Overweight with particularly rapid weight gain in last 12-14 months
Constantly feeling cold (used to be warm-natured)
Various aches and pains - hands, feet, legs particularly
Digestive issues: chronic constipation, swollen esophagus, lactose intolerance, frequent stomach pain
Emotional issues: depression, anxiety disorder, OCD
One of the abdominal xrays checking on constipation showed his left adrenal gland has a calcification. It was mentioned incidentally.
I took him back to our family doc, and he's just run a blood test, and said the cortisol levels were slightly low. He's running an ACTH test now to see if it is high (meaning the adrenal gland isn't performing as it should).
However -- wouldn't low cortisol lead to underweight, not overweight?
What time was the cortisol test taken?
There is the diurnal rhythm and if your doctor was intelligent, bells should be ringing in his head that the kids rhythm is off, so that he is too low during the day, and probably too high at night, and that is where the damage is being done.
He should see someone that knows about Cushing's syndrome. The pains can come from the cortisol coming and going - it hurts!
Testing is a pain... but I had Cushing's disease where I was cyclical and only high at night when I was high, and it was hard to catch even though I looked and felt awful. You need to find the right kind of doctor.
The blood test was during our appt, which I think was afternoon -- 3:30 or so.
He didn't give me a number, just said it came back slightly low, and now they are checking for ACTH levels -- if that's high but cortisol is low, that would indicate adrenal gland not functioning correctly. That bloodwork was drawn yesterday around 1:45 PM. The MRI of the adrenal glands is on May 14. It's his left on that has some kind of calcification - and the doctor (I didn't like him) that mentioned it tossed it off as unimportant, something that could have happened during birth.
That's very interesting that you can have Cushings but not be high all the time -- that's good to know, because I was hopeful that we're at least on the trail of the actual problem, and not running down another dead end, but when he said the cortisol was low, my spirits sank, since his symptoms line up better with Cushings than Addisons (at least from what I found googling, not a medical degree).
I know everyone here will probably sympathize with what a long road we've been on, seems like forever! I feel like I'm holding my breath until we get more test results. One thing I know -- and yes, I realize he's got some emotional stuff going on, too -- but I think there is something physical at the root of it, not just psycho-somatic like the pediatric GI doc was ready to toss it of to, so we're going to keep pressing on until, hopefully, we find something.
When you say the cortisol comes and goes and it was painful, can I ask where/what way you had pain? He complains of bad headaches a lot, and pains in his hands, feet, and legs. And, of course, the stomach stuff. A year-plus ago he had stress fractures in both legs just below the knees, but those have been checked off as okay now.
3:30 is a ...bad time to test, as well as 1:45. The best times to test are 8am, fasting, and midnight. Afternoons are very difficult as cortisol is lowering anyway.
I had Cushing's and my cortisol was all over the place - Cushing's is inappropriate cortisol so it can be cortisol at night. Even now, post op without my adrenals, I still look a bit Cushie and it looks like I still may be producing a bit of my own cortisol - and again, at times when I should not. Some doctors want super high ranges and silly things, but the damage is done when the body does not "rest" and muscles and bones do not develop properly and even cateracts and sometimes bone necrosis happens. That is why he has stress fractures. Cortisol eats bone.
BTW, GI, symptoms are typical.
It hurts - everywhere. They use corticosteroids to treat inflammation, well, when the steroids recede and the inflammation comes back, it hurts, like heck! So to have that happen all the time, when you cannot control it, is crazy. Actually, when you have high cortisol, you feel good, and that is when you should test, and when you feel awful and achey (achy), is when you are low. The headaches may be from a pituitary tumor. Up to 40% will not show up on a MRI scan. It has to be done properly - dynamic. Dye injected while pics are taken A 3T machine helps now too.
I called the doc's office, and got the bloodwork results verbally -
Of course, we already know the 3:30 pm cortisol level was low, and we did the follow up a few days later at 1:45 - for what it's worth, the follow up test showed "normal" on ACTH level.
Average blood sugar was normal (we were concerned because we'd tested him at home, and he had a weird spike of 220, but it was while eating)
He's slightly anemic
His cholesterol and triglycerides were very high - 243 & 292 respectively.
Of course, we're going to do the MRI tomorrow and get those results on the 18th, but he is also recommending a pediatric endocrinologist follow up on the hormone results. I think he expected ACTH to be high, if cortisol is normally low -- but as rumpled has already commented - a point-in-time cortisol level isn't the whole story by any means.
I don't know - the phone nurse just said slightly anemic. I started him on a multi-vitamin, figured it couldn't hurt, and the anemia can lead to feeling cold and fatigued, too, I think. Going to ask on Monday if any of his prior bloodwork showed any signs of anemia.
He had his MRI this morning, we go Monday to the family doc for the results, and I have an appt on Tuesday with the endo.
With his average blood sugar okay, I don't think they will call it diabetes -- I know he had that weird spike, but he literally was eating when my husband took it, and who knows if a spike under those conditions are normal or not.
Can anyone assist? I have been riddled with nausea for almost 2 years now. I have been in and out of the ER and Drs. offices for just as long! It was suggested that it was my gallbladder even though all the tests came back fine! I agreed to have it removed as I was desperately desperate! In the meantime, I got worse and worse. I recently changed ALL my Drs. and the Gastro. Dr. found low AM cortisol (I am waiting for the results of biopsies from endoscopy). I went to the ER last night 6pm as I was experiencing extreme fatique, immense body pain and dizziness. They found nothing except low MPV level. I am waiting to see the Endo Dr. who "has seen nothing in faxes that the other Drs. have sent thus far that would lead them to believe this is a metabolism issue." And it is because of this, I am not even sure the Dr. will meet with me.
I strongly feel this is a cortisol/adrenal gland issue and yet it seems no one will listen. It seems to take forever to get into an Endos. office and I am in a state of fear right now and that is definately hard for a strong independant woman like myself! Any suggestions out there?
Awwww... the doc is already set against you with that comment... with the low cortisol he wants to see that the sodium and/or potassium is off too which would confirm that it is adrenal in nature - that would wrap it up in a bow for him, he would not have to think...
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