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                                                    1998 April

Following is a summary of just some of the comments and statistics gathered in the survey.  If you have any questions, or would like to share your comments, you are welcome to email me at ToMajestic or leave them in the guestbook.

I contacted people from postings on message boards at various sites. I also left messages requesting people to contact me if they would like to participate.  I hoped I would get 25 people to reply. In a very short period of time, hundreds of letters arrived, and 100 people were included in the survey.  Each letter that arrived taught me a little more about my pituitary disorder. At many times, I had lots of tears...it was during this time, I realized that I was not alone in my set of fears and frustrations. I thought what was happening to me had only happened to me....and then I met all of you. We are in this together, and for me, there is comfort in that.

 "Somehow, everything is gonna be okay!"

This page contains the "short version" of the survey. If you would like a complete version, just click on the link that says "Entire Survey".  Load your printer with paper, because there is a ton of information from 100 pit pats that had a lot to share!!!

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The Entire Survey              

The following is just a sample of how "we" feel and what"we" have experienced with our Pituitary Tumors...

Most people participating in the survey have Prolactinoma (90% of the participants) There were also participants with Cushings Disease, Acromegaly and other Pituitary Diseases.

Section 1:  Weight Changes

Participation by Gender:

Number of Participants: 100

Number of Females: 81

Number of Males: 19                                                            

What Percent of the Participants were Male? 19%

What Percent of the Participants were Female? 81%                

What is the average age of the Participants? 38 years

Age of the Youngest participant: 8 years

Age of the Eldest participant: 61 years

MEDICATIONS PARTICIPANTS TAKE:    

Parlodel (Bromocriptine)                                          

Dostinex (Cabergoline)                                            

Permax                                                                          

Steroids                                                                        

Vasotec, Lasix                                                            

Dilantin       

Prenisone

Norprolac

DDAVP    

Pamelor, Prozac, Paxil                                     

Number of participants that answered "yes" 53

Number of participants that answered "no" 47

What percent of the participants had a prior weight problem? 53%

DO YOU HAVE A CURRENT WEIGHT PROBLEM SINCE DIAGNOSIS?

Number of participants that answered "yes": 75

Number of participants that answered "no"   25

75% off all Participants have a current weight problem in excess of 20lbs.

WEIGHT RECAP    

Average pounds over weight for the group studied was 50lbs. The numbers are slightly skewed by the 25% of the group that did not experience weight problems.  The smallest weight gain was 10lbs, the most excessive weight gain was over 200lbs (in one year).

Average pounds gained for the entire group was 40lbs since diagnosis.

Following is a tiny sample of the comments that were sent to me by the Participants:

Section: 1 Thoughts on the relationship between Pituitary Disorders and Weight Change.

THOUGHTS ON WEIGHT GAIN

There is one good thing that comes from being overweight…you start to look at people for their hearts, and hope that they look to you for your heart. Other than that, it’s miserable, and I haven’t any idea why this happened to me, except maybe to turn me into the person I currently am on the inside….(I hate to look in the mirror to see the outside)

It’s been a mystery to me most of my life. I don’t feel I eat poorly, or all that much, and yet I gain weight all the time. My thyroid gland is always tested, and comes back borderline slow. I would say, I gain 8lbs a year.

I don’t know what caused my weight gain. Could be the disease, could be because I’m a foodie and traded a very active job for a much more sedentary one. I have TSH test next week, and I’m excited to see the changes.

Yes, I had a weight problem before I was diagnosed, and I thought it was due to my body still thinking that it was breast feeding.

For whatever the reason, I believe (in my case) the underlying reason for my gain relates to 1.) for four weeks after surgery, Had no sense of smell or taste…thus I think I ate more because I was continually trying to attain a sense of "satisfaction"…ate food, did not taste, felt unsatisfied, thus ate again, hoping to be satisfied, etc. etc. 2.) now with smell/taste back, I find my appetite increased…this actually has been the case sind I started replacement hormones. I will eat a meal…an hour later I have a big appetite again. Steroids? Who knows. I feel I am going to have to start disciplining myself and have stated to do so…drinking more water…chomping on carrots to give bulk and offset the hunger.

Q: OVER WHAT PERIOD OF TIME WOULD YOU ESTIMATE THAT THE WEIGHT GAIN OCCURRED?

100 lbs over ten years.

100 lbs in past five years. (Diagnosed in Oct. 1997)

Since diagnosis, the first 20 pounds came on gradually over a 6-7 year period. The last 35 has come on in the past year and a half. (currently pregnant)

15 years (I had a full on, stage 4 tumor when diagnosed) At my greatest weight, two years before my diagnosis I was 80 pounds overweight. I went totally veggy and managed to loose 20 pounds.

I would not say I have a weight problem now, but I did gain weight. Around the time of the discovery, I had gained 15 pounds. I would say that I began noticing a weight gain around two months before discovery, once I noticed, I tried harder to lose the weight and no matter what I did, I could not lose it. Recently I have been eating a low carbohydrate diet and exercising about ½ hour everyday.

Prediagnosis, over a 24yr. Period. Post transphenoidal, over 5 yr. Period. (200 lb over).

Prior to the late 1980’s, I weighted between 160 and 180. Following surgery, I weighed 215. Within nine months, I was up to 260. I am now back to 230, but haven’t been able to lose anything for the past two months. However, I just learned that the adenoma is growing again.

50 pounds in twelve months.

Over the past 4 years I have gained approximately 35 lbs (14 since actually being diagnosed) 8-12 months, cannot remember exactly, but it seemed quick

The first 40 to 50 lbs happened within 6 months, after that I would have a strange weight gain every once in a while.

If so, estimate how many pounds you are over weight currently: 100 lbs.Over what period of time would you say the weight gain occurred? Within one year.

After I had surgery in July '97 I gained weight, twenty pounds in a month

2 weeks (20lbs)

6 months (20-25lbs)                                                            

The first 6 months after my surgery. (150 lbs)

1 1/2 yrs (60 lbs)

Did you have a weight problem before being diagnosed? For about 5 years prior to the diagnosis. The dr. who found the adenoma estimated that it had been growing for about 8 years.

Q: HAVE YOU BEEN SUCCESSFUL LOSING WEIGHT SINCE BEING DIAGNOSED?                                        

My cortisol levels fluctuate (too high, then too low) and so does my weight. Excess cortisol caused by an ACTH producing tumor results in weight gain.

Yes, I have had the energy to exercise. It's frustrating since the Parlodel also causes loss of muscle mass.

I can manage to loose 3 or 4 pounds, but then gain it back immediately

No. Only 5 lbs. here and there, which I would immediately gain back.

I fight it every day, I can control it in not gaining any, but losing it is a constant battle, my doctor says my metabolism doesn't work like everyone else’s.

Q: DID YOU HAVE A WEIGHT PROBLEM PRIOR TO BEING DIAGNOSED?

I did not have a weight problem until I was about 30. I believe that is when the pit tumor kicked in. I gained weight in large amounts very fast. For example I would gain 5, 10, 15, or 20 lbs within 1 to 2 weeks. This was in no way connected with what I ate.

Yes, only because it took the damn doctors over 3 years to diagnose me! In the 3 year time frame, I gained 27 lbs for absolutely NO reason. I eat barely nothing and never eat junk…..seriously! (25lbs over weight currently)

Weight problem was part of reason I went to the dr in first place. (at that time, 30lbs overweight).

Yes. I have always been on some what of a "yo-yo" with my weight loss and gain, but it is more extreme in recent years.

Yes, but at this moment its worse than ever! I began gaining weight approximately 2 years before being diagnosed, which was the time I stopped getting my period

My weight gains were greatest just prior to being diagnosed, but had continued to escalate for many years after being diagnosed.

I was UNDERWEIGHT…6’3" and weighed 180 lbs. After my initial surgeries and Radiation Therapy, my weight went up to 235 pounds. I have since brought it down to 212 pounds, which is about right for my frame.

This is what they wrote...to make it easier to comprehend, I have summarized it by "categories".  The actual list is several pages long, as all 100 of us described the effects of our Pitutiary Tumors differently.  These are the most common threads...

Energy Levels: Loss of energy and achievement in school,Fatigue, Overall fatigue and period of "low low's," where my energy level would just drain down to zero (sometimes it was a tremendous effort just to breathe, talk, lift my arms, hold up my head, etc.)

Exhaustion: fatigue, exhaustion, inability to focus and concentrate.

Emotional Effects: Depression, Anxiety, panic attacks and some depression, Apathy,  irritability/depression , disoriented at times, extreme mood swings and excessive paranoia, loss of interest in the things I use to enjoy. I have no "highs" and no "lows" anymore as I take anti-depressants to combat the emotional aspects of the pituitary tumor.

Galactorrea: inappropriate breast milk production

Weight Changes: Weight Gain, Uncontrollable, unexplainable rapid weight gain,Weight gain even while dieting

Pain: Headaches, Headaches and migraines (usually at least 5 days a week), Severe headaches, deteriorating vision---especially at night, diabetes,

Body Temperature: Body temperature problems,Hands constantly ice cold, Waves of chills; low tolerance for cold, Excessive, inappropriate sweating -- underarms, groin, hands, feet, hot flashes

Menstrual Cycle:Amennhorrea, Fluctuating menstrual cycles, had slowly started menstruating less and less…until I finally stopped altogether

Memory: Memory and intellectual decrease, Short-term memory problems and difficulty concentrating, lack of concentration, memory, unclear thinking

Libido: Impotence, decreased libido

Lactation: Inappropriate development of breast milk

Sleeping Patterns: Sleep disorders, unrestful sleep/insomnia, sleeplessness, inability to stay awake while sitting down to read, watch television and riding in a car

Physical Changes:  Following is the description of physical changes 

Constant shakiness, trembling,Numbness/weakness in hand and forearm,

Dizziness; feeling off-balance, almost like my head was in a fishbowl,

Lack of appetite and/or nausea,

Problems with motor skills and coordination, particularly my hands/arms and right side of my body,

heightened sensitivity to sound,

aching muscles, muscular weakness, muscle spasms

loss of hair,hair loss on scalp, excess hair on arms and legs

vaginal dryness,

I felt weird….lightheadedness, had headaches,dizziness,

bones breaking easily,

fatigue, muscle weakness,

thin skin, easy bruising, skin discoloration, adult acne,

diabetes,

Weight gain

high blood pressure,

purple stretch marks,

low potassium level

Speech Patterns: Sometimes slurred speech and difficulty enunciating

Vision: Blurred vision, deteriorating vision---especially at night, pain behind my eyes.

The complete survey touches on many other topics, and general thoughts from the entire group of 100 participants.

Email ToMajestic@aol.com for the entire recap!

~Information/Experience Exchange ~

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