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Addison's Disease Message Board


Addison's Disease Board Index


I have a wonderful Endo. She has helped me so much and is now leaving and moving to Washington State. Lucky them! She did tell me about the salt and I do eat extra each day. I found that I was so thirsty all the time even after diagnosis and have a water bottle attached to my hip. I don't go anywhere without it, I can't. I have always been a big water drinker but this is extreme. I find that taking in more salt curbs that a little. She has talked to me about many things and always takes as much time as I need to talk to her at my appts. I am gong to miss her! :(

I do wonder about daily living though and running out of energy by exercising, or if I miss a dose of Cortef what will happen to me? TI did it once so now I don't worry so much about it and I don't do it. I was out that evening trying to power walk and I kept feeling funny. I went home drank more water, stretched again and attempted another mile. I still felt funny so I came home and rested. Next day at work, I noticed my pill still in the Tueday box. Then I knew why I wasn't feeling right. I don't know if exercising is going to give me more energy like it used to or use up my medication so I have less? So far I haven't found that it is using it all up but I have not gone overboard either. The Dr. thought it would be ok unless I was running a marathon or excessive workouts.

I am sorry I am getting carried away here!
I am so happy to have found this site. :)



[QUOTE=making777;3024177]Diane,

Yes, we understand how you feel. Many of us feel the same way. I am glad that you are now diagnosed and are on the way to feeling better. :) Did you get much teaching about AD from your endo? One thing I noticed is that there seems to be little teaching regarding how to live daily. I did a lot of research on the internet, and am feeling a lot better, now that I have hit my balancing point and seem to be staying there!

Did they tell you that AD is a salt wasting disease, and that you need to up your salt intake? I have a cup of chicken broth every morning to start off right, and it helps quite a bit. If I forget, I find myself in a mental fog at some point in the day, then I remember that I forgot my broth. Some people take Florinef to help with the sodium absorbtion. Has your endo prescribed it for you?

I hope you find this place to be a nice refuge for you. I only know of one other site like this, and I am thiankful for both! Both have been enlightening and encouraging for me.

Blessings to you, and I hope you are on the mend now,
MaryAnn

BTW - I have had the official diagnosis of Adrenal Insufficiency for about 10 months now. :)[/QUOTE]
I didn't realize I was unwell for a long time. I have 4 kiddos and a very busy lifestyle, so I just figured I was being lazy when I was exhausted. I am a good 'ignorer' of myself, so I just kept going without thinking about how I was feeling. When I did begin to pay attention to my health, I was able to get to right doctors right away, being familiar with Addison's, and after a few visits was finally tested! It's just nice to have something which reveals you are sick, when you look fine! :p

But now that I am more aware of this disease, I feel I have more to offer the world, as a nurse. I am hoping to find this disease in people who suffer needlessly for a long time, so I do as much research as I can to alert the MD's (who never really think endocrine unless it is blatantly obvious!)

BTW, can I ask you if you had the 'tan' symptom, the hyperpigmentation which is prevalent with most Addisonians? I am curious how many people do not present with this (I didn't, but I am 1/2 asian so it might be difficult to tell on me). Just curious!

Enjoy your power walking!:wave:

MaryAnn
Diane44

I am from the Madison area. Nice to know someone else from this great state is in the same boat as me. My endo told me that this disease is quite rare. I too started out very sick and was finally diagnosed after going through vomiting and diarhea, not eating for 2 weeks and not being able to get up off the couch. It is a horrible disease till they find out what it is. I started out on 25mg of cortef then lowered to 20 and I lowered myself down to 17.5 cause I was still gaining weight. I haven't checked with the endo to see if this is ok. She just uped my florinef to .1 daily due to some test results also. Crazy thing is I have not experienced the need for salt like alot of you guys do I had the "tan" symptom, that's what tipped my endo off first thing and then she did the other tests. I don't have much energy for exercising, that's probably why I still have the weight gain, especially in the middle area.
Nice to have you on the boards.
Hi Cruiser,

It is nice to know there is someone else in WI! I get to Madison a few times a year for business meetings. Usually in the early spring and then late fall. I enjoy my time there.

I went through a lot before being diagnosed, salt cravings, eating nothing for about two weeks also except pickles, pickles and more pickles, oh, and Ramen noodles, lots of salt in those. I could barely move anymore to get up so I stopped doing that too. I stopped showering, it was too much work and made me Sooooo sick. I also would have so many muslce spasms and Charlie Horses and couldn't breath due to the drop of BP when standing. I couldn't think or remember anthing anymore. I was told I did not have one drop of cortisol show up on my test so I was nearly a goner. Seems that most of us were to this point before being diagnosed. I did have the really really dark tan. People would comment on that often. "Oh you look so tan were you on vacation?" I would say, "Yes last January (which was 2006) I was in Fl and got an everlasting tan." I wonder how I could be so naive as to not realize that this tan had to be to good to be true! I never ever noticed the darkening of the creases in my hands or feet either.

My Endo said that I should not go below 15Mg of Cortef daily. She said I could try the 17.5 and as long as I felt good then it was ok but if I didn't then
I should stay with 20. I tried 15 but went up to 17.5 and almost think I need to go back to 20. I feel good but am far to tired in the morning, getting up is hard as heck. How much sleep do you or anyone else reading this need? I can't seem to function on less than 9 anymore.

I can't lose weight no matter how hard I try and that makes me sad. For as sick as I was I looked good then. :-) Now, well I am still ok but sure do wish I could lose these 22lbs I gained. Cortef - puts weight on in the middle....I have some of that too.
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?

Diane44
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]
:) 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:
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. :)
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
Hi all,

Oh my gosh I am so sorry to hear how sick you are! I am very fortunate to be so healty for as unhealthy as I am. Karen I went to Rochester in Mayo, that is where I was diagnosed. I was sick for months, wnet to so many Dr. apts. and nearly died. Then I was sent to May and within 10 minutes of being in the room with the Dr. he knew what was wrong and had me taken to the ER immediately. Not every Dr. will figure it all out that fast but they have some very good Drs. there. I have been back to Mayo a number of times for check ups and they have been wonderful there. I am only 2 1/2 hours away though, not half a world, so it isn't so bad getting there. If your Dr. would like you to go there though, consider it seriously. Maybe they can help you. Do you have someone who can come with you?

Congrats on the new man in your life. I wouldn't tell him everything right away, first feel him out to see how he is with what he knows already. He can learn the other things as they come, if you tell him all of it right away it might scare him off but, if he has time to get used to them a little at a time it might be easier for him to handle. (Just my opinion.) I don't mean lie to him because that is never a good idea, just let him in on it a little at a time so he has time to adjust. If he loves you or is the one, he will be able to handle it. (again JMO). Maybe others have some personal experiences to share in this area and that may help you too.

Do you or does your Dr. think that your brain tumors could in anyway be causing some of your problems?

Oleqwilter, I had brain fog, muscle and joint pain and a lot of other things going on until I went on Cortef. That is what took my syptoms away. I was on synthroid for many years until the insurance company required I use the generic brand which is levothroxine. I had an over and then under acitve thyroid. I was really tired and my hair fell out easily but that is all I remember of symptoms cause by my thyroid. I am glad that you are doing better. I started out on 25mg of Cortef a day but am now down to 15 and so far so good. If I need more I can take it but they highly recommended taking the lowest dose possible and staying under 20mg daily. I am so glad to hear your bone loss isn't much, I think about that often and wonder how fast it happens and what I can do to stop it aside from taking less medication because that isn't an option. I will talk to my Dr. about Evista and see if it is right for me too.

I started out on the generic Cortef so do not know of any problems with it. It worked really well for me.

Wishing you all a wonderful Sunday and praying that you feel good.
Diane44
Hey all

I hope today has been a good day for all of you, I finially took a shower, ha. the frist one since Thursday monrning, I always take one every day, I even wanted to go to church, but somehow I just didn't have the energy if you all can hear where I'm coming from. I am on 33 med's a day, my Dr's say that I have a number of illness that could keep me from waking up in the morning. I try to fight as much as I can some days my body just shut's down and I have to sleep for two or three days to let everything build back up, or so that my say about it. Yes they put me on Fludrocortisone 0.1mg and on Prednisone 5mg. I've had to stop them, now my blood pressure is 93 over 58 before I got my pacemaker my heart rate was 28 to 35 for the month I was out of the hospiltal. My Dr. told me none of my glands were working, I also am a Dibetic and have fibro and many more problems. Hope you all are havine a good day.:angel:
Hey all

I hope today has been a good day for all of you, I finially took a shower, ha. the frist one since Thursday monrning, I always take one every day, I even wanted to go to church, but somehow I just didn't have the energy if you all can hear where I'm coming from. I am on 33 med's a day, my Dr's say that I have a number of illness that could keep me from waking up in the morning. I try to fight as much as I can some days my body just shut's down and I have to sleep for two or three days to let everything build back up, or so that my say about it. Yes they put me on Fludrocortisone 0.1mg and on Prednisone 5mg. I've had to stop them, now my blood pressure is 93 over 58 before I got my pacemaker my heart rate was 28 to 35 for the month I was out of the hospiltal. My Dr. told me none of my glands were working, I also am a Dibetic and have fibro and many more problems. Hope you all are havine a good day.:angel:
Hello all. My mother has Addisons/Schmidts Disease. She was diagnosed over 40 years ago. She is now 66 years old and has been realitively healthy, until last Tuesday when she came down with that horrible stomach virus that is going around. She had the dry heaves, vomited once and 2 episodes of
diarrhea. By the time I got her to the ER her bp was 89/46. The vomiting as stopped she is still nauseated and lots of diarrhea. The doctor took her IV out yesterday (big mistake) Today she was fading fast they put the IV back in and started her on IV steroids again. ANYWAYS--I just wanted to let people know you can live along time with this. She posted here quite sometime ago but never got back on. I wanted to because I am interested in how many people are out there who have had this disease for this long. When she was diagnosed she was told she was the 16th person in the world with this. I wonder if an aging addisons patient has different needs. I would like her labs tested and her doctor told her he could not check her cortisone levels. I found that hard to believe. I would like her to go to a research hospital and see one of thier doctors just for a 2nd opinion. She lives with me so I can keep a close eye on her. I know I will have more questions as I read peoples stories but I will start with this. Thanks for reading!





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