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My 15 year old daughter and 3 mm pituitary microad

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Replied by carolk on topic My 15 year old daughter and 3 mm pituitary microad

I am not a medical professional. However, Cushing's is a complex disorder and can be very difficult to diagnose. That is why it is so important to see a pituitary specialist. Was the endo that told your daughter it was non-functioning a pituitary specialist? Another opinion never hurts. 

Seeing a specialist affiliated with a pituitary center is ideal because they have a multidisciplinary team of doctors including neurosurgeons that all work together to come up with a diagnosis and treatment plan especially for each patient. It is so important to have a neurosurgeon with pituitary expertise if surgery is necessary to help preserve the pituitary gland. Ask questions about how many successful pituitary surgeries he/she has performed. Many pituitary cases are not considered textbook and often mimic other disorders. See below for PNA'S list of specialists and hospitals:

https://pituitary.org/medical-resources/physicians

https://pituitary.org/medical-resources/hospitals
Also, have your daughter keep a diary of her symptoms, including the date and time and bring the diary with her to the appts so the doctor understands her quality of life is being affected. She needs to advocate for herself and if she can't, she needs you to.
Stay strong and don't give up until she gets answers.

3 weeks 1 day ago #10766

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Replied by PLaura4404 on topic My 15 year old daughter and 3 mm pituitary microad

Hello.  My 19 year daughter has recently been diagnosed with a 4 mm pituitary microadenoma.  She also has had stretch marks on her back and breasts since around age 10-12.  I blew it off thinking it was her growing so tall so quickly.  Towards the end of her senior year she would come home so exhausted and sleep for 1-2 hours.  Has never been a nap taker.  She started having problems with her blood sugar dropping.  The wonderful physician assistant drew labs and we were trying to get a diagnosis of Cushings.  Long story short - the second endocrinologist tells us the adenoma is nonfunctioning.  My daughter has also been experiencing tachycardia and difficulty with taking a breath.  Says her chest hurts.  She is now wearing a ecg holter monitor for a month.  POTS has also been discussed.  We are trying to figure out if the POTS and adenoma are related.  The cardiologist is willing to refer us to a neurosurgeon.  This has taken a toll on my daughter.  She is exhausted all the time.  Has held out on college and getting a job due to feeling crappy all the time.  Hope we all get answers soon.
3 weeks 3 days ago #10765

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Replied by carolk on topic My 15 year old daughter and 3 mm pituitary microad

Hi Ian,
It is very possible that the microadenoma is to blame for this person's symptoms. The pituitary gland hormones can affect almost every cell in they body. Microadenoma's can hypersecrete hormones that ravage the body and do untold damage.  These disorders are rare and complex. The average primary care doctor has probably never diagnosed  a pituitary patient. This person needs to be seen by an endocrinologist with pituitary experience. Not all endo's are the same, most treat more common disorders like diabetes. The pituitary endo will know what tests to run to get a proper diagnosis. At a pituitary center would be ideal because they have a multidisciplinary team of experts who will consult to come up with the best treatment plan for the patient. If they need surgery to remove the adenoma, they need an experienced pituitary neurosurgeon. See below for PNA's known list of pituitary physicians:
https://pituitary.org/medical-resources/physicians
See below for a list of hospitals that have pituitary centers/programs:
https://pituitary.org/medical-resources/hospitals
Have the patient start keeping a journal of symptoms with date/time they are happening and how they are feeling. Have them write down questions for the doctor and bring all of this to the endo appt. Sharing what really going on with the patient and how their quality of life is being affected will help the doctor decide on the course of treatment
1 month 3 days ago #10756

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Replied by Ian Brooks on topic My 15 year old daughter and 3 mm pituitary microad

Hi, did you find out what was wrong with your daughter.  I'm interested to know because I have someone else with identical symptoms and also a 3mm pituitary  microadema.

Look forward to hearing from you.

Regards

Ian
1 month 3 days ago #10753

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  • MamaPenn
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My 15 year old daughter and 3 mm pituitary microad was created by MamaPenn

My 15 yr DD has been having some issuse since she was 11 years old with major forgetfulness to the point I thought I was following a 2 yr old around. She has struggled with school since 6th grade - esp Math. Prior to that was advance in every subject In 6 grade she had a small child like body and then in 7th grade she bloomed into woman's body - like overnight. She had gotten tall for age and her lower back was covered in stretch marks as well as breast area.

In 7th grade one of her teachers recommend she get her eye sight tested and and we found her eye sight was not good so she starting wearing glasses.

She started her period at the beginning of 7th grade - right at the age of 14.
I could never find our salt shaker and I found her eating salt in her bed room. She had to have salt on everthing.
And she started having major headaches where she could not move without the room spinning and nauses. She would get dizzy upon standing up.

So I took her to our ped doctor who referred us to a speciality doctor at our local women's and children hosp. He diagnosed her with MILD POTS. Postural orthostatic tachycardia syndrome. B/c she was getting dizzy and her BP was going up when she stood up. He told me she was self medicating with salt. He also told us she was miragaines - I also mentioned to him on at several visits the her memory was getting worse.

This was the end of 7th grade. All he her do for the POTS was drink gatorade in the morning and at lunch. He wrote a note our school nurse so they would let her have gatorade at lunch. We went to see him every 4 months to followup on her headaches - he put her on amitriptyline to help manage the headaches. We also decided to try her birth control pills to help regulate her periods, BUT she could never remember to take them, again I had to follow her around like a two yr old. We gave up the birth control pills. I once again I asked about her memory issues in one visit and he told it was normal for a 14 yr old girl. During one visit he noticed her thryoid seemed enlarged. He ordered- blood work and an utlra sound of her thryoid. Blood work was a little off and the ultra sound was normal. So he told us we would watch it.
Also he ordered a sleep study,

At the end of 8th grade she fell down flight of stairs at school - 20 steps and hurt her shoulder. She has started to fall a lot going up and down stairs - and tripping over her own feet.

She has been have muscle pain in different area of body.

2016 - So now we are at the end of freshmen year and on 3/3/2016 we found out she has 3 mm pituitary microadenoma. How did we get here????
Well at the end of Dec 2015 I got her report call and CA/English grade - was a D- , she has always been ADVANCE in English - even in 7th she was preforming in CA/English on a college level. So I got concerned. I found she had not be turning in work, she was coming to class late, coming to her classes unprepared (no books or notebook, pencils) . At home we notice her she was not eating like her normal self - she not longer cared for her favorite foods. - she had 3 food she craved or she did not eat.???? We noticed how disorganized she getting. She was losing everything - and I mean everything.

She started slurring her words, she started complaining about her tongue being too big. She started smacking her lips randomly. She is reversing her words in speech - such as "leave rest for the some" when she meant to say - "leave some for the rest" -- She calling items by the wrong name, such as the toaster / mircowave. She is writing the wrong words on test, when she knows the answers. AT Christmas - could not remember family members names. She is forgetting classmate names. 2 weeks ago, she could not remember how to turn on the dryer.

Feb 2016
I took her back to Ped Doctor, she did a neuro examine it checked out... she decided to ADD elevuation - the teachers at school were not seeing what were seeing at home.
Our ped doctor ordered an MRI - bc I took my daugther to the BRAIN BALANCE CENTER for testing and after testing they told me I should see our doctor before we sign up with treatment with, just in case we have missed something medically. Our ped doctor did not like what she was saw from the report from the BRAIN BALNCE CENTER.

My daughter has started having sport induced headaches during PE. She cannot take a hot shower or sit in our hot tube without the room spinning. She has started having petimal seizures. We seen our speciality doctor - he requested the neruo doc to see her - they got her right in. She has seen the neuro doctor they ordered - SLEEP DEPRIVED EEG for next week b/c she does believe she is having seizures. She is scheduled in 2 weeks - for a 4 hours of testing neuro pyschologist. She is scheduled for another sleep study b/c she does have mild sleep apena and insomia. And now since the MRI came back with the 3 mm pituitary microadenoma - they have now sit her up with appt to see Ped Endocrionolgist. I have no idea if everything going on is connected to the pituitary gland... but I will not stop until they us find what is happening to her.

Other things - my daughter has always be extremly cold and she cannot get warm. Hot showers/ Hot weather - gives her headaches and makes the room spin.
3 years 7 months ago #10233

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