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Addison's Disease Message Board


Addison's Disease Board Index


Hello,

I'm a 29 year old female, and was diagnosed with Chronic Fatigue Syndrome when I was 15. Back then, I was still able to function normally, I just got tired really easy and had episodes of 'crashes' when I was stressed or overexerted myself. However, I managed to get through high school and lead a fairly normal life until 2000. In 2000, I had a year full of major stress. I could see myself getting progressively worse during this time, and by the end of the year, I literally thought I was going to die.

I was exhausted to the point where I would sleep 18-20 hours a day and still not feel refreshed. I had headaches, nausea, and diarrhea several times daily. I was extremely weak, and couldn't even lift a laundry basket full of clothes. When I stood up, I was constantly dizzy--my blood pressure was always dropping. I noticed after eating each day, my hands and feet would get numb and tingly--this on top of the dizziness. I also began having cognitive problems including memory problems. I felt 'foggy' on a good day. --My cognitive problems got quite severe. (I'm a Mensa member, and at the time, my neuropsychology test showed a 4th grade reading level. I couldn't spell simple words, I couldn't read--I couldn't process what a person was saying to me.) I went to many doctors during that time, and was checked for just about everything--except endocrine disorders. They pat me on the head and sent me home.

Since then, I've been about 80-90% bedridden. I seem to improve for short periods, but whenever I get too stressed, I decline. Actually, my friend pointed out that when I get stressed, I get sick. --I end up with infections that take forever to heal. We've noticed that my well being seems to coincide with the amount of physical or emotional stress I'm under.

Six months ago, I started leaking breast milk. I was sent to a general surgeon to check for breast problems, and he found no problems. (My prolactin levels were also checked, and were normal.) A few weeks later, I started having severe headaches in the center of my forehead. In a matter of a few days, I started having all kinds of strange things going on. The dizziness came back, as did the nausea--but much worse than before. I began having trouble focusing on things that were close to me, and had bouts of blurred vision. (I hit my house in December while backing out of the garage, and had no idea how it happened.) The headaches were getting worse and worse until they became constant--I would wake up with them and go to bed with them.

Because of the lactation, I found my way to information on pituitary tumors, and decided I needed to have that checked out. I saw an endocrinologist who did a of visual exam--she said I had decreased temporal vision, and sent me to an opthamologist. (She ordered an AM cortisol, but refused to do further tests until she saw the results of the MRI. Isn't this backwards?) The opthamologist said I have a loss of peripheal vision, and began asking me if I had various symptoms. He said I have the classic symptoms of a pituitary tumor, and that I need an MRI immediately. He said he was going to personally call my endocrinologist to ensure this gets done ASAP. --That was March 31st. I finally had my MRI last night.

I really believe I have adrenal insufficiency. Last month, I had some sort of 'episode' that I believe may have been an adrenal crisis--or something similar. (I'm hoping someone here can tell me whether it could've been.) On a saturday evening and through sunday, I noticed that I was dizzy a little more often than I had been. Every time I stood up, it felt like my blood pressure dropped. My husband had to help me walk to the bathroom, etc. I also noticed I felt like I had a fever (I usually can't get warm--I'm wearing layers of clothes when it's 65 degrees), my vision was blurred, I was more nauseous than usual, etc. I just felt 'not right'.
Monday morning at 7am, I was awoken by a severe pain in my stomach--this was not a cramp or normal 'upset stomach' feeling. I got out of bed and immediately got dizzy, and could tell my blood pressure was pretty low. I tried to call someone, and almost passed out on the phone. (ears were buzzing and vision was going black.) I layed down on the floor for a few minutes, then felt the nausea getting much worse. I walked to the bathroom, and when I got there, the diarrhea started. I spent the next five hours with the diarrhea and vomiting, and passing out a few times in between. Not only could I not stand up without feeling like I was going to pass out, but I couldn't even sit up long enough to go to the bathroom. --My husband had also come home from work and called my endo's office. Five hours later, a nurse finally called back, and told him to get me to their ER--which is an hour away. So, I drank about a few liters of water because I thought it may help me feel a little better.
By the time I got there I was feeling much better (although not great), and was able to walk in on my own. The dizziness, etc. was not so bad. --My BP was 80/50. So, I'm wondering how low it was when I was at home and couldn't even sit up?? They gave me fluids and sent me home.

--The same thing happened two weeks later, and again, the nurse told me to come in because I needed to be checked for adrenal insufficiency. I got to the ER, where she told me to go, and they acted like I was crazy. The nurse told me she was sending an Endo to see me in the ER, and he never showed. (This also happened the first time) The ER doc said that the vomiting and diarrhea could cause the dehydration and also the fainting. (No kidding!) I kept pointing out that the drop in blood pressure/dizziness happened before the vomiting, etc. --but nobody seemed to want to listen. (Endos don't either) So, I was sent home again.

A few days later, I returned to the Endo clinic and saw a different Endo--one who specializes in pituitary problems. He was very rude to me, and was quite intimidating. He asked what's been going on, and I thought he was talking about the ER visit, so I recounted the symptoms that sent me to the ER. --He responded by telling me I don't have the symptoms of a pituitary tumor, and he can 'predict' that the MRI will show nothing. I told him I was actually concerned that what happened the day of the ER visit was some sort of an adrenal problem--and I realized those are not tumor symptoms. I said I brought a list of symptoms I've been having that the opthamologist thought were pituitary symptoms. --He never looked at the list. He was adamant I didn't have a tumor, and also said the symptoms the day of the ER visit had nothing to do with an adrenal problem. He specifically pointed out that a person doesn't get diarrhea from any kind of adrenal problem. (Am I completely confused?? It's my understanding that it does happen with an adrenal crisis)

--Today I saw a third Endocrinologist at a second hospital. This Endo specializes in pituitary and adrenal disorders. I was sure I was going to get somewhere this time. --This time, instead of showing him my list of symptoms, I read them to him. I couldn't even get half of them out of my mouth--he was cutting me off and telling me it's not an adrenal problem. He, too, says I don't have an adrenal problem and most likely no tumor. Yet, he noticed drooping eyelids?

I've asked all three Endos for a ACTH Stimulation test, and they're all refusing to do it. I was given an AM blood cortisol (non-stimulated, non fasting) by the first doctor, and my result was 20. All three have said my results from that test rules out any adrenal problem. Is this correct in your experience? It's my understanding that an AM cortisol may not mean anything. --I read that people can have normal morning cortisol and still have adrenal insufficiency. Is this correct?

At this point, I'm hoping one of you can tell me whether these are symptoms of an adrenal problem--because my doctors aren't sitting still long enough for me to get these out of my mouth.
Severe fatigue -worse after exertion or stress
I get sick easily (infections), especially after stress, and take a long time to heal
Heat intolerance (mid 80's causes the same symptoms I went to the ER with)
Cold Intolerance - I can't get warm
Dizzyness, blood pressure drops out of the blue
Nausea/diarreah several times daily
Salt/sugar cravings - I alternate, and never used to eat sweets. --Also been eating jars of olives
Body temperature fluctuates - 97.1 - 102. I've been having fevers at night (no infection), and on some nights my temp is low
Blurred vision - also can't seem to focus on things up close suddenly (20/15 vision)
Loss of peripheal vision - visual field test confirmed
Severe headaches that don't go away - I'm taking Benadryl to knock me out at night
Confusion, memory problems, cognitive problems
Pain in my knees, right hip and bone in right foot. --I also went from having perfectly straight, healthy teeth to having my teeth literally crumbling (on things like burritos!) and falling out at 25. --This happened in seven months time, and dentists have no answer. I now need full upper and lower dentures. I obsessively took care of my teeth.
Loss of sex drive and vaginal dryness
Menses still happen but are irregular in duration and date
Lactation - not pregnant, and never nursed
My naturally curly hair (looked close to a poodle) is now almost straight, and hair falls out
I have what I thought were 'liver' or 'age' spots on my face -- at 29? They're a light brown, and about the size of a dime. I have very fair skin, so I don't know what this is.
(cont.)





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