Really worried about trembling body - Addison's Disease Message Board

linzi105pink · 03-15-2008, 11:25 AM

I was diagnosed with addisons disease just over a year ago. I take 20mg of hydrocortisone a day. My problem is that I am constantly shaking all the time, both my hands and arms constantly shake even if I am not moving. Just lately the rest of my body has joined in. If i sit on a hard chair i can feel it more and in bed i can feel the bed shaking underneath me. The other day i thought that my phone was vibarting in my pocket, but it wasn't it was just me. I'm really getting worried about this as people are starting to take notice of it. I've spoken to my Dr and he said it's the medication, I spoke to my consultant at hospital and he say's things like this just run in familys but I'm not happy with either of those answers. If it is my tablets then this is for life and may get worse. I'm just wondering if anyone else has these symptoms and if the have any answers for me !! I would be very gratefull.

rumpled · 03-17-2008, 09:14 AM

Some of my Cushing's friends have had this issue... have you taken a 24 hour urinary free cortisol test ON medications to see where you fall - to see if you are too high or too low? How do you divide your doses?
If the steroids seem to be in the ok range, perhaps you need to see a neurologist.

linzi105pink · 03-17-2008, 10:58 AM

No i havent done that test. But I had a day at hospital last july to monitor my levels and they came back fine. I take 10mg when I first get up then 5mg at 12pm then 5mg at 3pm. Sometimes I get energy rushes at night, and especially if Im doing something fast. ie like cleaning up fast. My nurse thinks their mini panic attacks.

I have a benign Tumor on my pirturity gland, which i was told is 5mm. I had a MRI scan in december and they never contacted me to give results. So i'm hoping that it's ok.

rumpled · 03-18-2008, 06:41 AM

Your cortisol could be rising on its own at night - which is giving you the panic/energy...
When I had cyclical cushing's, my cortisol was super high only at night, and super low during the day - the 24 hour urine test was overall normal. The 10 hour UFC (10pm to 8am) was high. You need to test at night with urine, saliva or blood to see what is going on... but 6-8 hours after your last pill...
Most pit tumors are benign - so what - that does not mean anything - you have to find out what it is secreting. It can still be doing damage. I had two "benign" tumors on my pituitary and I am disabled due to them. Your doctor is not doing you a favor - find another. You need comprensive testing of all your hormones.

linzi105pink · 03-18-2008, 03:58 PM

This does worry me. I have made a appointment to see my consultant next week. Im going to tell him everything and if I can get no sense from him then im gonna see about going private.

My energy rushes are mostly at night. And if im excited about something- like I bought a new car and was so excited, but had to wait a week to pick it up-..all week i was on a constant adrenalin rush, it was really weird, ive never experienced anything like that before.