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Steve, Pituitary Bio

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golden-oldie

 

I am a 43 year old man from South Carolina who has been a “big boy” most of my adult life and have been pretty healthy until early 2003 when i started noticing marked weakness in my legs. At the time I was on a diet and thought I was just deficient in something and started trying all kinds of supplements but nothing helped. I was kinda checking my bp here and there and it was very high so I decided to go to my gp because I was due for a physical anyway. He saw me and I told him about my leg and arm muscle weakness and he started asking lots more questions about my moods, vision, looked at my stretch marks and felt my noticable hump and said that it looks like cushings but probably isn’t because it’s so rare. He sent me to an endo “just in case, to rule it out”.

I have since found out how blessed I am to have had this gp and to be referred on the 1st visit. My endo agreed and started lots of tests (I never gave so much blood or peed so much in my life!) and even though after a CT and MRI they couldn’t see any tumors, he referred me to Drs. Vance and Laws at UVA Medical Ctr. who are wonderful! After an IPSS I was diagnosed and it was caused by a tumor on the pituitary.

I had transphenoidal surgery on Feb. 7, 2004 and after no change in my cort levels in 4 days they decided to go back in and operate on the other side which resulted in complete removal of the pitiutary. I never did “crash” so they sent me home saying I definitely would in a few days. It is now March 2005 and I am still waiting to crash. I never had to take steroids due to my levels being near normal and although I am due for another check-up in a month, I feel pretty good, having gained 90% of my strength back along with most other symptoms getting better. The wierd thing is that Dr Vance thinks that I am in remission from cushings but I am a rare case (I guess that makes me rare among the rare!). One year post-op and I am only on bp meds and thyroid replacement and testosterone replacement, that’s all.

I am a lurker here and was during my darkest days and appreciate all the help this site has given.

The recurrence of this disease seems to be high, among posters here anyway, but I am optimistic that I am through with cushings for good and just have to deal with hormone replacement.

 

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Laura (Loves2Cruise), Adrenal Bio

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The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

I was diagnosed with Cushings over 14 years ago and really thought it was over and done with. After seeing several doctors while starting in high school and into college, primarily to explain why my cycle had completely stopped, I was given various responses from the typical, “oh, it’s probably just stress” to “let’s just put her on birth control and it will start right back up.” And while the latter may have been true, it certainly didn’t explain the weight gain round my midsection, especially when I was eating so little while in college because I just couldn’t figure out why my pants wouldn’t fit anymore. It also didn’t explain the “buffalo hump” at the base of my neck, or why my hair seemed to be falling out. Or why my blood pressure was high all the time. Or why I had constant headaches. So only after my mom refused to accept “stress” as an answer, she turned to Dr. Google, and started looking up my symptoms. She finally convinced a doctor to test my cortisol levels, which were off the charts.

Luckily, I went to college in Milwaukee, and saw Dr. Findling who immediately diagnosed me with Cushings. After dealing with this for several years, Dr. Findiling diagnosed the disease, located the tumor (left adrenal gland), had it removed, and was on my way to recovery in a matter of a few months. By the time I returned to college in the fall, after having the turmor removed over spring break, people did not even recognize me, my appearance had changed so drastically.

Well, fast forward to today, and I am wondering if the one adrenal gland could have anything to do with what my husband and I have dealt with for the past 2 years. We conceived 2 children easily with no problems who were born in 2006 and 2009. When we tried to have baby #3, two years ago, something was different. We practice natural family planning, so I was very aware of my cycles. But after a surgery and terrible cold, things changed. No longer could we get pregant. I saw several different doctors who all said again, “it’s stress” or “there’s nothing wrong with you.” One even gave me a brochure on how to have a baby. Really! Anyway, I started myself on an “adrenal fatigue” diet last fall, started taking Maca root (because I read it was good for adrenal health), and we got pregnant last November after trying for over a year and a half.

Unforunately, at a 13 week ultrasound, we discovered that the baby stopped growing at 9 weeks. We figured we were just a statistic, and 1 in 3 pregnancies ends in miscarriage. We did not have any testing done because we figured we were just one of the odds. We conceived again in May, only to find out at 12 weeks that our little peanut stopped growing at 11 weeks. We opted for testing this time and are awaiting the results to determine whether or not there was a chromosomal abnormality. Although I am sure it happens, to lose 2 babies, after confirming heartbeats multiple times, seeing it move around, and find out it has passed is devestating. I won’t forgive myself if this happens a third time without ruling out the role my one adrenal gland may have played in this.

One doctor did test my thyroid during our efforts to get pregnant, and my RT3 was very high, especially in relation to my T3. He just put me on T3 and said I was “stressed.” I am now wondering if yes, I was stressed, but my one remaining adrenal could not handle the necessary work required to sustain a pregnancy. Or affected our efforts to even conceive. I have read (though don’t completely understand) the relationship between the RT3 and adrenal glands. I am going to return to Milwaukee to have my remaining gland tested to see if it is indeed working at an optimal level.

I guess my point in joining this board is to not only share my story with Cushings, but also to see how patients have fared after the Cushings was resolved. Has anyone had any long-term affects from only having one adrenal glad? Specifically as it relates to fertility? Curious to hear from others who have gone through this experience. I know there are not many of us. I can’t tell you how many times I have heard, “wow. I have never met a cushings patient before” from various doctors. But I am glad to find others who have shared this experience.

 

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Lavane V (lvowell), Pituitary Bio

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The pituitary gland

The pituitary gland

I was diagnosed with Cushing’s Disease in September 2012.  I started my search for a diagnosis back in March.

So here is how my story goes… in January of 2012, I decided that i was going to change my diet and exercise.  I had weight to lose from a previous pregnancy.  I began working with a nutrionist and personal trainer.  I spent a lot of time working out and logging everything that went into my mouth.  I even tracked my water intake. It became very obvious that for a hard as I was working that something was wrong.  i was gaining weight instead of losing.  I was also feeling very run down.  I had also started noticing that I did not have very many patience for much of anything and I felt very uptight about silly stuff.  I decided to go have my hormones checked.

At first the doctor told me that I was extremely deficiet on vitamin D and needed to drink a lot more water.  He said we need to run more tests.  He did a salivary test and some bloodwork to check my corisol levels.  On my follow up with him he said that i had very high cortisol levels and wanted to run more test.  He then went on vacation for a few weeks.  I was unable to get answers from his nurse and then he was so behind when he came back that i could never get an appointment.

I started researching on the interenet about high cortisol levels.  Everything that I was reading sounded like me.  Weight gain (i had gained 100 lb), exhaustion, stretch marks, blurred vision, high blood pressure, water retention, etc.  I found another endocrinologist and made an appointment.  I told him all my symptoms and what I felt was wrong with me.  He asked me what i wanted him to do.  I suggested some of the tests that  I had read about because I thought i might have cushings and he said, “ok, let’s get started but, cushings is very rare and I doubt that is what is going on”.

After running blood work, 24 urine test, plus many more test, he told me that I had Cushing’s Syndrome.  He indicated that this was very rare and that he had not seen but one case before.  He ordered an MRI.  The radiologist that read my MRI said that he did not see a tumor.  However, he did say that he saw “sinus disease”.  Now I have never hear of that so i questioned it.  I was told that I would need to go to a ENT doctor for learn more about that.

The endo doc wanted to proceed with the IPSS test.  I keep studying on the interenet about the disease and all the testing.  I even watched a few pituitary surgeries.  I just felt like I need to know everything possible besides, I could not sleep so this was a great way to spend hours.   I also kept reading all that I could on this site as well. I met with a local neurosurgeon and he scheduled the IPSS test.  I asked him about how we would proceed if my test results showed positive for a pit tumor. I was basically told since no tumor was seen in my MRI that the IPSS test would help them to decided which side of my pit they would take.  I was totally not comfortable with just losing part of my master gland.  I kept my scheduled test but started to research experts in cushing’s.  Then I researched which were covered by my insurance.

In the meantime, I kept the appointment for the IPSS since I didnt want to lose any time.  I checked into the hospital and got prepped for my test only to have the doctor come in to tell me that we would not be doing the procedure because the company that made the medications used for testing no longer was making the mediation.  Now then, how do you not know this before you prep someone for the procedure?!?!  I told the doctor that there were other hospital that were treating cushing patients and were performing this test.  I had been reading about them on the boards.  He told me that there was not anyone in the US that had the meds.  That was when I really knew that I was going to have to leave my state to get treatment.

I called my endo and explained what had happend and asked for a referral to MD Anderson in Houston, TX.  I also went online and did a self referral.  I just kept following up with them.  They have a pituitary tumor board that reviews cases.  My case was approved and I had my first appointment in Sept 2011.  I spent on day running tests, having an MRI and meeting with the a new endo.

Within 48 hours, he confirmed that I did have cushing’s disease and showed me the tumor on my pituitary.  In November 2011, I underwent transphenoidal pit surgery.  An 8mm tumor was removed.  There was some concern because the tumor was right up against my cavernous sinus cavity.  This is where your carotid artery is and the surgeon did not want to get close to this artery.

Unfortunalely, I did not experince a “crash” after surgery.  My levels did indicate they were in the normal range so the doctors sent me home with a perscription of hydrocortisone.

English: Cavernous sinus

English: Cavernous sinus (Photo credit: Wikipedia)

for me.  He is going to confer with my endocrinologist and then I will go from there.

Marian U (MaidM), Adrenal Bio

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HI!

I had Cushings symptoms for about 20 years (I am 43) before I finally had surgery at NIH on August 29, 2012.  Before 2 years ago, I had never even heard of Cushings.  Without the aid of a very perseptive medical accupuncturist, I would probably still be suffering today.   Perhaps, if I had heard about it sooner, I wouldn’t have suffered for so many years.  My goal is to help as many people as possible in battling this devastating disease.

I am so happy that I have a new chance at a real life! Feel free to contract me.  Below is a piece I wrote before surgery and my stats.

🙂 Marian

————————————-

My Experience with Cushing’s Syndrome

The changes came about gradually.  So gradually, that it is very difficult to pin-point exactly when the overall change became larger than the sum of individual changes and thus was something that was difficult to ignore. For my whole life, I was “Marian” and then one day, I was someone else.  I had become someone unrecognizable: the “Not Marian.”

One of my favorite books, “The Tipping Point,” by Malcolm Gladwell, expands on the premise that little changes make a huge difference.  Individually, the changes I experienced were easily explained.  I was tired. I had nighttime hot flashes.  I gained weight. I was moody and forgetful.  My sight was blurry.  I often typed or said the wrong word. I couldn’t sleep. I couldn’t remove my rings without soaping up my finger first.  One day, I forgot how to roll down my car windows.  I experienced moments of panic where I was driving and couldn’t remember what road I was on or where I was going. When I mentioned any or all of these symptoms in a group of women over forty, I heard a cavalcade of similar stories, usually expanding into an animated discussion centering on menopause and aging.

I also noticed that I stopped getting compliments.  People, except my amazingly supportive husband, just didn’t say that I looked nice or pretty anymore.  I tried not to be vain; I thought that I probably had just reached the point where I aged enough that I no longer was going to get the attention that I used to get.  I had “hit” the proverbial “wall.”

It is easy to look in a mirror and only see a stylized version of yourself.  But, photos are more precise.  For some time, I had noticed something “off” in the photos that were sometimes posted of me on-line.   They just didn’t look like me anymore.  I untagged myself and brushed them off as bad photos with only the vague realization that the “Marian” I thought I was, was no longer me.

My epiphany came in the form of the photos on my work identification cards, taken about three years apart.  Not only do I look like I have aged about ten years — I also look completely different.  My face is much fuller, my features are distorted, my eyes are sunken, my hair is stringy, and my skin is sallow.  I look like a bad photo copy of my former self.

Now, I realize that how I look is a small part of who I am as a person.  However, it is also the part of me that everyone sees first.  I remember being in the dressing room at Target and catching a glimpse of the “Not Marian” in the mirror.  I was astonished at my reflection and cried.

A friend suggested that I just realize that this “Not Marian” is who I am now.  I don’t think that this bad advice; it is just advice that is easy to say, but difficult to follow.  I often compare my sense of futility regarding my desperate attempts to become “Marian” again to Hercules’s labor of cleaning the Aegean Stables.  I exercised four or so times a week.  I went to a diet doctor.  I ate under 1200 calories a day.  I bought new clothes.  I got my nails done.  Despite these efforts, I only saw minor improvements in the way I looked and felt.  I still felt as though I was always wearing a rubber suit over my skin that covered my former self.

In many ways, the diagnosis of Cushing Syndrome was a relief.  Finally, there was an explanation for the way that I felt and, though serious, Cushing’s is generally a completely curable disease.   But, knowing I have Cushing’s presents another problem, when is it appropriate to tell peop

My initial inclination was to tell everyone.   I wanted to explain the difference between the “Marian” you remember and the “Not Marian” that you see now is a result of this rare disease I have.   “It’s not really me!  It’s the Cushing’s.”  I tried it a couple of times with mixed results.

Mostly, people said that they had not noticed a significant change in the way I looked or behaved.  My closer friends were more tolerant, expressed concern, and asked questions.  The reality is that nothing (except maybe vacation recaps) is more uninteresting in light conversation than talking about illnesses and ailments.  And though it was significant to me, the changes were not readily observable.  So, I will try not to talk about it.

I know that my upcoming surgery is not a panacea, though it is nearly impossible not to view it as such.  I have scrolled through hundreds of websites and blogs looking at photos and reading synopses of people before and after treatment.  I have connected with someone who was successfully treated for a Cushing’s syndrome through Cushing’s Support and Research Foundation.  Ultimately, my hope is that the loss of me is only temporary and that through successful treatment of the disease; I can begin to feel like “Marian” again.

STATS

July 2010: MRI at Kaiser showing a pituitary adenoma. High 24 Hour cortisol. Low DHEA.  Low ACTH. Referred to NIH.

Late July 2010:  CT at Kaiser showed “suspicious” tumor on left adrenal. (High HU, e.g. cancer)

Sep 2010: NIH testing.

Nov 2010:  NIH re-read the results of CT and MRI. NO pituitary adenoma and BENIGN tumor on left adrenal.

Dec 2010 – April 2011:  Unable to replicate high cortisol test at NIH. Diagnosed as pseudo Cushings due to stress. Yearly follow up recommended.

April 2012:  Follow up testing at NIH.  Cortisol is high.  CT of adrenal tumor is stable.

June 2012.  Second cortisol at NIH is high.  Diagnosis cyclical Cushings.  Will not operate.  Note that I do not look like clinical Cushings, so that was part of the problem.

July 2012: Bone density loss of 25% in three years confirmed through Kaiser.  I happened to luckily have had a previous bone scan so that they could compare.  The current bone density scan wouldn’t have been enough because I didn’t have osteoporosis yet.

Aug 6, 2012: Referred for surgery on Aug 27.

Aug 26, 2012: Enter NIH.  Surgery postponed but I can’t leave because of the testing!

Aug 29, 2012.  Surgery!  The surgery itself was easy.

Sep 2, 2012:  Left NIH

Returned to work half days Sept 4 and full time Sep 10.

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