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37F: An endocrinology mystery: Tests do not indicate PCOS, Cushing's, Grave's, Hashimoto's, or Addison's. Past scans have indicated no adrenal tumor. Ultrasounds and CT cans are also no help.
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dee62383 is age 37 in Connecticut
Post Body

---------------- Required Information: ----------------

  • Age: 37 (37F is the required format)
  • Approximate height & weight: 5'3 140
  • Gender: Female (37F is the required format)
  • Medications you take: Spironolactone 50 mg twice a day; Metformin 500 mg twice a day (only to boost Spironolactone); Famotidine 20 mg twice a day (for h. pylori ulcers - no GERD); Tramadol 50 as needed for pain
  • Smoking status: Never smoked
  • Previous and current medical issues: hypermobile Ehlers Danlos syndrome (hEDS); IgG subclass immunodeficiency (PID); Psoriasis; vitiligo; possible hEDS complications including POTS and gastroparesis
  • Duration and location of complaint: 20 years; endocrine system

---------------- Introductory Summary: ----------------

I have a lengthy history of hormonal issues, and I Just got more blood test results back. Now, my thyroid stimulating immunoglobulins are low, too. I can't figure out what that means or what is happening to my body. Research is yielding nothing. Please help.

---------------- History: ----------------

- hypermobile Ehlers Danlos syndrome

- IgG subclass immunodeficiency (PID)

- Psoriasis and vitiligo

I have had a history of severe cystic acne for 12 years that did not improve until I took Accutane and then Spironolactone. I also experience hirsutism of the face and body and significant scalp hair loss. Facial hair is coarse and black, and often ingrown. I am on Spironolactone 100 mg/day and Metformin 1,000 mg/day. These have helped some after two months or so, but not enough.

I've seen two different endocrinologists on an ongoing basis, and neither can pinpoint the cause. Neither can definitively say it's PCOS, because I don't have irregular or overly painful menses, I don't have ovarian cysts, and I don't have the typical pot belly or blood sugar issues. Multiple blood tests at various points in my cycle also do not indicate PCOS.

---------------- Blood Tests - Endocrinologist #1: ----------------

- 17-Hydroxyprogesterone: 42 ng/dL, then 53 ng/dL a year later

- DHEA Sulfate: 281 ug/dL

- Prolactin: 8.51 ng/mL

- Testosterone Free: 1.01 ng/dL

- Testosterone Total: 39 ng/dL

- Testosterone Bio-Available: 9.4 ng/dL

- TSH: 0.71 uIU/mL

---------------- Blood Tests - Endocrinologist #2: ----------------

- Triglycerides: 140

- Cholesterol, Total: 191

- LDL-Cholesterol: 114 mg/dL (this measurement has always been slightly elevated, even as a child. I will continue to make an effort to reduce.)

- Non-HDL Cholesterol: 139 mg/dL (this measurement has always been slightly elevated, even as a child. I will continue to make an effort to reduce.)

- Vitamin D, 25-OH, Total, IA: 7L (my endo said nothing about this other than to take Vitamin D orally. But what does it mean??)

- Glucose: 92 mg/dL

- Urea Nitrogen (BUN): 11 mg/dL

- Creatinine: 0.91mg/dL

- eGFR Non-Afr. American : 81 mL/min

- Sodium: 137 mmol/L

- Potassium: 3.7

- Chloride: 103 mmol/L

- Carbon Dioxide: 25 mmol/L

- Calcium: 9.8 mg/dL

- Protein, Total: 6.9 g/dL

- Albumin: 4.5 g/dL

- Globulin: 2.4 g/dL

- Albumin/Globulin Ratio: 1.9

- Bilirubin, Total: 0.8 mg/dL

- Alkaline Phosphatase: 47 u/L

- AST: 14 u/L

- Testosterone, Total, MS: 31 ng/dL

- Testosterone, Free: 5.0 pg/mL

- Thyroid Peroxidase Antibodies: 1 IU/mL

- DHEA Sulfate: 156 mcg/dL

- T4, Free: 1.3 ng/dL

- TSH: 0.97 mIU/L

- T3, Free: 3.1 pg/mL

- Hemoglobin A1c: 4.7

- Thyroid stimulating Immunoglobulin: <89 [*LOW (normal?) *]

- ATCH: 13 pg/mL

- Platelet Count: 133 uL (Platelets are always slightly low. This may not be significant.)

Everything is completely normal except slightly high cholesterol, slightly high testosterone total, low vitamin D, low thyroid stimulating immunoglobulin, and slightly low platelets. I have also had multiple pelvic ultrasounds and CT scans, which indicate nothing. Nothing truly seems to fit my symptoms, even when you account for variation among patients. Both of my endocrinologists are stumped. I just wish someone could give me an underlying cause and tell me what it all means. Other than the illnesses I was born with, I am reasonably healthy. I'm just stumped!

---------------- Potentially eliminated diagnoses: ----------------

- I don't have the pot belly or buffalo hump associated with Cushing's disease.

- Elevated thyroid stimulating immunoglobulin indicates Grave's disease, correct? My TSI is low/normal.

- It's not Hashimoto's, because my TSH levels are normal.

- It's not Addison's, because my ACTH levels are normal.

- I have some PCOS symptoms, but none of the required hallmark symptoms. A1c, insulin, T3, T4, prolactin, all of that is perfectly fine every single time. I also do not have ovarian cysts or irregular or problematic periods.

None of my findings seem to fit any one syndrome, even when you account for variation among patients. Everyone is stumped, and I just want to figure out this mystery.

Thank you!

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