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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

Amee (Amee), Adrenal / Pituitary Bio

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adrenal_glands
Hmmm, where to start? “Hello” to one & all, & how I wish I had discovered this friendly & helpful site 3 years ago. Ah well, better late, than never, eh?

Anyway, back to me : in a nutshell – 47 year old single female, 87kg, 5’4″, Post Cushings Syndrome through Adrenal tumour & subsequent unilateral Adrenalectomy I’m now Hydrocortisone (HC) dependent , Hypothyroid (just switched to NDT & T3 combo from synthetic T4 & T3), Pituitary microadenoma.

Now for the details…..are you siting comfortably? I’ll try to keep to the plot ! Suffered with bouts of fatigue & depression since my early 20’s. Spells on different types of anti-depressants which didn’t help me much.

Skip to 2004,weight going up despite no change in eating/excercise habits (those intermittent years were filled with seeming to pick up every bug & cold that was going around & weirdly taking longer than others to get over illness) prescribed Zoladex implant to relieve very painful & intolerably heavy periods, along with severe mood swings.

Tiredness is now just an unwelcome fact of life for me, weight still increasing gradually. Developed Psoriasis.

June 2012 diagnosed Hypothyroid after completely breaking down in GP’s surgery & being referred to Endocrinologist. Signed off work for foreseeable future. Prescribed Levothyroxine, Zolpidem & Ramipril, weight goes up more. More investigations pinpointed extremely high cortisol levels, (I have all the physical signs of Cushings at this point – but Endo has not even mentioned the condition to me!)

Meanwhile referred to Neurologist for my now weekly migraines, prescribed Propranolol & he & Endo agree on cranial MRI scan to help both of their cases with me. Full body scan also booked. In the same week I learnt that I had both a tumour on my right Adrenal & also a Pituitary micro-adenoma. More tests which determine that it is the Adrenal tumour causing my Cushings (oh, & I had to ask Endo if what I had was Cushings – as he had still not even uttered it’s name to me! )

Unilateral Adrenalectomy performed Aug 2013 (had to fly 200 miles to have it done – alone – haven’t told my family who live 300 miles away about either tumour).

Post op weaned down from 40 mg to 17.5mg HC per day, over few months. Feb 2014 went into adrenal crisis & rushed to hospital – remaining adrenal obviously not working yet.

Since then, have had 9am bloods every 2 months & follows up with Endo & still no sign of life in Adrenal. Have lost only about 4kg max since the op – still obese & unable to loose weight & still have the classic Cushings apple shape.

In Aug 2015 returned to work full time, in a downgraded role, & have to up dose to 20mg HC just to get me through working day. Begged Endo for T3 to try alongside the Levo & was granted in Nov 2015 . Slight improvement at first, but short lived. Also i asked to come off Zoladex implant, to see If that side of things are any better yet. No period yet. Shattered & aching, have no social life or energy & spend weekends resting in lieu of working week & in prep for the next one, waning to be alone.

Grasping at straws to feel better so am now (since mid April 2016) self medicating on NDT & T3 as Endo does not support prescribing it. Endo does not want to see me now until Sept 2016 , when I am due an MRI again to check on the Pituitary tumour size/growth & have next 9am bloods.

That’s about it medically………quite enough for me, thanks ! P.s I have bad brain fog (& also Sinusitis at the mo) so may well have missed something & will probably remember it in about 3 days or so !!

Thanks for reading & welcome to my world : /

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