Hello
I am 52 with addison disease and have had it since I was 16. I have to take two steroids through out the day just to live or risk going into adrenal crisis. I have at least one adrenal crisis a year usually from the flu and they are not fun, but very scary. Every time, I either inject myself with 100mg of solu-cortef or ambulance comes and takes me to hospital. I have lived with this disease for 35 years and have found that many Endocrinologist's that I have spoke with have never even treated someone with primary adrenal insufficiency (Addison's), Sad, but true. They seem to treat a relative adrenal insufficiency or temporary- secondary adrenal insufficiency due from when a person was given steroids like for pain as in rheumatoid arthritis or lupus. When the person tries to come off their adrenals are sluggish and do not respond as well, so a doctor may put them on a physiological dosage of 15mg hydrocortisone temporarily. Afters several months they are slowly weaned off. In some instances their adrenals never return to normal and they may need to stay on this dosages.
Regular secondary adrenal insufficiency (Secondary Addison's) is also rare because there is inadequate pituitary stimulation to signal adrenal glands due to a tumor. Also, there is a tertiary type of adrenal insufficiency that is even more rare. Tertiary adrenal insufficiency results from the inadequate secretion of CRH-cortisol releasing hormone. Secondary and tertiary adrenal insufficiencies only affect cortisol secretion, because ACTH (Adrenocorticotropic hormone) plays a very minor role with aldosterone. The physiologic levels of ACTH sometimes regulate the minute-to-minute fluctuations of plasma aldosterone.
The only difference in treatment is primary addison which normally needs two steroids: glucocorticoids and mineralcorticoids to function properply. Mineralcorticoids help kidneys retain sodium or they will urinate constantly over every sip of water; the glucocorticoids (hydrocortisone or predisone) to increase their cortisol levels to normal so they can respond to stress, illness such as the flu, surgery, etc. Plus, they have to add salt water when taking the mineralcorticoids, namely,( florinef) or the drug will not work properly. Getting the glucorticoid/mineralcorticoids ratio in balance is very challenging to say the least. It varies among each individual. However, there are a few people with secondary adrenal insufficiency that may need some mineralcorticoids (florinef) because they have some other underlying disease causing autonomic dysfunction, but normally SAI does not need mineralcorticoids.
In my experience, the salvia test was ever accurate because I have Sjögren's syndrome which causes very low salvia and depleted moisture through out the body affecting eyes, vagina,digestive tract, joints, and other organ. People with deficient hormones (estrogen, dhea, progesterone) will also be low in salvia so the cortisol salvia test is not 100% accurate. It is best to do both test ACTH Plasma test, morning Cortisol, Androstendionone, Dhea, Pregnenolone and 17- hydroxycortisone along with 24 hour salvia cortisol testing. Then if these are low then an Endocrinologist will then proceed to an ACTH Stim test, which normally takes a couple of hours. It is hard to get an Endo to perform a ACTH Stim test, I guess because the test is expensive, hard to get and often find it is not needed because they think all adrenal diseases are Rare!
There are a few more cases where a person can develop adrenal disease such as congenial hyperplasia, tuberculosis (now rare in US), metabolic failure suppression of hypothalamic-pituitary axis from certain drugs like long term use of diflucan or ketoconazole (antifungal), metapyrone and also with systemic candidiasis, and histoplasmosis, but depending on where you live.
There is growing evidence that coalescence of genes are growing together through random mixing affecting the hypothalamus pituitary axis triggering chronic fatigue and this is not Addison's disease. So now I can understand the Endo's perspective after looking at numerous studies. Also, certain bacterial/parasitic and viral infections trigger symptoms of chronic fatigue/pain as seen in Lyme's disease or Fibromyalgia so there is a growing problem with adrenal issues, but seems to be affecting women more than men so the sex hormones, particularly estogen play a role as well. Some adrenal diseases are extremely life threatening and some are not, but still needs to be treated to improve their quality of life.
The other problem is defining the chronic fatigue. Tiredness or fatigue is not a symptom that defines any one particular disease, but rather a symptom of many different diseases and conditions such as anemia,SLE-Systemic Lupus, ALS-Amyotrophic lateral sclerosis. According to Professor Garth Nicholas at
(http://www.immed.org/fatigue_illness_research.html) chronic lymes disease and other chronic diseases which were not diagnosed properly or caught in time, as with MS or Ankylosing Spondylitis and so forth cause a dysfunctional hypothalmus pituitary response due to multiple coinfections. So proper testing that involves several different methods is best. Very sad that with all of our technology that scientist or doctors can not diagnose or treat these disease properly. I just do not believe it and think it is done on purpose! We do not live in such a perfect world as we are lead to believe!
I hope everyone finds some kind of relief, remission or possibly a cure.
Warm regards and lots of Hugs!
I am 52 with addison disease and have had it since I was 16. I have to take two steroids through out the day just to live or risk going into adrenal crisis. I have at least one adrenal crisis a year usually from the flu and they are not fun, but very scary. Every time, I either inject myself with 100mg of solu-cortef or ambulance comes and takes me to hospital. I have lived with this disease for 35 years and have found that many Endocrinologist's that I have spoke with have never even treated someone with primary adrenal insufficiency (Addison's), Sad, but true. They seem to treat a relative adrenal insufficiency or temporary- secondary adrenal insufficiency due from when a person was given steroids like for pain as in rheumatoid arthritis or lupus. When the person tries to come off their adrenals are sluggish and do not respond as well, so a doctor may put them on a physiological dosage of 15mg hydrocortisone temporarily. Afters several months they are slowly weaned off. In some instances their adrenals never return to normal and they may need to stay on this dosages.
Regular secondary adrenal insufficiency (Secondary Addison's) is also rare because there is inadequate pituitary stimulation to signal adrenal glands due to a tumor. Also, there is a tertiary type of adrenal insufficiency that is even more rare. Tertiary adrenal insufficiency results from the inadequate secretion of CRH-cortisol releasing hormone. Secondary and tertiary adrenal insufficiencies only affect cortisol secretion, because ACTH (Adrenocorticotropic hormone) plays a very minor role with aldosterone. The physiologic levels of ACTH sometimes regulate the minute-to-minute fluctuations of plasma aldosterone.
The only difference in treatment is primary addison which normally needs two steroids: glucocorticoids and mineralcorticoids to function properply. Mineralcorticoids help kidneys retain sodium or they will urinate constantly over every sip of water; the glucocorticoids (hydrocortisone or predisone) to increase their cortisol levels to normal so they can respond to stress, illness such as the flu, surgery, etc. Plus, they have to add salt water when taking the mineralcorticoids, namely,( florinef) or the drug will not work properly. Getting the glucorticoid/mineralcorticoids ratio in balance is very challenging to say the least. It varies among each individual. However, there are a few people with secondary adrenal insufficiency that may need some mineralcorticoids (florinef) because they have some other underlying disease causing autonomic dysfunction, but normally SAI does not need mineralcorticoids.
In my experience, the salvia test was ever accurate because I have Sjögren's syndrome which causes very low salvia and depleted moisture through out the body affecting eyes, vagina,digestive tract, joints, and other organ. People with deficient hormones (estrogen, dhea, progesterone) will also be low in salvia so the cortisol salvia test is not 100% accurate. It is best to do both test ACTH Plasma test, morning Cortisol, Androstendionone, Dhea, Pregnenolone and 17- hydroxycortisone along with 24 hour salvia cortisol testing. Then if these are low then an Endocrinologist will then proceed to an ACTH Stim test, which normally takes a couple of hours. It is hard to get an Endo to perform a ACTH Stim test, I guess because the test is expensive, hard to get and often find it is not needed because they think all adrenal diseases are Rare!
There are a few more cases where a person can develop adrenal disease such as congenial hyperplasia, tuberculosis (now rare in US), metabolic failure suppression of hypothalamic-pituitary axis from certain drugs like long term use of diflucan or ketoconazole (antifungal), metapyrone and also with systemic candidiasis, and histoplasmosis, but depending on where you live.
There is growing evidence that coalescence of genes are growing together through random mixing affecting the hypothalamus pituitary axis triggering chronic fatigue and this is not Addison's disease. So now I can understand the Endo's perspective after looking at numerous studies. Also, certain bacterial/parasitic and viral infections trigger symptoms of chronic fatigue/pain as seen in Lyme's disease or Fibromyalgia so there is a growing problem with adrenal issues, but seems to be affecting women more than men so the sex hormones, particularly estogen play a role as well. Some adrenal diseases are extremely life threatening and some are not, but still needs to be treated to improve their quality of life.
The other problem is defining the chronic fatigue. Tiredness or fatigue is not a symptom that defines any one particular disease, but rather a symptom of many different diseases and conditions such as anemia,SLE-Systemic Lupus, ALS-Amyotrophic lateral sclerosis. According to Professor Garth Nicholas at
(http://www.immed.org/fatigue_illness_research.html) chronic lymes disease and other chronic diseases which were not diagnosed properly or caught in time, as with MS or Ankylosing Spondylitis and so forth cause a dysfunctional hypothalmus pituitary response due to multiple coinfections. So proper testing that involves several different methods is best. Very sad that with all of our technology that scientist or doctors can not diagnose or treat these disease properly. I just do not believe it and think it is done on purpose! We do not live in such a perfect world as we are lead to believe!
I hope everyone finds some kind of relief, remission or possibly a cure.
Warm regards and lots of Hugs!