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We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

If you are planning to check the button that reads “Would you like to be considered for an interview? (Yes or No)” please be sure to read the Interview Page for information on how these interviews work.

Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing’s patients and has already been asked and answered on the Message Boards.

Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

Please post any questions for which you need answers on the message boards.

 

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Wendy I, Pituitary Bio

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Newly diagnosed (5/2019) with pit tumor, waiting for appt at U of M on 9/26.

 

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Amy G, Cyclical Cushing’s Bio

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I Would like to talk with Mary O!!

I have rare complications with my Cushings Disease.  I am having trouble finding the right doctors in Utah.  I would really appreciate guidance she might have.

I am getting very sick. And my options are becoming more and more limited.

If she has time to call, text or email me I would appreciate it very much.

Thank you.

 

Amy has been contacted.  However, if you know of any helpful doctors in Utah, please comment on this post.  Thanks!

 

 

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Taylor D, Pituitary Bio

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FLORENCE, S.C. – After struggling with a mysterious illness for nearly three years, Florence resident Taylor Davis is using her diagnosis of Cushing’s disease to raise awareness.

Davis was a healthy young adult when she started as a student at the University of South Carolina in the fall of 2015, but soon into her college career, she began experiencing several symptoms, such as weight gain, insomnia and panic attacks. Davis spent the next three years going from doctor to doctor trying to get a diagnosis for her symptoms.

Since her diagnosis, she has been trying to raise awareness through social media about her experience with Cushing’s disease.

Cushing’s disease is a hormonal disorder caused by high amounts of cortisol, or the stress hormone, in the body, according to the Mayo Clinic website.

During her freshman year, Davis began struggling with insomnia and started gaining weight. At the time, Davis brushed them off. Davis’s symptoms progressed to having panic attacks during her sophomore year.

“I’d be driving down the road, and my whole body would start freaking out,” Davis said. “I’d get heart palpitations, my heart rate would go crazy. I felt like I couldn’t breathe. It was intense panic attacks.”

In addition to the onset of panic attacks, Davis’ insomnia got worse, and she continued gaining weight. Davis also began losing clumps of hair, but she searched the internet and thought it was just normal.

The summer after her sophomore year, Davis said. she went to the doctor for answers with little luck.

“My doctor just kind of like brushed it off,” Davis said. “She told me it was probably just stress from school and stuff like that, and that I needed to diet and exercise more, but I was like, ‘A girl can only diet and exercise so much.’”

As Davis started her junior year, she said. her symptoms progressed to losing larger amounts of hair, which left bald spots that she tried to cover with extensions. At the time, Davis attributed the hair loss to bleaching her hair.

Then Davis began craving copious amounts of salt and large amounts of water.

“I started drinking water bottles by the case each day” and having to go to the bathroom frequently, Davis said. “It would just run straight through me.”

By the time the spring semester came, Davis’ panic attacks began causing blurred vision, nausea and dizziness. She said they felt like heart attacks.

Davis’ mother, Amy Lewis, got her admitted to McLeod Regional Medical Center for testing over spring break. Her kidneys were tested. An MRI and other tests were conducted, but Davis received no answers except that she was fine.

Davis’s panic attacks continued to get worse, so she and her mother began researching all of her symptoms for answers. Their research pointed them toward Cushing’s disease.

After another episode that caused Davis to pass out, her family took her to the emergency room. This time, the doctor had an answer: a brain tumor on her pituitary gland.

“It was so crazy the feeling I had at that moment,” Davis said. “I was so relieved, because I was so terrified for months at that point, and no one was going to help me because I had all of these problems.”

After the emergency room visit, Davis had to wait weeks for an endocrinologist appointment in Florence, but the doctor said she didn’t know enough to diagnose her.

She and her mom found an endocrinologist and neurosurgeon in Chapel Hill, North Carolina. The encodrinologist told her Cushing’s disease is too rare for her to have and said Davis needed to lose weight. The neurosurgeon told Davis an endocrinologist would have to prove that the tumor was causing Cushing’s disease before he would take it out.

By this point, Davis medically withdrew from USC because she could barely walk to class.

Determined to get answers, Davis joined several support groups on Facebook for Cushing’s disease.

The Facebook group led her to make an appointment with Dr. Theodore Friedman in Los Angeles, who was able to diagnose her with Cushing’s disease in October of 2018. In November of 2018, Davis had surgery to remove the tumor from her pituitary gland.

Since the surgery, the tumor removal has caused adrenal insufficiency, so Davis has to take a steroid-replacement medicine. She has been weaning herself off the medicine so that her pituitary gland will begin making cortisol again.

Davis has been using social media, especially Instagram, to post updates on her journey with Cushing’s disease. While she was at USC, she was a public relations major, and she has always loved telling stories.

“It just came natural to me as it (Cushing’s disease) started happening to start sharing my story,” Davis said.

Davis said she receives a few messages with questions about her experience every day from people who see her posts.

“ That (Cushing’s disease) really gets to me sometimes, but talking to those people, helping other people and sharing my story, that brings me back up,” Davis said. “That’s what keeps me happy and keeps me from getting to that dark depression.”

Davis said she is also in the process of starting a YouTube channel to document her experience with Cushing’s disease, because she wants to help others as they go through the process of a diagnosis.

This bio is from https://www.scnow.com/news/local/article_9c54e1e6-9615-11e9-84d3-8ff51e77dc88.html

Kendra D, Adrenal Bio

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My journey to writing this bio started in 2014, 34 years old.  I ended up in an emergency room in Denver while travelling with severe and unknown abdominal pain.  It came on rapidly during a lunch and I was taken to hospital via ambulance from my hotel room.  Luckily, in Denver, you get a CT scan when there is something wrong with you.  The source of the abdominal pain was never determined, however, the attending physician gave me a CD of the CT, letting me know they had observed a small tumor on the left adrenal gland and even though likely benign, I should discuss with my family physician in Canada.

Back home, I did let my family doctor know and they dismissed it.  Over the next year, I struggled with weight gain and depression, since a surgery the year prior to treat WPW (Wolf Parkinson Whyte syndrome).  It’s an extra electrical pathway in the heart that produced rapid heartbeat (SVT), starting in 2011.  3 years and several physicians later, I underwent and electrocardiogram catheter ablation after a trip to the emergency room with a heartbeat of over 200 BPM’s for approx. 5 hours.  Luckily the emerg room physician was also a cardiologist.  He recognized a small irregularity on my ECG.  I was admitted that night and had the procedure done in 5 days.  After that procedure, I noticed a decline in my energy.  Started gaining weight and just didn’t feel like I had.  I chalked it up to the rapid heart rate accounting for all the gusto I used to have not being a medical professional and that being the only real change in my life to date.

I went to see a naturopath to discuss my symptoms and try to find some answers.  I was ‘diagnosed’ with adrenal fatigue syndrome which I’m sure many of you have heard of.  And you also know how much the mainstream medical community thinks of the ‘condition’.  Not much.  But the books I’d read fit my situation and I went down the road of hormone replacement therapy.  Months of hard to find prescription pills and creams that are not covered by insurance became the bain of my existence and I wasn’t seeing measurable improvements.  I became frustrated and started cleansing, diets, supplements, and working out regularly.  Between strict diet control and working out hardcore daily (crossfit, running, weights), I started to feel pretty good.  I also started taking antidepressants, which really pushed my energy levels up, especially in the initial 6 months.  Then they would plateau, so I would try something different.  Same thing over and over.

That was the last 3 years of my life.  Trying a new drug.  A new routine.  A new relationship.  A long yo yo of up’s and down’s.  If I gained weight and felt lousy, I attributed it to the pills not working anymore.  A relationship that wasn’t working.  Stress.  Work.  Being a single parent.  If I changed something up, I could lose the weight.  If I looked good, I felt good.  That was the litmus test – never mind the depression and anxiety that was ever present.

In 2018, I began to put on weight.  I began to suffer from unmanageable anxiety/depression.  I was so tired, I completely stopped going to the gym.  I went to see the doctor about a new antidepressant.  In the clinic, they noticed my blood pressure was unusually high and started to monitor.  I was prescribed a high blood pressure medication as well as a new antidepressant.  The antidepressant was intense.  I started reading up and what I read scared me.  In conjunction with high blood pressure, I started to really consider that I’m possibly doing more harm than good.  Plus, I was not feeling better like I had in the past.

I quit both the antidepressant and the HBP meds.  Started up with the more natural approach – CBD.  Supplements.  Giving myself a break from hard core exercise.  And reading.  Everything.  In 6 months, I had gained approx. 40 lbs and weighed as much as I had the day I gave birth to my son.  My depression was unmanageable.  I was going through a lot of work/relationship stress as well.  I had tried the ‘chill out’ approach and it simply was not working.  I went back to the doctor, who referred me to an endocrinologist.  I remember bawling in her office bc I felt like a failure and a total loser.  Admitting how my weight had spiraled out of control and how I could not manage my mental health and I’d stopped taking my prescription for HBP – I felt crazy.  She looked me in the eyes and promised to do everything she could to figure out what was wrong.  In that moment, I felt like maybe there was something wrong, maybe I wasn’t crazy.  TBD.

So we spent the next year doing all of the tests.  High cortisol being the constant result.  I started back on a HBP med that acts also a diuretic – which at least helped with water weight.  At the end of all the testing, my endo revealed that she suspected cushing’s syndrome and since we knew there was an adrenal tumor from way back, we re scanned and determined it had doubled in size.  Good chance it could be the culprit, especially if increased in size, it’s a good indication that it is active.  She referred me to one of the best endo surgeons in Calgary and let me know that if her diagnosis did not make me a candidate for an adrenalectomy, the surgeon would not perform it.

I’ve spent the last several months not knowing what to expect.  I think many of you can relate to living in a state of being thankful for an answer but still in disbelief.  I still battle in my head with ‘did I cause this’, ‘is this actually what’s making me sick’, ‘what if I remove my adrenal gland and I never feel good again’, ‘what if the tumor isn’t the culprit’.  I have one last CT scan upcoming Aug 7, prior to setting a surgery date and suspect it will fall within a few weeks of the scan.  I’m looking forward to getting it over with one minute and then feeling really scared the next.

I know I can’t live my life in my current state so I have to proceed with whatever solutions are being offered to me.  That rationale promotes a positive mindset.  But it’s one day at a time.  Some days I feel great, some days I can’t get out of bed.  Still living a yo yo life.  My work keeps me pre-occupied and gives me a reason to get out of bed in the morning.  My therapist helps keep me sane.  No antidepressants.  My family has been a great support.  Most people have never heard of Cushing’s so I just stopped telling people. It is isolating.  People assume I’ve gained weight bc people get fat.  And I have to just embrace where I’m at and not let that affect me so negatively.  This is a rare disease.  I’m excited to share more of this journey on the other side.  These bios have given me such peace of mind over the last several months.  Thank you for listening.

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Gina, Pituitary Bio

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The pituitary gland

 

 

PCOS and I have a 2mm pituitary microadenoma

Some salivas high most are normal. I went to Dr. Findling and he was beyond rude and a waste of time.

I need a doctor close to Illinois.

 

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Kim H, Ectopic Bio

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I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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Lili, Pituitary Post-Op Update

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hi there…

i had the pituitary surgery.  They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1.  They consider that a cure.

it is a very painful recovery for me and i am documenting each day.

The headaches and pressure in my head were so awful and painful but have now on day 6 subsided.  They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12!  The nausea was bad too.  The cortisol withdrawal hasn’t been so horrible yet.  They have me on a taper program of each week taking less.

The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft.  He wanted a “home run”.  I asked after if he got the home run and he said yes.

The whole Mayo experience was strange.  You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent.  The endocrinologist is the only one who calls back personally but I guess that is a lot.  I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic.  Things just fell into place there.  As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning.  A one stop shop.  I was scared and there alone but got through it.

The next 3-12 months will be difficult.  I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr.  I just need to check myself and get off them as soon as I get these headaches under control.

Mary, I’d like to stay active on your site.  I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure.  Please let me know the best way I can do this and you may post this if you’d like.  Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.

I just know I am grateful to you and this site.

Lili

 

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