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MaryO

Hypopituitarism: The girl who couldn't wake up

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'Mystery Diagnosis' recounts Brandon family's long ordeal

Billy Watkinse

 

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Charlie Julian raced up the stairs of the family's Brandon home and into his sister's bedroom, where he found her asleep and unresponsive.

 

He yelled for her to wake up and gently, but firmly, slapped her face.

 

"That's when I would just burst out laughing," says Jennifer Julian Jenkins, 25, recalling a day last May when she and her brother reenacted a real-life scene for The Discovery Channel's Mystery Diagnosis series, which will air Dec. 15. "We must've tried it a dozen times and every time he would slap me, I couldn't keep from laughing.

 

"They finally said, 'Let's just skip the slapping part.' "

 

It wasn't a laughing matter four years earlier. After being rushed to the hospital, Jenkins' body temperature was a frigid 94.3, her blood pressure a dangerously low 76/61.

 

Numerous tests were conducted. The best guess doctors could offer: Jenkins was suffering from a severe case of the flu.

 

For five years, beginning in 1999 at age 16, Jenkins complained of fatigue, nausea, dizziness, memory loss and severe headaches. She frequently fainted. All she wanted to do was sleep.

 

And she went back in time. Instead of going out with her friends from Brandon High School, Jenkins was content to stay home and play with Barbie dolls.

 

In addition to the flu, Jenkins was diagnosed with anemia, gastroenteritis and a viral infection. A psychiatrist said there was nothing medically wrong with Jenkins, she was depressed and lazy.

 

"And I began to believe them," Jenkins says. "To me, I had become this awful, worthless person.

 

"At one point, my parents talked about putting me in a mental institution because no matter how hard they tried, nobody could find anything wrong. And the thought of being institutionalized really didn't bother me. All I could think about was, 'At least there, I could sleep without anyone disturbing me.' "

 

Finally in March 2004, after visiting more than 20 specialists and nearly losing her life, two Jackson physicians - Albert Steele and Robert Evans - correctly pinpointed Jenkins' problem. Jenkins was suffering from hypopituitarism. In plain terms, her pituitary gland - located at the base of the brain - had stopped supplying her body with sufficient amounts of hormones.

 

"For five years, we watched our daughter become someone we barely recognized," says her mother, Marilyn Julian. "And I was treated by most doctors as some micro-managing mother who needed to get out of the way and quit bringing her to see them."

 

On June 7, 1999, Jenkins and her mother were driving home from Columbia after visiting Jenkins' grandmother, who was battling cancer.

 

Jenkins was driving her mother's new Honda Accord and traveling the speed limit, 65 miles per hour, along U.S. 49 when a car pulled from the shoulder of the median into Jenkins' path.

 

Upon impact, both cars began to spin. The driver's side of the Honda was struck twice by the other car. Jenkins was knocked unconscious. Her mother suffered two broken ribs. The other driver, a teenage boy in his aunt's car, was not injured.

 

Jenkins opened her eyes shortly after the ambulance arrived. "I remember hearing my mother screaming for me to wake up, and I had a lot of pain in my neck," she says.

 

They were treated and released from Simpson General Hospital in Mendenhall. Jenkins and her mother were sore for several weeks but appeared to recover with no complications.

 

Four months later, Jenkins had her first fainting spell. Jenkins' pediatrician ordered tests of her brain and heart. "When the results came back, the doctor didn't seem too concerned," she says.

 

Her frustrating medical journey had begun.

 

A month later, the day before Thanksgiving, Jenkins appeared to be having a stroke. Her speech was slurred. Her mouth drooped on one side. She was admitted to the University of Mississippi Medical Center in Jackson and diagnosed with complex migraines.

 

"I'd have at least one migraine every month," Jenkins says. "They would put me out for a day or two."

 

"If Jennifer got a cold, it turned into a major ordeal," Marilyn says. "If she got a stomach bug, she would have to be hospitalized for it. I work at Brandon High School (as choral director and a health teacher). I'm around teenagers all the time. Stomach bugs usually don't put them in the hospital."

 

Jenkins says her senior year "is a blur ... I see the pictures of my graduation, but I really don't remember it."

 

Her grades slipped. When she took the ACT again, hoping to improve on the 21 she made as a sophomore, she scored an 18.

 

She flunked out of Belhaven College her freshman year "because I couldn't stay awake long enough to go to class.

 

"And my parents didn't know what to think. So we had a big pow-wow. You know, 'You've got to do better. You're sleeping your life away.' But in their defense, they had tried everything and I couldn't even keep a job."

 

She was so fatigued, Jenkins went into one of the dressing rooms at a department store where she worked and went to sleep. When co-workers came banging on the door, she tried to disguise her voice, hoping they would go away and let her rest.

 

"Jennifer told me recently that she would tell us anything we wanted to hear back then so we would leave her alone and let her sleep," Marilyn says. "I think about it now, what it must have been like for her."

 

It was Feb. 16, 2004, when Charlie found his sister near death in her bedroom.

 

"I had an Algebra test that day (at Hinds Community College) and my mom kept calling me, making sure I was awake," Jenkins recalls. "After the third time, I just quit answering."

 

Marilyn sent Charlie over to check on her.

 

"I think we all wonder what would have happened if Charlie hadn't been home studying for the Bar exam," Jenkins says.

 

On a whim, Jenkins' dad - Charles Julian - made an appointment for her to see his internal medicine specialist, Albert Steele.

 

"Dr. Steele listened to what had been going on, and then he started taking my vitals," she says. "When he took my blood pressure, it basically didn't register. He said, 'I don't see how you're even standing right now.' "

 

Tests revealed her cortisol level was critically low. Steele referred Jenkins to Robert Evans, an endocrinologist, who discovered Jenkins' thyroid level was low.

 

"He said, 'I think I know what it is - hypopituitarism - and I'm going to put you on some medicine (Cortef, a steroid, and Levoxyl, which increases one's thyroid level),' " Jenkins recalls. "He told me if that's what it was, I would feel better within 24 to 48 hours."

 

The next day, Jenkins came running down the stairs, into her parents bedroom and jumped onto the bed.

 

"That was one of the biggest miracles of our lives," Marilyn says. "She said, 'I realize I'm not a lazy bum, that I've actually been sick this whole time!' My husband and I just sat there in shock."

 

Jenkins is now married to a lawyer, Jacob, and works as a cardiac nurse at St. Dominic Hospital in Jackson.

 

And she recently tossed the doctors another curve: Jenkins found out three weeks ago she is pregnant.

 

"I was totally flabbergasted when I heard that," Evans says. "I just didn't think there was any way, because of the (hormonal) problems she had been through, that Jennifer could conceive a child."

 

So why did Jenkins and her family have to go through 20-something doctors and thousands of dollars before finding two physicians who diagnosed the problem almost immediately?

 

"Her symptoms were pretty dramatic, but Jennifer was a teenage girl who looked otherwise healthy," says Evans, who has been practicing for 24 years. "It's pretty easy for a doctor to say, 'She's 17. Weak. Dizzy. Give her a little time until she grows up, and it'll go away.'

 

"And hypopituitarism is not something you see a lot in adolescents. It's usually found in older adults. I give Dr. Steele a lot of credit for testing her cortisol level. And I'm just happy I was able to discover the thyroid problem and prescribe the correct medicine."

 

Credit also goes to one more physician: Lewis Blevins, a pituitary specialist at Vanderbilt Medical Center in Nashville.

 

"Dr. Blevins was the first one to connect the car wreck with the pituitary problem, even though my husband and I always suspected it," Marilyn says.

 

"The pituitary gland is like a cherry on a stalk," Jenkins says. "Dr. Blevins believes the impact during the accident tore the stalk and prevented the pituitary gland from doing its job."

 

Jenkins takes a daily dose of Dexamethosone and Levoxyl to stimulate her adrenal glands and increase her thyroid levels.

 

Two tablets every 24 hours and life is great again.

 

"I hope some of the doctors I saw read this," Jennifer says. "I hope they slow down, listen to their patients a little more and take the time to figure out what is wrong instead of just chalking everything up to age or depression."

 

From http://www.clarionledger.com/article/20081.../812070332/1023

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MaryO,

 

Thanks for posting this great article! It's good to hear that those of us with hypopituitarism aren't crazy after all!

 

Thanks,

 

Steve :(

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Yup that is me before steroid and now that it has been taken away. Ever since getting back from Ceders and the "cold turkey" steroid withdawl all I do is sleep. I have slept almost every hour of every day for the past 9 days. I sleep through everything. I wake up for an odd hour in the middle of the night or in the daytime. My DH and I were just talking about my sleep and how scary it is.

 

XO Lisa

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That describes exactly how I felt. It got to the point where I couldn't wake up to go to work. I'm so thankful my boss and others around me realized it was a medical problem and that I was able to take a leave of absence vs. being fired!!!!

 

I sure wish I had perked up as much as she did though. I'm still dragging on the energy. :(

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I can't wait to see this show!!!

Shar McGraw's story on Mystery Diagnosis was the breakthrough for me. I've been dx'd with hypopituitarism---but I'm also testing for cyclical Cushings.

 

Thanks for posting this for us!

Mystery Diagnosis and this website, and all of you---have been my life-savers!!!

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Barb, on the Discovery Health Channel, they have the episode listed for these days and times:

 

Dec 15, 10:00 pm

Dec 16, 2:00 am

Dec 20, 5:00 pm

 

I don't know if it is the same or all time zones, so everyone will want to check their local listings.

 

Hugs,

Robin

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Oh wow... I feel like this when I'm low. The best way I could describe how I feel on these days is near coma. Getting out of bed is a chore, keeping my eyes open is a chore... Sleep comes easy, and I feel like a need a lot of it...

 

Crazy how some of us can go from one extreme to another, between highs and lows.

 

So sad that it took so long for people to stop calling her lazy, and realize maybe she wasn't a zombee by choice!

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It's back again!

 

Please see the Discovery Health Channel listings for exact times in your area.

 

Tuesday Jan 19, 10:00 pm

 

Wednesday Jan 20, 2:00 am

 

Saturday Jan 24, 5:00 pm

 

'Mystery Diagnosis' recounts Brandon family's long ordeal

Billy Watkins

 

Jennifer Julian Jenkins began experiencing mysterious symptoms following a 1999 auto accident. Five years later she was diagnosed with hypopituitarism and is now on medication to control her condition.

 

(Joe Ellis/The Clarion-Ledger)

 

 

File downloads

 

Charlie Julian raced up the stairs of the family's Brandon home and into his sister's bedroom, where he found her asleep and unresponsive.

 

He yelled for her to wake up and gently, but firmly, slapped her face.

 

"That's when I would just burst out laughing," says Jennifer Julian Jenkins, 25, recalling a day last May when she and her brother reenacted a real-life scene for The Discovery Channel's Mystery Diagnosis series, which will air Dec. 15. "We must've tried it a dozen times and every time he would slap me, I couldn't keep from laughing.

 

"They finally said, 'Let's just skip the slapping part.' "

 

It wasn't a laughing matter four years earlier. After being rushed to the hospital, Jenkins' body temperature was a frigid 94.3, her blood pressure a dangerously low 76/61.

 

Numerous tests were conducted. The best guess doctors could offer: Jenkins was suffering from a severe case of the flu.

 

For five years, beginning in 1999 at age 16, Jenkins complained of fatigue, nausea, dizziness, memory loss and severe headaches. She frequently fainted. All she wanted to do was sleep.

 

And she went back in time. Instead of going out with her friends from Brandon High School, Jenkins was content to stay home and play with Barbie dolls.

 

In addition to the flu, Jenkins was diagnosed with anemia, gastroenteritis and a viral infection. A psychiatrist said there was nothing medically wrong with Jenkins, she was depressed and lazy.

 

"And I began to believe them," Jenkins says. "To me, I had become this awful, worthless person.

 

"At one point, my parents talked about putting me in a mental institution because no matter how hard they tried, nobody could find anything wrong. And the thought of being institutionalized really didn't bother me. All I could think about was, 'At least there, I could sleep without anyone disturbing me.' "

 

Finally in March 2004, after visiting more than 20 specialists and nearly losing her life, two Jackson physicians - Albert Steele and Robert Evans - correctly pinpointed Jenkins' problem. Jenkins was suffering from hypopituitarism. In plain terms, her pituitary gland - located at the base of the brain - had stopped supplying her body with sufficient amounts of hormones.

 

"For five years, we watched our daughter become someone we barely recognized," says her mother, Marilyn Julian. "And I was treated by most doctors as some micro-managing mother who needed to get out of the way and quit bringing her to see them."

 

On June 7, 1999, Jenkins and her mother were driving home from Columbia after visiting Jenkins' grandmother, who was battling cancer.

 

Jenkins was driving her mother's new Honda Accord and traveling the speed limit, 65 miles per hour, along U.S. 49 when a car pulled from the shoulder of the median into Jenkins' path.

 

Upon impact, both cars began to spin. The driver's side of the Honda was struck twice by the other car. Jenkins was knocked unconscious. Her mother suffered two broken ribs. The other driver, a teenage boy in his aunt's car, was not injured.

 

Jenkins opened her eyes shortly after the ambulance arrived. "I remember hearing my mother screaming for me to wake up, and I had a lot of pain in my neck," she says.

 

They were treated and released from Simpson General Hospital in Mendenhall. Jenkins and her mother were sore for several weeks but appeared to recover with no complications.

 

Four months later, Jenkins had her first fainting spell. Jenkins' pediatrician ordered tests of her brain and heart. "When the results came back, the doctor didn't seem too concerned," she says.

 

Her frustrating medical journey had begun.

 

A month later, the day before Thanksgiving, Jenkins appeared to be having a stroke. Her speech was slurred. Her mouth drooped on one side. She was admitted to the University of Mississippi Medical Center in Jackson and diagnosed with complex migraines.

 

"I'd have at least one migraine every month," Jenkins says. "They would put me out for a day or two."

 

"If Jennifer got a cold, it turned into a major ordeal," Marilyn says. "If she got a stomach bug, she would have to be hospitalized for it. I work at Brandon High School (as choral director and a health teacher). I'm around teenagers all the time. Stomach bugs usually don't put them in the hospital."

 

Jenkins says her senior year "is a blur ... I see the pictures of my graduation, but I really don't remember it."

 

Her grades slipped. When she took the ACT again, hoping to improve on the 21 she made as a sophomore, she scored an 18.

 

She flunked out of Belhaven College her freshman year "because I couldn't stay awake long enough to go to class.

 

"And my parents didn't know what to think. So we had a big pow-wow. You know, 'You've got to do better. You're sleeping your life away.' But in their defense, they had tried everything and I couldn't even keep a job."

 

She was so fatigued, Jenkins went into one of the dressing rooms at a department store where she worked and went to sleep. When co-workers came banging on the door, she tried to disguise her voice, hoping they would go away and let her rest.

 

"Jennifer told me recently that she would tell us anything we wanted to hear back then so we would leave her alone and let her sleep," Marilyn says. "I think about it now, what it must have been like for her."

 

It was Feb. 16, 2004, when Charlie found his sister near death in her bedroom.

 

"I had an Algebra test that day (at Hinds Community College) and my mom kept calling me, making sure I was awake," Jenkins recalls. "After the third time, I just quit answering."

 

Marilyn sent Charlie over to check on her.

 

"I think we all wonder what would have happened if Charlie hadn't been home studying for the Bar exam," Jenkins says.

 

On a whim, Jenkins' dad - Charles Julian - made an appointment for her to see his internal medicine specialist, Albert Steele.

 

"Dr. Steele listened to what had been going on, and then he started taking my vitals," she says. "When he took my blood pressure, it basically didn't register. He said, 'I don't see how you're even standing right now.' "

 

Tests revealed her cortisol level was critically low. Steele referred Jenkins to Robert Evans, an endocrinologist, who discovered Jenkins' thyroid level was low.

 

"He said, 'I think I know what it is - hypopituitarism - and I'm going to put you on some medicine (Cortef, a steroid, and Levoxyl, which increases one's thyroid level),' " Jenkins recalls. "He told me if that's what it was, I would feel better within 24 to 48 hours."

 

The next day, Jenkins came running down the stairs, into her parents bedroom and jumped onto the bed.

 

"That was one of the biggest miracles of our lives," Marilyn says. "She said, 'I realize I'm not a lazy bum, that I've actually been sick this whole time!' My husband and I just sat there in shock."

 

Jenkins is now married to a lawyer, Jacob, and works as a cardiac nurse at St. Dominic Hospital in Jackson.

 

And she recently tossed the doctors another curve: Jenkins found out three weeks ago she is pregnant.

 

"I was totally flabbergasted when I heard that," Evans says. "I just didn't think there was any way, because of the (hormonal) problems she had been through, that Jennifer could conceive a child."

 

So why did Jenkins and her family have to go through 20-something doctors and thousands of dollars before finding two physicians who diagnosed the problem almost immediately?

 

"Her symptoms were pretty dramatic, but Jennifer was a teenage girl who looked otherwise healthy," says Evans, who has been practicing for 24 years. "It's pretty easy for a doctor to say, 'She's 17. Weak. Dizzy. Give her a little time until she grows up, and it'll go away.'

 

"And hypopituitarism is not something you see a lot in adolescents. It's usually found in older adults. I give Dr. Steele a lot of credit for testing her cortisol level. And I'm just happy I was able to discover the thyroid problem and prescribe the correct medicine."

 

Credit also goes to one more physician: Lewis Blevins, a pituitary specialist at Vanderbilt Medical Center in Nashville.

 

"Dr. Blevins was the first one to connect the car wreck with the pituitary problem, even though my husband and I always suspected it," Marilyn says.

 

"The pituitary gland is like a cherry on a stalk," Jenkins says. "Dr. Blevins believes the impact during the accident tore the stalk and prevented the pituitary gland from doing its job."

 

Jenkins takes a daily dose of Dexamethosone and Levoxyl to stimulate her adrenal glands and increase her thyroid levels.

 

Two tablets every 24 hours and life is great again.

 

"I hope some of the doctors I saw read this," Jennifer says. "I hope they slow down, listen to their patients a little more and take the time to figure out what is wrong instead of just chalking everything up to age or depression."

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Thank you for sharing this Mary. It reminds me of the 13 years of going from dod to doc, while raising my three girls, trying to find an answer to all the same symptoms she reported, often ending up in the ER, only to have my heart tested and told I was fine.but maybe I should see a psychiatrist.

My hypopit was caused by excessive blood loss during deliveries of my middle and youngest daughters,(known as Sheehans) which caused the blood supply to the pituitary gland to be "dried up", right at a time when it needs extra blood..therefore, causing it to shrink and slowly dysfunction thereafter.

I want to report to all on here...I have been greatly helped by meds for hypopit..it took 18 months to

"get it right."..but I am able to function at a much higher level than before. I am able to walk daily and stay up all day, without a nap on most days....and accoplish all cooking, cleaning and housework and management of three teens schedules..plus time to be a good wife and to take care of myself.

I take more replacements than her though..probably because I am also compensating for hormone changes due to menopause.

I take bioidentical estrogen and testosterone...ironsorbs....cortef, florinef and synthroid.

 

Just a note: was recently diagnosed with a vestibular disorder that I am going to physical therapy for and it is being corrected...

The vestibular disorder is probably due to a root canal that left an infection in it for 6 years, when the tooth was finally pulled..but the infection moved to the ear and caused a weakness in one of my ears. This also took 14 years to get diagnosed correctly and it also can cause memory loss and eye disturbances and fatigue because the brain is working so hard to compensate for the weakness in the ear, to keep balance, that your brain loses memory space and gets fatigued.

My therapy actually involves exercises that cause more dizziness...but only to a "5" on a scale of 1-10..and although the ear weakness does not go away..by doing the exercises on a regular basis, it retrains the brain to get the right signals and keep my balance as I move more. I am getting my life back!

Next step will be to take care of the hemmorhoids!

One thing at a time , but I am getting better!

Thanks be to GOD!

 

Thinking about you all on here..and praying for your better days!

Love, LoriJane

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I'm 2 for 2 with Mystery Diagnosis.

First the show on Cushings.

Next up--- the show on Hypopituitarism.

I'm waiting for the show on Growth Hormone Deficiency next.

PS: I'm not counting the show where a woman spent something like 3 years, numerous doctors and thousands and thousands of dollars only to find out in the end that her thyroid was low.

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