Does anyone know the difference between adrenal dysfunction and addition's disease? Thanks!

Hi Dawn-
From some other sources I have heard that the difference lies mostly in why the adrenal gland is disfunctioning. If it is the adrenal gland that is damaged and/or malfuctioning and has stopped producing Cortisol then Addisons is the diagnosis. If the problem is originating because of a problem with the pituitary signaling the adrenals or some other problem then Adrenal Insufficiency I believe is the term used.

For all intents and purposes the effect is virtually the same. My Dr. flips back and forth with which "name" he calls it. It all has to be treated with cortisol replacement. Not very technical but hope it helps- PV

Thanks PVS:
I guess by my bloodwork they figured I was low on Cortisol, plus my blood pressure has been extremely low. They also did a head scan and said that was fine. Does drinking lots of water and added salt truly help? I have been told to do this for this condition. I just can't stand the feeling of almost passing out unders some stressful condtions when my bp drops. I just don't understand how one develops this condition. It is life changing. Dawn2

Dawn-
Are you on cortisone replacement? Salt cravings can be really intense when your body is low on cortisol. Before my diagnosis I was sucking on potato chips just to get the salt fix. Of course at the time they had no idea of the problem. What have you been formally diagnosed with? Paulette

PVS:
I've also been diagnosed with fibromyalgia (with myofacial), CFIDS, severe allergies (foods and chemicals), tmj, adrenal dysfunction, hypothryroid and now possibly sjogrens. I am on Cortef - about 12.50 mg per day. They started me and have slowly increased. I think they'll probably max me out on 20 mg a day. Yes, salt cravings big time. I would eat chips, cheestos, fritos - anything for the salt. Now I've found out that I'm allergic to corn which is in iodized salt. I can only have sea salt or non-iodized salt. This has been such a long and frustrating journey with my health. Until I hit my 30's - I never had any problems. Now, it's been one battle after another! I have tried putting the salt in the water and drink it, but it's almost gagging! Dawn2

Dawn-
Oh how awful- I can tell you that everyone I have met (all online of course) has been through hell getting a diagnosis for adrenal and many endo problems. I don't know if I will get in trouble for posting this but there is a great list board on the net for addisons and other endo problems. If you search for addisons list server you will probably find it easily. There is a wealth of information there and it's bound to at least help give you moral support. And gosh, is drinking salt water good for you- even if you need salt? Ugh. Also- 20mg of cortef is a really low dose for cortisol replacement. I am on 37.5 mg/ day.
Take care-Paulette

Paulette:
I think I know what site you're talking about - shows a picture of the individual with Addison's? I have gone there and read a lot, but never posted. I don't see some of the things that are happening to me and wonder if it's related to allergies, adrenal dysfunction or possible sjorgrens. Do you have the dark circles around your eyes? Did you have problems with the heat going on where you would get a headache or have your face flush? Sometimes, when the heat comes on I get so flush and sometimes my ears are bright red! I also get severe nasal congestion and extreme dryness to the point of nasal ulceration. I understand with sjorgrens, it affects eyes, mouth also. I do have the some of that, but the nasal and swelling in the head (is the only way I can explain it) when I turn red. I have gone out of state, out of town, to a motel, elminated allergens and I still have the dark circles, swelling, redness and muscle cramping. I wonder if I should pursue a higher dose of Cortef. I'm just miserable in the winter with the heat coming on and miserable in the summer when it gets warm. In the winter, I have to keep it under 70 or else I cannot tolerate it. Can you relate to any of this? How long have you been on your meds and what difference did you notice? Thanks, Dawn2

Hi Dawn-
I know what site you are talking about but that's not the same one I was thinking of. I'm going to post the link and hope it works. http://home.ease.lsoft.com

I have seen several posts at that site that talk about many of the same symptoms you mention. I was diagnosed in 1992 after 6 months of hell. Spent alot of time in the hospital. After the cortisone replacement I was like a new person. I also was found to have thyroid problems and menstrual cycle problems.
I had an 18mo. old at the time. I am now on synthroid, cortisone, and zoloft. All because of a pituitary disfunction that they can't identify the source of. The cortisone is essential- and increased dosages are a must in times of emotional and physical stress. Without it- I drag and feel like hell for weeks on end. It does not get better until you increase the dosage to mimic what your body would do normally. They thought I had fibromyalgia as well until the adrenal insufficiency was discovered and corrected. Then- most of those problems are under control. The problems with heat - common. I also had the same problem with my ears that you mention (I feel better now because I have not heard of anyone else that has that problem). So before this gets too long-
try that link above. It is just list server (no pictures) and you need a logon and password which you can set up easily. I post there off an on and there are some great people there too. This is such a rare problem that whereever you can find help- grab it.
TTYS- Paulette

Paulette:
Thanks so much for the info and the site. I will definitely check it out. My endo says my levels are good now, but I still feel awful. I started feeling bad years ago under a major stressful job and it continued to get worse and worse. They say it's the allergies or the tmj but I know people with both and they do not have problems like I do! I know people with severe allergies and they don't have problems with the heat etc., I even know a girl who had somnoplasty with allergies and said she could breathe real well after the procedure - me I still am congesteed unless I am exerting some kind of energy type thing. After a horrible sinus infection and two months of migraines, I have been on this path of what's wrong with me. If I get a bite from something I swell up and stay swollen for days. Now the muscle spasms are horrible in my neck, back, and legs. After they did put me on small doses of cortef, I did notice some of the leg spasms went away. I was on clariton for two years and it kept my blood pressure up a bit. Well, in the last 6 months I've stopped the clariton cause it was so drying and my true bp has shown. Did you find once you were on the right dosage for cortef that it helped your moods? I find everything to be an effort and Christmas is definitely a stresser for me when I use to love this time of year. Sound familar? TX for the info, I'll be checking out that site! Dawn2

Hi Dawn-
Any kind of stress is very hard on someone with adrenal insufficiency. Your body just can not combat it like most peoples. I think the Drs. way underestimate it sometimes. I know I have trouble even getting over a simple cold sometimes. Turns into a long, major ordeal. Sounds like alot of that is happening with you- especially with the other problems you have. I almost always need double my regular cortisone dose to kick anything. And alot of people on the other board I mentioned are on increased dosages just to get through the stress of the holidays.

Yes- I think the cortisone drastically can alter your mood. I also have ended up on zoloft in an effort to control it.

TTYS-
Paulette

Hi Paulette:

You have been very helpful and much appreciated!! I tried a number of times to get on that other site but was unsuccessful. Even my hubbie tried (the computer whiz) and no luck. My concern is that I soon have another appt with my endocrinologist and I want to emphasis "the symptoms" with adrenal dysfunction and not fibro. I know my mother has been diagnosed years ago with a sleeping illness (narcolepsy) and cataplexy (sp?). She cannot drive anymore, nor do things alone for fear she will fall and hurt herself, etc. She will collaspe with anything emotional - good or bad. Out she goes - within seconds. She has all the trigger points that fibro considers points, but she was placed on two meds (I'm not sure, but I'll find out before my next appt.) I did read that Addison's is hereditary at times. I have the sleeping problems, except I do the opposite. I can't sleep at night, but during the day can fall asleep into stage IV in seconds. I will describe what happens to me before I almost pass out and you see if it sounds like if this is Addison's...I have a stressful situation...whether it be in traffic....a conversation that is heated...a conversation with my husband about the stresses of his work...!! And I will feel my hands start to tingle then my head and ears feel like they are swollen - my hearing gets blocked..extreme lightheadedness...sometimes I can fight it off, other times I have to put my head down between my legs to get the blood back to my head. My mother has just accepted what her neuro says (although the doc does not know why this is happening), but I don't want to be just labeled with fibro when something can be done to improve my life. When they increased the Cortef just by 2.50 mg., I noticed the muscle spasms improved for about 3/4 hours after the heavier dose. Sorry to be lengthy, but it's been such a long long road here. I have one doc who is an environmental allergist and she's telling me I need to do all this stuff to my house so I can breathe. It has been expensive and it has only helped a little. And yes, I have noticed that the holiday "stress" has really affected me to where a couple of days, it was very difficult to "think straight." Is this another symptoms?!!! Yes, I have a horrible time with colds like you say. My docs said it's allergies or tmj. I don't agree. There's got to be more to it than that!! Thanks again. Dawn2

Hi Dawn:
I'm posting another link to the same site. Keep trying- it's such good info I would hate for you to miss out. http://home.ease.lsoft.com/archives/addisons.html

A lot of the symptoms you mention I don't have and really am not sure if they are addison's related. But there are a couple of people on the board that would know. My email is - corresponding directly would be easier. The confusion is something I have a big problem with. I can sympythize with your personal hell right now. Diagnosis is so difficult and then once you have it so few Drs. really understand it so they tend to underestimate the effects. Keep hanging on. Help is out there.
Paulette

[This message has been edited by PVS (edited 10-03-2003).]

Paulette:

I will keep trying on that site and I've got your email address. Perhaps, the site was not working that particular night. Also, did you have any muscle cramping prior to your diagnosis of Addisons? I mean all over muscles to the point of you not being able to function normally? I know the muscles in my neck will cramp and stick out and you can feel how tight they are. The fuzzy thinking part is when I get up fast or am stressed, I feel that I just don't have "clear" thinking is the only way I can describe it. Ok - I will hang in here take your words of encouragement!! Thanks. Dawn2

Hi Dawn-

I remember some muscle cramping but honestly not the extreme that you are talking about. I had ALOT of soft tissue pain (like around my joints- fingers, knees etc.). But don't let that discourage you- If I have learned anything it is that the symptoms vary greatly. I think you mentioned really dark circles around your eyes. That seems to be pretty common but I never had it. I remember the "joint" pain being significant to the point of it interferring with daily life. I also suffer from awful migraines- I mention that because I started seeing a massage therapist to try to help ease them and the muscle tension she found in my neck was really bad. It took 4 or 5 visits of her working on only my neck to "break through" the top layers of muscle tissue. She said they had been in such a state of spasm for so long that I probably wasn't even aware of it anymore. Anyway- since she has been able to fix that things have gotten better. I am wondering if something similar would help you. It certainly worth a try. Do you frequently forget what you were going to do or where you were going. At times this still gets really bad for me still.

I know right now is hard for you. Like I said I have lived it (and my husband can sympathize with yours) because they live it too. Have you been accused yet of having a psychological problem or depression, etc. That too is common. I think they want to blow everything off to that when they can't find the answers. That mental "down" feeling is a symptom of addisons. My Dr. told me it is one of the reasons it is so hard to diagnose. Yes- hang in there- you can break through the brick wall and get help. Some right of passage huh? Take care- Paulette

Paulette:
I do have the joint pain also. Mainly, carpal tunnel, knees, and hip. The neck is the worst tho. I will have muscle spasms throughout my legs when the muscles are over stressed (which doesn't take much). I'm not sure how much is fibro or how much is adrenal dysfunction. I know many fibro people end up with thyroid problems. I truly wonder which comes first...the thryoid or the fibro. I am seeing a physical therapist for the neck problems. I just started and she's really good. She is quite informed about fibro and adrenal dysfunction. I, too had horrible migraines preceded by a cold. The swelling was intense. They feel the trigiminal nerve was triggered because I was so swollen. (No one has answered if that's because of adrenal dysfunction as yet). I never had a problem with colds before. The migraines were horrible. I haven't had the migraines for awhile, but I do often get headaches. Whether this is related to tmj, so much swelling in the sinuses, the adrenal dysfunction, or allergies...??!! I did go thru pain management last year and had counseling. I didn't gain anything from it. They want to blame it on your childhood, held in feelings, etc. My feelings are of frustration of not finding a true answer for all these problems. I was so active and "full of life." And now, I get overstressed by minor things when I use to handle and juggle life like it was no biggie! I keep hoping that some miracle doc here will find the true answer and I can have my life back. I don't expect it to be perfect, but I want to get through a day without my neck so stiff that I have to lay down. I've never applied for disability, I've heard it's really hard to get with fibro and I'm certainly not up to a fight! But the medical costs have been extensive as well as making the house as allergy proof as possible. Pretty soon, my house will be more sanitary than a hospital!! There has to be a reason why my blood pressure is dropping. My next appt is in January and I will definitely talk about that. Thanks for your support. Dawn2 p.s. Yes, I do the same about forgetting what I was going to do....especially if there is a lot going on. And you are so right about our husbands living it too. Mine feels so helpless at times, especially when men want to "fix it.!"

Hi Dawn-

The few times since my diagnosis that my blood pressure dropped was when my cortisol levels were really whacked out. I also have had it happen that my pulse rate dropped so low that they couldn't get it on the monitor at all (it was 21). Scary- at least I was in the hospital at the time.

Have you had actual allergy tests that show what you are allergic too? or is it a guess on their part?

Also - you might find that the fibro symptoms go away once they correct your cortisol level. That is what happened to me. I carried around diagnosis's of arthritis and then fibromyalgia for years because I think they didn't know what else to call it. And now-the problem is all but gone. My suspicion is that I had the problem for a long time - just not bad enough to clue them in. My endo agreed and said that my first pregnancy might have been just enough to tip the scales to where I went into a crisis and they HAD to look further. Terrible memories. I think I had every test that is out there- do you feel like that?

Paulette:
Yes!! A big yes on every test you can imagine! They have scoped and poked and scanned - there isn't anything left! (Oh, I'm sure there is....) But...I did notice when I started on the Cortef, the leg spasms were reduced to 1/2 the amount of pain and how often it happened. The carpal tunnel - I never could drive the lawn mower cause it would kill my wrists for two days after or carry groceries. After the cortef, I have been able to drive that with no problems and do groceries. So, I do see a definite improvement. I just don't think my doc thinks the adrenal is as bad as it is and does not like to increase it over 20. I'm going to beg for 20 next visit with permission to increase when I'm stressed. I do note that I had a lot of driving this past weekend and a family member going thru surgery and I had the spasms and couldn't handle any decision making! (My poor husband!) Now today, several days after and most of Christmas shopping all done, I'm a different person. Sound familar?? Yes, I did have an allergy test - bloodwork showed that I was allergic to 30 different foods, many molds, and dust. My skin test showed only allergic to ragweed. I DO know I am reacting to foods, dust, ragweed, just about anything in the air and odors. I have no taste and they figure it's cause I'm so swollen. I've had no taste about 10 years ago for six months - then it came back. This time, it has not. My first "major" pain was after a major surgery. I had severe pain in my lower back and excrutiating pain in my legs. I was reading in a crisis that is quite common. I wonder if that's what I was going through and not a fibro flare? I was anemic at the time and I had a difficulty recovery. They did a thyroid test, but the levels were normal. I did not have the dizziness back then like I do now. I can't believe how low your pulse rate was - 21 - good thing you were in the hospital! I know the paper my endocrinologist gave me states that you are afraid of doing new things, become anxious, have increased allergies, fatigue, etc. with adrenal dysfunction. I fit the mold. How do you increase your meds when you're stressed? I know they started me real slow - only 1/4 of a 5 mg tab for 3 days then added on another 1/4 for 3 days, etc. Are you able to work? Sorry, if I ask any questions you don't feel free to answer, that's fine. Hope you are having a good day. Dawn2

Hi Dawn-

Oh yeah- I've been there, all the scopes, all the scans, all the tubes. I was being fed via IV before they could figure out what was wrong. My primary symptom was vomiting. Anything that I put in my stomach came up- and then some. I had dry heaves constantly- so severe that I would gag until I threw up bile. Sorry for being graphic. I lost 65 pounds in about 3 months. To give you an idea how unfamiliar this illness really is- the endo Drs. didn't want to give me cortisol because they said that a lack of cortisol couldn't cause the symptoms I had. They have now told me that they "learned something new". Don't I feel lucky. My primary care Dr. was the one that insisted finally that they try because I was virtually dead- they were expecting my kidneys to fail and my body was already filling with fluid because the cells could not retain fluid anylonger. Something about low levels of protein. I even had a bone marrow test because my white cell count was whacky.

Just go in there and push, push, push. Have your husband go with you and push them also. You DO know what you're talking about. I had a twin pregnancy after my diagnosis and my OB/GYN kept telling me that the adrenal insufficiency would have no effect- WRONG. Got desperately ill again- and was on a home IV unit for fluids until about 5 months- again due to vomiting.

For stress increases my endo told me this-
If you think you are sick or getting something- double it for a few days. If you KNOW you are sick or under severe stress- triple it. I keep it there for a few days and then usually alternate days bringing it down.

I don't understand why they are giving you such small doses? It is cortisone you take right, not prednisone?
Is this your endo? If you don't mind me asking are you located in a large city where they have a lot of medical facilities or even a hospital connected with a med. school? I remember too the endo dept. telling me that so often adrenal insufficiency has many "unrelated" symptoms.

I do work- mostly full time. I work for my family's business so I can be flexible if need be. I have an accounting degree. Have 3 kids and a great husband.
Don't hesitate to email me if you like. I am connected pretty much all day for work so I will get your message pretty quick. It's really no problem.

Thinking about you-Paulette

Hello
This is the first time I am posting here on this particular topic. I read the others and it got me thinking. Years ago I seen an endo and she did some tests and said I didnt have cushings disease ,but I had an enzyme defect of the adrenal glands (in the 17 keto steroids). I never knew what that meant. Havent seen an endo in many years. I am now 49 and dealing with a second major depression with anxiety attacks. I am dealing with it since being put on effexor and remeron and at night xanax. I am also going through menopause. I am also hypo and take meds for that . I almost lost my teaching job earling in 2002 because of panic and having to leave and was out a long time.Tried explaining it to the principal and he could have cared less. I stil have my job ,but a little less stressful . I am in special education and was with the severe and profound kids but now in resource. I take a aspirin each day because I had a blood clot a couple of years ago.Told never to take hormone replacement yet my regular doctor says i need estrogen. Anyway I am wondering if I need to see an endo again and see what all might be going on. I tested negative for arthritis conditions,but always have a high c reactive proteiin. Any info would be greatly appreciated. thankyou susanp

Sorry,
I posted this with title on main topics too. I am still learning to get this right.
susanp

Susan:
It took me 4 years to get this far to get some answers and I'm still not through! Some of the symptoms of adrenal dysfunction are anxiety, hesitant to try new things, new and increase of allergies, etc. The book on Adrenal Fatigue by John Wilson is excellent. The field you are in (if you have adrenal problems) would certainly increase your symptoms as it requires a lot of patience, and although very rewarding, is a stressful situation. Someone with adrenal dysfunction when placed under stressful conditions does not have the normal amount of cortisol to be put out under circumstances of stress (whether it be a situation or an illness). I would recommend reading the book and researching on adrenal dysfunction and see if anything clicks. If any of it clicks, I would see an endocrinologist who is "willing" to listen. A neighbor of mine was describing to me about anxiety attacks, sleeping problems, and fatigue. I recommended my endo to her and she found out she had adrenal dysfunction with her levels extremely low. The doc placed her on Cortef and she is doing better. I would not settle where you're at now...Like Paulette says...push, push, push. I would seek further answers. There's a reason why you are experiencing what you are. Good luck. Dawn2

Dawn AND sussane If you dont mind me asing ...how old are you and for how long have you had the condition
what was your first sign that something was wrong?I have suffered from panic attackes for years and had to have a test that showed physical and/or mental exhaustion and was told i would have to have a test for cushind disease
it turned out i did not have the test but my pituary test came back normal and within the range
what are the symptoms as now my anxiety is back and i feel awful and doctors just say ohhhh your nervous
please any help would be appreciated

Starlight:
My symptoms began in my early 30's, as did with my mother. My symptoms grew worse and worse over the years, especially in my late 40's. I did not have the anxiety attacks, but was hesitant on trying new things but forced myself. I have a lot of muscle/tendon/joint pain. My neighbor actually had the anxiety attacks. She still is on meds for that. In your case, I would definitely see if they could do a cortisol test from morning through late day. You're on a lot of meds too. Read over the side affects and see if any of them may aggravate nervousness, etc. Dawn2

starlight I am 49 years of age. In my 30's I had severe depression,and now taking meds again for it. Lately also I have noticed that if some stress happens I seem to feel an anxiety attack kick in ,so when I can I plan to see and endocrinolgist to have my cortisol levels checked and whatever else. I hope we all find some answers,but I do think it is worth looking into. It may be why some of us are more likely to feel the extra anxiety than others,but probably many who are never diagnosed with these type of problems.
susanp

Hi, Just new to this board and addison's. What is the reason for predisone instead of hydrocortisone for taking daily?

------------------
mjm

hi, my name is cindy. i posted a message, but realized it didn't post on this board http://www.healthboards.com/ubb/frown.gif i was diagnosed yesterday w/ level 3 adrenal exhaustion. after yrs of going to dr. after dr. w/ tests all coming back "normal" i decided to go to a nutritionist/acupuncturist that used a different type of testing than my endocrinologist did. saliva samples from 4 different times of the day. after my blood test w/ the endo came back normal (that was 2-3 mths ago) i thought i was truly imaging this, then i found shelbe!! she suggested i take this test, thought it to be more accurate than the blood test. rsults came back yesterday, she was very sympathetic towards me & insisted that i be sympathetic towards myself as well. i am a text book case. i read the postings on this here, can relate to all except that i also have times when i battle w/ thoughts of suicide - i read this morning @ www.fred.net/slowup/hai96.html (http://www.fred.net/slowup/hai96.html) that it is normal to feel that! phew!!!! i'd appreciate any feedback , to be able to discuss this w/ someone that can relate would be comforting. http://www.healthboards.com/ubb/smile.gif thanks!!!

My story is the same as everyone's I've read.My drs.say I have Addisons and I have been on prednisone for going on ten years now;along with the same old pain med.Now i have osteoporosis as bad as an 80 yr. old woman.I now have these spots showing up on bone scans.I have been told it was cancer by one dr. and not by another.My blood presure does that dropping thing to.Severe headaches to the point I have to go to the E R and get a stadol inj.
I am writing to tell you I have findly found a ray of snnshine.I forgot to tell you my age.Its 39yrs.Ihave started a health regiment consisting of two little drinks a day that contain all of your fruits and vegetables and aloe vera for your digestive system.There is also a cople of pills and all is natural.For the 1st time in yrs. I feel good.Notice I didn't say I was cured but that I feel good.ihave only been on the program for 1 mon.But i know it has helped me.Ifeel so strongly about this product I am now selling it so if your interested go to my website at oasiswellness.com/woolseyd Iwish everyone could try this program and feel better.Best wishes

I didn't know you couldn't promote a product on her. For that i am sorry.Ijust wan't to help others like me.
I heard on the news that if you had early menopause or hysterectomy that you could develope addisons?Has anyone else heard this?.I think that the panic attacks
and high level of anxeity have something to do with our bodies getting abnormal levels of adrenalin. Is there any research being done on this disease?God bless all

Marie:
I don't know if there is any research on that - but I do know in my case, I had mild symptoms prior to my hysterectomy. After the surgery - I went full blown with the muscle cramping, etc. They put all the blame on fibro/cfids, but I really wonder if the bottom line is adrenal dysfunction. Which came first? It's like the chicken or the egg! Guess we'll never know at this point. dawn

Dawn
I have always had trouble with my health.But after I had my last child and almost hemoraged to death all went down hill after that.Iguess the worst thing about this illness is the pain. But doctors like to treat the symptoms but the pain is one of the main problems.
ihad one doctor askme how i felt and I told him I was in more pain than usual and he told me he wasn't there to treat my pain but my disease.I stood out in the hall
after my app. was overand cried on my aunts shoulder for a long time and never went back to him.That was my last endo.and now i really do need another but I want to find one that knows about this dis. Do your arms hurt alot and if you over exert yourself do you shake?
P.S. My family doesn't understand and I feel alone.
thank you for responding
Marie