Tag Archives: Raynaud’s

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

Saturday’s Gift & A Second Wind

I felt so defeated when I wrote Tuesday’s post that I honestly did not expect to write again for weeks but I’ve now got a lot to say.

First off, I’d like to talk about the neurologist I saw. While he was very generous with his time, I don’t trust anything he told me concerning MS. Granted, he’s not an MS specialist, he’s a Parkinson’s/movement disorder guy so he shouldn’t be expected to know everything about everything, but he said some things I knew to be patently false, that contradicted common knowledge found on the National MS Society site (or any MS website) and refuted so many of the real patient stories I’d read. No sir, my crazy itching is not coming from sensitive skin, the heat connection is very real and certainly not “rare” by any stretch of the imagination (this was so blatantly bogus it was kinda shocking), the fact that I’m able to take 4 mile walks should not in any way diminish what I’m dealing with (“You walk 4 miles? That’s a lot! Most people don’t do that”), and “Can’t you change your route?” is not an acceptable answer to my telling you I can no longer even run across a busy street.

Then there are the MRIs.  The doctor didn’t go over the reports with me, I had to ask for copies as I was leaving the office.  While the brain MRI says there are no lesions to suggest MS, there are hyperintensities and my cortical sulci are “slightly more prominent for stated age of 52”.  Hyperintensities can appear with age but in 2012 I had none, nor was my cortical sulci noted, so something has changed from then to now and I would have wanted to at least talk about it.  I considered calling the doctor to discuss it but realized he’d just leave me infuriated. Dr. Google tells me the cortical sulci prominence means my brain is slightly more atrophied than should be for my age – the sulci is where our memories are so that sucks, but I’ll patiently wait for the next neuro to get a real explanation.  Because there is definitely going to be another neuro.

Huge thanks goes to my dear friend Simon who insisted that this doctor telling me “there’s nothing more I can do” when he hasn’t done anything aside from ordering 2 MRIs, is not supplying a satisfactory outcome and that I need a second opinion.  I almost resisted Simon’s advice, preferring to believe “doctor knows best” but the situation rankled and the more I thought about it the more I was sure Simon was right.

So my next neuro appt is with a bona-fide MS specialist, because if I’m going to be told yay or nay it will be from someone who knows their shit. My appointment’s not till mid-April but hopefully I’ll get an earlier cancellation.

I Saw A Hepatologist Today
Speaking of cancellations, I got in to see a hepatologist (liver guy) today to check out the MRI blob and by wonderful coincidence, it was the same doctor from the hospital 2 years ago who fought valiantly (though for naught) against the neurologists’ diagnosis of blood stealing.  Having him on the case is fantastic not only because I trust the guy but because every time I have to tell my story it’s like having to recite War & Peace, so convoluted, complicated and long as it’s become.  To my joy, he remembered the situation very well, saving me a lot of explanation, though he was certainly interested in where it’s taken me.

My liver is surely A-ok, it felt normal to him as he was thumping me and since I’ve not had any liver-related symptoms, the CT scan he ordered and the liver blood tests are just to be on the safe side.

And Then There Was Saturday: New Symptom Complete With Evidence
My life has become rather twisted.  Instead of dreading new symptoms, I now embrace them in the hopes that they might bring me one step closer to a diagnosis.  The best kind of symptom supplies photographic evidence and on Saturday afternoon I hit the jackpot.

As mentioned, for the last 3 months my exercise has been limited to long walks in the park – I haven’t cracked a real sweat since my last run in October. But on Saturday, after being stuck in the house for a couple days due to negative windchills and ice I thought it’d be fun to do a little exercise DVD from my pre-running days, something super easy and totally low-impact just to work up a sweat again.

So I pulled out “Walk Your Way Slim”.  I’m admitting this most embarrassing detail, not to impress upon you how low the mighty have fallen but to let you know how little it took for the following events to occur.

I start the workout and a couple minutes into the warmup, it comes to my attention that the toes on both my feet are completely numb. I look down (I’m doing this barefoot on a yoga mat) and note that my toes are so ghostly white, they’re almost green.  I stop a moment to feel them expecting them to be frigid but they’re warm so I figure this is just a passing oddity and will right itself once I’m warmed up.  But it doesn’t.

For the entire 45 minutes, they stay numb, white and damned uncomfortable but I’m entranced enough by the oddity of the situation that I press on to the finish, though stopping a couple times to take photos.  By the end of the workout, my toes are still white and numb but now they’re also cold to the touch. From warm to cold while exercising…must have been Opposite Day.

Afterwards, I sit down and watch my toes turn purple before settling back to normal.  A quick Google search (and confirmation today by my hepatologist) leads me to Secondary Raynaud’s Phenomenon – “secondary” because it’s stemming from whatever has been ailing me and of the listed possible causes I’m picking this one “Diseases and conditions that directly damage the arteries or damage the nerves that control the arteries in the hands and feet”.

I sincerely apologize for showing these disgusting gnarly old-polish-growing-out troll feet but I had no idea this was going to happen or I’d have made them cute beforehand. I’ve since given myself a pedicure with plans to do the workout again so I’d have cuter photos but screw it, I’m not going through that shit again. Anyway, note how the whiteness even spreads into the ball of the foot.

But wait, there’s more.

During the workout I started itching. That in itself is no surprise since raised body heat is a guaranteed trigger for it, but upon finishing the video and for the next 6 hours solid, I experience the worst non-stop “Fuck, when is this going to end?!” misery itching. Around 7:30pm it settles down in magnitude and number of locations but remains at a high level until I go to sleep around 2am. Even the next day, I was still itchier than usual.

The moral of this story is that “Walk Your Way Slim” packs one venomous punch. But really, that I’m messed up. It was like I OD’d on sweat and had a hangover the day after.  And while I totally see the humor of this, it’s a real pain in the ass that exerting myself in this most minor way results in such a dramatically uncomfortable outcome.  Putting aside what this might mean as time goes on, for the moment I’m very happy that it happened.  More grist for the mill, as they say.