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TOPIC: New fascinating article - "How Low Can You Go"?

New fascinating article - "How Low Can You Go"? 6 years 1 month ago #33779

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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This is just one paragraph from the article, but the whole thing is worth reading.


Another interesting phenomenon was the appearance of a population of young platelets after destruction of the majority of circulating platelets. The authors showed that this population did not alter the overall platelet function. However, if at low platelet counts platelet function trumps number (as Karpatkin showed many years ago), these young platelets may play a disproportionate role in maintaining hemostasis. An important factor that may impact this model is the likely large release of highly thrombogenic platelet microparticles on immune platelet destruction. The authors did use a second immune model but did not explore thrombocytopenia induced by other means, ie, hypoplasia, in which the level of microparticles would be expected to be far less. These issues become important when comparing bleeding and clotting tendencies in ITP patients, who have elevated numbers of young platelets (and microparticles), with chemotherapy patients, who do not. At least 1 study supports the notion that ITP patients bleed less than chemotherapy patients with the same platelet counts presumably because of the increased function of young platelets.


bloodjournal.hematologylibrary.org/content/121/24/4817.full?ct&ct=67127b083ab23fbe6eb507710fa0f6ece6c261274bbd0ec2c5abf7be19e83d4e3d1ac229d8867c3ef57a51943d2f0af608bbd87a5360314d782924871eb76eb4



Here is another article that supports the above:

bloodjournal.hematologylibrary.org/content/121/24/4938.abstract?ct
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New fascinating article - "How Low Can You Go"? 6 years 1 month ago #33780

  • Sandi
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I think this is a great topic for discussion if anyone is interested. It makes you think about the fact that high numbers may not necessarily be the way to go with ITP as clotting factors seem to be increased in most patients.

I once read an article (wish I could find it) that stated that the body may lower platelets (on purpose) as a protective measure against clots in certain individuals. After reading things like this, it makes me actually prefer counts in the 50k to 150k range. "Normal" may not be better.
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New fascinating article - "How Low Can You Go"? 6 years 1 month ago #33797

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Nice find, Sandi!

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New fascinating article - "How Low Can You Go"? 6 years 1 month ago #33826

  • milly
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Hey Sandi, I tried that link and I cant get the full article any chance you can try it again. I am doing some research at the moment it appears as though my dad has had low platelets for years, maybe a family thing???
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New fascinating article - "How Low Can You Go"? 6 years 1 month ago #33844

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Milly I was like you all you do is sign up. Took me 2 minutes no cost and I could view the entire article.
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New fascinating article - "How Low Can You Go"? 6 years 1 month ago #33845

  • milly
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Thought signing up might be restricted, funny what did I think would happen... The net police come get me. Thanks I will go sign up :-)
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New fascinating article - "How Low Can You Go"? 6 years 1 month ago #33847

  • Sandi
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:woohoo: :silly: :woohoo: :silly:
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New fascinating article - "How Low Can You Go"? 6 years 1 month ago #33858

  • Bunnie
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I once read an article (wish I could find it) that stated that the body may lower platelets (on purpose) as a protective measure against clots in certain individuals


I can easily believe that. My sister who has a myloprolific blood disorder which causes too many platelets has "Acquired" Von Willian Brands which is a missing factor in the clotting sequence. The docs don't believe that it’s the typical hereditary version.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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New fascinating article - "How Low Can You Go"? 6 years 4 weeks ago #33938

  • Vdeutsch85
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That is really interesting. I wonder if it some sort of protective agent for me. I have had several family members die of strokes. I have also had a grandfather with blood clots. My doctor said itp patients also suffer from clotting issues. Is this the body's way of protecting itself from this?

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New fascinating article - "How Low Can You Go"? 6 years 4 weeks ago #33939

  • Vdeutsch85
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Feeling good with my 85 today!

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New fascinating article - "How Low Can You Go"? 6 years 2 weeks ago #34304

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stay positive, I had no (0) at one time. It was rough and a long duration of steriods, but i got them back up for awhile.

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New fascinating article - "How Low Can You Go"? 6 years 2 weeks ago #34309

  • Sandi
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V:

It's very possible. I did read an article once where the theory was that the body lowered platelets purposely to protect against clots. As time goes on, ITP is being linked more and more to clotting disorders.

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New fascinating article - "How Low Can You Go"? 5 years 11 months ago #35452

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This is exactly another reason why if I ever need to go on a maintenance med like nplate that I would shoot for just hitting a little above the 50k mark. It's always best to minimize the amt of medicine you have to take anyways and clearly additional platelets are not only not really necessary but may in fact be detrimental so there would be no reason at all to take the additional medicine and the cost/risk that involves.
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New fascinating article - "How Low Can You Go"? 5 years 11 months ago #35525

  • weirdjack
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"at low platelet counts platelet function trumps number"


Words to live by.... B)
.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50131

  • Barbarai
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Sandi,
Is thsi ITP blog for people loctaed in Texas?
My teen daughter 16years old was diagnosed with ITP today. I am so worried. I think the Meningitis vacinne that she was given two weeks ago might have caused this. Have you ever heard of this possibility?
Thanks you, Barbarai

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50138

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Barbara - the Forum is for everyone, no matter where they live. We have people from other countries here.

Vaccines are known to trigger ITP, but it can be impossible to prove it.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50140

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Sandi wrote: I once read an article (wish I could find it) that stated that the body may lower platelets (on purpose) as a protective measure against clots in certain individuals. After reading things like this, it makes me actually prefer counts in the 50k to 150k range. "Normal" may not be better.


Last summer my hematologist intimated this when we were discussing my situation. He said that my current counts of around 100 may be "normal for me," though didn't give any of the underlying science or related research. I wish he'd sent me home with a copy of this article.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50152

  • Sandi
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This article was an eye-opener for me. You tend to think that ITP is a major malfunction when actually, the body could be trying to prevent another problem by lowering platelets. People produce antibodies to fight illnesses. Maybe anti-platelet antibodies are the body's way of fighting a possible tendency to clot. After reading that and finding out that I do have a possible problem with a clotting disorder, I would be more than happy with counts under 75k.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50157

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I've had several rounds of testing for clotting because I'm a hemophilia C carrier and may have a surgery soon. My results are consistently in the middle of the reference range. So I wonder if there are more complicated interactions, perhaps between platelet production and the HPA axis, thyroid function, or liver function. I look forward to finding about more on this subject.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50161

  • Sandi
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Do they test you for the tendency to clot or just the tendency to bleed? People can have both at the same time. (You probably know that).

I'm sure there is still so much that is not known about all of it. Just because a person has no detectible antibodies does not mean that they do not have a problem. In 1982, I had antibodies that showed up on a blood test for a marriage license. Back then, it meant syphilis. I knew that was impossible but had to get treated to get the license. I was young and just did what I was told, but knew something was wrong. Now we know it was a false positive and I really had APS antibodies. There was no connection back then. In 30 years, there might be many more antibodies that are discovered. You can't test for them if you don't know that they exist.

I asked my doctor for years to test me for the APS antibodies. He always said it wasn't necessary. One day I mentioned the false-positive syphilis test. He then suddenly decided to test for it and I did have Anticardiolipin Antibodies.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50319

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Hi Sandi,
Thanks for this article, it is interesting. I have often wondered actually how dangerous low counts are as obviously the doctors are operating under the assumption of the standards identified, but how worried should I be with platelets below 10,000? At first they panicked and put me in hosptial and after two weeks no improvement and not seeming to have been at risk of bleeding to death they released me with no improvement. At first I stayed home and avoided going in cars etc and gradually returend to living relatively normally, albeit having to give up exercising and horse riding which are a really big part of my life and I am still here and nothing in terms of my blood count has changed, so makes me wonder, how dangerous is my count for me really? Don't suppose there is any real way to test that, but this article is certianly interestng on that front!

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50351

  • Sandi
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Symptoms can tell a lot. If you have few, chances are you are safe for daily living. I would stay off of horses though, unfortunately!

What treatments have you had?

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50353

  • Aoi
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@Sandi: They were only interested in clotting, so ran the usual PPT an aPPT tests. My hematologist seemed satisfied with my normal results and didn't want to pursue it further. My last PCP (I'm currently looking for a new one given my recent move) didn't feel that pursuing any of this was important.

I have some suspicions and occasionally suggest a line of inquiry when I see any of my docs, but prefer not to push them too hard since they seem not to respond well to that kind of thing.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50361

  • Sandi
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I get why the PTT is important for you, but it's really no skin off their nose to order a simple APA blood test. My Hemo blew me off for years too and kept saying that my counts went 'too low' to have APA's since most people with APS have mild thrombocytopenia. He was wrong.

Of course the reasoning is that unless you have a clot, they won't treat it anyway, although I've had three doctors tell me to take daily aspirin. I do. Odds of having APA's with Lupus are higher as I'm sure you know. Every article I've read states that having APA's does not affect treatment choices for ITP but I'm sorry, I would take that into consideration.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50364

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I agree with you, Sandi. If you want to become a hematologist, I'll gladly be your patient. :) Meanwhile, I watch and wonder about things like this. Also, I'm routinely amazed at how willing my docs have been to stick me inside machines, stick electrodes into me or glue them onto me, press wands against me, and otherwise "do stuff". But they usually order little more than a CBC, and at times I have had to remind them to do that, and then they grudgingly agree. Oh well.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50369

  • Sandi
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Ha, we can open a practice together! You've got a great understanding of all of this. :)

True, I never gave that much thought. Tests and meds....sure! But a simple blood test has to be such a big ordeal.

Doesn't your Rheumatologist even order CMP's? I get a lot of blood work every time I go....CBC, CMP, SED rate, Vitamin levels and the occasional Lupus antibody tests and thyroid levels. She will usually also do any other test that I might mention.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50371

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My last rheumatologist told me to go away because he felt I didn't have any issues of interest. Having just moved to a new area, I need to assemble a new healthcare team. Maybe I'll be able to find more motivated and cooperative docs this time round.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50381

  • Sandi
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He told you to go away? Wow. Shame on you for being a boring patient for a little while. Rheumatologists should be seen regularly to avoid and prevent problems before they occur. I wouldn't have wanted to see that guy anyway after that. Good luck finding someone.

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New fascinating article - "How Low Can You Go"? 3 years 11 months ago #50436

  • Winnifred
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Hey if you open an office call me I'll be the nurse! lol

If those with low platelets due to ITP tend to bleed less with low numbers. That would explain why newer studies are showing those with low platelets might actually be at a higher risk of clotting.

On a personal note I was at a count of 4 once and only had 2 bruises. Have been at counts 12 and looked like I should be in single digits!

Keep posting articles Sandi do my best to read periodically. Need to keep updated so my hematologist and I can have something to talk about since I have to see her every 3 months or sooner depending on my counts!

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New fascinating article - "How Low Can You Go"? 3 years 3 months ago #53861

  • SusanMichelle28
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I realize this topic is quite old, however, I'm finding I need to comment. (This is my first post, I just registered today)

I have ITP. Was recently hospitalized with a count of 0 (tested 4 times in the hematologist office). For the first time ever my nose was bleeding uncontrollably. I'd been at critical levels before, 6, 18, 20, 8... Even then I'd only had bleeding gums and petechiae, with many MANY bruises.

The ER doctor, coincidentally, had said he had been researching Platelet disorders lately, sparked by a patient he had. He informed me that I had "Super Platelets" I thought that was pretty interesting. While the triage nurse had said, "Well, if you really were at 0 you'd be bleeding all over my floor, so their testing is obviously wrong." (him referring to the hematologist office)

Anyway.... :)

I also have a disorder May-Thurners Syndrome. This is a rare condition where the iliac artery crosses the iliac vein and compresses it; causing clotting. The information provided in this thread is something I've thought quite a lot about lately.

Anytime I have my platelet count up beyond normal, around 180 my leg starts hurting; even though I have two stents. I've always said many times, "God blessed me with ITP because I have May-Thurners."

My hematologist says all the time, "We can keep you from bleeding out, we can't stop a clot from hitting your brain."

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