high cortisol, low potassium, high blood co2, malignant circadian hypertension

Seems I have some rare condition but medicine does not know it.  

Symptoms .. I have Trunkal obesity and it is very hard to lose weight.

I was underweight and skinny in my twenties and earlier.  As I said before I gain wieght in my early forties,

I get mentally stressed easily ... I am too tense! The skin on arms is starting to thin like my fathers and grandmother that had the same condition.  It will become paper thin and easily hurt. I do not have a buffalo hump

Only the Alpha blood pressure meds seem to blunt my hypertension and then not well.

I always wake up in the night and often I am very awake, I can get up and clean house at 4am , and then at 5:30am go back to bed and sleep.

With Bloodpressure meds Last evening at 8pm my BP was a typical 135/80 (not bad) this morning at 8am it was 200/110 also typical.  .  My cortisol is just over the "normal" range limit when measured at 3am and 9am.  Whatever I have is inherited but dispite testing 10 years ago by UCLA endrocrine they found no smoking gun.  Testing again 18 months ago found nothing. 

Questions ...

1.What do you think in the way of tests a doctor should do?

2. As Dexamethasone makes your Cortisol go down does it also make your BloodPressure go down?

3. If your bloodpressure is untreated how high is it in the morning? In the evening?

Magnum guy

Without the Buffalo hump I doubt this is Cushings, if it is Cushings you would be really rare indeed. With your cortisol not high, is another sign that it isn't cushings. When my cortisol was high it was like over the moon high, insane high. Then the next test mine would be fine. I know this is so frustratung. With the paper thin skin and the gaining of weight, the anxiousness, the getting up in middle of night to clean in a frenzy, then being exhausted, these symptoms are cushings symptoms. I would sleep for 3 days. So tired I couldn't get up, then I'd be like I took speed and could be superwoman and complete many, many tasks and not sleep. My personality when in the frenzy mode was upbeat, talked very fast. When in the exhausted mode I was depressed, didn't want to talk, bitchy, sleepy, bad mood. I also had weird appetite, could eat like a horse, starved, then I got where I couldn't eat. I'd eat 3 small jars of baby food a day, was throwing them up. I was little for my age, at age 3, i'd ask to go to bed. I only weighed 89 lbs at my high school graduation. I went from 110 lbs to 276 lbs in a 6 month period, I had,a "moonie" face, round Ike a pumpkin, the Buffalo hump was very prominent, the rapid obesity, the high cortisol blood and urine , although they would go up and down randomly, which is cyclic cushings, the mood swings and personality fluctuating like a yoyo. So I find your symptoms baffling as part are cushings and part are not. Are you in the USA or in a different country? Do all the tests they give you. Write down all the results from the beginnng of testing. Compare these so you can get,an idea of the fluctuation of the tests, and see.any unusual .trends.

I wish I was more help, I'm praying for you I know how difficult it is to not get any diagnosis for years, and be so sick

thank you for your reply.  I am not super sick I am not way out of the normal ranges.  Except for my hypertension which clearly malignant.

Saw a kidney doctor who has been prescribing blood pressure meds last week.  When I saw him at 4pm at was 165/95 ... not good but not horrible.  I bring in a medical study which might be like me, we talk, just a bit stressful as he tells me we will not give me a trial of dexamethasone.

He measure my blood pressure again so we can compare with my wrist cuff.  The numbers are the same and are like 220/110.  He has referred me to Texas Endocrinology.  I have been this path, so I will try it again but I think they will find nothing of significance and not be able to help me.  I even wonder will they try blocking my cortisol with dexamethasone to see if it lowers my hypertension?  When you are outside medicines experience then medicine does not server you well as medicine can not experiment on you.

  I almost surely do not have cushing or at least "serious cushings"  but I do have something homonally wrong with me, the hypertension is dangerous it will likely wipe out my kidneys  by the time I am in my late seventies, it also threatens my eyes.

What is your blood pressure like? 

I have never really had a high blood pressure problem, usually too low, I have gone in to surgery with it 90/60. I have also awoke in recovery room with it so low that it was.dangerous. I am older now, 65. When I had my first pituitary surgery I was 38 years old. So my blood pressure is usually like 120/70. My vital signs are usually excellent. Having high blood pressure is dangerous yes. Try this; to lower your bp, close your eyes, relax and think of someplace very peaceful, then start breathing through your nose, breath in slowly and then let it out slowly, do this for about 3 or 4 minutes, then check your bp, it will be lower. Stress can really play havoc with your bp. If possible, start taking walks away from the stress of the day, it will help your mental stress but also will help with bp. Just walk in your leisure, not power walk. Try to look toward your new endocrinologist appointment with hope that this one, hopefully a new dr, can look at your issue with new eyes. I wish you the best and pray for your diagnosis.