I have learned so much on this cushing's journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.
Obviously - my own opinions here!
My best wishes to everyone on their cushings journey.
1. Trust your instincts.
2. Trust your instincts some more.
3. Do your research – read everything you can, talk to people, use this website and the message boards. Slog through research papers. Not all of it will make sense, but it is amazing how much you can learn, and how much it will help you on your diagnostic journey.
4. Not everyone will have every one of the "typically described" symptoms of the hump, moon face, straie, and central obesity. Some people get them all, some people get some, and others don't develop these signs.
5. While substantial weight gain is very common with Cushings, there are some people who have only mild or moderate weight gain. What seems to be the common thread, however, is the inability to lose it in spite of diet and exercise.
6. You don't need to test positive on every single test, or test positive on every type of test, to have Cushings. There is substantial variation in how we present with the disease, and in which tests will identify the excess cortisol in our bodies. Do not let a single negative result on any one test, or negative results on a particular type of test, prevent you from aggressively pursuing a Cushings diagnosis if there is strong suspicion. For example, it is possible for an individual to have proven Cushings without ever having a positive on a ufc or dex suppression test.
7. Do not waste time, energy and financial resources on unhelpful doctors.
8. Whenever possible, get to a true Cushings expert as soon as the disease is suspected.
9. When seeing a new endocrinologist, don't be afraid to ask:
a. What is your opinion on cyclic or intermittent Cushings?
b. When and how might you diagnose a mild or early case of Cushings? Do you recommend treatment in those cases?
c. Do you believe it is possible for someone to have Cushings without all or some of the commonly associated stigmata (straie, hump, moon face, substantial weight gain)?
d. What is your diagnostic criteria for Cushings?
i. Lab tests
ii. Physical symptoms
e. How many patients have you diagnosed with Cushings?
f. What surgeon(s) do you recommend and work with for your patients with tumors that are causing Cushings?
g. If Cushings is suspected, how can we work together to maximize testing to give us answers as quickly as possible? How can I most easily get my test results from your office?
10. Make sure your doctor is willing to support the amount of testing that may be necessary to allow you to begin to distinguish between high and low periods. Make sure your doctor is also willing to support multiple types of tests to appropriately rule in/out Cushings.
11. Create a binder and get copies of every single test. (Make additional copies of test results so that you have extra available to perhaps send in advance to a new doctor, or to be able to readily provide a copy during your appointment as necessary). Get copies of clinic notes as well. Organize them into the binder. My binder has the following tabs:
a. Spreadsheet that summarizes most relevant test results
b. Current medical history/summary of symptoms
c. Imaging reports
d. Cortisol test results (serum, salivary, ufcs)
e. Other lab results (including EKGs and other relevant tests)
f. Eyes (visual field tests, letter from eye doctor, etc)
g. Clinic Notes
12. Research tests. It is not uncommon for a test to be ordered or interpreted incorrectly.
13. MRIs are only tools. They can be interpreted differently by different people and they may not accurately identify the extent or location of a tumor.
14. Create a spreadsheet, or use a journal, to track symptoms daily. Log test results so that you can begin to see patterns. Symptoms may be as subtle as canker sores, or cracked lips or skin, a single pimple, or may be more obvious such as severe swings in mood and energy levels, insomnia, bad acne, etc. Write it all down and track it.
15. Test whenever you feel different.
16. Symptoms of a high for you may or may not match what is typically described for a high. You may experience a high differently. For example, achiness is frequently described as a low symptom, but it may occur during a high in your case. Tracking symptoms and correlating test results help to identify patterns of a high.
17. Start testing your own blood sugar to identify any possible blood sugar problems and to look for possible correlation between episodes of high blood sugar and high cortisol levels. This won't apply to everyone, and may not be useful in your case, but it was very helpful to me. A very good Walgreen's brand glucometer is only $20.
18. Get a blood pressure cuff and start checking your own bp at home. Look for patterns there as well.
19. Summarize test results for your doctor (PCP, endocrinologist, or even surgeon). Create a simple table that shows your relevant test results over time.
20. Collect photos that illustrate how your physical appearance has changed.
21. When researching surgeons, learn as much as you can about the different techniques and approaches. Some may seem similar, but there are differences that are important to understand.
22. When interviewing surgeons, the following questions may be helpful(mostly pituitary focused):
a. How will you approach the tumor?
b. What instruments are used? Endoscope? Microscope? Both?
c. What incisions are made?
d. Do you need to clear any kind of path within the nasal or sinus area for your instruments? How will you do that?
e. What stitches will I have?
f. Do you use a "fat plug"?
g. Do you use a lumbar drain?
h. Will there be any nasal packing?
i. How will my head be immobilized during surgery? (Is a "halo" used?)
j. Do you use Doppler to localize the carotid arteries? (not necessary in fully endoscopic procedure as I understand it)
k. Describe your approach to locating any tumor seen on the MRI, and what you will do to find any other tumors that may be in, on, or around the gland.
l. Under what circumstances might you find it necessary to remove either part of the pituitary gland, or all of it?
m. How many of these procedures have you done?
n. How long have you been performing this particular procedure?
o. What are some typical complications that occur with this procedure? How do you manage those complications?
p. Based on my MRI, is there anything in particular that might suggest greater risk of diabetes insipidus or other long term complications with this surgery?
q. Tell me what to expect in terms of post-operative pain and how it will be managed.
r. Is an ICU stay typically necessary?
s. How long can I expect to stay in the hospital?
t. Do you give steroids intra-operatively?
u. When do you test post-op cortisol levels? What is the cortisol replacement therapy protocol? If my endocrinologist is out of state, who will be monitoring that part of my testing and prescribing cortisol replacement as necessary?
v. When can I travel to return home?
w. What restrictions will I have once discharged? (Lifting, noseblowing, how I sleep, driving, exercise, etc)
x. How do I contact you if I should have any problems or concerns once discharged?
y. How will you communicate with my endocrinologist regarding the results of my surgery?
z. What is your protocol for following up with patients post-operatively?
aa. What is your rate of post-operative sinus infection?
bb. What is your rate of post-operative diabetes insipidus, both temporary and long-term?
23. These questions for your endocrinologist may be helpful once surgery is planned:
a. How will you determine my post-op cortisol replacement needs?
b. At what point will you recommend that I begin tapering my dose? What are your guidelines for each step in the weaning process?
c. Based on my case and your experience with other Cushings patients, what might I experience during the recovery period? How long before I feel "better"? What restrictions will I have?
d. When and how will you determine if other pituitary functions should be tested post-op? How will you test other pituitary functions post-op?
e. Do you provide a prescription for emergency injectible hydrocortisone?
f. Do you provide written instructions I may carry for Emergency Room staff in the event that I have an adrenal crisis?
g. How long should I expect to be off work?
h. How will you follow up with me post-op?
i. What is the best way to reach you if I have any questions or concerns after surgery?
24. Participate on the Cushings Boards to support yourself and others through the Cushings diagnosis and treatment journey. (You'll also make some new friends.)