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Interview with Robyn Y (2ndtimecushie), Recurrent Pituitary Patient, June 15

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A Golden Oldie

Robyn was diagnosed with Cushing’s Disease in 2004 and had 2/3 of her pituitary removed.  This was after 8 years of going from doctor to doctor and thinking she was going to go crazy.

She writes: “Anyway, after my surgery in February of 2004 I had probably a good three years and then I slowly started feeling bad again.  I am now going through what I did 8yrs ago.  My endocrinologist doesn’t think that the Cushing’s is back because of my tests being borderline.  He told me that he thinks I am obese and I need to have stomach surgery.  I seriously cried for days and told him that I disagreed and I wasn’t going to give up…I need support in following through with the tests that I need to.  Like I said I have been putting them off because subconsiously I am so worried that they will tell me that I don’t have the Cushing’s back and I will have to live like this the rest of my life.  Tired of being so heavy and uncomfortably large, sweating to the point of dripping, aching all over and not having any desire or motivation to do anything.

I’m praying the tests come back showing that the tumor is back and they will go in and take the rest of the pituitary out.”

<!– Read Robyn’s complete bio –>

This interview was archived and available through  BlogTalkRadio, or through iTunes Podcasts

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Sue, Adrenal Bio

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A Golden Oldie

Hello again.

I haven’t visited this site for a long time. Two years ago a beautiful girl from the west coast of Florida found me on here. I thank God for her .Although we have never met, she is like a sister to me. We laugh and cry together every day. I plan on visiting her this month. I have had Cushings for approximatly fifteen years. I diagnosed myself with the help of a nurse friend of mine and a book.

I think my predominant emotion is anger. I know it is a rare disease, but good grief even some of the endos I have seen must have fallen alseep in class that day!! I’ve been through “you have the fat gene” to E.R. physicians thinking I am a pain pill addict. I watch my wieght…go up!! lol and I am in pain evry day. I have severe osteoporosis, frequent PID, walking pnuemonia,chronic bronchitis,mercer staff, hair growth, you name it.

Irritabvle bowek syndrome and my vision had deteriorated rapidly. I am 47 years this July and the psychological effects of Cushings have been the worst. You can put a bandade on woulnds that won’t heal, but there isn’t a pill that can take away all the depression and anxiety or mood swings. There isn’t enough Red Bull to not fall asleep after being up over 72 hours and finally there isn’t a doctor I really trust anymore.

I am headed to the National Instsitute of Health this month to undergo tests. I will be thier guinea pig for a week. I just had my hearing for Sociual Security Disability and that was hell. Life in America is so much easier when you have insurance. I hope that the NIH will recommend the surgery I need to get well again. I have a left adrenal tumor that is growing.

I am a Pastor and I pray every day and night to be healed. So far no luck!! lol Jesus will guide my surgeons hand..won’t he?

Sue was interviewed in the Cushings Help Radio Show on July 27 at 5:00 PM eastern.

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Andrea L, Pituitary Bio

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A Golden Oldie

I first noticed something abnormal about my health in the summer of 2009, at age 23. I suddenly developed severe acne when I had had clear skin since I was a teenager, and I noticed more hair on my face and body than I was used to. In retrospect I realize that I’d also had bouts of weight gain, a buffalo hump and excessive sweating during my adolescent years, but I didn’t think anything of it at the time.

Around the same time I noticed the acne and hair growth, I also started putting on weight. I’d been on the thicker side for my height since childhood, so I decided to join Weight Watchers. Even though I was hungry a lot of the time, I stuck to the plan religiously and lost about a half pound per week. It was slow, but I was moving in the right direction so I stuck with it. I had bouts of fatigue throughout the process, but I would just assume that I needed to tinker with my diet – more protein, less protein, more fruit, less fruit, whatever. I tried a lot of different things, always focusing on getting adequate nutrition, but never had the energy that my Weight Watchers buddies seemed to have.

About six months later I finally went to my mom’s endocrinologist when I was visiting my parents in Texas. I was concerned that the acne and hair growth meant I had PCOS. All those tests came back normal, so the doctor gave me a 24 hour UFC just in case. It came back elevated, and she said I ought to follow up with an endocrinologist in New York where I live.

My next menstrual period didn’t come until 4 months later, and then they stopped completely.

My new endocrinologist in New York ordered more tests (you all know the drill). Over the next six months or so the 24 hour UFCs kept coming back high, salivary cortisols were normal or high, and one dexamethasone suppression test was kind of ambiguous. The doctor said that my urine volume was really high and might be screwing up the results, so I retested after limiting my fluid intake. That UFC came back normal, so I was instructed to follow up in six months.

As if on cue, the months following my normal UFC were great. For some reason I finally felt like I was bursting with energy. Beyond that, I had lost weight and even landed my dream job. At the time I assumed that the energy was from finally finding the right balance in my diet. The acne and hair growth were still there, but as far as I was concerned it was nothing that couldn’t be solved with some tweezers and makeup. Later I noticed in photos that even though I had lost weight, my face was much rounder than it had been before.

The nightmare began in January of 2011. I started feeling more anxious than usual. I began to cut more and more things out of my schedule because I didn’t feel like I had the mental energy to handle my normal workload. I had to take a Benadryl most nights to sleep. I started suffering from regular constipation for the first time in my life. My appetite increased markedly; I kept feeling less and less satisfied with my normal diet. I gave in and started rapidly gaining weight again.

After a particularly stressful week in February, I asked my mother to stay with me in New York for a little while, admitting that I had been feeling out of sorts. I figured I’d take a week off from work and just do fun stuff and I would be right back to normal.

…Wrong.

The bouts of fatigue returned, this time so crushing that I didn’t even have the energy to make my own meals. I’ll never forget the day I attempted to go out for my morning jog, trying to convince myself that it was all “in my head,” and despite having plenty of cardiovascular and muscular strength, I could barely take a single step. I felt like the world had gotten bigger somehow, like I drank the shrinking potion from Alice in Wonderland.

At the same time, my appetite became so ravenous that I felt like I could gnaw my arm off 24/7. I also started feeling scatterbrained and having difficulty focusing. These were the beginnings of the cognitive symptoms that would prove to be the most debilitating of all.

My mother, god bless her eternally, suggested that the odd change in my mental state might have something to do with all those abnormal hormone levels from the prior year’s tests. I followed up with the endocrinologist again and had a very high 24 hour UFC. He ordered an MRI. My symptoms were getting worse, but my mom fatefully broke her foot and had to return to her home in Texas.

By the time March arrived I was so scatterbrained that I constantly felt drunk. Going to work was petrifying. My appetite was still insatiable.

Finally, the mood swings came. By “mood swings,” I don’t mean irritability. I mean that I became an ultra-ultra-rapidly cycling manic depressive. I would wake up at 3:30 in the morning giddy with energy, writing long, rambling e-mails to everyone I know, trying to go for a jog only to have to stop and dance to the music on my MP3 player in the middle of the Bronx. Then I would feel horrendously depressed mere hours later.

I could spend a lifetime attempting to describe the pain of bipolar depression. It is beyond despair. Take the icky feeling you might get with a cold or a flu and multiply it by a thousand. I was so distressed I felt like my brain was on fire. Like I had been poisoned. It would get so bad that I couldn’t speak. I vomited just from the discomfort. Once I went to the ER, desperate for relief. All my vitals were normal. They just let me ride it out, like I was having a bad drug trip. Later, I described these feelings to my roommate, who said she felt that exact feeling while going through narcotics withdrawal.

One of the most interesting aspects of this experience was that every time I got a migraine headache (which I’ve had periodically for most of my life), my depression would lift or I would get more manic. Note that if I had a choice, I would take a migraine every day of my life over the pain of severe depression.

I went to a psychiatrist, and much to my dismay, he told me I was not crazy. He gave me totally ineffective herbal mood-lifters and told me to go back to the endocrinologist. I started taking huge doses of caffeine in an attempt to take the edge off the low moods. It worked temporarily, but the feeling always returned. I ended up back in the ER after experiencing a lovely phenomenon called “sleep paralysis” (Google it) for two hours straight, which understandably gave me a panic attack. I was put on benzodiazepines, which prevented another panic attack but did nothing to make me more comfortable.

Some interminable time later, my endocrinologist called to inform me that I had a 5mm adenoma on my pituitary gland. I wept with relief and my family made immediate arrangements to take me to MD Anderson for surgery.

Maybe if I had read some of the bios on this site I would have anticipated what was to come. Cushing’s patients never have it that easy. In my scatter-brained, benzo-doped, manic-depressive stupor, I showed up at MD Anderson for…more tests. There, both a 24 hour UFC and dex/CRH test came back normal. A few things about the dex/CRH test were not administered as planned, but the in-house testing results combined with my still-normal bodyweight convinced MD Anderson that I did not have Cushing’s, and was simply a total nut case. They sent me on my way.

Finally I returned to my mom’s endocrinologist, the same woman who had had the foresight to give me my first 24 hour UFC. She ordered another round of tests and sent me to a wonderful psychiatrist who promised to do her best to make me feel better while we waited for a diagnosis. A litany of psychiatric medicines (mood stabilizers, sleeping pills, stimulants, antidepressants) would each work for a few days or a week and then wear off. Eventually the mood swings turned into a persistent, mind-numbing depression.

In retrospect, the benefit of having my mood fluctuate so violently earlier in my illness was that the depression didn’t have time to take hold of my thoughts. It was painful, yes, but I was able to fight the feelings of hopelessness and self-hatred with logic and positive self-talk. Later on I was not only completely miserable, but also came to believe that my misery would never end. I’m amazed I lived to tell the tale.

By midsummer I had a few more elevated 24 hour UFCs under my belt and had gained enough weight to look more “cushingoid.” This time I went to Methodist Hospital in Houston. The surgeon there agreed with my endocrinologists that I had pituitary Cushing’s, but disagreed that my MRI showed a defined adenoma. Again, Cushing’s patients never have it that easy. Luckily this surgeon was caring and proactive enough to order an IPSS and schedule me for surgery, though he warned me that it may not cure my depression. I asked for the surgeon to remove my entire pituitary gland in the event that he didn’t find a tumor.

August 23rd, 2011 was the day of my rebirth. I can attribute my euphoria in the week after the surgery to the strong pain meds I was on for the CSF drain, but by the time they were out of my system I was astounded to find that my mood and thinking were absolutely 100% normal. I can once again think, laugh, smile, sleep, taste, and enjoy the company of others. Within three weeks I had enough mental energy to resume working from home.

No tumor was found, so my entire gland was removed. No amount of hormone replacement in my future can dampen the joy of having my self back, permanently, with no fear of relapse. I’m not even fully recovered from surgery and I’m feeling better than I have in quite a long time. Even the constipation and acne are gone!

It’s disorienting and traumatic to have essentially lived with a temporary form of bipolar disorder, only to be cured of it as suddenly as it began. I fancied myself knowledgeable about mental illness before this, but I know now that you just do not fully understand it until you feel it first-hand. Luckily it all feels like a distant memory now. There must be a natural sort of psychological distancing that occurs with a traumatic experience like that.

As I posted on the forums shortly after my surgery, for those of you who may have given up hope, keep fighting! Take it from me that there are better times ahead.

Note: Email Andrea or add comments to this bio below.

Andrea was interviewed on the BlogTalkRadio Cushing’s Program on Wednesday, October 19, 2011

Listen live at http://www.blogtalkradio.com/cushingshelp/2011/10/19/andrea-l-pituitary-success-story

This interview is archived at http://www.blogtalkradio.com/CushingsHelp and iTunes podcasts at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

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Leiana, Adrenal Bio

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Hello and Good Morning!!  First i want to say that this is a great website..very informative and hopefully I can find some help here.

I was diagnosed with autoimmune adrenal insuffiency back in 2009 and put on 30mg of Cortef for the rest of my life. He said my cortisol levels were below normal of -1.    Then in spring of 2010 this endocrinologist raised it to 60 mg cause i was having dizzy spells.  I got suspious of this high dosage and told my primary dr and he sent me to an university hosp. and another endo. The new endo said that the cortiso levels were normal and that the first dr was wrong.  Now since 2010 the new dr has been trying to wean me off the steroids with no success.  I am now on only 15 mg a day.

Here are my lab results from the first dr.  Hopefully someone here can tell me if they think they are normal or not.

This is a acth stim test::  july 2009

Cortisol am 10:45=  11.6

cortisol am  11:15=  25.0

cortisol am   11:45= 9.8

cortisol am   12:15= 26.9

acth 10:15    8

acth  10:45  6

acth  11:15  35

acth  11:45  28

hgh  10:15  15.6

hgh  10:45   4.9

hgh  11;15  3.2

hgh  11;45  2.3

hgh  12;15  4.9

somatomedin c was 117.

fsh 99.6

tsh 1.34

t4 free 1.10

As I said the second dr has been trying to wean me off the steroids.  i did have a 3.9 andenoma on the right adrenal gland removed in Sept 2010 and waiting for the left adrenal gland to kick in which it has not according to the last acth test done last December 2011 with a cortisol level of .5 which is suboptimal i was told.  This dr. also said if I went off the steroids now I would die!!!!!!!!!!!!!!!!!!!.   I dont know who to beleive.

I am extremely skinny and bony and eat around 3000 to 4000 calories a day.  I was referred to Mary O a year ago thru Power-Surge forums and wrote her and never heard a reply.  I lost 30 pounds without trying and went froma size 12 to a size 4,  bmi is 15.  tried to sue the first dr but was told it was over the statues of limitations and tried for an extension of this but no lawyer will touch it cause they said the judges would throw it out of court.  My arms and legs are like twigs and bones are sticking out…trying to hang on.  Please someone help.  Thank you

 

Leiana was interviewed in our Podcast Series.  Listen here

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Dr. Dori, Pituitary Bio

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The author, Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children. She was diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001.  This Golden Oldie was last updated 06/19/2008.

~~~

December 28, 2002

Dr. Dori Middleman

HOW TO HAVE FUN WITH A BRAIN TUMOR

A Pituitary Party with a pituitary-shaped cake, complete with tumor of a different-colored icing, a pituitary hunt for the kids, a raffle to benefit the Wellness Community (a cancer support group), and a contest for the most creative object to be inserted inside my head in place of the removed pituitary tumor were ways in which I distracted myself from the terror of brain surgery. I hired a story-teller, who wrote pituitary stories. I bought the game, “Cranium”, to give as prizes for the winner of the replacement-object contest, and my caterer created pituitary-theme foods: pituitary pasta, cerebral cucumbers, and had a cauliflower simulating a brain decorating the table along with a scarecrow who displayed the sign, “If I only had a brain…”

My pituitary party invitation read:

As you may or may not know, I have been diagnosed with a pituitary adenoma, a small brain tumor, and am having surgery on April 3rd. I have decided that one thing you can do for me is help me have fun with my brain tumor. Traditionally, brain tumors have been viewed as undesirable, somewhat dreaded, and even potentially life-threatening. They’ve gotten a bum rap, in my opinion. I think they give life a purpose (survival with a few brains intact) and give their bearers something to talk about, but better yet, laugh about.

Dan Gottlieb, a Philadelphia Inquirer columnist, in his April Fool’s column on the importance of not taking oneself too seriously, gave me and my party a notable mention, resulting in all of Philadelphia knowing about my surgery and many expressions of support and concern.
Indeed, contemplating death and disease is not the way I most enjoy spending my time, although I did a fair amount of that too. But throughout my illness and recovery, I have attempted to make the most of the cards I have been dealt.

Other health-promoting strategies I have used included:

regular mass e-mailings to my close friends to keep them apprised of how I was doing so they could best offer support;
contacting everyone I could think of for recommendations and information on doctors
finding and conversing with fellow patients on-line in the chatroom for people with my illness, Cushing’s Disease
using hypnosis, yoga, exercise, acupuncture, massage, Gestalt, and energy-work as adjuncts to my medical treatment
re-entering and using psychotherapy to support me emotionally through the process of illness and the stresses of medical treatment (In Gestalt therapy, I spoke to my tumor and my pituitary and came to understand their function in my life: I had a hypomanic pituitary mimicking my own sometimes hyper-functioning mode of living.)
joking with people as much as possible about brain tumors to facilitate comfort of myself and people providing my care from hospital registration personnel to my brain surgeon
carrying with me at all times the small objects people offered to me as brain-tissue replacement
wearing a donut-like pendant covered by a symbol of a healer as a reminder of my brain with a hole in the middle healing

Unfortunately, my surgery was unsuccessful, and I faced a decision between a second surgery or radiation treatment. I did not find this funny. In fact, I was pretty demoralized and said so in an email to friends and colleagues, again inviting humor. One of my colleagues placed a request to the entire international mailing list of my Gestalt therapy colleagues on my behalf, saying she had “an ill friend in need of humor”. In came jokes from around the world – about fifty pages of them – which I read to my driver enroute to my gamma knife radiation treatment in another state. We laughed our way there and back!

Life is what it is. We get what we get. And we might as well enjoy it!

The author, Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children. She was diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001.

Listen Interview on a Philadelphia-area public radio talkshow, Voices in the Family, about Cushing’s Disease and how to make meaning out of illness and adversity.
Read Dr. Dori Middleman’s article HOW TO HAVE FUN WITH A BRAIN TUMOR.
Read Dr. Dori Middleman’s article PSYCHIATRIC ISSUES WITH CUSHING’S DISEASE.
Read “DrDori”, Dr. Dori Middleman’s First Guest Chat, April 14, 2004.


DrDori answered questions in an online Voice Chat, June 12, 2008, 7:30PM eastern. Archives aree available.

Listen to CushingsHelp on internet talk radio

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