Low platelet count (Thrombocytopenia)

Nathan Brooks4 · 2007-12-05T17:52:38+00:00

Hey everyone, I had some bloodwork done about six months ago, and my doctor told me everything looked great—aside from some slightly elevated cholesterol and t…

Charles Doyle49 Newcomer

2 messages
joined Dec 2007

#21 · Dec 10, 2007

My doctors are claiming it’s hereditary, but honestly, nobody in my family has ever dealt with this—not that I know of. I don't get how your platelet count just bounces back without meds... but hey, good for you. If you figure out the secret, let me know... Unfortunately, mine won't budge on its own, so I'm looking at a hospital stay. I'll check back in a few weeks once I've recovered from the corticosteroids. 😢

Andrew Gonzalez70 Newcomer

4 messages
joined Dec 2021

#22 · Dec 13, 2007

Apparently, there are several different types of thrombocytopenia out there. Mine seems to be autoimmune, though even my doctors can't quite pin down what triggered it.

Robin Allen6 Newcomer

2 messages
joined Dec 2007

#23 · Dec 13, 2007

I suppose I should start by saying there’s really no need to panic, since this whole thing is just about your platelet count

It basically happens when your platelets are being cleared from your bloodstream faster than your bone marrow can step up and replace them.

The good news is that the condition is manageable. I imagine your doctor has already run all the necessary labs and probably put you on Pronizon, which should ideally get things back on track within about a month if you stay consistent with it. You’ll definitely want to circle back with your physician after that, though, because you'll need regular blood work to keep an eye on those fluctuations.

I don't mean to alarm you, but I actually wanted to offer a bit of encouragement instead—in life-threatening situations, medical teams can handle things quite easily with a quick blood transfusion or even, I think they call it in certain parts of the country, a splenectomy.

If I were in your shoes, my advice would be to stick strictly to whatever medication your doctor prescribed and try to load up on organic, pesticide-free raspberries and blueberries. If you're able to afford it, maybe even spend some time out in the mountains while you continue your treatment.

Wishing you all the best

Betty Sullivan3 Newcomer

7 messages
joined Nov 2012

#24 · Oct 9, 2008

Hey everyone! I’d love to get a conversation going here with anyone who has dealt with autoimmune thrombocytopenia. Please jump in and share your stories—I'm really looking to swap experiences. How did your treatment journey go? Did anyone actually manage to beat it, and if so, what worked for you? It’s been one year since my diagnosis, and right now we’ve started incorporating some Aloe Berry Nectar into our routine, so we’ll just have to wait and see how things progress...

Sean Booth58 Newcomer

1 message
joined Oct 2008

#25 · Oct 13, 2008

Betty Sullivan3 said:Hey everyone! I’d love to get a conversation going here with anyone who has dealt with autoimmune thrombocytopenia. Please jump in and share your stories—I'm really looking to swap experiences. How did your treatment journey go? Did anyone actually manage to beat it, and if so, what worked for you? It’s been one year since my diagnosis, and right now we’ve started incorporating some Aloe Berry Nectar into our routine, so we’ll just have to wait and see how things progress...

How are you all managing the treatment? Personally, my platelet counts have always stayed low—somewhere between 80 and 120—but I don't really deal with symptoms like easy bruising or heavy bleeding. I'm curious, what kind of symptoms are you all experiencing?

Ethan Perez5 Member

13 messages
joined Sep 2008

#26 · Oct 14, 2008

Betty Sullivan3 said:Hey everyone! I’d love to get a conversation going here with anyone who has dealt with autoimmune thrombocytopenia. Please jump in and share your stories—I'm really looking to swap experiences. How did your treatment journey go? Did anyone actually manage to beat it, and if so, what worked for you? It’s been one year since my diagnosis, and right now we’ve started incorporating some Aloe Berry Nectar into our routine, so we’ll just have to wait and see how things progress...

I went through this when I was just a tiny baby, so the details are a bit fuzzy... all I know is I woke up one morning covered in bruises, bleeding from my nose and ears... it was terrifying. Those were the symptoms... and yeah, my platelet count hit zero. They even had to perform a bone marrow biopsy because they were worried about leukemia and other things...

As for treatment, I know I consumed a lot of celery juice and blueberries... combined with a strict diet of spinach, chard, and plenty of iron-rich foods. They gave me everything they could, and thank God, I recovered...

Brian Ross4 Newcomer

2 messages
joined Dec 2008

#27 · Dec 12, 2008

There is no cure for this. I have been battling thrombocytopenia for fifteen years now... during the first three years, I was practically living in the hospital due to constant bleeding episodes. These days, things are manageable; my platelet counts sit between 60 and 100, which is nothing short of a miracle. However, whenever I catch a common cold or some other trivial illness, my platelets plummet to zero. The standard treatment involves corticosteroids, though frankly, they often fail to do much—yet they remain the only option available. To manage this daily, I rely on preventative supplements like Vitamin C and iron. It is a lifelong struggle characterized by cycles of stability and crisis. One must be incredibly cautious regarding physical impacts or even minor infections, as those are usually what trigger a crisis and subsequent bleeding.

Lisa Green4 Newcomer

1 message
joined Mar 2009

#28 · Mar 18, 2009

I was wondering if anyone else here has dealt with digestive issues because of thrombocytopenia? Or maybe someone has heard of a case like that before...?

Brian Ross4 Newcomer

2 messages
joined Dec 2008

#29 · Mar 23, 2009

Digestive issues are a possibility.

Olivia Kern2 Newcomer

1 message
joined Mar 2009

#30 · Mar 24, 2009

I can really only back up what’s already been said here. I went through this when I was about 15—ended up being treated at Mayo Clinic—and ever since then, for the last 20 years, my platelet counts have stayed stubbornly low. In a normal scenario, they usually hover somewhere around 70 or 80.

As for blood clotting issues, I haven't really noticed anything out of the ordinary compared to everyone else. Any digestive stuff I deal with seems pretty standard, and I wouldn't necessarily link it to the thrombocytopenia. I know I should be eating better and keeping up with checkups (which, let's be honest, I don't do because life just gets so hectic), but that's just how it is.

That said, I have two little girls, and I can't help but worry about them. Is there any new research or anything suggesting whether this runs in the family? People tell me it shouldn't be hereditary, but... you know how it goes.

Matthew Morales87 Newcomer

1 message
joined Mar 2009

#31 · Mar 26, 2009

I’ve been dealing with thrombocytopenia since it first hit me back in 1987, when my platelet count dropped all the way down to just 1. It was terrifying. I ended up spending a month in the hematology ward, surviving on high doses of corticosteroids until things finally stabilized, but there was a catch... steroids help the count, but they take a toll on you too. This cycle dragged on for about a year before my doctors decided a splenectomy was the only way out. After the surgery—where they used 70 of my own platelets plus who knows how many donor ones—my levels absolutely soared, staying right around 300 without any medication at all. For ten years, I actually forgot what it felt like to take steroids. Then, out of nowhere, the madness returned. My platelets plummeted to 10, and I was covered in bruises everywhere.😕It turns out there was a suspicion of an accessory spleen, which was later confirmed by a CT scan. These days, I manage to keep my counts within the normal range using low-dose corticosteroids (about 6 mg), but it’s a constant struggle. My levels will suddenly crash for no apparent reason, forcing me to bump up the dosage, only to scale it back down once things settle. We’ve discussed removing the accessory spleen, and I’ve actually been hospitalized twice for the procedure, but both times the surgeons decided against it because my counts happened to be in the normal range at that moment. Every time I see a bruise appearing, I start to panic.😠So, that is my long and winding story with platelets.

Alexander Ward8 Newcomer

1 message
joined Feb 2010

#32 · Feb 25, 2010

hey everyone.. been scrolling through the site but haven't found much info specifically about kids.. my little angel is 2 and her platelet count is down to about 40,000, while the WBC is at 14,000. how risky is this for a toddler and what kind of treatment are we looking at? honestly just really worried and we don't know anything about these kinds of conditions... thanks

Chris Barrett Newcomer

1 message
joined Apr 2010

#33 · Apr 12, 2010

Brandon Thomas89 said:Look, those numbers are just reference points based on some statistical averages. For one person, a platelet count of 100 is totally fine, while for someone else, it’s a medical emergency. It’s like body temperature—my baseline is usually around 96. My "normal" is different from yours.

Take my dad, for example. He’s battling CML, so his platelets hover between 8 and 30, and his white cell count sits somewhere between 80 and 170 (when the standard range is around 4.6). When his iron levels finally hit 100, we throw a party...

Hey, is there any way to boost platelet counts besides using corticosteroids? I’m sitting at 38 right now, but seven months ago I was down to 3, so they kept messing with my Medrol dosage. Just wondering if there’s anything natural out there. Thanks in advance.

Lawrence Bishop34 Member

32 messages
joined Oct 2010

#34 · Oct 16, 2010

Well... looks like someone else is starting to suspect this might be something more serious.
I’ve got these tiny red dots all over my stomach. They look like little bruises, almost like I was poked with a bunch of needles. 😁The thing is, I’ve been treating pityriasis rosea... My entire medical team here has seen these spots, but not one single doctor thought to say, "Hey, let's check her platelet count" just to rule out anything else. Then I start digging around online and realize—wait, this actually could be it. 😢I'm heading straight to the lab this Monday to get bloodwork done on my own initiative. In the meantime, has anyone else dealt with these kinds of spots? I don't have any other symptoms at all... I feel fantastic, truly! Give me some peace of mind before Monday. :/

melloworca6 Regular

551 messages
joined May 2010

#35 · Oct 16, 2010

So, are you getting bruises all over your body for no reason at all?

Lawrence Bishop34 Member

32 messages
joined Oct 2010

#36 · Oct 17, 2010

melloworca6 said:So, are you getting bruises all over your body for no reason at all?

No, honey, no bruises. Just these red spots that look like birthmarks—two larger ones about 3mm, and then these tiny red dots everywhere else, almost like I've been poked by a needle. 😂 It’s been going on for about a month now. 😕 I had my liver enzymes checked because of this, and they were fine, but I haven't had a full blood panel done recently. So, I'm heading in tomorrow to get that sorted out once and for all. What really bothers me is how none of the dermatologists I've seen even suspected anything! Not one single doctor even mentioned it. But last night, while I was searching online, this was the first thing that popped up. Bruises? No. Not a single one that appeared out of nowhere—only the ones where I know I actually bumped into something. 😁 I am terrified! But I'm trying to stay positive since I feel perfectly fine, thank God! Now I don't even know...

melloworca6 Regular

551 messages
joined May 2010

#37 · Oct 17, 2010

Man, I’m just crossing my fingers that it isn’t thrombocytopenia! 🙂 Though, if you ask me, those lipids would probably spike because of it—at least that’s how it played out with this one girl I know, and with her dad too.

Lawrence Bishop34 Member

32 messages
joined Oct 2010

#38 · Oct 18, 2010

melloworca6;29549074 said:I'm crossing my fingers that it isn't thrombocytopenia! 🙂 Though, if you ask me, those spots might just be fat globules popping out—that’s what happened with a girl I know and her dad.
Googling this was a disaster. Those petechiae can point to anything, and none of it sounds good 🙂 I just handed in my blood work for analysis... results should be in around 3 PM. Ugh. I feel terrible! Just thinking about the possibilities makes me sick. I really hope everything turns out okay. I'll check back in later today. Bye.

melloworca6 Regular

551 messages
joined May 2010

#39 · Oct 18, 2010

Look, don't bother Googling it. You're just going to freak yourself out for no reason. I’ve spent way too much time spiraling down internet rabbit holes myself, and honestly? I finally told myself enough is enough. It’s just not worth the anxiety.

Lawrence Bishop34 Member

32 messages
joined Oct 2010

#40 · Oct 18, 2010

melloworca6 said:Look, don't bother Googling it. You're just going to freak yourself out for no reason. I’ve spent way too much time spiraling down internet rabbit holes myself, and honestly? I finally told myself enough is enough. It’s just not worth the anxiety.

Well, look at me— 🙂 finds my bloodwork perfectly fine! Thank God!!! They did a deep dive into my platelet counts and everything looks great. No more searching online for me!
I end up scaring myself half to death. I can't even function normally; I act like a total maniac until those results come back! Who cares what 🙂 matters is that I'm healthy and my labs are clean. I don't care about every little thing I think I feel on my body anymore. Thanks for the support! It really means a lot 🎉 big hugs to everyone!😘

Low platelet count (Thrombocytopenia) - experiences/advice?

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