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. :)
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. :)
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.
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.
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
oleqwilter
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.
