There are 2 main types of thyroid medication. The most commonly prescribed is synthetic T4. The other is natural dessicated thyroid hormone (NDT). It’s derived from pig thyroid and provides both T3 and T4. That’s the one I wanted.
Not a lot of doctors prescribe NDT but I found one in Richmond, a D.O. which, in the thyroid world, is generally recommended along with functional doctors over endocrinologists, since endos are known to treat by numbers rather than symptoms.
I made an appointment, thrilled that at long last, my nightmare was coming to an end.
After recounting my long tale, I hand over a timeline of previous TSH results along with the thyroid lab report. I mention a thyroid nodule found on a cervical scan last year but he dismisses it. He does, however, confirm I have Hashimoto’s.
He goes on to tell me that because some of my symptoms don’t fit, I’ve probably got an additional autoimmune disease (when you have one, you’re susceptible to more). I am surprisingly unfazed by that, my relief at finding someone who seems ready to get to the bottom of it all eclipses everything.
I’m a little taken aback though when, upon my mentioning something I’d read in my online thyroid travels, he rolls his eyes before making a disparaging comment about those “sites” (he actually said it like there were quotation marks around it).
Now, dear readers, due to an enormous amount of crappy or non-existent treatment, the online thyroid world is a sizable presence. Between discussion boards and advocacy sites, there’s information, experiences and data out the wazoo. I’ve been lurking on several sites for 4 months straight, and from the lab interpretations and discussions I’ve seen, I have a huge amount of trust and respect for the people who devote their time to analyzing and advising others in such a consistent fashion. And it is consistent from site to site, which lends more credibility to that information.
So when he tells me the dosage of NDT he’ll be prescribing is 1/4 grain, and that I’ll stay on that dose for 5 weeks before reevaluating, I recognize instantly that this is bad news.
Thyroid dosing is a slow process, taking months to find the correct dose, but common wisdom from all those “sites” (I sneered as I wrote that, because it’s fun to do) is that starting on too low a dose or staying on a starter dose longer than 2 weeks is likely to make you feel worse than not taking anything at all. What he was prescribing was both too low and too long. But he was adamant, “This is the way I dose NDT”.
I left with mixed feelings, unhappy about the dosage but reasoning that at least he was going to find out what else was wrong with me. For that alone, I could handle feeling like shit for a few weeks.
12 days later
I call the doctor’s office, beseeching him to please raise my dose to 1/2 grain. This, because I’m shivering cold to the bone, depressed as hell, my purple feet are now turning white, my fingers are twitchier than ever and I’m experiencing air hunger. Misery.
No reply for a couple days. Then I get a phone call from his receptionist – she has called to recite the doctor’s notes concerning labs I took the previous week – tons of tests actually: food allergies, sex hormones, complements, celiac, lyme, thyroid, ANA and more. Some stuff was fine, some was out of range, and for those items, the doctor’s notes were “I don’t deal with that” or “it’s inconclusive”.
Then the receptionist tells me the doc has agreed to raise me to 1/2 grain, but it’s accompanied with an admonishment, “Remind Ms. Karp that this is a long, slow process and blah blah blah”. And even more punishing, due to the dose increase, he makes me reschedule my next appointment 2 weeks later than originally planned. That meant I would remain on a shitty little dose for 7 weeks straight.
Over the next few weeks, I felt way better than on 1/4 grain but still crappy. I had to gave up run/walking completely, sticking to brisk walks for exercise instead. But I also made a wild discovery, one I was SURE would help the doctor figure out my troubles.
Another Crazy Symptom
When taking thyroid medication, there are a couple ways to monitor the effects: heart rate and temperature. I had started taking my temperature throughout the day – my usual waking temp is around 96.9 and during the day is 96’s-low 97s. That’s not unusual, hypo people are cold. But in my special snowflake case, it gets a little more interesting.
One day, when I was still run/walking, I get back into the apartment and think, “hmmm, I’m hot and sweaty, my temperature’s gotta be around 98.6, let’s see!” I stick the thermometer in my mouth, which takes an unusually long time for its “done” beep. And the result is: 92.5.
Thinking the thermometer must be broken, I take my non-digital thermometer and stick it in my mouth for 4 minutes. The faux mercury doesn’t even approach the first number (the thermometer’s lines start at 95). Shit’s real.
From that point on, I take my temperature after any activity, whether it’s a walk to the grocery store, housework, anything…without fail, it’ll be weirdly low and then, over the next 15 minutes it’ll inch up till it’s normal again. This happens every. single. time.
Of course I searched the web for explanations, but all I found was a random forum thread indicating adrenals. But as my doctor said in the first appointment concerning adrenals, “I don’t believe in adrenal fatigue, either it’s working or it’s not”. I didn’t have a big opinion on his viewpoint, adrenals are considered important on those “sites”, but I figured that if not adrenals, he’d have an explanation for why this was happening. I was confident he’d find this new clue super helpful.
I carefully graphed out these low activity temps and anxiously awaited the next appointment. I also rehearsed how I’d request more reasonable dosing. To that end, I printed off the prescribing information for my NDT (Naturethroid) and its competitor product, which both state initial dose is 1/2 grain and dosage should be increased every 2-3 weeks. (Note: on those “sites”, 1 grain is a common starting dose, but I was pushing the conservative route, the better to get him on board)
In my spiel I’d make it clear that he needn’t fear me going hyper from overmedication, that I would be monitoring heart rate and temperatures. Nothing would catch me by surprise!
The 2nd Appointment
Because I was convinced that my low exertion temps were a major clue in whatever else was ailing me, the first thing I did was present him with the cute graph I made. In my imagination, he jumps up and says, “By Jove, That’s It!”, explains what it means, gives me the cure and I live happily ever after.
What happened is he snorted and said, “That’s odd”. I ask what it indicates and he says, “No idea.” When I ask if any of his other patients have experienced anything like that he says (snorting again, because I’m obviously psycho to have taken my temperature a bunch of times and put them on a graph), “I don’t know, I don’t think anyone’s taken their temperature like that.”
Then I make the mistake of saying, “The only thing I could find about it online mentioned adrenals” and he replies, “I told you before I don’t deal with adrenals”. I ask what kind of doc would know how to deal with this, an endocrinologist? He gives me a doubtful look and says, shrugging, “You could try a naturopath or some other alternative doctor….”
Seriously? Mainstream medicine can’t be bothered with unusually low body temperatures? That’s “alternative”? But what I said is, “If I had a fever, a regular doctor would consider that worth treating, how is this different?”. Another shrug.
Then we go over my latest test results and of course, just as the “sites” foretold, all my thyroid numbers were worse. And a couple of the “inconclusive” results from the previous tests were still out of range. One of these, low Complement C3, didn’t have much online about its significance when paired with normal C4 & CH50 (I’m pretty sure I don’t have malaria), so I asked what it indicated thinking he could explain more than Google. He just said, ‘it’s an immune marker”, so I ask what that means, as in, “Ok, what will you do with this information?”. Crickets.
Then it came time for “May we please dose me per the manufacturer’s prescribing information?”, to which he replied, “You know how I dose NDT, if that doesn’t work for you, you should find another doctor”. Defeated, I asked, “If you were prescribing me synthetic instead, would you dose so conservatively?” His answer, “I dunno…depends.” Asshole.
He wasn’t going to figure out anything. And at his rate, it would be Spring before I’d land on a stable dose of medicine. I left in tears, having wasted 2 months when I could have been getting better.
On My Own
I had a plan in place before that last appointment, now I would implement it.
Forget wasting valuable time shopping for a new doctor, begging for dose increases, or being made to feel as though I have an unnatural thermometer obsession. I did what so many others do: I ordered NDT from Thailand.
Here’s the skinny on my current status: It’s a few weeks now that I’ve been self-medicating* and it’s going well! I’m tracking my temps and heart rate daily and will get blood tests in 6-week intervals to stay on top of it, just as I would with a doctor. But I don’t need no stinkin’ doctor.
Then in February, after dosing has stabilized, I’ll bring all my test results to the new primary care doc I just chose (seems like a great guy, tons of positive reviews). At that point, the next step will be clearer, thanks to symptoms abating (or not), and I’ll be happy to be referred to a specialist.
But that doesn’t necessarily mean I’ll hand over the self-treating reigns. As mentioned in the last post, my healthcare confidence is at an all-time low, so if things continue to improve as expected and I feel settled and satisfied, then I’ll stick to my DIY regimen, regardless of endos in the midst.
I’m no longer pining to be cared for by a white coat, just pining to get this health albatross off my back. And to that end, I will not waste another moment.
*On self-medication: I don’t advise anyone to follow my footsteps unless you know what you’re doing and have thoroughly educated yourself. I’m also not the one to ask how-to or where to get it, there are resources online that are easy enough to find. I’m just telling my story.