Help Yourself, Part 2

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Tips from LindaP

From Tips from LindaP

Things I've learned and wanted to share

By LindaP, with a little help from other Cushing's Message Board members. This is a continuing list, if you want to share.

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 Cushing's journey.

Linda


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
    • iii. Imaging
  • 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:

  • 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 insipidous 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 insipidous, 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 injectable 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.)

Tips from Melissa

From Tips from Melissa


LEARN A BIG LESSON EARLY. Be proactive no matter what. For every day you waste, you are sick another two weeks due to scheduling, weekends, test run time, rescheduled appts, etc. Nobody--no doctor--cares more for you than you. Take care of yourself, and take care of business.

HOW TO DEAL WITH DOCTORS AND INSURANCE

  • CHECK WITH YOUR INSURANCE

Do you have a HMO where you need a referral to go to a new doctor or Do you have a PPO where you can go to any doctor you want? If you have a PPO, call the doctor to see if s/he is an IN NETWORK PROVIDER for your insurance? Also, call your insurance company to ensure that the doctor is an IN NETWORK PROVIDER. If you have an HMO, call to set up an appointment with your primary care doctor and have the name of the endocrinologist or Cushing’s specialist in hand so you can get the referral (see below on how to get ready for the doctor’s appointment).

  • IF YOU HAVE AN HMO, SWITCH TO A PPO I know this requires a higher monthly premium. I know we Cushies are already pressed for money with all the traveling we do for specialized care. However, I must tell that having a PPO was a major reason why I got diagnosed so quickly. I guided my own care. I chose doctors, I set up appointments, and I powered through. Had I had any one doctor serve as a gate keeper I would have been toast. Had I had to wait for said gate keeper's staff to look up referrals and give me papers and get through all that hassle, I would have been toast.

Do yourself a favor: pay up and get a PPO. You are worth it. What's more important than your health? If you have an HMO, know when your company or your spouse's company open enrollment period is. Mark it on your calendar. You can change from an HMO to PPO usually only at this time. Call your HR representative, and he/she can guide you through the process.

  • BIGGEST TIP OF ALL: DO THINGS CONCURRENTLY! If you are stuck waiting, ask yourself, "What else can I do to move this along? What else can I be doing in the mean time?"
    • Schedule all the doctors appointments NOW. If you have an HMO, schedule an appointment with that office, then schedule an appt with the specialist for shortly thereafter. That way, when you get the referral in hand, you will not have to wait very long for the next appointment. Some offices don’t like to do it without a referral, but if you ask them to set an appointment now, you promise to fax the referral as soon as possible. Then, you get the appointment… and then get the referral to them when you can. Doesn’t matter after that, because you already have your position in line… an appointment. As a general rule, make more appointments than you need, and then cancel if you find you don't need them. This will keep you from spending weeks and months waiting for doctors' appointments unnecessarily. It can take up to three months for new patient appointments with endocrinologists. Cut down your wait time.

GET YOURSELF TO A SPECIALIST

If you drove a Bentley, would you take it in for repairs to a gas station mechanic? Of course not. You would take that car to someone who understands it, respects it.

Cushing's is very rarely diagnosed, and doctors don't know what to do. Even if they act like they do. Some of us can lead our docs around for a while, squeezing lab orders out when we can, but eventually, most of us peel off and see Cushing's specialists. Check this website for one near you. On this message board, check out the topics under Doctors and Hospitals. We discuss a lot of the favorite ones there. Also, try the Pituitary Network Association site for docs, too.

  • BE A GOOD PATIENT. DO YOUR HOMEWORK.

KNOW THAT NOT ALL CUSHING'S PATIENTS HAVE THE SAME SYMPTOMS OR LOOK THE SAME

There is a classic, textbook look to Cushing's patients. Not all of us fit that bill. Don't let your doctor pigeon hole you if you don't have ..., ..., ... .

Everyone's symptoms of high cortisol times and low cortisol times differ.

My symptoms during a cortisol high include: 1) acid reflux (I NEVER had this before June of 2007) 2) pimples in the hair line 3) feeling normal/no muscle or joint pain 4) soreness/pain in my buffalo hump 5) usually on my period.

I DO NOT HAVE redness in the cheeks (I am half Filipino, so it has a lot of brown to break through!) or a lot of facial hair (only lip and eyebrows). My limbs are not super skinny. I don't have diabetes, but I was only recently diagnosed within insulin resistance in 12/07. My moon face only started to come on in the past 2 months (I feel I have had Cushing's at least since 1995, maybe since the onset of my menses). Yet I still have high cortisol and ACTH results and a 5mm spot on my pituitary.

Cushies are like snowflakes... none of us are exactly the same. Some people have higher biochemical data/lab values than me, but they don't have a tumor showing. Some have a tumor showing but haven't had diagnostic results yet. It is crazy to detect what each of us should have or will have, because we are all different. To get an understanding of highs and lows, please visit KateG's post about cyclical Cushies for help.


RESPECT THE MASTER: UNDERSTANDING THE PITUITARY GLAND

The pituitary is the master gland. It secretes nine hormones vital for every day functions--7 anterior (front) and 2 posterior (back). If you have a pituitary tumor, it can affect the production of these other hormones.

Since TSH or thyroid stimulating hormone is one of these 9 hormones, many of us have thyroid problems. In fact, I have low thyroid, low FSH, low LH, low IGF-1, normal prolactin, uber high ACTH.

I finally saw a doctor for low thyroid 3 years ago, and this year I finally realized that the meds were not working and I felt worse. That led me to find Cushing's online.

I just search Google and found a FANTASTIC pituitary explanation--wish I had it 7 months ago. Link to pretty cool description of pituitary hormones.

REQUEST THESE TESTS TO DIAGNOSE CUSHING’S

There are many tests that you can ask a doctor to order to give you an overall hormone assessment. These usually include a thyroid panel, a pituitary panel (LH, FSH, prolactin, IGF-1 as measured through the liver from growth hormone in the pituitary), and other hormones (estradiol, testerosterone, DHEA, etc), and vitamins (B12, D, ferritin—many Cushies have very low levels of these three, and if ferritin is low, it explains hair loss).

Others may suggest that you ask for a whole host of 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.

For a good overall assessment of Cushing’s, be sure you leave your doctor's office with:

  • copies of all of your lab results to date (then you can post them here)
  • four lab orders for each of the following tests, to test as you see fit, according to your symptoms:
    • 24 urinary free cortisol tests (UFCs), normal range is 0-50. diagnostic is over 50.
    • midnight salivary cortisol tests, normal range is 0-0.17. diagnostic is 5 and over.
    • midnight cortisol serum tests (from blood draw), normal range is near 0 at this time. suggestive is over 5. diagnostic is 7.5 and over.
    • random ACTH plasma tests (from blood draw) (many of ours are highest at 4 am, don't know why), normal range is 5-27. diagnostic is over 48, over 100 really turns the docs on!

UNDERSTAND THE TESTS YOU ARE REQUESTING

Do a search on the tests above PRIOR to your doctor's appointment. Understand what you are asking for. This will give you the quick and dirty.

Start researching medical journals and print articles to share with your doctor. Check out this link that our own Robin/staticnrg put together for us: Click here for medical articles.

Read these boards voraciously and understand cyclical cushing's, general symptoms of highs and lows (varies by person, but there are generalities).

Read people's signatures below their posts. You will learn so much from this simple act. It has helped me tremendously. Look at timelines. Look at test results... what do people get excited over? WHY? Click here to see all the signatures in one place.


You will need to be the new expert on Cushing's. Dig in and arm yourself with info. And don't take no for an answer. Getting a diagnosis of Cushing's is a hurry-up-and-wait game. For every day you waste, you will be sick for two weeks longer. Stay active. Get moving. Get better.

Good luck to you, and I hope to see you come back often, replying to posts and asking questions. People hear have taught me all I know about Cushing's, and after six months, I can say that is A LOT!


YOU MUST BE PREPARED FOR EVERY DOCTOR'S APPOINTMENT.

Think of this as a courtroom.

Your diagnosis is the case to be tried. The doctor is the prosecuting attorney. You are the defending attorney as well as the defendant. The doctor also serves as the judge. Sometimes it feels like your friends and family serve as the jury. If you lose, do you get the death penalty...?


You must be ready. You must know your history, your case, your symptoms, your facts. If you don't know or can't understand your case history--and you lived it--how can you expect a doctor in 15 minutes to understand?

Don't get dismissed by your doctor. If you get yourself ready at the beginning of this journey, you will find yourself only updating your information and reprinting it from the computer. This will save you from having to remember all the little things with this Cushie brain of ours.

Get a big Big BIG three ring binder and file all your paperwork together. Memorize your numbers and lab results. They are your new mutiplication tables. I put my lab results in order by date, with the most recent on top. This is the simplest because some doctors order tests that cross many categories, so I can't put them behind tabs like that. I also ask the doc's assistant for a copy of the lab order before I leave the check-out desk at the office. I have never been denied. I go to the lab and get the blood drawn. I take my copy of the lab order home and look up the tests that were ordered, ask this board about it, so that I am ready to discuss results with my doctor at the next appointment, and I can guide him to the next step, in case he doesn't know (this is unfortunately more often than is just).


Have you considered how you will convince the doctor to do what you want him/her to do at your appointment? May I suggest a few things?

1) list of your symptoms. i had over 40 symptoms that totally seemed unrelated to me but indeed were in fact related in one way or another to Cushing's and/or other related hormone problems.

2) weight and blood pressure history. i called all my old doctors and got this info. I have this back 10 years now, and it is clear how much weight I have gained and how my bp has gone up, up, up!

3) amenorrhea summary. list month by month noting if i had a period or if i did not.

4) a list of your current medicine. name, dose, how many a day, reason

5) before and after photos, including dates (even better to use the date feature on the camera to show the date on each photo). Get a small photo album/brag book and put the photos in order. go back as far as you can to show how you used to look. This was the most difficult part for me... not all the blood draws, not being still in the MRI tubes for over an hour with a bad back, not the IPSS while awake. Gathering my photos showed me a life that, while smiling, was filled with insecurity and self-hatred over my body, even when I knew not to think like that. These photos symbolized years of being insecure and wondering if that meant unlovable. So while I know it is horrific to see yourself in those days, know that now you may be on your way to changing your life and finally feeling better. In fact, I have much more forgiveness for myself than I could have ever found. I attribute that to my Cushing's diagnosis.

6) photos of my stretch marks. It is best if you set the date feature on your digital camera to show the date on each photo. With old photos, just type out the Month and Year on a Word document, and then cut the page into little slivers to slide into your brag book.

7) photos of my buffalo hump, including dates. I took photos every two weeks, facing different directions (left and right) in different clothes, in different rooms to show that the hump is not a result of bad shadows/lighting, etc (even better to use the date feature to show the date on each photo)

8) lab results and medical records. i also got these from all of my past doctors back to 1995. it shows that I am not fat and diabetic (normal glucose for years now), and allows them to see that I am/was healthy overall before now. This project is easier than you think. I made a list of all my doctors and kept them in chronological order. I moved around a lot in my 20s so I had many many doctors. Then, I took to the internet and searched for the doctor online. I called each office and asked for their fax number and who is in charge of medical records. I then faxed a letter I wrote to each doctor. I will paste that letter below in new post. I got my records mailed within 7-21 days. No hassle, and nobody charged me any money for them, which they can, per page, according to HIPAA. For my weight and blood pressure summary, I wrote *taken at doctor's offices* in the footer. For the summary of my lab results, I wrote "This summary is comprised from medical records from many doctors' offices. The original lab results are available upon request" in the footer.

9) medical literature. bring copies with you that say that the best testing is midnight testing (particularly blood draws for cortisol serum and ACTH plasma, plus midnight salivary cortisol tests). also find articles on cyclical cushings. they have been posted all around this site on the boards. Check the old threads for more info.

10) never tell a doctor, well i read on the internet or message board that... They will immediately dismiss you and us. Instead say, "according to the medical literature, most endocrinologists say that midnight salivary cortisol serum tests as well as midnight cortisol blood serum tests can determine if a person has Cushing's even better than a 24 hour urinary free cortisol test." I have learned that I have had the greatest success when I spoke to a doctor in medical terminology. I wouldn't say, I pee too much. I would say, "I think I may suffer from polyuria as I have UFCs with over 3,500 mL per collection." I believe docs take you seriously if you sound like you know what you're talking about. And let's face it, you do, because you followed my steps above, right?!

10) your desire to get well. you know your own body. DO NOT LET THESE DOCTORS KEEP YOU DOWN. Do not take no for an answer. If the doctor won't order a test, tell them you will go see another doctor. Tell them that this disease didn't earn a spot on the Discovery Health's show "Mystery Diagnosis" if diagnosing it were so easy.

11) a healthy mindset/attitude. you have the right to be healthy and happy. Put yourself first. Start using your frustration over this and get mad about how hard this is. Doctors are not untouchable medical gods (recent study show they talk about themselves during *your* appointment!). The more people they face letting them know that they are not the end all be all, the better off the next patients will be. Tell them that you disagree. Show them the medical literature. Challenge their authority. They are not more important than you, and their opinions are not more important than yours, the patient. Trust your instincts. Most sick people say this is what saved their lives. If you can't make it work, then tell the doc YOU'RE FIRED (Trump style), and get on with your life of getting better.

As an aside, I look forward to writing sweet little you-were-wrong-and-I-was-right letters to all previous doctors (10+), pointing out the symptoms they missed and including photos so they remember me. All said in a nice but direct way :) ... all done in an attempt to make the road easier for those who grace those exam tables after us.

Take care of you. First and foremost. Melissa


Take care of your body

It is always important to follow your doctor’s instructions regarding diet and exercise. There are certain nutritional guidelines that have been developed specifically for people with Cushing’s disease.

Some of the dietary tips include

  • Beware of too much sodium, which can affect your blood pressure, cause swelling, and make you gain weight1
  • Be sure to get enough daily calcium because people with excess cortisol may often develop osteoporosis(fragile bones)1,2
    • Calcium and vitamin D can be important in strengthening bones
  • Try to keep cholesterol in check because Cushing's disease can cause cholesterol levels to go up
    • Try limiting your intake of fatty foods; eat dairy products (such as milk and cheese) that are low in fat

Consider dietary changes if you have high blood sugar (called hyperglycemia) because excess cortisol can cause blood sugar levels to increase.

As you can see, there are a number of ways to help you take control of your life if you are living with Cushing’s disease. Be sure to talk to your doctor about what you can do to start to gain control of your life, body and emotions.

Taking care of your nutritional health

Getting proper nutrition through a well-balanced diet is very important for people living with Cushing’s disease. Because this condition can affect how your body processes some foods, it’s a good idea to consult with your doctor or a registered dietitian, who can advise you on your diet.

Here are a few suggestions on things you can do to have a healthier diet

Beware of too much sodium

Excess sodium can affect your blood pressure, cause swelling, and make you gain weight. So, try to follow these tips:

  • Don’t add extra salt to your food
  • Avoid food that is prepared with added salt

Be sure to get enough daily calcium and vitamin D

People with Cushing’s disease often develop osteoporosis (fragile bones). Calcium and vitamin D can be important in strengthening bones.

Try to keep cholesterol in check

Cushing’s disease can cause cholesterol levels to go up. So you should try to limit your intake of fatty foods and eat dairy products (such as milk and cheese) that are low in fat.

High blood sugar may require special dietary changes

Cushing’s disease can also cause high blood sugar levels (called hyperglycemia). If this happens, special medicine and a special diet may be needed.

These are just some of the dietary tips for people with Cushing’s disease. Talk to your doctor or a registered dietitian to find out what’s right for you.