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:

a. Spreadsheet that summarizes most relevant test resultsb. 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.)

From the message boards and and MaryO’s personal experience

More about Kate

• MRI Films (originals plus a CD)
• updated medical records. Anyone who goes for surgery needs to have a back-up set of records with them. Some doctors like a list all of labs on a spreadsheet with dates, results, etc. on them to make it easier for them to go through. However, Most doctors want to see the actual test results. Have both forms, if possible.
• nightgowns
• robe, slippers
• extra pillow, if needed
• microfleece blanket
• book or magazines Adrenal people: you may have trouble resting things like books on your stomach post-op so magazines or paperbacks are a better choice than hard cover
• Sudoku / crossword puzzles
• shampoo, conditioner
• comb, brush
• toothbrush, toothpaste, deodorant
• lip balm
• lotion
• Puffs Plus with lotion
• underwear
• maxi pad/tampons
• cool max sports injury gel pack
• medications Note: Check with your doctor – the hospital may not allow you to take meds from outside.
• Crisis letter
• medic alert bracelet
• an iPod/charger or some CD’s and small player
• pants with a loose elastic waist are good, or a long, loose dress.
• cell phone and charger Note: Check with the hospital. Many do not allow the use of cellphones.
• list of cell phone numbers of people to call from the hospital
• change of clothes to wear home. Adrenal people: pants with a loose elastic waist are good, or a long, loose dress.
• digital recorder so that you can record any instructions if need be after surgery
• huge, cuddly teddy bear
• mints for dry mouth
• Buy a COOL GEL SPORTS INJURY PACK (Walmart or Walgreens) and wrap it around your head and back of your neck when you have a head-ache or are feeling bad. The cool settles your tummy, relieves the pain and swelling in the tissue around the head and neck that is irritated from surgery.
• Take advantage of the moisture-ventilator that they give you in ICU and be sure to request or demand that they let you keep it after you get to your room. It relieved the dry pain that my nose had and made the whole thing WAY less painful than others have said it was for them. ALSO…if you buy one of those $30 cool water humidifiers from Walmart/Target for you upon your return home…you will LOVE the moisture it gives you and it will make your nose feel MUCH better, MUCH faster!
• New! Autumn adds: “Can I add a couple items to the list that turned out to be LIFE-SAVERS for me? My husband went to Wal-mart and got a gel ice pack that is made to wrap around an arm or leg for sports injuries…The gel pack goes in the freezer and then in …a sleeve that velcros. It is the perfect size to go around your head and it is sooooo helpful for headaches and swelling! LOVED IT and used it for a couple months after surgery!!!! A great $10.00 purchase!”

Optional, if used:

• nightguard for teeth
• cpap and oracle mask
• Growth hormone and supplies
• camera
• deck of cards

Information about this survey and your consent to participate

Patients with Cushing’s syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing’s syndrome. We want to learn more about the patients’ experience during the post-surgical recovery phase with particular reference to quality of life. We are inviting patients like you who have had surgical treatment to complete the survey. Your responses will be gathered anonymously and will be treated confidentially; we hope to use them in a publication so that other physicians can learn about these issues.

Please kindly complete the following online questionnaire which is comprised of approximately 27 questions and should take around 15 minutes.

Take the survey here: http://csrecoverypatient.nichd.nih.gov/cssurvey/patientaccept.html

Many of the people who post on the message boards suffer from other diseases, as well as Cushing’s. These links help to provide some information about these diseases.

~A ~

Acanthosis nigricans
This Topic on the Message Boards.

Acromegaly
This Topic on the Message Boards.

Addison’s Disease
This Topic on the Message Boards.

Adrenoleukodystrophy
This Topic on the Message Boards.

~B ~

Barrett’s esophagus

~C ~

Carney Complex
This Topic on the Message Boards.

Central Serous Retinopathy
This Topic on the Message Boards.

Congenital Adrenal Hyperplasia (CAH)
This Topic on the Message Boards.

Conn’s Syndrome
This Topic on the Message Boards.

Craniopharyngioma
This Topic on the Message Boards.

~D ~

Diabetes insipidus
This Topic on the Message Boards.

~E ~

Ectopic ACTH Syndrome
This Topic on the Message Boards.

Empty Sella
This Topic on the Message Boards.

~F ~

Fibromyalgia
This Topic on the Message Boards.

~G ~

Gigantism
This Topic on the Message Boards.

Growth Hormone (hGH)
This Topic on the Message Boards.

~H ~

Hirsuitism
This Topic on the Message Boards.

Hyperprolactinemia
This Topic on the Message Boards.

Hyperthyroidism
This Topic on the Message Boards.

Hypoalderostonism
This Topic on the Message Boards.

Hypocalcemia
This Topic on the Message Boards

Hypopituitarism
This Topic on the Message Boards.

Hypothyroidism
This Topic on the Message Boards.

~I ~

Insulin Resistance
This Topic on the Message Boards.

~K ~

Kidney Disease
This Topic on the Message Boards.

~L ~

Lyme Disease
This Topic on the Message Boards.

~M ~

Madelung’s Disease
This Topic on the Message Boards.

Menopause
This Topic on the Message Boards.

MEN Type 1
This Topic on the Message Boards.

Myasthenia Gravis
This Topic on the Message Boards.

~N ~

Nelson’s Syndrome
This Topic on the Message Boards.

~O ~

Osteopenia
This Topic on the Message Boards.

Osteoporosis
This Topic on the Message Boards.

~P ~

Panhypopituitarism
This Topic on the Message Boards.

PCOS
This Topic on the Message Boards.

• PCOS: Polycystic Ovary Syndrome
• From Health Talk: Polycystic Ovarian Syndrome
• High Prolactin Levels in PCOS Women
• Low Carbohydrate PCOS Diets: Hype, Hoax or Cure?
• PCOS: Antagon, A New Infertility Drug
• PCOS: Clomid and Infertility
• PCOS Study in Virginia
• PCOS Symptoms

Perimenopause
This Topic on the Message Boards.

Pheochromocytoma
This Topic on the Message Boards.

Pituitary dwarfism
This Topic on the Message Boards.

Premature menopause
This Topic on the Message Boards.

Primary pigmented nodular adrenocortical disease (PPNAD)
This topic on the Message Boards

Prolactinoma
This Topic on the Message Boards.

Pseudo Cushing’s
This Topic on the Message Boards

~R ~

Rathke’s cleft cyst
This Topic on the Message Boards.

ROHHAD (Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood)
This Topic on the Message Boards

~S ~

Sheehan’s Syndrome
This Topic on the Message Boards.

Stein-Leventhal Syndrome
This Topic on the Message Boards.

~T ~

Thymoma
This Topic on the Message Boards.

Thyroid Gland Disorders
This Topic on the Message Boards.

Turner’s Syndrome
This Topic on the Message Boards.

~V ~

Von Hippel-Lindau disease
This Topic on the Message Boards.

~Z ~

Zollinger-Ellison Syndrome

Also in the Cushings-Help family of websites

• The original site, founded in July, 2000. http://cushings-help.com
• http://www.cushings-support.com
• http://www.cushie.info
• Soon to be upgraded Cushing’s Help Organization site
• The message boards, founded in September, 2000 http://cushings.invisionzone.com/index.php
• New Wiki http://www.cushiewiki.com
• A site to host images and files http://www.cushingsonline.com
• Cushing’s Disease/Syndrome Knol
• http://www.addisons-help.com
• Addison’s Disease Knol
• and various Cushing’s/Adrenal blogs
  • Cushing’s Help on blogspot.com
  • Cushie Boggers on blogspot.com
  • Addison’s Help on blogspot.com
  • Cushing’s Help on Posterous.com
  • Cushing’s Help Podcasts on Posterous.com
  • Cushing’s Group on Posterous.com
  • Cushing’s Help on cushie.info

I often forget to take my meds.  And other days, I can’t remember if I took them or not.

So, here’s another great (FREE!) iPhone App:  Rxmindme

From their features list at http://www.rxmind.me/Features.aspx

RxmindMe has a growing feature set. We keep adding new things to help fellow pill takers monitor their medications, track what they take, and view their history of their medications.

We believe compliance is important for anyone taking medications, that is what RxmindMe aims to do, help you stay healthy and safe. No matter what you call your medications – pills, prescriptions, medications, or vitamins, we have the App to track them all.

RxmindMe allows you to use any application and receive reminders. We utilize iOS 4′s Local Notifications instead of the old Push Notifications. With Local Notifications, you need no network connection. Meaning you’ll receive your reminders anywhere at any time.

The home screen of RxmindMe gives you all your reminders for the day in once place. It allows you to easily identify which reminders you have missed, which reminders are coming up, and which reminders you have already taken.

From this home screen, you will have the option to create snoozes, add as needed reminders, and add prescriptions you take randomly throughout the day – like Asprin.

RxmindMe allows you to create nine different types of reminders

• Daily reminders, ones that can occur on any day of the week
• Weekly reminders, like daily reminders, but you can set weekly repeat intervals
• Monthly reminders, monthly reminders that occur on a specific date during the month
• Monthly reminders, monthly reminders that occur on a specific day of the week of a specific week of the month – for example, the last Friday of the month
• Our new Every “X” Days reminder, repeats every few days
• Hourly reminders for specific hourly intervals
• As needed reminders which are taken infrequently
• On specific dates, reminders that you want to occur on specific dates – for example the 28th of November

Now with the ability for devices with cameras to take photos of your prescriptions, you can see visually what you are supposed to take.

RxmindMe will keep and store your photos for your medicates, then it will display them along your reminders.RxmindMe now includes the up to date FDA database. You can search for prescriptions in RxmindMe, select the one you want, and it will auto populate the details for you. No more entering the units and name yourself!

No more forgotten meds for me!

I just found a new iPhone app today which looks pretty good. You can add family members and send the info to another phone so everyone has the info they need. It’s only $.99 in the iTunes store:

It’s called Capzule PHR and the website is http://capzule.com/phr/ with help files at http://capzule.com/phr/phrhowto.html

There’s a free version to try called Capzule PHR Free

Features

* Push Notification to alert appointments
* Data Visualization via Interactive Timeline
* Edit records and upload files from Desktop/Laptop
* Record conditions and allergies
* Store doctor appointments
* Enter medications
* Email summary and graphs
* Print or download summary from Desktop/Laptop
* Maintain immunization records
* Enter vitals in Metric or Standard units
* Analyze line graphs of vitals and lab results
* Keep family, social, and medical history together
* Create custom health screening templates
* Enter notes, upload results and files
* Manage physician and insurance information
* Reset password when password is lost
* Categorize Notes and Attachments
* Email flowsheet data in CSV format along with graphs
* Email Summary with graphs embedded
* Backup and Restore from Desktop/Laptop
* Export CSV data from Desktop/Laptop
* Email documents
* Add files from other Apps (iOS 3.2+)
* Summary Reporting Filter

I found this article especially interesting.  This question was asked of a group of endos at an NIH conference a few years ago – if you saw someone on the street who looked like they had symptoms of fill-in-the disease, would you suggest that they see a doctor.  The general answer was no.  No surprise there.

Patients, if you see someone who looks like s/he has Cushing’s, give them a discrete card.

Spread The Word! Cushing’s Pocket Reference

Robin Writes:

This has been a concern of mine for some time. Your post spurred me on to do something I’ve been meaning to do. I’ve designed something you can print that will fit on the business cards you can buy just about anywhere (Wal-mart included). You can also print on stiff paper and cut with a paper cutter or scissors. I’ve done a front and a back.

Here are the links:

• Front: This card is being presented by a person who cares.
• Back (The same for everyone)

This Topic on the Message Boards

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And now, the article from http://www.guardian.co.uk/lifeandstyle/2009/nov/03/doctor-diagnosis-stranger:

Are doctors ever really off duty?

Which potentially serious symptoms would prompt them to stop and advise a stranger on a bus?

By Lucy Atkins

• 
  • Lucy Atkins
  • The Guardian, Tuesday 3 November 2009
    Article history

Passengers on a London bus. Photograph: David Levene

A Spanish woman of 55, Montse Ventura, recently met the woman she refers to as her “guardian angel” on a bus in Barcelona. The stranger – an endocrinologist – urged Ventura to have tests for acromegaly, a rare disorder involving an excesss of growth hormone, caused by a pituitary gland tumour. How had the doctor made this unsolicited diagnosis on public transport? Apparently the unusual, spade-like shape of Ventura’s hands was a dead giveaway.

But how many off-duty doctors would feel compelled to alert strangers to symptoms they spot? “If I was sitting next to someone on a bus with a melanoma, I’d say something or I wouldn’t sleep at night,” says GP Mary McCullins. “We all have a different threshold for interfering and you don’t want to terrify people, but this is the one thing I’d urge a total stranger to see a doctor about.” So what other symptoms might prompt a doctor to approach someone on the street?

Moon face

Cushing’s syndrome is another rare hormone disorder which can be caused by a non-cancerous tumour in the pituitary gland. “A puffy, rounded ‘moon face’ is one of the classic signs of Cushing’s,” says Dr Steve Field, chair of the Royal College of GPs. “In a social situation, I wouldn’t just say, ‘You’re dangerously ill’ but I’d try to elicit information and encourage them to see a doctor.”

Different-sized pupils

When one pupil is smaller than the other, perhaps with a drooping eyelid, it could be Horner’s syndrome, a condition caused when a lung tumour begins eating into the nerves in the neck. This can be the first obvious sign of the cancer. “I’d encourage someone to get this checked out,” says Dr Simon Smith, consultant in emergency medicine at the Oxford Radcliffe Hospitals Trust. “People often have an inkling that something’s wrong, and you might spur them to get help sooner.”

Clubbing fingers

Some people are born with club-shaped fingers, but if, over time, they become “drumstick-like”, this could signify serious problems such as lung tumours, chronic lung infections or congenital heart disease. “Because it happens gradually, some people disregard clubbing,” says Smith. “But I’d say something because it can be an important symptom in many serious illnesses.”

Lumpy eyelids

Whitish yellowy lumps around the eyelids can be a sign of high cholesterol, a major factor in heart disease. Sometimes you also get a yellow circle around the iris. “I would suggest they got a cholesterol test with these symptoms,” says Smith. “They can do something about it that could save their life.”

Suntan in unlikely places

A person with Addison’s disease, a rare but chronic condition brought about by the failure of the adrenal glands, may develop what looks like a deep tan, even in non sun-exposed areas such as the palms. Other symptoms (tiredness, dizziness) can be non-specific so the condition is often advanced by the time it is diagnosed. Addison’s is treatable with lifelong steroid replacement therapy. “If someone was saying they hadn’t been in the sun but had developed a tan, alarm bells would ring and I’d probably ask how they were feeling,” says McCullins.

Trench mouth

Putrid smelling breath – even if the teeth look perfect – can be a sign of acute necrotising periodontitis. “I’d be able to tell when someone walks through the door,” says dentist Laurie Powell. “But people become accustomed to it and don’t notice.” Untreated, the condition damages the bones and connective tissue in the jaw. It can also be a sign of other diseases such as diabetes or Aids.