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Giving Thanks for Cushing’s!

November 23, 2023

MaryO MaryO, Pituitary , , , 2 Comments

I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now.

 

Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make phone calls. It brought me a lot of new friends.

 

I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment. Things have changed a lot since my surgery November 3, 1987!

 

 

When I had my Cushing’s over 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

 

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting hundreds of other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more Cushies than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

 

I don’t know what pushed me in 1983 when I first noticed I was sick, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m thankful that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

 

Bridget H, Ectopic Cushing’s

November 13, 2023

MaryO Ectopic, Lung Surgery, Success Stories, Treatments , , , , Leave a comment

 

For years, Bridget Houser experienced a number of symptoms, including mysterious weight gain and headaches, that gradually got worse over time. But while many doctors attributed the symptoms to stress, tests ultimately revealed Houser had a serious illness, Sandra Boodman reports for the Washington Post.

What was causing these symptoms?

Houser had never struggled with her weight before, but she noticed in 2018, months before her wedding, it was starting to increase. In response, she increased the intensity of her workouts and cut her food intake. But still, her weight continued to increase.

Houser wondered if her weight gain was linked to other problems she had experienced in the past. In 2016, Houser started experiencing daily pain in the back of her head, and after the headaches failed to improve after changing her diet and using nonprescription pain relievers, Houser spoke to her primary care doctor and a neurologist.

She noticed the headaches were worse when she wore contact lenses. “It was affecting my daily life and I talked myself into thinking the problem was my contacts,” she said. As a result, she got Lasik surgery, which helped improve her vision and cured her headaches for about a week until they returned.

Months later, Houser said she developed “really bad anxiety. It wasn’t just like I was anxious,” she said. “I couldn’t function. I’m Type A so I knew what anxiety is, but not to this degree.”

In 2018, she spoke to a psychiatrist and a therapist. The psychiatrist noted Houser’s upcoming wedding, saying the event can cause “huge anxiety.” Houser started taking an antidepressant as well as Ativan, an anti-anxiety drug.

While Houser’s weight was in the normal range, she still couldn’t figure out why it was continuing to increase, despite changing her diet and workout. She also noticed her hair, which was typically thick, had thinned so much that her hairdresser suggested she see a doctor.

Houser’s psychiatrist suggested the hair loss could be related to her antidepressant and switched her medication, but that didn’t change anything.

Following Houser’s wedding, she started feeling worse, developing severe insomnia, night sweats, and acne. In February 2019, a nurse practitioner at Houser’s primary care practice ordered thyroid tests, which came back normal, and referred Houser to an endocrinologist, who told Houser she was stressed.

Houser then saw a second endocrinologist who agreed with the first one. “She said, ‘I don’t think there’s anything wrong with you,'” Houser said. The second endocrinologist’s nurse suggested getting married may be causing stress. “She said, ‘I knew on my honeymoon I shouldn’t have gotten married,'” Houser remembered her saying. “‘Are you in a happy marriage?’ I couldn’t believe it.”

Finally, a diagnosis

In addition to testing her thyroid, Houser’s nurse practitioner suggested measuring her cortisol levels. Cortisol is a hormone produced by the body in response to stress and other things. Elevated cortisol levels can be indicative of Cushing’s syndrome, an uncommon hormonal disorder that typically results from a tumor, in which the body produces too much cortisol over a long period.

“She had thrown cortisol testing out there and I think it was always in the back of my mind,” Houser said.

There are various forms of Cushing’s syndrome — the tumors that cause them are typically benign but can sometimes be cancerous and are usually located in the pituitary or adrenal gland, Boodman reports. Sometimes those tumors can develop somewhere else in the body, like the lungs or pancreas. The disease affects around five times as many women as men, usually occurring between the ages of 30 and 50, and can be fatal if left untreated.

Houser asked the second endocrinologist to order cortisol tests. The doctor agreed to the tests but said she didn’t believe Houser had Cushing’s because she lacked the classic symptoms of the disease, which include major weight gain, purple stretch marks, and a fatty lump between the shoulders. Other symptoms of Cushing’s can include insomnia, headaches, acne, and anxiety, Boodman reports. However, Houser did have the “moon face” that is seen in people with Cushing’s.

A series of tests revealed elevated cortisol levels in Houser’s blood, urine, and saliva, with her urine having cortisol levels eight times higher than normal. The endocrinologist diagnosed Houser with Cushing’s and sent her to James Findling, an endocrinologist in Milwaukee who is internationally known for his treatment of Cushing’s.

Findling ordered a dotatate PET scan to find where Houser’s tumor was, finding it in her left lung. Ultimately, after much deliberation, Houser elected to undergo surgery to remove part of her left lung. A pathologist found the tumor was a rare, slow-growing neuroendocrine lung cancer known as bronchial carcinoid, which can cause Cushing’s.

“Fortunately, I think we got it early,” Findling said. “She’s had a sustained remission and a cure of her Cushing’s.”

Why did it take so long to diagnose?

Findling estimates he’s treated as many as 2,000 people with Cushing’s in his 40-year career, and noted that delayed diagnosis is common, because physical changes and other Cushing’s symptoms are gradual.

Findling said that, while doctors are taught that Cushing’s is a rare disease, it isn’t, noting a 2016 study that found 26 of 353 endocrinology patients had the disease.

Descriptions of the disease in textbooks, including the presence of purple stretch marks and a hump, are “almost a caricature,” Findling said. “It’s pretty well recognized that Cushing’s is more subtle than that … and can cause neuropsychiatric and neurocognitive problems.”

Findling also noted that Houser “didn’t look like the typical Cushing’s patient. She wasn’t obese and she didn’t have diabetes or hypertension. It was more subtle than many cases.” It’s possible Houser’s normal weight and lack of hypertension or diabetes could have misled doctors, Findling said.

“I think we’ve moved the needle a little bit, especially among endocrinologists,” he said, adding that “the threshold for screening has got to change. Once you tell a primary care doctor that it’s a rare disorder, it goes in one ear and out the other. They think they’ll never see it.” (Boodman, Washington Post, 10/7)

Adapted from https://www.advisory.com/daily-briefing/2023/10/20/cushings

MaryO, 35th Pituitary Surgery Anniversary

November 3, 2023

MaryO Adrenal Insufficiency, Cancer, Golden Oldies, Growth Hormone Deficiency, MaryO, Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Treatments, Update , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Today is the 35th anniversary of my pituitary surgery at NIH – November 3, 1987.

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

My Cushing’s has been in remission for most of these 35 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.

A few years ago I went back on it (Omnitrope this time).  I am posting some of how that’s going here.

During nephrectomy, 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 several 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.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I didn’t look forward to telling my endo!  I have had a couple more injections.  I was approved for a new three-time gel injection over 3 weeks.

I also developed an allergy to blackberries last October and had to take Prednisone – and I had to tell my endo that, too!

Last year I had squamous cell carcinoma on my nose and had Mohs Surgery.

March 9 of this year, I finally had my left knee surgery.   I’ve posted about that here: https://maryomedical.com/2023/03/09/bees-knees-tkr-finally/  I imagine that next year, I’ll get my other knee done.

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.

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

Giving Thanks: 36 Years Post-Op

November 3, 2023

MaryO Adrenal Insufficiency, growth hormone, Growth Hormone Deficiency, MaryO, Pituitary, Pituitary Surgery, Success Stories, Treatments , , , , , , , , , , , , , 2 Comments

 

Today is the 36th 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 36 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while and I’m back on it..

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

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 year, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist didn’t want me to get a cortisone injection in my knee.  So, I got a whole new knee instead.

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.

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

It all started way back in 1983.

At first, I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.

Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for the 30 minutes.

A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal magazine which said: “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library and medical books I bought, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

I asked doctors for three years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. It’s too rare. You couldn’t have Cushing’s. I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

My husband was on the doctors’ sides. He was sure it was all in my mind (as opposed to all in my head!) and he told me to just think “happy thoughts” and it would all go away.

A Neurologist gave me Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

Later in 1986, I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987, I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker, like the rings of a tree. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, the Hematologist/Oncologist ran a twenty-four-hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s. Of course, he was sure that he did the diagnosis. No matter that I had been pursuing this with other doctors for 3 years.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

When the endo confirmed that I had Cushing’s in 1987 he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterward to prevent uncontrollable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterward, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years, NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

My story goes on and if you’re interested some is on this blog and some is here:

Forbes Magazine | MaryO’s bio | Cushing’s and Cancer Blog | Interview Archive 1/3/08 | Cushing’s Awareness Day Testimonial Archive |

Because of this experience in getting a Cushing’s diagnosis – and later, a prescription for growth hormone – I was concerned that there were probably other people not being diagnosed with Cushing’s. When I searched online for Cushing’s, all the sites that came up were for dogs and horses with Cushing’s. Not what I was looking for!

In July of 2000, I was talking with my dear friend Alice, who ran a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2023, we have over 73 thousand members. Some “rare disease”!