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Diane44 05-31-2007 02:31 PM

I have recently been diagnosed with Addisons
 
Is there anybody out there who has been living with it for a few years?

cruiser8892 06-01-2007 06:44 AM

Re: I have recently been diagnosed with Addisons
 
Diane44

I noticed you're from Wisconsin, so am I. Where abouts? I have been diagnosed with Addison's for a year and a half now. Probably had it for awhile before knowing it, I was pretty sick for quite some time and could never figure out what was going on. Welcome to the boards and hope you find answers to any questions you have. This is a very informative & supportive group of people on here.

Diane44 06-04-2007 06:26 AM

Re: I have recently been diagnosed with Addisons
 
Hi, I am from New Richmond. You?

Diane44 06-04-2007 06:36 AM

Re: I have recently been diagnosed with Addisons
 
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.

chrisS81 06-04-2007 10:56 AM

Re: I have recently been diagnosed with Addisons
 
Diane how much cortef are you taking if you don't mind me asking.

making777 06-04-2007 12:26 PM

Re: I have recently been diagnosed with Addisons
 
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. :)

Diane44 06-04-2007 12:43 PM

Re: I have recently been diagnosed with Addisons
 
Chris,
I don't mind you asking. Do you have AD too? How long if so?

I have been adjusting the dosage a bit. I have a great Endo and she is so helpful. I started out with 25mg and gained about 20lbs. Dropped to 20mg and then dropped a bit more to see how it went, I now take 10mg at 5:45AM and another 7.5mg at 2:30 to 3:00 PM. This seems to be working well for me and I stopped gaining weight. I also had my Flouronef dosage changed at my last appt. due to test results, I now take .1 and then another half of that. I am feeling really good now so maybe that is the ticket?

Diane44 06-04-2007 12:59 PM

Re: I have recently been diagnosed with Addisons
 
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]

Diane44 06-04-2007 01:04 PM

Re: I have recently been diagnosed with Addisons
 
Hey I just noticed you are in Washington State. I am getting used to this yet. Maybe you will get to see the Endo I have here now. She is awesome!

making777 06-04-2007 02:13 PM

Re: I have recently been diagnosed with Addisons
 
Where is she moving? I am quite intrigued! I like my endo pretty well, but I am not partial. It took her a while to take me seriously, but I am glad that she does now. I live in Gig Harbor, close to Tacoma, 1 hour out of Seattle. I am sorry that you will have to be without her. I hope she can recommend
someone that you like!

I'm glad you are doing better and are exercising. I am just now getting back to exercising, after 3 years of being too exhausted to attempt it. I feel great now, but I am gaining weight due to the meds, and that makes me nervous!

Have a wonderful day!
MaryAnn

Diane44 06-04-2007 02:21 PM

Re: I have recently been diagnosed with Addisons
 
I am not sure where, she only said Washington State, her last name is Cosma.
Wow three years to start to feel better! Oh my! I am so fortunate. I did nearly die and I wasn't even in a frame of mind to know I was sick. I thought I was being lazy and not eating healthy. I didn't even want to go to my appt because I insisted that there was nothing wrong with me and I was wasting everyones time and energy. If I would just get off my butt! I can laugh at myself now. Thank goodness my husband knew better. I sometimes would wake up and not be able to remember simple things like a hair brush or dresser so I would just lay back down and stare at the wall until I could figure it out. I didn't know enough to be scared that I was that sick. I just didn't know..............

making777 06-04-2007 06:22 PM

Re: I have recently been diagnosed with Addisons
 
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

cruiser8892 06-04-2007 07:12 PM

Re: I have recently been diagnosed with Addisons
 
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.

Diane44 06-05-2007 06:42 AM

Re: I have recently been diagnosed with Addisons
 
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.

Diane44 06-05-2007 06:52 AM

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

I did have the hyperpigmentation and I was SO dark. I had this for a year or so and it got darker and darker but everyone just thought I tanned a lot or would think I had been on vacation. My family didn't really think much of it because I am usually tan from being outside so much. I should have realized it but after so long it just seemed normal and I didn't give it a thought. My Dr. never asked about it when I started getting sicker either. When I went to the Endo. he thought I looked quite healthy so when he asked me to change and I told him I couldn't without my husband helping me, he thought that was odd. (I was still in my PJ's that day, I was too sick in the morning to change and I had to have a ride in a wheel chair because I couldn't breath to walk anymore.) Then he said he heard my labored breathing when changing and the nurse had already told him she couldn't get my BP, so when I came out in the gown one of the first things he asked me was if I tanned a lot. I said no, it has been over a year that I have had this tan and it doens't go away. I think he knew instantly what was wrong and I am forever grateful. He was not able to get my BP or pulse either at this time. I was a classic text book case.

Diane

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.

Diane

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.

Oleqwilter

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?

Diane44


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