Tuesday, June 23, 2015

It doesn't get much better than this...

What a whirlwind two days up in Rochester, MN.  I arrived the night prior due to terrible weather predicted for the drive up on Monday - so glad I made that decision!
Got the blood work and neck ultrasound done right away...results trickled into my Mayo APP on my phone and everything looked good!
Tg (tumor marker) undetectable
TSH at 0.5 - just fine for me at the low end of normal
Free T3 at 1.6 - the top end of the scale is 1.7 so high normal
Cholesterol 180 (I celebrated with a cheeseburger)
Kidney function fine with creatinine at 1.0
Phosphorus good at 3.2
Vitamin D not as high as I'd like, but still good at 44
Hemoglobin A1c at 6.0 so just fine...although I'll work to get it back down to 5.8ish
Parathyroid Hormone elevated but stable with prior tests at 102
Calcium elevated but stable with prior tests at 10.3

So CANCER FREE and the doc wants to continue to do a neck ultrasound and tumor marker test once per year for 5 years from my last occurrence - so that would take me to 2017 or two more years. If things look OK, we go to every TWO YEARS - WOOHOO!!!!!

The neck ultrasound clearly found the diseased parathyroid.  But with stable parathyroid hormone and stable Calcium, there are only two things that would warrant surgery to remove it:
1. My age - I'm young enough that removal would mean not dealing with this for the rest of my life
2. My bone health - if bone loss is very significant, we would want to reverse it via surgery to remove the diseased parathyroid

The reasons that do not warrant surgery:
1. My neck - full of scar tissue from two prior surgeries and one ethanol ablation
2. My vocal cords - if damaged during surgery (higher risk due to number one) I could end up in pretty bad shape...where the vocal cords flop down and cover the wind pipe so they open a hole in your neck permanently (NO THANK YOU)
3. My bone loss is not bad enough yet and if it worsens, I could use medication to help that rather than surgery
4. My other parathyroids might not kick in and work, leaving me with hypoparathyroidism (opposite of what I have) and that is AWFUL.  Anyone with hypoparathyroidism would likely gladly switch to hyper...  One of my parathryoids on the left is diseased.  The other on the left was removed and inserted into the muscle wall of my neck in 1996 during my thyroidectomy.  The two on the right might be dormant due to the one on the left being diseased and overactive.

So, all in all the doctor cancelled the consult with the surgeon (who had added a vocal cord exam, which was also cancelled).  I was just fine with this!!  Instead he sent me for a bone density scan which showed osteopenia with a 5% risk of fracture in the next 10 years and a 0.7% chance of a hip fracture in the next 10 years...so not enough to warrant medication at this time (HOORAY).  He wants to repeat the bone density scan in two years.

His resident who saw me part of the time today said "keep doing what you are doing."

I have nothing to complain about - I am blessed with these results and with good doctors who are not anxious to cut people open.  I've found a supportive group on Facebook out of the UK who all face Hyperparathyroidism and I'm getting some good tips and ideas there on how to deal with the symptoms since I'll be living with them for a good long while, I hope!  I'd like to avoid surgery...since I've had 8 major ones already.  I do have to pay attention to Calcium levels since as it creeps upward (if it does - hope it does not) then surgery must happen due to symptoms such as kidney stones and other un-pleasantries.

God is good!