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Pituitary tumor, but doc refuses to treat it

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Old 02-22-2012, 09:09 PM   #1
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Join Date: Oct 2011
Location: California
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paisleyowl HB User
Pituitary tumor, but doc refuses to treat it

Good evening,

I'm new to the forum. In 2004, my endocrinologist diagnosed me with a pituitary tumor after I'd been lactating. I was only 20 at the time, in college and was not nursing or pregnant. The MRI scan failed to show anything, but the doc decided to treat it anyway. I don't know if it ever went away, as I was getting off of my parent's health plan and on to my own, and I never followed up with it, as I was feeling better.

I'm lucky if I have one period a year, but somehow, by a miracle, I got pregnant with my daughter in 2010. Shortly after she was born, I started feeling miserable. An MRI scan revealed that I had a 5 mm pituitary tumor, which must be larger than what it was previously, or else it would not have shown up. Anyway, I started feeling like something was off. I lost all of my pregnancy weight plus an extra 15 pounds almost instantly.

I also started battling with joint pain, fatigue, depression, anxiety, mood swings, heart palpitations, headaches, a feeling of fullness in my head sometimes, insomnia, difficultly winding down at night, dry and inflamed eyes, blurry vision, frequent UTIs and respiratory infections, horizontal ridges/pitting in my fingernails, IBS, heartburn and constant fullness in my throat like I need to burp. I'm also having some hallucinations that come and go quickly; I'm attributing them to the tumor.

Anyway, the doctor refuses to treat the tumor, saying it must be inactive because all of my pituitary hormones are "normal." I have low estrogen, low progesterone and low DHEA, but I also have high testosterone (I was diagnosed with PCOS 10 years ago). My LH:FSH ratio is 2:1, where it should be 1:1. My TSH is 2.190, and while T4 was normal, T3 was borderline high. Ironically, my 24-hour urine test showed low cortisol, while the ACTH stimulation test showed high cortisol. I'm not sure what to believe. The only pituitary hormone the doctor has not checked is ACTH, which I find odd. But he says there's no reason to check it, and thus, no reason to treat my tumor.

You can imagine my frustration, as I have all of these symptoms and have had them for 18 months now, still with no answers. I've seen a rheumatologist, who says I just have fibromyalgia and carpal tunnel. I've seen a cardiologist, who says I have an enlarged right ventricle and tachycardia, but I'm otherwise normal and don't need to be treated. I've seen the opthamologist, who says I have inflammation and keratitis in my eyes. I've seen the gynecologist, who says I have PCOS. I've seen the endocrinologist, who refuses to treat me. I've seen all of these different doctors, and all of them look at each individual symptom and fail to see the whole picture. It's so frustrating, and I'm sure many of you can relate.

The only thing I know of is this pituitary tumor and my PCOS, neither of which the doctor will treat. Has anyone else had a similar issue?

I see a new endocrinologist next week to get a second opinion. Any advice on where I should go from here?

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Old 03-03-2012, 11:31 AM   #2
Join Date: Jan 2011
Location: Calgary, AB
Posts: 67
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Re: Pituitary tumor, but doc refuses to treat it

Whatever happened about your visit to the other endocrinologist? Hopefully he treated it.

Usually they will watch it grow for awhile first to make sure it is growing, but they let mine grow for so long that now it will cost thousands and thousands of dollars to treat the other offshooting diseases. Seems medicine still doesn't understand that this disease is one of the worst people can get because it results in so many other really serious diseases.

The bigger they let it grow, the harder it and more dangerous it will be to treat it afterward and the more likely it will return after treatment.

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