Sunday, March 31, 2013

Endoscopic v. Microscopic pituitary surgery

I am learning new things about Cushing's even six years after first seeing the word in print. I did not fully understand the surgical difference and thus possible benefits of endoscopic surgery. For the life of me, I can't remember which I had on my two surgeries, and not much slips by me. I feel like neurosurgeons and even endocrinologists don't emphasize this difference. This made other patients and me believe we were getting the same surgery while at different facilities, but we are not.

As I continue to determine my next step for treatment after two failed pituitary surgeries and six long years seeking diagnosis and treatment, my mind gets tangled in all the unknowns. I wonder what small change could have led to cure. It might not be helpful, but it does keep me researching and sharing what I find here.

Patient's Symptoms Of Cushing's Disease

Beginning To Abate After

Endoscopic Pituitary Cure

http://www.medicalnewstoday.com/releases/90154.php

Sunday, March 24, 2013

How chronic pain has made me happier

The difficulty in recovering from Cushing's is that for some, it fails to leave us -- despite multiple surgeries or even cortisol-lowering drug therapies. I have room for improvement in this area.

In the article below, Rob Heaton offers an insightful look into chronic pain, and he captures the feelings and emotions surrounding those issues well and turns them into happiness.

When Rob Heaton say chronic pain is like mental illness, I want to add the uncured Cushing's often causes chronic pain and mental illness.

I'll share this short excerpt with you, then please read the entire piece regarding how Rob got happy with chronic pain.

"Chronic pain is like mental illness. It is a squeamish, taboo class of affliction that few people know how to deal with, so you and others dance around the issue and you don't have to admit to any fragility."

How chronic pain has made me happier | Robert Heaton

http://lifehacker.com/5991778/

http://robertheaton.com/

Saturday, March 16, 2013

Cortisol and Tinnitus

I had my second pituitary tumor resection surgery done at MD Anderson Cancer Center on April 20, 2011. My ears have been ringing with tinnitus ever since. My first evening I awoke after being in recovery, I asked my husband to close the curtains to block out the light and try to be quiet. All sound was bothering me. I woke a little later to see my mother and two sisters whispering in the room. They had come to see me after surgery and my husband relayed my requests. When i returned home, my husband hammered blankets across our bedroom windows to block out sunlight and noise. It was nearly blacked out, and it was my favorite part of the house and vital to my recovery after surgery.

Even today though, I don't like a lot of noise or light in the house. My windows are covered with different blankets but still blacked out. While my husband is at work, I keep the TV off. I hate all the chattering and noise from commercials. I don't listen to music in the car anymore. It's too noisy. I hate it. Yes, this classically-trained-vehicle-singer no longer likes it or does it. My radio is off while on the road.

Since my surgery, for nearly two years, I

have faced tinnitus on a daily basis--loud nonstop buzzing. It is not pulsatile with my heart beat (like another cause of tinnitus). It is not localized in my ears. It is difficult to describe, but I feel like I am wearing a headband that buzzes. I hear the buzzing in both ears, around the top of my head and through my brain. Tonight it is so loud, it sounds like a bug zapper.

I have mentioned my tinnitus to several endocrinologists and neurosurgeons. None have asked follow up questions and none have related it to my fluctuating adrenal hormones. Last week, one stated it was unrelated to the pituitary.

Then I find this article below which states:

"Tinnitus is a frequent, debilitating hearing disorder associated with severe emotional and psychological suffering. Although a link between stress and tinnitus has been widely recognized, the empirical evidence is scant."

Why can't my doctors help me? Why don't they know what I stumble across on the Internet as medical fact? Why must I continue to put the pieces together for them to see the diagnostic picture? The Art of Diagnosis is not only exhausting me; it is draining my life light right out of me.

When will someone sweep me off my crippled feet and discover the treatment that will return me to my vibrant self?

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

BMC Ear, Nose and Throat Disorders 2012, 12:4 doi:10.1186/1472-6815-12-4

Cortisol suppression and hearing thresholds in tinnitus after low-dose dexamethasone challenge

Veerle L Simoens^1,^2,³ and Sylvie Hébert^3,^4,⁵^*

* Corresponding author: Sylvie HébertSylvie.hebert@umontreal.ca

Background

Tinnitus is a frequent, debilitating hearing disorder associated with severe emotional and psychological suffering. Although a link between stress and tinnitus has been widely recognized, the empirical evidence is scant. Our aims were to test for dysregulation of the stress-related hypothalamus-pituitary adrenal (HPA) axis in tinnitus and to examine ear sensitivity variations with cortisol manipulation.

Methods

Twenty-one tinnitus participants and 21 controls comparable in age, education, and overall health status but without tinnitus underwent basal cortisol assessments on three non-consecutive days and took 0.5 mg of dexamethasone (DEX) at 23:00 on the first day. Cortisol levels were measured hourly the next morning. Detection and discomfort hearing thresholds were measured before and after dexamethasone suppression test.

Results

Both groups displayed similar basal cortisol levels, but tinnitus participants showed stronger and longer-lasting cortisol suppression after DEX administration. Suppression was unrelated to hearing loss. Discomfort threshold was lower after cortisol suppression in tinnitus ears.

Conclusions

Our findings suggest heightened glucocorticoid sensitivity in tinnitus in terms of an abnormally strong glucocorticoid receptor (GR)-mediated HPA-axis feedback (despite a normal mineralocorticoid receptor (MR)-mediated tone) and lower tolerance for sound loudness with suppressed cortisol levels. Long-term stress exposure and its deleterious effects therefore constitute an important predisposing factor for, or a significant pathological consequence of, this debilitating hearing disorder.

******

FREE: The electronic version of this article is the complete one and can be found at:

http://www.biomedcentral.com/1472-6815/12/4

Monday, March 4, 2013

Reoccurrence: A Cushie's Worst Nightmare

Hooray. You somehow heard the word

Cushing's. Someone finally ran the right tests at the right time. You finally got some highs in cortisol and low ACTH (adrenal tumor) or high ACTH (pituitary tumor). A little spot doesn't light up on your mri ("hypointensity") and it is suspicious for a tumor. Ah ha. This is your surgical target.You finally found a genius neurosurgeon but s/he is three states away from you. You organize coverage for the house and kids while your parents and spouse go off to surgery with you. You are finally getting a surgery. You can believe it is finally happening. You wonder if you will every make it out alive and in what condition, what cortisol condition.

Within a week or a few months, you start suspecting a reoccurrence. This is so unfair. You had surgery yet you still have Cushing's. Returning symptoms don't lie. Lab values don't lie. Doctors even neurosurgeons don't often know what to do with you-- they said they got all the tumor out, so... ? They don't understand why the labwork shows high cortisol and high ACTH, I mean, they removed pituitary tumor out of your head!

This is one of many moments of true despair in a Cushie's life.

Every Cushing's patient worries about it, and most doctors deny it even is possible. "One surgery will remove the tumor and you'll be back to normal. No problem."

Yeah, we wish.

This article gives some parameters for

post op ACTH levels - not just cortisol - that may indicate a cure versus the dreaded reoccurrence.

All Cushies study articles like this, hoping that their post op numbers fall within the magical range of cured Cushies. We are looking for hope even when there is none to be found.

Note: this is a small study with only 55 patients. Not a large sample size, but hey. Maybe they are on to something.

------------------

Recurrences of ACTH-Secreting Adenomas After Pituitary Adenomectomy Can Be Accurately Predicted by Perioperative Measurements of Plasma ACTH Levels

Received November 15, 2012.
Accepted February 4, 2013.

Authors

Division of Clinical and Molecular Endocrinology, Department of Neurological Surgery, University Hospitals Case Medical Center, Louis Stokes Cleveland Veterans Medical Center And Case Western Reserve University, Cleveland, Ohio 44106

Address all correspondence and requests for reprints to: Baha M. Arafah, MD, Division of Clinical and Molecular Endocrinology, University Hospitals Case Medical Center, 11100 Euclid Avenue, Cleveland, Ohio 44106. E-mail:baha.arafah@case.edu.

Abstract

Background: Adenomectomy is the treatment of choice for ACTH-secreting adenomas. Although the development of ACTH deficiency immediately after adenomectomy suggests surgical success, disease recurrence was reported in patients who developed hypocortisolism postoperatively. In the current study, we examined the value of measuring perioperative plasma ACTH and cortisol levels in predicting disease recurrence of patients with ACTH-secreting adenomas.

Methods: Consecutive patients (n = 55; 41 females, 14 males) with clinical, biochemical, and histological documentation of ACTH-secreting adenomas were investigated after pituitary adenomectomy. All patients were followed with clinical monitoring and frequent measurements of plasma ACTH and serum cortisol levels, and none received glucocorticoids unless or until they developed symptoms of adrenal insufficiency or when their serum cortisol levels were ≤3 μg/dL.

Results: Postoperative serum cortisol levels reached ≤3 μg/dL in 46 of 55 and were ≥4 μg/dL in the remaining 9. Simultaneously measured plasma ACTH levels in the latter 9 patients were >40 ng/L when the serum cortisol reached its nadir. In contrast, among the 46 patients who had serum cortisol levels of ≤3 μg/dL, plasma ACTH levels measured simultaneously were ≤20 ng/L in 38 of 46 and >20 ng/L in the remaining 8. During a mean follow-up period of nearly 7 years, patients who had a nadir plasma ACTH of >20 ng/L developed recurrences even though their postoperative serum cortisol levels were ≤3 μg/dL.

Conclusions: Despite profound hypocortisolemia after adenomectomy, a simultaneously measured plasma ACTH level of >20 ng/L in the perioperative period is highly predictive of future recurrence of ACTH-secreting adenomas.

Received November 15, 2012.
Accepted February 4, 2013.

Published online before printFebruary 28, 2013, doi:10.1210/jc.2012-3910 The Journal of Clinical Endocrinology & Metabolism February 28, 2013 jc.2012-3910

http://m.jcem.endojournals.org/content/early/2013/02/28/jc.2012-3910.abstract

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Disclaimer: I Am Not a Doctor

I am not a medical professional. I am not a doctor nor have I gone to med school. I am not a physician assistant, a nurse, or a lab technician. I do not currently work in the medical field.

Perhaps what I can provide is actually better and more useful: a tale of odd symptoms, mild physical deformities, and emotional/mental experiences that match your own. It's not just you! I can share my experience in the diagnosis and treatment of my Cushing's disease. Due to this disease's 'rarity,' I relied on my Cushie friends to guide me as we fight this terrible disease. We all quickly learned the basics and the jargon: the body parts, hormone loops, testing protocals, surgical stats, surgeon bios and pedigrees, and paths to recovery. We have seen patients have successful surgeries, and we have seen patients continue to suffer after multiple surgeries. We watch the story of Cushing's unfold for our friends in real time. Our friends are case studies that are unimpressed by whether something meets the standard of 'statistically significant' to be included in the medical literature. We Cushies see and hear it all. We encourage you to grow the same eyes and ears.

We urge you to take an active role in your health care and work closely with medical professionals. If you find a doctor dismissive, find a new one. Use my blog to supplement your knowledge base but never substitute my judgment or decisions for your own.

And please, don't sue me. I have no money left over after medical expenses. One day, I swear, I'm gonna take a nice vacation.

WHERE TO START IF YOU ARE NEW?

This side bar is intended to be a mini Cushings 101. You will find much of what you need to know here. Click through these links and watch these videos. They are my favorites after researching for Cushing's for six full years now. I started this blog in 2008, so the broad view posts about me can be found there. Click around previous blog posts and read, read, read. You will get scared and overwhelmed, but with information, you will start to take charge of your health and you will arm yourself with what you need to win this war. Because you will, you know. You will win this war.

M o x i e_F a v o r i t e s :

* Moxie's Tips to Diagnosis

* Initial Work up for Cushing's

* Comprehensive symptoms list

* Can your cooking pots be the cause of Cushing's?

* Cushing's for the new folks

* Cushing's patients often need multiple surgeries

* What People Need to Know about Cushing's Awareness Month

* Cushing's symptom list, dates, pain scale

* PNA's Pituitary Patients' Bill of Rights

* Cushies describe Cushing's

* Listen to 3 call-in talk shows with Cushing's expert Dr. Friedman

* Listen to Dr. Friedman's 4th call-in show about medical therapies

Symptoms of Cushing's

**You can have Cushing's even if you don't have all of these symptoms**
Anxiety
Irritability
Extreme mood swings and rage, gets confused with bi-polar
Medication-resistant depression
Sensitivity to loud sounds and light
Absent sex drive
Facial redness
Rounding of the face (moon face)
Unexplained weight gain around belly
Buffalo hump, or hump on back of neck
Pink or purple stretch marks
Thicker or more visible body and facial hair
Acne
Muscle weakness
Extreme fatigue
Thin and fragile skin that bruises easily
Slow healing of cuts, insect bites and infections
Bone thinning
Recurrent infections
Sleep disturbances, night sweats, awake at midnight or 4 am
High blood pressure
Diabetes mellitus
Irregular or absent menstrual periods in females

~BEST ADVICE BASED ON MY EXPERIENCE~

This disease is an enigma - a mystery wrapped in a riddle.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high versus low, and frankly, it is quite unfair that we should have to know. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure whether the cortisol is high or low. I hope the Addison's community will take the lead on that!

I encourage you to test your cortisol testing every night in a row until you get your highs. Do not skip.
1) Do 24 hour UFCs with 17-OHS.
2) Get cortisol blood draws at midnight and again 30 minutes later.
3) Chew a salivary cortisol test swab while getting your blood drawn each time.

I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. Take control. Your mission is to show up every night, and hang in there.

TRUST YOUR GUT. It just might save your life.

I am a cyclical Cushing's patient. I had transsphenoidal pituitary brain surgery on June 11, 2009. By going through my nose with scopes and scalpels, my neurosurgeon removed a 3 millimeter ACTH-secreting benign tumor on the left pituitary that disrupted every hormone and every body system. He says the tumor's cytology was consistent with other Cushing's tumors he has removed in the past, meaning that he removed a milky white substance that was different looking that the normal pinkish pituitary gland cells. Within 3 months of my surgery, I knew I was not cured. I still had Cushing's symptoms, and I tested again for a re-occurrence of Cushing's. In 2010 alone, F*I*V*E endocrinologists told me I don't have Cushing's and they think I never did. They said I had pituitary surgery for nothing. That includes two that I saw before my pituitary surgery. It seems doctors really don't know what to do with a Cushing's patient, much less one that comes back still sick after pituitary surgery.

In February 2011, I tested again at my local hospital, and I hit the jackpot: the highest results for midnight cortisol serums and midnight cortisol salivas that I have had in nearly 4 years. I also had nine straight days of high 17-OHS (used to measure urinary cortisol in patients with mild or cyclical Cushing's). I had diagnostic results on three types of cortisol tests: midnight salivary cortisol, midnight cortisol serum, urinary 17-OHS.

I had a 2nd pituitary surgery on April 20, 2011. The neurosurgeon removed a 5-millimeter benign tumor from the right side of my pituitary. I still suffer from high cortisol and high ACTH, with the latter pinpointing the source as pituitary. No tumor shows on my MRI so in August 2012 I started a medical therapy by taking a well-established medication called ketoconazole. This has helped me reverse some but not all of the Cushing's symptoms. Keto can cause liver damage so I must have liver function tests every three months. I hope I can continue to tolerate this medication until a tumor shows. Next MRI scheduled for June 2013.

WHAT DID I LEARN?
Rather than test once in a while, I tested every day. My results clearly showed I had an abnormal cortisol production pattern. I was right. Those doctors were wrong. ALL OF THEM WERE WRONG. Trust your gut. You know your body.

What Doctors Will Claim You Have Instead of Cushing's:

Obesity (lose weight, lose symptoms)
Polycystic ovarian syndrome (PCOS)
Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)
Back and muscle pain
Diabetes
Blurred vision, visual field loss, double vision
Chronic fatigue syndrome
Dry, oily, or sweaty skin
Impotence or infertility
Joint pain, joint/bone abnormalities
Migraines
Muscle weakness, carpal tunnel syndrome
Temporomandibular joint/TMJ/jaw joint pain
Thyroid imbalance or "slow metabolism"

Is it possible you have many conditions damaging your body simultaneously? Sure. Is it more likely that you have ONE condition that explains all that ails you? Yes. That could be Cushing's.

In medical school, doctors are trained that it is better to find one diagnosis to fit all symptoms. Go ahead and ask your doctor about that when s/he tells you that you have multiple overlapping illnesses.

Once you get abnormally high biochemical evidence (ACTH and cortisol) in the form of urine, saliva, and/or blood tests, it is highly probable you have Cushing's. Trust your instincts. Don't let the doctors tell you differently.

Different Doctors Treat Symptoms of Cushing's: A List of Professionals You May Have Seen

The pituitary controls the production of every hormone in the body. We Cushies go undiagnosed as we bounce around from medical subfield to subfield. Each doc treats the symptoms they know best, while piling on the medication.
We Cushies later find that our constellation of symptoms are punctuated with abnormal test results hidden away in our patient charts. No one told us. Since our medical history stays with the office not the patient, one change in doctor leaves these clues to diagnosis behind.
This is why I suggest you take a list of symptoms to every appointment. You won't be boxed in by narrowly-focused questions based on one field of medicine, but you can instead partner with your doctors and discuss your symptoms list so you can get the care you deserve.
DON'T GET STUCK SEEING A SPECIALIST WHO TREATS ONLY ONE BODY SYSTEM. CUSHING'S AFFECTS THEM ALL.
Endocrine:: Thyroid problems and diabetes (many have this, caused by Cushing's)
Orthopedics :: joint pain, joint/bone abnormalities, Plain ol' back and muscle pain (caused by Cushing's)
Dermatology :: dry, oily, diaphoretic skin
Ophthalmology :: blurred vision, visual field loss, diplopia
Neurology :: headache, proximal muscle weakness, carpal tunnel syndrome
Urology :: impotence, hypogonadism
Obstetrics and Gynecology :: galactorrhea, menstrual irregularities, infertility, hirsutism, polycystic ovarian syndrome (PCOS)
Fibromyalgia (no lab tests can prove this, given when they don't know what else is wrong with you)
Don't bounce around. See an endocrinologist. Show them you are an informed patient. Don't let them turn you away to suffer.Get yourself help. Demand it, if you must. Don't give up.

DISCLAIMER: ME AND MY CORCEPT

I want to disclose my relationship with Corcept Therapeutics. I participated in their market research study in Philadelphia, CA in February 2012. I gave feedback on marketing material and told my story on camera for internal educational use. Corcept paid for my travel expenses. In July 2012, I met the Cushing's advocate and nurse at the MAGIC Convention in Chicago. We shared a meal as a group, and she kindly paid for our dinner. In addition, I hold stock in Corcept Therapeutics; not because I am rich, but because I have Cushing's.

Please rest assured that this affiliation will never compromise my intent to bring patients all information I can get my hands on to help them on their road to diagnosis and recovery. You have my word.