Home

Archived Interview: Rebecca D (Rebecca D), Pituitary Patient

Leave a comment

Hi Ladies and Gents, my fellow Cushies!

I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!

As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.

In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”

Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.

Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).

So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!

After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*

I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be…  You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂

Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy

Stay Beautiful xoxox

Archives are available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Nicole S (NicoleS), Adrenal Bio

1 Comment

 

Hi, I’m Nicole. I’m 37 years old and was diagnosed with Cushing’s disease in May 2017 after suffering through a high risk pregnancy, early delivery and post partum pain.

I had a left adrenolectomy in August 2017 and have been recovering ever since. I take 27.5 mg of hydrocortisone daily and deal with steroid withdrawal symptoms each time I taper my medication. I have lost 40 lbs and am doing much better post surgery.

I’ve never met anyone else with Cushing’s and wouldn’t mind to connect with some others who understand the experience.

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Nicola C (Nikkikicks), Undiagnosed Bio

Leave a comment

 

Hi 🙂 my name is Nicola and I’ve been sick since October of 2017.

I kept gaining weight around my face and lower belly despite not eating due to a horrible flu and sinus infection type sickness where I hardly ate for 2 months.

My doctor gave me anti depression meds, sleep apnea tests, hiv test and told me that I was just not active or eating healthy enough. I swore I had pneumonia as I could hardly stay awake and was so so weak. I had a car accident in 7/17 and so I had prednisone and that is when my symptoms started.

I have also been on hydrocortisone trigger point and epidural injections since then and kept feeling worse and worse.

I am trying to cope with constant sinus infections and still juggle work and my family.

I am 40 lbs heavier and I choose between working out, cooking healthy or functioning at work. The cold Colorado weather is like stabbing me with a million tiny  knives.

My family thinks I’m being dramatic and my boyfriend thinks that I can still work out 4-6 days a week as I did before my car accident.

At this point I’m trying not to cry or mourn the loss of my healthy lifestyle- I’m literally fighting for my life.

I’m just going to get my official diagnosis and then do all I can to recover.

God bless everyone and I pray that we get better super fast.

My cushing Dr has been a bit abrasive with me. But I will keep you posted.

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Irene, Pituitary Bio

Leave a comment

FOR Irene Fox, everything seemed to go wrong all at once. It was 1999 and she thought her life was falling apart. She felt her relationships had deteriorated.

Her face and stomach became bloated. Meanwhile, her arms and legs became very thin. Her blood pressure was extremely high. The sunlight irritated her eyes.
One day the mother-of-two from Bray, Co Wicklow, lost the use of her leg. Then she started falling. “I was losing power in my arms and legs,” she recalled.
Irene was 47, so, she reasoned, maybe it was just the menopause. But she went to the doctor and found out that it wasn’t. She was sent to St Columcille’s Hospital in Loughlinstown for a battery of tests which went on for more than two years.
In 2002 Irene was diagnosed with Cushings Syndrome, following an MRI scan. It emerged that a tumour on her pituitary gland was causing an excess production of cortisol, the stress-relieving hormone. She had an operation in Beaumont Hospital in August 2003.
“Before the operation I couldn’t walk for more than a few stops before falling down,” she recalls.
Irene’s condition did not improve following the operation, however. She discovered she was unable to keep any food down. In October she collapsed and was brought back to Loughlinstown where she stayed until January 2004.
“I was in intensive care for two weeks and then in the general hospital for 10 weeks.”
Irene, now aged 59, was told she had to increase the amount of steroids she was on.
“I take hydrocortisone and I wear a hydrocortisone bracelet to inform people that I take it.”
These days the mood swings are gone and her eyesight is better. “I walk with a stick but I don’t fall any more — the symptoms were caused by the tumour on the pituitary gland. I’m told that it affects different people in different ways.”
There should be more public awareness about the pituitary gland and its functions, she says.
“I feel there should be more awareness of the pituitary gland and what can happen if anything goes wrong — it’s one of these things that people just don’t seem to know much about.”

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Vicky (Vicjy), Adrenal Bio

2 Comments

Hi. For the last couple of years I have had different symptoms. I’m 45 and feel like I’m 70. I think it started about 3 years ago. I would break or fracture something and it would take forever to heal. I gained over 60 lbs. I’m always tired yet don’t sleep well. I look like I’m 9 months pregnant but skinny arms and legs. Stretch marks on body. Round red Face that constantly feels hot. My back has a hump and my neck has fat pads. Finally, prehypertension. I also have intense itching especially in a soecific area. Oh, let’s not forget anxiety and focus issues. .

I had enough. About 7 months ago I began going from doctor to doctor. Every test came back fine and they dismissed me. Finally, I went to an endo. She tested me for Cushings. I gad 5 tests and all came back positive. All this took time but I tried to be patient. I know this is horrible but I was actually happy to finally have an answer to my issues. I then had a CT scan and found an afonona in my left adrenal gland.

I had surgery a week ago today. I’ve heard so many different stories of figuring out if they have cushings but little about their recovery. I’m hoping to hear people’s recovery stories. I’m actually much better than I thought I’d be. I’m weak, still some pain at surgical sight, out of breath, and very emotional. Also, hard to do an intellectual activity before feeling overwhelmed.

Can you all share your journey? I’m taking 40 mg of hydrocortisone a day. I was wondering if anyone had itchiness as a symptom. Doctors have told me that they haven’t heard of that as a symptom of cushings. It is horrible with me and am hoping it will go away with this surgery. I feel like it has gotten better.

Looking forward to hearing about some recovery stories and feel free to ask me anything to help other understand what they are going through.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Lisann, Undiagnosed Bio

1 Comment

Originally from December 20, 2008

 

Being checked for Cushing’s. Have adenoma, long term hydrocortisone user, Graves Disease, a lot of the symptoms.

Don’t know much about Cushing’s.

Having cortisol,diabetes,lipid,blood test all next week.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Vic (Tori276), Undiagnosed Bio

Leave a comment

 

Numerous stressful situations in the last 8 years (death of a parent, breakdown of long term relationship), weight gain around truck and abdomen (despite not eating any more), bleeding when exercising (even what I would consider moderate), history of hydrocortisone use on face daily for last 26 years.

Started experiencing weight gain, and muscle pain and weakness with serious fatigue within last 3/4 years. Have recently developed stretch marks on abdomen and worsening lethargy, muscle pain, back pain, hip pain and gastro-intestinal issues etc. I have ALWAYS suffered weakness in my ankles when stressed and they often give way.

Currently under a lot of stress of work, but most of the pain went away with lots of walking while on holiday for a week.

I previously tried Agnus Castus a few months back for what I thought were hormonal issues, but suffered bad side effects and stopped taking them.

Recently took all the hormone and thyroid blood tests and had high blood pressure, high cholesterol and high prolactin. I was advised to have a cortisol test given my symptoms of stretch marks etc. I am currently waiting on the results…

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Older Entries

%d bloggers like this: