Idiopathic

Red I

Got platelets?

Idiopathic: an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.

From Greek ἴδιος, idios (one’s own) + πάθος, pathos (suffering), it means approximately “a disease of its own kind”.

“A high-flown term to conceal ignorance” – Isaac Asimov

“From the Latin, meaning: ‘We’re idiots ’cause we can’t figure out what’s causing it.'”- House, M.D.

Idiopathic Thrombocytopenic Purpura:

Idiopathic: cause not known

Thrombocytopenic: lower than normal number of platelets in the blood

Purpura: purple bruises caused by bleeding under the skin

In simpler terms, my body is fighting a war within. Mysteriously in 2005, it began attacking its own platelets and destroying them. ITP is a diagnosis of exclusion. When doctors rule out every other cause for low platelets, they chalk it up to ITP.

Platelets aid in clotting, so low platelets put you at risk for bleeding. In an adult, a normal count is about 150,000 to 450,000 platelets per microliter of blood. My “normal” seems to hover between 30,000 and 50,000. Under 20,000 is a concern. I’ve “crashed” and dipped under 10,000, which requires treatment (usually Prednisone), and at times, hospitalization.

I’m not going to harp on the disease itself. It is what it is.  Not contagious, not genetic. There is no cure, just therapies to increase platelet counts temporarily. There are some amazing support sites and informational sites out there for ITP, like the Platelet Disorder Support Association. If you or a loved one have been recently diagnosed, I highly recommend the aforementioned site. ITP is a fairly common auto-immune disease, and thankfully most people can live normal, healthy lives with it.

As I sit in my Hematologist’s office, watching people coming and going for various infusions and chemo, I thank my lucky stars. When the doctor is running behind schedule, I never complain. I want to be his least important patient. I’d like to keep it that way.

There is a certain stress, however, that comes with an idiopathic diagnosis. Knowledge is power. Not knowing what causes the problem in the first place leaves you feeling helpless. It is stressful when you realize your body is silently “betraying” you. Not being able to find a rhyme or reason as to why your platelets “crash” one month after being at record highs the month before is frustrating. Many ITP patients “know” when their platelets are low. Obviously if you can play Tic-Tac-Toe by making bruises on your skin, your platelets are pretty darn low. Other people swear they know by the feeling of fatigue, or what I call “brain fuzz”, even though these are not “symptoms”, according to the experts.

So what to do? Give up tackle football. No more tattoos. No gin and tonic (quinine’s a no-no) and stay clear of Ibuprofen and aspirin. Again…thank some lucky stars. It’s not debilitating, it’s not terminal.  After seven years of wrestling with it, I’ve begun to see some ebb and flow. Stress and the controlling of stress (via exercise, yoga, better diet with less refined sugar, more sleep) are the closest I’ve come to establishing a pattern.

There is no antonym for “idiopathic”. But I would be happy with “spontaneous unexplained remission”.

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14 thoughts on “Idiopathic

  1. That is a great word! I hope you feel better soon.

  2. Alysa Cohen says:

    xo Hate that you have to deal with this. Maybe it will just idiopathically reverse itself. We can hope. xo

    • jesstopper says:

      Aw, thanks. In the grand scheme of things though – I do feel lucky. As my doc always tells me, I have few platelets but they are young and strong and healthy. Woo! I guess my spleen just likes to kick ass and take names (or numbers)! xo

  3. Mer says:

    Why can’t you take ibuprofen or aspirin? Just curious. I had a bout of idiopathic diagnosis in 2005 (hospitalized for an auto-immune problem of what they called a drug-induced lupis, only because they really had no idea why my body was attacking itself). I was taken off all medications and remain unmedicated now for the most part. I am allergic to ibuprofen and that allergy began around this same time period. Amazing how different every body can be.

    • Jhowe says:

      I was diagnosed with ITP in 2002 and after 9 months of treatment with Prednisone (no fun) have been symptom free ever since. I avoid Ibuprofen but didn’t know about Tylenol. However I have developed tennis elbow which is proving to be a challenge to treat without Ibuprofen. Does anyone know if you have to avoid ibuprofen forever if you have had ITP (my platelets got as low as 8,000 at the time)? Otherwise I am possibly looking at surgery for the tennis elbow.

      • jesstopper says:

        Jhowe, I would check with your doctor to make sure – if you’ve been symptom-free for the last 10 years, perhaps you had an acute, rather than a chronic (on-going) case of ITP. Best of luck!

  4. jesstopper says:

    It’s said that aspirin and nonsteroidal anti-inflammatory (NSAID) drugs interfere with platelet function or blood clotting, so that is why doctors will recommend that people with ITP not take them. Very true, amazing how different every body can be. And whether some events are merely coincidence (like your auto-immune issue and your Ibuprofen allergy) or connected is often a guessing game. I have a thyroid disorder as well as the ITP, diagnosed at the same time, but doctors are hesitant to make a connection, other than the fact that they are both auto-immune disorders and it is common to develop more than one. Hope you are doing better, and thanks for stopping by!

  5. sueroebuck says:

    I didn’t know that’s what idiopathic meant…oh I’m sorry that you have this ITP. Doctors don’t know what causes so many of our problems, do they? Hope you go into spontaneous remission soon and your platelets start behaving themselves!

  6. You have a great attitude! May you always be the non-critical patient in the office.

  7. Ann says:

    Here’s some good news. Quinine only need be avoided in those with quinine induced ITP. So no need to avoid the gin and tonic. I have ITP too and will raise a glass to you next time I’m imbibing.

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