Home

Michelle (Michelle), Cyclical Cushing’s Bio

Leave a comment

I am an avid runner run about 15 miles a day then in April I gained 50 lbs my worst nightmare. I gained 50 lbs in two lbs with no change in activity or eating. I was ashamed and embarrassed I didn’t want anyone to see me my friends or family.

Then I broke out in hives all over my body I went to urgent care. They saw a large hump on the back of my neck thought I had cushings. I saw 10 different doctors in la. One passed me off to another.

It was a nightmare then I went to Mayo Clinic where she thought I had cushings from an external source ( September ) she told me to just wait and everything would go back to normal. Even though there was no outside steroid source.

Then I wasn’t getting better in the end of October I went to two doctors in nyc, who didn’t do anything.

Finally I found an artical on cyclical cushings and sent it to my doctor at Mayo Clinic. She agreed with me and told me to come in. My cortisol was finally high now and she’s running other tests I hope I’m fixed soon.

I’m so sad and depressed.

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

Stephanie M (Stephanie), Pituitary Bio

1 Comment

 

I found out I had a tumor on my pituitary gland in Nov 15 quite by accident, as you do!

I’d had an ovarian cyst and endometriosis taken out quite easily and then a horrific back surgery to take out a cyst on my lumbar spine. I was ( and am still) dealing with chronic severe nerve pain and numbness in my left leg and foot.

I’d been told I needed to watch what I eat and exercise even though I did both and still I gained 30 lbs. An ENT found the tumor on an MRI after I had a lymph node practically explode on my neck! Ugh.

We were getting ready to relocate to AK from TN and still hadn’t been diagnosed. I had to travel to Seattle from Fairbanks for all my appts!

Long story short, I had a macroadenoma on my pituitary gland. By the time I had my first surgery, I could barely think rationally anymore, I was in terrible pain, I had very little muscle strength left, and I’d gained a total of 70 lbs. I can’t remember much of that time. I had negligent pms and great but distant specialists.

I had to go back for a second surgery then have radiosurgery w/ a gammaknife in the Spring of 2017. I took mifepristone for too long because my Seattle endocrinologist moved to AZ. It worked well then it was making me sick. I couldn’t eat and lost 50 lbs. I changed all my doctors and am now making the uphill climb. I’ve gained 10 lbs back and my progress with muscle strength is so sloooow. I’m thinking much clearer now.

Because of this experience, I have learned to be an advocate for myself in the medical field, I am a cynic about the human race still but appreciate people and the world a lot more. I have learned to be patient because my life has slowed down.

I am the only Cushing’s patient in Fairbanks I think. It’s hard because I’m in remission but it’s just stage 3 after diagnosing then curing. Now it’s recuperating after being ravaged by the disease. I have no idea how blogs work. I don’t know where to start w/ regards to mining all the info. Thanks for having this site. I was going to make my own if I hadn’t found it!

Stephanie’s doctor

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

Steve, Ectopic Bio

Leave a comment

I am recovering Ectopic Cushing survivor, I am 52 years old, I originally got sick when I was 22 it was 1987, I went un diagnosed for 12 years. I had every symptom there is with Cushings from the crazy weight gain to blood pressure being at stroke levels for the 12 years and terrible vision issue that I still struggle with today.

I had 2 surgeries, first I had the Pituitary surgery which left me on deaths door, miss diagnosis of Pituitary when it actually was ectopic with a nickle size tumor in my right lung between my upper and middle lobes. they removed all but a potion of my upper lobe.

I have struggled with vision issues ever since as well as depression, terrible fatigue and all of the other issues that come with having Cushings!

 

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

Danielle G, Pituitary Bio

Leave a comment

The pituitary gland

 

During pregnancy it’s expected for women to gain weight and sometimes struggle to lose it after giving birth.

Danielle Gselmann felt her health dramatically deteriorate five years ago, soon after she found out she was pregnant.

The Gold Coast mother had suddenly gained more than 20kg, found herself losing hair, constantly breaking bones and struggling to sleep.

Making matters worse, the young mother became severely depressed and noticed an unusual-looking ‘hump’ on her back.

Danielle went with her personal trainer husband Dean to get checked out and doctors assured her she was fine, claiming the symptoms were related to her pregnancy.

However, Dean was not convinced of the diagnosis because Danielle continued to eat healthy and work out but was still feeling terrible.

After piecing her symptoms together and doing extensive research, Dean believed Danielle was suffering from Cushing’s disease.

They went to a specialist to confirm Dean’s hunch and their worst fears were realised.

According to the Healthline, Cushing’s disease is caused by a tumour on the pituitary gland in the brain. This tumour then produces an abnormally high level of the hormone cortisol.

It is an extremely rare disease, affecting 10 to 15 people per million each year.

Speaking to Sunshine Coast Daily, Danielle said the disease affected her everyday life and took a dramatic toll on her family, causing her to miss out on watching her son grow.

‘Physically my body broke down…mentally I went numb,’ she said.

‘It affected everything…I missed so many moments because I can’t remember any of it’.

On July 19 Danielle had brain surgery and had the non-cancerous tumour successfully removed.

However, it will take two years for her pituitary gland to function on its own once again, and is warned she may continue to experience the harsh symptoms.

She was prescribed steroids to help manage the dramatic change her body has to cope with low cortisol levels, the publication reported.

The Gselmann’s now hope to raise awareness of the rare disease.

They have also launched a GoFundMe page requesting support for the family to look after Danielle as she recovers.

From https://en.brinkwire.com/news/gold-coast-mother-diagnosed-with-cushings-disease/

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

Stuart M, Parent of a Teenager

2 Comments

 

Hi All. I’m a parent, registering unfortunately out of pure frustration over poor progress made here in Brisbane, Australia on my 15 year old daughter’s apparent two diagnoses – Cushing’s Syndrome and Hashimoto’s Thyroiditis.

This is hell for her as a teenager, as the chronic weight gain plus all the other acute symptoms ruin her life, and chip away at her once-immense self-esteem. I hope some success stories here and any of the beautifully helpful souls out there might point us in dark corners we haven’t been into yet.

Should I ever get even one reply from anybody out there, it will be adored and immensely appreciated – my devoted thanks in advance.

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

J Stone (J Stone), Pituitary Bio

1 Comment

 

Hi. I’ve been diagnosed with Cushings Disease since 2010.

My journey started in 2009: weight gain, headaches,high blood pressure, mood changes, insomnia every symptom except stretch marks.

I was in nursing school at the time, worked full time as well. I just started to feel “not right” I knew something was wrong, even mentioned all my symptoms to my nursing instructor and she said “ do you have Cushings?” Those words changed my life.

I started researching Everthing! I became obsessed. I started to visit my GP. The answer “you’re old and fat and need to diet” I was 42. Then it became “you’re premenopausal and fat” eat less, exercise more. I had been eating very well and was as active as I could be. He kept telling me the same thing for the 6months I kept going back to the MD office.

After all my research and reading I became convinced Cushings is what I possibly could have. I went to his office, sat down and told him I wasn’t leaving until I had an order for a 24 hr urine and serum cortisol. He laughed but gave me an order. Took the tests and what do you know,high levels. He promptly referred me to an Endo.

I will never forget the words she said to me on my first visit “ I’m very afraid for you” as all my tests were very high. She referred me to a specialist in Cushings which is in an other state. I traveled to see her and she confirmed and diagnosed me with Cushings disease. And then it became a whirlwind of tests and surgery. She told me I had a very advanced case and probably had Cushings for at least 5 years before seeing her.

It is now 2010, a year after I had first started to see my GP. I had my first Pituitary surgery in Nov. 2010. They removed the tumor and a bit of my pituitary. I recovered 2011. It took a very long time for my adrenal glands to wake up. I was on hydrocortisone for over a year before I @could taper off completely. I was back at work, loosing weight, getting my strength back and feeling hopeful this was the end.

Not so lucky. I had about 2 years of doing pretty good, but in 2014 I started to have all the signs again. Weight gain, pain, insomnia. My lab work had started to show all the Cushings signs again. MRI’s showed tumors, more of them are back. I tried the drugs available, all of them, none worked.

I had my second surgery June 2015. After surgery I was told it was unsuccessful plus I had even more tumors. One which is on my carotid artery. So I continued on trying the meds available, still no improvement. 2017: my symptoms getting worse, feeling terrible. Gaining weight. My tolerance to activity has greatly decreased and the headaches are constant. All the symptoms are back. I have been told I can not have any more pituitary surgeries because the tumor is on the carotid. I have altered my work, I now can only do a desk job and not work on the floor taking care of patients as it is too difficult for me.

I now have terrible high blood pressure, increased diabetes, osteoporosis with significant bone loss, weight gain, headaches constantly, insomnia etc. so the next step, I am seeing my provider who I have to travel across state lines to see and plan on discussing a BLA as I feel this is my last option to provide me relief and move on with life.

I will have to see what happens.

Cheers and thanks for reading.

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

Christine G, Pituitary Bio

2 Comments

It took approximately 6 years for me to be diagnosed with Cushing’s Disease. I have had many unrelated illnesses up to that point, Congestive Heart Failure, FMD, Gallbladder Removed, problems with vision, high blood pressure, weight gain, problems with balance and more.

No doctor could figure out why the weight gain only in my belly. All were prescribing different diets.

My husband and I were on vacation for a month in Florida every morning and afternoon I would walk on the beach 3 miles each time and my belly kept getting bigger???? My husband saw an article on excessive cortisol and how it was a stress hormone and that excessive cortisol expanded your belly!

My daughter had a friend who was an endocrinologist, I made an appointment to see him when we got home. At first sight the doctor said I do not believe you have “it” but to appease you I will test you. To this day I do not believe he would have tested me if he was not friends with my daughter. I did not have any of the typical signs. Non of us is textbook, we are all individuals.

To the doctors surprise testing came back positive for Cushing’s Disease the doctor said that he would have to send you to someone more familiar with Cushing’s and he sent me to Mass General. I met with a Dr. Tritos who once again said I did not have the typical signs and I was retested. Yup it was Cushing’s. I met with a nurosurgeon at Mass General, Dr. Sweringen, who had extensive experience in Cushing’s surgeries.

My insurance company denied my out of network coverage. I saw a few doctor’s locally and did not feel comfortable with any local surgeons because of the lack of surgical experience with Cushing’s Disease. I began my battle with the insurance to have the out of network covered. I was first rejected by the insurance company, I then appealed with Maximus (second step in process) and was rejected. During this time my health was deteriorating, I had double vision and could no longer drive, I needed to hold onto someone to walk because I had become so unsteady. My family was worried because they had read that the longer you waited for surgery chances were less likely for a full recovery. My daughter gave me the money for the surgery which I had at Mass General on November 16, 2016 by Dr. Sweringen, who is fantastic! I had successful Pit surgery.

After surgery I continued my pursuit in getting the money back. I went to the next level, the applet judge……This time I won, with the help of my local endocrinologist, Dr. Busch and documented proof of Dr. Sweringens exceptional expertise in Pituitary Surgery.

Now almost 10 months later, I am very surprised that I still have muscle weakness and joint pain. When I mention this to doctors they do not believe it is Cushing’s related, even though when you go to the Cushing’s Facebook support group people mention this. I am wondering how many others have this problem 10 months post op. I still have trouble getting out of a chair.
What is so sad you are not told about the post op obstacles you will face.

I think that all of us facing this disease have to give ourselves credit for the strength we have and have to continue having to battle this disease, and to appreciate our support of family and friends.

 

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

Older Entries

%d bloggers like this: