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Jennifer P’s Daughter, Undiagnosed Bio

August 24, 2019

MaryO Growth Hormone Deficiency, Other Diagnosis, Pediatric, Undiagnosed , , Leave a comment

 

Mom to a beautiful 13 year old girl who has struggled with her weight for years.

After slowed growth doctor diagnosed her as growth hormone deficient and she has done injections for almost a year. She has grown some but still has truncal obesity and other symptoms that point to Cushing’s.

Her endo blows me off bc she doesn’t have the purple stretch marks but my fut tells me we are missing something.

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Sahana (Sahana), Adrenal Bio

November 14, 2018

MaryO Adrenal, Adrenal Surgery, Treatments , , , , , , , , , , , , , 1 Comment

 

My daughter had hair loss since age of 15
At 16 she had a hump at the back of her neck
Age 17 had anxiety, negative thoughts and memory loss.
Weight gain, acanthosis and menstrual irregularities.

I had shown her to many dermatologists for hair loss. At 16 had shown her to 2 endocrinologists
At 17 to psychiatry, gynaecologist and 2 more endocrinologists finally arriving at diagnosis after cortisol and ACTH tests followed by dexa suppression and CT abdomen.
She was operated laparoscopically and is now 7 mths postop.
She is off steroid supplementation and is improving steadily.

I WISH THERE WAS MORE AWARENESS ABOUT THIS DISEASE !!
My daughter has suffered a lot and I pray she recovers completely 🙏🏼

 

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Jennifer M’s Daughter, Undiagnosed Bio

July 31, 2016

MaryO Undiagnosed , , , , , Leave a comment

undiagnosed6

Hello
My daughter has recently been tested for cushings syndrome. She is nine years old.

when she was 5 years old she went completely blind and forgot everything. her OT thinks it might have been a mini stroke. The doctors could not find anything wrong with her. She always had a desteneded belly the doctors told me it was constipation. this year in Feburary she developed a buffalo hump. the doctors told me she had a flesh eating bacteria. I took her to the hospital they told me it was scoliosis.

After fighting with a doctor I was finally refered to Pittsburgh childrens Hospital. I was seen by an onocologist. He ran the cortisol test we are still waiting to hear the results.

When I was a child in 3rd grade I went from a size 7slim to a 16 plus in one year. I also have cognitive delays. we both suffer from migerains and other people in my family have the depression. my cousin had some rare bird disease and my mom had the diabetes high blood pressue and died of small cell carcinoma. If it wasn’t for the buffalo hump I would have never known that this condition existed.

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Laurie (Boo), Undiagnosed Daughter

April 15, 2016

MaryO Undiagnosed , , , , , , , , , , , , , Leave a comment

undiagnosed2

 

18 yr old daughter. Diagnosed with alopecia areata as a toddler. Continued through childhood until eventually lost most hair on body. Some re growth at puberty, but minimal. (Checked for PCOS age 15 ultra sound looked fine but showed mild fatty liver, she had started to put on excess weight)

Age 15. Late menses, then irratic, sometimes every 4 or 5 months, then heavy or light. Height growth stopped around 16. (Few inches shorter than all female relatives. ) Weight again, headaches, back pains, hump, chest pain episodes (3 different times), (ruled out as stress in the ER even though all episodes happened while she was having fun) light headed upon awaking in am, then felt nausea, sometimes vomits until bile. (many times led to testing of gall bladder some disfunction), (cyclical) constant throat and tonsil infections led to tonsil removal, still many throat and urinary infections, excellent student but deals with extreme fatigue, occasional brain fog, anxiety at times, moodiness, dry eye, thirsty a lot, some course black hair growth occasionally, acne, red face, moon face, problems in heat, a few pigment discoloration in spots, some purple stretch marks, weight gain heavier in midsection, repeatedly tries to eat healthy and can’t drop wieght unless she is ill and not eating at all.

Seems to be cavity prone even though she is diligent and obsessive about clean teeth. Wears corrective lenses, has vision blurriness at times, can’t wear contacts due to dry eye and discomfort.

Finally ended up at endo after many other doctors. Have been waiting over 3 weeks for results of dex suppression text. Still no news from doctor, even though I call. Frustrated, have known things were wrong outside of the norm, separate of the auto immune disease Alopecia Areata. Yet no one can figure out a connection or what.

My Daughter hasn’t felt good in 4 years. I’m sick and tired of no one trying to find cause. If it is Cushing’s, why the lack of urgency to help us figure out. After chest pains episodes etc, I’m scared of damage to her body. Not to mention possible infertility issues down the road. I’m tired of being treated as if its nothing All I want is my kid to be the happy go lucky, full of energy, brave, intelligent, confident (even though she has been bald most of her life), like she was her freshman year of high school.

Been a gradual slope downward since.

Help

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Alice’s Daughter, Undiagnosed Bio

March 18, 2016

MaryO Undiagnosed , , , , , , , , Leave a comment

undiagnosed2

 

Reading the bios and other information online about Cushings has me very concerned for my 15 year old daughter.

At 5 she developed strong body odor and started rapidly gaining weight. She also grew extremely fast. She was the biggest kid in her kindergarten. We have a very tall family so I did not think the height was abnormal but I did ask the doctor about her body odor and told the doctor I was concerned she was starting puberty at 5. The doctor told me everything was fine. I noticed my daughter had tons of pubic hair at age 7 and I took her to the doctor. The doctor did think this abnormal, she was also already developing breasts.

They did a lot of tests and told me her bone age was 3 years advanced. I cannot remember what they said her diagnosis was but basically early puberty that they said would stunt her growth. She is presently 15 and 5′ 9″.

My daughter’s weight remained too high but relatively steady until about two years ago. She has gained 75lbs in the last two years, her hair is falling out, she is having to shave her face because the sides of her face are completely covered in hair, she constantly complains of aching joints and now in the last 9 months she has developed a huge fatty lump on her back just below her neck.

I have mentioned some of these symptoms to the doctor in the past but the doctor blames the symptoms on my daughter’s weight. Her hair loss the doctor blames on stress. My daughter is not stressed. She has a very laid back personality. I am taking my daughter back to the doctor on Monday and am going to insist she check my daughter’s cortisol levels.

Does anyone know of a good doctor in Colorado? What tests should I request from her doctor? Does this sound like Cushings to anyone else? Thanks for any help.

Alice

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Traci’s Daughter, Undiagnosed Bio

February 18, 2015

MaryO Undiagnosed , , , , , , , Leave a comment

My 11 year old is currently at NIH, undergoing 2 weeks of diagnostic tests.

Her main symptoms have been stunted growth and weight gain. She doesn’t have some of the other classic symptoms.

She undergoes the IPSS tomorrow, so hopefully we’ll know more then.

 

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MacKenna (skymac12), Undiagnosed Bio

June 1, 2014

MaryO Undiagnosed , , 2 Comments

MacKenna is my daughter.  I am in desperate need of assistance regarding her weight.

She is 6 years old and weighs about 95 pounds.  At four, she was normal to underweight.

First clue – she gained 10 pounds in three months.  Of course doctor’s wanted a food log …. however, as her parent, I knew something was wrong.

So much to say, I NEED to help my baby and am hoping someone on this board can point me to a good pedi endo (I am currently on my second).  I have pictures to show the progression of her changes.  Her growth pattern is abnormal as she does not gain height while she gains weight and vice versa.

I believe it is cyclical cushings.  And if it isn’t, I still need help as this is going to kill her – her little frame cannot hold much more.

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Trish D (trishtd), Undiagnosed Bio

December 31, 2013

MaryO PCOS, Undiagnosed , , , , , , , , , 5 Comments

I am the mother of a young woman who has been ill for over fifteen years.

As a very young woman – at her 21st birthday and engagement party, she was a size ten and in very good health.  She was a healthy child who grew up in a home where sound nutrition was practised. This is an endeavour she has carried into her own married life, leading a very healthy lifestyle and preferring organic food.

She has never smoked, drunk or used any illicit substance.  She ought be very healthy.

Over the past few years she has been increasingly ill.  Extreme fatigue, massive weight gain, in the upper body and around what used to be her waist.  She has the classic moon face, with no distinguishable jawline or cheekbones. She has a great deal of fat around her neck and a defined ‘buffalo hump’.

She has had a variety of ‘tests’ done by conventional pracitioners, with a diagnosis of Poly Ovarian Cystic Syndrome.  I believe she has Cushings and have encouraged her to seek alternative help.  She has ‘given up’ on doctors as she feels as if she has been treated with disdain.   She has a remarkably positive attitude and a husband who is very loving and supportive.

She does not have the ‘stretch marks’ of Cushings, but my understanding is that that is not a prerequisite.  I have become increasingly concerned about her each time I visit, which is at times, with a few months between seeing her and cried all the way home after the last one, such is the increasing change I see in her.

I am concerned the outcome will be fatal and have finally encouraged her to see another doctor here.   I want to take her to a doctor who is holistic in their attitude, something that seems hard to find.

She is now 40 and nearing the end of her potential child bearing time. I am sad for her that a misdiagnosis and frustration at achieving no result, will not only potentially be fatal, but that the goal of motherhood for her, can not be achieved.

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Cat (ceebee), Undiagnosed Bio

November 13, 2013

MaryO Undiagnosed , , , 2 Comments

Hi, I’m Cat and I have a 17 year old daughter who may have Cushing’s. I am aggressively seeking help for my girl.

We are on doctor #3 and have hit another wall w/ this one too. My daughter has several physical manifestations of Cushing’s, as well as two episodes of hypercortisolism confirmed on labwork. However, my daughter’s obvious symptoms are being quickly brushed off.

I need major support in how to navigate this hellish ride and I am seeking guidance in finding a Cushing’s specialist who will either rule in or rule out a diagnosis of Cushing’s in my girl.

thank you

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Deidre (deidre), Undiagnosed bio

November 7, 2013

MaryO Hashimoto's, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , , , , 1 Comment

I am a mother of a 20-year-old daughter with suspected Cushing’s.  She was diagnosed with Hashimoto’s disease (with goiter) almost 4 years ago.  Synthroid no help.  Armour keeps TSH levels in range, but symptoms of fatigue, increased weight, etc, etc continue.

Noticed hump at certer top back, at base of her neck, some years ago, but had no idea about Cushing’s.  Four months ago noticed that it was getting quite larger.  Started research of this development, which of course, brought me to Cushing’s.  So many other symptoms line-up with Cushing, including larger midsection/skinner legs, moon face, purple stretch marks on stomach, rapid, unexplained weight gain, extreme mood swings, extreme anxiety, etc.  Great-grandmother, same body shape, died of diabetes.  Grandmother, same body shape, recently diagnosed with diabetes.  Father, same body shape.

When first diagnosed with Hashimoto’s disease, first endocronologist experience was so very, very disappointing.  Prescribed synthroid, which did not work, then decided we should do a thyroidectomy.  No signs of cancer.  Doctor’s husband just happened to preform thyroidectomys.  We did not have this procedure.

Found a general practicioner doctor who prescribed armour, which seemed to help somewhat, at least better than synthroid.  With development of the hump and worry about Cushings, we have found a new endocronologist.  In the last few weeks he has ordered the following tests:

1st test:  Overnight Dexamethasone.  Results:  Cortisol (normal scale of 4.0 to 22 mcg/dl); her levels were at 5.4 mcg.  So she was only slightly abnormal.  Could not rule out Cushings.

2nd test:  24-hour Urine-Free Cortisol Test.  Cortisol (normal scale of 4.0 to 50); her levels were at 42.1 mcg.  Creatinine were slightly elevated at 2.60 g/24h (normal scale of .63 to 2.50).

Based on the results of the follow-up 24-hour urine test, endo states she does not have Cushing’s.  Reading online, I found information that if urine creatinine levels are abnormal, which hers were, this invalidates the 24-hour urine test.  The test should be repeated, right?

What do I do?  Trust this endo?  Or do I ask him to order more tests?  If so, what test?  Should I look for another endo (running out of these in western NC)?

She just has all these physical and emotional markers that hint at something more than Hashimotos.  I certainly do not want her to has Cushings, but, if there is a chance she has this disease, then I want to know now, so we can address it as soon as possible.

Any help on interpreting these tests from people who understand this disease better than me would be so appreciated.

Deidre

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