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Britt (Britt), Undiagnosed Bio

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Hi there, my name is Britt. I am 20. I am going in for testing with the UCSF clinic in one month!

I am scared and excited because I have had Cushing’s symptoms for 4 years now and NEED to find out what is wrong with me. I actually found this webpage looking for answers AND I had an idea after reading an article about doing a survey on Cushing’s and Blood Type. It’s self-reported of course but I’d appreciate it if anyone would take it, whether or not you’ve been diagnosed!

Thanks and wish me luck! :)
https://www.surveymonkey.com/s/2CND967

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Don S (Don S), Undiagnosed Bio

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My name is Don.  I am 35and I am a career firefighter with 14 years on the job.

10 years ago I was injured badly at a fire and almost immediately noticed a change.  My skin began peeling off and I began gaining weight.

I knew about cortisol and its effect on the body because my mother passed away from Cushings at 46 after years of taking steroids for respiratory problems.  My doctors dismissed my issues as stress following the trauma.  My accident happened in March and by July, I had gained  80lbs.  I was constantly fatigued and developed acne all over my body.

A year or so later, I began having stomach issues.  Nausea and Reflux were with me everyday.   I continued to have high serum cortisol throughout the past 10 years but each time, it suppressed to just below the 1.8 threshold with dexamethasone so my doctors just dismissed it as stress.

In 2012, the dizziness and blurry vision began.  My spine is weak and my joints hurt constantly.  My legs are so skinny and weak, they shake when I stand and my heart races from any exertion.  I managed to continue working until a year ago when I accepted that I was putting myself and others at risk.

For the past year I have been paying guys to work for me in order to keep my job and insurance.  I worked hard for this career and promotions and I will not give it up without a diagnosis and confirmation that I can no longer do the job.

I have a new Endo now and she ordered a Urinary Cortisol.  It came back 4X higher than the upper limit.  She is convinced I have Cushings and it isnt just stress.  I have the following symptoms.  Weight gain of over 100lbs, Long purple stretch marks on my flank, side, and groin, Blurry vision, tachycardia, weak limbs, tremors, anxiety, puffy face, dizziness, stomach issues.

I am hoping after 10years of suffering, I may finally have my answer and that I can begin getting my life back.  I have a wife and 3 year old that really count on me and all I have been doing is letting them down.  Our lives are on hold because we do not know what the future will bring.

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Raveh I, Adrenal Bio

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Hello, my name is Inbar & I’m from Israel.

First of all I want to apologize my poor English, It’s only what I have learned through high school. Second I’m thrilled & exited finding other people who are facing the Cushing syndrome difficulties, fears & symptoms.

In my small country I wasn’t able to find any other forum I could share with.

Since the Cushing disease is more common, there is an association for those who have it. After speaking to one of there representatives I was disappointed to find out that the physical, mental, emotional and psychological difficulties are not the same & unfortunately they could not help me in any way.

I had a 5 cm tumor on my left adrenal which was removed 8 mounts ago.

I have carried this illness for at least 5 years facing all of the symptoms.

Since January I’m seeing a psychiatrist & taking all kinds psychiatric pills.

Yesterday I started seeing also a psychologist & came out very disappointed, since my problem is chemistry, psychological treatment won’t help.

I would be thankful for any self experience from any one.  I’m very close to having a breakdown.

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Dawn M (Lind8588), Steroid Induced Bio

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I have suffered from severe asthma and environmental allergies since I was a young child.  They used steroids as a way to help me breathe and stop hives.

As I got older, things just got worse.  More steroids, more allergy medications, etc.

Two years ago I started losing energy, lacking the urge to eat, having daily headaches, gaining weight even with exercise and sleeping a lot.  I thought it was stress as I was finishing my doctoral degree.  My regular doctor tried everything.

Finally, she sent me to Mayo in Minnesota and they diagnosed me with exogenous Cushing’s.  I had the buffalo hump, striae and moon face.  They did not give me any medications but told me to stop taking steroids.  Also, they found that my Vitamin D was a 9 so they loaded my Vitamin D.  I slowly started to feel better for the first six months.  I now seem to be going back downhill.  I am exhausted all the time.  I have no idea where to turn.  I am starting here and also looking for a local endocrinologist, otherwise I may return to Mayo.

 

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Andrea (AndreaM), Pituitary Bio

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I suffered from Cushings when I was 9 years old. I had pituitary surgery, bilateral adrenalectomy (back in 1988 when it was not laparoscopic), then 2 more pituitary surgeries as my tumor grew and regrew too close to the optic nerve. My last pituitary surgery was followed by Gamma Knife Radiation. That was when I was 19. Thankfully, since then, my ACTH levels have been normal, so there is no evidence of regrowth of pituitary tumor. I just turned 36.

The good news is that despite needing repeated pituitary surgery, I recovered well from the Cushings once my adrenals were removed and I was on daily replacement steroids. I have gone on to have a fairly normal life, including 4 children with no help needed in conceiving. I guess the doctors consider this basically a miracle considering my irregular cycles and all the pituitary surgery. I did end up with diabetes insipidus from the last pituitary surgery, which is probably the most uncomfortable (and expensive) lingering problem. It can be very uncomfortable at times, particularly when pregnant is is difficult to get the right dose of DDAVP.

Not sure what prompted me to look online for others with Cushings Disease/post adrenalectomy, but I have never in my life met anyone else with my condition and my endocrinologist says she has only one other patient with adrenal problems, but that person still at least has 1. Of course doctors can’t tell you who their other patients are anyway. Obviously when I was actually suffering from Cushings there was no Internet. I guess it would just be interesting to compare notes about living without adrenal glands. Since I was so young when it happened it is all I’ve known and I’m thankful for how basically normal my life is. I see too that I can encourage people that although I do take 3 medications multiple times daily, I basically have a normal life, including 4 normal, healthy children ages 9, 7, 5, and 2.

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Tina H (TinaHardenMississippi), Pituitary Bio

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Hi everyone! I’m 41 yrs old, I live in Mississippi with my hubby & our precious 14 yr old daughter.

I have suffered with so many health problems since I was around 16 yrs old.

I was just diagnosed with Cushing’s in Sept. 2013, I found out it was from a pituitary tumor in Nov. 2013. I had an IPSS in April 2014 and surgery to removed pit tumor June 13, 2014.

Contact Tina here.

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Cathy L (CathyL), Pituitary Bio

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I am 55 years old and my symptoms began long ago I believe.  I have had my tumor out and have not had any recurrance since 2009 when I had it out but unfortunately am still a little paranoid (to the extent that I will spend $100 on a saliva test once or twice a year) when I have any symptoms.

1998 out of the blue started having heart palpatations at night ( endocrinologist still insists that was not part of it but it stopped when my tumor was removed!!!(So far have yet to find an endocrinologist that I love…very narrow minded and refuse to admit how little they really know about Cushings).

2003 started Natural Progesterone cream due to fibrocystic breasts and low libido & just general breast cancer prevention.  No MD ever had a problem with that.

2005 – 1st saliva test just personal curiosity about hormone levels.

2006 started feeling lump in my throat when swallowing so went to ENT —found nothing out of the ordinary (with 20/20 hindsight suspect it was the supraclavicular swelling starting internally.

2007 upper GI just to be sure nothing in my throat per ENT referral–found nothing.

2007 starting to show supraclavicular fat pads 2 MDs & 2 surgeons seen for those & none of them picked up on the Cushings from that. Also had complained to my OBGYN @ the sensation of my uterus dropping out of my vagina — he saw no physical reason for this sensation but with cental obesity getting slowly worse (155 compared to my normal 135 lbs) i suspect there was downward pressure esp when walking & standing for long periods of time.

Finally in 2008 one of my MD patients suggested Cushings & BINGO everybody suddenly saw the light.  Abdominal CTs showed no adrenal problems MRI showed 5mm microadenoma (well circumscribed) .

My brother in law is a neuro-surgeon & in our area if you ever have anything weird going on you go to Duke but he said in this particular area you want UVA (a “Pituitary Center of Excellence”).  Dr. Ed Oldfield took out my tumor & so far so good.  I had to supplement cortisal at first but within 6 months I was off it & my body was making its own.  I feel that I was very lucky.  They say that the majority of MDs go thru their entire career without seeing a case of Cushings (OR knowing that’s what they are looking at). I would definately recommend not just letting any Joe-Blow neurosurgeon do your surgery – the more they have done the more likely the success.

I’m sorry this IS an update of my just submitted bio & I don’t know what my URL link is.   But I do feel that the 4 time cortisol saliva test was how mine was diagnosed because my morning cortisol which is all the MDs ever wanted to take was never off the charts IT WAS MY PM CORTISOL that gave it away.  Then total urinary cortisol measurement.  Sorry but I thought this was an important addition.  Yayy saliva testing!!!

Contact Cathy Leigh, DDS here.

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