I am hoping for some help. yesturday found out I have low cortisol levels (I never asked what the # was). I was given dexamethasone to take at 11pm and had the blood test at 8am the next morning. I have been hearing alot of talk about having to deal with this myself, that most doctors will not perscribe medication if my levels are not that low even though I am suffering. my primary care physician is afraid to treat me so she is sending me to an endocrinologist. I rarely ever got sick and for the past 4 years thats all I have been, I can not even work anymore nor can I motivate to do anything let alone deal with this myself. Is this true? Is there a possability I will have to do something about this myself? What meds do they usually perscribe for this? what should I expect to happen and how long will it take for me to get better. I have just had enough of being sick.
The doctor gave you a test for HIGH cortisol levels and you posted for low cortisol levels so your symptoms must be what?
Your test was for Cushing's syndrome, not AI... you need to see an endo, but you need to see the number. You also need to test cortisol - just plain cortisol - at different times of the day but now you have to wait a week or two until the dex is gone. Your doc did not help you much. Did you feel better on the dex or worse?
To cure AI, you take replacements - such as dex but usually hydrocortisone as dex will eat your bones, etc. For Cushing's, you have to find the source of the high cortisol and remove it. As they have overlapping symptoms - except weight - it is hard to tell them apart sometimes.
2 vials of blood were taken, I have no idea what the sencond was, the first was to check my cortisol levels (which is what the doc told me) she called 2 days later to tell me my cortisol levels were low, I never even heard of adrenal insufficiency or cortisol levels until I did minor research online and talked to the doc about it briefly
I am waiting for the endo to call with an appointment for me, unfortunatly I can not call my pcp until after the new year so am going to ask endo for numbers. as for the dex, I had stomach cramps so bad on it I was crying. then again, I get bad side effects of alot of meds I have taken, and will never take that again
my symptoms are many; severe fatigue, weight gain, headaches, muscle weakness, body pain, dizziness, IBS, breathing difficulties (asthma, sleep apnea), clumsiness,nauseousness, heart palpitations, sweet cravings, depression, memory loss, confusion, cold intolerance, l;ow stamina, stomach issues, irritability, low libido, and many more.
my doc has done multiple tests since august when I started seeing her, she found a vitamin b-12 deficiency as well and has been doing all she can to help me, I have had multiple blood work, had an MRI and was sent to a neurologist. this is the first initial test to check cortisol levels and she has refered me to an endo. she did this test when after 4 months of being on vitamin b shots and vitamin suppliments my fatigue and other symptoms got worse.
I wonder why if she gave me a test for high cortisol that it came out low, is this a bad thing?
The doctor telling you have low cortisol after a DST is rather misleading. The dex is what lowered the cortisol. What happened really is that you suppressed on dexamethasone - so the doctors, most doctors, are going to dismiss your symptoms and illness.
I had Cushing's and failed (suppressed) on the DST as well, but I still had it. I know hundreds of people like me. Weight gain etc. etc. all sound like high cortisol, not low - so your doc gave you a test for Cushing's - a very unreliable one - and is going to call you normal. Now you need to get other tests like urine and blood tests to see what is going on.
You need an expert to find out what is going on. Read up on what Cushing's syndrome is and how it is diagnosed. You need to be as smart as the doctors (not hard as most of them have nary a clue).
I write as someone with low cortisol approaching Addison's Disease.
I suffer no weight gain and I take hydrocortisone daily for over a year now!
You mention you had a MRI. What did that reveal? May I suggest you seek TWO neurological opinions on what it reveals. My first neurologist misdiagnosed what he saw. Lucky for me I ALWAYS obtain another opinion. My MRI showed a mass that was responsible for my daily (when waking up) headaches.
In the first instance I suggest you follow Rumpled's advice and get the Dex out of your system - stop taxing Dex for 2 weeks - before testing for cortisol. And test it at 8am and 5pm the same day. Whatever the tests show will give you more information so that you can have further investigations along the right lines. While you're testing for cortisol check your other hormones as well.
I was there while the neurologist was looking at my MRI, he was concerned about something he saw and studied it for a few, then dismissed it as nothing, this was done befor my PCP checked my cortisol level. I just called the neurologist after reading your response and asked him to check it again, he will be getting back to me by the close of the day tomorrow. thank you for this info.
Have you tried Isocort? I took a saliva test you can order one online at ZRT Laboratories (http://www.zrtlab.com/test-kits/saliva-testing-kits.html) which will show your cortisol levels at 4 intervals throughout the day. Mine were extremely low, but I have been noticing far more energy since I began taking Isocort just a week ago. I actually woke up this morning without feeling exhausted!
There's a wealth of information about both adrenal fatigue and related thyroid issues at http://www.**************************.com/adrenal-info/how-to-treat/
recieved results form cortisol test today, and said it was less than 1 which, from what I have read, is normal (you called that one). I will be taking your advice and asking my PCP to do the other tests seeing as the endo can't see me til end of february and symptoms are getting worse everyday, I can't wait that long. so thank you, if there is anything else I may need to know, I would appreciate all the help I can get, after all, I am new at this.
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