kalatraz
06-25-2006, 01:19 AM
(I'm asking the Addisonion group even though I'm not a member. . .) I had pituitary surgery to remove an adenoma a month ago. Because my diagnosis was Cushing's disease, I was placed on Cortef to take until my adrenal glands wake up again. However, I suspect they're already awake as two separate 8AM cortisol and ACTH serum draws have been well within normal ranges. Yet my doctor wants me to wait 6 months to wean down from my 17.5 dose of Cortef.
I'm gaining weight and have extremely oily skin, ache, fatique, nausea in the mornings. . . could I be on too much Cortef?? I can't imagine needed more if my cortisol numbers are already so high.
If anyone has any clues of symptoms of too much or too little cortef, I'm all ears. Want to make sure I know what I'm saying when I talk to my doctor next week.
Meanwhile, I'd be happy to answer any pre-surgery cushing's questions.
Thanks,
Kalatraz
Karen W.
06-25-2006, 01:45 AM
Hi,
Yes there are side affects of cortef and you named them all. I would follow your Doctors instructions, you had surgery on your pituitary gland and that is pretty serious, I have a friend who had surgery on her pituitary gland, once she had the surgery, a day alter- she was actually blind of almost a year, her brain was so swollen and it put pressure on her optic nerve which causes her to loose her sight, once the swelling went down, she was able to see. Your body may go threw some changes yet, not as serious as loosing your eye sight-(that would have happened already), but it's better to be safe than have allot of problems, make sure you take your meds with food, that may help the sick stomach.
Karen
WandaB
06-25-2006, 11:36 AM
How are you splitting the 17.5mg & what times of day do you take it?
orion
06-25-2006, 01:26 PM
my diagnosis was Cushing's disease, I was placed on Cortef to take until my adrenal glands wake up again.
Since Cushing's disease means your adrenal glands are working overtime, I don't understand the need to "wake" them up?
Cushings can be very hard to cure so if you are having symptoms still, I would ask your doctor what he thinks is going on. If he is thinking that your surgery would knock out your ATCH completely, that is unlikely without radiation treatment as well.
WandaB
06-25-2006, 09:16 PM
I know 4 people with Cushings. A couple of them had the pit surgery, then had to have the adrenals removed.
I also don't understand what your doc is doing & you really need to see someone to help you who knows what is going on.
Take care,
Wanda
pursie
06-26-2006, 02:14 PM
hi can you please tell me the symptoms of cushings??? my test came back abnormal and i understand you get weight loss with cushings and weight gain with addisons??? anyone know sometimes i feel i have to much adrenalin and it brings on a pannick attack i can feel it in my bellie and my senses become to aware!! sight and colours etc and racing heart its the most scarey feeling in the world i ended up in a& e it was like an attack??? please can you help it also felt like i needed a poo and wee all the time lots of love from kat thanks for reading any help will be appreciatedxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxxxx
trakos
07-03-2006, 12:36 PM
The reason you have to keep taking the high cortef dose is that your body adapted to very high levels of cortisol (say 50 mg perday-thinking prednisone) while cushings. If you don't supplement with the extra cortisol and wean gradually then you sned your body into shock-adrenal crisis specifically. Even if the amount of cortisol your body is making is normal- say 5 mg (thinking prednisone). Your tissues have adapted to much much higher amounts and even normal amounts will not be enough and you could have adrenal insufficiency or adrenal crisis symptoms.
So you wean off gradually over 6 to 10 months to prevent adrenal insufficiency symptoms and allow your HPA axis and tissues to reset to more normal cortisol amounts.
Given all the cushings like symptoms may he could start weaning you a bit quicker as you seem to adapting okay.