Millennial Woman Hasn’t Slept the Night in 19 Months—Viewers Shocked Why

“I haven’t had a proper night’s sleep in 19 months,” Aleksa Diaz told Newsweek. “Even if I’m physically exhausted, I can’t fall asleep. I wake up more than ten times a night—fully conscious. I only get about two to four hours of broken sleep.”

The 30-year-old from Austin, Texas, has shared her experience on TikTok (@aleksaheals) earning 94,000 views. During the video, she points out that she has not “crashed” once and wonders how her body is continuing to function.

Diaz says that her insomnia began in January 2024 and is linked to a benign tumor in her pituitary gland—a small, hormone-producing gland at the base of the brain—known as a pituitary adenoma.

According to the American Brain Tumor Association (ABTA), about 13,770 pituitary tumors are diagnosed each year in the U.S., accounting for roughly 17 percent of all primary tumors in the central nervous system (CNS).

Symptoms of Pituitary Tumors

Pituitary tumors and cysts typically arise from two main causes: pressure on the gland and surrounding structures, or overproduction of hormones. The severity and type of symptoms depend on the tumor’s size and the specific hormones involved.

The ABTA notes that when the tumor presses on the pituitary gland or nearby structures, it can lead to:

  • Headaches
  • Visual loss
  • Hair loss
  • Diminished libido
  • Weight fluctuations
  • Skin changes
  • Fatigue or low energy

Symptoms Caused by Excess Hormone Production

Approximately 70 percent of pituitary tumors are “secreting,” meaning they release excess hormones. These include:

  • Growth hormone: Overproduction can cause localized excess growth (‘acromegaly’) in adults and gigantism in children.
  • Prolactin: Leads to menstrual changes and abnormal milk production.
  • Sex hormones: Can cause menstrual irregularities and sexual dysfunction.
  • Thyroid hormones: Can trigger hyperthyroidism, with symptoms such as weight loss, heart rhythm changes, anxiety, bowel changes, fatigue, thinning skin and sleep problems.
  • Adrenal hormones: Excess can lead to Cushing’s disease, characterized by a moon-shaped face, excess body hair, easy bruising, menstrual irregularities and high blood pressure.

A Long Road to Diagnosis

Diaz told Newsweek that she has experienced many of these symptoms, beginning with severe hair loss at just 18.

“I started to feel off and suddenly began losing hair,” she recalled. “I was shedding over 300 hairs a day—just brushing my hair or running my fingers through it.”

Initially, doctors diagnosed her with polycystic ovary syndrome (PCOS). “I didn’t have any other symptoms, but I just thought it must be what they said,” Diaz explained.

By the time she turned 22, the hair loss was severe and unrelenting.

“It wasn’t stopping,” she said. “I went to a dermatologist and had a brain MRI—then they found a 5mm tumor on my pituitary gland.”

Around the same time, Diaz began gaining weight that wouldn’t budge despite dieting and regular exercise.

“I developed depression and always had a puffy, inflamed face,” she said. “The hair loss was causing me a lot of self-esteem issues.”

Over the years, Diaz’s symptoms multiplied—dry skin, dry eyes, low libido, anxiety, twitching legs and hip pain after exercise. She estimates she has consulted around 40 doctors and spent 500–600 hours researching her condition.

In 2018, she was formally diagnosed with a pituitary adenoma and prescribed metformin to lower hormone levels. “They told me to wait and see,” she said. When her insomnia worsened, Diaz suspected the tumor was causing multiple hormone-related conditions, but doctors did not confirm it.

By January 2024, she noticed new symptoms: vaginal dryness, hip pain and worsening sleep. Tests revealed her estrogen was abnormally low for her age.

“I take medication for that now and progesterone too,” she said. After years of trying everything—dermatologists, supplements and expensive hair treatments—she finally saw some hair regrowth.

Still, Diaz’s diagnosis of hypopituitarism means her pituitary gland underproduces several critical hormones.

The ABTA notes that doctors often recommend monitoring small tumors, since they typically grow slowly and cause no symptoms. But Diaz, whose tumor is 5 mm, disagrees.

She said: “Doctors believe that because the tumor is under 1 cm it can’t possibly be causing enough symptoms to risk doing surgery. The main risk is developing another hormone deficiency post-op.

“However, surgeons who do this surgery say it’s routine and not super risky, so it’s confusing as a patient.

“Cases like mine of mild hypopituitarism are often ignored, leading to a slow progression of hormone deficiencies—the very thing that is a risk of surgery.”

When she was 29, Diaz started taking hormone replacement therapy (HRT)—a treatment that replaces female hormones, mainly estrogen and progesterone, which fall to low levels during menopause.

She told Newsweek: “Doctors don’t understand why I’m basically in menopause. We don’t know the risks of long-term HRT. The medications make me feel better, but it’s not safe as a long-term solution.”

Living with the Emotional Toll

Alongside her physical symptoms, Diaz has developed severe depression and feels “literally running on empty.”

“I feel like I have hope for the future only when I manage a decent night’s sleep,” she said. “I don’t want to see anyone or socialize. I haven’t gone out in six months. It’s affected my job—I was almost fired in March.

“I’ve become very forgetful, I miss meetings and tasks and I sometimes can’t remember what I did yesterday. It’s like I have severe ADHD, but it’s not.”

A Call for Change in Treatment

Now financially and emotionally exhausted, Diaz fears what will happen if she continues to be denied further testing or surgical treatment.

“I’m worried something will happen to me,” she said. “I’ve reached my limit financially. My physical and mental health are exhausted.”

Diaz believes her struggle is far from unique. “From the time you have symptoms to when you get a diagnosis it can take 10 years,” she said.

“A lot of women have expressed they don’t feel like they are being taken seriously—and that has been my experience. Being young is a disadvantage. I’m on six medications now to manage my hormones. I’ve lost weight and my hair is growing back, so doctors think I must be fine. But they don’t see what’s really going on.”

Do you have a tip on a health story that Newsweek should be covering? Do you have a question about pituitary tumors? Let us know via health@newsweek.com.

https://www.newsweek.com/millennial-woman-sleep-insomnia-pituitary-tumor-10821739

Research Study for Patients Diagnosed with Cushing’s Disease and Their Caregivers

We’re looking for caregivers to loved ones diagnosed with Cushing’s Disease or patients diagnosed with Cushing’s Disease to participate in a research study.

✅ Who: Patients and caregivers of loved ones

⏳ What: 30-minute Online Survey

💰 Compensation: $60.00

Sign up here: https://rarepatientvoice.com/CushingsHelp/

 

Cushing’s Syndrome Study for Patients and Caregivers

We have an opportunity for you to take part in a Cushing’s Syndrome Study for patients and caregivers. Our project number for this study is SJO_11379.

Project Details:

  • Web-assisted telephone interview (you must be by a computer with high-speed internet access while on the phone during the time of the interview) – WEBCAM REQUIRED
  • Interview is 60-minutes long, plus optional 30-40 minute homework assignment
  • up to 195 Dollar Reward (120 Dollar Reward for Interview, 75 Dollar Reward for completion of optional homework assignment)

Things to Note:

  • Provide detailed and thoughtful responses. Rushed responses may be rejected by the client.
  • Using AI may be flagged, and your reward forfeited.
  • Using a VPN may cause you to disqualify from the study
  • Study is open to patients and caregivers
  • Please do not share study links
  • Please use a laptop/computer ONLY. No smartphones or tablets – Preliminary questions are mobile friendly!
  • Save this email to reference if you have any questions about the study!
  • If you have any problems, email jennifer.harscheid@rarepatientvoice.com and reference the project number.  

If you are interested in this study, please click the link below to answer a few questions to see if you qualify.

Study link: Start Here

OR if the study hyperlink is not clickable above, please copy/paste this URL below.
https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/surveystart.php?surveyID=b9bk3vluq338&panelMemberID=trfnbc7mvduh1gseff1h&invite=email

Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.

Birthday of the Message Boards

September 30, 2000 - Birth of the Message Boards

September 30, 2000 – Birth of the Message Boards

Today  is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year in July)

As of today, we have 73,357 members who have made well over 380,324 posts.

Find the message boards here: http://cushings.invisionzone.com/

Interview with Doc Karen, Pituitary Patient and Cushing’s Advocate

Karen’s Story

Life was good! In fact, life was great! I was married to the love of my life. We had a beautiful little girl. My husband and I had both earned our graduate degrees. I earned my Doctorate in Clinical Psychology and was growing my clinical practice. I loved my work!

In October, 2006, my life was turned upside down when I gained 30 pounds in 30 days! I knew this was not normal at all. I sought answers but my doctor kept insisting that I wasn’t eating the right foods, that I wasn’t exercising hard enough, and finally that it was genetic. However, I was always a thin person, I ate pretty healthy foods, and I was pretty active. Red flags became even greater when my physician put me on prescription weight loss drugs and I STILL gained another 30 pounds. I knew my body and I knew something was wrong but I had no one to validate what was going on.

In January, 2010, to my surprise, I learned that I was miraculously pregnant with our second daughter. I was so sick during that pregnancy and,  again, my doctors couldn’t figure out why. My OBGYN was very supportive, yet so concerned. Her solution was to put me on bed rest. I became so ill that she told me that “my only job was to sit still and wait to have a baby”. I did give birth to a healthy baby girl four weeks early. Little did I know, then, how much of a miracle she was.

During the latter part of my pregnancy, while flipping through channels on television, I came across a Cushing’s episode on the health TV show, “Mystery Diagnosis”.

I knew right away that this diagnosis fit everything I had been experiencing: years of weird and unexplained symptoms, gaining 150 pounds for no reason, an onset of diabetes, high blood pressure, and an overall sense of doom.

You see, my friends and family witnessed me go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushing’s, as I tried for many years to get answers from professionals. As I continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; I continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching that Cushing’s episode of Mystery Diagnosis, I found my answer! Ultimately, I sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. I had brain surgery in Seattle on November 16th, 2011. I want to tell you how I found the people who helped save my life…

On June 9, 2011, I went to my first MAGIC conference. I had never heard of them but someone on one of the online support groups told me about it.  At that time, I was working but was very, very sick. We suspected at that time that I had been sick for years! My local endocrinologist was far from a Cushing’s expert. After watching the Cushing’s episode of Mystery Diagnosis, I told the same endocrinologist who had misdiagnosed me for years that I had found my answer. He swore that there was “literally no possible way that I had Cushing’s Disease!” He stated that my “hump wasn’t big enough”, “my stretch marks were not purple enough” and that “Cushing’s patients do not have children!” I told him that I was NOT leaving his office until he started testing me. He finally caved in. To his surprise, I was getting abnormal labs back.

At that time, there was evidence of a pit tumor but it wasn’t showing up on an MRI. So, I had my IPSS scheduled. An IPSS stands for Inferior Petrosal Sinus Sampling. It is done because 60 % of Cushing’s based pituitary tumors are so small that they do not show up on an MRI. Non Cushing’s experts do not know this so they often blow patients off, even after the labs show a high level of ACTH in the brain through blood work. An overproduction of the hormone ACTH from the pituitary communicates to the adrenal glands to overproduce cortisol. Well, the IPSS procedure is where they put catheters up through your groin through your body up into your head to draw samples to basically see which side of your pituitary the extra hormone is coming from, thus indicating where the tumor is. U of C is the only place in IL that does it.

So, back to the MAGIC convention; my husband and I went to this conference looking for answers. We were so confused and scared!  Everyone, and I mean everyone, welcomed us with opened arms like we were family! There were brilliant presenters there, including an endocrinologist named Dr. William Ludlam. At that time, he was the director at the Seattle Pituitary Center in Seattle, WA. He is a true Cushing’s expert. Since then, he left in January, 2012 to have a significant impact toward the contribution of research of those impacted by Cushing’s Syndrome. His position was taken over by another brilliant endocrinologist, Dr. Frances Broyles.

I was scheduled to get an IPSS at U of C on June 28th, 2011 to locate the tumor. Two days after the IPSS, I began having spontaneous blackouts and ended up in the hospital for 6 days. The docs out here had no clue what was happening and I was having between 4-7 blackouts a day! My life was in danger and they were not helping me! We don’t know why, but the IPSS triggered something! But, no one wanted to be accountable so they told me the passing out, which I was not doing before, was all in my head being triggered by psychological issues. They did run many tests. But, they were all the wrong tests. I say all the time; it’s like going into Subway and ordering a turkey sandwich and giving them money and getting a tuna sandwich. You would be mad! What if they told you, “We gave you a sandwich!” Even if they were to give you a dozen sandwiches; if it wasn’t turkey, it wouldn’t be the right one. This is how I feel about these tests that they ran and said were all “normal”. The doctors kept telling us that they ran all of these tests so they could cover themselves. Yet, they were not looking at the right things, even though, I (the patient) kept telling them that this was an endocrine issue and had something to do with my tumor! Well, guess how good God is?!!!!

You see, Dr. Ludlam had given me his business card at the conference, which took place two weeks prior to the IPSS. I put it away for a while. But, something kept telling me to pull the card out and contact him. I am crying just thinking about it, Lord!

So, prior to my IPSS, I wrote Dr. Ludlam an e mail asking him some questions. At that time, he told me to send him ALL of my records including labs. I sent him 80 pages of records that day.  He called me back stating that he concurred with all of the evidence that I definitely have Cushing’s Disease from a pituitary source. He asked me what I planned to do and I told him that I was having the IPSS procedure done in a few days at the University of Chicago. He told me once I got my results to contact him.

Fast forward, I ended up in the hospital with these blackouts after my IPSS. The doctors, including MY local endocrinologist told me there was no medical evidence for my blackouts. In fact, he told the entire treatment team that he even doubted if I even had a tumor! However, this is the same man who referred me for the IPSS in the first place! I was literally dying and no one was helping me! We reached out to Dr. Ludlam in Seattle and told him of the situation. He told me he knew exactly what was going on. For some reason, there was a change in my brain tumor activity that happened after my IPSS. No one, to this day, has been able to answer the question as to whether the IPSS caused the change in tumor activity. The tumor, for some reason, began shutting itself on and off. When it would shut off, my cortisol would drop and would put me in a state of adrenal insufficiency, causing these blackouts!

Dr. Ludlam said as soon as we were discharged, we needed to fly out to Seattle so that he could help me! The hospital discharged me in worse condition then when I came in. I had a blackout an hour after discharge! But get this…The DAY the hospital sent me home saying that I did not have a pit tumor, my IPSS results were waiting for me! EVIDENCE OF TUMOR ON THE LEFT SIDE OF MY PITUITARY GLAND!!!

Two days later, Craig and I were on a plane to Seattle. I had never in my life been to Seattle, nor did I ever think I would go. We saw the man that God used to save my life, Dr. William Ludlam, the same man who we had met at the MAGIC conference for the first time one month prior! He put me on a combo of medications that would pull me out of crisis. Within one month, my blackouts had almost completely stopped! Unfortunately, we knew this was a temporary fix! He was treating me to carry me over to surgery. You see, his neurosurgeon, Dr. Marc Mayberg was just as amazing. He is one of the top neurosurgeons in the US! Statistically, he has one of the highest success rates!

The problem was that our insurance refused to pay for surgery with an expert outside of IL, stating that I could have surgery anywhere in IL! Most people don’t know that pituitary surgeries are very complicated and need the expertise of a “high volume center” which is where they do at least 50 of these surgeries per year. Dr. Mayberg has performed over 5,000 of these surgeries!  By this time, we had learned that we need to fight for the best care! It was what would give me the best chance at life! We thought I would have to wait until January when our insurance would change, to see if I could get the surgery I so desperately needed! I was holding on by a thread!

We began appealing our insurance. At the time the MAGIC foundation had an insurance specialist who was allowed to help us fight our insurance. Her name is Melissa Callahan and she took it upon herself to fight for us as our patient advocate. It was a long and hard battle! But…we finally WON!!!! On November 16th, 2011, Dr. Marc Mayberg found that hidden tumor on the left side of my pituitary gland! He removed the tumor along with 50% of my pituitary gland.

Recovery was a difficult process. They say that it takes about one full year to recover after pituitary surgery for Cushing’s. I was grateful to be in remission, nonetheless. However, about one year after my brain surgery, the Cushing’s symptoms returned. After seven more months of testing that confirmed a recurrence of the Cushing’s, I was cleared for a more aggressive surgery. This time, I had both of my adrenal glands removed as a last resort. By then, we had learned that I had hyperplasia, which is an explosion of tumor cells in my pituitary. It only takes one active cell to cause Cushing’s. Therefore, I could have potentially had several more brain surgeries and the disease would have kept coming back over and over.

As a last resort, my adrenal glands were removed so that no matter how much these cells try to cause my adrenals to produce excessive amounts of cortisol; the glands are not there to receive the message. As a result, I am Adrenally Insufficient for life, which means that my body cannot produce the life sustaining hormone, cortisol, at all. I had my Bilateral Adrenalectomy by world renowned BLA surgeon, Dr. Manfred Chiang, in Wisconsin on August 21st, 2013. I traded Cushing’s Disease for Addison’s Disease, one of the hardest decisions I have ever had to make in my life. However, I knew that I would die with Cushing’s. Recovery from my last surgery was difficult and involved weaning down to a maintenance dose of steroid to replace my cortisol. Now, on a maintenance dose; I still have to take extra cortisol during times of physical or emotional stress to prevent my body from going into shock.

I promised a long time ago that I would pay it forward…give back because so much has been given to me. This is why I have committed my life to supporting the Cushing’s community. I post videos on YouTube as a way of increasing awareness. My channel can be found at http://www.YouTube.com/drnkarenthames

Additionally, I am working on a Cushing’s documentary. Please like us on Facebook at http://www.facebook.com/Hug.A.Cushie

Thank you for taking the time to read my story!

Karen has made 2 videos about her experiences with Cushing’s:

and

Doc Karen will be our guest in an interview on BlogTalk Radio  Friday December 2 at 11:00 AM eastern.  The Call-In number for questions or comments is (323) 642-1665 .

The archived interview will be available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 90 other past interviews to listen to!