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Cathy T, Pituitary Bio

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Hi! My name is Cathy Tia. I’m 27 yrs old and was diagnosed with Cushing’s disease 6 yrs ago while doing my first year of an education degree. I had worked in the fitness industry at that stage for 5 years and was fit and healthy but as soon as I started to fall asleep at the wheel driving into varity. I thought something was wrong symptoms persisted and weight gain fatigue, sweats, acne no periods. The list goes on, started to get out of control.

I went to a endo and she did some tests on my bloods and was shocked that my cortisol levels were in the thousands then we did some 24hr urine tests and they were as high as 3000. After nothing showed up on the MRI scan we did the petrosal sampling and it showed the source from coming from my pituitary gland so I then went to hospital for them to have a look at my pituitary gland they saw no visible tumour and that was that I then was put on a course of drugs as I kept going into adrenal failure where my cortisol levels were as low as minus 10 so no wonder I was in agony and feeling like I was going mentally insane. My weight dropped to 48kgs at the time of low cortisol, then my body changed again weighing in at 70’ish kgs.

I started to get heart palpitations and was exercising so much I nearly dropped dead but nothing I did seemed to help the weigh loss. My cortisol was tested again and again it was high, I went on a block regime to mimic what it would be like to have no adrenals before the trauma of the surgery well as I expected they didn’t bring down the cortisol in fact it increased. I went off all drugs as they made me feel so sick and I couldn’t even hold a job because of no energy etc.

Now 2 yrs later it is back with a vengeance and again there was talk of removing my adrenal glands but I refuse as the pills didn’t work so why would the surgery again? I said I would try the drugs. I have been on them 4 months and my levels which are meant to decrease have gone from 284 this week to 1225. My endo is at her wits end I’m going back to the hospital on Wed but I feel there is no light at the end of the tunnel as I feel we have exhausted all my options.

I’m newly married only 9 months ago I have the most supportive wonderful husband but feel bad for him as we can’t conceive and do normal things young married couple do as I’m always tired and hate going anywhere because of my appearance. If anyone has any answers out there or just words of support I would love to hear from you.

cheers, Cathy ‘mad’ Tia ( at least I feel mad)!!!!!!!!!!

Update Monday June 30, 2003:

Hi. Well, I have had more tests and yes they confirm that my Cushing’s disease is pituitary based, I had an MRI scan last night so we will wait and see if there is any visible change from the one I had done 4 years ago, then from there surgery.

I am gaining more weight and my skin is full of acne even though I’m on an antibiotic and the pill to help it, My periods have stopped even though I’m on the pill and the hair on my face and body is really embarrassing. I have totally lost confidence in myself and any situation I feel is stressful even paying the bills is an effort.

My diet is still very strict only protein and I try and walk and do weights everyday but I feel I’m losing the battle. I hate the waiting for results I just want them to hurry up so I know what my options are start them and get on with life!!!!!!

Frustrated Cathy ‘mad’ Tia (at least I feel mad).

Update Wednesday July 9, 2003:

As you all know I went for an MRI scan last Monday and the Monday just gone I recieved the news I had a 7mm tumour on the left side of my pituitary gland which means removal of that left side, I’m relieved after 6 years of cyclical Cushing’s there is something to show for it at the same time I’m terrified not only about the surgery but all the after effects the drugs the quality of life after this terrible disease!!!!!,

My husband and I are have amazing faith and support from family and friends but it is still such a roller coaster ride we are only 27 years old and have been married for 10 months we don’t know if we will ever have children which is so important for us. We don’t know where life will take us but we do and have accepted this is for a reason god works in mysterious ways so please keep us in your thoughts and prayers as we do for all you fellow Cushing’s patients out there what ever the stage of disease you are at, never ever give up be strong.

cheers, Cathy Tia from little old New Zealand.

Update August 3, 2003:

Hi everyone well it is now the 3rd of August 2003 and I am going to the hospital on Tuesday here in little old New Zealand, to have a meeting with the brain surgeon to go through the procedure. They have found a pit tumor on the left side of my gland and need to remove the whole side. Wow, pretty scary but at least I’ll feel better after 6 yrs of not such great health.

I’m excited about my future and hopefully my husband and I can start our lifes together with children in the future, I’ll write on Tuesday night to tell of my surgery date, if I get one.

Keep the faith, everyone. There is always hope we are the strong ones what doesn’t kill us makes us stronger! Feel free to email me on cathyscurves@hotmail.com.

Update August 22, 2003:

Hi everyone well I haven’t written in a while as you know the hospital systems are slow at getting things moving. As you know a tumour was found on the last MRI but now they think there is more to it so Monday 24th August, tomorrow, I’m going for another CT scan then surgery although I don’t have a date for surgery. I’m hoping it will be in the next month because I want to be out of hospital to share my 1st year wedding anniversary with my wonderful husband my angel here on earth at home not in hospital. I’ll keep you all updated this week for the next chapter.

Hang in there everyone. Remember, if we all stick together and send love through our thoughts we will beat this thing!!! please email me anyone if you want to talk I know I’m down here in little old New Zealand but don’t hesitate.

Update September 15, 2003:

Hi everyone it’s Cathy here agin from little old New Zeland, I finally have a surgery date it is on the 15th of October one month away it’s been a long wait but now I know the date I can plan my life!!!! I should be fighting fit for xmas day that was my goal so My husband and I can plan a holiday a family and get back into full time work. I’m so excited.

Hang in there everyone and please send your prayers and happy vibes my way on the 15th
cheers Cathy ‘mad’ Tia

Update October 10, 2003:

Hi everyone. Well, only 4 more sleeps to go until my 2nd pit surgery. Let’s hope they get the bugger this time. I’ll update you all as soon as I can focus on the computer screen
cheers Cathy

Update October 27, 2003:

Hi everyone! Well, it’s 2 weeks tomorrow post op. I’ve been home 1 week and recovering well, things went to plan as you all know the discomfort only last 3-4 days and my cortisol is dropping which is so positive. We will know for sure in a month. I’m hoping it comes down and stays down so we know I’ve been cured. I’ve already lost 2kg’s and the high colour in my face has gone down my joints are not as sore and my acne is clearing up. I can’t believe in 2 weeks. I’m already looking better. I ask you all to keep praying and sending happy healthy thoughts and vibes my way as you all know this is just the beginning as it is such a reecurrent disease. I really want to avoid having my adrenals out which they will do asap if my cortisol doesn’t stay down. They say this is the only way for sure to cure Cushing’s disease.

But I send hugs and kisses to you all and anyone whos going to have pitaitary surgery either for the 1st time or 2nd don’t worry just relax and go with it rest and recover as much as possible then get your life back please feel free to write to me my email is in this bio.
cheers Cathy ‘Mad’ Tia

Update November 26, 2003:

Hi all, well it is 6 weeks today since my second pituitary surgery, I developed diabetes insipidous but that has gone now hooray no more peeing every 2 minutes, ha, ha.

Well the last 2 blood cortisols were high again so I’m really bummed out the first 3 weeks after surgery it seemed to be on the way down and I lost 5 kg’s I was elated, but now the symptoms have returned the tiredness puffiness etc and I’m not even on any replacements I haven’t had a period so it looks like the adrenals will have to be removed bummer!, I have just completed a 24hr urine collection so the results should be in early next week everything hinges on this result if it is high they are taking me straight back in for the double adrenalectomy if anyone has any suggestions or has had the same experience please email me I feel depressed again just as I thought I had my life back on track.
kind regards Cathy ‘Mad’ Tia

Update December 4, 2003:

Hi everyone me again, well unfortunatley my cortisol is high again after 6 weeks post op so I am booked in to see another surgeon next Wednesday to talk through the procedure of a bilateraladrenelectomy (what a mouthfull), could anyone who has had this done please email me as I’m terrified and want to know what to expect in regards to recovery time, sickness, etc

keep your chins up

talk to you when I have more gossip
Cathy ‘Mad’ Tia

Update January 29, 2004:

Hi all well happy new year to you all. I have a CT scan date on Feb 16th of my adrenal glands then surgery will follow hopefully soon after that I’m scared and would love to hear from others who have had their adrenals out because I’ve heard some horror stories, please email me.

I have had an interview with a local magazine that goes out to the nation telling my story and journey with Cushings disease it was fun my husband and I have had photos etc I will post it when it comes out next week I just want others to be more knowledglable and perhaps people may come forward and talk to me if they suspect they may have it.

I would love to set up a support group in New Zealand because there is no one I can talk to here.

Well I’ll talk to you all soon and please email me if you have any words of encourgement.
God bless Cathy ‘Mad’ Tia

Update February 3, 2004:

Hi all! Well, I have more exciting news from the magazine article that has only been out two days. I have been asked to go on a morning talk show televised across New Zealand to talk about the disease and my story and have already recieved emails from others in NZ that have been cured. It is so positive it makes me want to get on and move forward to help others when I’m finally cured hooray! I’ll update soon when I’ve been on TV.

God is good god bless you all Cathy ‘Mad’ Tia

Update March 30, 2004:

Hi guys. Well I finally have a date for my adrenal surgery. 2 failed pit surgeries so here is their last ditch attempt to cure me hooray!

It is scheduled for the 15th of April 2 weeks time so I’ll get back to you as soon  as I’m up to it, please pray for me as this is the final time hopefully then I’ll be rid of this nasty disease.  I would love you guys to email me whoever has had the adrenals removed to tell me the good and bad things during recovery so I’m prepared.
cheers everyone and hang in there.

hugs cathy ‘mad’ tia

Update April 29, 2004:

Hi everyone. I’m back it’s 2 weeks today since my surgery the removal of both adrenal glands. I feel I’ve been to hell and back over the last 7 years but I’ve come out on top I’m sore and bruised but feeling the best mentally and emotionally the best in almost a decade. I’m on a normal dose of hydrocortisone which understand the average person produces and have already seen marked changes in my appearance like redness had gone, night sweats aches nausea are all gone in only 2 weeks so I’m looking forward to getting my body back.

Thank you all for your support and I will keep you updated as to my situation. You all must hang in there and fight fight fight! Your day will come in those dark days of despair never give up tommorow is always better and you don’t want to let this disease win you can do it.

Update July 3, 2004:

Hi everyone well it’s been ages since I wrote I have had both adrenals out and finally I feel normal most of the Cushing’s symptoms have gone and the old Cathy is slowly emerging it is nearly 3 months since surgery and I have lost 9kgs and am looking not so tired and puffy hooray when people ask how I’ve lost the weight I say I’m on a cortisol diet which they laugh and don’t understand but I know you all do.

Well if any of you are scared to have this surgery don’t be they do it all keyhole so it’s neat and tide and it has changed my life I feel like a near normal 28 yr old who can restart her life my husband and I are so happy we have been given a 2 year gap to try for a family before radiation to the pit gland to avoid Nelson’s Syndrome so it’s not over yet but I believe it will be all worth it soon.

Well take care all hold your heads up high and be strong.

Update September 26, 2004:

Hi it’s Cathy Tia here again, well my husband and i have just celebrated our 2nd wedding anniversary cushing free hooray!! IT IS A BLESSING TO HAVE MY HEALTH BACK. It has been five months since my adrenal surgery and have had one adrenal crisis due to an underlying viris which was a bit scary i was in hospital for 5 days being pumped full of hydrocortisone ironic really after 8 yrs of having too much oh well, i’m back and working full 3 different jobs and loving life. All of you out theree still waiting to be cured please hang in there it is so worth it you will never take life for granted again.

God bless to you all and please never give up.

Update January 31, 2005:

hi all well a little update to my story. It has now been 9 months since i have my adrenal glands removed i have lost 27kg’s and people are starting to recognise me again all of the symptoms are gone i now have addisions disease as my adrenals can shut down the meds i take are cortisone and hydrocortisone to help with balancing my hormones out. I have had one adrenal crisis but recovered well. Peter my husband and i are on the fertility track now i am on fertility drugs to hopefully bring us a little bundle of joy this yr i also have PSCO so having a baby is a challenge but i know God will bless us when the time is right. I am working again like a normal person and can get through the day without a sleep.

Life is great. To all of you in the beginning, midst or end recovery phase of this terrible disease please always have hope and determination, remember you are what you believe so keep positive.

God Bless Cathy ‘mad’ Tia

Update January 31, 2006:

Hi all well it’s beena yr since I wrote. Alot has happened for my husband and I. Last time I wrote we were embarking on a huge rollercoaster ride with IVF fertility treatment and guess what we have had two cycles and the second one worked like a dream. We were given 15% chance of ever getting pregnant with the trteatment so we are proof that doctors only know so much with much gusto determination prayer and support from family and friends we did it we are now 3 and a half months pregnant due August 10th 2006. We feel so blessed and want to let you all know this can happen for you keep the faith and search inside yoiurself about what your life is worth this disease is only a label not who you are, seek and you will find the answers even if it has taken yrs it’s taken me 10yrs of being sick surgeries lost hope and regained faith. God has a plan for all of us and now I’m going to be a mum i can hardly believe the blessings.

I have had 2 trips to the emergency ward with adrenal crisis being pregnant does put stress on the body so now i have altered my drtugs i feel great i have only had 2 weeks of morning sickness and noew i have full energy back and only get tired like anyone at the end of a day. I ahd emergency surgery last week for an abcess caused by mastitis even though i haven’ breast feed they tink because my immunity is lowered by having no adreanl glands it wa so serious.

In my mind I know i always have to be careful but my advice to eveyone is live each day like it is your last be knind and never stop loveing or giving because it will come back in ten folds as it has for me.

God Bless and kind regards to all my fellow cushies, families and supporters.

Hugs cathy tia

Update October 25, 2006:

Hi cathy Tia here from New Zealand last time i was trying to concieve through IVF and we did it we have had a beautiful baby girl Grace Ruby weighing 6 pounds 13 ozes 3 weeks early all is grand with all of us healthy and loving being a family. Keep the faith and hope if you believe with your heart your dreams will come true.

cathy tia

Update February 22, 2007:

hi 22/2/07 cathy here agin

i now have another new 5mm tumour on the right side of pit gland due to having nelsons sydrome after nearly 3 yrs ago having boyth adrenals removed

any suggestions on what to do? they want to give me radation. has anyone had this?

cheers cathy

Update May 3, 2007:

hi all well my daughter is now 9 months old , I mde the decision to havea breast re3euction last week and am so thrilled with the results the 12 yrs of cuhsings and three yrs of addsions (removal of glands due to recureent cushings) ravished my body i feel young again and sexy hooray for my husband!!!

I had a very scary time this week though due to the stress of the surgery on my body my addisions played up big time and i ended up in Er twice having cortisol shots and saline to give me balance, i’m still very tannedyellow and can’t seem to get on top of the balance but feel better than last week.

Has anyody experience addisions after cuahings?, i’d love to hear from you and ask how you mmagae your balances of medications and water balance.

until next time,

Hugs feloow cushies/addisions

Cathy Tia

Update September 17, 2009:

hi all well its been a while my daughter is now 3 and i have a beautiful miracle son called Elijah who is now 6 months old , i ahve had a great run since having my adrenals removed and had the breast reduction i’,m even breast feeding a real miracle and testament that if you have hope you can achieve anything. i ahve had many talks to churches and articles written to educate people in New Zealand and hope to give them hope whatever their circumstances.

unfortunatly i may ahve developed nelsons syndrome so am having an MRI in 2 weeks to see what the pituatary tumour is doing if it has grown i’ll have radiation to shrink it.

hope this finds you all well.

God Bess Cathy Tia

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Addison’s Disease: Periods at 4 years, Menopause at 5

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A five-year-old girl from Australia who started menstruating at the age of four will soon start exhibiting signs of menopause, a result of Addison’s disease.

Emily Dover’s birth was absolutely ‘normal and happy’. By the second week, however, she started growing at an unusual rate. She was the size of a one-year-old by the time she turned 4-months-old. By the time Emily turned 2, she had developed breast buds, body odour and a rash on her skin that was diagnosed as cystic acne.

In addition to Addison’s disease, Emily has been diagnosed with congenital Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.

The 5-year-old’s adrenal glands don’t produce enough steroid hormones.

Emily’s mother Tam Dover said her daughter is body conscious and aware that she is different from other children her age, reports Mirror Online. Sadly, the little girl is unable to understand what she is going through.

Constant pain and reduced mobility required Emily to undergo weekly physiotherapy sessions. At present Emily is five years old, and has started menstruating. After she starts a hormone replacement therapy, she will hit menopause, with all the side effects a woman over 50 years of age has to face.

“She hasn’t even had a chance to be a little girl. She’s having to learn how to put panty liners on for menstruating,” Tam tells Mirror Online.

Tam has set up a GoFundMe page to raise money to cover the ‘astronomical’ costs of her daughter’s treatments and medical care.

“Each time her growth was measured it was always way above the 99th percentile, and often 99th percentile for a couple of years above her age,” Tam wrote on the GoFundMe page.

From http://www.hindustantimes.com/health/periods-at-4-years-menopause-at-5-the-little-girl-who-never-got-to-be-a-child/story-p2kkpyd31fvsBzP21LDWcO.html

~~~

 

Vicky (Vicjy), Adrenal Bio

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Hi. For the last couple of years I have had different symptoms. I’m 45 and feel like I’m 70. I think it started about 3 years ago. I would break or fracture something and it would take forever to heal. I gained over 60 lbs. I’m always tired yet don’t sleep well. I look like I’m 9 months pregnant but skinny arms and legs. Stretch marks on body. Round red Face that constantly feels hot. My back has a hump and my neck has fat pads. Finally, prehypertension. I also have intense itching especially in a soecific area. Oh, let’s not forget anxiety and focus issues. .

I had enough. About 7 months ago I began going from doctor to doctor. Every test came back fine and they dismissed me. Finally, I went to an endo. She tested me for Cushings. I gad 5 tests and all came back positive. All this took time but I tried to be patient. I know this is horrible but I was actually happy to finally have an answer to my issues. I then had a CT scan and found an afonona in my left adrenal gland.

I had surgery a week ago today. I’ve heard so many different stories of figuring out if they have cushings but little about their recovery. I’m hoping to hear people’s recovery stories. I’m actually much better than I thought I’d be. I’m weak, still some pain at surgical sight, out of breath, and very emotional. Also, hard to do an intellectual activity before feeling overwhelmed.

Can you all share your journey? I’m taking 40 mg of hydrocortisone a day. I was wondering if anyone had itchiness as a symptom. Doctors have told me that they haven’t heard of that as a symptom of cushings. It is horrible with me and am hoping it will go away with this surgery. I feel like it has gotten better.

Looking forward to hearing about some recovery stories and feel free to ask me anything to help other understand what they are going through.

 

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Mary S (ladysslipper), Adrenal Bio

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Originally from December 28, 2007

I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.

Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.

My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.

My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.

With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.

I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.

 

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Sheryl, Adrenal Patient

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I was diagnosed with Cushings Syndrome of the adrenal glands in September, 1973. I underwent a bi-lateral adrenalectomy in January, 1974. 30 years ago.

I’m sure some things have changed since then; I was in the hospital for 3 weeks post-op. I had all of the symptoms listed on this site. I originally was in the ER for what turned out to be a kidney stone. While there the doctors noticed a few oddities. For me the symptoms had been coming along so gradual that no one really noticed. The kidney stone was one result of Cushings. From the ER I was sent for many tests. MRI was not available then, and a test was done by threading a catheter into the groin area artery and shooting dye into it in order for the doc. to see the tumor(s). I tried to find it interesting and it was except every time they pushed more dye into me it was painful and eventually passed out.

By that time I had entered the hospital knowing surgery would happen and that was the final test to make sure exactly where the tumors were. The surgeon told me afterwards that each adrenal had a huge tumor-benign-fortunately-each one the size of a grapefruit. The surgical incisions were made in my back, one on each side of the spine, in a sort of half moon shape. They are quite large because the tumors were so large. The replacement therapies required are hydro-cortisone and florinef. Because everyone is different you may have a different dose than I do. It took quite some time for my body to really become adjusted to the replacements. At least 5 years for me. I would hope for you newcomers that medical progress has considerably lessened that time!

I did have to be hospitalized on 3 or 4 occasions afterwards just because my body was still adjusting and because this is a rare disease not too many docs understand it. At any rate here I am 30 years later and this is the first time I have ever been able to really talk to anyone like me.

I kept asking my docs if there was anyone I could talk to, but they were not aware of any. I am 51 years old now, and feel so very uplifted that I can finally share with others my experiences of ups and down. I am married to the most wonderful man in the world, who is very supportive in every way. We have 2 children, our daughter is 21 and our son is 19. Our son is also a special needs person, having been born with cerebral palsy. He uses a wheelchair and is mentally delayed. PLEASE NOTE: His birth defect was not in any form or fashion caused by my having had Cushings. Do not be afraid to become pregnant and give birth. Unless medical information has changed for this area-we were told by many specialists and OB’s etc. that CP did not result from the Cushings.

I have been going through perimenopause and menopause since I was 38. (I was 21 when I had my surgery.) It has been difficult finding a doc who believed what I was telling him. I have been on various hormone medications for the menopause. At present I am taking Prempro for it. In all, the medications I am on include 30 mg. of hydro-cortisone, 1mg of Florinef and 30 mg. of Prozac. I know Prozac has been bad for some women, but for me it was a life saver. I had severe mood swings more than just once a month.

I would like to correspond with anyone who would like to know what may lie ahead after surgery, and also anyone who might be in the “older surgery” area. Just knowing that this site exists is heart warming! Hope to hear from you all soon. Love you all-Sheryl


Listen to Sheryl’s Interview here.

 

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JoAnn (Flojo3), Adrenal Bio

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After reading this website for awhile, with much interested and appreciation, I thought I should post my introduction even though I don’t have a confirmed diagnosis yet.

I am a 63 year old Canadian widow who recently retired – partly because I was finding work difficult, i.e. not as sharp mentally, fatigued, less motivated, sleepy in the afternoon, digestive problems and some days just not feeling well.

My symptoms started about 11 years ago. Acne/boils started developing on my face and I also noticed, after growing my hair longer, that it became curly after being straight all my life. About this time I also gained about 35 lbs. quickly. As I wanted to quit smoking I went on the Atkins Diet and walked at least an hour about 6 days a week. I did lose the 35 pounds in 5 months. However, when I did quit smoking some months later I gained 65 pounds in 6 months – more than I thought I deserved to gain (I am 5′ 2″). At first my doctor was not concerned as he said I had not ever been heavy and would start losing this weight. However, after three years or so he began to strongly encourage me to do so especially once I developed very high blood pressure and cholesterol. I was trying but with no success.

In addition, some of the symptoms I have been experiencing, some off and on, are: dry skin, skin tags, thinning hair on the top of my head, e, aches and pains (including repetitive strain injury), fatigue and anxious feelings. Last summer, for a short period of time, I had very dark pigmentation under my arms, under my breasts and on my forehead. I am on medication for high blood pressure, high cholesterol, thyroid and hiatus hernia.

Over the years I did mention some of these symptoms to my doctor and he said it was probably because of my overweight. I have been doing research on the computer for years and several years ago he readily agreed to send me for testing for PCOS although he didn’t feel that is what I had because I have 3 children.

Last year I had, I believe, two bladder infections and this year when I went for my annual check up on November 29th he found I had one again. (This is embarrassing!) I had no symptoms/pain though – maybe just frequent urination especially at night. As a result and because my mother had kidney cancer, he decided to send me for an ultra sound on my kidneys. My followup appointment was on December 22nd. He said my kidneys looked fine, however, there was an abnormality in my adrenal glands. I think he said they were swollen. He said they are not suspecting cancer and that is probably why I couldn’t lose weight, had high blood pressure, etc. He seemed pleased that finally there may be an explanation for my various symptoms. I must admit I did not tell him everything as I did not want to seem like a hypochondriac. My doctor ordered a CT Scan (appointment originally April 11th) and referred me to Urologist.

I had my appointment with him on January 14th and he rescheduled my CT Scan for January 28th. I recently completed lab work, i.e. 24-hour urine test, glucose, creatintine, uric acid, sodium, potassium, chloride, CBC (Hematology), urine test, serum Cortisol 8 a.m. test and a urine R4M (can’t read that writing too well). On February 15th I have a follow-up appointment with the Urologist. I have mixed feelings. In one way I am very happy at last that I am not “crazy” and something is wrong, however, I am frightened at what is ahead. Also, part of me wants to know everything and part of me wants to let things unfold a bit at a time. For the most part I do feel positive and feel that if it was cancer I would not have been having symptoms for at least 11 years. So I continue to read/research every night and have learned a lot from this board (have started to keep a journal) and am enjoying the humour as well. Sorry this is so long but it has been many years of various symptoms and frustrations. Thanks for reading my introduction and for sharing your knowledge and experiences.

JoAnn

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Aimee, Adrenal Bio

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I am the daughter of a Cushing’s patient who is workning on her BLA and switch. My mom is not always able to be on line, but is very interested in the networking that this site offers. So for right now I am the deligate and the Patient advocate whenever she is in the hospital.

Mom’s (Pat) history is complicated and lots of different turns have taken place. She was diagnosed very late into her case and has often had the worst of what can happen happen. A true trooper through it all but she is starting to really lose the desire to fight and yet more and more is happening. So I am hoping that the networking will help give her the little boost that she needs.

The brief run down: diagnosed Cushing’s, Pituitary surger (no tumor found), gama knife surger, chemical treatment, 4 – 5 years of sitting on the edge and then 4 years building back up to full blown Cushings.

Now she is have BLA in Feb. 08 and we are hoping to move forward. During the time between full blown she had 2 back fusions (1 did not take and will have to be redone) 2 knee replacements, and an assortment of other stuff. So as you can guess he poor body is worn out and ready for a rest.

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