Desperate for my daughter- pituitary tumor?

Posted by sarahmaec @sarahmaec, Mar 11 7:01am

Hello,

My daughter is 14 and has always had health problems, but recently they've gotten very bad and specialists aren't helping much.

As a baby she had food protein induced entercolitis syndrome (fpies). She outgrew that at age 3. She's always had chronic Constipation. Over the years we've done elimination diets, gluten free, dairy free, vegan. She had an upper and lower scope last may that showed ulcers in her stomach, she took some meds and that helped. Still chronically constipated.

We moved to a new state 7 months ago, and the past, I would say, 4 months have gotten progressively worse. Constant stomach pain and nausea, pain that sounds like ulcer pain, but also general stomach pain. She's only pooping once a week, and even then it's with multiple stimulant laxatives. At the same time, her joints are getting weak and painful, to the point that she sometimes needs help up and down the stairs at home. Her hair is falling out, she has body acne, severe headaches, her jaw has started popping, all of her joints hurt and click, she has night sweats, she gets hot and cold, major fatigue, mood swings. She's getting some hyperpigmenation along her bikini line and armpits.

Labs are pretty normal, thyroid is great, negative ana. Out of desperation I took her to a functional medicine doctor who found her cortisol to be low as well as progesterone. They put her on progesterone cream (on her wrists) about a week ago. I took this info to her pcp who did a cortisol test (the tests that the functional med Dr used are apparently not standard). That showed to be low, but not low enough to be definitive, so we saw an endocrinologist yesterday. He was pretty awful but is going to do an atch stimulation test in April. She has another endo/colonoscopy scheduled for May.
Her periods are pretty normal.

She is missing so much school because of her pain. She can't do sports or any fun activities that she wants because she is too weak. She used to be a pretty athletic kid.

I would love any advice any of you may have. TYIA!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 11 10:52am

Hello @sarahmaec and welcome to Mayo Connect. As a mother, I can imagine how difficult it must be to see your daughter restricted from physical activity because of these health issues. We have other members who have had the ATCH Stimulation test.

Here is some information from the National Adrenal Diseases Foundation about this test,
https://www.nadf.us/uploads/1/3/0/1/130191972/clearing_cortisol_before_acth_testing.pdf
Here are links to posts from members of Connect who have had this test,
https://connect.mayoclinic.org/search/?search=ACTH+stimulation+test
You said in your post that, "She used to be a pretty athletic kid." When did her energy level begin to decline?

sarahmaec | @sarahmaec | Mar 11 11:22am

Thank you so much for this information.

I would say that her energy began to decline about a year ago to 18 months ago. She wanted to try out for cheerleading, but didn't pass the physical due to dizziness with exertion. She was tested for POTS (via cardiologist who did heart scans but not a tilt table test). He said she did not have it, but her pcp put her on salt pills. She was also dx with vestibular disfunction at that time. She doesn't really have the dizziness anymore.

gustavo1975 | @gustavo1975 | Mar 11 2:52pm

Hello. I am very sorry to hear about what you and your daughter are going through. Some of the symptoms you describe seem to be similar to several my wife has had. Aside from all the studies and analyses that the doctors have requested, I advise that you urgently see an endocrinologist and request ACTH and cortisol tests and be persistent with this. There are specific tests for this, at certain times. The increase or decrease in cortisol causes certain symptoms described by you above. I wish you the best of luck. I also advise being proactive. I am not saying that you should not be, but sometimes doctors do not want to do everything that one asks of them, based on medical theory. Sometimes practice is different from theory.

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rknightly | @rknightly | Mar 15 4:40am

It sounds an awful lot like ehlers danlos may be a factor. Or some connective tissue issues, not to mention POTS or some type of dysautonomia

Is it known that your daughter has a pituitary tumour? Or are you wondering if that is the issue?
Did she have precocious puberty- and any testing or the X-ray of her hand bones?

Jobri94 | @jobri94 | Jul 15 6:55pm

Hi Sarah! I’m also the mom of a young girl who has been having health issues that I’m trying to get to the bottom of. While searching her symptoms and criteria that she has met, I came across your post. I was originally researching possible pituitary tumor related issues which is what brought the post up. Then I saw you mention fpies and couldn’t believe it! My daughter also had that and I wasn’t even searching for anything related to fpies.

While my daughter doesn’t have the issue with constipation, one of her issues is frequent diarrhea and more IBS related stuff. She has also gained a large amount of weight very quickly and is under puberty age. She is only 5. I am curious, does your daughter struggle with weight as well? I have always had a gut feeling that fpies has a role in it even though she has “grown out of it”. She is always insatiable too. I am trying to piece everything together.

TYIA!!