Days 952, 953 and 954

Wow it’s Saturday morning already and I’ve never gone this long without blogging. Sorry about that (and yes I’m apologizing to myself too): life finally added the One Thing Too Many: Health stuff.

Still sober, of course. But moody and tired.

Back in November of ‘16 I had that spontaneous fibula fracture and got worked up for parathyroid adenma — benign tumor which messes up bone density, calcium and Vitamin D levels. That workup was frustrating because parathyroid hormone and calcium were at very upper end of normal, Vit D was way low and bone density scan showed osteopenia which I shouldn’t have at exactly 50 but which isn’t entirely out of the question either and the parathyroid scan - where you get injected with an isotope which should make an adenoma “hot” (really brightly visible) was negative.

In my gut I knew I had a parathyroid adenoma but the only cure for that is surgery and I didn’t want neck surgery at all if I could help it. I -definitely- didn’t want it done by my local surgeons not because the two who do it are bad but because it’s a tricky, finicky surgery with all kinds of possible bad outcomes and out here in The Hinterlands we just don’t _do_ enough of them to stay truly good at it. So I was okay with the endocrinologist telling me she wasn’t sure if there was an adenoma or not and said I would be fine with watchful waiting. Then when the main local parathyroid surgeon called to tell me she thought there was a “cold” adenoma I said I didn’t want surgery, which was true.

Actually I -did- want surgery: at the Norman Parathyroid Center in Tampa, FL which is the acknowledged world expert as that is the only thing they do and they’ve been doing it a long time. But I also knew they were “out of network”  so our insurance would pay either “Tier 2” or “Tier 3” rates and Tier 3 is basically the same as no insurance at all...and their total package for “foreign patients and all others paying cash” was low five figures. So watchful waiting it was. Stall, basically.

Flash forward to now. Time to repeat bone scan and labs.  First lab test back is Vitamin D which is ridiculously low — less than half the low end of normal. I think “well crap” because I’m pretty sure that means the adenoma I might not even have is getting bigger or more active or both. You see lowering blood levels of Vitamin D is how the body protects itself from the high blood calcium levels caused by the parathyroid adenoma leaching the calcium out of bones. My endocrinologist would have probably jumped right in that interpretation too but she left early last year and although I have a transfer-Care visit scheduled with her replacement it isn’t till early March.

So that really low Vit D value went to my well-meaning but ditzy primary care doc who immediately prescribed a super high dose Vit D supplement. She did not realize I have been consuming at least one dairy product every day -and- taking a multivitamin/mineral supplement daily even though the latter was  in my chart. So she didn’t make the deductive leap of “WHY is the Vit D so low?” Yeah, well, I’m no better because even though most of me thought “wait, isn’t mega-D -bad- in the setting of parathyroid adenoma? Didn’t I read that two years ago?” there was a part of me so desperate -not- to be stuck making the “cheap local vs expensive destination” surgery decision that I thought “maybe it IS just low levels and even if it isn’t I still have to show I’m a good compliant patient” so I filled the thing and took the first 50,000 (the kind you buy in the store is 1000) IU capsule on Monday.

On Tuesday the bone scan results came back. Not. Good. In two years I lost 10% of my bone mass and moved from osteopenia to full-on osteoporosis. Well, that was enough for me - critically low Vit D plus mega bone loss equals go online and start the intake process at the Norman Center so I did. I also had an email discussion with our benefits office and have determined th operation would be covered at Tier 2 rates which moves us down from low five figures into mid-four. Better. Not great but better.

On Wednesday two things happened: I got my calcium and parathyroid hormone levels back and both are at the high end of normal. In the setting of trashed bone mass and critically low Vit D this is pretty good evidence that I have an adenoma but my body has been -really- good at compensating for it. Go me. However last time, when the bones and the D weren’t as bad, those high but still technically normal values were used as evidence that I did -not- have an adenoma...so I’m curious to see whether or not any of my providers get back to me further about the results and if so how they will interpret them. I’ve already decided to have the experts handle it so it doesn’t much matter either way. Anyhow the -other- thing that happened was that the mega-slug of Vit D started kicking in and by “kicking in” I mean “doing its job of increasing blood calcium levels.” More Vit D means more calcium...and high calcium makes you thirsty, nauseated, weak and crazy. I know I shouldn’t use the word “crazy” but “affects mood, affect andcognition” takes SO long to type.

Things are better now but from Wed PM to last night I really hated living inside my own head. I could TELL it wasn’t working right but couldn’t DO anything about it. Very frustrating and more than a little scary.

So that’s where we are with things.