have you gotten the answers you need?
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!
Adrenal insufficiency?
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
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
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.
I hope you got the results u wanted
+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
Thanks so much for your videos. They've been very helpful and informative...
Thank you. Glad it helped
Thank you for your channel!!!
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.
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?
TheM3agan same here
Have you made any progress? Are you doing ok now?
I loved your video Larae! Thank you so much for what you do!
I am glad hope it helps!
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.
Pcos?
What is your odd sleeping schedule?Mine is too.
Is it something that could have happened when I was a teen and never diagnosed?
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
Thank you very much for sharing your experience. The video is very helpful. I wish you the best.
Extremely helpful video!!! Thank you
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.
Whats your condition now and have you been diagnosed with anything related to cushing disease?
I am at the end of my rope. Thank you.
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?
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 ?
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 🙌🏽
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..
Did you sweat a lot? Especially from the head ?
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.
I went to your channel and really see no other videos on cushings.Maybe I overlooked something.
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.
Wonderful vlog! Thank you for the great advice. Wish me luck lol!
Brain scan with contrasting April 13 The scanned my adrenal glands 2 years ago. Nothing
My problem with all this is how weight gain can lead to breast cancer, by fat creating estrogen, and that leads to breast cancer.
hi Rae how are u no posts anymore...
So how did they dx if u didn't suppress?
I just tested for cortisol and it came back normal. Can I still have Cushing?
Yes, you could. Keep testing if you think you have it. Check growth hormone, check thyroid too
@@EM-ps4kr
What is growth hormon?
Google adult growth hormone deficiency. It is another rare ish type endocrine disease. Can check out the Magic Foundation too.
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.
Try and make a trip and travel to the places for the testing if it will give you some reassurance.
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.......
Were you diagnosed with cushing disease? If yes what was the treatment? Pituitary gland surgery?
Thyroid. Thyroid has all of these symptoms as well
Nope.
No, more like PCOS is the closest answer. For women for sure XD
Yeah the symptoms are pretty similar, my sister has Cushing's and the diagnosis was postponed because it was hidden by her hypothyroidism.
You’re not a doctor?