Tuesday, August 05, 2008

Alphabet Soup

It seems that PCOS isn't enough.

It seems that Graves disease isn't enough.

I can now, most likely, add ITP or Idiopathic Thrombocytopenic Purpura to the list of things wrong with me. Aaagh!!

Let me back up. About a month ago my allergist sent me to have some blood drawn. So did my endocrinologist. So I went to Quest to get it drawn - with both in hand. Yes, this is confusing to lab techs. But in the end I think it was the grace of God basically. Because all the extra lab work got sent to my endocrinologist and while my allergist said "um, you have low platelets" meaning nothing to me, my endocrinologist said the fateful words, "you have low platelets, I don't remember ordering these tests, but you should see a hematologist - it's probably nothing" - the last time someone said those words to me I was being sent to see an Endocrinologist for the "probably nothing" thyroid problem. And we all know how that turned out - I have the scar on my neck to prove it (even if I had heard from every doctor since how great of a scar it is and how you can hardly see it).

So, of course I'm thinking it's nothing - low platelets - my blood is clotting just fine - I haven't had any weird bruises. Nothing.

I've been so busy working the writer's conference that I haven't really had time to think about any medical issues but today was my appointment so of course I had to go. My first meeting with the doctor didn't tell me much. Basically his feeling was he wanted to re-test my CBC and see if we got the same low platelet result. If they came back normal then he could say goodbye to me and it was just a strange fluke.

Of course that didn't happen.

It's worse.

Instead of being 69,000 per micro liter of circulating blood (normal is 150,000 to 450,000) my platelets have actually dropped to 40,000 (he ran it twice - once it came up 40,000 and once it came up 39,000 - neither is good). In case you're wondering - they can run the CBC right there in the office so we had immediate results - the rest of it has to be sent out but he'll have further results when I see him again next week.

What does that mean?

We're not 100% sure yet but he believes I have ITP which is a rare autoimmune disorder (yes, another autoimmune disorder but no, he doesn't think it has anything to do with the Graves). No one knows what causes it but it can come on at any time and it's where the immune system malfunctions and begins attacking platelets as if they were foreign substances. First my thyroid, now my platelets. Great.

Treatment:

I have to wait a week (he wanted me back in sooner but I'll be gone this weekend) to see if my platelets drop further. If they had stayed the same, even though they were low, that could've been my normal but to drop so much so quickly isn't good. By the way 30,000 and below is very dangerous.

If my platelets continue to drop then we have to treat. And the treatment is? First round of treatments would be monthly infusions by IV. Other ideas would be months of steroids but the side effects of that would be brutal. Worst case scenarios? I'd have to have my spleen removed and I'd have to have my bone marrow tested. It would be normal if I have ITP but would be abnormal if the cause is actually something else.

ITP is a diagnosis of exclusion meaning they've ruled out everything else. They did draw about 12 vials of blood to test for a dozen other things.

What does this mean for my everyday?

I have to be careful. No car accidents. No competitive sports :) I guess my life is over! Kidding. But I do have a script for steroids in case something happens and I begin to bleed uncontrollably.

In the best case nothing changes and we wait it out - maybe six months, maybe a year. And then maybe it would return to normal. That would be acute ITP. Unfortunately this type occurs mostly in children who have had a virus. Adults are more likely to get chronic ITP which would be something I would end up living with for the rest of my life.

As bad as all this is and obviously frightening for me I believe it's the grace of God that the allergist ordered the blood draw. I have no symptoms at all but I could be in a danegerous situation if I got in an accident. At least now we know. Even the doctor said it was unusual that I came in without symptoms and that this just kind of appeared.

Want to know more?

Check out: https://ssl.search.live.com/health/article.aspx?id=articles%2fmc%2fpages%2f2%2fDS00844.html&qu=Idiopathic+Thrombocytopenic+Purpura

Sorry you'll have to cut and paste - I can't get the link to come up. Or do a search for Idiopathic Thrombocytopenic Purpura and you'll get a lot more information.

13 comments:

Cadi, Lance and our 4 miracles. said...

I like how he told you to try and avoid a car accident. Cause you know, most of us don't really do that?? I'm really hoping for your sake that this will straighten out on its own. I've heard of this but don't remember the specifics so I will go to the link. I'll write more through email.

Cadi

Denise Wheeler said...

Lots more prayers coming your way. Man, apparently you like to do things in triplicate. Just kidding. I hope that you are a total fluke and only have the acute form.

MaryBeth said...

Many, many prayers coming your way!!!

Cherie said...

Oh no Dorinda!!!!

I'm sorry. I'll be praying for complete healing.

Kristy said...

Whoa, Dorinda...we'll be praying! I hope you have been able to enjoy your conference and get some good feedback. Talk to you soon~

Angie said...

Dorinda I will keep you in my prayers.

Dorinda said...

The doctor specifically said not to throw my head through any windshields and no surgeries. All things high on my list normally... But I guess no tummy tuck anytime soon :(

Oh, and I forgot to add no Zyrtec for a week just in case it's an adverse reaction to that though if it were I would be reportable as the first person ever to experience this side effect so we're kind of doubting this is the cause but maybe. Just means I'm going to be itching like crazy or drugged up on Benadryl while at the writer's conference...

Misty said...

I will keep you in my prayers. I also have the PCOS & thyroid issues,so I can sympathize on those. I do hope this is just a fluke and it all works out to be just a big hassle that you look back on.
Misty

Candace Hickey said...

Dorinda, I am so sorry to hear this...thank goodness the doctor had you do the blood tests. It sounds like "someone" was looking out for you. :)
Keep us posted....sending prayers and thoughts your way.

Cherie said...

no zyrtec?

i would die. seriously.

Tripletblessed said...

Dang that sucks! I'm so sorry that you are going through all this. I'm praying you have the acute kind and no serious treatments are necessary.
Ugh no Zyrtec hope that isn't to rough!

Karen @ ChezPerky said...

Oh goodness. That's no fun at ALL! The fun just keeps on coming!

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