Facing Life Objectively:
DxedCushings with Acromegaly Nov 09
Surgery on Pit tumor Jan 28, 2010 Endocscopical ( no packing)
Day 6 :
Feeling lighter, like breathing better
Vaginal area tightened
Tongue decreasing in size
Normal Bowel movements
Can sleep on side where pain use to be
Can get up from a squat
stiffiness going away
Feet stopped being sweaty
Lost 4-5 lbs!
Lack of taste
I showed concern in one of my post about having contracted MRSA and looking towards the future for having surgery.....Thought I would be turned down or something. Here's a really good answer I recieved:
Yes, you can have surgery. The doctors will want to make sure you have pre-op antibiotic coverage.
The best thing you can do to reduce the risk of a post-op infection is to wash with hibiclens (an anti-biotic soap) for a couple days before surgery. It reduces the bacteria on your skin
As I sat in the ER room waiting for a DX, a Dr was going over my health history, a short qiuck intro to my extended health issues. You could see the dismay in his eye that he had yet another case to deal with. My Family doctor didn't come to the hospital so I was adopted by the physicans on staff. I started to tell him about the high cortisols I've been showing and how I mighthave Cushings. Right away he jumped on me, and with his foriegn accent he said " no, no, why you say this?" I showed him
I am taking this off of another entry but I think it is really important to keep this address for alot of us Cushies..... Can have it done at Pitt.........
Great source for free reading of MRI's, UPMC (University of Pittsburgh Medical Center)
I am going to borrow this from one of our members. She hadn't slept for 2 years. To make a long story short, she found out that using Predisone instead of Cortef worked for her. It is stronger and from what I understand, longer lasting.....
She is post op for 2 years.
Great news, I started taking a Prednisone at night before I go to bed, and wonder of wonders its working. I have slept, although I wake up a couple of times at night, for the last 4 nights. I had tried the Cortef
Borrowed from another poster...Article from Dr F on Iron
"My endo, Dr F., puts his patients on an OTC product called, Iron Sorb. I have zero GI symptoms.!!!!
Initially my ferritin was at 10 and is now reliably at 70-80. That's the level you want to keep it at.
Here's the white paper he's written for his patients and docs to read. It will give you specific instructions on how many iron sorb pills to take a day depending on your current ferritin level. Also a link to the product and
Wow, can't believe how impatient I feel...It's so very hard when I am waiting on Dr Mc to reply back to Dr Holmes about my recent MRI. It just seems like I am getting sicker everyday. I am getting depressed! My hands are so full of troubles right now, mom living with us with Alz, my hubby broke his thumb and home for 6 weeks now, and so on. Cushings Help gives me so much hope and helps me to stay on track.
""My Cushings and paraneoplastic wastings syndrome were caused by a cancerous tumor in my left lung. Of course every doc I saw said that it was from poor diet and lack of excercise even after i told them I have the perfect diet and fitness plan and can gain 3 to 6lbs in one day. Docs did not believe almost everything I was explaining but I kept going to more docs and explaining everything all over again. When I finaly convinced a doc i had cushings several scans of my head were being done. brain
Symptoms due to excess growth hormone or IGF-I vary widely. Increase in ring size or tightness of rings (due to hand swelling, "sausage-like" fingers) Increase in shoe size (due to foot swelling) Increased sweating Coarsening or thickening of facial features, especially the nose Increased prominence of jaw and/or forehead Thickened skin, especially on palms of hands or soles of feet Oily skin or acne Swelling of tongue Thickening or swelling of the neck (due to goiter) Arthritis (pain, swelling,
"When people with Cushing's syndrome or Cushing's disease have complex dental procedures, they may be at higher risk of infection. They also may be at risk of cardiovascular collapse, in which the heart stops pumping blood.
If you have Cushing's syndrome, it is critical that you tell your dentist or oral surgeon about it before you have any procedures. They also need to know if you are taking a steroid medicine. Your dentis
Pittsburgh bound travelers
My family is staying at Allegheny Center in Pittsburgh, PA ( thanks to Gracia)
They rent studio apts by the day, three day minimium. I paid $75 for a completely furnished with King size bed. Linens, pots, pans, everything!
You can also rent Bigger apts for $85 and up. No taxes, they are not a hotel.
Parking is $3.50 a night; everything is secured. They shuttle twice an hour to/from Allegheny Hospital (dont know
Yes, I am sitting up in my room at 4 oclock in the morning hungery ( so I ordered a snack!) I got a real big delicious turkey sandwich and a side of applesauce. I am in heaven!
Surgery went really well. I had a long wait in the pre-op, from 7:30 am until my actual surgery at noon. I then had difficulties after surgery; they forgot to give me anti-nausea medication, and I was sick and flinging around ( I dont remember) and cut my hand. I wonder if this could have been a cortisol
MaryO posted this the other day. Very interesting and may be helpful for you to bring to the doc.
4 Ways to Diagnose Cushing's Syndrome
1. Common Signs
A physical exam is often the first step in a diagnosis of Cushing's syndrome. Several physical signs indicate the syndrome. Your doctor will look for a hump in your back between the shoulders. People with Cushing's syndrome often have a rounded face, and they may have excess facial hair. The face may also be flushed or have purple mar
base 33 H
I have no range to go by.
25.3 base High ( 10-25)
(The measure is 50% increase in ACTH after CRH and 20% increase in cortisol - my comment)
Corticotropin-releasing hormone (CRH), the hypothalamic peptide which stimulates ACTH release from the pituitary gland, has been available for investigational use for nearly a decade. The formulation of greatest clinical utility,
I discovered the trail of Acromegaly on my body...I have been Dxed with and Surgery for:
Carparal Tunnel Syndrome- surgery both hands
Dental problems-rebuild bridges
TMJ both sides
Ring size changed 3 times
Grew 1+ Inches in height
1/2 shoe size up
4-5 dress sizes up
Hemmeroids and surgery
Cysts- Ovarian and Gangoloin- Surgery
Hat sized up
3 Ceserean Births- did not dialate
Emergency surgery on foot- MRSA
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
Pathological Report :
A.) Pituitary Adenoma
B.) Pituitary Tissue
Stained for the following :
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
Results 6 weeks Post Op ITT Test at Allegheny General
Wow, I was really low in somethings (noted in Blue)!
Folic Acid 16.4 ----------------------3.5-
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
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
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!