Fade in: The Benny Hill theme plays in the background while Alumiere, the patient, gets more and more confused and frustrated during a Doctor's visit.Cue Benny Hill-esque comedy of errors in the doctor's office, brief cuts between doctor in her office (talking loudly to be heard), staff (at reception area/in hall), and confused patient and her partner in waiting room.
Patient: Wait, what?!
Doctor: Not fasting, so take the test at 8 to 9am, but eat something first.
Patient: Um... you understand that that is not 24 hours after I take Thyroid medication right? I wake up and take those at about 11am, then wait two hours before taking anything else or eating any food.
Doctor: Right - get up, eat, and go to get the bloodwork done, but don't take Thyroid medication or pregnenalone before the bloodwork.
Patient: Now I'm more confused. I get up at 11am, take Thyroid. Wait two hours to eat lunch and take my "morning" medications which includes the pregnenalone.
Doctor: No, you should be taking the pregnanalone at the same time as the thyroid medication. Wake up, put the Armor under your tongue to dissolve, swallow the pregnenalone. Then wait two hours to eat and take other medication.
Patient: Ok, I'll start taking the pregnenalone with the Armor. But that doesn't answer the question about bloodwork... If i have it done at 8 to 9 am that's 21 to 22 hours after Armor and pregnenalone. My last doctor was adamant about testing thyroid 24 hours after my wake-up dose.
Doctor: Oh, that doesn't matter, 21 to 22 hours is fine. But make sure you schedule the tests mid-cycle for your menses. That impacts the other hormones we'll be testing for.
Patient looks at partner
: Did you understand that?
Partner: Yep, I think so. She takes her morning meds as usual, then mid-cycle she does this batch of testing at 8 to 9 am, waking up roughly 3.5 hours early to eat before the testing. And that's not going to throw levels off for the metabolism, hormone and adrenal levels?
Doctor: It shouldn't; if it does, we'll adjust testing time on the next round of tests. Directed to patient:
But ideally you should be up between 7 and 8 am every day.
Patient writing furiously on back of last test results
: Got it. And we've discussed this in both the last appointment and today - my body does not function at 7 or 8am; it has never functioned at those hours, my personal clock is currently set for 11pm to 1am bedtime and 10am to noon wakeup. I have never been able to hit 7 to 8am for an extended period of time even when work or school required it. I'd go to bed and get out of bed on time, and be dysfunctional, forgetful and uncoordinated until around noon no matter what. It is just how my body clock works, and I can't change it; getting to semi-functional at 10am to noon is rough - my brain/body totally wakes-up between noon and 2pm no matter what bedtime is.
Doctor: Oh, right. Well, still do this round at 8 to 9am. Once we get the cortisol and melatonin 24 hour tests done I'll be able to get a better picture of your sleep/wake cycle.
Patient Exasperated look, writes more, gathers paperwork and book, stands to leave
: Thanks.Cut to patient, partner on couch, both working on laptops. Patient is typing furiously between concentrating on written notes and asking unheard questions to her partner; all the audience can hear is loud stompy industrial music. This is what we see on her screen...
It was a follow up with my new Endocrinologist; the first thing she said upon looking at my blood work was "your thyroid levels are so low I'm surprised you're able to stand and walk." I guess that's part of my constant listlessness, lack of energy, and the fact that it's 85F in here and I'm wearing velvet tights, fleece socks, a long silk nightgown, and a fleece robe to not be freezing.
Apparently TSH 46.58 mIU/L (normal 0.4-4.5) with T3 free of 98 pg/dL (normal 230-420), T3 total <25 ng/dL (normal 76-181) and T4 free of 0.4 ng/dL (normal 0.8-1.8) is bad. And (duh) proves I have Hashimoto's thyroid disease. Now we start fucking with thyroid replacement types and levels again. And this is part of why I get so frustrated - I'm making plenty of Thyroid Stimulating Hormone (which basically is what Synthroid is - the standard treatment for thyroid issues); my body isn't then taking it and making T3 or T4 at proper levels.
Other weirdness in my blood tests (note: this is only one of the tests, the others are still in progress at the labs, and there are more tests to be done - I will be playing the role of walking pincushion for the next 3-6 months) Vitamin A high, Testosterone low, Cortisol free high (2.34 mcg/dL normal .07-.93 mcg/dl) & Cortisol total high (35.8 mcg/dL normal 4-22 mcg/dL) - she thinks my body may be overproducing this due to uber low thyroid levels - glad I didn't do the 24 hour saliva testing on that yet, monocytes (white blood cells) low (130; normal 200-950), I test positive for Epstein Barr Virus exposure in the past which may have an impact on the Hashimoto's and/or the CFS, Pregnenalone is low even though I already take this daily, and my IGF (growth hormone) levels are low.
So, we're going to start a new (to me) course of thyroid medication, Armor, ramping up from 30mg/day to 60mg/day over the next month; then retest. She thinks I'll end up on 120-150mg/day, but wants me to ramp up slowly. I need to double my pregnenalone dose starting tomorrow. Because the thyroid impacts the entire adrenal system, she's not going to adjust anything else until after my next round of tests (and they missed estrogen/progesterone tests in the set from Quest so no idea how off those are atm).
I need to go see a pain specialist about the Fibromyalgia and arthritis pain and the numbness. I also need to go see an Immunologist to have more testing done regarding the memory loss, and to further discuss Epstein Barr. I still need to have the Cortisol and Melatonin 24 hour saliva tests & the Thyroid Ultrasound done (July? - depends on finances and how I feel; it's pointless at the moment as my thyroid is so whacked).
I need to do some research on Valtrex and Epstein Barr to decide if this is something I want to try - it may help the auto-immune thyroid problems, it may not; same with the Chronic Fatigue Syndrome; but it can also have major negative side effects for people with compromised immune systems, cause kidney damage, and other issues. Also research on IGF and whether I want to consider supplementing that.
I feel like I've taken about two dozen steps back over the last year and a half health wise, and while I don't feel like there are any answers yet, I think at least we may be starting to ask some of the right questions. That said, her office is totally disorganized, and the doctor herself seems to talk in circles which makes her very difficult for me to follow. Also, yelling at your staff about your glittery black pen while in with a patient is ridiculous, and it's time to network your computer system and join the fucking 21st century.
What should have been a 20-30 minute visit took two hours. They didn't tell me I needed to fill out more assessment forms before coming in. They didn't tell me that when I checked in 15 minutes before my appointment time. They didn't tell me that when they took me into the exam room to take my vitals and review my chart prior to her seeing me. They also forgot to order some of the blood tests she wanted from Quest (no biggie, we'll get it next time).
Notes for next visit - talk about the ringing ears, the dizziness and intermittent fuzzy vision, the continued problems with scent and food. Ask about the worsening numbness; why I'm having more/longer lasting migraines; what is causing the itchiness and the jitters I get sometimes (especially when I'm trying to fall asleep and/or exhausted). Remind her again that the memory loss continues intermittently and the "fibro fog" seems more frequent than ever. You wrote them down before the first appointment, but they got glossed over thus far, and they suck.
Thankfully, between my notes, her giving me a copy of my test results, and T listening from the waiting room I think we got everything important regarding the tests. I hate being this stupid and needing all this help (also, if she had someone not T in the waiting room that would be bothersome). I hate not having simple answers and/or a clear path to feeling like myself. I dread repeat visits and testing as we try to re-balance my system with new medication. And I cannot really afford all these tests and office visits; for some reason she thinks I'm already on Medicare and it won't cost me anything; I have to keep reminding her of the fact that I'm on BC/BS PPO, and that these tests are expensive, co-pays are expensive, medication is expensive, etc.
I'm sick of feeling like my life is no longer my own; of sleeping so much; of forgetting simple things; of losing large swathes of time. I still hope things will return to normal, but I have begun to (gracelessly) accept the fact that normal isn't really possible, that I'm not going to "get better", that my new baseline is not going to be anywhere near what my old one was. I get it, even though it makes me want to smash things - a lot; some of the damage is irreparable. Just tell me what is and isn't permanently broken so I can find a way to work around it or make decisions about life going forward; I've hit another wall and I seem to be stuck.
I'll end with a thank you to everyone who helps keep me from totally losing my shit, my family and friends who've given me emotional and financial support when it is necessary, my friends who put up with my bad moods or my sleepwalking through stuff, and most of all to T for not letting my lack of enthusiasm or energy drive him up a wall. There's still a glimmer of hope but it's harder and harder for me to see it some days; I know it's still there and I haven't given up - I just can't always remember why.Patient hits post on her blog, switches tabs to mute music and resume BBC player. Neil Gaiman's voice quotes Jack Benny on BBC Radio which makes her smile a bit: "I do not deserve this award. But I do not deserve my arthritis and I have that too." Fade out begins.
Patient voice over: At some point I suppose I'll learn to laugh about my pain/health; today is not that day, but even a wry smile is an improvement. End