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Weight gain, fluid retention, on small amount of HC

My adrenal low dose stim test showed that my adrenal glands were fine. but my AM cortisol, was 3.5, under range.  The doctor said that this is a ACTH deficiency.  Secondary Adrenal Insuf.  I was told to take 20mgs of hydrocortisone.  I have never had low blood pressure, except sporadically, seldom. I have hasimotos, so i am inflamed too.
  I am extremely fatigued and puffy anyway.  I can only eat tiny amounts because my stomach won't digest.  i am holding 15 lbs of fluid..no kidding.  Then, they add HC and i balloon even more.  I cannot raise my thyroid meds, t3 only, because i get  hyper symptoms.
So, my dose is lowered to 15 mgs HC, same swelling.  I feel like i will pop. I have gained 3 inches on my waist in 2 months   My blood pressure goes from 170/110 to  maybe 130/82..it was once 117/72.  My belly is blown up.  My confusion is that before hc, i had a high pm cortisol of 12..but i was ill and very nervous.  My sodium is not low.  My pituitary is shrunken.  

I think i must make enough cortisol, but my pituitary does not release the signal when it should and when i need it,..does this make sense?.  

They think i have low growth hormone, but i have not been able to get a stim test.  I am unable to function, drowsy, puffy, weak..they say i have chronic fatigue syndrome and fibromyalgia..the HC, helps the pain, but that's it, i am much worse.  Any ideas here on this steroid type and dosing?

SAI, have normal aldosterone and salt retaining properties.  Apparently, the glands get enough stim, to keep them from atrophying, but that's about it.  

Thank you so much.  I think i will have to go back t o Boston, if i want the Gluageon stim test.  I do not feel my body would recover from the insulin tolerance test.

i haven't slept all weak, much forgive me if i sound delusional and confused. the anxiet is terrible..i need help and i cant get it.  

2 Responses
Avatar universal
Those are some odd results. Do you have copies of the rest?

There can be the possibility of cyclical Cushing’s, which makes low cortisol and high at times which is the worst of both (and many places will refuse to believe that hormones cycle, period.... haha) .

Are you on any other meds other that hydrocortisone?
Avatar universal
cortisol base, 3.7  ug/dl   9:45 AM

cortisol. 20 min  24.2

cortisol 60 min  16.0

Sometimes 9:45 am is my bedtime, sometimes not , i sleep and wake, all over the place..insomnia lasting weeks, then sleeping 15 to 10 hours a night or day.  I have no energy at all, drowsy all the time.  This may account for the low am cortisol.  Using the cortisol, has regrown some hair on my head and some eyelashes..that's all.  My pituitary is very shrunken.  The pm cortisol was not that high, really for someone, like me, i had been up all night, 2 hours broken sleep, by the time i had that labdb done at 4:30 pm, cortisol 12.
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