I would read up on cyclical Cushing's. When you have a loss of diurnal rhythm, that is Cushing's syndrome. BTW low cortisol levels at midnight is normal. A normal cycle is to drop to low during the night so you can be swinging from high to low which makes you sick. It is also very painful.
I would find an endo to find the source of the elevated cortisol and resolve it. The fatigue is probably as well in large part the cortisol - both too much and too little cortisol have fatigue as a symptom.
Thanks for the info. I'm almost 100% positive it's not cushings or cyclical cushing's though as all my problems stem from a HUGE stressor I'm currently going through with a family situation. The stress causes my EBV antibodies to skyrocket, stops the conversion of my thyroid, and then obviously affects my adrenal glands. My tests all indicate an acute stressor causing my adrenals to respond both with cortisol and DHEA. My fatigue is caused by my hypothyroidism combined with chronic mono (EBV). When I'm able to get my stressors down and then my antibodies reduce and my thyroid starts working correctly then it all gets balanced out and the fatigue and other symptoms go away.
I'm pretty much done with Endos so I'll talk to my current docs (have to wonderful dr's that have finally helped me with everything). I suffered undiagnosed for 3 years and went through 20+ doctors to find someone who finally let me do a trial of thyroid when I got sick with mono the first time. Then went I got sick again with mono it took another year and 5 more doctors to get diagnosed again. It's a very complicated case but at least I finally have someone on my side to help.
I think I'll ask to do another 24 hour cortisol test showing multiple times of the day. My morning is always high but the evening is sometimes way way low (even too low for that time of day) and sometimes high. I've read also that if it's too high it could be dropping my blood sugars too low in the middle of the night and that's what's causing the symptoms. I've also read that if it's too low the body tries to compensate by producing adrenalin and then causing my symptoms. It could be either one so I think it would be best to test again and maybe even seen what it is specifically at that time of night when I wake up. Probably best to test my blood sugar too while I'm at it.
Uh - elevated cortisol is Cushing's - plain and simple. It comes in different packages which makes it difficult to diagnose. I had it myself. I know many with it as we network a lot. I even know people like you that swing from high to super low. This compromises your immune system - I know as I had that as well. The even sent me - as a non-HIV person to an HIV specialist to see what he could do and he told me I was a worse healer than his AIDS patients. Cortisol impacts the thyroid, bone, connective tissue, etc. etc. It also does effect glucose - most get diabetes. I have not heard of adrenalin - that is another hormone entirely but the changes in cortisol from low to high make you feel weird... It can effect the heart too by way of sodium and potassium by effecting renin and aldosterone.
You have met doctors that don't know the pituitary from a hole in the ground - and while that is sad, it is very typical and why it takes most of us a decade to get diagnosed. You can cut the time off that by being persistent, and by finding doctors that do treat pituitary by going to pituitary centers. There are still duds there so you have to research, get copies of everything, and be on top of testing to make sure the doc is testing appropriately... test timing, lab error etc. can make diagnosis delayed too.
If it is cyclical cushing's is there something specific I can do to lower my morning cortisol? I'm going to do another 24 hour test showing the different levels throughout the day and then go from there. When they tested me for cushing's all the other times they only did a 24 hour urine test (collected from the entire day) and then pin point blood tests that both came up perfectly in range- most likely because I do dip from high to low throughout the day so overall I don't produce enough to be considered high cortisol on those tests.
I do know I have issues with my pituitary as many systems it controls I have problems with. In addition to the thyroid issues and cortisol issues my body doesn't produce adequate progesterone and my LH and FSH are all out of whack (I'm unable to have children due to my female problems in addition to the chronic mono that would likely go completely haywire if I could even get pregnant).
When I get sick my blood sugar does get high- even though I eat EXTREMELY healthy (organic almost 100%, no processed foods as I'm allergic to so many things it's ridiculous). Part of it is the dramatic weight gain I experience when I get sick- 50 lbs in 3 months! No amount of dieting/exercise can control it. My metabolism essentially slows down way below starvation rate- had my metabolism checked the first time I got sick and the girl looked and me and said she couldn't believe I wasn't fat with a metabolism that slow (I'm normally very thin so 50 lbs puts me at the highest weight in the "normal" range just slightly below what is considered "overweight). The weight definitely causes me problems though- affects my blood sugar, adds to the fatigue, has destroyed my veins in my legs (now have to have surgery to fix them since I'm getting so much pain). Too many times doctors just think it's superficial but when it causes health problems that's what I really get concerned about even more than just feeling terrible about the way I look.
I just have so many things going on that it gets very complicated to know what exactly is causing what. The only thing I do know is that I have chronic mono which goes away when my immune system finally is able to control it and comes back when I get very high levels of stress. And, when the mono reactivates all my problems happen. When the mono is in remission I'm healthy, thin, sleep well, and don't have any of these health problems that come with the thyroid, cortisol, or other hormone issues.
There is nothing OTC that one can take to lower cortisol. They are coming out with meds and there are is one out now that can be used short term but it is typically used to lower levels prior to surgery to lessen symptoms. If you are on a medication that lessons or takes away cortisol, you have to then be on a replacement as too much and too little, as you have experienced - it horrible. It is also dangerous.
I would also fail 24 hour tests as my high were high but my lows were so low it canceled out the highs - so I can relate. The doctor has to do more testing as well as test you at different times of day. There is a 10 hour urine test that only tests at night that helped me a lot. You have not found the right doctor - one urine test is not the way to test for anything!
The one that did the 24 hour urine test was a couple years back- she was absolutely horrible! Gave me incorrect information for everything and I got sooooo bad while in her care because of the changes she made me make on my meds. It was after seeing her that I gave up on Endos and searched for a good DO and alternative doc to help me through. Both have been wonderful to date and have tested everything I have asked when I have questions. I like them because they treat the whole body as a complete system rather than focusing in on one thing and not taking into account how that one thing both affects and is affected by other parts of the body. I just haven't ever brought up the cortisol issue with them since after finding them I found out I had mono again- the same thing that caused all my problems the first time around. Also, I wasn't having many problems with the cortisol issues until recently when my mono has really flared up. I was getting a hold on it and my antibodies were going down and I was feeling great but have been dealing with a MAJOR stressor that brought this all about again. It takes me well over a year though to get the stress levels back down every time I get this way- that's not normal. I'm going to see what tests they can run right now as a first step before I search elsewhere and then go from there. Good to know on the 10 hour cortisol test. I wonder if they can run one in the morning hours too when mine is super high- I'll have to ask.
Also, I am on thyroid medication and all the info on it says if you have adrenal issues that the meds will make you feel both hypo with symptoms as well as hyper due to the adrenal problems not being addressed. I know stress is causing all this to happen so right now I'm not touching my thyroid meds because I don't want to worsen the problem. I'm going to see a counselor to help me deal with the emotional issues due to this stressor and then the physical symptoms I experience since my body can't cope right and hopefully she'll also be able to help me stabilize this stress so we can work on the cortisol issue without dealing with the extra problems it causes.
Thank you so very much for all the useful information- I appreciate it sooooo much!!!!