Adrenal Insufficiency Community
1.32k Members
Avatar universal

Low ACTH/Cortisol - could this be a pituitary tumor?

I have gotten some test results back and am trying to make sense of them while waiting to hear back from the doctor. My ACTH was very low - <5 (scale starts at 9) and two different cortisol tests showed it was low. They had me come in today for the ACTH stim test and called me back to tell me that those results were all normal. So my understanding of that is that my adrenal glands are working fine, and it is something with my pituitary gland, correct?

My doctor initially said that she was thinking this was due to my taking steroids a few years ago (which honestly doesn't make sense to me, because the symptoms don't seem to fit, and I don't understand why it would suddenly appear 2 years after stopping the steroids).

I have been wondering if perhaps this might be a tumor that was missed last summer - one day, I suddenly started feeling dizzy and nauseous. I had an MRI and they said it was fine (they were looking for MS). I was diagnosed with a vestibular migraine and they said something was off with my vision. I have been dizzy every day since then, and in the last two months, have had a whole host of other symptoms: fatigue, weakness, shortness of breath, yellowing complexion, hair falling out, diarrhea (sorry), my foot broke for no reason, memory and concentration problems, inability to tolerate heat or cold, loss of appetite and weight loss, and the occasional terrible headache... and the dizziness has gotten much worse. i know these symptoms could be a lot of things.

does anyone have any experience with this or any thoughts? i am going crazy waiting for the doctor to call me and trying to figure out what it all means...

thank you.
2 Responses
Avatar universal
If the lab did not handle the ACTH correctly then low tests can often be attributed to lab error. It needs to be in a chilled tube and spun quickly (the lab I go to let's it sit now for 30 minutes...) and the more it sits after the draw the more it degrades. So if your samples were sitting around...

You have to get a copy of your stimulation test to see what that was as some doctors have a magic number to hit and others want a double of baseline. So it would be helpful to see what you had.

How are your sodium and potassium readings? Yellow complexion makes me think liver, was that checked?

The MRI for MS would have found a brain tumor but maybe not a pituitary one... I would ask to get copies of your tests and follow up. Sounds very hormonal and not brain tumor to me as a fellow patient. I hope the stim test was at 8am.
Avatar universal
Thyroid and/or adrenal issues, can make you feel like crap. Please make sure you follow up with a Dr that will do all the testing you need. Someone who will break things down for you.
Have an Answer?
Top Thyroid Answerers
Avatar universal
Avatar universal
Northern, NJ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child