When to go for a CBC (do you have a Samsung watch?)

Hi newly diagnosed person here,

last summer i had a number of episodes of petechiae and heavy bruising which cleared for six months and returned a few weeks ago. Since the petechiae showed up on a Saturday and it was barely any compared to during the summer, i went for the blood test on Monday morning and was down to 6k. I responded well to the IVIg & dex, and this past Monday had a platelet count over 200k.  We'll test weekly the next four weeks and then i am to go back to looking for symptoms and getting a CBC test to check if i've dropped.

If petechiae are the only symptom to trigger a CBC that seems ... late to wait - leading to another hospitalization or need for IVIg. And testing because i feel tired seems hard to tell from other exhaustion and fatigue.

I noticed a few things before the petechiae this time, but don't remember from the summer:

* shortness of breath -- i thought it was the cold weather
* a strange urine smell -- i thought it was just strange, or maybe dehydration? But i drink so much!

and my Samsung watch started yelling at me because my heart rate variability had shot up. Samsung watches started having an "Energy report" in the past few months. Mine mainly tells me i haven't done enough exercise or have done too much (as a sedentary person any little bit of exercise is a big change and the report overreacts). 

So i wondering -- and my hematologist Raj Kasthuri at UNC Health -- if sleeping heart rate variability  might be a precursor to a platelet drop and a signal of an ITP flare.

Cheers,
judi

I had shortness of breath after dexamethasone.

I don't know about the heart rate variability but I have gotten linear results from Papaya leaf extract, 500 mg pills.

Its been 6 months, and I''m still working on it, though.

First, after 2 months, I added papaya leaf extract to dexamethasone treatment. In fact, the dex was first and I had no platelet response, Then I tried 1 pill a day of papaya leaf extract, and the platelets shot right up.

Then the platelets  went down, without papaya leaf extract. My hematologist wanted to try  second line drugs, and I let him know I wanted to try just papaya leaf extract. Or, actually, he ordered more dex, to do first. He didn't know what I did earlier. He was only giving me a few days, so I took 16 pills papaya leaf extract, by itself, in 3 days. The platelets went way way up, even past normal.

Then I tried one pill every other day, and that wasn't enough.

Then I tried one pill a day, and that wasn't enough.

Next was  4 pills a day, every 4 days, and that worked a little too well.

Then I tried 4 pills once a week, and that didn't work.

Now, I'm going to try 4 pills every 5 days. So still working on it, after 6 months.

Sorry if this doesn't exactly answer your question, but we've been going at this about the same length of time, and it seems like you're looking for a way of staying out of the hospital. I stay out of the hospital, and away from the steroids with papaya leaf extract. When I first had the bad blood count, it was off to the hospital, but no more, as long as the papaya leaf extract continues to work linearly, and predictably. 

As far as when to go for CBC, for me I go every 2 weeks, mostly, until I get things figured out more strategically. It takes a while, for sure.

My shortness of breath was before the dex. Thanks for sharing!

We do tend to blame everything on causing a low platelet count. If your count is good now maybe the wait and see is ok. I did that and then had a tetanus booster that dropped my count to the gutter and had to treat. Have you talked to your doctor about your heart rate?

Yes, my hematologist is also curious whether heart rate variability might be a signal of platelet dropping (not a cause). I hope to find something that might be a useful signal of platelets dropping under 30k before petechiae show up.

Its difficult, but if you are feeling unusually tired, that is a clue. I just now, with my latest CBC, thought my platelets would be high, but admittedly was feeling like they are low. Well,...they ARE low... Seems like the papaya leaf extract let me down a bit this time, unless my platelet number got lower than I realized, before I had the latest round of pills... And therefore is taking more to bump it back up... Disease of questions...

One thing that I do is speed typing as a hobby. My typing has not been going too well, for me, so that is a clue also. So, if you want to know how you're doing, your wpm might help you to get an idea. Just not the same fluidity. So if you happen to have a hobby that deals with numbers and quickness, that could help. I suppose any video game. Speed typing is like a practical video game.

Hi Judi,
Your idea is plausible but unproven, so consider tracking it with your Samsung watch alongside platelet counts and discussing it with Dr. Kasthuri as a potential early warning tool.

We did talk and he does think it's intriguing. If anyone else is using Samsung Health i'd be happy to share my analysis notes with them once i get the data parsed. (I am trying to determine if there were previous signals correlated or uncorrelated with platelet drops before the watch started reporting to me HRV overnight.)

I said earlier that papaya leaf extract may have let me down, unless my count might have gotten really low. Well, I expect that is what happened, because second "pulse" of papaya leaf extract brought my number from 41 to 465 in one week. It just works, for me. I'm guessing its not the production of platelets that is a problem for me, but who knows. This will keep people out of the hospital, or generally keep people from the other drugs, if said people are like me. The leaves are still a bit a of a challenge digestively speaking, so not without their problems.

Possibly.  I waited too long this time and got all the way down to 2k when I finally tested. Bad, bad of me.  Won’t be doing that again.  Luckily I responded well to Prednisone so they gave me that and sent me home instead of over to the hospital.  Anyways, I did not see any Petachia until just before testing.  So yeah, my main indicator is actually bleeding in my nose that I need to pay careful attention and fatigue. I was very tired the few weeks before and should have taken that as a sign to go get a cbc.  HRV, maybe. Probably. I actually have a sleep number bed that measures that and it did say HRV had changed so… Still so many things affect that that I don’t think it’s anything other than a secondary clue to the more obvious ones like my nose and gums bleeding. I just got lazy about it…

Good to know about the sleep number bed! Thank you for sharing your observation!