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    Old 08-19-2013, 11:54 AM   #1
    hyrule
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    Talking hot flushes

    Hi I live in England and have been diagnosed with primary Addisons for 3 yr, and had a partial thyroidectomy due to a growth which was diagnosed as inconclusive. I cannot bear the fact that I overheat at the slighest bit of exercise. If I get stressed my face burns and I feel very hot. There are only 2 people where I live with addisons myself and a nurse at my hospital. Now my legs and feet keep swelling and burn at night. I am 92kg I have put on 3 stone due to meds but the endo can't regulate my meds as my cortisol keeps dropping and have had an addisons crisis 2 months ago. Got to A&E but the docs did not know what to do as addisons is rare I'm my area and my specialist was away! Ifelt alone untill I found this site now I know what I am going through is not unusual but I noticed on all other sites ( other than uk ) your meds are different not sure why. Wish people knew what we went through!

     
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    Old 08-27-2013, 04:09 AM   #2
    ElenaB
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    Re: hot flushes

    Hello,

    Im a 20 year old Nz'er with primary addisons since I was 8. Just wanted to say I relate to you on the heat flushes - when I'm stressed, exercise, centre of attention, or just randomly! I don't cope very well in hot environments either, I get very fatigued, drowsy, and light headed. The hot flushes happen mostly in my feet in the evening/night (though can be anytime) and seem to come on quite suddenly and make me feel almost panicky because I can't escape it. The best thing I know to do is put a cold flannel on them or even just wet them and let them sit out in the air - always have to have a gap out my blankets to stick my feet out! I can't really offer any suggestions for what to do (keep hydrated? wet cloths?) or even why it happens, just wanted to make sure you knew you weren't the only one
    I'm always surprised at how little medical professionals know about Addison's... I always hear it referenced in medical shows (haha) you'd think it was something they should learn about. I suppose that even if they know about it, its not much use if they havent actually ever treated anyone with it due to such few numbers of us, so I guess they just are unfamiliar with what to do. A quality specialist to advocate for you makes all the difference.
    And what meds are you on? I gather most of us are on either hydrocortisone or prednisone along with fludrocortisone for most. I wasn't aware that UK used different meds?
    Best of luck

     
    Old 08-27-2013, 12:32 PM   #3
    hyrule
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    Hi ElenaB

    My name is Anne. I am glad to hear from someone like me. You are quite young and I don't envy how much you will have to go through for the rest of your life. As I said I am 43 and was diagnosed 3 yr ago after being at deaths door. I am on 15 mg hydrocortisone 15 mg morning, 12 noon and 5 mg at night. I take 100 micrograms of Fludrocortisone am. I have recently been diagnosed with asthma (COPD) and carpal tunnel syndrome. I have 3 lesions on my legs which my endo thinks is something to do with the swelling and they burn when I get hot. Like you any stressful situation I burn up any slight exercise I burn up. Am having full bloods done on Thursday, my 7th lot this year, I had 52 sets last year. My knees have become bone on bone but have been told too young for a knee replacement. I am on morphine patches which my body keeps rejecting! Its a no win situation. I will try your method of cold towels because having size 8 feet my shoes don't fit because of the swelling. Take care, great to talk to you. Idont fell alone now!

     
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