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Faith’s Husband, Pituitary Bio

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My husband has Cushings, has had 2 pit surgeries, radation, and is still not any better.

We go to MGH Boston, love our endocrinologist, just wish we would see progress.

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Christine G, Pituitary Bio

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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.

 

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Jamie, Pituitary Bio

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golden-oldie

I was diagnosed with Cushing’s in 2003 .  I was 34 years old, a single Mom of an 8 year old daughter and a Ceritified Nurse-Midwife.  I had a pituitary microadenoma and it was removed via TSA nov, 2003.  I had remission until 2006.

I knew I was getting sick again but my labs were inconclusive for many months.  I had reduced my work hours and still too fatigued to work safely.

In August of 2006 I went to my primary care doctor and told her I was also having a great deal of trouble with my memory such as remembering medications that I gave all the time and even remembering how to look them up.  I stopped working that day.

I had 1/2 pituitary removed in November 2006 with no remisssion.  I researched options and got other opinions NIH, and Mass General and everyone agreed on radiation…the BIG dose ond day kind.  Remission achieved a few months later.

I am still in remission currently, but not who I used to be.  Still requiring naps a couple of times a day and to bed early .  I have a lot of trouble concentrating, so I can’t drive more than 30 minutes or as my friend says, “my inner canine comes out” and I start staring out the window…kind of forgetting i’m driving.  It’s funny but not really.  what a wild ride this has been.

It is easy to feel like the only one with this disease, I’m glad you all are here to make it a friendlier place.

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Gina M, Ectopic Bio

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I was diagnosed with Cushing Syndrome in June 1999.  At that time my urine cotisol level was 342.

Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.

I had pituitary surgery at Mass General because my state didn’t do that type of surgery.  After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.

When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.

In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.

I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!

Elisabeth G (Elisabeth), Pituitary Bio

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I am a 66-year old retired French teacher and artist.

Last fall began Cushing’s screening, a year after hip replacement due to AVN.  Referred to Dr. Brooke Swearingen at Mass General by Maine Endocrinologist in December 2011, Surgery Feb 2, 2012 to remove a 3mm pituitary adenoma, excellent post-op, no pain, walked out of hospital after one overnight.

Recovery has been gradual but encouraging.  Lost 20 lbs but would like to lose more…

I would love to compare notes with other Cushing’s patients to know what to expect in recovery.

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