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Nikki C, Steroid-Induced Bio

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For Dunedin woman Nikki Cockburn, being one in a million is not a compliment.

She is one of the very few New Zealanders with Cushing’s syndrome, a very rare disease caused by excess production of cortisol.

Long afflicted by skin disease psoriasis, she had been prescribed the steroidal cream Dermol.

Over the years that she rubbed the cream on her skin she unknowingly boosted the cortisone levels in her body to the point where the symptoms of Cushing’s syndrome began to manifest.

“I was very unwell for a lot of last year. I was getting headaches a lot, my hair was falling out a lot … I had constant diarrhoea and because I have friends in their 30s who had bowel cancer I thought it might be that, but it went away again.

“I had insomnia, overheating, constant sweating, impaired cognitive function, and I was getting big, thick purple stretch marks over about 70 per cent of my body.”

Eventually a friend, who fortunately had heard of Cushing’s syndrome, raised that as a possibility.

“I went and looked it up and went ‘I’ve got that, I’ve got that, I’ve got that’ – it was like ticking everything off of a list.”

An official diagnosis soon followed, but during that consultation came the shocking discovery that all Cockburn’s agony could have been avoided.

She was told that in 2014 her doctor had received a letter from a dermatologist warning Cockburn should stop using Dermol immediately.

“I got offered the chance to meet him [her doctor] just after I was diagnosed but I knew I was so angry and upset that there wouldn’t be a positive outcome, and I’m a forgiving person,” Cockburn said.

“I ended up meeting him last month, took a support person and read out a letter setting out everything I have been experiencing … He apologised profusely and cried quite a lot in his talk with me. I could tell he was really remorseful.

“He was also honest. He told me that the alert wasn’t put on my file in 2014 – it was in fact put on there in 2012, which upset me even more.

“He had seen the sentence there, but somehow had missed it,” she said.

The clinic and doctor, which Cockburn did not wish to name, have since reviewed their processes and procedures for dealing with patient alerts and held refresher sessions on psoriasis treatment.

Cockburn now uses Dermol sparingly and is trying to replace it with a non-steroidal cream for her psoriasis.

Cushing’s syndrome, which affects between one and three people in every million, is an invisible illness. With make-up, a long dress and stockings on there are no obvious signs of anything being wrong with the outgoing 36-year-old.

“A lot of what is going on with me is going on inside, or are things you couldn’t see unless I was wearing shorts and a T-shirt,” Cockburn said.

“I’m normally in bed or lying on the couch, because one of the big side effects for me has been lower back pain and I now have gynaecological problems as well.

“Over the past few months my back pain has been horrific – I am in pain sitting here now – but I guess if you talk to anyone who is in daily pain they kind of get used to it.

“I’ve forgotten what it is like to feel well.”

Cockburn decided not to pursue a health and disability commissioner complaint, but the Accident Compensation Corporation is investigating her situation.

With treatment, Cushing’s syndrome can be managed, but Cockburn’s prognosis is uncertain, which has led to anxiety and panic attacks.

“I have been very open on Facebook – I blog about my journey, what is happening to me,” Cockburn said.

“What has happened to me has happened – you can’t change it, you can’t take it back – but I sure as hell can stop it happening to other people by raising awareness.”

From https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12232161

Emily B-C (EmilyBC), Undiagnosed Bio

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undiagnosed3

 

Hi.  I am a 40 year old female who has been feeling “not quite right” for almost 10 years.  I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years.  I continually have vitamin D deficiency issues.  I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.

This year, I started feeling worse than usual.  I have zero energy and my brain is in a perpetual fog.  My muscles and body ache, my face is round, and I have gained 40+ lbs over the years.  There are days that I physically cannot get out of bed.  I have fainting spells and a racing heartbeat at times.  I crave carbs and salt.  There is not enough water in the world to drink and I have to run to the bathroom frequently.  No matter how hard I try the weight will not come off.  When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.

I was an avid equestrian- 3 day eventer.  I was riding and showing no less than 3 times a week.  I was getting fit.  Now I am just a useless blob that can’t do anything.  I have been pushing to go to the barn to just groom and be with my horse as much as I can.  

My doctor found that I have an unusually high blood cell count a couple of months ago.  I was sent to a hematologist to find out why.  We did so many tests I quit counting.  The conclusion was that I am not sick enough to be sick.  So many tests were coming back normal or high normal.  No lupus, no leukemia, no answers.  I finally asked about Cushing’s because I have a majority of the symptoms listed.  My doctor was skeptical, but agreed to let me do a 24 hour urine test.  It came back high.  This has allowed me to move to an endocrinologist.  I also have high levels of reverse T3.

So far I feel like a complete lab rat.  I have now done 2 salivary Cortisol tests and have another urine test this week.  One of the 2 saliva tests came back very high.  My doctor said we have to do yet another saliva test to test the last results.  After all of this we will do a dex suppression test.   

At this point I am very depressed that I am unable to live my life.  Riding is not an option because I just get “floppy” and risk falling off.  I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.  

I am so lucky to have a doctor that believes my symptoms are real.  She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do.  For now, I am just a good lab rat.

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Rita (Rita), Steroid-Induced Bio

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Hello to those who are frustrated & suffering!

My real search for a diagnosis began vigilantly just over 2 years ago. I was extremely hot,exhausted,weight gain (unexplained) and not sleeping well and sleeping all the time but extremely fatigued!!! My face became very round and my facial & body skin was a nightmare.

My husband kept saying that he thought it was systemic but I wasn’t sure. And, this sounds so sill but completely true, I was watching an episode of Doc Martin (UK series) where a woman was having trouble and he told her she had Cushings. Well, I had never heard of this disease so I looked it up on the internet and told my husband that’s what I have. Of course, he said that I was being silly.

I had very upset stomach most of the time to I had an endoscopy & colonoscopy where large cysts had developed. I also had burning and nagging pain in my upper thigh area thinking it was my Lymph nodes. Many more cysts were discovered on my ovaries and all the doctors cold focus on were the cysts and telling me that my blood pressure was too high and that I needed to lose weight.

I few months later I noticed small purple striations on my abdomen and just knew I had Cushings. So, I asked my doctor if he could run cortisol test on me and he said no problem. I had also told him at this time that I was using a steroid cream to control my eczema and he said that would not cause not effect me in such a way to cause such problems.

I had beeen to the emergency room, had 4 CT scans, atleast 7 ultrasounds, 2 MRI’s and so many blood tests that I had lost count.

Another doctor had recommended that I see an Oncologist so I saw 2 of them…..still no idea and 2 more visits to the emergency room.

I sent all my files and tests to the best Endocrinologist I could find and still had to wait 6 months for an initial appointment.

During the 6 months of waiting to see my Endocrinologist, my body had taken a severe turn for the worse. I could barely step up onto a curb and would spend 3 weeks straight in a bed.

I was extremely depressed and felt like I was dying!!!

April of 2014 my long awaited appointment to see THE BEST ENDOCRINOLOGIST in the state finally came!!!!! He took one look at me and said you have Cushings without a doubt!!!! he saw all the other files and tests that the other doctors had done and said they all did the same exact tests and have absolutley no idea what they are doing.

This is the best doctor I have ever been to see in my entire life, he spent over 1 hour with my during my first evaluation. (Please know,that he is not even covered by my insurance but I didn’t care……shelled out $510 and it saved my life.)

He would stop asking me questions until he got to the root of what was causing the Cushings. And it was the cream that I was using to control my eczema!!!!!!! Yes, please know that Cobetasol Proprionate will cause Cushings if used on a long term basis.

I had no warnings or instructions from my Dermatologist. He just said use this on your eczema.

Dr. Neil Breit saved my life!!!! He said that I was hands down, the worse case he had ever seen!!! And he said that I would have definitely been dead in 1 or 2years at best.

If you live in the Northeast, please seek out this doctor. He is the best and very passionate & loves his work. He truly cares and brings lots of smiles with his treatment!!!!j

Dr. Breit still spends 1 hour with me on every office there. And I still pay full price but do not mind, because he saved my life!!!

Also, right before my diagnosis, I discovered GERSON THERAPY. Regardless of whatever is wrong or just being healthy, juicing helps me immensely with energy and just feeling better as a whole!!!

Thank you for enduring my long story!!!!! Keep fighting for your diagnosis and don’t stop till you get one!!!

Thank you kindly for reading my story,
Rita in New Jersey

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