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Addison's Disease Message Board
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Old 11-27-2011, 04:53 PM   #1
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coffeemommy HB User
Am I the only one?

I have addison's disease and was diagnosed about a year and a half ago. I feel tired, dizzy, sick or achey almost more than I feel good. Especially in the evenings. My question is, is this normal? I thought with addison's I would take the medicine and live a perfectly normal life for the most part. I just want to know if there is anything I can be doing to feel better or if this is as good as it gets. I have 3 children and a husband who I am sure would like a mommy and wife that has energy and isn't always run down. I feel guilty and frustrated, to the point I am writing on this site. My doctor is deciding whether or not to put me on a medicine called flornef because my pulse is almost always over 100. During stressful times over 120-130. Can anyone out there relate or give me some kind of hope here. I'm so over it! Thanks

 
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Old 11-28-2011, 06:03 PM   #2
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SlinDependent HB User
Re: Am I the only one?

I am a 27yr old male, and I have Addison's as well. I take hydrocortisone, which has done the trick for me. I felt just like you did before, and since being on my treatment (now almost a year) I feel completely normal. However, since the source of this disease is endocrine system/pituitary, if you are not feeling better after that long after starting treatment I would suggest checking other key hormones that could be off. For me, I am also have type 1 diabetes, and hypogonadism, as well as b12 insufficiency and have to supplement these as well. Perhaps you might want to have your Dr run some other tests to check other pituitary related hormones to see if they could be off. A fluctuation in any hormone could be the reason you are not back to your normal self!

 
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Old 01-20-2012, 03:46 PM   #3
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Join Date: Aug 2011
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lopingdeer HB User
Re: Am I the only one?

Florinef is to supplement Aldestarone. (sorry spelling) he wants to put you on it to replace what your body does not produce. I have primary Addison's, and take it myself for that reason. I was DXed at 17. and am now 57. Once I got put on the correct meds, and dosage, I felt much better. It can be a somewhat long process, but it should get much better. I have live a very "normal" life. I've had some problems, but nothing that couldn't be dealt with. Hopefully by now everything is much better.
love, Karen

 
Old 01-21-2012, 01:52 PM   #4
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Join Date: Aug 2003
Location: California, USA
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gettin' better HB User
Re: Am I the only one?

My life has completely changed since I was diagnosed 8 years ago. I used to be active, outgoing, busy and fun. I am now overweight, sluggish, tired, not motivated to do anything, and some days I wonder why I am here. I have panhypopituitarism and take about 15 pills and medications. I am also a Type 1 diabetic. My endo (at a major university) keeps a close eye on me and says my hormone levels are where they should be. I am resigned to having to live like this. I don't like it, but I think all the medications (i take anti-depressants too) are making me a zombie. I know there are many success stories with AD, but I feel my quality of life has suffered and will remain this way. Don't blame you for being fed up. I am, too. My husband and I have had the "is this as good as it gets?" conversation many times.

 
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