Mild Cortisol Increases Affect Cardiovascular Changes Linked to Heart Disease in Cushing’s

Increases in cortisol secretion, even if mild, induce early heart and blood vessel changes that may increase the risk for cardiovascular disease, according to Italian researchers.

The findings continue to support the role of the hormone cortisol in heart disease, and demonstrate the need for carefully monitoring cardiovascular risk in patients with high levels of the hormone, including those with Cushing’s disease.

The study, “Cardiovascular features of possible autonomous cortisol secretion in patients with adrenal incidentalomas,” was published in the European Journal of Endocrinology.

While most patients with adrenal incidentalomas don’t have symptoms, nearly half have excess cortisol production. Adrenal incidentalomas are masses in the adrenal glands discovered only when a patient undergoes imaging tests for another unrelated condition.

These asymptomatic, mild cortisol-producing cases are defined as possible autonomous cortisol secretion (pACS), according to the European Society of Endocrinology Guidelines.

Excess production of the hormone, seen in Cushing’s disease patients, is associated with increased mortality, mainly due to heart diseases. Patients with asymptomatic adrenal adenomas and mild cortisol secretion also have more cardiovascular events and generally die sooner than those with normal cortisol levels.

But little is known about the causes behind cardiac and vessel damage in these patients.

To shed light on this matter, a research team at Sapienza University of Rome evaluated the cardiovascular status of patients with pACS. This allowed them to study the impact of cortisol in the heart and blood vessels without the interference of other hormone and metabolic imbalances seen in Cushing’s disease.

The ERGO trial (NCT02611258) included 71 patients. All had been diagnosed with adrenal incidentalomas, 34 of which were pACS with mildly increased levels of the hormone and 37 were defined as nonfunctioning adenoma (NFA) — adrenal masses with normal hormone levels.

The two groups were very similar, with no significant differences in metabolic and cardiovascular risk factors. Adrenal lesions in the pACS group, however, were significantly bigger, which was linked to cortisol levels.

Looking at the heart morphology, researchers found that pACS patients had a significantly higher left ventricular mass index (LVMI), which is a well-established predictive measure of adverse cardiovascular events.

Further analysis revealed that LVMI scores were associated with levels of the hormone, suggesting it has an “independent effect of cortisol on cardiac function,” the researchers wrote.

Slightly more than half of pACS patients (53%) also had a thicker left ventricle, a feature that was seen only in 13.5% of NFA patients. The performance of the left ventricle during diastole (muscle relaxation) was also affected in 82.3% of pACS patients, compared to 35.1% in those with NFA.

Patients with pACS also had less flexible arteries, which may contribute to the development of vascular diseases.

The results show that “mild autonomous cortisol secretion can sustain early cardiac and vascular remodeling” in patients who appear apparently healthy, the researchers said.

“The morphological and functional cardiovascular changes observed in pACS underline the need for further studies to correctly define the long-term management of this relatively common condition,” they added.


World Kidney Day


Chronic kidney disease affects more women than men, but most people with this condition don’t know they have it. This World Kidney Day, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health, joins organizations around the world in urging women to take action to prevent kidney disease — for themselves and their loved ones.

Healthy lifestyle changes can help prevent and manage kidney disease and its main causes — diabetes and high blood pressure. One in seven Americans has chronic kidney disease, or CKD, a condition that can lead to kidney failure and means your kidneys are damaged and can’t filter blood the way they should. CKD affects 16 percent of women and 13 percent of men. Approximately 700,000 people in the United States have kidney failure treated with dialysis or a kidney transplant.

Given the impact of kidney disease on women, the NIDDK encourages all women to learn about risk factors and talk with health care professionals. Taking action now can help protect your kidneys. Here are ways to reduce your risk:

  • Choose healthier foods, such as fresh fruits, fresh or frozen vegetables, whole grains, and low-fat or fat-free dairy products.
  • Be physically active for 30 minutes or more on most days.
  • Reduce screen time, and aim for 7 to 8 hours of sleep each night.
  • Join family, friends, or coworkers in encouraging each other to stick to a healthy routine.
  • Use the NIH Body Weight Planner to help achieve and stay at a healthy weight.

NIDDK-funded research continues to examine how lifestyle changes affect kidney disease, diabetes, and more. The Chronic Renal Insufficiency Cohort(link is external) is an ongoing observational study looking at a wide spectrum of kidney disease topics, such as the risk factors for loss of kidney function and the link between kidney and heart disease. The Sit Less, Interact, Move More Intervention for Sedentary Behavior in Chronic Kidney Disease clinical trial is recruiting participants with CKD to find out whether decreasing time spent sitting and increasing walking time will result in less belly fat and improved physical function and quality of life.

The NIDDK conducts and supports research on diabetes and other endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic, and hematologic diseases. Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans. For more information about the NIDDK and its programs, visit

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit


March is Kidney Cancer Awareness Month


Kidney Cancer awareness is very important to me, because I learned I had it in 2006.

I’m pretty sure I had it before 2006 but in that year I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.


When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.


When I was diagnosed in the ER with kidney cancer, Tom’s doctor said that he could do the surgery but that he would recommend someone even more experienced, Dr. Amir Al-Juburi.


Dr. Amir Al-Juburi has been so kind to me, almost like a kindly grandfather might be, and he got rid of all 10 pounds of my cancer in addition to my kidney.


More than 12,000 people in the UK are diagnosed with kidney cancer each year, according to 2014 statistics.

And although 42% of cases are deemed “preventable”, only 50% of patients survive kidney disease for 10 or more years.  I will celebrate 12 years next month, on May 9!

It’s the seventh most common cancer in the UK and is much more prevalent in males.

But do you know the warning signs of the potentially deadly disease?

Here we reveal the 12 main symptoms of kidney cancer:

1. Blood in your pee  Not until the day I was diagnosed.

You may notice your pee is darker than normal or reddish in color. This could also be a sign of chronic kidney disease and bladder cancer.

2. A persistent pain in your lower back or side, just below your ribs No

3. A lump or swelling in your side (although kidney cancer is often too small to feel) No

4. Extreme tiredness (fatigue) Possibly, although I assumed it was from Cushing’s

5. Loss of appetite and weight loss No

6. Persistent high blood pressure Yes

7. A high temperature of 38C (100.4F) or above No

8. Night sweats No

9. In men, swelling of the veins in the testicles Nope

10. Swollen glands in your neck No

11. Bone pain No

12. Coughing up blood No

If you are concerned about any of these symptoms you should see you GP, they will carry out a series of tests, including urine and blood tests, in order to get an accurate diagnosis.

What are the treatment options?

The treatment will depend on the size and severity of the cancer and whether it has spread to other parts of the body.

These are the five main treatments:

1. Surgery to remove part or all of the affected kidney Yes, all plus some other stuff

This the main treatment for most people

2. Ablation therapies No

Where the cancerous cells are destroyed by freezing or heating them

3. Biological therapies No

Medications that help stop the cancer growing or spreading

4. Embolisation No

A procedure to cut off the blood supply to the cancer

5. Radiotherapy No

Where high-energy radiation is used to target cancer cells and relieve symptoms

For more information go to

Adapted from

Today is Rare Disease Day

rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating with a bunch of info today (and every day!)


Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency

And growth hormone deficiency

If you’re interested, you can read my bio here

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Medicare Open Enrollment Ends Tomorrow!

One Day

From October 15 to December 7 every year, the Centers for Medicare and Medicaid (CMS) gives you free reign to change your Medicare coverage. Take advantage of the Medicare Open Enrollment Period or you could be stuck with your plan for the coming year, premiums and all.


What You Can Do During Open Enrollment

Open Enrollment is your time to pick the Medicare plan that gives you the best coverage for the best price.

Here are your different options.

You can change from Original Medicare to Medicare Advantage.

  • You can switch from Original Medicare (Part A and Part B) to a Medicare Advantage plan (Part C).
  • You can switch from Original Medical to a Medicare Advantage Plan with Part D coverage (an MA-PD plan).
  • You can switch from Original Medicare plus a Part D plan to a Medicare Advantage plan.
  • You can switch from Original Medical plus a Part D plan to an MA-PD plan.

You can change from Medicare Advantage to Original Medicare.

  • You can switch from a Medicare Advantage plan to Original Medicare.
  • You can switch from a Medicare Advantage plan to Original Medicare plus a Part D plan.
  • You can switch from an MA-PD plan to Original Medicare.
  • You can switch from an MA-PD plan to Original Medicare plus a Part D plan.

You can change from Medicare Advantage to Medicare Advantage.

  • You can change from one Medicare Advantage plan to another Medicare Advantage plan.
  • You can change from a Medicare Advantage plan to an MA-PD plan.
  • You can change from one MA-PD plan to another MA-PD plan.
  • You can change from an MA-PD plan to a Medicare Advantage plan.

You can change your prescription drug coverage.

  • You can sign up for a Part D plan.
  • You can switch from one Part D plan to another Part D plan.
  • You can cancel your Part D coverage.

What You Cannot Do During Open Enrollment

Open Enrollment has its limits. You cannot enroll in Original Medicare for the first time or sign up for Part B, even if you already have Part A.

You need to sign up for Part A and/or Part B during your Initial Enrollment Period (IEP). The IEP is based on age and begins three months before and end three months after your 65th birthday.

Alternatively, if you have insurance through an employer, you may be able to delay your initial enrollment. This is only the case if the company you work for employs at least 20 full-time employees. Your special enrollment period begins when you leave your job or you lose your employer-sponsored health coverage, whichever comes first, and lasts for eight months.

If you miss your Initial Enrollment Period, you need to wait until the General Enrollment Period to sign up for Part A and/or Part B. The General Enrollment Period happens once a year from January 1 to March 31.

Giving Thanks…

From the Giving Thanks series at

Today I am hugely thankful that the last major issue we had here was in 2013 when Tom had his heart attack.  That event caused me to start this new blog to post about our experiences.





January 27, 2013 was our 40th anniversary.  DH called me and said he was leaving a conference in Washington, DC and we’d go out to brunch when he got home.

The next thing I had heard was that he was in the ER with a suspected heart attack.  I rushed to the ER and found him in his cubicle.  He’d had 3 nitroglycerine pills by then and figured he could go home.

Wrong!  They had him stay overnight at the hospital.  January 28th, they decided to send him by ambulance to Fairfax Hospital for a cardiac catheterization and possible stent.

At the end of that, the surgeon came into my waiting room and said that he needed triple bypass NOW.  Three of the arteries were 100% blocked.  They got me calmed down to see him in the OR.

He was trying to get odds of not doing this surgery and just leaving then.  Finally, I said that he would do this surgery, we weren’t going to fool with this.

I really lost it when they asked me if we had any children and I said 1 son in NYC.  They called him at work in New York and had him get there as soon as possible.  I’m sure he could hear the fear in my voice.

They wheeled DH off for surgery and I waited again.  Luckily, 2 church friends came and sat with me and our pastor arrived about 8:00PM.  Our son arrived about 8:30PM after taking the Acela and a taxi directly to the hospital.

The surgery was over about 9:00PM but when we saw Tom, he was still under anesthesia.  They kept him that way until the next morning since he was too confused when they woke him up.

Long story short (too late!) – he got out of the hospital on the 31st and I played nurse 24/7.   He couldn’t drive/go anywhere for 6 weeks, and then there were 12 weeks of cardiac rehab.

One of the things that came out or cardiac rehab was becoming friendly with 2 other couples (although one of them has since split up).  We go out to dinner every couple months…and none of the surgeons would be happy about our choices.




A slightly different take on the events, written 3 weeks later on the same blog.

Icy Days and Mondays…*

* With apologies to Karen Carpenter!

I know I’m not supposed to “relive” events.  I have done that too often with my Cushing’s and cancer adventures and I’m told that reliving causes nearly as much stress as the original event.

So, I plan to write down my memories here and try to let them go…

It all started on Sunday, January 27, 2013 – our 40th wedding anniversary.  I picked up my mom and went to church so I could sing in the choir.  DH went to a meeting of some sort on Benghazi.

After church, I stopped off in the church office for a goodie bag that the Staff Parish Committee had left.

Dropped my mom off at her house and went home.  I put the goodie bag on the dining room table and logged onto the computer to do some work.

I got a couple text messages from DH:

Text message

I figured I’d take a nap until DH came home for that late brunch.

The next thing I hear was my phone ringing, a call from DH.  He was in the ER at Fair Oaks with a heart attack.  OMG!

I immediately leaped up and rushed out the door.  I called one of my pastors and got to the ER in record time.   When I arrived, he was in a bed, all hooked up to monitors, fluids and such.  He was awake and feeling pretty well thanks to the nitroglycerine they had given him immediately after arrival.

When we had a chance to talk, it turned out that he had been in his conference and realized his chest was getting tight.  He found the hotel’s store and bought aspirin – 3 for $11.00 which he thought was extravagant.  He bought them and took them anyway – and probably saved his life.

On the way home, he was feeling pretty good so he stopped at the mall to buy an anniversary gift.  The salesgirl in Zales didn’t know that ruby was the stone for the 40th anniversary and was kind of ribbing DH for waiting until the last minute to buy a gift.  He walked out of there, felt more tightness and headed to the ER…where he called me.

DH was feeling pretty well thanks to the nitroglycerin and aspirin plus whatever else they had in the IV and wanted to go home.  The staff said no way – he had to stay overnight so he could be monitored.

The “automatic clock” on the wall said it was Monday.  Other rooms said Sunday.  Hmmm

A trainee EMT came in to ask some questions as part of his learning process.  Every time DH mentioned the word “Benghazi”, his blood pressure spiked about 40 points or so.  That term became verboten ever after.

My pastor stopped by and we had some nice chats and prayers.

Time passed, tests were done, doctors and nurses stopped by.  Finally, DH was moved to his room upstairs.

About 9 or so I went home and found our dog huddled by the front door – I had left so quickly I hadn’t left her any lights on.  I imagine she was quite worried.

I can’t even remember what I had to eat for dinner but I really wanted something chocolate.  On a whim, I looked in that goodie bag and there was a double-sized brownie.  I think I ate that in record time and it really hit the spot.



Monday morning (for real!), I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.

Next thing I knew, I had fallen on one knee, my cell phone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.  Luckily, I hadn’t let go of the dog’s leash.

I ended up sitting in a puddle of icy water for a long time, figuring out how to get up.  I finally sort of crawled up the trash can that was sitting in the driveway.

The dog had an abbreviated walk, I changed my wet, cold clothes and headed to the hospital.  I was showing DH my knee and one of the staff bandaged it up for me.  I told him I hadn’t fallen at the hospital and wouldn’t sue but I guess he wanted to be sure.

(Today, Monday February 18, my knee still has a huge lump under the skin and hurts when I touch it, although I’m no longer limping,  The bruise/pain from cell phone finally went away)

The hospital staff decided DH should go to another hospital which is world renowned for its work with heart cases to have a heart catheterization and possible stent.  DH was ready to walk out to my car to drive him to Fairfax Hospital.  He wasn’t thrilled when he was strapped to a gurney and out to an ambulance instead.

I headed over in my car.  They’d changed the entrances to the hospital since the last time I was there and I couldn’t find the “Grey Entrance”.  Finally, after wandering around for a long time, I found it.

I saw DH in the prep room where they got him ready for the heart catheterization – then they rolled him away after explaining all the things that could go wrong.

I went out to the waiting room, got some coffee and a sandwich and hunkered down with my iPad.

Eventually, my beeper went off and I was called back to the room where DH had been prepped.  The surgeon was there this time.  She said that 3 arteries were nearly 100% blocked and they needed to do emergency triple bypass.  They also needed me to convince DH of this since he was figuring he could tough it out.

I started crying but she said I had to get myself together and convince him NOW.  I had to put on scrubs and off I went to the OR.  I got there, DH was on the table trying to figure out the odds if he didn’t do this surgery.  All the medical staff said that he had  a very low chance of survival without the operation.  He still wasn’t sure.  He wasn’t afraid to die.  Tough Guy, Yadda Yadda.

One of the nurses asked me if we had any kids.  I said only one, in NYC.  She said I should call him and get him here ASAP.  She even dialed the number.  I talked to DS at work and he agreed to come right away.  He was pretty scared, too.  He later revealed that he had been crying on the train ride.

I went back to the OR, told DH that DS was coming and that he was going to do the surgery like it or not.  I signed the paperwork and sent him to a very scary surgery.

It was about 4:30 by then and I needed to take the dog out again.  They said I could go home – surgery wouldn’t be over until about 8:00PM or so. Got home, took the dog, made sure that there were lights on, and headed back to the hospital.  Another pastor from my church called.  He said he’d be by the waiting room later.

Two friends from the church office texted me to say they were coming over to sit with me in the waiting room.  They got there about 6:30 and we decided food might be a good thing.  We headed out, following a variety of directions and signs and walked for a l-o-n-g time.

My knee was killing me.  We got to the cafeteria and found out that it was closed.  the 24-hour one was elsewhere.  We finally found that, got some food and my cellphone rang.  The surgeon would be coming out soon to talk to me.

We hustled back to the waiting room and the surgeon came out about 8:00 with good news.  Successful surgery!  DH wasn’t awake yet but we could see him about 9:00PM.

The pastor arrived about 8:30, then DS got there about 8:45.  Finally, they said we could see DH although he still was asleep.  My friends left, pastor and DS went in to see him in ICU, sleeping so peacefully with so many lines attached.  The pastor prayed, then left.  DS and I decided to stay to see DH awake.

About an hour later, the ICU tech said they were going to keep him asleep overnight so we went home.


Tuesday, January 29 – DS called the hospital fairly early and found that DH was still a bit agitated so they were keeping him under a bit. I took the dog out and we got ready to head back.

I got a call that he was waking up but agitated.  He kept fighting with the nurses on the day of the week.  He kept saying it was Monday, even though it was Tuesday.  Surprise, surprise.  The calendar on the wall hadn’t been changed.  It still read Monday.  No wonder that’s what he thought!

We stayed all day, though nurses, techs, doctor visits and such.  He was in ICU so was monitored very well.  DH was quite confused and repeated himself a lot.  He wasn’t quite sure what had happened.



Wednesday, January 30.  DH had been moved from ICU into a regular room and we had to follow visiting hours, even though we were family.  We could visit at 11 and had to leave at 1, then back for 6-8.  Actually, this worked out well since I was able to take my first nap since this whole ordeal began.

DH had called DS early in the morning and  said he “needed” his cell phone to make some work calls.  Luckily, DS talked him out of that, saying that he could say some wrong things, given his temporary memory issues.  Thank goodness!  I didn’t want him spending his days talking on the phone.

We got there about 10:45am and they still wouldn’t let us in due to “flu season”.  I’m not sure how we could give him the flu in those 15 minutes before official visiting hours.

I glanced at the whiteboard on the wall where the nurses’ names, doctor’s name and such were written.  Unfortunately, no one had changed this whiteboard since Monday, so that’s what it still said.  <sigh>

We visited – DH got to eat a bit and had started having lines removed.  He thought he might put his shorts on so went into the bathroom to do that.  Unfortunately, he managed to pull the IV out of his hand and bled quite a bit.  The nurse sent him back to bed and said no more of that!

A representative from the group Mended Hearts stopped by with information and a heart-shaped pillow.  They have meetings the first Saturday of the month, so we might go to some of those.

The first pastor dropped by again and we made plans for Friday to pick up DH’s car which was still at the ER.  No one else I know could get it – it’s a standard shift car.

Not much else – visiting, napping, improvements every day.

Not Monday

Finally, it’s not Monday!  Nowhere, nohow.  Just Thursday, January 31 after 4 days of Monday.  Hooray!

DS had a headache so I went to the hospital alone.  He was going to come for the nighttime visiting hours.  As it happened, DH came home this day after lots of testing, last minute X-Ray, discharge notes, complaints about the night nurse…

We got home about 5:00PM.  Yea!

Now the real work began – visiting nurses, medications, doctor visits, rehab.

Since it’s no longer Monday, this post is over 🙂



Whew!  There was a lot more after the surgery – visiting nurses, cardiac rehab, so on and on.

I am hugely thankful for my pastors, friends, family, people who brought us dinners, all the doctors, nurses, surgeons, visiting nurses, rehab personal, Mended Hearts, ambulance folks, aspirin, nitroglycerin, insurance, Fair Oaks Hospital, Fairfax Hospital, everyone involved in any way with this escapade.



30 Years Cushing’s Free!


Today is the 30th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at