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

Posted on October 14, 2025 by MaryO

“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

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Double Synchronous Functional Pituitary Adenomas Causing Acromegaly and Subclinical Cushing Disease

Posted on July 1, 2025 by MaryO

Abstract

Double pituitary adenomas with growth hormone (GH) and adrenocorticotropic hormone (ACTH) secretion are very rare. They are responsible for acromegaly with hypercortisolism. Subclinical corticotropic adenomas are exceptional.
Herein, we report the case of a patient with double functional pituitary adenomas causing acromegaly and subclinical Cushing’s disease. A 45-year-old woman was referred to our Department for suspected acromegaly. Her past medical history included diabetes mellitus treated with oral antidiabetic drugs and hypertension.
On physical examination, she had a large prominent forehead, thickened lips, increased interdental spacing, prognathism, and enlarged hands and feet. No signs of hypercortisolism were found. Biological investigations showed an elevated insulin growth factor-1 (IGF-1) level at 555 ng/mL, a GH nadir after 75 g oral glucose tolerance test at 2 ng/mL, a morning cortisol level at 158 ng/mL, an ACTH level at 64 pg/mL, a thyroid stimulating hormone (TSH) level at 2.26 mIU/L, and a free thyroxine (FT4) level at 12.8 pmol/L. Cortisol level after low-dose dexamethasone suppression test was 86 ng/mL.
The diagnosis of acromegaly associated with Cushing’s disease was established. Pituitary magnetic resonance imaging showed a pituitary macroadenoma with no clear limits. The patient underwent transsphenoidal tumor resection. The pathological examination revealed two separate pituitary adenomas. The positivity to ACTH and GH was 100% and 80%, respectively.
This case emphasizes the necessity of an evaluation of all the pituitary axes in case of adenoma in order not to miss a double hormonal secretion or more even in the absence of suggestive clinical signs.

Filed under: Cushing's, pituitary, Rare Diseases | Tagged: , , , , , , , , | Leave a comment »

Day 15, Cushing’s Awareness Challenge

Posted on April 15, 2024 by MaryO

Today’s Cushing’s Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing’s. I think it is, either directly or indirectly.

I alluded to this a couple days ago when I said:

I finally started the Growth Hormone December 7, 2004.
Was the hassle and 3 year wait worth it?
Stay tuned for tomorrow, April 15, 2016 when all will be revealed.

So, as I said, I started Growth Hormone for my panhypopituitarism on December 7, 2004.  I took it for a while but never really felt any better, no more energy, no weight loss.  Sigh.

April 14 2006 I went back to the endo and found out that the arginine test that was done in 2004 was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I went off GH again for 2 weeks, then was retested. The “good news” was that the arginine test is only 90 minutes now instead of 3 hours.

Wow, what a nightmare my arginine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go right home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy he was having 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.

There were signs all over that no cellphones were allowed so I sat in the restroom (I had to be in there a lot, anyway!) and I left messages for several of my doctors on what I should do. It was Friday afternoon and most of them were gone 😦  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 anaesthetic 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 instantly became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. At first, they thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My new “instant doctor” felt that he wasn’t up to the challenge of my surgery, so he called in someone else.  My next new “instant doctor” came to see me in the ER in the middle of the night.  He patted my hand, like a loving grandfather might and said “At least you won’t have to do chemotherapy”.  And I felt so reassured.

It wasn’t until later, much after my surgery, that I found out that there was no chemo yet that worked for my cancer.  I was so thankful for the way he told me.  I would have really freaked out if he’d said that nothing they had was strong enough!

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believed he got it all.

He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the arginine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The arginine test showed that my IGF is still low but due to the kidney cancer I couldn’t take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

So… either Growth Hormone helped my cancer grow or testing for it revealed a cancer I might not have learned about until later.

My five years are up now.  When I was 10 years free of this cancer my kidney surgeon *thought* it would be ok to try the growth hormone again.  I was a little leery about this, especially where I didn’t notice that much improvement.

What to do?

BTW, I decided to…

Filed under: adrenal, Cancer, Cushing's, Diagnostic Testing, pituitary | Tagged: , , , , , , , , , , , , , , , , | 1 Comment »

Day 13, Cushing’s Awareness Challenge

Posted on April 13, 2024 by MaryO

UVA 2004
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos!

As early as 2001 (or before) my pituitary function was dropping.  My former endo tested annually but did nothing to help me with the symptoms.

In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.  Needless to say, I left his office in tears, again.

Fast forward 2 years to 2004.  I had tried for a while to get my records from this endo. He wouldn’t send them, even at doctors’ or my requests.

I wanted to go see Dr. Vance at UVa but I had no records so she wouldn’t see me until I could get them.

Finally, my husband went to the former endo’s office and threatened him with a court order. The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001 including weeks and weeks at NIH and pituitary surgery, that didn’t seem like enough records to me.

In April of 2004, many of us from the message boards went to the UVa Pituitary Days Convention. That’s where the picture above comes in.  Other pictures from that convention are here.

By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me later. In the email, she asked how I was doing. Usually I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests (ITT). From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 17 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I went back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He said that I would end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, in November, 2004, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we had to appeal on Monday. My local insurance person also worked on an appeal, but the whole thing was  just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving.

As it turned out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Was I going to be a ginuea pig again?

The new GH company assigned a rep for me, submitted info to pharmacy, and waited for insurance approval, again.

I finally started the Growth Hormone December 7, 2004.

Was the hassle and 3 year wait worth it?

Stay tuned for April 15, 2016 when all will be revealed.

Read

Read Dr. Barbara Craven’s Guest Chat, October 27, 2004

Thanks for reading 🙂

MaryO

Filed under: adrenal crisis, Cushing's, Meetings and Conferences, pituitary, symptoms, Treatments | Tagged: , , , , , , , , , , , , , , , , , , , | 3 Comments »

Acromegaly: Chronic disease root of young man’s abnormally gray hair and facial changes

Posted on May 10, 2021 by MaryO

A chronic, progressive disease was discovered to be the reason why a man in his 20s experienced a sudden increase of gray hair and facial changes, local doctors said.

The man recently went to Renji Hospital to find out why the changes had taken place.

Doctors suspected he suffered from acromegaly, a chronic disease characterized by enlargement of head bones, soft parts of the feet and hands and sometimes other parts of the body due to excessive secretion of growth hormones by the pituitary gland.

Doctors conducted an MRI and found a pituitary tumor, which caused the man’s acromegaly. To their surprise, doctors also found a cyst in his brain.

Doctors conducted one successful surgery to treat both problems simultaneously.

Dr Ma Jing, director of Renji Hospital’s endocrinology department, said acromegaly is an endocrine metabolism disease that has no symptoms in its early stages, and most people are not diagnosed with it until they are 40 or 50, commonly 4.5 to 9 years after originally contracting the disease — in some extreme cases, 20 years later.

In addition to affecting the hands, feet and face, the disease can afflict the cardiovascular system, causing problems like hypertension and poor heart function. Those with the disease also have a higher risk of diabetes, thyroid and intestinal tumors, Ma said.

“Since people with acromegaly usually have abnormal endocrine function, early screening and diagnosis is important,” she said.

From https://www.shine.cn/news/metro/2105078537/

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