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Surgery Story, pt 1

Back to topic... Surgery was September 30, 2005. It was a day mixed with fear, and hopeful expectation. I had been miserable for so long with escalating symptoms, I was hoping for some kind of miracle that would restore me to the person I used to be. The fear comes in, because of the nature of the surgery. The Pituitary gland is located in the center of the head, under the hypothalamus, which is situated right under the brain. No slips, guys, no slips. To make it more complicated, my tumor was p

FerolV

FerolV

January 28th 2007

Vacation 2002 In my late 20's I began to experience ailments that could not be contributed to my age, or other extenuating circumstance, continuing through my mid-40's. I began experiencing nights sweats; sporadic tenderness in certain unmentionable locations; hair loss increased (by the brushful daily); and in time female dryness and irritation; unexplained weight gain & water retention; hypertension; hair growth in non-female areas (hirsutism); Type II Diabetes; with the onset of the weig

FerolV

FerolV

January 27th 2007

My grown family from the period of our 25th anniversary. I thought it would be a good time to update the family photo. We celebrated a few times. Here in Charlotte with family that came in for the event, and 20+ years of friends and associates. Then we traveled up to Tidewater, to again celebrate with family and OLD friends. Then down the coast to Nags Head, to extend our stay in the coastal area and get in some deep water fishing. Harold likes to tell this story: We had planned this deep sea tr

FerolV

FerolV

Blog Construction in Progress

I intend to copy from TWO external blog sites (thanks to IP mergers) my prior text and set up the ONE Cushings blog here. Construction Zone ahead...

FerolV

FerolV

Get a FAX Number!

When I started testing at home, it was really a good idea to obtain an online fax # with a fax center to recieve in. I got mine at     Smart Fax   http://www.smartfax.com/   First 30 days are free....Cancel at anytime. I might not even use it for longer then that! Easy, right to my home and read my results without waiting for snail mail!

LilDickens

LilDickens

Lab results- Camp Cushie Oct 2010 Serums ACTH and Cortisols

Date........ Time ......Cortisol ..... ACTH   10/25 ...... 1100 .........6.6 ..........19.5   Tuesday______________________________   10/26 ....... 0001 ...........4.6 ..........35.1       10/26.......0001(0030)...5.1 ...........25.7       10/26 ....... 0400.......... 0.1 ............78.0.   .Stim Test-------------------------------------------   -10/26 .......800.......... 10.7 ........ 33.6   10/26 ....... 0830 ...... 26.3 ...........   10/26 ....... 1200 ........ 4.5 ...

LilDickens

LilDickens

Camp Cushie Oct 2010 ... Wow, what an awesome experience!

The first thing I must say is the Radiolgist here! ROCK! I had a CT Scan without contrast, but was prepared for it, and with two swipes they had a satisfactory reading for my doctor. The reason I praise them is because they are the only ones after two other chest x rays ( and another CT scan for adrenals), that came up with the answer why I can't breath and my chest hurt!I am all packed and ready to fly home today. I will review the report later!~ Monday..one week after Camp Cushie- Did

LilDickens

LilDickens

Battle to see Dr. Maas

As I see Gaby on her up and down days, I find that I may have been neglectful of her symptoms over the past few years. She told me she was dizzy and had a headache, right behind her forehead. Her obesity was just her stomach and back. I saw the hump. For some reason I thought and reasoned out every symptom. Basically that she was lazy, and didnt want to do anything with the family.   This is causing relationship problems between me and my husband, he thinks she is faking it most of the ti

LoriW

LoriW

MRI

Gaby had an MRI today, with and without contrast. I am anxious for the results, wondering how long it will take to get them. I have a copy to send to a doctor that deals with cushing's disease. I have been trying to reach her doctor so she can get a midnight cortisol blood draw. Of course, its almost 6pm now, no call from her doctor, and from I have read she would test high right now. She says she is awake from 1 or 2 am to 5 am or later, can't sleep, thirsty all the time. But of course no

LoriW

LoriW

Gaby

Gaby went canoeing with friends came home exhausted, and bruises and scratches all over her. She had a great time, jumping off bridges -ugh teenagerrs. I guess I will keep track of her healing rate. I am nervous about her upcoming MRI, hopefully will get some answers. She is still in a low I think, she sleeps through the night, but she is tired during the day. She woke up twice the other night because she was so thirsty, she said she thought she was going to die. I read of many people hea

LoriW

LoriW

Szam?r Mad?r 6/23/2010

Wed. June 23 2010   I guess before i start i should tell you what Szam?r Mad?r means. It is a dutch phrase that literally translates to "Donkey Bird" but means "stupid bird". I don't speak dutch or know much about the culture either, i only know this phrase because it is the title of a song by Venetian Snares, a breakcore master and one of my favorite bands.   Anyway, I must confess that I have never written a blog. Haven't ever really kept a diary either. I tend to want to keep my very dee

HanHen3

HanHen3

Here I am and it is 2010

I have accomplished nothing much. I hadn't kept up on this forum and should have done a lot more. I now know I weigh more than a whopping 440 lbs because I couldn't even weigh on this one scale my friend just bought for herself. I need to find out if this is some kind of medical condition caused by something abnormal or if this is weight I can lose and have just gained and gained easily over the years. It is going to be even harder now. I am following weight watchers and will start swimming this

SleepyTimeTea

SleepyTimeTea

HELP! I need a doctor who specializes directly with Cushing's I already see to endo at OHSU, but still no help told me it is too rare to have

I am looking for information about doctors wh specialize in Cushing's syndrome in Portland, OR or somewhere around Oregon or Washington. I am 99.99% sure I have Cyclical Cushing's and have had it for the last 16 years. I currently have to endocrinologists at OHSU even though they are great physicians they they are hesitant on diagnosing me with it they want me to have Gastric Bypass, they keep saying Cyclical Cushing's is too rare for me to have. I have had 3 episodes/cycles since I was 16 ...

WendyG

WendyG

Help!

I'm not quite sure how to go to make a new comment on the same blog, but Gaby has had a really bad day. She was dizzy and said she was tired and just felt like crap. Without a diagnosis or even a prelim. I want to keep her active, but not sure that is the best thing for her. She is walking and swimming (won't take off her t-shirt or shorts), her depression at times like today is severe, and I worry that she is not coping well with the idea of cushing's disease. I wonder if this is nomal 16ye

LoriW

LoriW

New with questions

We have recently taken my son to the doctor for exhaustion, depression, moodiness, odd stretch marks, rapid weight gain, muscle aches, etc. She sent him for blood work. She checked his thyroid, for anemia, and his cortisol levels. She said that she felt sure that it was his cortisol levels because of the rapid weight gain, his round face, and the fatty pocket on his collar bone. On the way home my son mentioned that he thought that it could be Cushing's Syndrome. He had seen it on House. I had n

mthrgonenuts

mthrgonenuts

June 1st 2010 almost 4 months since my surgery

Well I am having problems for the last week. I am having pains in my joints and muscles again, like when I was weaning off the hydro. In the morning it is a little better but the evenings are getting untolerable.   Tried to call my PC this morning but have not been able to get through to her. I want to order salivary test, morning cortisol draw and thyroid tests.   I'm so tired of all this, and my weight loss has stopped. How discouraging.   Going to post on the forum see if I can get any

Marisa

Marisa

ITT Test March 3, 2010- 6 weeks PO

Results 6 weeks Post Op ITT Test at Allegheny General Wow, I was really low in somethings (noted in Blue)! ACTH 23--------------------------10-48   Creatine .74-------------------------.70-1.50   Sodium 141--------------------------134-142   Potassium 4.0------------------------3.5-5.00   Chloride 108-------------------------98-107   Calcium 8.7-------------------------8.4-10.3   Estradoil <5-----------------------------<40   Folic Acid 16.4 ----------------------3.5-

LilDickens

LilDickens

April 29 2010 - 11 weeks post op

Well once again its been a while since I posted.   Now I am feeling better. Not there yet but definately better. I still have some aches especially in the morning when I get up. My right arm feels like I have carpral tunnel, my two fingers keep falling asleep. I sleep at night with an arm brace and take it off in the daytime. I believe it is getting better. I also have tennis elbow, and that started acting up, but I know not to pick up heavy things until the pain subsides.   I stopped tak

Marisa

Marisa

yet another request for some help

Well, I had my surgery on February 4th. It was probably one of the worst things that I have ever had to endure........ everyone made it sound like it was going to be fine. My doctor told me I would probably be out in a day or two. I ended up being there almost a week, and probably could have stayed longer. While I was in the hospital I developed Diabetes Insipidus, and was sooooo thirsty and going to the bathroom so much that they put a bedside toilet next to me because I couldnt make it to

HollieK

HollieK

March 29th 2010 - 7 weeks post op

Well as you can tell it's been a while since I have blogged.   I went through withdrawals from weaning off hydro and the body aches and pains were very painful. I have found ibuprofen helps.   On March 17th I had the ACTH stim test and the next day my endo called and said my right adrenal was working, and I could stop taking the hydro. I had weaned down to 5mg a day.   Even now though I get pains in my body still....especially in the evenings. If it gets bad I take ibuprofen again! So f

Marisa

Marisa

My Pathology Report from Jan 28, 2010

Pathological Report :   A.) Pituitary Adenoma B.) Pituitary Tissue   Stained for the following : ACTH: Neg GH:Positive FSH:Neg TSH:Neg     A.) A Pituitary Mass consisting of 4 fragments sizing from 0.1 to 0.2 cm. Soft tan pink friable tissue B.) A Pituitary Mass consists of seven portions of tan red tissue , varying from 0.2 to 0.7cm in the greatest dimensions

LilDickens

LilDickens

Acromegaly

http://www.endotext.org/neuroendo/neuroend...endoframe5e.htm   Whoa, good article     Given the chronic nature and associated significant increased morbidity and mortality of acromegaly, treatment is required for almost all patients. Three modalities of treatment are available: surgery, pituitary irradiation and medical therapy. All of these have advantages and disadvantages and more than one modality is frequently needed, often all three. The decision as to whether to treat and the modali

LilDickens

LilDickens

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