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Addison's Disease Message Board


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Hi everyone...
I am new here...just joined. I have a ton of questions, but will try to keep it to a minimum for right now ;)
My short history is that starting 11 years ago, right after I had my daughter, I started having all kinds of problems with my liver, bile duct and pancreas. I now have chronic pancreatitis. I have had at least 20 surgeries over the years. About 5 years ago I became very depressed, but that is mostly fine now. I had also had a ton of unwanted weight loss, I am 5'6'' and was under 100 lbs. But recently have gained alot of weight...and not because of what I am eating. The last few years I have been sick almost constantly....I get sick (like with a cold or flu) right before my period every month, it takes me forever to fight anything off, and I am so tired all of the time.
In the past 2 months I have dealt with shingles which eventually got infected, but are finally better. So, my doctor did a morning cortisol blood draw and it was low, which I kind of expected. I go in for the ACTH stim. test in 2 days. I am also very tired all of the time.....except around 10-11 pm when I start to wake up and then can't sleep at night. That drives me crazy. It seems like anytime after5 or 6 am I can fall asleep and stay asleep until 12 without any problems. Why can't that happen at night? (as I write this at 2:45 am:(
My questions are......do any of my symptoms sound familiar to anyone else?

I also have had these episodes after I have been sick with something. I was wondering if this sounds familar to anyone, if it is related to the adrenals...
Sometimes, after I have been sick for 5-7 days with something I have these episodes where I become extremely lethargic....like sleeping 20 hours a day. I have a hard time getting up and walking up stairs or doing anything because I am so fatigued and my muscles get so weak. My head is also really foggy and unclear while my balance is off. I have said to my husband that I feel like I just drank a case of beer (and I haven't had any alchohol for 10 years). But I can't drive because I feel like I am in such a fog. The other wierd thing is that I swell up like crazy. From my head to my toes, I just retain water. This can go on for 2-3 days and as long as I can sleep like my body wants to, I usually come out of it ok. But when I say lethargic, it is really bad. Like I can't wake up when I want to. It takes a ton of effort to wake up. I can also get nauseaus and have no appetite during these episodes.

I know this is long, but like I said, I have so many questions. Thanks for reading and please let me know any thoughts on what I have said. :)
[COLOR="Navy"]Hi! Thanks for responding to my post. I was beginning to wonder if anyone visits this site any more. Can you tell me a little more about what your symptoms were or are like, the ones related to the adrenals. I know it is probably hard to distinguish between MS and Addison's disease all of the time. What symptoms did you have that let to your investigation into the endocrine system? I read so much and some things seem like they fit me, and then others don't even come close. For one thing, everything I read says that people with Addison's have a low blood pressure. However, right now my BP is high. But that is something new for me. About 5 weeks ago I had to have a CT scan because my doctor thought that my shingles had abscessed. I have had sooo many CT scans over the years, it was no big deal to go. However, I had a reaction to the dye. I got some hives, but my biggest problem was that my pulse and BP went really high. I know that my BP was not high before the CT scan because I was in my doctor's office. They took my BP there and it was 124/74 and my pulse was 85. My doctor sent me right to the hospital for an immediate scan. After I had the reaction my BP was around 140/95 up to 190/120 and my pulse was between 110-140. I spent 4 days in and out of the ER/hospital. They found nothing wrong with my heart, etc. So now, my BP will still get very high but then will also go back to normal. Why all this is happening, I don't know. I went in for my stim test yesterday and my BP was 154/97 amd my pulse was 115. So, as you can see, my BP doesn't match what most people say about AD. Did you have low BP?
Then there are things that are exactly like AD. Like my sleep patterns, problems with my period, fatigue, etc. One of the main symptoms that I have is a very poor immune system. I get sick all the time. It is unreal. I am sick at least once, but mostly twice a month. The biggest idicatior of my poor immunity is that I came down with Shingles. And guess what returned tonight? You, got it....the shingles. I am just sick about it. I have read somewhere that having shingles is a big indicator of AD. Have you heard anything like that? Most people don't get shingles, let alone twice in 3 months. That has to mean something, don't you think? I want to know how I am going to get a hold of my doctor today, because I have to get on the anti-viral before it spreads to much.
I know I am asking you a lot of questions, and chatting a lot :D, but like you said in your post, it is nice to not feel quite so alone in all this. Especially since it is 5am here, I haven't slept and I have to yet tell my husband and daughter that I can't go with them today to my father-in-laws for Thanksgiving. My father-in-law has lymphoma and leukemia and there are going to be 3 babies there, one who is only 2 weeks old. I wouldn't want to take the chance of passing the chicken pox virus on to them. So, this is why I am posting such a long note. I am feeling a bit alone and bummed right now.

I am also bummed that I couldn't get the results of my stim test back today. My doctor tried, but the lab didn't have them ready. It seems odd to me, though. Everything that I have read about the stim test says you get a baseline cortisol, they inject you with the ACTH (or the synthetic one I can't remember the name of), then you get cortisol levels drawn every 30 mins 2 or 3 times. Then they check to see if the cortisol levels are within normal limits at each time. Well, my doctor had them take not only cortisol at each blood draw, but also the ACTH. She said today that the cortisol levels came back but the ACTH results didn't. Because she didn't have the ACTH levels, she said she couldn't decipher the results of the test. Have you heard of that? She did tell me that my first, baseline cortisol was normal. But, I had it drawn a week or two ago and it came back low. Do you know what that means? Do you know if your cortisol levels can be low for the other blood draws if it is normal at first?
OK...I am sorry I asked so many questions. I am just so confused. :confused: It's funny how you have helped me tonight...... all because you have an account here and I could type and vent all I needed! :D Funny how typing into a computer to a complete stranger can be so helpful. ;)
Please get back to me when you can and I hope you have a very Happy Thanksgiving!!! :wave:[/COLOR]
Hi Mary Jo,
Well, I got the results of my stim test back yesterday and everything came back low. I actually didn't get the exact numbers, I just found out that they were low and that my doctor referred me to the endo.
It has been a really tough few days. I ended up with some kind of bug, I think, that just knocked me out. It started with the staph infection that was diagnosed on Thanksgiving. Then Friday I came down with some kind of respiratory virus. Then on Sunday I started with some other wierd thing. I actually am wondering if it has something to do with my adrenals, or something else in my endocrine system. It's happened 4 times now. First of all, it seems that I almost always get sick right before I start my period. I get a cold or some other bug. Well, the last 4-6 months the same thing has happened, but it's been worse. It's about a week before I start my period, and I am sick, when I start to feel really bad. I get extremly tired, so tired I can sleep 20 hours out of a day. I also get hot/cold sweats and I swell up like a balloon from head to toe. I basically can only lie in bed, feeling like I am cold, but yet sweating, and sleep for a couple of days. I also feel very lightheaded and my head is in a fog, so bad I can't drive. After a couple of days, the swelling starts to subside. It's like my kidneys start working as I am in the bathroom all the time. After that, I start to feel better and the other symptoms start to go away. Then.....I start my period. I get really bad cramps, nausea, etc.
Anyway, I started with one of these episodes on Sunday and today I was feeling so bad I went to the doctor. She did every test imaginable and couldn't really find anything, except a high wbc.
Do you ever experience anything like this? Because I felt so bad and my doctor couldn't really find anything, it makes me feel like it is endocrine. And she did every "normal" test. She did a strep test, a flu test, urine test, pulse ox, mono, blood work, chest x-ray, etc. For me to feel as bad as I did today, it just seems odd that everything came back normal.
I know what you mean about having addison's and it affecting your immune system. It just seems like I have had one thing after another, and it is only getting worse.
Since my stim test cortisol levels were low.....does that automatically mean I have addison's? Or can you have the low cortisol without having addison's? Do you know? You seem pretty educated on all this medical stuff.
I know how you feel about doctors not believing you sometimes and how frustrating that can be. You are right, we pay them so we deserve good treatment. I have seen sooooo many doctors over the years and have had my fair share of...."maybe you should see a psychologist, or...Here take this antidepressant, etc..." I have chronic pancreatitis as a result of years of surgeries and problems with my liver and my bile duct as a result of having my gall bladder out which all started right after I had my daughter. My daughter's birth was very hard. She was almost 10 lbs and it took me 4 hours of pushing and forceps for her to finally come out. I had a lot of problems after her birth from the episiotomy and from the trama of the forceps. So, after I had my gall bladder out and I was still having problems, I started the doctor search. One of my main goals was that I wanted to get myself to where I could have another child, which I told the doctors. So, I went to this one doctor and he barely listened to me, didn't even examine me, and said "I think you are just very nervous about having another child because you had such a difficult delivery. I think all you need is to go see a therapist." I couldn't believe my ears! I was so mad!
I am sure we both could go on with stories like these. It sure is a blessing when you do find that doctor that actually listens and cares.

Hope you are feeling well and aren't to cold out there with those horses!





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