Cushings Disease User Group
im a cushie
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High Cortisol and ACTH levels

Founded by LaDonna527 on July 8, 2013
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im a cushie

Hello everyone, i am new to this site, but anyway, i have cushings disease, i had my tumour removed in 2009 and have just been told by my Doctor that i may have another one.
just wondering is there anyone on this forum who also is a cushie and would like to talk about it.

Hey :)

im also new to this site. Ive just been diagnosed with cushings after as im sure you know, lots of testing lol.

Im booked for surgery on 21st march !

Have you had any further news since posting this?
no news yet, going to specialist in a week. having all the tests again and an MRI.
dont worry about the surgery...its not too bad. just look ugly for a week LOL
what symptoms do you have?

dont you just love how long it all takes just to get to the surgery stage...pfft im so over it .
well good luck with your op. and keep me updated on how you went.
dont stress about it...these doctors do these surgeries all the time.
Symptoms !!!

Well i dont know whats related and whats not but i have Unstable high blood pressure, unstable blood sugar levels, Fatigue ++++ im like chronic fatigued, sore muscles, get cramps way to often in places you would never believe you would get cramps. Sore Joints from lower back/hip, knee, ankle and fingers.
Headaches, sore eyes, vision gets blurry, Poor concentration span, foggy brained, cant think !!!, cant handle stress at all !!! Irritable. My Upper Abdomen has grown Sooooooo Much yet ive lost weight on the scales. Soon none of my clothes will fit me. My face has like an extra roundness to it, like extra wings on the sides lol ( sounds weird but i dont know how else to describe it.)
Ive had  a gland come up and go down again several times under my chin and i have angiodema in my left arm ( feels weird, tight, tingly and almost double the size of my other arm)

Im sure thats enough symptoms to have to deal with :)

Im sure some are cushings, some are related to my unstable Blood pressure and some related to my unstable sugars

I am doing al my tests again tomorrow ( urine, saliva, dexa suppression ) as i think my endo is either paranoid and just wants to recheck, or who knows pre surgery lol
yes i am currently undergoing all those tests as well...i feel for you , as i know how you are feeling. i had to wear maternity clothes because of the big belly, very embarrassing. i feel like a big fat heifer.
not able to cope with stressful situations will never go away...even after surgery you will get stressed easily. so you have to keep that in mind all the time , and try and keep away from people and things that stress will be different for you...but you have to put yourself first.
i am really over all these tests and surgeries...i cant keep a relationship as i have no libido,  i feel very alone with this disease. and i expect that you do as well. no one knows how we feel, not even doctors can relate as this disease is so rare.
try and keep your chin up and look after yourself.
keep in touch if you need to off load your feelings at all. i get you :)
might be an idea to see a councilor too. i have realized this very late...even tho they don't understand , you can off load to them and it is confidential.
and yes...all your symptoms are related to Cushings. Hard to believe that all this crap happening to our body is this one disease.
I had my surgery. I'm now 3 weeks post op.
They ended up taking out most of my pituitary gland. They only left a very small piece that attaches to the stalk leading to the hypothalmus. They couldnt see any tumor as such and sent off a section to be checked while i was in surgery. It showed I had hyperplasia of the ACTH cells. So they removed pretty much the whole gland.
Honestly i dont remember most of my hospitalisation at all. I only know what my sister told me. She is the general manager of the Neurosurgical department where i had my surgery, so she was able to stay with me most the time and she talked with the team to get updates.
She told me the surgery took approx 5 hours, i was then in recovery for approx 5 hrs as i had uncontrollable vomiting. Also with in 1 hr of the surgery i developed Diabetes Insipidus. I was passing 900 mls of urine every 20 minutes and they were pumping fluid into me as fast as they could to keep up.
I was in the high dependency unit for 5 days and was in hospital for 11 days.
I had a CSF leak during the surgery and had a fat graft taken from my rt thigh.
In the first week post op i developed hyponatremia and hyperkalaemia.
Lots of things has to be stabilised.
I know i also saw the occupational therapist and speech therapist, but i cant remember what they said or did.
I also saw an ophthalomogist as i have blurred vision in my rt eye. Im having more tests done on my eyes this monday.
I have been home 11 days now. Im still sooo fatigued !!!! My body says i need sleep so i sleep. I go for a VERY short walk and get back and collapse on the bed. I feel like i should be able to do more by now, but i just cant !
Im seeing the endocrinologist on monday as well. Maybe they will have some advise for me :)
Im hanging in there. i guess i just have to continue listening to my body and hope it all gets better with time :)

I know what you mean about others not knowing how we feel. My partner was expecting me to have the operation and be back to normal with in days. Now im so fatigued he's like, so whats going on now?

i told him my hormones are all out of wack and its going to take time to stabilize them. he's like, yeah yeah. I think cos i dont have a big bandage etc i dont look like ive had major surgery so i should be 100% by now !

I did speak to a psychologist last year, but that was while i was going thru all the testing. And once she realised it wasnt a psychological problem causing my inability to handle stress and was more a physical problem, she kind of handed me off and said she didnt need to see me anymore ( never mind if i needed to see her lol, well i decided with her attitude i didnt need to see her ).

Hmmmmm so coping with stress will always be a problem???
I have a well what i would call a semi stressful job. I do over the phone triage ( including suicide calls which can be very stressful). I havnt worked since this all started ( it started with me not being able to handle stress like i used to ), and i decided back then not to make any decisions til i was feeling better. But if im not going to handle stress that well i may have to think about a less stressful job. May have to go back to pathology work. I enjoyed that, no stress there :)

Oh well im still not going to make any decisions just yet :)

Sorry for rambling on.....its actually good to put some of this stuff down its kind of like talking it out with someone :)

It does help. Thanks for letting me ramble :)

And same to you....if you need a sounding board!!! Im here for you too :)
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