""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
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.
Ok..so I am soooo excited right now!!!
There is a Cushing's Clinic in Rochester, NY (not too far from where I live) but I couldn't get in because my Endo hasn't done a complete Cushing's workup or MRI yet. (By the way, my Endo STILL wont return my calls to discuss my labs or the possiblity of ordering more tests and/or an MRI!)
My Cushie friend just emailed me and said that she just spoke with someone at the clinic (she goes there) and explained my situation and that I can
Hi Carolyn here I had a pituitary tumour removed 20 months ago and am now on cortisol replacement would love to here from somebody who is also doing this and how they manage it. Nobody around here has even heard of Cushings and the doctors are not a great deal of help either considering I had been to every doctor in our town over the 9 years from when I first started getting symptoms and they all palmed me off as a neurotic. I take 10mg in the morning 6 at lunch and 4 at around 6pm stressing wit
Hiya everyone! How are u all doing? It's great to be back - it's been a year since I last visited here. At that time I was suspicious I had Cushings Disease from all my symptoms.
I am so glad I've come back because there really is no support like this forum. I would love to hear from u all.
My story is I am 23 years old, female, robust health up until 2 years ago. I first noticed the weight gain, the anxiety/depression and stretchmarks. It is not in my nature to be pessimistic
Ok, so I finally got a message from the Endo on my machine at home saying that she has my lab results and thinks I have Metabolic Syndrome because my insulin level was elevated. (it was 103). The thing I don?t get is that Metabolic syndrome is a group of conditions including
? High blood pressure (ok, this shoots up every once in a while lately, but mostly it is normal)
? High blood sugar levels (103 isn't really that high!)
? High levels of triglycerides (mine were 148, which is within th
My current diagnosis is secondary adrenal insuff and diabetes inspidus.
Here's my current list including the changes I want to make or just made:
Hydrocortisone (generic) 12.5 mg@ 7 am; 2.5 mg@noon; 2.5 mg @4 pm and 2.5 mg during/aftrer exercise (whatever time I do it)
acto-vial cortef 100mg Im in an emergency (I say this because I have had a bunch and some docs use dex for emergencies, does not work fast enough for me)
Prednisone 3 1/2 mg am 1 mg pm for five days after use of st
Well, I was off to a good start, then my blog kinda fizzled, but here are the highlights:
9/08 through 3/09 I had Five Pituitary surgeries. I am very fortune to live close to an amazing cutting edge nuero-surg doc. He is able to plane away small sheets of pit tissue until he finds the adenoma and then remove just the amount necessary to achieve a cure. Well, he did this on each surgery, unfortunately, I had tumor material all through my pit. The ACTH secreting adenoma was in the posterior p
I will probably need one before my journey is over.
My husband hates me, of this I am convinced. I don't know what else to say about it.
I know I sound crazy but I HOPE THEY FIND A TUMOR!!! Then maybe my husband will feel bad enough to start acting like the man I fell in love with.
Because hey..you cant be mean to someone with a brain tumor right?????
Ok so now I am feeling just awful!
Yester day at about 2pm, I started to feel so awful that I had to go home early from work. So at about 3pm I told my boss I didnt feel good and left. I could barely drive home, i felt like I was going to fall asleep at any second. I actually did for a second while stopped at a red light! (sorry to the guy behind me who had to beep at me) Anyway, I got home and layed down instantly on the couch and was asleep in seconds and ended up sleeping for 4 hours
I've always been an overly stressed person.
Recently I've been very, very stressed. More than I ever have been in my life. I will be sitting at home just watching TV. When suddenly I start feeling hot, uneasy, sad, and worried. It happens for no reason at all. But the real stress happens around midnight. I get so worked up about anything and everything, that by midnight I break down with an anexity attack. By 1 am its usually over and I can finally get some sleep.
Being summer, I don't
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
So, I had some blood work done yesterday. I wish I knew how long it would take to get the results back! (I forgot to ask). These are the tests that my Endo ordered;
? Comp Metabolic Panel ? Cortisol (this was a blood test) ? Hemoglobin A1C ? Insulin Serum
? Lipid Panel ? TSH & T4, Free ? Prolactin Serum ? FSH, Serum ? Estradol
Can I just complain for a minute? I did not feel that this Endo was listening to me and I am concerned that she so easily dismissed the po
Hello to any of you out there reading this. I never thought I would blog, but then again, never say never right?
Here is a quick background about me.
I am 41 years old, married and have 3 children who are the light of my life!
Aproximatelly 10 years ago after the birth of my 2nd daughter I went to my doctor because I kept getting sick all the time with respiratory infections and I was exhausted. I asked him at the time if I could possibly have an immune disorder because I was notic
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
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
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)
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
Made the appt. with Dr. F for next month. Counting down the days. Really committed. Bought the plane tickets. Made the hotel reservations. Wow! No personal pronouns in all those sentences. I guess I am just really excited to explain myself and be heard. I don't plan on taking anyone with me to the appointment. I do plan on taking a recorder. I feel like I can get anywhere I need to. Any thoughts on this? Are there any procedures that I need to have someone to escort me out of?
Hello, I'm new to this, hope I am doing it right.
I had been very sick for about 5 years when the doctors finally diagonosed Cushings Disease. It was a tumour on my left adrenal gland. The surgeon said the tumour was completely wrapped around the gland and he took both the tumour and the gland out completely. Anyway I was feeling pretty much about 85-90% recovered 2 years on, when just recently some of the old familiar Cushings disese symptoms started coming back.
The doctors have do
My name is Hollie. I am 32 years old, and I have just about had all I can take of all of this. My story is probably like about a million other ones out there, but when it is happening to you, you feel like you are the only person in the world with these problems.
My story started out with my doctor finding that my thyroid was a little enlarged and sending me to an endocrinologist. After some tests they discovered a small nodule on my thyroid. After some further tests they determined that it