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

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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

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Brian R, MENS Bio

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I became sick July 2014, August my family physician sent me for blood tests etc. by September, I saw thyroid surgeon, had CT and MRI of head throat area. I went to local hospital for the tests. The tests were inconclusive. Bad equipment, I later found out.

Surgeon said we should monitor condition and wait or we could do exploratory surgery. I CHANGED DOCTOR.

Next I went to Nuero for tests, nuropothy had already set in my legs and I was falling all the time. Rapid weight increase, tired and cramping all the time, irritable and miserable. She sent me to endocrinologist and more tests, definitely showed para thyroid adhesions, had surgery in October 2015, didn’t do both sides and would have to have surgery again in December.

Returned to work and immediately tore my shoulder muscles and was finished from work, (Workman’s comp) fought having a MRI, I did it anyhow, went to surgeon and he wouldn’t operate because of my health issues.

In December they removed the growth on other side of para and a lump from thyroid. Four days later I became wheel chair bound.

Now we scheduled the pituitary surgery for February. Wednesday was the surgery and I could get up from bed the next day and walk. (I thoight it was a miracle) Discharged Friday, went for blood test Saturday and tried to get some rest.

By Wednesday I returned to the emergency room with 103 temp and sleeping all the time. They put me in ICU and I spent the next 10 days there.

Upon release we treated the body shutdown with cortisol steroids and continually adjusted my blood pressure meds. Three months later I started therapy to learn how to walk again. I would fall if I turned my head, left or right. Balance and equilibrium was really bad.

I finally returned to play golf in October, exactly 2 years from my first surgery. Weak, but I was able to drive, walk, (gingerly) and socialize.

It is a terrible disease and in July this year I felt it was back and blood tests confirmed my fears. I won’t go into my current conditions.

We all know how this saga plays out.

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Sahana (Sahana), Adrenal Bio

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My daughter had hair loss since age of 15
At 16 she had a hump at the back of her neck
Age 17 had anxiety, negative thoughts and memory loss.
Weight gain, acanthosis and menstrual irregularities.

I had shown her to many dermatologists for hair loss. At 16 had shown her to 2 endocrinologists
At 17 to psychiatry, gynaecologist and 2 more endocrinologists finally arriving at diagnosis after cortisol and ACTH tests followed by dexa suppression and CT abdomen.
She was operated laparoscopically and is now 7 mths postop.
She is off steroid supplementation and is improving steadily.

I WISH THERE WAS MORE AWARENESS ABOUT THIS DISEASE !!
My daughter has suffered a lot and I pray she recovers completely 🙏🏼

 

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A Stunning Woman Reveals The Devastating Secret Behind Her Weight Gain

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Vicki Perez first noticed she was gaining weight back in October 2015 – and in less than 12 months she had ballooned from 9st 4lbs to 12st 4lbs.

Her face began to bloat and her feet swelled so large that she couldn’t even wear shoes.

The shocked mum-of-one learnt she had Cushing’s disease, which is caused by high cortisol levels.

But it wasn’t until last January that she found out it was due to a deadly tumour on her pituitary gland.

After two surgeries to have the tumour removed, Vicki has finally began to recover and is sharing her story to raise awareness.

Vicki, who is currently studying to become a dental hygienist in Florida, said: “The gym and fitness has always been my passion.

“I train every day. So I was shocked when I noticed my face was getting puffy and my hands and feet were swelling like water retention.

”They were so swollen I had to wear men’s shoes and my clothes didn’t fit.

“I felt bloated all the time and I didn’t want to leave the house.

“I continued working out at the gym not realising I was causing damage.”

In February 2016, she noticed strange rashes on her hands and body and was rushed to hospital in anaphylactic shock.

Vicki said: “When I saw the rashes I thought it was an allergy but the next day I work up and I couldn’t breathe.”

Despite numerous tests, medics continued to deny there was anything wrong.

The fed-up mum decided to see a Cushing Disease specialist at The University of Alabama.

She said: “I took my MRI and CT scan and they saw the tumour was in my brain.

“My hospital had completely mis-read it.”

After further tests, doctors were able to confirm it was a brain tumour.

She said: “I’m not sure how long I had the tumour. I thought I was going to die.”

After an initial surgery to remove the tumour on the left of her pituitary in June, and a second op to remove a second tumour in July, Vicki’s health began to improve.

She said: “Two days after the first surgery and my feet were normal.

“I was excited, I felt great, I felt amazing but a month later I was back in hospital for the second surgery.

“The recovery was hard, it hurt to move. I had to teach to walk again and how to run again.

“I was angry and I was crying all the time. It messes with your hormones and makes you think you are crazy.”

The road to recovery has been long and after eight months, Vicki still has a way to go.

But now her weight is down to 10st 10lbs and she is able to wear shoes and her normal clothes again.

She said: “It’s a slow process.

“I am not 100% back to normal and any emotional stress can be dangerous for me and cause me to go into shock.

“But I am starting to see improvements and I’m just focusing on my son and school.”

Vicki added: “My son really struggled with seeing me so sick but now I am able to spend time with him, he is so much better and not acting out at school.

“He’s the most important thing, I couldn’t have got through this without him.”

From http://www.dailystar.co.uk/diet-fitness/594013/Gain-weight-bikini-fitness-model-brain-tumour

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Wendy, Pituitary Bio

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pituitary-gland

 

I was diagnosed in April 2016 with Cushing Disease caused by a pituitarty adenoma. I believe I have struggled with these syptoms for over a decade.

I had a goiter removed from my thyroid in 1997 and have had numours biopsys on other nodules on my thyriod over the years.

Fortunately, I changed doctors and walk into Dr. Levetan office in Chestnut Hill Hopital. The discovery of my high cotisal levels, many tests, MRIs and a cat scan confirmed my diagnonis. She gave me many answers to different symptoms I have been struggling with that seem to be worse by the day.

In May, I met with Dr. Salvatori at John Hopkins and I am scheduled for surgery 8/10/2016.

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Toni (Toni), Adrenal Bio

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adrenal-location

 

Diagnosed with cushings syndrome, right adenoma. Reviewed right adrenalectomy after 3 years of being bounced from doctor to doctor. Diagnosed with high blood pressure, high cholesterol. Hair loss, intense itching, bruising, weight gain, depression and osteoporosis, eith multiple fractures, torn ligaments and tendons.

Finally after researching a medication that one endocrinologist put me on for the osteoporosis I found another endocrinologist in NY at colombia presbyterian hospital that specializes in premenapausal idiopathic osteoporosis and this medication. I got an appointment with her.

On one review of my history she sent me for 24 hr urine cortisol which came back through the roof.

She then refereed me to their adrenal specialist had a CT scan which revealed a 3.5cm maas on right adrenal gland. Had surgery the next week and am now 4 weeks post op.

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Roseglass (Roseglass), Adrenal BIo

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adrenal_glands

 

I have been ill for 9 years. I was experiencing severe anxiety/depression, profuse sweating, extreme hypertension, a non-stop migraine, and living in a constant state of fight-or-flight. Seven years ago, a full body CT scan revealed a left adrenal tumour. It has taken until this past year (actually just a few months ago) to finally get a diagnosis of pheochromocytoma from the medical field (no one listens to the patient – I have been telling them about the pheo and that I have Cushings for 7 years! My cousin died from an undiagnosed pheo.) Fortunately, I have wonderful long-term family doctor and more recently a great endo who have given me alpha and beta blockers to keep the symptoms more tolerable while we waited for a confirmed diagnosis.

Besides the above symptoms from the pheo, I have all the typical Cushing’s symptoms, I have also had a stroke, at least one TIA, and a heart attack. My heart has become enlarged and I can hardly breathe. After the heart attack, my weight took a huge jump. I had already become quite large but then I gained 7″ around the middle in 4 weeks. I complained to my doctors that something was terribly wrong but they kept saying I was just eating too much (sound familiar?). I also have a variety of lesions covering a variety of organs.

Due to the diagnosis of pheochromocytoma (via a MIBG), I was sent to a surgeon. The first was an idiot (don’t stand for that – ever – there are decent people out there). Then I was allowed to choose my own team. I found a team in Toronto, at Princess Margaret Hospital, who are knowledgeable and really understand this disease. When they said I had classic Cushing’s, my eyes teared up – finally someone saw it.

I have just had my 1st consultation with them, plus more tests, and am waiting for my 2nd consultation in January when I also expect to meet with the surgeon. It is looking hopeful that I may have my life back. They believe my body will go back to normal: my heart, diabetes reversal, my hair return to normal (more on head, less on chin), pain relieved (I can hardly walk and cannot climb stairs), and other delightful changes …including a normal life span.

I am worried about small lesions developing on my pituitary and right adrenal gland but no one is really looking at those at the moment. I just got word that the left adrenal tumour doubled in size recently so getting this out is the priority. It has been such a long and frustrating process that I won’t feel truly at ease until I have an actual surgery date.

Roseglass

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