The Tale of a Zebra (EDS) and POTS

View Original

Specialist - Finally!!!

EDSZebraPOTS

After waiting for over a year (I moved here in September 2017), I finally got to see a POTS specialist! She’s a cardiologist that has taken a special interest in Dysautonomia/POTS. It was really refreshing to hear her speak to her lack of experience and her willingness to refer me out to other people on her team if she doesn’t know the answer. She’s fairly new to POTS but has been working with another Doctor that has been doing this for a long time (but isn’t taking new patients anymore). The only thing I didn’t like about this visit was when she questioned my original POTS diagnosis after looking at my Tilt Table results. I was diagnosed by a specialty team that worked at Mayo Clinic. I trust their judgement of my results. 

Here’s what I got from the appointment:

  • Ordered bloodwork for normal cardiology related things 

    • Comprehensive metabolism

    • Magnesium

    • Hemoglobin A1C 

    • Lipid Panel 

    • Cortisol

  • Ordered bloodwork for Thyroid because other members of my family have thyroid conditions

    • TSH

    • T3

    • T4 Free

  • Ordered 30 Day Holter Monitor test because my dad has a pacemaker and we want to rule out his medical condition. And she said this should have been ordered after my original diagnosis

  • Referral to gastroenterologist for suspected SIBO (Small intestinal bacterial overgrowth). 

    • I’ve been treated for this before - when I was dealing with insurance denying my prior authorization for Xifaxin a few years ago but never labeled with this diagnosis. The doctor described it to me as a bacterial overgrowth but never outright said that I had the condition.

  • Also recommended I get a second opinion from a different Urologist. Cardiologist doesn’t want me to lessen my fluid intake and isn’t on board with the urologist’s course of treatment. I said I’d wait until after my appointment with the gastrologist to see if we can relieve my constipation and lessen my overactive bladder that way. Or at least see what they have to say first before I go messing around with other things.


About a week after my cardiologist appointment, I had a routine med check with my primary doctor and finally went to have bloodwork done that had been ordered (not just by the cardiologist but also from doctors prior). 8 vials of blood later… which is less than normal :D

Results started coming in:

  • Cortisol

    • 27.7 (no remarks on this one about what ‘normal’ range is or anything)

      • Waiting on response from doctor about the interpretation

  • Hemoglobin A1C

    • 5.0 (Standard range = less than 5.7)

    • Estimated mean glucose 97 (No remarks or standard range listed, waiting on response from doctor)

  • Magnesium

    • 2.1 (Standard range = 1.6 - 2.6)

  • THYROID

    • T3 Total

      • 110 (Standard range 60-181)

    • T4 Free

      • 1.12 (Standard range 0.76-1.46)

    • Thyroid Peroxidase AB

      • Less than 28.0 (Standard range less than 60.1) 

        • Waiting on response from doctor 

  • LIPID PANEL

    • Triglycerides

      • 56 (Normal = less than 150)

    • Cholesterol

      • 160 (Desirable = less than 200)

    • HDL Cholesterol 

      • 49 (Low = less than 40, High = more than 59)

    • LDL Calculation 

      • 100 (Standard range = less than 130)

  • COMPREHENSIVE METABOLISM

    • Sodium 

      • 139 (Standard range = 136-146)

    • Potassium

      • 3.5 (Standard range = 3.5-5.1)

    • Chloride

      • 104 (Standard range = 98-107)

    • C02 Total

      • 25 (Standard range = 22-32)

    • Glucose

      • 98 (Standard range = 70-125)

    • Urea Nitrogen

      • 8 (Standard range 7-21)

    • Creatinine 

      • 0.07 (Standard range = 0.5 - 1.0)

    • Osmolality Calculated

      • 286 (Standard range = 280-305)

    • Albumin

      • 4.1 (Standard range 3.3-5.0)

    • Total Protein

      • 7.7 (Standard range 6.3 -8.2)

    • Calcium

      • 8.9 (Standard range 8.4-10.3)

    • Alkaline Phosphatase

      • 39 (Standard range 38 - 126)

    • AST

      • 21 (Standard range 15-37)

    • Bilirubin Total

      • 0.8 (Standard range 0.1 - 1.2)

    • Anion Gap

      • 10 (Standard range 6-14)

    • ALT

      • 33 (Standard range 13-59)

    • GFR Calculation, Non-African American

      • Less than 60 (Standard range less than 60)

  • Gyno Bloodwork (that I forgot about from a long time ago!)

    • HIV, Syphilis, Hepatitis C, Hepatitis B - All Negative

    • HSV 2 - Genital Herpes - Negative

    • HSV 1 - aka Cold Sores, I have it. Actually have one right now that’s a huge pain in the lip and won’t go away! Luckily there’s medication for it and my doctor increased my dosage this time because it made me look like I had a fat lip. If you get cold sores regularly, talk to your doctor and see if a medication could help you too. I had no idea it existed until my younger brother told me about it. 

Lots of bloodwork done! Waiting to hear back from the cardiologist to see what she thinks of the results. From what I see, everything looks to be within a normal range. A few are on the lower end. Still waiting for the scheduling team to call me about the Holter Monitor. And I have an appointment with gastroenterology next week (that I need to move because of a trip I’m taking). So at this point, I’m kind of in the “let’s wait and see what’s next” stage. I’ll update when I have more information.