Saturday, December 5, 2009


Sue left me a message on my favorite Tips to Get Diagnosed Quickly post. She asks such good questions that I decided to answer them here. Oh, and the babe was sleeping at midnight, so I had time =).
Thanks for the encouragement to be proactive. I have a twenty year old daughter that had a MRI for headaches three months ago. They found an enlarged pituitary gland. Now, three months later it is a recognizable pituitary adenoma 5mm x5mm x8mm. Her doctor keeps reassuring me that it is so tiny that it is probably not the cause of her headaches and that it is no problem that we can't get in to the USC specialist for seven more weeks. I recognize many signs of Cushing's including weight gain in the last six months, new vertical purple stretch marks on her abdomen, complaints of bruises, acne, boils and even an insect bite infected with staph, Also she has constant vaginal yeast infections, a sinus infection diagnosed by the MRI, apathy, and memory problems. My daughter has Asperger Syndrome and she rarely expresses her emotional or physical feelings, so this is somewhat like pieces of a puzzle coming together. Do you or anyone else have advice on waiting to see the so called "best Endocrinologist" as we were referred to by our doc? Do all the endocrinologists mentioned on the site require recommendations from primaries? My PPO does not. Again, thanks for your encouragement to be proactive - when I speak to my daughter's doctor I feel she is trying to assure me it is nothing to worry about. I want to be fully informed and do what is best for my daughter. Thank you for sharing all of your experience so willingly, I am sure you are helping many.

Sue, I'm so glad the words I wrote 18 months ago are helping people still today. I'm sorry your daughter may have Cushing's. No one wants to hear that. This is a big deal. Don't let them minimize it. Be an informed, persistent, and tenacious advocate for your daughter. She is sick and needs your help. Those symptoms sound like Cushing's symptoms. Worry, ok, but pack enough information into your brain that you can nudge them along your way.

One of my favorite posts about the urgency to get treated comes from the former founder of the Pituitary Network Association. I call it, Cardiac Paddles to the Chest .

That pituitary tumor is pretty large. Mine was a microadenoma at only 3 millimeters. A macroadenoma is larger than 10 mm or 1 cm. Both sizes can cause headaches for some patients. Plus, it seems that the pituitary tumors resected during surgery end up larger than the MRI shows.

Do not wait 7 weeks, unless you try all these things:

1. ASK DOCTOR STAFF TO HELP YOU GET AN APPOINTMENT WITH THE SPECIALIST. Ask your doc to call best Endo doc directly for the appt. Staff could try first. Tell them you need their help. Fake apologize for being a worry-wart mom. Go in person, and offer to wait in waiting room until they do it =). Ask that doc 1 fax all clinic notes, labs, and radiology/MRI reports to doc 2 in advance of appt.

2. FIND AN EXPERT. Check these websites for helpful lists of doctors familiar with the treatment of Cushing's. Is there another specialist nearby? Don't put all of your eggs in one doctor basket. Work the system.

* Cushing's Help & Support. On its message boards, we Cushies discuss our favorites under Doctors and Hospitals.

* Pituitary Network Association

* Cushing's Support & Research Foundation

Make an appointment with another doctor if you can get in before 7 wks. Keep other recommended "best endo" appointment. You will feel better for not waiting, and you will arm yourself with more info with a 2nd opinion. Be sure to call your PPO insurance directly to see if doc 2 is in network. Most do not require a referral. Be sure to ask the office staff.

3. TESTING FOR CUSHING'S. Can you tell me what testing your daughter has done for Cushing's? What came back abnormal or high? If no testing besides the MRI was done, ask your referring doc to order some for her while you wait to see the "best endo." Then that doctor can review the results at the first appointment, saving valuable time and giving you a feeling of forward momentum.
Request these tests to diagnose Cushing's
For a good overall assessment of Cushing’s, be sure you leave your doctor's office with:

1) copies of all of your lab results to date;

2) four lab orders for each of the following tests, to test as you see fit, according to your symptoms:

* 24 hour urinary free cortisol (UFCs): normal range is 0-50. diagnostic is over 50.

* midnight salivary cortisol (from your spit): normal range is 0-0.17. diagnostic is 5 and over.

* midnight cortisol serum(from blood draw): normal range is near 0 at this time. suggestive is over 5. diagnostic is 7.5 and over.

* cortisol serum tests (from blood draw). Lab samples must be taken at 8 am and/or 4 pm. If they are not taken at this time, the results do not count.

* random ACTH plasma (from blood draw). Many Cushing's patients see very high levels at 4 am, don't know why. Normal normal range is 5-27. diagnostic is over 48, over 100 really turns the docs on! These lab samples must be handled very carefully to get an accurate reading. I will post a link to the proper handling when I can find one.

In addition, there are many tests that you can ask a doctor to order for an overall hormone assessment. Since the pituitary is the master gland, controlling the release of all hormones in the body, a tumor can cause the malfunction of other hormones produced in other organs.

These tests usually include:

* thyroid panel (TSH, T4, T3)
* pituitary panel (LH, FSH, prolactin, IGF-1 as measured through the liver from growth hormone in the pituitary)
* hormone panel (estradiol, testerosterone, DHEA, etc)
* vitamin B12, vitamin D, ferritin — many Cushies have very low levels of these three. If ferritin is low, it explains hair loss.

Oregon Health and Science Center in Portland, OR shares these suggestions when working with your doctors.

Others may suggest that you ask for other tests. I didn’t feel comfortable asking for specialized tests before I got the basics ones first. I felt that if I had the first battery of tests done and something came back abnormal, then I would ask for others. This approach worked well for me.

4. GET SMARTER. Just like in chess and billiards, winners have several moves in mind before making their current move. Adopt the same concept. Use the wait time to research Cushing's and the next steps. For example, do they recommend an IPSS, which confirms the pituitary as the source of ACTH excess? The test is invasive but proves the tumor needs to come out and it is not just an incidentaloma (real word!). Many patients I know get this test. It is important info for the endo and neurosurgeon, but for you, your daughter, and your peace of mind. My IPSS results were 78 times the normal limit (3 times normal is diagnostic), and this test convinced my neurosurgeon to move quickly.

If I can help, please contact me again. I am trying to make more time for this blog and the people who find me--out in cyberspace. I take my role as advocate seriously.

Peace, joy, and hope to you and your family.
--moxie melissa