Patient Stories

Diagnostic Worm Holes in The South

Posted In: Endocrine conditions Murmuration | February 19, 2015 | 00:46 PM

Living in Southwest Louisiana has been the greatest joy of my life our family lives on a 63 acre farm where a typical farm girl dreams could come true. Not so fast there is a huge gaping whole in this dream and it has to do with the regional healthcare problems. I have spent the better part of five years and dare I say eight different doctors trying to figure out what is wrong with me. I have been told everything from once we get your estrogen level straight you won't worry about why your stomach hurts or that lump in your neck all the way to the other humiliating end of the spectrum and I quote "You may just be one of those people who needs an antidepressant brain chemistry can really affect your perception of your body and it's symptoms." What? Where do these people get their training? How is any form of antidepressant going to help my adrenal glands produce cortisol? Will that antidepressant make the three different growths fall magically out of my body? Two days ago a nurse at my doctors office called to let me know all my tests came back normal! My response " Nurse, how is that possible? I have labs all over the place not to mention just about every fifteen minutes I break out in a full body sweat , heart palpitations, pallor, and nausea?" The nurse assured me everything is normal. I immediately called and collected all the results of these test's I was shocked to say the least. Here are some of the normal results.

MRI IAC/pituitary gland - normal finding 13mm maxillary sinus growth.

XRay of spine - Levoscoliosis and Osteophytosis

Ct Scan Adrenal washout - 0.9 x 1.3cm mass on left adrenal gland (recommend plasma metanephrine lab)

Normetanephrine, Free level (H) 1.12 nmol/L

Calcium Level - 10.4

Vitamin D level - 16

17-hydroxyprogesterone - 589

Igf-1 258

Cortisol - 16 with daily replacement of 40mg hydrocort.

Ct scan of Neck - Cervical lymphadenopathy

21 Hydroxylase Antibodies 0.6

MPV (L) 7.2 fl

Bun (L) 7.0 mg/dl

BNCR (L) 10

CL (L) 99.0 mmol/L

CO2 (H) 31.0 mmol/L

Chol (H) 235 mg/dl

Trig (H) 181 mg/sl

LDL (H) 143mg/dl

17 OHP stimulation test at 30 minutes 10,900 (HIGH)

FSH (85.0 uIU/ML)

LH (66.2 uIU/ML)

I was diagnosed in 1993 with CAH 21 OH deficiency late onset, no cortisol replacement until this year.

Did I mention that I can't hardly walk? No, maybe I forgot since I can't remember anything anymore.It's the excruciating back pain that's getting me I hate pain medication so I don't have any on hand and this feels like those kidney stones I had at age 16 now that I mention it even sort of like the pain I had with the 220 gallstones at 20.

At least my gynecologist gave me something for that pesky abdominal psoriasis.

This is all normal in case you didn't know, at least in South West Louisiana. So if you ever need results like mine confirmed come on down and get charged to be completely ignored.

Frequently I set back and wonder am I really having a problem? Maybe everything is fine, and I just make more out of my symptoms than others with the same thing. Maybe my 15 minute interval sweat fest with palpitations and pallor, headache is just my imagination. What can I do next? Do I seek out a surgeon to remove that growth on my adrenal gland? Is it a Pheochromocytoma because of the high normetanephrine level? Should I see someone about the cervical lymphadenopathy , they are growing larger as we speak. What's that thing that grew 10 mm in a year in my maxillary sinus? Would any of these things send me into adrenal crisis?

I stumbled upon a show last year or reruns of a show that made me wonder "Where is Gregory House when you need him?" I wouldn't even mind hearing him call a few of these folks Idiots.

I really feel like I found a nexus of diagnostic worm holes here. I hope I can find my way out.

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