Miss Diagnosis: We Spoke with Dr. F.

Wednesday, December 16, 2009

We Spoke with Dr. F.

I'm feeling overwhelmed with all I need to accomplish before Christmas, but if I don't do this post now I'll never get around to it.

Sunday night we spoke with Dr. F regarding Alex's ongoing issues. He feels her lack of energy may be from either too little hydro or too little Florinef based on the labs. Renin was dead on center normal, and Alex and I have tweaked till we felt it was the perfect dose so I don't feel like it's the Florinef. I've continued to think we need to get her hydro dose lower still but the 24hr UFC/OHCS looks quite low, leading him to believe she needs more if anything.

He wants to see another Free T4 before he would consider thyroid replacements. Her numbers are still within range and once you start thyroid meds it's generally for life, so he wants to wait for now.

As far as the female hormones he would like us to consult a GYN. We set up an appointment next week and they will probably start her on bio-identicals.

Dr. F would really like for her to have the GH stim test, her numbers have been continually dropping though they are still within the reference range. The values are higher every year until 18, so hers should be going up not down. We will ask her local endo if he is willing and able to order it; we see him in January. The cost to have it done in L.A. is significant, since insurance won't cover testing done at ETLA.

Friday Alex has an appointment to see her pediatrician for a consultation regarding AD/HD, and the possibility of getting medicated for it.

One more thing? She's down another 3 pounds. That makes 17 since surgery.

2 comments:

judycolbyDecember 16, 2009 at 7:55 PM
Rene,
The adderall has helped Jess' energy level a lot, not just her concentration. Hope Alex can try it.
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jennyrDecember 18, 2009 at 3:40 AM
I wish the BLA would have been the end of all Alex's problems..it sounds like it's gonna take a lot of fine tuning to get everything just right. Hang in there..the right combination of meds might be just around the corner!! Hope you all have a very Merry Christmas.
Love,
Jenny.
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Transphenoidal Pituitary Surgery- From the UCSF web site

What happens during surgery?
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', meaning 'to cross or pass through', and 'sphenoid', the name of the cavity (the sphenoid sinus) that is passed through to reach the pituitary gland. Newer techniques and improvements in technology now allow removal of these tumors without the need for an incision under the lip or within the nostril. The surgeon begins the approach by entering through the nostril on one side. The surgeon uses a brilliant fiber optic light to illuminate the internal anatomy, a microscope to magnify the area of surgery to 12 times the actual size, and very tiny microsurgical instruments especially designed for this particular operation. The surgeon guides the surgical instrument into the nasal cavity and an opening is made in the sphenoid bone. The sphenoid sinus is entered, and then an opening is made in the wall of the sella turcica to expose the pituitary gland. The adenoma can be readily distinguished from the normal pituitary gland tissue and is removed without removing the normal gland. After the surgeon removes all the tumor tissue, the small cavity that is left is treated with alcohol to destroy any tumor cells that may remain. This cavity is then sealed, sometimes with a piece of fat that the surgeon removes from the patient's abdomen. The surgeon then applies a biological 'glue' that helps seal the pituitary area from the nose and promotes natural healing. No nasal packs are used with this approach.