I started taking my 1.5mg prescription 5 days ago. I'm not noticing a huge difference yet. I'm instructed to be at this dose for 2 weeks, then double it to 3mg by taking two pills instead of one. I feel like I should just double it now since I'm tolerating it well and I'm not feeling much effect. I'm taking for mold illness symptoms and chronic fatigue of course much worsened by the mold illness.
I've struggled with severe fatigue episodes my whole life. I'm 28 F.
I'm still working with several different doctors to try and figure out why. I don't have Lyme or any other known issues. ANA technically was positive but very low positive that didn't warrant further investigation by my PCP. In my continued and increasingly desperate search for help, I have consulted with an alternative medicine MD this year. I'm coming to this community for help because I've had conflicting cortisol test results.
I have had a lot of symptoms of adrenal insufficiency since my childhood however I understand it could be something other than adrenal insufficiency. But in this year's testing while my symptoms have continued to severely worsen predominantly assumed due to several separate situations of severe stress, I am unsure how to proceed.
No one has ever though to test my cortisol levels until my alternative MD did this year. He did one fasting AM blood cortisol test which was 10.9 in July. Then again in July by his orders, I did a 4 point saliva cortisol test which levels were AM-PM: 5.5, 3.2, 1.5, and 6.8. Obviously much lower than my blood test. Then now in September I still have no answers, and I got another AM cortisol test done today which was somehow 17.5 despite the last several days of another severe episode of fatigue/weakness/low sodium symptoms. I am so confused. What do I trust? If I do have some kind of adrenal insufficiency, why are my blood tests more in "normal" range yet my saliva test was low? Do I not trust the saliva test? Could it be possible I could have adrenal insufficiency but my blood tests are inconveniently capturing the wrong days where I feel better? How am I supposed to move to a diagnosis when my lab work is all over the place? I feel like I don't trust that saliva test because my blood tests were not that low both different times. What has been your experience with these things?
Symptoms:
Bad achy legs throughout childhood
Depression episodes in very early childhood unexplained
Severe unexplained episodes of fatigue/anxiety/depression into and through puberty
Nausea/extremely "depleted" feeling after working 12 hour shifts last several years
Hospitalized last year after the first 3 hours of only vomiting, no diarrhea-due to norovirus, due to feeling like death/nearly losing consciousness/tachypnea/severe "kidney" flank pain enough to warrant a CT scan that admission which was fine and no kidney infection.
Increasing inability to tolerate stress/change of any kind over the years
Unexplained weight loss of over 20 pounds this year whereas before it wouldn’t budge no matter what I did.
Newly diagnosed ADHD but I think I've had it my whole life.
ACTH level this year is normal (not a stim test)
Joint pain (knees) random muscle aches, increased/mainly only present during severe fatigue episodes
What are we missing, does anyone have any insight? I'm going crazy and about to lose my job I worked so hard for because of all of this and testing is leading to nothing so far.
I started this year in February at 30mg. Didn't take it every day, usually took it only on work days for the first several weeks. So 2-3 times a week. Then around late March, early april I would take it most days because it was helpful with tasks at home. Went up to 40mg in April but only took 8 doses. It started making me really really flat and depressed. I was like I don't want to feel this way, it's defeating the purpose entirely. So I stopped taking it suddenly. Wow. Even just a few months of being on it, not even every day was enough to make me feel this bad when not taking it?! I'm sad for my brain. It already feels ruined. I've been depressed for weeks now and I don't know when the end is in sight. Its so hard to work without it. My brain doesn't work because of the fog. I took one the other day at work because I was desperate for a clear mind and any amount of energy to continue my shift. I opened the pill and dumped some out so as not to be the full dose. It helped me feel normal again. Is it best to go off cold turkey? Or "wean" down?