As some of you know, I’ve been battling Cushing’s Disease for the past several yeares.
Yes, I know this is a CPAP/sleep disorders blog – but – my life is multi-faceted, especially when it comes to chronic illness, so I will be expanding to put other kinds of content as well.
I talk about my Cushing’s journey a lot on my YouTube Channel (which is just me talking into a poor-quality laptop camera, hah) and get lots of questions, so I wanted one place that I can send people to get info about exploring a Cushing’s diagnosis.
This post contains affiliate links – apologies in advance – this $1500 brain surgery bill isn’t paying itself, unfortunately.
I will be editing this as time goes on to try to add any necessary details or things that I’m forgetting.
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I am writing this in a feeble attempt to help other people.
Please know that this is NOT medical advice, it is just advice from a person who spent the last four years essentially being psychologically tortured by the healthcare system. (This is my opinion, yadda yadda yadda)
Privilege check – there were many factors that affected my journey that I want to acknowledge:
- I’m not rich, but I did have a decent amount of financial privilege to get me through this process. I know that is absolutely not the case for everyone. Having financial privilege sped things up for me (even though it still seemed to take for-ev-er.)
- I am white and appear able-bodied. This affects how I am treated by the medical system as well.
- I have a bachelor’s degree and admin experience, which helped jump through all the hoops. I also was not working for some of the time that I was pursuing diagnosis/treatment, which is something that helped this process in terms of time (although obviously it meant less money.)
- This list is not comprehensive – there are other ways that my privilege influenced this process for me. I will try to edit to add them as I think of them.
Honestly, I am reluctant to even write this because I want to help, but I truly don’t know if I can. The medical system is SO INCREDIBLY BROKEN and even with all the blood, sweat, tears and urine (yes, lots of urine) that I put into it, it took me four years and several mental health crises to get where I am today. Really, more than that – I’ve had some of these symptoms since I was 15 (I’m now 40!)
But, I figure it’s worth a shot and I have to at least try to help.
Again – not medical advice, all of this is my opinion.
I wish you the best – feel free to reach out via email cpapbabes@gmail.com
Step One:
Start documenting EVERYTHING. Symptoms. Lab results. Visit summaries. Organize that shit. Binders. Online files. Spreadsheets. Notebook.
If you make it to Dr. Friedman (several steps later) – he likes all your labs summarized in a spreadsheet. Why not start now?
Here is my spreadsheet of results for you to use as a guide if you so choose.
Step Two:
If you have any problems with your mental health, start treatment. Antidepressants are one option, therapy is another option. Both? Even better!
Keep in mind that these things might not work, but this is a technicality. When your provider blames your symptoms on anxiety and depression, you can let them know that you are currently pursuing mental health treatment and your symptoms are still persisting.
Step Three:
Get a sleep study. If you have sleep apnea (which Cushing’s can contribute to) then use the CPAP. If it’s uncomfortable, find a way to use it anyway. Join some CPAP Facebook groups.
Repeat after me: if your provider can find something else that they think might be causing your symptoms, they will. Eliminate as many potential causes as you can.
Step Four:
If possible start an exercise routine.
Now, I know you likely feel like absolute trash, so I don’t really expect you to do this. But, if you can – do it.
Remember, you’re going to want to do anything you can to prove to your doctor that your symptoms are caused by an actual medical problem and not any lifestyle things that you haven’t addressed.
The DeskCycle was a lifesaver for me when I was too tired to stand up but still wanted to exercise.
Step Five:
See your primary doctor. Get as much basic hormonal bloodwork done as you can. If your primary will order you cortisol tests, take them up on it – 24 hour urine, midnight salivas, etc.
Your cortisol tests might come back normal. Hormones are cyclical. For some reason though, doctors don’t want to believe that.
You might need several more data points in order to get the data that you need. Your doctor may not want to order these tests. They might want to send you to an endocrinologist. That leads us to step six…
Step Six:
Order your own tests.
Is this expensive? Yep. Is it a huge pain? Yes. Is it a good thing to do if your doctor won’t order any more tests? Also yes.
Look online for places that let you order your own tests. Usually they’ll have you bring them to LabCorp or Quest. If there’s not a LabCorp or Quest by you, plan on doing a lot of driving – most local doctors offices aren’t willing to accept these orders.
I spent a lot of time taking the ferry from my island home to the mainland with my jugs of pee to deliver to LabCorp. It was a blast.
I used Walk In Lab. They’re not the best but they’ll do. (Yes, that’s an affiliate link – you can get those for anything these days. Wild.)
If you want data for yourself, sometimes the ZRT tests are helpful, but doctor won’t really give a shit about them, so don’t bother if you’re tight on money.
You can also work with a naturopath to see if they will help you with testing, but 2/2 naturopaths that I saw during this process just wanted to sell me a LOT of supplements and blame my issues on my diet.
Step Seven:
Get that endocrinology referral. Bring in your own tests that you’ve ordered.
It’s likely that the endocrinologist will tell you that you’re fine. It’s likely that you’re not.
It’s also likely that the endocrinologist will say something like “It’s not Cushing’s, Cushing’s is rare” but they will also not do ANY further investigation into what’s ailing you.
STAY PROFESSIONAL AND POLITE even though you want to rage and rage and cry and rage.
If you make it to the end of this journey, you will get the satisfaction of writing them reviews to tell the world how they treated you. DON’T write the review when you’re pissed off – wait until you get treatment and feel better so that you can prove yourself.
Step Eight:
Your primary doc and/or the endocrinologist will likely want to send you to one million specialists to address every single symptom separately. Try to go see them to rule out other stuff. They’ll all tell you that you have anxiety and you will be mad.
Step Nine:
If the first endocrinologist sucked, try some other endocrinologists. I’ve heard that it takes some people up to eight different endocrinologists to get diagnosed. Personally it took me six total. All of them were pituitary specialists (insert clown emoji here)
Really the only doctor I know of who can even get close to actually investigating is Dr. Friedman in California. He’s not perfect by any means but he’s the one who finally listened to me, looked at my test results and ordered my MRI, which, surprise – showed at least one microadenoma.
(Other endocrinologists said “Just because you have an adenoma doesn’t mean that it’s causing your symptoms!”)
The thing is, Dr. Friedman doesn’t take insurance and is expensive. (I mean, in the grand scheme of things he’s not that expensive – he charges what he needs to charge to help people – but paying out of pocket is not ideal.) If you want to save money, continue to see endocrinologists that take insurance if you have insurance. Try to look at pituitary specialists and/or other doctors who have helped people diagnose cyclical Cushing’s. There are a couple of Cushing’s Facebook groups that may have some insight.
Step Ten:
Keep testing for cortisol highs. Bring these to doctors. In an ideal world, they will eventually order you an MRI.
Step Eleven:
If they won’t order you an MRI I have no fucking clue what you’re going to do. Plus, if you do have a pituitary tumor they are sometimes too small to find on the MRI.
There is also a chance that you have an adrenal tumor that is overproducing cortisol. I don’t know as much about this, but a CT scan might be an option.
Step Twelve:
They might do the MRI and find nothing. That doesn’t mean that you don’t have Cushing’s. It might though. Who knows. Keep testing and exploring if you really think you have a cortisol problem
Step Thirteen:
You got your MRI and, congrats, you have a pituitary adenoma! They might put you on a drug to lower your cortisol. Take it! You’re going to feel like hot trash for the first couple of weeks, and then it will help, hopefully. If it doesn’t help then cortisol might not be your issue. Who knows.
I will say, it may not help as much as you want. I’m was on it and felt like shit most days, but if I didn’t take it for a day…whew-ee, my day was fucking terrible.
Step Fourteen:
Once you’ve been on a cortisol-lowering med and its helped, see if you can get surgery.
Dr. Friedman works with Dr. McCutcheon, who I think probably has a hat that he pulls his answers out of “tumor” or “cyst.”
If he tells you that you have a cyst, get a second opinion from another neurosurgeon.
If you’re lucky, you will find a neurosurgeon who is willing to remove the tumor.
Step Fifteen:
Get surgery and pray that it works.
If you have cyclical Cushing’s there’s a good chance that your cortisol will NOT drop in the hospital. Because of this, they may tell you that your surgery was unsuccessful.
Please do NOT let this bother you – for cyclical patients, it can take 4-6 weeks for cortisol to drop. (Source – that’s what my doctor told me and low and behold, mine dropped at five and a half weeks!)
Or, if they won’t do surgery, stay calm and professional (I know this is HARD AS FUCK) and keep pushing for answers.)
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Again, this is hard to write because sometimes there isn’t a definitive answer. Of course, you might not have Cushing’s – but you might, you know? I had so many doctors tell me that I didn’t, but now, here I am eight weeks-post op with much lower cortisol feeling better than I have in years.
I wish you the best. I wish this were easy. I wish the medical system was here to help us.
