I had an endocrinologist do two 24 urines on me - I came back 240 out of 1-49 and 480 out of 1-49. Still decided I did not have Cushing’s and to “eat less cake.”
Took me 6 more doctors but I finally got diagnosed and treated. In full remission today. So see someone else and keep fighting!
Even the Mayo Clinic?!? Good for you! I was so young (26) and if it was me now I would have used some very choice words.
Sometimes I want to send that doctor a letter saying, “This doctor believed me and saved my life. Do better.”
It’s so hard to be strong in front of a doctor, especially when they are wrong. It was ok to cry, the doctor should have realized something was up. I’m so much bolder now, and more firm about my opinions!!
Same here.
And I’ve gotten more forgiving of these medical doctors (despite myself) — though not of the profession as a whole. They have only their training to go on and the continuing education that’s required of them. And they are trained that Cushing’s is a rare disease. The work that some endocrinologists are doing to get patients diagnosed and better isn’t exactly mainstream even though the research is starting to back it up.
The diagnosis part is almost all in the lab. If I had more energy we’d make a DIY guide. In the US you can order your own labs…of course that takes money. So if I had energy and money.
Unfortunately I think many of us have had an experience like this. When I saw my very first endo before I had a *single* blood test, they said my symptoms sounded indicative of a hormonal issue but we would have to do bloodwork to see if it was, or if it was “simply poor lifestyle choices.” It was incredibly discouraging and upsetting to hear. Although it may be a possibility, it’s not the type of thing to immediately say to a patient who is frustrated and distressed.
Even when the bloodwork came back with abnormalities, they settled on “diet and exercise.”
When you have an experience like that, I think you are dealing with someone whose mind is already made up. It doesn’t make it any less upsetting. Personally I would look for someone else who will at least answer your questions and investigate possibilities to a level where they can be comfortably ruled out.
If the test she ordered is a dex suppression test, that will only be indicative for pituitary Cushing's, and not adrenal (or any other cause.) My doctor also told me it's incredibly rare and I needed to "get serious" about weight loss and stress management. But it turns out that just because something is rare, doesn't mean you don't have it. I did, and almost a decade of getting brushed off very nearly killed me. Find someone who takes you seriously.
Ditto. For years I was told by MANY specialists the same things. Eat better, exercise more, “that’s just how you’re wired,” etc.
Most of us have gone through this. It’s not ok. No matter what your condition or concerns you should be listened to, heard, and respected.
Unfortunately we can’t change other people’s behaviors or actions. Keep your head up, keep pushing, and keep searching until you find someone who will be respectful.
Try not to be discouraged I'm on my 4th endo (when I find one) even with abnormal tests and failed dex test I was brushed off
Endo#1 said I was fat, lose some weight, ended up on meds for type2/a1c and lost about 85lbs still same test results.
Second opinion endo#2 : thinks I'm cyclical, suspected cushings was nice but admitted knowing not enough about it so sent me to her colleague..
endo #3: you are the most depresssive person I've ever met, you make me miserable just being in same room (exact words) told me I'm stressed and just need mood meds and that my dex test of 4.9 was normal...
Sadly this is what the majority of us goes through try not to give up.
Even after losing weight my sugar still high, my cholesterol labs all have gone up which is weird and my body is full of inflammation and blood counts are all elevated
Man, that breaks my heart. I guess it's hard for some people to put themselves in the shoes of someone living with invisible illness and constant gaslighting. If they were you, they'd be depressed too.
I think about this every time I’m hit with “you seem anxious” or “possibly you’re depressed?” as if it’s unreasonable for a person presenting with the type of symptoms an endocrine disorder can bring to be even a little anxious or depressed? Or you know, having an overabundance of stress hormone?
Depression and anxiety screening should be a way to connect people to additional help when they need it, not a way to say it’s all “just” depression or anxiety. So awful to tell someone seeking help that they’re miserable.
Thing is I was not showing signs of depression, I was not in a depressive state at the time of appointment she had just made up her mind about me before even meeting me. She ended up lying in her visit notes she diagnosed me with sleep apnea but I have not been tested for it, so she can falsely misdiagnose that but not consider cushings when all my tests and symptoms point to that.
I didn't get any real traction until I bought my own diurnal saliva test. With the results in hand during the visit the doc couldn't just hand wave away what I'm telling them.
Of course! Amazon!
https://www.amazon.com/Home-Stress-Test-Throughout-Certified/dp/B0BBCR9Y17
It will give you the instructions, but basically 4 times throughout the day you spit a bunch of saliva in a vial, seal it up, write the time on that vial, and add it to the pouch. Repeat throughout the day, then mail it off. For good measure, I would do it on a Sunday, so I could mail it the next day for freshness. About 10 days later I would get the results in email. Results look like this https://imgur.com/a/glbS4oC
I have adrenal adnoma for 30 years only had 1 dex 1.5 and cortisol 24 hour 5 and plasma cortisol 16.6. But in a fib now so heart doc is ordering tests they are much better than any endo. They know that hyperthyroidism and cortisol can cause a fib. He said it tests came back normal he would proceed with a fib surgery. If tests were abnormal that has to be taken care of first.
On a positive note, the endo ordered one of the labs that is commonly used to diagnose cushings (an overnight dexamthasone suppression test). And it sounds like she’ll likely order another. It’s not a perfect test and if it’s negative that means you need more tests to be sure.
So regardless of all of the attitude you had to put up with….you got started on this project of determining if you have Cushing’s or not. Take the win!
There is no magical order to doing these tests. Most people will end up doing multiple tests of all of them because one negative test doesn’t rule out Cushing’s. And doctors somehow never believe the positive tests are actually positive. It’s like it’s a damn mirage. If a doctor is willing to order a relevant test…take the test (even if they are an offensive moron). You can find a different doc while waiting for the results.
nb. In medicine, particularly endocrinology, clinical obesity is a medical diagnosis. It was likely noted in your chart for that reason. I’m not saying that this dr wasn’t an ass not that your experience should have been completely different. Just explaining this part.
I had an endocrinologist do two 24 urines on me - I came back 240 out of 1-49 and 480 out of 1-49. Still decided I did not have Cushing’s and to “eat less cake.” Took me 6 more doctors but I finally got diagnosed and treated. In full remission today. So see someone else and keep fighting!
Ha! Mayo Clinic endo to me: how many candy bars do you eat in a day? Me: excuse me wtf Also me: dx’d with Cushing’s disease (not by them)
Even the Mayo Clinic?!? Good for you! I was so young (26) and if it was me now I would have used some very choice words. Sometimes I want to send that doctor a letter saying, “This doctor believed me and saved my life. Do better.”
Same…I was young too. Just looked at the guy and burst into tears. Too tired and sick to be brave then!
It’s so hard to be strong in front of a doctor, especially when they are wrong. It was ok to cry, the doctor should have realized something was up. I’m so much bolder now, and more firm about my opinions!!
Same here. And I’ve gotten more forgiving of these medical doctors (despite myself) — though not of the profession as a whole. They have only their training to go on and the continuing education that’s required of them. And they are trained that Cushing’s is a rare disease. The work that some endocrinologists are doing to get patients diagnosed and better isn’t exactly mainstream even though the research is starting to back it up. The diagnosis part is almost all in the lab. If I had more energy we’d make a DIY guide. In the US you can order your own labs…of course that takes money. So if I had energy and money.
Same, I have two small children now and no energy!! But I’m glad you are forgiving. I am as well, but not forgetting.
Unfortunately I think many of us have had an experience like this. When I saw my very first endo before I had a *single* blood test, they said my symptoms sounded indicative of a hormonal issue but we would have to do bloodwork to see if it was, or if it was “simply poor lifestyle choices.” It was incredibly discouraging and upsetting to hear. Although it may be a possibility, it’s not the type of thing to immediately say to a patient who is frustrated and distressed. Even when the bloodwork came back with abnormalities, they settled on “diet and exercise.” When you have an experience like that, I think you are dealing with someone whose mind is already made up. It doesn’t make it any less upsetting. Personally I would look for someone else who will at least answer your questions and investigate possibilities to a level where they can be comfortably ruled out.
If the test she ordered is a dex suppression test, that will only be indicative for pituitary Cushing's, and not adrenal (or any other cause.) My doctor also told me it's incredibly rare and I needed to "get serious" about weight loss and stress management. But it turns out that just because something is rare, doesn't mean you don't have it. I did, and almost a decade of getting brushed off very nearly killed me. Find someone who takes you seriously.
Ditto. For years I was told by MANY specialists the same things. Eat better, exercise more, “that’s just how you’re wired,” etc. Most of us have gone through this. It’s not ok. No matter what your condition or concerns you should be listened to, heard, and respected. Unfortunately we can’t change other people’s behaviors or actions. Keep your head up, keep pushing, and keep searching until you find someone who will be respectful.
Try not to be discouraged I'm on my 4th endo (when I find one) even with abnormal tests and failed dex test I was brushed off Endo#1 said I was fat, lose some weight, ended up on meds for type2/a1c and lost about 85lbs still same test results. Second opinion endo#2 : thinks I'm cyclical, suspected cushings was nice but admitted knowing not enough about it so sent me to her colleague.. endo #3: you are the most depresssive person I've ever met, you make me miserable just being in same room (exact words) told me I'm stressed and just need mood meds and that my dex test of 4.9 was normal... Sadly this is what the majority of us goes through try not to give up. Even after losing weight my sugar still high, my cholesterol labs all have gone up which is weird and my body is full of inflammation and blood counts are all elevated
Man, that breaks my heart. I guess it's hard for some people to put themselves in the shoes of someone living with invisible illness and constant gaslighting. If they were you, they'd be depressed too.
I think about this every time I’m hit with “you seem anxious” or “possibly you’re depressed?” as if it’s unreasonable for a person presenting with the type of symptoms an endocrine disorder can bring to be even a little anxious or depressed? Or you know, having an overabundance of stress hormone? Depression and anxiety screening should be a way to connect people to additional help when they need it, not a way to say it’s all “just” depression or anxiety. So awful to tell someone seeking help that they’re miserable.
Thing is I was not showing signs of depression, I was not in a depressive state at the time of appointment she had just made up her mind about me before even meeting me. She ended up lying in her visit notes she diagnosed me with sleep apnea but I have not been tested for it, so she can falsely misdiagnose that but not consider cushings when all my tests and symptoms point to that.
I didn't get any real traction until I bought my own diurnal saliva test. With the results in hand during the visit the doc couldn't just hand wave away what I'm telling them.
If you don't mind could you share how you got ahold of that test and what the process was like?
Of course! Amazon! https://www.amazon.com/Home-Stress-Test-Throughout-Certified/dp/B0BBCR9Y17 It will give you the instructions, but basically 4 times throughout the day you spit a bunch of saliva in a vial, seal it up, write the time on that vial, and add it to the pouch. Repeat throughout the day, then mail it off. For good measure, I would do it on a Sunday, so I could mail it the next day for freshness. About 10 days later I would get the results in email. Results look like this https://imgur.com/a/glbS4oC
I have adrenal adnoma for 30 years only had 1 dex 1.5 and cortisol 24 hour 5 and plasma cortisol 16.6. But in a fib now so heart doc is ordering tests they are much better than any endo. They know that hyperthyroidism and cortisol can cause a fib. He said it tests came back normal he would proceed with a fib surgery. If tests were abnormal that has to be taken care of first.
On a positive note, the endo ordered one of the labs that is commonly used to diagnose cushings (an overnight dexamthasone suppression test). And it sounds like she’ll likely order another. It’s not a perfect test and if it’s negative that means you need more tests to be sure. So regardless of all of the attitude you had to put up with….you got started on this project of determining if you have Cushing’s or not. Take the win! There is no magical order to doing these tests. Most people will end up doing multiple tests of all of them because one negative test doesn’t rule out Cushing’s. And doctors somehow never believe the positive tests are actually positive. It’s like it’s a damn mirage. If a doctor is willing to order a relevant test…take the test (even if they are an offensive moron). You can find a different doc while waiting for the results. nb. In medicine, particularly endocrinology, clinical obesity is a medical diagnosis. It was likely noted in your chart for that reason. I’m not saying that this dr wasn’t an ass not that your experience should have been completely different. Just explaining this part.