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Molly (Iloveparrots), Undiagnosed Bio

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I’m new to this board and am currently waiting to have tests done for Cushings. I live in WNY, have an African Grey Parrot (who I love dearly), am in my early 40’s, and have other diseases.

I’m seeing an Endocrinologist that I’m not that thrilled with and found one in a nearby city that specializes in Cushings, so I think I will go to her for a second opinion and possibly stay with her.

I’m very scared and have little to no support network.

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Patricia, Adrenal Bio

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My adrenal incidentaloma was discovered after an abdominal CT in 2011.  My doctor told me that it was insignificant, and no follow up was needed.

Late 2012 I began having symptoms which led me to believe that something hormonal was going on.  I was having extreme anxiety, headaches, insomnia, new onset hypertension, hair loss, blurred vision, memory problems, dizziness, and extremely heavy menses.  I went to the gynecologist because I thought it might be premenopausal symptoms.  The doctor started me on birth control pills to regulate the periods, which was the only symptom that improved.

My general practitioner sent me to a cardiologist for my blood pressure which was spiking as high as 194/110.  The cardiologist immediately suspected a pheo, and referred me back to the GP with a recommendation for a referral to endocrinology.  The initial round of labs were all within normal limits with the exception of plasma cortisol due to the estrogen pills.  The endocrinologist told me to follow up in one year.

A lot of people started telling me it I was just stressed out, and depressed.  I don’t buy it for a minute.  It feels like something chemically is wrong. It’s hard to explain….I just don’t feel right.  Yes, I have stressful things going on, but not anything that should make me feel like this.  Especially when things are fine, and I am going to meet a friend for coffee why on earth would I almost freak out on the way there? I started feeling better for a couple of months, then the symptoms came back.

I have had 3 near panic attacks in the last 6 months, social withdrawal, rapid abdominal weight gain, hospitalized with 24 hours of amnesia (transient global amnesia…which left lesions on my hippocampus), headaches, hypertension, amenorrhea for 8 months, increased facial hair.

My first lab test was the high dose dexamethasone which I did not supress.  Last week I did the 24 hour urine…a whopping 3650 liters!!  I will get the results on Thursday.  My endo said he will need to do an adrenal vein sampling as part of the diagnosis.

Has anyone else had to do this?  I am in Germany, so maybe it is just different protocol here, but I really don’t want to have to do it.

Thanks for any feedback!

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Trish D (trishtd), Undiagnosed Bio

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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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Caryl, Undiagnosed Bio

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Hello!

I’m 24 years old and I think I’m starting to have the initial symptoms of Cushing’s, albeit not that florid.

It starting last year in late 2017 when I am 100% certain that my face is getting bigger, and that I found it harder to lose weight despite adequate exercise and caloric limitation.

Fat started to accumulate generally. I also experienced bowel problems for which doctors diagnosed as constipation.

I have normal blood pressure and normal 75g OGTT results.

The other thing that has come up last month is a bruise about 2cm initially and is now 4cm in diameter and simply does. Not. Heal. 🙁

My OB-GYN told me I have PCOS, and would like to start me on birth control pills.

I just want to know if it’s still possible that I’m in the early stages of Cushing’s. 🙁
Thank you

My symptoms:

– Acne (non-resolving)
– Bowel problems/ constipation
– Non-healing wound
– Occasional palpitations

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H. Lane (Sunshine), Undiagnosed Bio

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I have a giant buffalo hump on the back of the neck with vertical blue/purple lines below it.

I also have lipomas not symetrical across my upper back.  Then there are two symetrical lumps near each arm pit.

Two lab results come back saying I have a normal cortisol level.

I am diabetic, type 2, with high blood pressure, and only slightly elevated cholesterol levels.

I am wondering if I may have Cushings as well as Madelung’s disease.  I am very confused.

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Brian (Brian), Adrenal Bio

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In 2011, I realized I had Cushing’s Syndrome. I was a 30 year old male with several complications: swollen feet, swollen legs, stomach looked 9 months pregnant, hair fell out, memory loss, couldn’t sleep, couldn’t eat, diabetes, mood swings, depression, urination every hour during the night, bright pink stretch marks, etc.

After changing my doctors several times for misdiagnosis, I was finally tested for Cushing’s Disease/Syndrome. I contacted the National Institute of Health and doctors advised me to come in immediately. I survived 2 months living at NIH, while doctors ran several tests to determine if I had Cushing’s Disease or Cushing’s Syndrome. I had Cushing’s Syndrome and my tumor was found in my right adrenal gland.

After sucessful surgery, I did not have the energy to get out of the bed for almost a month. I was taking almost 10 pills per day including cortisol, high blood pressure medication, potassium, etc. I lost 40 pounds after surgery going from 208 pounds to 168 pounds and after 6 months, I was taken off all medication. I beat Cushing’s Syndrome and Diabetes!

Now, I am 32 years old. I am in great shape and finally got my life back. I do not have any complications. The only sign of Cushing’s Syndrome are the stretch marks and a scar from removing the tumor from my adrenal gland.

I just wanted to meet other people going through a bad disease and help out if possible. I am here if anyone has questions or just want to talk.

~ Brian

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Brian R, MENS Bio

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I became sick July 2014, August my family physician sent me for blood tests etc. by September, I saw thyroid surgeon, had CT and MRI of head throat area. I went to local hospital for the tests. The tests were inconclusive. Bad equipment, I later found out.

Surgeon said we should monitor condition and wait or we could do exploratory surgery. I CHANGED DOCTOR.

Next I went to Nuero for tests, nuropothy had already set in my legs and I was falling all the time. Rapid weight increase, tired and cramping all the time, irritable and miserable. She sent me to endocrinologist and more tests, definitely showed para thyroid adhesions, had surgery in October 2015, didn’t do both sides and would have to have surgery again in December.

Returned to work and immediately tore my shoulder muscles and was finished from work, (Workman’s comp) fought having a MRI, I did it anyhow, went to surgeon and he wouldn’t operate because of my health issues.

In December they removed the growth on other side of para and a lump from thyroid. Four days later I became wheel chair bound.

Now we scheduled the pituitary surgery for February. Wednesday was the surgery and I could get up from bed the next day and walk. (I thoight it was a miracle) Discharged Friday, went for blood test Saturday and tried to get some rest.

By Wednesday I returned to the emergency room with 103 temp and sleeping all the time. They put me in ICU and I spent the next 10 days there.

Upon release we treated the body shutdown with cortisol steroids and continually adjusted my blood pressure meds. Three months later I started therapy to learn how to walk again. I would fall if I turned my head, left or right. Balance and equilibrium was really bad.

I finally returned to play golf in October, exactly 2 years from my first surgery. Weak, but I was able to drive, walk, (gingerly) and socialize.

It is a terrible disease and in July this year I felt it was back and blood tests confirmed my fears. I won’t go into my current conditions.

We all know how this saga plays out.

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In Memory of Judy Kennedy – December 15, 2019

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Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.

 

 

From 2008: Siblings Deal With Rare Cushing’s Diagnoses

By KALEY LYON

klyon@dailynews.net

COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school on a regular basis.

He was fatigued, unable to sleep at night and gaining weight rapidly. He also was unable to focus on his school work and began experiencing memory loss.

After several doctor’s appointments, Justin was diagnosed with Cushing’s disease, a rare disorder caused by excessive cortisol levels resulting from a tumor on the pituitary gland.

At the time of Justin’s diagnosis, his younger sister, Jessica, also was showing symptoms of the endocrine disorder. Her diagnosis came at the same time.

“I think they both have had symptoms since they were little,” said their mother, Judy Kennedy.

Other symptoms include a round facial shape, flushed cheeks, excessive hair growth, skin discoloration and depression, Judy Kennedy said.

Weight fluctuation is uncontrollable. Weight is gained at a high rate, despite diet, exercise and other efforts, Jessica Kennedy said.

“The weight has a mind of its own,” she said.

The diagnosis, following many doctor’s appointments and tests, came last November. Today, Justin, 19, keeps busy with a job at McDonald’s, and Jessica, 15, is a freshman in high school taking online classes.

One of the most bothersome symptoms of the disease is the toll it takes on the sleeping schedule. Her children often are unable to sleep until early morning, Judy Kennedy said.

“When there was a chance for her to do online high school, it was such a relief,” she said. “We don’t have to worry about what time she starts her school work.”

Appetite fluctuation is another side effect. The two go through phases where they have healthy appetites, then hardly eat at all, she said.

That’s because the disease puts their bodies through various cycles, which can last for less than a day or for months at a time, Judy Kennedy said.

It’s predicted that about 15 people in a million are diagnosed with the disorder, which can make it difficult to find support and get answers, she said.

The family, however, discovered an online support group and has enjoyed the opportunity to communicate with other families in similar situations.

“I honestly do not know where our family would be if I wouldn’t have found that support group,” Judy Kennedy said. “Even though it’s still awful, it’s better to know that other people have the same symptoms.

“There are people on the streets who have this and have no idea,” she said. “And their doctors don’t either.”

Both teenagers also are preparing for surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.

“I’m looking forward to that day,” she said.

This Topic on the Message Boards


JESS AND JUDY ARE MEMBERS OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jess and Judy answered questions in an online Voice Chat January 17, 2008. Archives are available.

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Helena (hummerbird), Steroid-Induced Bio

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Hi! My name is Helena (hummerbird). I am going to be 60 next week, Nov 16. I have come full circle with this.

I knew I had adrenal problems 12 years ago when I got stuck in the ‘fight or flight reflex’. I paid to have saliva tests done and it showed that I was dumping cortisol into my system early evening with my lowest point being 6am in the morning. I showed my allopathic doctors the tests but none would put any stock into saliva testing and just blew me off (this was 2002).

Some of my first signs were extreme insomnia yet when I did sleep I would still feel extremely fatigued, flushing of the face, neck, chest, and back, weekly migraines and daily headaches which started after I was 45, unexplained weight gain, crazy buzzy internal tremor adrenaline smacking (I could actually taste it!) jitters that would not go away, hypersensory (especially to light and sounds), feeling painfully sunburned even though I had not been out in the sun, pain in my legs going way beyond restless leg syndrome, totally fearful of everything, developing a hump between my shoulders and a host of other symptoms.

I was first diagnosed with fibromyalgia 03, then SLE Lupus 09 (positive ANA but no markers).

We moved to Colorado in 2012 and then back to Oregon 2014 and when I saw my rheumatologist again after 2 1/2 years (Oct 2014), he said it looks like you have Cushings? So at the moment I am suspected to have Cushings. I have been reading up on it and I am totally textbook (including the fact that I could literally step into the profile of the picture of the woman with Cushings).

Not sure if this is drug induced or if the prednisone finally brought out the demon that’s been tormenting me. My rheumie wants me to slowly wean off the prednisone. My dosage was 5mgs per day unless I was flaring (dealing with horrible muscular pain and internal tremors) then I was to do a step down starting at 30mgs back to 5mgs. I probably do a step down every other month.

My internist in Colorado wanted me to get off my Percocet 10/325mgs 4 times a day and try to deal with the pain. For the first time in my life I used MJ edibles to get off the Percocet with only a week of hard withdrawals. I was on the MJ edibles for 3 weeks until I realized I was allergic to it! I now take 2 Tramadol 50mgs 3 times a day to control pain. On the negative side this is not working because I have too much breakthrough pain but on the positive side I have a clearer head (I’m able to focus and read again!).

Over the years my days have gone from one ‘down’ day a week to a whole month of down days. I have lost my quality of life and pretty much my social skills. My venturing now is from my bed to the bathroom, kitchen, and possibly my recliner if I’m not feeling too dizzy.

I have three saints in my life, my husband and my two girlfriends who take care of me. I know that God has a plan for my life and I have faith in knowing that I’m going to feel well again some day. It has been a long and expensive road to travel to get to this point. I am not looking to have Cushings but it is a diagnosis that finally fits completely. I’m looking forward to meeting the support group.

Love you all and thanks for taking the time to read my post.

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Lauren, Undiagnosed Bio

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Hello. my name is Lauren. I am currently being tested for Cushing’s and am scared.

I have hypothyroidism/ Hashimoto’ s auto immune disease. Also my sugar is pre-diabetic.

I am 53 years old.  I don’t have a lot of the symptoms. I had gone into my endo and told him how rotten I feel. So he started with some testing. My ACTH number was 278 and my cortisol was 19.
This was around the middle of November.

However, in August i herniated a disc. I have been on oral steroids  for 5 days in August, a epidural steroid shot in my back in August, had back surgery end of September and put on a steroids for 5 days and had a steroid shot in my knee in  October. Also on a lot of pain killers and meds. I am off all meds for the last 4 weeks, off pain killers since October.

Also, I have had a very stressful and sorrowful last 10 years. I buried my 22 year old son 2.5 years ago.

I am hoping this is causing the reading.
I am glad I found this site. Thank you for reading this. I pray we all get well.

Thank you,
Lauren

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