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Voices from the Past: Britney (PandaBearHobbit), Undiagnosed Bio

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I’m a 25 year old who’s in the middle of being tested for Cushing’s.

I have very high anxiety, hirsutism, fatigue, muscle weakness, can’t lose weight, acne, irregular periods, very high testosterone (163, normal is below 79 for women), always thirsty & pee often, ect.  My doctor referred me to an endocrinologist, and I was diagnosed with PCOS.  My cortisol levels were never tested.  I was put on birth control & metformin and the doctors told me that would help with everything.

After being on these medications for two years and seeing little to no improvement I started to do my own research.  I went to my endocrinologist and brought up the possibility of Cushing’s.  She assured me that it is too rare and I am fine.  I would’ve just taken her word for it, because I figured she knew what she was talking about, but my wonderful husband pushed for us to go ahead and do the tests.  I’m SO glad that he did.  All of the many, many tests have come back abnormal.  I’ve never had so many blood, urine, & saliva tests in my life!  After months of testing, my doctor said that Cushing’s is looking more and more likely.

I struggle immensly with weight loss.  My mother is a personal trainer and has always been in amazing shape.  She & the rest of my family told me I wasn’t doing enough to lose weight.  At one point I was working out 4 hrs EVERY DAY at the gym in addition to having a very physically demanding job.  I was able to lose a couple pounds, but that was it.  I eat healthy, and I’m not just saying that… I really do!  haha!  I’m a vegetarian, eat loads of fresh fruit & veggies, & try to keep my caloric intake to about 1500 calories a day!  I recently found information that a lot of exercising can actually raise my cortisol levels, which are already high.  So, I’ve taken my workouts down to brisk walking for 30-45 min.  Which, after years of intense working out, is weird for me.  I have never been able to lose weight on my belly and face.

I really struggle with anxiety & Irritability, and I hate it.  I get anxious about everything and it drives me crazy.  I compete in dog agility & get so anxious before & after I go into the ring that my pulse is over 180 & I shake (Just while I’m standing there!).  I love the sport so much, though, that I’d never give it up!  My dogs are my life!  I want to be able to compete & be able to enjoy it more, without all the intense anxiety!  I lack emotional control at times, and it tears me up.  I am a very loving person, and hate putting my loved ones through that.  When I lose my temper, I can’t control myself.  Once I come down from it, I feel aweful & can’t believe the things I said or did.  I feel like a crazy person!

I often have mental fogginess & insomnia as well.  Trying to focus on something is difficult, which made college a real struggle.  It’s not rare for me to go through patterns of insomnia, where I can only sleep a few hours a night.

Hoping to get officially diagnosed soon, so I can move forward with treatment.  I’m so eager to get all this figured out and feel “normal” again!

~~~

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Voices from the Past: Sonja D (Kiwi), Ectopic Bio

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Diagnosed in 2003 with a Carcinoid Lung Tumour which was surgically removed in May 2003.

After a number of years of “not feeling myself” and consulting with the family doctor, it wasn’t until I showed him hair growth on my face and asked him if we had completed all and every test possible related to hormones.

Two tests to do; one was cortisol and the other testesterone.  Results were in the next day, showing cortisol levels four times the normal range.  Bingo!  it was like I had won the lottery.

A flurry of additional tests were conducted, a visit to an Internal Medicine Specialist and finally a referral to the Endocrinologists at the University Hospital.  On meeting the endocrinologist her first words were: “It’s very nice to meet you.  I’m very excited you were able to come in today’.  Is she nuts, I thought.  Since when is a doctor “excited” to meet a patient?  This was the beginning of a most wonderful patient/doctor relationship and it continues today along with the full team of endocrins at this hospital.

It was confirmed I had Ectopic Cushing’s Syndrome in February 2011.  My health deteriorated rapidly with no sign of any tumour which was likely the cause of the extremely elevated ACTH and Cortisol levels.   A Bilateral Adrenalectomy was performed in May 2011 and in November 2011 the elusive lung tumour was sighted in the same location as the one removed in 2003.  It has not grown in the last six months so it is being left “undisturbed” at this stage.

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