Addisons Disease

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Hi, I have recently been diagnosed with Addisons Disease after being really sick for about 6 months, but sick before that for a few years.  I have started my new medications and finally I am able to eat and the vomiting has stopped and my skin already is starting to lose the dark tan look.   But one thing that is now happening is I am retaining a lot of fluid and I have a tingling sensation in my hands.  My endocrinology is currently on vacation as well as my family doctor and I am wondering why I am retaining all this fluid (like 8-10 pounds) of it and how to stop it from happening   I was on .01 of the fludrocortisone but the doctor told me to cut it back to half     And my hydrocortisone is take 15 mg in the morning and 5 at lunch and 5 at supper     Any thoughts  And thanks in advance   So happy to be abe to touch base with people who have this and to be able to chat about it   It is so new to me that I want to learn as much as I can  

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  • Posted

    Hi Tracey, that is one of the side effects of the hydrocortisone . Thankfully I never got that side effect. I'm on 10 mg a day 3 times a day. I have been on it for 7 years and it has destroyed my teeth and my eye sight but there isn't much I can do about it, I wish I had an answer

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    • Posted

      Hi Linda,

      I was finally diagnosed with Addison's one year ago and have been on 50mg per day for most of this time. I had no idea that it would affect my eyesight so thank you for sharing this.

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    • Posted

      I know. It went up to 100mg last November when I was admitted to hospital with Pneumonia and I've been battling since March to reduce the amount of HC but I get so far and start vomiting and am doubled up in severe pain. My Endo Consultant has suggested that I spend a day in hospital soon and have a Cortisol Day Curve to monitor what's going on. I really don't know how to reduce this high dose without feeling very ill. I am living on Cyclizine for nausea which does help. Don't know what else to do.

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    • Posted

      I've been on HC for nearly four years (20mg/day as 10,5,5) without any of these side-effects. In fact my eyesight has improved! [I have secondary addisons, due to inactive pituitary caused by an adenoma (= tumour). This had begun to damage my optic nerves causing loss of peripheral vision. Since I had it removed, my eyes are mostly back to normal.]

      HC seems to affect different people in different ways so best not to panic about other people's horror stories until you see what happens in your own case. The Addisons Society might have a help line you can call for advice until your docs get back from their hols. Never get sick in August!

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  • Posted

    Doctors need to retest renin and aldosterone. .just to see the levels how is your blood pressure?
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    • Posted

      My blood pressure still runs low but it is much better Thank you all so much for the comments. I am very grateful for this group
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  • Posted

    I suffer from water retention too, it is one of the many symptoms of Addison's.  You could try taking water retention tablets, they have helped me.  

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