Many tests must be run to rule out the diagnosis of Cushing's, yet we hear from many who suspect Cushing's that their primary care doctors or endocrinologists REFUSE to order these tests because they say Cushing's is so rare that it is impossible to have it. Most just say we have PCOS and give us anti-depressants and metformin.
RIDICULOUS.
Yet, what doctors don't tell us is that Cushing's must be ruled out to make the diagnosis of PCOS. In order to rule Cushing's out, doctors must run tests to gauge the status of all the hormones of the hypothalamus-pituitary-adrenal axis, succinctly called the HPA axis.
Doctors will try to run thyroid tests and tell you that you are fine. No no no. They just order ALL the hormones produced by or related to the pituitary and adrenal glands.
So, what can you do to ensure the doctor orders the tests and you don't waste your time and money on a doc that won't do anything to help you?
1) Do your homework.
Prepare for your doctor's appointment. Read the tips I wrote 10 years ago about how to prepare for your doctor visit.
Tips to steady your feet
Prepare for your doctor's appointment. Read the tips I wrote 10 years ago about how to prepare for your doctor visit.
Tips to steady your feet
2. Make sure your symptom list is comprehensive. Do not start off with weight gain as your main symptom. Docs will take that and talk about diet and exercise. You will never get to talk again. That doc will go on and on and you will feel defeated. Peak their curiosity by relaying this myriad of strange and seemingly unrelated symptoms. I listed the symptoms in a specific order to maximize impact.
3. Be prepared to be blown off.
That doctor, not matter how good he/she is supposed to be, will act like it is impossible for you to have Cushing's. It happens all the time, to nearly all of us, so don't be alarmed. Knowing this in advanced should make you get serious about the task at hand. That doctor is the gatekeeper who will decide what happens to you next. Please understand that it is your job to make sure you get what you need out of that appointment, namely lab orders or imaging orders.
That doctor, not matter how good he/she is supposed to be, will act like it is impossible for you to have Cushing's. It happens all the time, to nearly all of us, so don't be alarmed. Knowing this in advanced should make you get serious about the task at hand. That doctor is the gatekeeper who will decide what happens to you next. Please understand that it is your job to make sure you get what you need out of that appointment, namely lab orders or imaging orders.
4. Are you sick or not?
Sit up straight. Be confident. You know your body better than anyone, and you know something is wrong. Don't let doctor interrupt you and dismiss you. Your life depends on you standing up for yourself. Now is not the time to diminish your symptoms and downplay its effects. If you find your doctor doing that for you, you must stand up for yourself and get the help you came for.
Sit up straight. Be confident. You know your body better than anyone, and you know something is wrong. Don't let doctor interrupt you and dismiss you. Your life depends on you standing up for yourself. Now is not the time to diminish your symptoms and downplay its effects. If you find your doctor doing that for you, you must stand up for yourself and get the help you came for.
5. Psyche yourself up and refuse to leave without being properly evaluated for Cushing's.
When the doctor begins to tell you how Cushing's is so rare, remind him/her that doctors are taught in medical school to look for the one diagnosis to explain all the symptoms, not have several scattered diagnoses. Also, tell them about the probability of having Cushing's, and how if all the test results, symptoms, and imaging results suggest Cushing's, it is likely Cushing's. If it walks like a Cushie and cries like a Cushie, it's a Cushie.
6. Be knowledgeable and medically aware.
I will list all the labs that will give you the big picture about your hormone health. I know what all of these tests are, and you need to know them, too. Spend some time on this super helpful site, Lab Tests Online. Search for the test in the search box. Then scroll down to common questions. My favorite section is "What do my test results mean?" This section is awesome because it tells us what both high results and low results mean. I have been using this site for over a decade, and it has been the cornerstone to my medical knowledge.
Print the following list and say to the doctor:
I will list all the labs that will give you the big picture about your hormone health. I know what all of these tests are, and you need to know them, too. Spend some time on this super helpful site, Lab Tests Online. Search for the test in the search box. Then scroll down to common questions. My favorite section is "What do my test results mean?" This section is awesome because it tells us what both high results and low results mean. I have been using this site for over a decade, and it has been the cornerstone to my medical knowledge.
Print the following list and say to the doctor:
"I've done extensive reading in the medical journals. The results of these tests I'm suggesting will give us the most comprehensive look at how my HPA axis is functioning." If the doctor says, S/he can order it but won't know how to interpret it, thank them and say, You will understand what the tests means. After all, you have been researching that, too! (right?)
*Tests to check overall health and HPA axis
• Comprehensive metabolic panel (CMP)
• Complete Blood Count (CBC)
• Hemoglobin a1c
• Ferritin
• Vitamin D
• Vitamin B12
*Pituitary and adrenal hormones
• cortisol serum, 8 am
• ACTH plasma, 8 am (drawn into chilled tube, spun down immediately)
• aldosterone
• renin (drawn into chilled tube, spun down immediately)
• DHEA-S
• IGF-1 (for GH)
• FSH
• LH
• prolactin
• estradiol
• progesterone
• testosterone, total + bio available
• TSH
• free T-3
• free T-4
• reverse T-3
*Cortisol testing
• low dose dexamethasone suppression test
• consecutive days doing urine collection and saliva test on the same day*
• 24-hr UFC x 4
• midnight saliva cortisol x 4 (Docs suggest 11 pm but we know 12:15 am works better)
• midnight cortisol serums x 10, completed at the lab at the local hospital.
• midnight saliva cortisol x 4 (Docs suggest 11 pm but we know 12:15 am works better)
• midnight cortisol serums x 10, completed at the lab at the local hospital.
— this order for blood tests must be on the doctor's prescription pad,
with patient's name, date of birth, test name and frequency, and diagnosis code.
12 am + 12:30 am cortisol serum x 10
E24.9 Cushing's syndrome, unspecified
with patient's name, date of birth, test name and frequency, and diagnosis code.
EXAMPLE:
Moxie Melissa dob: 11/1/1980
Moxie Melissa dob: 11/1/1980
12 am + 12:30 am cortisol serum x 10
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| The way the MRI machine "slices" through the pituitary at 2-3 millimeter slices. Source: Oregon Health Science University, School of Medicine, Diagnostic Radiology |
*Imaging (when the time comes, not part of initial workup)
• CT scan of adrenals
• MRI of the pituitary, dynamic protocol
— Images are taken. Then IV contrast is given while images are taken. This is the dynamic part of the protocol. These images are critical for radiologist and neurosurgeon to see how the contrast dye is absorbed. Normal tissue will absorb the contrast uniformly, but tumors/adenomas will not absorb the contrast.
Learn more about dynamic protocol of the pituitary.
— Images are taken. Then IV contrast is given while images are taken. This is the dynamic part of the protocol. These images are critical for radiologist and neurosurgeon to see how the contrast dye is absorbed. Normal tissue will absorb the contrast uniformly, but tumors/adenomas will not absorb the contrast.
Learn more about dynamic protocol of the pituitary.
7. Persistance is key. So is a smile.
Have a "Get It Done," "Won't Take No for an Answer", but "Catch more Flies with Honey than Vinegar" attitude. Persistance is key. So is a smile.
Have a "Get It Done," "Won't Take No for an Answer", but "Catch more Flies with Honey than Vinegar" attitude. Persistance is key. So is a smile.
8. It's not you. It's them.
Remember that some doctors are jerks and decide if they will help you. In the end, it could be them and not you. If you realize you will not get anywhere after concerted efforts, tell the doctor that you are disappointed in this service, and you won't be coming back. Or, like many Cushies have been reduced to, hold back your emotions for as long as you can and burst into tears in your car. It happens, and it isn't your fault. Read this link about some doctors being bad and you will realize, this is an uphill battle even if we didn't have Cushing's. It is just a dire situation once we finally find the name to what ails us after so many years.
Remember that some doctors are jerks and decide if they will help you. In the end, it could be them and not you. If you realize you will not get anywhere after concerted efforts, tell the doctor that you are disappointed in this service, and you won't be coming back. Or, like many Cushies have been reduced to, hold back your emotions for as long as you can and burst into tears in your car. It happens, and it isn't your fault. Read this link about some doctors being bad and you will realize, this is an uphill battle even if we didn't have Cushing's. It is just a dire situation once we finally find the name to what ails us after so many years.
Condescending doctors and how to deal with them
9. Graphics for diagnosis
I've included this graphic only as a sample, not as the gospel. Why? Because this and the many graphics found in Google images only apply to patients who are FLORID, meaning cortisol results will all be high. These processes do no apply to CYCLICAL patients like me, who despite having normal UFCs and suppressed on the low dose dexamethasone suppression test, STILL DO HAVE CUSHING'S.
My very own CSI: Cyclical Cushing's
9. Graphics for diagnosis
I've included this graphic only as a sample, not as the gospel. Why? Because this and the many graphics found in Google images only apply to patients who are FLORID, meaning cortisol results will all be high. These processes do no apply to CYCLICAL patients like me, who despite having normal UFCs and suppressed on the low dose dexamethasone suppression test, STILL DO HAVE CUSHING'S.
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| Source: American Association of Endocrine Surgeons |
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I hope this helps prepare you for your visit to the endocrinologist. Despite Cushing's being an endocrine disorder, these doctors are convinced before you even talk that you don't have it. They can tell just by looking at you! Understand the wall that stands before you, and figure out a way to get to your goal: a proper Cushing's work up.
Be sure to like my facebook page: Fight Cushing's with Moxie. Bye for now!
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