REOCCURRENCE: Hard to know for sure

I wanted to take a minute to update y'all on my progress post op. There has been so much that happened.

First off, the best thing I can say is that I am happy that I am 6 months post-op. I survived 180 days of uncertainty. Many days, I didn't think I could do it. It PAINED me more than you could ever know for me to move through my days and nights, not knowing what will happen to me (and my family), and not being able to plan. I broke a lot of plans, I missed a few birthdays, and I didn't DO as I normally DO. But I tried. And for 2009, that has to be good enough.

I thank my husband, in-laws, and my mom and dad for helping me with the baby and even taking pretty good care of me.

You always know that I tell patients, regardless of their disease(s) but especially Cushies, to partner with their doctors in their health care. That's good to say and all, but I have an example today, so I wanted to share it with you. Hopefully, it will demonstrate HOW I communicate with my doctors (descriptive, detailed). I have been lucky to surround myself with a knowledgable and responsive and caring team of doctors (and their staff!), and I hope the very same for you.

Here is the email that I sent my endocrinologists in two different towns in an effort to keep them in the loop as far as my testing and planning. It serves as a quick recap.

Dear Drs. XX and XY,

Per our discussions at my appointments earlier this month, I committed myself to testing for Cushing's last week. I tested from Saturday to Sunday, and Monday to Wednesday. Those results should be on the way to your office by now. I ask that you and your staff keep an eye out for these tests results:

* 2 tests: 24-hour urinary free cortisol (UFC)
* 2 tests: 12am cortisol/ACTH at hospital
* 2 tests: 8am cortisol/ACTH
* 1 test: hemoglobin a1c

Would you please email me a copy of the test results after you review them?* I am sure you can understand my anxiety over these pending results... Could I be cured? Am I still suffering from Cushing's? This disease has turned my life upside, and I am hoping that it is finally over, but I am worried.

I know this may sound drastic, but I have been having several symptoms that make me think that my Cushing's may not be cured. Since my Cushing's is cyclical, the above tests may or may not show high results. These are my symptoms in the past three months:

* cortisol serum at 8am of 18 (20 is considered high post op)
* ACTH plasma at 8am of 29 (30 is considered high post op)
* low IGF-1 again (59, 66) after one normal 145 post op
* high blood pressure (140s/100 at several doc appts)
* high blood sugars (consistently 150 for several months, having never experienced high blood sugars before)
* sleep disturbances (difficulty going to sleep, up all night, waking at 4 am)
* inability to lose weight/fast weight gain in October/November
* more energy than most days
* acid reflux
* pain in my buffalo hump

If these test results are high, I want to work with Dr. "neurosurgeon" to schedule another pituitary surgery by the end of the month/insurance year. That will save me over $2000 because I would have to meet my deductible and maximum out of pocket expenses for my insurance.

My hope is that my hormones are still trying to get back in balance, and these symptoms will soon resolve themselves. However, I am a realist and I want to look at the data and make good decisions going forward.

I appreciate your help in battling Cushing's disease. I hope you can accommodate me as I try to work with all of my doctors and keep track of all of the pertinent information regarding my health*. Ugh. That's a hard job.

Sincerely,

Melissa
DOB: 11/--/19--
...-...-.... cell
http://cushingsmoxie.blogspot.com/

* Please take this as my consent to release these lab results to me, the patient, via email.

DEPRESSION: Are you more than just sad or down?

I was up late on the computer, organizing years of digital photos. While watching TV, I was intrigued by a commercial I saw. It was along the lines of, 'How do you know if your depression is as bad as you think it is? The voices pointed viewers in the direction of an online self-assessment that will determine the severity of depression, if any, and direct you to some help. It only took about 15 minutes to complete the WebMD Depression Health Check.

I found this particularly timely. If you've read this blog before, you might have picked up on my internal battle with depression: do I have it? Why can't I be grateful? How can I help people here if I'm down? etc, etc, etc. My depression symptoms from Cushing's went haywire with post-partum depression and even post-op pituitary surgery.

While taking the assessment, it asks if you are taking medication. I said, yes to taking a sertraline/zoloft generic for over a year without much improvement. It asks if you have any conditions that may worsen depression, AND CUSHING'S WAS LISTED. I couldn't believe my eyes! Somewhere in the medical community, SOMEONE IS MENTIONING AND EVEN RECOGNIZING CUSHING'S! I feel a little validated... even though I bet this is only one way for BigPharma to sink their teeth into us and not let us go. Regardless, I will take any help I can get. I feel completely at a loss as to what to do next to help myself, so I am interested to see what they suggest. In fact, to be helpful, I thought I would share what the final assessment showed, in a report for my doctor and me :)

Date: December 6,2009
Patient Name:

Dear Doctor,

Your patient recently completed the online Depression Health Check Health Check at WebMD. This tool is designed to help your patients become better informed about their conditions and compliant with your prescribed therapy. Full clinical references are provided at the end of this document

Impression
Dx major depressive disorder (MDD)
History
30-39yo female dx MDD >6 mo ago. Currently treating with Rx. Sx STB |||| with Tx.
Medications

* Zoloft (sertraline)

ROS positive

* Depressed mood (DSM major)
* Anhedonia (DSM major)
* Anxiety (DSM minor)
* Difficulty sleeping (DSM minor)
* Difficulty concentrating (DSM minor)
* Feelings of worthlessness or guilt (DSM minor)
* Increased fatigue or loss of energy (DSM minor)
* Weight change (DSM minor)
* Recurrent thoughts of death or suicide (DSM minor)

WebMD Healthcheck

You've been living with depression for some time, now. Unfortunately you haven't found a treatment regimen that works well for you. Perhaps it's time to talk to your doctor.

Ask About Treatment-Resistant Depression
If you have been on at least two different medications over the past six months or longer and you have taken the medication exactly as prescribed, it is possible that your depression could be "treatment resistant." If you think that might be the case for you, talk to your doctor, because treatment-resistant depression requires a different tactic. Sometimes what is thought to be treatment-resistant depression turns out to be bipolar disorder or another medical illness that has gone undiagnosed. Your doctor can help determine whether you need a different treatment plan or further evaluation.

Don't Get Discouraged
There are many options that can help you control your symptoms and take back your life. Trying different combinations of medication, talk therapy, and lifestyle changes may increase the likelihood that you'll achieve remission, which is the ultimate goal.

Give each combination a thorough try before deciding that it's not working for you. Long-term treatment for two years or more may be necessary. Keep a journal to track your symptoms and responses to medications and other therapies, so you can see your progress over time.

Be a Patient Patient
Medications that treat depression do not work overnight. When first started, many of these medications take at least two weeks to build up in your bloodstream to levels at which an effect may be noticed. If your medication is not working after two weeks, your doctor may increase the dosage, add or change to another medication, or do both to help control your symptoms. Talk therapy often is recommended, too.

Do Be Compliant
To make sure your medication is as effective as it can be in as few courses as possible, it's important that you be diligent about following your doctor's instructions. Take the medication in the amount prescribed and at the same time(s) every day. If you have questions about whether you are taking your medication(s) correctly, your doctor or pharmacist can review your treatment instructions with you and make any necessary adjustments that may make it easier for you.
If you work with your doctor and find a successful treatment plan, it is important to stay on that treatment plan for six to 12 months, even if you start to feel better after one month of treatment. Not following your doctors instructions can increase your risk of relapse. Relapse can be common once drug therapy is stopped or if symptoms persist. And two or more episodes of major depression increase the risks of another episode of depression. Talk with your doctor to determine how long you should stay on treatment.

How Others Are Responding to Treatment
Response to depression treatment can be very personal, but sometimes you just need to know you're not alone. See how your treatment response compares with others, like you, who have been diagnosed with depression, are currently treating their depression, and have recently taken this same WebMD Depression Health Check.

You reported that since starting your treatment that your depression symptoms are
slightly worse.

What Others On Prescription Treatment Are Reporting
Much improved (16%)
Slightly improved (40%)
No change (23%)
Slightly worse (13%)
Much worse (8%)

Be Careful With Supplements
Several types of dietary supplements are touted as mood enhancers, including St. John's wort, valerian, lavender, B vitamins, and omega-3 fatty acids, but there is mixed or little evidence about their effectiveness. In some cases, supplements can cause dangerous interactions with prescription medications. Be cautious, and be smart: Tell your doctor about everything that you are taking, even vitamins! Ask your doctor or pharmacist about any supplements.

Pain and Mood
A common occurrence with depression can be chronic pain (pain that persists over a long period of time). Research presented by Harvard Medical School showed that depressed patients have three times the average risk of developing chronic pain. But chronic pain also leads to depression, as the same research also showed that people with chronic pain have three times the average risk of developing anxiety disorders and depression.

Depression and pain are closely connected. One of the reasons researchers believe this connection exists is because two chemicals in the brain -- serotonin and norepinephrine, which brain cells use to communicate -- affect areas of the brain linked to both pain and mood. Just as being depressed may make people feel more intense pain, being in pain all the time may lead to mood swings, immobility, and isolation, further compounding the feelings of depression.
Depression may contribute to the discomfort associated with back pain, chest pain, constipation, diarrhea, dizziness, exhaustion, headaches, joint pain, lightheadedness, muscle pain, nausea, and stomach problems. Because those symptoms occur with many conditions, specifically linking them to depression is a difficult task for doctors.

If pain or depression symptoms persist, you should see your doctor. After a thorough evaluation, your doctor can diagnose the problem and offer treatment, such as prescription medications, physical therapy and/or talk therapy. A study recently published in the Journal of the American Medical Association shows that people with both depression and chronic pain (of the lower back, hip, or knee) significantly decreased their depression, pain severity, and disability if their treatment included 12 weeks of antidepressant therapy, six weeks of a pain self-management program, and six months of continued therapy.

Medical Illness and Depression
Sadness can be a state of mood, and that state could be normal for a person or abnormal, and therefore part of an illness. As an illness, depression is a collection of symptoms and signs that interferes with your normal day-to-day activities. Depression also can occur as part of an underlying bipolar disorder, or secondary to substance use or abuse, certain medications, dementia, or other medical conditions.

Sometimes it is difficult to determine if depression is the result of an existing medical condition -- or the cause of symptoms. A recent paper in the American Journal of Medicine states that depression is increased in most major chronic medical conditions, and explains that treatments for those conditions may increase the risk for depression, too.

Diabetes, Depression, and More
A review of more than a dozen studies reveals that although type 2 diabetes may increase the risk for depression, depression is a much stronger risk factor for type 2 diabetes. Another recent study shows that treating depression improved insulin resistance, which occurs when the body doesn't respond as well to insulin and increases the risks for type 2 diabetes. One link between the two conditions could be cortisol, a hormone related to stress, which is a known risk factor for depression. When stress increases, cortisol is released, and cortisol affects blood sugar metabolism.

Alzheimer's disease also is more likely to develop in people with memory problems who are depressed than it is in people with memory problems who are not depressed, according to a new study published in the journal Neurology.
Other conditions linked to depression, whether by hormones or direct effects on the brain or major body systems, include:

Autoimmune disorders, such as Addison's disease, lupus, and rheumatoid arthritis
Cancer
Coronary heart disease
Fibromyalgia, osteoarthritis and other musculoskeletal conditions
Head injuries
Infections, such as pneumonia, Epstein-Barr virus, HIV, the flu (influenza), and tuberculosis (TB)
Metabolic and hormonal disorders, such as anemia, Cushing's disease, low potassium, low sodium, and thyroid or parathyroid disorders
Neurologic disorders, such as multiple sclerosis or stroke

Some medications that may increase the risk of or symptoms of depression include:

Barbiturates, such as phenobarbital, which is used to treat epilepsy or insomnia
Beta-blockers, such as atenolol or metropolol, used to treat high blood pressure
Chemotherapy agents used for treating cancer
Cholinesterase inhibitors, such as neostigmine or physostigmine, used for treating Alzheimer's disease
Cimetidine (Tagamet), which is used for treating ulcers
Narcotics, such as codeine, hydrocodone, oxycodone, used for treating pain
Steroids, such as prednisone, used for reducing inflammation
Withdrawal from illicit drugs, such as cocaine

Learning More About Depression
You know how depression makes you feel. You've gone through the diagnostic process. You've probably even learned a thing or two about neurotransmitters while dealing with your condition. But you, like many researchers, are probably still curious.

What Causes Depression?
Two neurotransmitters (chemicals that help brain cells communicate) long thought to be involved in mood disorders include serotonin and norepinephrine. A long-standing theory has been that underactive neurotransmissions of these and other brain chemicals cause depression and may be involved in other mood disorders.

Defining Major Depressive Disorder
Since the 1970s, major depressive disorder has been defined by the presence of nine symptoms: sadness, loss of interest or pleasure, feelings of guilt, feelings of worthlessness, trouble concentrating or making decisions, suicidal thoughts, fatigue, abnormal eating patterns, and trouble sleeping.


Depression doesn't have to have such a strong impact on your life. Depression certainly can be a debilitating condition that increases irritability, restlessness, fatigue, and feelings of worthlessness, while decreasing sex drive, energy levels, and sleep. And it can hurt physically by contributing to headaches, back pain, digestive problems, bodily aches, and joint pain. But doctors can help you manage your symptoms. And you can play a large role in managing your condition by staying focused on your lifestyle.

Sometimes treating depression requires you to take a step back and see how far you've come. You won't notice a difference from day to day. If you keep track of your symptoms, such as in a journal or calendar, you'll likely notice improvements month to month. If you do not, please talk to your doctor and make sure you are motivated and willing to give yourself the care you need.


Take Care of Yourself
To reduce your symptoms while following the treatment plan your doctor recommends, be sure to:


1. Reduce Stress. The emotional effects of stress, such as anxiety, panic attacks, and sleep deprivation, may compound the physical symptoms associated with depression, such as headaches, upset stomach, and sexual dysfunction. And having depression may mean you'll feel more stress. Trying stress-reducing techniques like meditation, cognitive behavioral therapy, or yoga may serve a dual purpose. It may help you reduce the stress you feel, and it may reduce the negative effects of stress on your body. If trying to squeeze in a yoga class only increases your stress level, simply sitting comfortably in a quiet room for 15 minutes with eyes closed may let tension and stress have a chance to melt away.


2. Get Moving. We understand that depression may keep you from feeling like exercising. But if you can motivate yourself to do whatever activity you are able, the movement can start to make you feel better. Moving your body triggers the release of endorphins into the body, which are mood-boosting chemicals.
Getting exercise on a regular basis strengthens the heart and muscles, which may help reduce physical symptoms associated with depression, such as pain. Exercise also reduces stress, improves sleep, and wards off anxiety. A win-win all around. And remember, physical activity doesn't have to mean running. Walking, gardening, and playing outside with the kids count as physical activity. Remember to talk to your doctor before beginning an exercise program.

3. Eat Well. The foods you eat may affect your mood. Too much sugar may alter the balance of chemicals in the brain, contributing to mood swings and symptoms of depression. And one recent study potentially links a low level of omega-3 fatty acids with both depression and coronary heart disease. And depression is known to be a risk factor for coronary heart disease in those who do not have heart disease, and it is known to worsen outcomes in those who do have heart disease.
Maintaining a healthy diet may help lower your risks for other health problems. Choose fresh fruits and vegetables, whole grains, low-fat dairy, and poultry or fish, and make sure you eat them in proper portions. Limit highly processed foods, red meats, high-fat dairy products, and sweets. Avoid alcohol and foods containing trans fats.

Because you've been diagnosed with depression, it's especially important to pay close attention to what you eat. Depression may make some people turn to food for comfort and gain weight, whereas others will lose their appetite and lose weight.
If you have excess weight to lose, reducing your body weight could improve your symptoms of depression. A recent study done at the University of Pennsylvania shows that people with symptoms of depression who took part in a 6-month behavioral weight loss program not only lost an average of 8% of their body weight, they also significantly reduced their symptoms of depression. In addition, they improved their glucose and cholesterol levels and reduced their triglyceride level, thereby cutting their risk of heart disease and stroke, and they also significantly reduced their symptoms of depression.

4. Be Aware of Alcohol's Effects. Alcohol dulls symptoms and pain because it depresses the central nervous system. That means it affects chemicals in the brain. For example, alcohol reduces serotonin, which increases symptoms of depression. Alcohol abuse or dependency can be associated with major depressive disorder. Eliminating the intake of alcohol is an important part of your treatment. Avoiding alcohol altogether is best if you are taking prescription medications, as mixing alcohol with medication may result in serious side effects.

5. Find Shoulders to Lean On. Sometimes a good friend with a great ear for listening can help relieve some of the pressure depression brings. Spending time with friends and family members who make you feel good or working one-on-one with a therapist gives you a place to vent.

Beyond family, friends, and your therapist, joining a support group can help you connect with others who are experiencing similar problems. Support groups allow you to share the ups and downs you experience while trying to manage your depression, and may allow you to learn some new coping solutions from others in the group. Check local hospitals as well as state and local chapters of the National Alliance on Mental Health for support groups in your area. Some support groups are online, as well.


The more you know about depression and treatment, the better equipped you'll be to make wise decisions about your health. You answered 10 out of 10 questions correctly, or 100%. HEY, WOW--maybe being smart will make me feel better about myself?! :)



Depression can make you feel pain more intensely, and having chronic pain can make you feel depressed. True or False?
The answer is TRUE.
Depression is not just an emotional condition, it's very much physical, as well. People who are depressed are more likely to experience sleep disturbances, headaches, back pain and continuous dull aches and pain. Although depression can increase a negative response to pain, some of the chemical messengers to the brain for pain and depression are shared, making it possible for the brain to associate depression with pain, and vice versa. In fact, depression and chronic pain have a reciprocal relationship: People with chronic pain experience three times the average risk of developing psychiatric symptoms, including depression, and people living with depression have three times the average risk of developing chronic pain.
A Harvard Medical Center review found chronic pain to be both an emotional and physical condition, resembling depression and affecting mood and behavior and leading to isolation and immobility. Medications are available that alleviate both the mood symptoms and the pain. Eating well, reducing stress, and exercising also help keep pain and other symptoms at bay.


Depression medications may take several weeks to achieve their full effect. True or False?
The answer is TRUE.
Medications prescribed for the treatment of depression do not reduce symptoms overnight. It takes time for the medications to interact with the body, anywhere from four to eight weeks, as the medications increase chemical messengers in the brain. Not all medications interact with individuals the same way: What may work well for one patient may not work well for another. If one medication, taken for eight weeks, does not reduce symptoms of depression, doctors may try increasing dosages or try different medications altogether, again requiring additional weeks before knowing if they work. However, once the right course of treatment is found, depression symptoms can be greatly reduced and depression can go into remission. It's worth the wait.


Depression medication together with talk therapy is usually more effective than either type of treatment alone. True or False?
The answer is TRUE.
The goal of treatment is to put symptoms of depression in remission so that you can do what you enjoy and enjoy what you do. For some people, remission occurs after a course or two of antidepressants. For others, it is achieved with psychotherapy and no medication. For some people who have depression, psychotherapy may be recommended as the initial treatment. An antidepressant medication should be started if psychotherapy doesn't improve symptoms. For those who have severe depressive symptoms when diagnosed, antidepressant medication is recommended as the initial treatment.

At least a dozen studies show that the combination of psychotherapy and antidepressant medication is more effective than either alone, especially for those who have recurring depression or who have had severe depression for more than two years. Regardless of which type of treatment is being used, taking the medication exactly as prescribed and not missing doses is necessary, as are regular follow-up appointments and open, honest communication with the doctor at those appointments.


It doesn't matter if you miss a dose of medication now and then. True or False?
The answer is FALSE.
Antidepressants balance levels of chemicals in the body that regulate mood. There may be a lag before the medications relieve your symptoms. Your doctor's prescribed dosage is meant to work over time to reach the level in your body that will regulate your brain's chemicals. Even if you feel better, do not discontinue your prescribed antidepressant without talking to your doctor. This can result in a relapse of your symptoms or can be associated with symptoms of withdrawal, such as nausea, dizziness, and trouble sleeping. It is important to follow your doctor's medical regimen closely to put depression into remission.


If depression recurs, it is best to treat it with a different medication. True or False?
The answer is FALSE.
If you get your depression symptoms under control, are weaned off the medication by your doctor, and then have a recurrence of depression, many times your doctor may resume the medication that worked previously to manage your symptoms. Of course, the antidepressant you took in the past may have a similar response as you did before; if not, your doctor may consider other treatment options. Because depression tends to run in families, another medication option may be one to which a first-degree relative (mother, father, sister, brother) has had a positive response. Responses to medications often have a genetic component, too.


You can tell if someone is depressed just by looking at them. True or False?
The answer is FALSE.
Many people fear the thought of others knowing that they are depressed, and therefore often do not seek a diagnosis or treatment for their feelings. That is unfortunate because others will not know if you or anyone else is depressed unless you tell them. Although depression is considered to be a medical illness, like arthritis, heart disease, or diabetes, people with depression do not have a physical characteristic that "gives them away." Depression does not make a person have a certain look, nor does it cause any outward signs in the way that, say, arthritis may cause apparent red, swollen joints or a limp.


Once you start feeling better on medication, you can stop taking it. True or False?
The answer is FALSE.
Some patients taking antidepressants may feel so good they assume their depression is in remission and believe they no longer need antidepressants. Patients who abruptly stop taking medications may experience a return of depression symptoms and may also experience symptoms of withdrawal. Researchers examining the effects of abruptly coming off a class of antidepressants called selective serotonin reuptake inhibitors (SSRIs) have found that patients felt serious physical and emotional effects, including flu-like symptoms, vomiting, fatigue, and dizziness. It is important to remain on treatment until your doctor recommends slowly weaning you off of medications. Your doctor will lower dosages over time and phase out the medications slowly, so as not to cause withdrawal symptoms or trigger a relapse of depression.


Depression always causes the same symptoms in everyone. True or False?
The answer is FALSE.
Depression is a common medical illness, associated with biologic changes in neurochemistry in the brain. It is associated with both emotional symptoms (mood changes) and physical symptoms, such as fatigue, headache, abdominal pain, and muscle tension, but not everyone who is diagnosed with depression has all of the symptoms. To diagnose major depression, either depressed mood or a loss of interest/pleasure in activities that were once found to be enjoyable must be present most of the day nearly every day for at least two weeks in a row, in addition to changes in sleep, appetite, weight, psychomotor activity, energy level, or ability to concentrate. Thoughts of worthlessness, guilt, death or suicide may also be present.


If the first medication you try doesn't work, no antidepressant will help. True or False?
The answer is FALSE.
Just because one antidepressant doesn't work for you does not mean that another one won't or that your depression can never be treated. If you've been taking a medication exactly as prescribed -- that is, in the proper dosage and not missing any doses -- for at least eight weeks, then tell your doctor that the prescribed medication doesn't seem to be working. Knowing that people can respond differently to the same medication, your doctor will understand. Your doctor may increase your dosage, prescribe a different medication altogether, or suggest that you add talk therapy (one-on-one counseling or support group), which can improve the effectiveness of antidepressant medication. Once you and your doctor find the right course of treatment for you, your symptoms of depression may subside, and your depression may go into remission.


Most people with depression will have it only once in their lifetime. True or False?
The answer is FALSE.
Major depression is a relapsing, remitting illness in most patients. Following a first episode, there is a greater than 40% rate of recurrence over a two-year period; after two episodes, the risk of recurrence within five years is approximately 75%. Ten percent to 30% of patients treated for a major depressive episode will have an incomplete recovery, with persistent symptoms or dysthymia.

FAQ U: MELISSA'S MAIL BAG

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

REST IN PEACE: 46 year old Bonnie lost to Cushing's

This blog post is posted from Cushing's & Cancer. Thank you for sharing this with all of us, MaryO.

I did not know Bonnie personally but she was an Australian member of the Cushing's Help message boards who rarely posted. 

She was only 45 at the time of her death October 12, 2009.  I've known far too many Cushies who have died far too young from this disease.

Bonnie's Before and after Cushing's pictures

Bonnie wrote July 1, 2009:

I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumor removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.

Now two and a half years on, I have a second tumor... on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don't know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!

All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those; from MM--Cushing's causes malabsorption of Vitamin D and calcium which can leads to brittle bones and osteoporosis ), as they made life so difficutlt and painful, but I also really hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, it's pretty hard to take.

As a single parent (divorced), life is very hard with Cushing's as you don't have anyone else to do the things for you that you can't do yourself, or help you with your own personal stuff.

Beth said it best on Facebook:

(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥

This blog post is posted from Cushing's & Cancer at Cushing's & Cancer.

STARS GO BLUE: The Omnipresent Threat and the Aftermath of Cushing's

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Would you know what to do if your child had Cushing's?

Jackie, Sam's mom says:
"It happened in early August, and quite frankly I haven't had to strength, spirit, or energy to give an update. I was away at NAtional Institue of Health with Jordan for her yearly follow up. I left Sam with her dad and 14 year old sister."

"Sam lay dying for 13 hours with Seattle Children's endocrinologists standing around watching and wondering why the continual 15 mg of hydrocortisone they were giving her via IV wasn't working."

The story of Sam, a child with Cushing's, and her courageous mother Jackie (and sister Jordan, too), is one of the most memorable and heart wrenching stories I have ever heard. Robin, an invaluable member of the Cushing's Help and Support message boards wrote a poignant and brilliant summary of this family's story while giving us the latest news of the challenges Cushing's continue to place on Sam's family. Please read Robin's survive the journey blog . Thanks so much to Robin for retelling a touching story, to Jackie for sharing theIr touching story, and to Sam for living such a touching story.

Once the Cushing's monster finds you, it never completely leaves you alone. It is always lurking in the back of your mind, even if everyone around you has forgotten it. THIS possibility is what drives Cushies mad with worry and sadness. If we can't get the people who love and support us to help us, we live in constant fear of being alone when we can not do for ourselves and when we need help the most.

Fighting My Way Out of the Funk

I'm sorry. I haven't been posting here. I realized I didn't want to share any bad news. People don't expect that from me. People really don't want to hear bad news. They have their own problems. In this economy, people are taking a beating in all aspects of their life. I find that the more I keep it all to myself, the better everyone else feels around me. I don't want to be Debbie Downer. Who does?

However, I have realized in the last two weeks that I can't keep it all in anymore. I physically can't keep it in. Emotionally, I can't keep it all in. I miss "telling" my experience to "someone." It really doesn't feel like anyone really listens in my "real" world. I can't blame them. There are far more interesting things to discuss than what my latest ailment entails. While I don't blame them, I have been feeling increasingly sorry for myself. That's unfair, and it is a tremendous load to care alone. So I decided that I will try to put it out "there" so that I don't feel like I am keeping it all pent up inside. Maybe this will help. Something has to. Soon.

It's therapeutic, somehow, to know that someone else may have experienced or might experience what I am going through now. So here it goes. Shorter posts, hopefully helpful, even if just to me.

I hate to blog and run, but I've got to put the baby to sleep. ~Melissa

********************

I am always encouraging people to take charge of their own lives, especially their own healthcare. So for now, I wanted to share a book I just saw mentioned on the Dr. Oz Show from Dr. Lisa Sanders. I'm gonna download it on my Kindle on my iPhone now. Good. Something new to do. I am looking forward to reading this book: Every-Patient-Tells-Story by Dr. Lisa Sanders

Click here to read an excerpt from the book Every-Patient-Tells-Story by Dr. Lisa Sanders

I also found this from the Oprah.com site:
Every-Patient-Tells-Story by Dr. Lisa Sanders

How to Help Your Doctor Help You
By Naomi Barr

Gregory House, MD, the main character of the Fox TV show House, isn't like other TV doctors. While they obsess over emergencies, surgeries, and affairs of the heart, House is all about the subtle art of diagnosis. That's no surprise given the inspiration for the series—the New York Times column "Diagnosis," by Lisa Sanders, MD. In her new book, Every Patient Tells a Story, Sanders uses puzzling medical cases to illustrate how narrative can help you help your doctor. Here, she shares some pointers:

O: How do I know what to tell my doctor?
Sanders: You're telling your story even before you call a physician. You share it with your friends, your mother, your spouse. You tell them about the pain you're feeling—what makes it worse, what makes it better, how it affects your life. Use this info, and then be prepared to answer the questions that doctors ask.

O: What kinds of questions?
Sanders: Actually, the first question is one that I find doctors rarely ask, though they should: "Do you have any idea what this is?" Patients usually do have a sense of what is ailing them. So if your doctor doesn't ask, speak up. I had a patient with fever, low blood pressure, sore throat, and maybe diarrhea. I took a good history and did a thorough physical exam. But 48 hours later, all the tests (Lyme disease, various other bacteria, salmonella, etc.) were negative. As I was giving her the results, she said, "Oh, I think this might be dengue fever because I was just in Puerto Rico visiting relatives and everybody in the neighborhood had dengue and felt just like this." Sure enough, that's what she had. Another important question: "Has anything like this ever happened to you before?" Patients often overlook this. If something strange happen to you once, okay, everybody has one freak occurrence. Twice? That's a pattern.

O: What happens if your doctor doesn't take the time to listen?
Sanders: If your doctor interrupts before you are through, indicate to her you're not done. We have no idea which detail is going to be useful until we hear them all. When you get a chance, say, "I'd really like to go back to my story. I still have some thoughts about what's going on." You are the expert on your experience, and no one but you can describe your area of expertise: your body.

FOLLOW-UP: It's Back to San Antonio

Hi. I don't have much to say except that I am heading back to San Antonio on Thursday for follow-up appointments with my endocrinologist and neurosurgeon. It is hard to believe it has been six weeks since my pituitary surgery.

I'll post soon.
~Melissa

P.S. My system of creating a new email is not working so good. We can't get the account to load onto my iPhone. I already have 4 accounts pulling in to the device. Is there a limit? Why won't it let me keep track of my fellow Cushies?! I'm sorry I haven't replied to your messages yet. Elena has been exceptionallly clinging for a while.

TESTING PHOTO UPLOADS FROM MY PHONE

05/10/2009: Elena on our first Mothers Day together. I know that if I didn't have Cushing's, I wouldn't have Elena. She is the most incredible thing I have done in my life.

Cushing's, I have to come to terms and accept you! Life sure takes you on a windy road!

06/11/2009: My last few moments at the hotel with my sweet Elena before we head to the hospital for my pituitary brain surgery.[Not in photo: me taking Elena around the corner and crying in fear of leaving her and never coming back].

I'M FAT, I'M FAT, I KNOW IT: Outreach to the Weight Loss Community

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As many of you know, it is my hope that we can inform the populace about Cushing's disease and hopefully improve the quality of lives of many patients.

In that effort, I wanted to share with you a quick post I left for the owner of a weight loss message board/website. I posted it under the "suggestions to the webmaster" forum.

Today's group: carb counters. Gastric bypass and lap band patients, I am coming after you next!

~Moxie Melissa

Hello... Webmaster. I did an internet search and found this site. Thank you for all your hard work.

After many years of following a low carb diet, I have now had pituitary brain surgery to remove a benign tumor that was causing Cushing's disease. It is the cause of my uncontrolled weight gain of 75 pounds in 4 years as well as a myriad of terrible symptoms.

This quote from my blog sums it up best:

"Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity (see video link on ). This is my personal blog, and I hope to help people understand this disease and get themselves diagnosed quicker and on the road to health and happiness sooner.

Anyway, I have visited your site a few times, and I always see someone posting about the possibility of Cushing's. As the webmaster, you are in the unique position to inform people who have this disease but may not have ever heard of it... until they see a group listed under Health Groups called Cushing's on your site. One click may open their eyes to the disease that my endocrinologist said was the most difficult diagnosis to make in all of medicine.

Would you please consider it? Through my blog, people thank me for taking the time to write about my experiences. They say they would not be on the right track to diagnosis if it hadn't been for me. Some say I have saved their lives. If you create a group on your site, you could be doing the same for people.

I hope that you are willing to help. If I can help you in any way, please contact me. If you do decide to help, please drop me a quick line and let me know. I may start posting over here, too!

ORGANIZATION MOXIE: Where the Rubber Meets the Road

Hi everyone.

The wean is slow but going okay. I am 5 weeks post op today. My dose of hydrocortisone is 15 mg @ 8 am and 5 mg @ 3 pm. I see my neurosurgeon and endocrinologist for a follow up next Thursday. I have been keeping track of my doses and symptoms in a spreadsheet. When I get time, I will post it here, in case it will be helpful for anyone to see how my doctors and I handled it. If it never appears, feel free to remind me!

Also, I wanted to let you all know that I have been getting myself organized lately. Nothing like finally getting papers filed after over a year! (not that I had a good excuse or anything...). I am trying to get my home office paperwork filed electronically, and it is a huge but worthwhile undertaking. I am not finished yet, and I have been working on it for a week. Wish me luck!

So, along with this new found need to organize finally, I want to be better about answering questions that you readers may have. I wanted to let you know that I am now in a better position to answer any emails that you send me. Before, I was completely overwhelmed with Cushing's and my sweet baby. Now after surgery, I feel I have things under control, well, more than I did. I have an iPhone (greatest invention ever--it's a computer in the palm of your hand!), and this allows me to check email every few days without getting on my laptop. With a baby in my arms most of the day, this is a wonderful addition to my toolbox.

As always, if you want to post a comment, feel free to do so. I welcome and encourage that. Please be forewarned that I like to publish your stories to show others how this disease sneaks up on us.

If you have a specific question, please ask it in the comments section, include your email address, and I will be sure to reply to you via email. If it is ok, I would like to post all incoming emails to my blog in the comments section, and if you include your email address, I will just cut and paste your message and post it under comments myself. That way, I will not post your email address publically.

For direct access, my email address is moxiemelissa then at symbol gmail.com (I am trying to avoid spam by not posting the email addy here).

Anyway, I better scoot. Take care. I hope everyone is doing ok.

~Moxie Melissa

WHITE ON RICE: Get Your Test Results from your Doctors

Are you one of the people who still believe your doctor is always looking out for you? Naaah... really? They try, but the docs and their staff are overwhelmed. I've been in a lot of waiting rooms in the past two years. I bet it is safe to say that in the course of an 8-hour day, doctors see at least 2 patients an hour, or at least 16 patients a day x 5 days. That's 80 people just like you, trying to get help or get treatment. That's a lot of lab work, insurance filing, appointment calls, and processing to keep up. It all repeats the next Monday, too, and the Monday after that, and the Monday after that.

I wanted to share this link about a study posted in USA Today that found many patients do not get a call from the doctor regarding abnormal test results. These results get stuck on someone's desk or filed away in a patient's chart.

If you do not ask for your test results, this could be you.
If you do not take an active role in your healthcare, this could be you.

What can you do?
I always ask the doctor how long it will take to receive the test results.
I then ask the lab tech that draws my blood how long it will take to process the labs.

If they say 4 days, I set a reminder in my iPhone calendar to call on day 5. I ask the staffer to fax me a copy, or I tell them I will be by to pick it up at a specific time and day.

If they say 2 weeks, I set a reminder in my calendar and call on day 15. I ask the staffer to fax me a copy, or I tell them I will be by to pick it up at a specific time and day.

ALWAYS. As I have said numerous times on this blog, if you do not care about your own health, why would anyone else?

~Moxie Melissa

NAPS: The Search for the Ultimate Afternoon Delight

I started napping for the first time since my pituitary surgery four weeks ago. It started this past Tuesday, when I dropped my dose of hydrocortisone from 25/10 to 20/10. With my sweet Elena at my mom's house, I stayed in bed all morning, thanks to meals and meds from my work-at-home-today-because-he's-working-Saturday-night hubbie.

I love a good nap. I hope you get a good one, too.

~MM

Thanks to the MaryO and her Cushing's & Cancer blog for sharing this entry originally posted on the MS Brass and Ivory blog. This made me smile.

The steroid taper finished up this past Sunday, but instead of finding some new energy, I've been caught in a fog of fatigue. Without too much choice in the matter, I've drifted off to the land of comatose and nod for hours during the past three days. As I know many of you have been in the same place far more often than either of us would like, I thought you might enjoy the following poem taken from Falling Up by Shel Silverstein, a well-loved book which sits in the waiting room of my music studio.

The Nap Taker
No--I did not take a nap--
The nap--took--me
Off the bed and out the window
Far beyond the sea,
To a land where sleepy heads
Read only comic books
And lock their naps in iron safes
So that they can't get took.

And soon as I came to that land,
I also came to grief.
The people pointed at me, shouting,
"Where's the nap, you thief?"
They took me to the courthouse.
The judge put on his cap.
He said, "My child, you are on trial
For taking someone's nap.

"Yes, all you selfish children,
You think just of yourselves
And don't care if the nap you take
Belongs to someone else.
It happens that the nap you took
Without a thought or care
Belongs to Bonnie Bowlingbrook,
Who's sitting' cryin' there.

"She hasn't slept in quite some time--
Just see her eyelids flap.
She's tired and drowsy--cranky too,
'Cause guess who took her nap?"
The jury cried, "You're guilty, yes,
You're guilty as can be,
But just return the nap you took
And we might set you free."

"I did not take that nap," I cried.
"I give my solemn vow,
And if I took it by mistake
I do not have it now."
"Oh fiddle-fudge," cried out the judge,
"Your record looks quite sour.
Last night I see you stole a kiss,
Last week you took a shower,

"You beat your eggs, you've whipped your cream,
At work you punched the clock,
You've even killed an hour or two,
We've heard you darn your socks,
We know you shot a basketball,
You've stolen second base,
And we can see you're guilty
From the sleep that's on your face.

Go lie down on your blanket now
And cry your guilty tears.
I sentence you to one long nap
For ninety million years.
And when the other children see
This nap that never ends,
No child will ever dare to take
Somebody's nap again.

WISE WORDS WORTH (W)REPEATING

I found this in a stack of papers. I can't find who wrote this? Was it Linda or Kate or MaryO? If you know, please tell me. I want to give the kind soul credit for this piece of advice.

6. You do not to test positive on every single test, or test positive on every type of test, to have Cushing's. There is susbstantial variation in how we present with this 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 A NEGATIVE RESULT ON A PARTICULAR TYPE OF TEST, PREVENT YOU FROM AGGRESSIVELY PURSUING A CUSHING'S DIAGNOSIS IF THERE IS STRONG SUSPICION. For example, for an individual to have proven Cushing's without ever having a positive on a ufc or dexamethasone suppression test.

Yes, this applies to me. I never had a high UFC or abnormal dex test.

HEAR YE, HEAR YE: Patients Talk about Life with Cushing's

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You can read about Cushing's. This blog and many other websites offer the text version of this devastating disease.

Hearing people who have Cushing's describe their path to diagnosis and treatment is quite emotional, as it fills in the gaps between the written word. I am amazed at how people stumble onto diagnosis after years and years of being ignored by their doctors. Many Cushies visit five to ten doctors before they even see an endocrinologist, then many go to see several "endiots"--our affectionate term for endocrinologists who don't quite understand the way Cushing's presents in today's patients--before they receive the help they deserve.

Take a listen to real Cushing's patients who describe their onset of symptoms and how they fought to get the diagnosis. For anyone fighting this disease, it is truly heartbreaking to listen to how people have struggled and triumphed over this disease. I have yet to listen to one that did not bring tears to my eyes.

To all my fellow Cushing's patients out there who have fought this disease with such determination, courage, and moxie: I salute you. I dedicate all of these efforts to you, to us.

Go to the Cushing's Help and Support website to choose the podcast format of Cushie Chats: BlogTalkRadio or iTunes.

Go directly to Cushing's on BlogTalkRadio.



*

DEATH BY CUSHING'S: Accidental death verdict on 40-year-old mum

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It is with a heavy heart that I share this story today about an unnecessary death, due to Cushing's. I send my most sincere condolences to the Richardson family and all those affected by Marie's passing.

This just shows that often MRIs miss teeny tiny tumors. Doctors were unsure if I had a pituitary tumor, although they agreed there was a suspicious area. During surgery, my neurosurgeon easily spotted the camera-shy tumor, which measured 3 millimeters or 0.12 of an inch. That's really small to wreak such havoc on the body. Dastardly little tumor!

If you think you have to waste, you are wrong.
If you don't fight to get yourself diagnosed and treated, then who will?
If not you, then who? If not now, then when?

~Cushie Melissa
*

Accidental death verdict on 40-year-old mum

Published Date: 03 July 2009
By Garth ApThomas

A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.

Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.

A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system.

The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.

Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.

Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.

The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.

Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.

Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.

She had been given a scan involving the pituitary and there was no evidence of a tumor.

It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.

Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.

Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.

Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.

Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor.

He said that with hindsight the only potential other avenue may have been if she had been given steroids.

But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.

Recording his verdict of accidental death Mr Gittins emphasized: "This is not an indication of responsibility, blame or judgment.
"That is not my jurisdiction.

My very sincere condolences go to the family."

Page 1 of 1

* Last Updated: 03 July 2009 8:35 AM
* Location: Wrexham

DEPRESSED: Withdrawal from steroid cortisol replacement

My body is not making any cortisol on its own. Cushing's disease made my hypothalamus-pituitary-adrenal axis off kilter. Now, I am taking steroid hormone replacement in pill form--hydrocortisone--to restore the proper amount of cortisol my body stopped making once the benign pituitary ACTH-secreting tumor was removed.

I have been feeling all of the expected symptoms that are related to dropping my dose of hydrocortisone weekly.

* severe fatigue
* dizziness
* nausea
* headache
* joint aches
* back aches
* depression

Lying down and closing my eyes gets me through the first three. Darvocet, my pain killer friend, gets me through the aching pain. The last one bothers me more than the others. Even taking 200 mg of Sertaline/Zoloft, an antidepressant, doesn't help me combat the depression brought on by low cortisone. Even a friend said she couldn't cry at all on 100 mg--it helped her that much. I'm on double and it's like I'm not on anything.

This got me thinking of the mind bender that is as debatable as the Chicken v. Egg case.

If a tree falls in the forest and no one is around to hear it, does it make a sound?

I am wondering if the same is true about me and my recovery.

It is day 24 after pituitary brain surgery.
Yes, they went through a natural orifice to access the part that hangs from the brain. The docs didn't do a craniotomy. They did not shave my head, and I did not lose my hair. For that, I'm thankful. However, they did get pretty darn close to my brain... like a centimeter or so. They gave it a little tickle. I've never liked being tickled.

So, I must ask:

If a Cushing's patient struggles after surgery and no one asks her how she is doing, is she really even sick?

~ Cushie Melissa

P.S. I admit a large degree of self-pity in this post. I feel needy and disappointed and unaccomplished and helpless. I am really even reluctant to post this now, and you may come back later and this post will be gone. If I can publically confess and own my uncomfortable feelings of being a weak, sick patient, then this post will remain here for others to read.

I post my true feelings because that is what I promised myself I would do. Strong or weak. Good or bad. Happy or sad.

I want to show those fighting with Cushing's that coping with this "rare" disease is difficult. People do not understand. It is not just you, your family, your friends. It happens to all of us. I understand.

So let's know that this is the case.
Let's keep moving ourselves forward.
It makes no sense to wallow.
I hate to wallow.
I do wallow, but I don't like to.
When I get sick of myself, I stop.
Like now.
I'm done.
Happy birthday, America.

:)

CARDIAC PADDLE TO THE CHEST: A Letter from the Founder of the Pituitary Network Association

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I have found the Pituitary Network Association to be an incredibly helpful resource. For the undiagnosed, take this letter from its founder as a cardiac paddle to the chest. For the friends and family of the sick, understand the severity of this disease. It matters not whether you have heard about it before or not.

From Our Founder:

Greetings,

If you are just learning about pituitary tumors and the many associated problems and hormonal disorders let us start with a frank discussion of where you are: Pituitary Tumors, though described in some textbooks as "benign" can be very aggressive and can do irreparable harm. Some can even be lethal IF NOT PROPERLY TREATED!

Do not allow your physicians, or yourself or family to treat these tumors lightly or in a start and stop fashion. Get highly qualified professional help. As with cancer or heart disease, you need expert help, only. The last sixty years have been remarkable in pituitary endocrinology. In the 1930's for instance, Cushing's Disease was a death sentence; patients lived an average of 4.7 years after presentation of illness. In the 1950's, the five year survival rate was 50%. The cure rate for microadenomas today is approximately 90% and improving. Experts in Neurosurgery and Pituitary Endocrinology have so improved the cure rate in a mere 60 plus years that the general medical community, and certainly insurance companies and others, tend to think of Pituitary Disease the way they think of Polio. The threat is over and the scourge has left us. Sadly, with Pituitary Tumors this is not the case. Each and every patient has to be evaluated and "fought for" or the battle may be lost.

These tumors act and grow differently in every patient. A correct diagnosis and treatment plan is essential for the survival of many of us. Yes, clearly, in many they are slow growing and may cause little apparent outward damage. Regretably, many with so called "incidental" or "non-secreting" tumors often have symptoms which their physicians simply forget or are untrained to ask about. Sexual function, mental health, overall ability to function and fit in, are all vital aspects of our lives. The tumor may not "take" our life but may in fact change it to the point of lowering the patient and his or her family into a "living hell". Study, learn, seek expert help and join the PNA as we continue to bring you the REAL facts about these insidious diseases and their often fateful consequences.

We do not mean to alarm you, but in the past twelve years we have witnessed enough deaths and suffering to know with certainty that no one has the right to deceive you about the issues you face. We do not yet have ALL the facts, nor are we here to console you. We are here to inform and alert you about Pituitary and Hormonal disorders. If we help save your life and make it better, we have succeeded.

Good luck and God Bless.

Robert Knutzen, founder
Pituitary Network Association

*

CUSHING'S: For the new folks

Hi everyone. I am working on a few blog posts that I hope I can post soon. For today, I'd like to spend a minute or two helping some new folks figure out what to do next. I know I've got a lot of information on this site. Sometimes, you need the basics. Here are the basics. I hope it helps.

HIGH UFCS
A high urinary free cortisol test, or UFC, is the "gold" standard of Cushing's tests. That means, if your UFC value is high, it is likely you have Cushing's. Doctors of all disciplines don't know much about Cushing's, but they seem to remember one fact about Cushing's: you have to have a high UFC to have it.

Now, if you do not have a high UFC, you could still have Cushing's. I took over 15 UFC tests and I never had an abnormal UFC. Never. I was told by eight endocrinologists that I did not have Cushing's. In fact, many patients will never have a high UFC, but many are later diagnosed with cyclical Cushing's. They--and I--still have Cushing's.

The important thing to remember is that hypercortisolism, or the overproduction of cortisol, can be measured in a few different tests. No one tests excludes the diagnosis of Cushing's. However, abnormal test after abnormal tests, in conjuction with multiple symptoms, does point to Cushing's.

midnight cortisol saliva
8 am cortisol serum blood test
4 pm cortisol serum blood test
midnight cortisol serum blood test
24-hour urine free cortisol test (UFC)

High ACTH is indicative of hypercortisolism, since ACTH is the pituitary hormone that triggers the adrenals to produce cortisol.

8 am ACTH plasma blood test
4 pm ACTH plasma blood test
midnight ACTH plasma blood test

Get a good understanding of Cushing's, ACTH, and cortisol, according to links on Labtestsonline.org. Be sure to click on all five tabs above each entry:

ACTH (adrenocorticotropic hormone)

cortisol

Cushing's 1 Cushing's 2 Cushing's 3

From labtestsonline.org:

Is there anything else I should know?

How is it used?
ACTH levels in the blood are measured to help detect, diagnose, and monitor conditions associated with excessive or deficient cortisol in the body. These conditions include:
* Cushing’s disease: excess cortisol that is due to an ACTH-producing tumor in the pituitary gland (usually a benign tumor)
* Cushing's syndrome: refers to the symptoms and signs associated with excess exposure to cortisol. In addition to Cushing’s disease, Cushing’s syndrome may be due to an adrenal tumor, adrenal hyperplasia, the use of steroid medications, or due to an ACTH-producing tumor that is located outside the pituitary (such as in the lungs).
* Addison's disease, primary adrenal insufficiency: decreased cortisol production due to adrenal gland damage
* Secondary adrenal insufficiency: decreased cortisol production because of pituitary dysfunction
* Hypotituitarism: pituitary dysfunction or damage that leads to decreased (or no) hormone production by the pituitary – including ACTH production

Measuring both ACTH and cortisol can help to differentiate among some of these conditions. Because the level of ACTH normally changes in the opposite direction to the level of cortisol, your doctor can learn much by identifying an imbalance in this relationship and the direction in which the imbalance occurs. The table below indicates the common patterns of ACTH and cortisol seen with different diseases involving the adrenal and pituitary glands.

Cushing's disease (pituitary tumor making ACTH)
High Cortisol
High ACTH

Adrenal tumor
High Cortisol
Low ACTH

"Ectopic" ACTH (ACTH made by a tumor outside the pituitary, usually in the lung
High Cortisol
High ACTH

Addison's disease (adrenal damage)
Low Cortisol
High ACTH

Hypopituitarism
Low Cortisol
Low ACTH


OTHER HORMONES
The pituitary is the master gland. It controls every hormone produced in the body. The presence of a pituitary tumor will press on cells it shouldn't press on up there, causing the malfunction of other pituitary hormones. Therefore, if you are to test if the pituitary is affected by a benign tumor or microadenoma, it is important to test other hormone levels.

Oregon Health and Science University's Pituitary Unit: The Basic Pituitary Disease / Pituitary Tumor Work-up and A Clinician's Guide to the Work-up of Pituitary Disorders

Here are a few other sites that discuss the testing process. You will find that many repeat the same info. That is good. This repetition gives you the sense that there is an agreed protocal on how to diagnose this disease. Again, getting a high UFC is most of the battle. Once you have a high UFC test in your pocket, you can pretty much get doctors to order the other tests without much hassle, or so I've been told.

Cushing's Support & Research Foundation's Fact Sheet and Cushing's Support & Research Foundation's Diagnostic Testing for Cushing's Syndrome

Pituitary Network Association's Cushing's page.

This is a little more complicated reading from a medical journal, but again, I think you can work your way through it: The Diagnosis of
Cushing’s Syndrome: An Endocrine Society Clinical Practice Guideline

PNA Disorders Section - Introduction to the Pituitary Gland
Categories:

Our thanks to Daniel Kelly, M.D. (Director, Neuro-Endocrine Tumor Center - John Wayne Cancer Institute at Saint’s John Health Center, Santa Monica, CA) and Pejman Cohan, M.D. (Director, Specialized Endocrine Care Center - Beverly Hills, CA) for providing the following disorder information.

Introduction To The Pituitary Gland

The pituitary is a small, bean-shaped gland located below the brain in the skull base, in an area called the pituitary fossa or sella turcica. The gland is regulated by a region of the brain called the hypothalamus and they are connected by a thin delicate vascular connection called the pituitary stalk or infundibulum. Weighing less than one gram and measuring a centimeter in width, the pituitary gland is often called the "master gland" since it controls the secretion of the body’s hormones. These substances when released by the pituitary into the blood stream have a dramatic and broad range of effects on growth and development, sexuality and reproductive function, metabolism, the response to stress and overall quality of life. The pituitary gland is thus at the anatomical and functional crossroads of the brain, mind and body.

Structurally, the pituitary gland is divided into a larger anterior region (adenohypophysis) and a smaller posterior region (neurohypophysis). Directly above the pituitary gland are the crossing fibers of the optic nerves called the optic chiasm as well as the optic nerves as they project to the eyes. On each side of the pituitary gland is the cavernous sinus which is a venous channel through which runs the large carotid arteries that carry blood to the brain, and important nerves that control eye movements and facial sensation. Because of the close proximity of the pituitary gland to these major intracranial nerves and blood vessels, as well as the vital hormonal control the pituitary gland provides, disorders of the pituitary can cause a wide spectrum of symptoms, both hormonal and neurological.

Listed below are the specific hormones produced by the pituitary:

Growth Hormone (GH): This is the principal hormone that, among many other functions, regulates body and brain development, bone maturation, metabolism and is essential for healthy muscles.

Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH): These hormones control the production of sex hormones (estrogen and testosterone) as well as sperm and egg maturation and release.

Prolactin (PRL): This hormone stimulates secretion of breast milk.

Thyroid Stimulating Hormone (TSH): This hormone stimulates the thyroid gland to release thyroid hormones. Thyroid hormones control basal metabolic rate and play an important role in growth and maturation. Thyroid hormones affect almost every organ in the body.

Adrenocorticotropic Hormone (ACTH): This hormone triggers the adrenal glands (located above the kidneys) to release the hormone cortisol which in turn, regulates carbohydrate, fat, and protein metabolism and is essential in the stress response.

Vasopressin - Also called anti-diuretic hormone (ADH): This hormone promotes water to be reabsorbed by the kidneys and is thus essential in water and electrolyte balance.

In disease states, the pituitary gland may under- or over-produce hormones. Decreased or absent hormone production from the pituitary gland is called hypopituitarism (Pituitary Failure). The symptoms and treatments for pituitary failure are listed below:

Hormone
Deficient Symptoms
Treatment

Growth Hormone
Children: Growth delay
Adults: Decreased muscle mass, increased body fat, elevated cholesterol, low bone density (osteoporosis), impaired psychological well-being, poor quality of life Recombinant Human Growth Hormone- Given once daily as an injection under the skin

LH / FSH
Decreased libido, erectile dysfunction, irregular or absent menses, decreased body hair, decreased muscle strength, hot flashes, mood changes
Men: Testosterone- Given as either topical gel or patch or injections
Women: Estrogen + Progesterone-Given as either topical patch or pills

ACTH
Poor appetite, nausea, weakness, vomiting, low blood sugar, low blood pressure, dizziness, body aches Hydrocortisone or Prednisone-Given as daily pills

TSH
Fatigue, weakness, cold intolerance, dry skin, constipation, heavy/painful menses, weight gain, memory loss, mood disturbance
Levothyroxine – Given as daily pills (some examples include Synthroid or Levoxyl or Levothroid or Armour Thyroid)

Prolactin
Inability to lactate
No treatment available

Vasopressin (ADH)
Increased thirst and frequent urination
DDAVP- Given either as daily pills or nasal spray

Pituitary tumors (also called pituitary adenomas) can result in hormonal overproduction causing serious endocrine disturbances such as acromegaly (excess GH), Cushing’s disease (excess ACTH) or prolactinoma (excess prolactin). Other pituitary adenomas are non-functional or "endocrine-inactive," meaning that they do not produce excess hormones. Instead, as these tumors enlarge, they can cause compression of the normal pituitary gland leading to decreased or absent hormone production (hypopituitarism or pituitary failure), visual loss from optic chiasm or optic nerve compression and headaches. Pituitary failure may also result from bleeding into a pituitary tumor, pituitary or intracranial surgery, radiation therapy to the pituitary or head trauma. Other tumors that arise near the pituitary gland which can also impact pituitary hormonal function include Rathke’s cleft cysts, craniopharyngiomas, meningiomas, chordomas, gliomas and epidermoid cysts.

For more quick info, check out the info posted on the left side bar.

I hope this helps.
Cushie Melissa

CUSHING'S DISEASE ENDS MODEL'S CAREER; SHE FINDS BETTER ONE

I have so much respect for Carol Perkins for sharing her story in Ladies Home Journal, the prominent women's magazine. That takes a lot of courage. Women are five times more likely than men to be affected by Cushing's. It is my strong belief doctors dismiss women in their 20s-50s when they present with weight problems, fatigue, headaches, etc. In addition, while they tend to go to the doctors more often than men, it seems that women are more likely to be passive in dealing with the medical community, particularly male doctors. Aren't we all taught how smart doctors are, and how they went to school for all those years, make all that money now, and therefore, they know what they are speaking about, but not us? Little ol' measly puny us? Who are we to think that we know more? It's instinct. It's guts. That's what.

Women with a rare disease are unfortunately being treated contempt and given pithy advice to exercise and lose weight. Most docs are not too subtle in their suggestions, leaving Cushies feeling demoralized, dejected, and humiliated. This must stop. Thank you, Carol, for helping us get the word out. Kudos to you.

It is important to thank the folks at Ladies Home Journal for publishing this important article. I know that with ever mention of Cushing’s disease, there will be at least one person’s life that is saved, as early diagnosis is key to Cushies making a full recovery (and cutting out unnecessary misery).

Do you want to tell LHJ thank you, too? Follow this link to post a comment on the LHJ website.You have to register, but please do it, if you have an extra moment or two. It will show them how appreciative we are. Do it for the Cushies and the ones who love us.

~Cushie Melissa

Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career.

By Jenny Miller

Originally published in Ladies' Home Journal, July 2009.

Throughout her 20s and 30s Carol Perkins lived a dream life. She traveled the world as a Ford model and appeared in magazines like Vogue and Harper's Bazaar. In her early 30s she continued modeling for clients like Victoria's Secret and started performing with magicians Penn and Teller. When she wasn't working she was out on the town, at art exhibition openings, theater events, and nightclubs. Home was a loft apartment in Manhattan. "It was a fashionable, fast-paced life," Perkins says. "Definitely glamorous."

Then she got sick. "I started getting dizzy and having severe headaches," she recalls of 1995. Even worse for her career, her weight shot up by 70 pounds. She developed a hump between her shoulders and noticed hair growth on her chin. Doctors prescribed antidepressants, weight-loss pills, and migraine medication, but nothing helped. As the bizarre symptoms intensified, Perkins could no longer work. "I was disfigured and unemployable," she says. "I kind of hunkered down and lived off my savings."

In a short time Perkins had gone from jet-setter to shut-in. Many friends, unable to deal with her illness and physical transformation, stopped coming by. "It was a really dark downward spiral," she remembers. Two things kept her from complete despair: dogs and sewing. Perkins had always loved animals, so much so that she'd once considered going to veterinary school. But her travel-heavy career had made it impossible for her to have a pet. Now homebound, she began pet-sitting for friends and neighbors. "They were my emotional support dogs," she says. "Dogs don't care if you're fat -- they love you unconditionally." Perkins also loved to sew, and she began making robes, sweaters, and dog beds as gifts for her canine guests. "There's such a joy in making something with your hands," she says. "I was really grateful to have a purpose."

A year and a half later, Perkins was finally diagnosed with Cushing's syndrome. In her case the rare illness was caused by a tumor on the pituitary gland, which made her body produce too much cortisol and led to her many strange symptoms. Two weeks later she underwent brain surgery to remove the tumor. When she awoke, "It was like a weight had been lifted," she recalls. "I decided right then that I was going to devote myself to helping animals and people."

Back home, Perkins faced a long recovery as her brain healed and her body chemistry returned to normal. But the animals continued to visit, and she kept up her crafting with a newfound purpose -- to turn her hobby into a career. An opportunity arrived sooner than expected. Just a few months after Perkins's surgery, an editor at a fashion magazine happened to see a dog bed she'd made as a gift for a neighbor's pug. The bed was featured in the magazine's May 1997 issue. Perkins had never sold any of her crafts before, but her company had launched -- whether she was ready or not. "The phones were ringing and buyers from Bloomingdale's were ordering," she says. She scrambled to fill those orders, then decided she'd better figure out how to really start a business. "I was the typical entrepreneur in that I didn't have a clue." Perkins spent most of 1998 and 1999 doing research and development, still filling orders from her kitchen table.

In 2000 she launched her company for real. She cashed in all her assets, traded New York City for Savannah, which was more affordable and closer to the textile mills she needed to work with, and opened up Harry Barker. "All dogs are hairy barkers," Perkins explains. Then she finally adopted a dog of her own, a sheltie-collie mix she named...Harry Barker.

Perkins not only found success in business but she also found love: She met her future husband, David Rawle, on a blind date and at 45 became a first-time bride, moving to Charleston to live with him. Today Perkins, 51, and Rawle, 66, share their home with Harry Barker and Josephine, a briard. Harry Barker, the company, has seven fulltime employees and operates out of a dog-friendly office in Charleston. The pet accessories for dogs (and, in more limited fashion, cats), such as collars and leashes, beds, toys, and treats, are available online at HarryBarker.com and in 3,500 stores internationally.

And Perkins didn't forget that promise she'd made to do good things for people and animals. This year the company launched a line of dog treats and toys that benefits therapy-dog programs at a nearby hospital. Many of Harry Barker's products are hand-packaged by adults with disabilities through a community partnership with the local disabilities board. And a good number of items are earth-friendly -- a recently introduced line of environmentally conscious collars and leashes is made out of recycled plastic bottles. But as gratifying as those do-good initiatives are, says Perkins, the real joy of her new career is all about the dogs. "There's just something about a wagging tail that makes me happy."

Originally published in Ladies' Home Journal, July 2009.

FAQ YOU: MELISSA'S MAIL BAG

I wanted to share some questions I've received from someone who is embarking on her testing and diagnostic journey. For me, it is good to share the bios of other folks because when we share details, we share ourselves. Melissa, like me, planned a wedding and struggled with the stress and LOOK of the wedding. I bailed but she finished it wmth her big wedding. Even a small piece of life like this can bring your closer to people who are like you, know what you've been through, and are therefore the best ones to take care of you as you get ready for surgery.

*******

On Jun 21, 2009, at 11:24 P, Melissa wrote:

Hey Melissa,
I wanted to say thank you so much for your help today. It was nice being able to talk with you about things, and I look forward to talking with you tomorrow. I wanted to give you a general time line of my symptoms, etc. just so it will help you know a little more about my situation. It's easier for me to type it out, I get kind of lost with it all when I talk about it sometimes.

I don't know when all of this actually started, if it is Cushings, but when I was a young girl I was always a good weight. Then in forth grade I gained fifty pounds. (Right before I gained the weight I was diagnosed with asthma, and was put on steroid inhalers- at one point I was on four different inhalers. Often had to take steroid asthma breathing treatments at hospital and eventually had to buy the machine for home. Also went on steroids for bronchitis at least twice a year.) I remember too that I had very large eyebrows, etc. and more hair than normal for that age. My hair changed texture as well, going from very straight to very frizzy. I struggled with my weight in middle school and high school. In college I was able to combine exercise with diet and maintained my weight around a size 14. When I did do a diet, like the Atkins it was successful during college . I worked at Banana Republic in college as the window display designer, and so I was very active with my job.

Once in college, went off inhalers since I wasn't at home. Did fine without them, didn't have asthma or problems like I had in high school. Weight was more easily managed.
(Off inhalers 2001-2005)

Here's my recent timeline:

2004- Size 14 and in college, started having some difficulty with concentrating in class, etc. Neck pain and fatigued more.

2005- Gained 60-70 lbs. between 2004-2005. Didn't change eating habits or lifestyle, tried to exercise more and wasn't able to lose weight. Started having mood swings more often, cried a lot. Then in Fall of 2005 started having headaches and dizziness. Almost passed out twice in classes, and had to have people walk me to a car and take me home. Doctors said it was my asthma, and put me back on inhalers (I don't know why headaches and dizziness would be considered asthma related, but I went ahead and took them. - Stopped them again in 2006) Tried Weight Watchers and Curves to lose weight, not successful.

2005-2006- Planned wedding, anxiety increased. Headaches and dizziness increased. So did fatigue and neck and jaw pain. Blurry vision, fatigued, not able to move items on the floor at work. Got married in 2006 (Fall)...had to quit job in November, would get very sick feeling, sometimes unable to get out of bed. Doctors diagnosed neck pain and headaches as "TMJ." Went to two TMJ specialists who fit me with a brace and did pain injections. Nothing helped the headaches, or pain. I was also starting to get times when my heart would race even though I didn't feel anxious. I would get a tingling or energy feeling in my muscles. Even woke up with heart racing sometimes. Heat and cold sensitive. Went to physical therapy on doctors recommendation for neck pain. Didn't help, went for over four months.

2007- Doctors tested for Lymes and MS, both were negative...they treated me for Lymes ("just in case" since I had been in a Lymes area- Wisconsin) with one month of Doxcycline. It didn't help. Daily pain. Daily headaches. Would feel shaky, and was unable to do even small tasks around the house without pain or fatigue. For about six months even blow drying my hair was hard, would get pain and fatigued doing even that. Went to Mayo Clinic, and they diagnosed it all as Myofascial Pain Syndrome and Migraines. Did not respond to migraine medicine. They also diagnosed my frequent heartburn as Gastritis. Took medicine for the heartburn, which was strong and used for ulcers and gastritis...heartburn didn't respond to the medicine after six months. They also tested my heart since it would race periodically, it checked out ok.

Found a counselor and went for a year, to deal with the chronic pain and with the situation (not having a diagnosis that fit or anything that helped). Taught me breathing techniques to help when anxiety happened.

2008- Tried Atkins diet to lose weight, wasn't successful at losing any weight even after four months. (Husband lost 15) Tried a new general doctor, who said Mayo was wrong, that since I had neck and shoulder pain that the headaches weren't migraines..they were tension headaches. Medicine still didn't help. Still fatigued, would stay up late at night. Had been doing that for a few years, where I am unable to go to sleep until 2 or 3 most nights. I will be fatigued all day, and then have more energy at night. Doctors wanted me tested for Pseudotumor Cerebri, had two spinal taps and went to neuro opthamologist. Did not have pseudo tumor. Went back to general doctor who said it was al probably Fibromyalgia and to just forget the pain, dizziness and fatigue. Insulin levels high but glucose ok. Wanted to put me on Metformin. Thyroid functions all ok.

2009- Tried cutting out most sugar to lower insulin instead of Metformin. Insulin levels are now normal. Have cut out most sugar and have not lost weight. I have cut out pop for three years, still have not lost weight. Eat mostly fruits, veggies, lean proteins, and high fiber foods. Get plenty of water. Exercise is hard, but have tried intermittently to exercise consistently over the past three years...painful and get fatigued very easily. Doesn't help me lose weight either. Went to a headache doctor who told me I have Metabolic Syndrome probably (Even though Cholesterol- ok and triglycerides- ok), wanted me to do to Atkins Diet to lose weight and said all my symptoms would just go away if I did the diet. I told him I'd tried it the year before and couldn't lose weight, plus none of my symptoms went away when I did it. He told me to try it anyways. Went back to family doctor who says it is all because I have low vitamin d and I'm overweight. Tells me since I have missed 7 of 12 periods that I probably have PCOS. I have also had pain behind my eyes and an uneasy feeling behind my eyes. Sometimes see floaters and bright spots, not in combination with a headache. I also often see greyish spots in vision. Kind of like there's a fuzzy wall between me and whatever I'm looking at... Lights at night often have a halo around them.

That's just a general time line, but when I went online to look for things with hormones and headaches Cushings came up. I hadn't heard of it. Then I read your blog and Cushings Help and things I didn't even realize were symptoms were listed. I have most of them... The staying up until 2 or 3 am...energy at night. The stretch marks. (Mine go from silver in the morning to really dark pink and purple at night - or range during the month) I have them all over. (Stomach, back, hips, chest, arms, etc.) My face has gotten more round. I have the hump. Actually quite a nice one which I just thought was normal...! :-) My weight is mostly in my stomach. I also have some hair loss...which my mom kept thinking this was all from my thyroid because of that - but my thyroid is fine. (Hair in tub and on floor, have to dust it off after styling hair) I've missed 7 of my last 12 periods. I have more facial hair than I used to...more on lip, etc. darker. I have the problems with concentration, I had to take an incomplete for the first time this semester (I'm in Grad school online through the Savannah College of Art and Design because it was the only way I could continue my education even though I feel this way). I forget what I'm going to say a lot of the time, and I have a very hard time writing papers for school...it's often hard to put information together.

One main thing you wrote is that you got pain going up the stairs. That really clicked for me, because I have a VERY unusually hard time going up stairs. I know I'm overweight but it's not just being out of breath, I get PAIN. I've tried to tell my doctors that and they tell me it's just because I'm overweight by it hurts in my neck and shoulders and head, as well as my legs, etc. Some times it even feels like a "steam pot" in my head, just like it's going to burst from pain. I get that just when I stand up some times too. Even gardening is hard, I get a lot of pain and very fatigued doing small stuff. I even have the muscle weakness, one thing that I've noticed that's really hard is pulling clothes out of the washer. My arms just kind of give out on me doing that.

Anyways,
Sorry if I've typed too much, it's just easier for me to write this all down for you. I get side tracked easily on the phone or talking with people about all of this because it's been so much.

Do you think with my history that's it's a good idea to test for Cushings? I hope I'm on the right track, but things just seemed to match the symptoms to a T. I read stuff on Cushings Help and I'm like "That's me!" It's weird. I am scared to even hope that it's an answer. I've been through so much. It's been hard being newly married and graduating from college...only to have all of this happen. I really appreciate your help, ideas, etc. I hope I can help you in any way as well. Thank you again and I look forward to talking with you tomorrow.

Melissa :-)

********************

My dear sweet Melissa.

I'm not a doctor but I play one on the internet. However, do not substitute my advice for anything that a medically trained professional might give you. Wow. Even for disclaimer purposes, that is difficult for me to say!.

You have done a wonderful thing in capturing your story, your life in writing. You took the time to write it out to me, but you will use this time and time again to tell your Cushing's story to nurses, doctors, surgeons, and future blog readers.

You are on your way to a better health already. You have taken control.

My hunch, like yours, is that you have Cushing's disease. Pituitary Cushing's because of your eye problems and headaches. But interesting to see the mix of synthetic steroids through your time line. Are you on steroids currently? We'll have to see how this plays into things. May have aggravated your pituitary Cushings.

I recommend that you begin to test for Cushing's.
Stage 1: at home or nearby: watch your symptoms and get day time tests done.

Stage 2: travel to Seattle to see a Cushing's specialist for night time testing, which is critical for showing a disruption of diurnal variations.

Do you have good insurance coverage? PPOs create less hassle for the patient, so if possible, switch that over. More expensive, but less hoops to jump. You will find this process is long and difficult anyway. If you can throw a little money at it and make stronger faster better decisions by choosing your own doctors and dropping the need for referrals, then I say do it. We switched from HMO to PPO, and it saved us time. I know it did.

My first recommendation is to call Dr William Ludlam, neuroendocrinologist at the Swedish Hospital, Cherry Hill Campus in Seattle, WA. It may take a few months to get an appointment for Camp Cushie, as he only accepts 3 patients for the week long testing spots. Set the appointment. It is worth it. Traveling there got my my highest highs in midnight cortisol and 4 am ACTHs.

Dr. Ludlam, Bill.Ludlam@swedish.org, 206-320-2800. Email him this time line and tell him of your plans to try local testing before you come out there.

I suggest making a second appointment with a more local doctor in hopes that this doctor will begin ordering some basic Cushing's tests. This will be particularly helpful in catching tests during the day. Then you go on to Ludlam and the Swedish for night time tests, since few facilities and hospitals are set up to accommodate that intensive schedule of blood draws. That office manages that process very well.

When I went to see Dr Ludlam, I went after I had initially seen a local endo. I did not get any high results from day time testing with local yokle. So, I travelled without any high results on Cushings tests. I traveled there with hope and instinct on my side. I got my highs there (4 am ACTH because tumor fires off at that time for most Cushies, they don't know why; and midnight cortisol blood and salivary).
On the plane ride home--after I got my medical records--I couldn't stop smiling.

Set appt with other recommended endocrinologist. He can order cortisol labwork (cortisol blood draws at 8 am and 4 pm on same day). Cortisol is highest at 8 am to wake you up, 4 pm cortisol is roughly half of 8 am, then cortisol levels at midnight--tested in saliva or blood serum--should be 0. Any abnormality in this pattern (also known as circadian rhythm or diurnal variation--look it up) indicates a flaw in the feedback loop of the hypothalamus-pituiatry-adrenal axis, or HPA. This means CUSHINGS.

Always make sure they do cortisol blood draws and ACTH plasma draws at the same time. You need both at each drawing. Then, make sure they process the ACTH according to specifications: click here to learn about all tests

Even if you don't know it all, learn the language. Doctors refute you less if you are knowledgable and speak their language. Read the medical literature. Discuss it with a Cushie friend. You must be able to present your case to doctors who have many other patients to see. It's your one shot to get the right information to them.

A short note about me, I think I've had a milder course of Cushing's since I was 11. That's 25 years. I plan to update my timeline going further back with photos, etc.

So, Melssa and any other newbies reading this. Here are my suggestions based on what worked for me. If you decide to travel to Seattle, there is other info I can post here about where to day for cheap (in the hospital itself--like YMCA) and how to get your records before you leave, etc. I can help, and I want to help. I hope to be online more, so my plan is to answer each of these requests as they come in. Be patient with me because my dear little Elena wants me all the time, and sometime I can entertain her in other ways... but just for short bursts of time.

OK. Sleeping meds are really fully working. Better reread this in the morning to see if I made since! Thank you Ambian 10 mg!