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cruiser8892 06-05-2007 07:05 AM

Re: I have recently been diagnosed with Addisons
I too have a terrible time getting up in the morning and it doesn't seem to matter how much sleep I get or how much cortef I take daily. I usually try to get at least 8 sometimes more, sometimes less depending on schedule. I also have hypothyrodism which doesn't help with the tiredness. My levels seem to be going up & down with that too. It's good to know that we can be ok on the lower doses of cortef. I don't think I will go lower than the 17.5 till I go back to my endo again. I was there recently in May and had the renin plasma testing done and that is why she had to increase my florinef. I am still learning about this disease, thank goodness for the medication. I still don't understand how your body does this to itself. I just keep thinking of how life was before diagnosis. Don't want to relive that again.

I really have to watch what foods I eat to keep from gaining terribly. I lost 13 pounds before diagnosis, and I have gain all that back along with a few more. I can't seem to lose those few more that I gained and it seems like alot more than what the scale actually says. It is stuck right around the middle. I'm glad that there are other people with the same dilema.

I'm glad for the support from the others on this board. They are very helpful and informative.

Diane44 06-05-2007 07:11 AM

Re: I have recently been diagnosed with Addisons
I too am very happy for this board. It is what I have been looking for. Sounds like you and I are going through a lot of the same. I do not want to go back to how it was either! I am so happy to be healthy now!

I had lost only 4lbs at the end but over the year before I had lost 14 so a total of 18 and have gained back 22. I posted another thread asking about that and any help with getting this back off.

I am glad you are here.


jennyjen 11-29-2007 06:15 PM

Re: I have recently been diagnosed with Addisons
My brother has been extremely sick for the last 3 years. Did anyone of you have extreme stomach cramping?

oleqwilter 01-19-2008 01:56 AM

Re: I have recently been diagnosed with Addisons
i was diagnosed with addison's disease in 1972 and have had a wonderfully normal life. I have had 2 children and worked full time on many occasions. I was primarily a stay at home mom for the time my children were young. I live in Northern IL and woul be happy to answer any of your questions.


Diane44 01-19-2008 01:21 PM

Re: I have recently been diagnosed with Addisons
Hi oleqwilter,

I am feeling so good now, I have a very normal life again and am quite healthy for as unhealthy as I am. I do have a question however about weight. Do you or did you have any problems with that in the first year? I have tapered off now on the gaining and stay about the same within a pound or two either way. I would like to be able to lose some and have had such a hard time of it! I work very hard at it and eat very healthy but am still about 27lbs overweight. Not a lot I know but enough that it bothers me. I am able to workout and do that too on a regular basis. Any ideas?


crystal129 01-19-2008 09:45 PM

Re: I have recently been diagnosed with Addisons
Hi Diane44. I have been diagnosed with AD for 11 years now, but I'm new to these message boards (I never knew they existed). It is great to talk to other people though and realize all of the different ways the same disease affects different people.

I have a very difficult time losing weight too. I am in a very similar situation because I would say that I am about 30 lbs. overweight. I don't have the "moon" face, but it's all in my stomach. It probably took the first year or two before I leveled out and stopped gaining. Hang in there. Just make sure that you keep yourself healthy the best that you can. :-)

kareng45 01-20-2008 04:29 PM

Re: I have recently been diagnosed with Addisons
I have addisons since May. I had to have a pacemaker in June. This is all confusing. I was having many symptoms and they diagnosed me with addisons in May. I didn't even know what it meant and still have alot on trouble understanding it. If you can help me, I would appreciate it. I lost 58lbs. also. Still have alot of trouble keeping food down. I have many other diagnosis wrong with me also.
I am also new to this support group and I am not sure how to use them. If you could help me in learning how to use this message board, I would appreciate it.
Thank You,
Hope you are feeling better today.

Melk86 01-21-2008 07:36 AM

Re: I have recently been diagnosed with Addisons
I can't tell you how happy to know there there are other people that were as sick as I was.
I was hospitalized in September 07 because I couldn't keep food down for three days and I could barely walk. then in december 07, my doctor put my in the hospital. We knew I had to get there, so she said the reason was dehydration. But by that point, I couldn't stand for a minute, I'd be crawling up stairs then resting because of exhaustion, my blood pressure was 50/40, I wasn't eating much if anything. The hospital loaded my with sodium for about a week. The worst part was that the hospital was so over crowded that i spend a day in the hallway (2 different ones.... they moved me), 4 days in a holding room waiting for a room then back into the hallway.
I'm so greatful that they found out what it was, the doctor said I didn't have much time left. Even my mom knew, she'd come in every morning just to be with me. A lot of us thought this was it.
I'm sure a lot of you can relate, I'm just so happy that there's other people with this. It sucks, but is comforting

[QUOTE=Diane44;3023318]I have been diagnosed since February 8th this year. I was sick for a very long time. My story is very similar to those I have read. Months upon months of being sick and going undiagnosed until it is nearly to late. I had no BP and no pulse that the Dr. and nurses could find at my first appt. with a specialist so they called an ambulance to take me to the ER. I spent 3 days in the hospital which isn't long given how sick I was and for how long. I was in crisis and had started to vomit at that time. The Endo. I saw did diagnose me before the ambulance took me away so once in the ER they made quick of fixing me up. I was in the ER for 8 hours. I am so grateful to be feeling better and know that I do not have Firbromyaligia (I never belived I did) nor am I crazy. I really was sick. I feel good now although I tire more quickly than I used to.

I am looking forward to reading the board and learning from others experiences. Making frieds. I feel kind of alone sometimes which I assume is quite normal. I have much family and we are close but no one with this disease that I can relate to and that is the lonely part.[/QUOTE]

kareng45 01-22-2008 09:01 AM

Re: I have recently been diagnosed with Addisons
:) Hello oleqwilter, I have alot of ?'s about Addisons and the med's, the ones that they put me on and say I have to take seems to make me even sicker, so I just don't take it, however I have been in and out of the hospital every month it seems like. I do have alot of other health problems also so I don't really know for sure when it's the AD or the other ones until I get to the hospital so if you could help me understand AD and what kind of foods that I need and what med's your on if any I would like to know and have someone help me. Thanks so much, I'm very glad that I found this message board, I didn't know what to do or who to talk to about it, as I'm the only person that has it, that I knew of until I found all of you. Hope you are feeling good today. Kareng45 :angel:

oleqwilter 01-26-2008 12:08 AM

Re: I have recently been diagnosed with Addisons
My weight was very stable after diagnosis. I was younger and more active. I had lost 50 lbs in the 2 or more years before I was diagnosed. When I was in the hospital and had the acth stim test Ilost another 30 in 10 days. When I was finally able to be up and around I stabilized at the weight I was before I was diagnosed.

Unfortunately, 2 pregnancies, not enough will power and hypthyroid have wreaked havoc and I am gaining weight and have to loose was too much. I am having trouble with this despite the fact that I should be motivated to be a beautiful mother of the beautiful bride.

Sorry I took so long to respond. I have been having a week of not feeling very well. Have no idea if it is Addison's or what.

Let me know if you have any more questions.

oleqwilter 01-26-2008 12:10 AM

Re: I have recently been diagnosed with Addisons
sorry I forgot my meds... I take 30 mg of cortef in the morning and 15 mg in the afternoon. I also take .1 of florinef daily. I am also on synthroid.

I take evista because of the longtime steriod use. I have not lost much bone, but am trying to keep it that way. I have been taking steroids since 1972

Diane44 01-26-2008 08:45 AM

Re: I have recently been diagnosed with Addisons
Hi all,

I truly enjoy reading what everyone writes, sounds odd I know, but I am glad you are all here. We have all gong through a lot and have similar stories to tell. I am glad that you are all here to help me too. I am going to try diet and exercise again to lose weight. Anyone ever try Hip Hop Abs? Sounds like fun to me so I am going to start there. I like to dance but am really bad at it. I will only be able to do what my arthritis and Addisons let me do. When it hurts too much I have to stop. I really want to lose some weight.

I have never heard of Evista, what is it for? Boy am I happy to hear that you have been on steroids for that long and it has not affected your bones too much. I was a bit worried about my future and how long before it would affect them. My dad was on Prednisone for a few years due to emphazema and he broke his ribs just rolling over in bed. I am on Cortef and florinef but still sterioids to worry about. I also take levothyroxine for thyroid, Clarinex for allergies, alleve for arthristis, Ranitidine to help my stomach with all the other med I take, calcium, fish oil and Dhea as supplements and use Dovenex for my psoriasis. I tell you it is almost impossible to remember to take all those pills at the right time of day! I do it most of the time without missing one but every now and then I forget..............wonder if it is the addisons? ;)

Oleqwilter you are on a lot of Cortef, I am not a Dr but from what I have learned and been told that is too much for your body and will cause more damage in the future. I guess it could be based on weight and I don't know how much you weigh but I have always been told by every Dr I have seen that 20mg a day is plenty. I am on 15. Have you been on that hight a dosage since 1972? If so then you are lucky to have no other side effects. Please do some research on that and talk to your Dr. I would hate for you to be having side effects because the dosage is too high. That would only make things worse.

Kareng45 you have to find a medicine that doesn't make you sick. You will die without it. What meds have you been on? Cortef or Prednisone? Florinef? Florinef is very important if you have low BP and that can make you sick. It might not be the meds that are causing you to be so sick but maybe you are not on the right combination? Karen just keep writing and people will respond, sometimes it takes a while but they do. This is a great place to be when you have Addisons. Sooo much helpful info.

Hope you are all doing well today also. :)

oleqwilter 01-26-2008 07:31 PM

Re: I have recently been diagnosed with Addisons
Acutally I mis spoke I take 25 mg of cortef in the am and 15 at 4 pm. I took cortisone acetate for the first 24 years. Then because of production problems I took prednisone and several other steriods. I went to a new endo because of brain fog, muscle and joint pain. He switched me to Cortef and put me on thyroid meds too. Immediately the symptoms went away. But I don't know if it was the cortef or the synthroid. Evista is a medicine for bone loss. I am still way in the normal range for a 60 yr. old woman, but I intend to keep it that way and so have been taking the Evista. We played with the cortef using blood tests and symptom relief to adjust the meds to the current level. I believe I started on 20/10.

Has anyone had trouble switching to generic Cortef. I did within the last couple months and I am having dizziness, fatigue, muscle pain. I am wondering if it is because of the generic meds.

Thanks in advance Oleqwilter

kareng45 01-26-2008 09:01 PM

Re: I have recently been diagnosed with Addisons
Hello, I to am sorry for not getting back with you or even been on the message board. I have had three really bad day's, yesterday I hurt so bad and could hardly walk by myself. I don't know if it was the Addison or the Fibro or any other of the many health problems I have. My Dr is trying to send me to the Mayo Clinic in Rockchester {half way across the world} or for me it is, I didn't even feel like having the CT text done and had to put it off till Tuesday. I also have three tumurs in my brain, I have lost more weight and I'm not sure what is the cause of it this time. Some day's are not this bad think goodness. I try so hard to live a normal life, what ever that is,lol. I don't go around and tell people about my health stuff. I have been sick for so long and have been to so many Dr's one for one thing and one for something else, I guess you know how it is, now this mayo thing. I'm just not that sure about that, it's so far from home. I was just wondering how long it took you to level off, I don't want to gain weight and everyone is on to me now about my eating. I just get tired of it all, what I meant by a normal life, I have been dating a really nice guy, for the frist time in years. He is a cop of 23 yr's however, he doesn't know that I'm as sick as they all say I am and I guess I'm alittle bit afraid to tell him. Anyway if you have any advice for me I would really like to hear it. I'm about to pull my hair out and I'm tried of crying, that's not really like me either, but now there having home health and hospice come, starting Monday and I guess I let that get me down when I woke up hurting so bad that morning, well later. Thanks for taking the time to read and ans this. Kareng45

tamiam 01-26-2008 09:33 PM

Re: I have recently been diagnosed with Addisons
Karen, So sorry to hear about all the trouble you are having. It sounds like your doctor is on the right track sending you to Mayo. They can do some amazing things there. I was diagnosed last spring after having all the symptoms for 2 years. It started with passing out in the shower. Sometimes I wonder about the diagnosis-- I have never shown to be low on cortisol, although I am low on aldosterone. I had symptoms of having too much prednisone once I started taking it, so I am on a low dose but take a normal dose of Fluorinef. Did anybody else out there start with just being low on aldosterone?
It is great to find a place where other people know about this crazy thing called Addison's.

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