Okay, I posted some stuff a while back, right after one endo diagnosed me with adrenal insufficiency. He put me on dexamethasone, but within 5 days, I was flying on a manic high that would not quit. It was awful. He called it steroid psychosis and took me off of it and put me back on hydrocortisone.
But he had already told me that the hydrocortisone he had me on before was too low, that my 24-hour urine was still low, but when we called with the problems with the dexamethasone, he just put me right back on the same dosage and such of hydrocortisone and said he'd see me again in AUGUST! That's three months away, and I'm still having major problems.
So we found a new doctor and saw him today. He looked at my ACTH stimulation test, which was:
Baseline 4.9; 30 minutes 13.8; 60 minutes at 14.4
So this new doctor now tells me to stop taking all steroids. He doesn't think I have AI - he says because I'm overweight, the ACTH stimulation test can be wrong... but then he turned around and has ordered me another ACTH stimulation test. I don't have insurance. That's a $500 test, and he already told me in his office that because of my weight, the test isn't accurate.
He said to come off my steroids... he didn't say anything about weaning off, he just said, "You're only taking 30mg of hydrocortisone per day, and that's about 5-6mg of prednisone, so you should be fine to just stop taking them."
The problem is, I know from past experience, pain and inflammation and nausea all come back when I come off the steroids. He says, "Cocaine makes people feel better too, but people aren't low on cocaine in their bodies. Just because the steroids make you feel better--they make everyone feel better--doesn't mean you have adrenal insufficiency."
So I have one endo saying I do; one endo is saying I don't. One is saying take steroids but won't titrate the dose and the other is saying not to take them at all. One wants to repeat a very expensive test I've already done even though he said the test probably won't be accurate due to my weight. He also says the fact I am overweight and gaining weight still is the #1 reason he doesn't think I have adrenal insufficiency.
Is this a doctor who is just biased against obesity or is there anything medical to what he's saying here?
The rapid and excessive weight gain and fluid retention was one of the very first symptoms I had that prompted me seeking treatment four years ago. I'm not sick because I'm fat - I'm fat because something is wrong with me. I measure and document everything I eat and I don't cheat. I have the records to show, but no one seems to believe me.
I'm so frustrated and confused.
Looking at the stimulation results - isn't 4.9 in the morning really low? Isn't 14.4, the point I get after stimuation, still low?
This same endo also said it couldn't possibly be a pituitary issue, because my TSH was high - and the TSH can't be high if my pituitary is off.
He seems really smart. He says he'll help me figure out what's really wrong with me (and he thinks it's my heart, but I'm afraid that is again an obesity bias, because my heart has been fine as far as any other doc can tell, but he thinks the fluid retention and edema is from my heart...)
I'm so frustrated and confused. Anyone have any insight?
Having a low cortisol in the morning, sadly, does not mean anything unless you test cortisol at other times of the day - given the weight issue...
Rapid weight gain etc. sounds more like Cushing's - so adding steroids to that yes, would make you crazy. And you could have low cortisol in the morning. But you don't say what you have at midnight, or at other times... AI causes weight loss - elevated cortisol causes weight gain but it can be tricky to find the cause and the cycle of the elevations. Not everyone has every symptom.
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