Where The Girl Has Been – Part 1

It’s been 7 years since my first race collapse, 3½ years since that crazy 9-day hospital stay, and a veritable eternity wondering what’s wrong with me.

By the time I left Philly, I had given up looking for answers. All the researching, doctors appointments, tests, the strange symptoms coupled with the fears that this was all in my head, and the loss of my running as I had known it…it wore me down in a big way. So I decided to stop pursuing it completely and just get on with life, which I did for a year.

Then July happened.

July 2015: General Checkup
I was happily avoiding all things medical since moving to Richmond, but I needed a mammogram referral (normal check-up), which necessitated seeing a doctor. I wondered before the appointment if I should tell this new primary care doc about my health mystery but when I started to tell her, it became clear how pointless it would be, so I sputtered out early with a “nevermind”.

Some good did come out of that appointment, however! She ordered some general bloodwork and it was revealed that I had a Vitamin D deficiency. That was unexpected and hopeful, in a way, because (always the runner) Vitamin D and VO2max are close companions, so I wondered if that was the reason my running was worsening as time wore on. And if I have one deficiency, maybe I have more – what if it all boiled down to something simple?

With that, my investigative energy returned. The first thing I did was order a couple more “runner-centric” blood tests on my own dime: B12 (low) and iron/ferritin (perfectly normal).

Then Things Got Weird
Back in health detective mode, I immediately started paying attention to anything odd my body was doing (beyond the usual weird stuff that I was now accustomed to). It’s kind of amazing how I managed not to notice these things up to this point, but I think it was a denial sort of deal.

First off, my feet.

Back in 2013, I wrote a post describing my first noticeable attack of Secondary Raynaud’s, complete with photo and hugely embarrassing lack of pedicure. While I had a few random episodes in the months following, I hadn’t thought about it since then.

Now that I was paying attention, however, I noticed that while sitting at my desk, throughout the day, my feet would feel strange (tingly and cold). I’d mindlessly move my toes around to make the feeling go away.  But since I was on the hunt again, one day in July, I finally took off my little sockies to see exactly what was going on. And it was this:

PurpleFoot

My hand is there for color comparison. This happens every single day, throughout the day, as long as I’m sitting in a chair.

I assume it’d been happening for quite a long time because my big toenails have horizontal ridges on them (called Beau’s lines) that are related to Raynauds, which is what this is, same as in 2013, but more and constant. Some days, the cold and color would travel halfway up my shin!

Next, my crazy fingers.

Again, I’ve no idea when it started, I just noticed it in July once I started paying attention. It’s all on the left hand (though very occasionally a teensy bit on the right).

You might remember I posted about the crazy itch attacks I’d get in a hot shower (which still happen, though not as ferociously). Turns out the finger tremor is also guaranteed to occur with a hot shower, though it also happens intermittently throughout the day and I’ve no idea what triggers it then.

Another, more interesting side note: While searching this blog to see when I’d first mentioned “itching” (because I was compiling an outline for the doctor I’ll be telling you about), I landed on an old post from 2009 a few months after my first race collapse. It mentions my left index finger twitching intermittently for 4 days straight, which I’d forgotten completely. Apparently, ’twas a harbinger of things to come!

What I Did Next
Because I’m done panicking when it comes to my health mystery, I didn’t freak about these symptoms. I was actually grateful for them, since photographic proof is so much more useful than “I used to run 8min/mi easy runs but now I run 11-12 minute miles”, though the latter being infinitely more gut-wrenching.

Even with photos and video, I still wasn’t anxious to go to a doctor about it, my confidence in the medical world having been trampled and kicked to the curb. But the foot problem seemed worth tending to since, if this was happening in the midst of July, what would happen with them in winter?!

So in DIY fashion, I initially attempted to fix it with supplements, hoping the magnesium I’d been taking to accompany my Vitamin D would build up and help, then adding ginkgo, both known for circulatory effects. But weeks later, neither made a dent.

Next, I went back to Dr. Google, researching Secondary Raynaud’s in earnest – which led me to one cause of it that I’d previously glossed over: thyroid issues. My TSH tests had always been in normal lab range – albeit on the high side.

What I didn’t know until I started reading about thyroid, is that lab ranges for TSH can be virtually useless. That if symptomatic, you need a few other tests (most importantly free T3 and free T4) to determine whether your thyroid is actually working correctly. But the catch is that if your TSH is within lab range, most doctors won’t consider investigating further despite the wealth of symptoms you might have.

I don’t want to spend many words on it, but in a tiny nutshell: your thyroid controls your metabolism, how much oxygen gets sent to your cells and how much energy you get to have, among other things.

I went back over my TSH results through the years (I had 6, starting from 2009), and noted that each one increased over the previous. None of them were in “optimal” range, and my last one was at the very top of range.

Birthday Present To Myself
On September 6th, I turned 54. The Friday before my birthday, I bought myself a full thyroid panel. That means blood tests for TSH, Free T3, Free T4, TPOAb, TgAb along with 5 other thyroid tests. The whole thing cost me $208 – infinitely cheaper than a week-long hospital stay, or an unnecessary liver procedure, or a few lost years wondering what in hell is wrong with me.

Bitter much? Yeah, I get to be pissed off. I wasted a lot of time and tears.

Because a few days later, my results came back. My TSH was 5.39 (officially High), my Free T3 and Free T4 were both on the low end (gee, no wonder I can’t run), and most telling: high TPO antibodies.

High TPO antibodies are the marker of Hashimoto’s Thyroiditis: an autoimmune thyroid disease. Coupled with my high TSH, FT3 and FT4 results, there was no interpretation about it. It was.

That’s it for this installment, stay tuned for an even weirder symptom in Part II. Because the fun just gets funner. sigh

13 thoughts on “Where The Girl Has Been – Part 1

  1. thyroid geek

    you are sub-clinically hypothyroid ; this is a “2nd stage” of Hashimoto’s disease.
    Be sure to maintain B12 vit. level and eat selenium -rich food; according to some anecdotal evidence and few clinical trials , selenium helps to reduce TPO AB levels.
    Just curious if you have some nodules formed in your thyroid?

    1. Flo Post author

      Thanks Thyroid Geek! I have been taking selenium since I got the test results and am on 5000mcg/day of MethylB12, so all is steady in that area now. As far as nodules, when I took my info to the doctor I’ll be discussing in the next post, I brought the results of a cervical spine scan I had last year that mentions a small thyroid nodule, but the doctor dismissed it as inconsequential. I’m not sure I believe it though (as Part 2 will reveal, he’s no longer my doctor)

  2. Ewen

    G’day Girl. Wondered what you’d been up to. That hand video is freaky! Looks like you’re on the right path to finally getting fixed and back in motion (hopefully faster than 10 minute miles). BTW, I’ve been prescribed thyroxine for many years to control hypothyroidism but never had the hand tingling, cold sensitivity as bad as you do. Hope your case is as simple a fix as mine was.

    1. Flo Post author

      It’s Ewen! Hi honey. So you’re a hypo guy yourself! Small world, getting bigger by the day though. I’m glad to be in your club (if I have to be in such a stupid club). :)

  3. Angie

    Im sure you know this but you need to see an immunologist with a speciality in auto immune disease (at the very least, an endocrinologist). High thyroid antibodies can be a chicken and egg thing… Does thyroid disease cause the high antibodies, or do high antibodies cause thyroid disease such as Hashimotos ? Ive seen this first hand as my mom has a severe and rare systemic autoimmune disorder which presented in some horribly neurological ways (and I am thinking of your legs and hands tingling… which could simply be symptomatic of your low B12… or not). In any case her thyroid antibodies were found to be high but she does not have hashimotos. Anyhow, I know how frustrating getting auto immunes diagnosed are. You need to see the right doctor who is willing to chase down lots of angles and problem solve. It’s worth looking to see what specialists might be associated with med schools in the area as many of these auto immunes are not well known broadly. Good luck! I hope it is as simple as hashimoto for you, but I wouldnt just assume that is the case. Look and see if they did a thyroid panel when you were in the hospital 3.5 years ago for a point of comparison.

    1. Flo Post author

      Hi Angie, thanks for the good words. My Hashimotos was confirmed by a doctor. No, they didn’t take a thyroid panel in the hospital, the one I bought for myself is the only one I’ve ever had. Best wishes for your mom!

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