Skip to main content

Oops I did it again

Oops!

I advocated for myself again.

After getting the results from my latest CBC (Complete Blood Count), my doctor put me on daily Vitamin D-3 to increase levels but did not recommend iron supplementation for (what I consider) borderline anemia.

I was glad to hear low Vitamin D might be adding to increased fatigue but I still wondered... I have a history of low Ferritin levels, despite sufficient RBC/hemoglobin counts.

So... I made an appointment with an independent lab and had them check my iron levels.

Results? My Ferritin level is at 51, well within the 'normal' range of 100-232. Still, I wondered... So I did further research.

My low Ferritin level was originally discovered when I was diagnosed with Restless Leg Syndrome (but I may actually have Periodic Limb Movement Disorder). So I looked up literature regarding recommended Ferritin levels given RLS/PLMD.

Huh. Treatment recommendations are that Ferritin be no lower than 75 for people with RLS/PLMD.

Bingo!

So now I get to go to my doctor today and admit that I did an end run. Granted I had asked for the Ferritin test up front but was denied. And I haven't attempted to self-medicate since I got my results back two weeks ago.

Could I have just waited until today's appointment to make the case for testing? Yes. But having the test results in my back pocket gives me more information to work with - and perhaps a bit more confidence in my request.

My plan is to bring up the borderline anemia results to discuss. And then I'll own up to what I did. And we'll go from there.

Always remember that you are your own best advocate. You live with your body and your symptoms 24x7. Be aware of your symptoms. Be aware of your history. Information is power.

Comments

Most Read

Artificial kidney

I have a somewhat fanciful thought of what an artificial kidney would look like. I see a device that is shaped like a kidney (of course) but is completely clear so you could see all the blood circulating through it. Granted, once it's implanted no one's going to see it but - hey - it's my vision. The closest picture I can find of what's in my mind's eye is this image. Granted, that's a picture of a kidney-shaped paper weight and it's a little cloudy, but I know you can picture it too. My, oh my. My imagination is not even close to reality. According to a post from the American Journal of Kidney Diseases , there are three new approaches being explored right now: the automated wearable artificial kidney ('AWAK'), the wearable artificial kidney ('WAK') and the implantable artificial kidney ('IAK'). My money's on the IAK and you'll understand why once I show you the concept pictures of the other two. The AWAK is said to ...

Six Months of Jynarque!

Wow. Talk about falling off the wagon. The blog wagon that is. It's been almost four months since I last posted. That's what happens when you take a vacation, lose your focus and start thinking about things other than my kidneys. Which is not necessarily a bad thing. But I'm still here. I'm still taking Jynarque... six months later. And I'm still hydrating to the tune of one to one and a half gallons a day. Yes, it's down from my two gallon habit but it's so much more manageable. I'd always thought that the goal of Jynarque was to ramp up the dosage as quickly as possible and to stay at that level as long as you could manage. But after talking with my doctor - and checking with my peeps on the Facebook group - I found that urine concentration (or lack of concentration) was a marker used in determining dosage. So my doctor and I decided to stay at the 60 mg/30 mg dosage based on my urine osmolality (which is just another way to say pee dilutio...

Fresh, ICE COLD water

When I first heard about Tolvaptan, I truly wondered if I'd be able to choke down the amount of water needed to keep my kidneys hydrated and happy. I like water, but TWO GALLONS?!? Yikes. About nine months before starting on the meds, I purchased the Primo Water Cooler Dispenser + Pet Station . I live in a rural area and have well water so wanted to make sure that I wasn't ingesting minerals that could harm my kidneys. Also, I have softened water and wasn't sure if it was increasing my sodium levels - better safe, right? Plus - given that I have three dogs - I loved the idea of tying it together with a water dish for the pups. READ THE DESCRIPTION BEFORE YOU BUY! So somehow I thought it was a self-filling water dish. It is... but only if you self-fill it by pushing the button to fill it. DOH! Oh well. Over the summer, I enjoyed the crisp, clear water but I didn't truly appreciate it. Enter Tolvaptan. Now I CRAVE water. The colder the better. The icier th...

One week down

Just took the last dose for the week and I have to say that it went pretty well. The biggest change has simply been planning ahead and being aware. Bringing water with me when I'm out and about. Scouting for bathrooms before I need them. Keeping a full water bottle beside me when I work. Using the bathroom before meetings, before leaving home, before leaving work. Prepping water bottles to have bedside before i go to bed. Manageable. Totally manageable.

One more for the books

I had the quarterly appointment with my nephrologist the other day - one of the "bonuses" of being on Jynarque is that they monitor, monitor, monitor the heck out of you. And I'm happy to say that all my levels are stable - eGFR (we've decided to call me early Stage 4 since I've been teetering between 3b and 4 for the past 5-7 months), liver enzymes, calcium, phosphates, glucose, potassium, sodium, Vitamin D... Oops! Then there's that nasty Intact Parathyroid test. TOTALLY different story... Not only is it higher than last year - and increase of 75% - but now I'm outside the normal range. Sound the alarms! But wait. What exactly is the parathyroid? What does it do? And is this normal for a Stage 4 PKD patient? The parathyroid glands (four of them) are about the size of a grain of rice - or a pea, depends on your source - and they are located on your thyroid. They release a hormone (PTH) that regulates the amount of calcium in your blood ...