hi, my name is deby. i am 40yrs old with multiple diagnoses, med.s and problems that have progressively gotten worsto the point of er visits 8 in one year for what i and my family calls attacks. i have severe fibro. hyatalhernia, am menopaual due to a full hysterectomy 3yrs ago, osteoarthritis of the spine, anxiety attacks, depression, copd, tension headaches, lupus, low blood press. that drops lower, cronic fatigue, problems with infecions in kidneys severe to the point of a permant preventive antibiotic, low platlets anemic, low hemoglobins, sleep deprovation, severe on going back pains, numbness hands and feet with no tolerance for hot or cold and no appetite. blrr vision and eyes that aged 8yrs. in one year. i have on going muscle weakness, pain, swelling t times and aches from head to toe. ive been having what we call attacks: always happens in the mornigs have back pain, naseau, weak, shake, blood prssure drops that i cannot sit or stand up,sweats, chills, cant talk right and keep passing out sleeping all through day and night. this used to happen 1-2 days, 3-4 times a year. the past 2yrs now its 8-9 times and 6 days to 2 weeks i sleep like this with all these symptoms, using alot of salt to balance me back up. i feel as if it might be the last day each time, my heart bearly beats, its so slow and i have a scarry sinking feeling. i have seen dr.s from a-z, and 1 week ago started with a nephrologist. hes done 24 hr urine 2 times, echo gram and renal doppler study last week. can anyone give me some input on any of this. i havent gotten the results yet, but does this even sound like addisons? please help!!!

So if it sounds like addisons have a blood test for cortisol and a 24 hour urine collection also tested for cortisol. If they are on the low side then you can get a more specific test from an endocrinologist that will verify your cortisol deficiency.

It sounds more serious than just addisons. Have you been checked for a pituitary tumor? I would also add a blood test for prolactin which is often elevated in the presence of a tumor.

thank you so much for responding. i am at my wits end with all these problems, tests, and mecications and never getting any better or feeling fully diagnosed. i have found some information on addisons recently and found i have 15 out of the 16 symptoms and problems also, i found that the problems that i have, that i call attacks are in deed an an addison crises. i am presently seeing a nephrologist and he has ordered a 24 hour urine collection, but im not sure if it was done to measure my cortisol levels. also, as a nephrologist, would he be aware of addisons just as well as an endocrinologist and be able to pick up on the symptoms as well, or do you definately need only the endocrinologist? Originally posted by orion:

So if it sounds like addisons have a blood test for cortisol and a 24 hour urine collection also tested for cortisol. If they are on the low side then you can get a more specific test from an endocrinologist that will verify your cortisol deficiency.

It sounds more serious than just addisons. Have you been checked for a pituitary tumor? I would also add a blood test for prolactin which is often elevated in the presence of a tumor.

Hi Deby-

Hang in there. I have adrenal insufficiency (almost the same thing as addisons) and everyone I have met who has this problem has been through misery getting it diagnosed- including myself.

Mention it to your nephrologist- it can't hurt. Since the kidneys can be affected as well I would hope he has at least some knowledge of Addisons. I would also see about getting a referral to an endo if you haven't already done so but with a lupus diagnosis you probably have seen one before?

PVS thank you for responding so soon and on x-mas eve. i didnt think id get an answer so quick. an endo. i saw 6yrs. ago and the only thing he found was my blood pressure too low and dropped when i stood. i was advised to add salt to all i ate. i have not seen one since. it was my rhumotologist that found at times low platelets, not always being low,but after 4yrs of my attacks and all my med. problems it was then considered to be lupus. i was put on steriods and had such excellant results that after 4 months of them, i was weined off to gradually go into the lupus med. now, i find out it does nothing for these attcks and did absolutely no good to be on them. the only time i felt like myself again, physically, and mentally was when i was on the steriod. i plan to seek an endo. again if the neph. doctor wont assist me in finding if its addisons or not.

Adrenal insufficiency (Addisons) is very difficult to diagnose without the proper blood tests. However one classic symptoms is blood pressure dropping on standing. I wouldn't wait for doctors to try to guess this diagnosis. Go prepared with information about Addisons and say specifically you want to be tested for it. You will probably need an endo for the active blood tests, but the simple ones I suggested before can be done by any GP.

YES, please see and endo....do not wait for one doctor to send you to one....they do not like to give up a patient....ever! Go as the other post said with information about Addison's....be informed...do not give up...! I went through what seemed like a million test before I was referred to an endo in Houston, Texas....and then the road was long and slow....but working to make me feel more human again! It is good to find out that you are not crazy....the feelings are very real....and with the correct doctor all will be better!