Where The Girl Has Been – Part 2

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.

The Appointment
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.

Er…what?

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.

15 thoughts on “Where The Girl Has Been – Part 2

  1. Ewen

    Wow! It’s terrible that you’ve had such a bad experience with this bloke and you’ve had to go down the DIY route. Hope your health continues to improve. What a hassle!

    1. Flo Post author

      Thanks, Ewen! Agreed, total hassle. I’m happy with how things are going now though, so good riddance to bad trash (as the kids say in the U.S….or did when I was 10 years old…they probably don’t say anything of the sort now…but I just said it…and used a lot of ellipses)

    1. Flo Post author

      Hah! Hey there, mister. :) I hope you’re having good times and much happiness. Here’s me sending a big ole hug up to Philly. xoxo

  2. Erin

    Hi Flo –

    You probably won’t remember me – I have been reading your blog since 2008 when I became a runner myself…incidentally, also the year I developed hypothyroidism as well. I’ve been through SO many of the same experiences with doctors and NDT – I was lucky to get on it very early on and it’s been a godsend…I’ve been on 3 grains since 2009, but since I don’t have Hashi’s, it’s a bit easier.

    I just wanted to say that without “those” websites, I’d probably be half-dead by now. They helped me find out about NDT, and much later on, they helped me find out about a life-changing med that I now take for my MS, which was diagnosed last year. Unless I’d been on “those” sites I would be sick, sick, sick. My current neurologist basically reacted the same way when I told him how I’m treating myself. He’s disgusted with me – and yet, I’m better than I’ve been in 10 years, haven’t had a relapse since my diagnosis, and finally ran a marathon in October, something I have been trying and failing to do since 2008. So.

    I feel like we have a lot in common – remember back when you diagnosed your own B12 deficiency? I diagnosed what I thought was my own B12 problem from reading your site and commented here at that time. Turns out not only was I deficient, but I did end up having MS, but it took a lot of bad stuff happening before any doctor would pay attention – bad leg spells and going blind in one eye. Fun stuff.

    In any case, I am so grateful you still write about all this stuff and I have my fingers crossed for you. Finally finding out what caused all my problems was very cathartic but I am still very angry that it took so long and that no doctor would listen – there’s a major problem in the medical world. I hope you can find someone who will listen to you and not treat you like this guy. I’m being treated now by an integrative/functional medicine doc and it’s changed my life, mostly because she listens to me, understands that I’m proactive and like to research, and doesn’t treat me like an idiot. Everyone deserves that.

    1. Flo Post author

      Erin, your post gave me chills. I do remember you from before! But god, I am so incredibly sorry to hear you have MS, that’s just heartbreak right there. Thank goodness you’ve found a drug that is helping, may it keep your disease manageable for many, many years to come. And I’m thrilled for you that you have a good doctor now, seeing as how they’re rare as unicorns. But your neurologist? He can go screw himself. ;)

      It’s so crazy to think you went through the same thing with “those sites”, not to mention the B12 stuff, it’s like we’re sisters or something. If you ever get to Richmond, I’m taking you out to dinner! But for now, I send tons of huge-ass hugs and kisses and peaceful thoughts for a wonderful and medically uneventful 2016.

      P.S. Thanks for giving me a reason to keep writing this stuff, sometimes it seems pointless and odd that I feel a need to keep this story alive until there’s a final button on it (if there ever will be), but your post gives it purpose. Thanks.

      1. Erin

        I don’t think it’s odd at all that you’re still writing and keeping your story alive. I wish I’d kept detailed journals about my experience! I can’t wait to hear what happens and what you find out.

        FWIW, the med I take for MS is actually referenced on one of “those” Thyroid sites, and is often cited as being extremely helpful for Hashimotos. I didn’t find out about it on a thyroid site but I see now that one of the advocacy pages has a whole page devoted to it. I had to see a private doctor, pay a ton of money, but I found the doc here who treats me and prescribes it, and it’s completely changed my life. I had debilitating fatigue before I was on it, and it’s completely restored my energy levels to levels I haven’t had in probably 10 years.

        Getting my D and b-12 levels in range has also made a huge difference in my running, so I think you will see some big differences getting those in range, especially D – it’s highly linked to autoimmune disease, and both the neurologists I’ve seen have actually prescribed it to me as a med and said it’s THAT important to take it.

        If there’s one thing I learned (and it’s the one redeeming thing your D.O. looked for) it’s that my thyroid diagnosis kept me from getting an MS diagnosis for a long time. When I went to see the docs with all my mysterious symptoms, they would see on my chart “thyroid” and immediately assume something must have gone off with my thyroid. They NEVER looked for anything else that might be causing my symptoms, and my thyroid tests always came back fine (except once after I had my son). It’s at least encouraging that your D.O. knew about co-morbid autoimmune diseases and didn’t just chalk everything up to the one possible cause. Less encouraging that he doesn’t deal with everything that popped up.

        Oh, and another thing we have in common are the abnormally low temps after exercise…and I have ridiculously low HR as well, but who knows if that’s thyroid or running or both…before I was well-managed in the thyroid area, I actually got hypothermia after a half-marathon and ended up in the ol’ medical tent with a temp of 90. It got better when I got my levels in range, but I always am cold after I work out for a few hours. So odd.

        Well, what a life. I can’t wait to hear how you improve on NDT after getting stabilized, and I have fingers crossed that you find an understanding doctor.

        1. Flo Post author

          Fascinating on the drug! Of course I had to instantly go investigate…LDN, yes? I’m going to read about that more thoroughly today, I had no idea it was such a powerful weapon and that it could be used for MS. Incredibly exciting that it has made such a big change for you!! And to think you found it on “those” sites makes me want to go slap the smug right off that doc I was seeing.

          Wow on the low temps and your Half Marathon emergency! I continue to think my dropping activity temps are a major sign in what’s going on with me (mine’s a bit different from yours though, because my temps raise back up over the course of ~15 min. of stopping). I’ve since had a 24-hour cortisol test done and that came out fine, which cancels out adrenals. What’s interesting, because I really have had a hard time finding accounts of this happening to others, is that since I wrote this post, I’ve discovered a subset of folks (via PubMed studies) known to have dropping temps upon activity! People with CFS. I don’t have CFS but it was oddly reassuring to see that it’s a known thing for at least one group of people, lol.

          I’m intrigued though, on why that happens to you, only because in my investigations, I thought MS people heated up faster/more during activity. If you run across any forum posts or info of people with lower exertion temps, please let me know.

          “What a life” is right. :) Never gets boring. Cheers!

  3. Emma

    Hi Flo, I came across your blog while searching for info on whether MSM works, but I have Hashimoto’s too so I read these posts with interest. I just wondered how you are doing now you’ve been on some medication for a few months, has your running improved?

    Best wishes
    Emma

    1. Flo Post author

      Hi Emma,
      Actually, it did NOT help! Other things have been, though. I’m in the midst of a real turnaround right now with lots to tell, but I need to get more data/time before posting anything definitive. It hasn’t been the thyroid stuff though, when I got my Free T3 & T4 up there, it made no difference whatsoever. It does make a diff for some though, so if your numbers aren’t great, it’s worth a shot. Thanks for asking and good luck to you!

  4. SFO

    Sorry to hear of your health issues,
    I glad you’re working on getting better any
    way you can.
    Do you still make music?
    I remember you were singing and playing
    Piano in the late 1980’s early 90’s in NYC?
    Take care of youself Flo.
    Best regards,
    SFO

    1. Flo Post author

      Thanks for the kind words! But SFO isn’t ringing a bell and I’m trying to think of who I know that might live in Japan (your IP), but my aged mind is a blank. :)

  5. Deborah

    It’s so sad in this day and age that doctors are still not willing to listen to their patient’s concerns and work with them instead of actually taking offence to being questioned about anything they say. I admire your courage to self medicate and I hope and pray that it all works out for you. You are an inspiration to us all, thank you for sharing this with us.

  6. Michaela

    Man what an eternal suckfest you are in. It shows how sick our healthcare system is. How can it take so long to determine what is going on with a fit middle aged woman?
    I so hope to read some good news here when I return!

    Ela from the past, RW forum buddy

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