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New to ITP, my story attached, have questions 8 years 7 months ago #34049

  • 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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The automated hematology analyzers also may produce cell counts which are falsely increased or decreased. Some analyzers, particularly the impedance based counters check only the volume and number of particles and may not be able to correctly distinguish tiny clumps of platelets and nucleated red blood cells. Platelet clumps may be misclassified as leukocytes or erythrocytes, and nucleated red blood cells can be misclassified as leukocytes or, specifically, lymphocytes. Furthermore, large or unidentifiable atypical cells, toxic immature neutrophils, and markedly reactive lymphocytes can also be misclassified. Moreover, large or unidentifiable atypical cells, toxic immature neutrophils, and markedly reactive lymphocytes can also be misclassified.

www.doctorslounge.com/index.php/blogs/page/17172

Measurement of platelet counts using automated hematology analyzers is usually quite precise and accurate. However, the accuracy of automated platelet counts can be compromised when measuring very low platelet counts or in the presence of interference from non-platelet particles or platelet abnormalities.[1] Recent studies, mainly focusing on the counts of low levels of platelets, demonstrated that automated counts were not as accurate in severely thrombocytopenic samples.[2–5] These findings are of concern because current clinical guidelines lowered the prophylactic platelet transfusion threshold to 10 × 109/L for patients without additional risk factors.

www.medscape.com/viewarticle/729880

Hematology analyzers provide reliable full blood counts but are known to be inaccurate at counting platelets in severe thrombocytopenia. For reasons not associated with the treatment of ITP, a group in the UK compared the platelet counting results of nine different analyzers produced by five different manufacturers. The analyzers studied used optical, impedance, and immunological counting technology. In conducting the study, over 3,000 counts were completed. In the low range, less that 20 X 109/l platelets or what is commonly referred to as 20K, the mean difference (the difference between the average of all counts with a given analyzer and the IRM standard) was small. For all machines the mean difference was less than 5K, for several less than 1K. However the range of readings from each analyzer was much greater. All but one of the analyzers tended to overestimate platelet counts. Eight of the nine analyzers tested overestimated platelet count by 5K or more, even though the mean difference was less. Estimates of two analyzers, on some counts, were as much as 10K over the standard. Four of the nine analyzers also underestimated platelet count by 5K or more for some samples. One underestimated by almost 10K. These results call for ITP patients with low platelet counts to pause before basing treatment exclusively on an analyzer platelet count.

www.pdsa.org/products-a-publications/e-news/2005-e-news/item/260-platelet-e-news-%E2%80%93-march-16-2005.html

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New to ITP, my story attached, have questions 8 years 7 months ago #34052

  • tamar
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I have had the EXACT SAME blood sample run twice and gotten different numbers. One time the count was 3K, and the tech could not believe it, so she re-ran it and it was 6K. She did not re-take my blood, it was the same blood. I've also had a CBC rerun when my count was about 180K (because the WBC didn't print) and the second time the platelet count was 7K lower.

Platelets are like the rice grains in chicken with rice soup. If you take a spoonful and count the grains, and then take another spoonful and count the grains, I doubt you'll get the same number twice or even 2 out of 3 times.

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New to ITP, my story attached, have questions 8 years 7 months ago #34054

  • DeeDee Marie
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Tamar,
You are right. I had mine ran one time in the morning and they were 12; some hours later they were at 33.

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New to ITP, my story attached, have questions 8 years 7 months ago #34055

  • KO27
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Sandi/All

That study presents some information that is different from what my Hema and another source has expressed and I will dig into it (though not anymore tonight!).
I appreciate you backing your assertions with citations, which is the way it should be done.

Thanks, and good night to all.
The following user(s) said Thank You: eklein

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New to ITP, my story attached, have questions 8 years 7 months ago #34056

  • 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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We could also discuss platelet microparticles. While I agree that these have nothing to do with the actual count and how we choose to treat or not treat ITP, they have everything to do with ITP and clotting. Bleeding and clotting are the main reason that we check counts, and having counts that are too high (I don't mean above the reference range) could cause more problems than the bleeding might. There have been people who had serious clots even with low platelet counts. There are a few factors that come into play, and having counts in the 200's or 300's may not be the best thing. My count was 319 the last time I checked and if I could lower it, I would. I've been told to take aspirin daily because I have had antibodies (Anticardiolipin) that cause clots. How many of you know if you have those antibodies? It's estimated that 33% of people with ITP do. I had to push to get tested.

The point is, you could go crazy with the numbers all the time. Track them, chart them, whatever you do, but it isn't going to tell you how your clotting mechanisms are. In the end, that is what matters and for that, we rely on symptoms.

"Researchers in Spain measured and tested the clotting potential of microparticles (very small bits cells) in the blood of people with ITP and found that the microparticles in these patients were more prone to form blood clots than the microparticles in the control population. This was also true of those ITP patients who had a splenectomy and were in remission. The clotting potential of microparticles may be helpful in preventing bleeding, but this condition may also make people with ITP more prone to heart attacks, strokes, and clots in their veins than might be expected."

“Increased Microparticle-Linked Procoagulant Activity In Patients with Primary Immune Thrombocytopenia”

www.pdsa.org/products-a-publications/e-news/2010-e-news/item/405-platelet-e-news-december-21-2010.html#INCREASED_MICROPARTICLES_LINKED_TO_THROMBOSIS_IN_ITP

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New to ITP, my story attached, have questions 8 years 7 months ago #34057

  • 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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Good luck, KO. Believe me, I'm not trying to argue about everything. But I've been here nearly every single day since 1998 and many questions have come up that I've looked into. I've seen it all and if I haven't, I find out.

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New to ITP, my story attached, have questions 8 years 7 months ago #34067

  • tamar
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The thing that really got me off putting importance on a platelet count as anything other than a general approximation is what happened to my counts in the several months after I got a low dose of rituxan in 2008. I had many platelet counts during the months following, with these results:

67 March 6
41 March 12
46 March 19
69 March 26
53 Apri1 2
44 April 14
63 April 25
88 May 19
56 June 3
84 June 24

So, if I'd had less frequent CBCs, I could've assumed my count was hovering in the 40s or hovering in the 60s, or gradually rising on a smooth trajectory (3/12, 4/25, and 6/24 for example). Because of the timing of my CBCs, I knew my platelets were up and down...but not how much, as additional counts might have shown even more movement. So, to me it's not really worth worrying about the number. My monthly counts have been pretty consistently 37-40K for the past 5 months. Before that, they were pretty consistently around 100K. For all I know I could be cycling between those two ranges, but since I wouldn't do anything different if that was the case, I've chosen not to worry about it.

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New to ITP, my story attached, have questions 8 years 7 months ago #34068

  • vaughanderek
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I think that keeping things in perspective is all important for those of us with ITP. We all know that platelet counts can be important for many people ,especially those with bleeding problems. We know that platelet counts vary during the day,between days, what medicines you are taking,what illnesses you have and in general are sensitive to many things. Platelet counting by machine gives a reading accurate to about 10 percent or so and depends on many factors raised above.Indeed why do you quote those last 3 figures in your readings? For most of us we are more concerned about the symptoms and what adverse side effects we get from the tratments. Life is too short to debate if counts over a certain value mean whether or not we still have ITP. Perhaps it is time to remind ourselves and newcomers to this Form of the Excellent Advice given by a very long term ITP sufferer Gort,as pinned by Sandi.

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New to ITP, my story attached, have questions 8 years 7 months ago #34069

  • tamar
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By the way, it used to be talked about here on the board that automated readings could be as much as 5K off. I do not know if there's been a change in that thinking or additional evidence that the machines are less accurate than previously thought. A swing of plus or minus 5K would make for a 10K range....

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New to ITP, my story attached, have questions 8 years 7 months ago #34070

  • KO27
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Guys,

I'm going to refrain from going head to head with the study, but something to consider is the statistical validity of same machine results over time, i.e. most of us get the majority of our results from one Hema and one type of platelet analyzer.
If I read the study correctly the issues with accuracy, for the least reliable machine, made the results statistically unreliable about 16% of the time. Again, from the worst performing machine.
And, the error rate, as a ratio, was predictably worse for people with low platelet counts than high platelet counts.
So, even if the machines used in the UK study are analogous to the machines in use here in the U.S., the vast majority of the time in the vast majority of the cases, platelet count would still be a statistically reliable data point when corrected for the machine's error rate.

But here is possibly a larger point- there seems to be a subtext of low expectations, resignation, and acceptance for people on this forum.

I don't agree with that. I don't agree that ITP comes out of nowhere and that no improvement in diet, lifestyle or environment can positively affect or even correct it.
I grew up in a very provincial part of Central Pennsylvania and the atmosphere of diminished expectations (which British forum members might recognize as well) was quite prevalent. It probably goes without saying at this point that I find this attitude unfortunate and dispiriting.

I am a big fan of reality, and I understand that most people won't solve their ITP riddle, and that for many people it may not be solvable. But suggesting that a possibility doesn't exist, no matter how much experience you have, how much hope you've seen dashed, or how many dead ends you've run into, is not compassionate. It's counterproductive.

I was wrong about the specific math of platelet counting (which Sandi correctly called me on), but my theory, that in some cases (which is all I've ever claimed) platelet count data can be statistically evaluated against external stimuli, is absolutely valid, and the study actually supports this.

I absolutely believe that in cases where the platelet changes (plus or minus) exceed the statistical margins of error and the results are statistically durable (i.e. occur over a long enough period of time to be legitimate)that the results can be compared against changes in diet, lifestyle, environment, etc. for clues to factors that may affect severity.
If it's understood and accepted that the common cold can affect platelet counts, why would it be unknowable that something else (gluten, mold, any specific allergen, etc.) does the same?

Finally, I offer this via Apple:

Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes.
The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them.
About the only thing you can’t do is ignore them. Because they change things. They invent. They imagine. They heal. They explore. They create. They inspire. They push the human race forward.
Maybe they have to be crazy.
How else can you stare at an empty canvas and see a work of art? Or sit in silence and hear a song that’s never been written? Or gaze at a red planet and see a laboratory on wheels?
We make tools for these kinds of people.
While some see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.


So here's the thing: call me crazy, but I think that for some ITP sufferers that the causes are knowable, and the riddle is solvable.
If you read back to my very first posts, I stated this, and nothing I've seen in 3 years with ITP has changed my perspective. If anything, I feel more certain about it now.
I'm not even saying that I'm one of the people for whom this is true, but that lack of certainty will not keep me from trying.

The status quo sucks. Hemas are focused on 'treatments' that have efficacy, but frequently come at great cost. The treatments are either about hobbling your immune system so you kill platelets (and disease and illness) less effectively or growing additional platelets to compensate for accelerated platelet destruction, which I liken to putting more paint on a rusty spot.

The cause matters. The cause in knowable, and we should all believe this is possible.

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New to ITP, my story attached, have questions 8 years 7 months ago #34071

  • Winnifred
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Please KO27 what I said about the numbers was not to give misinformation. I just want people to know that you can lead a normal life with ITP. That just because they have been diagnosed with ITP doesn't mean life is over. If you just focus on the numbers and treatment you will miss out on life and the amazing things that are in it.


you said "Yes, platelets are being created and destroyed everyday, but rises and falls don't happen overnight. Everybody whos had ITP for any length of time knows that platelet counts trend up and down over time, they don't appear and disappear like a magic trick."

In my personal experience I have seen platelets practically rise and fall overnight. A count of 2 one day get treatment and than get blood drawn 24-48hrs later to reveal a count over 100.


A little of my ITP history in metaphor so to speak:


1. When I was diagnosed with ITP the experts told me I would die if I went to zero. Been there done that a few times PS: your not talking to a ghost.

2. They said research shows that a splenectomy is the only cure for ITP. Research is now showing that the curative rate for splenectomy is what 60% and those numbers can drop over time.

3. When I was diagnosed the doctor told me after my first episode I was cured because I had an acute case only children had chronic ITP. Than later on in my journey I was told that children were acute and only Adults had chronic ITP.


4. My specialist said do not trust what you read on the internet. He said my information comes from this hospital they are the top in all this area.


Information I got from the ITP chat forum:

1. I've been walking around with low platelets been to zero you can survive. Yes ITP is serious and with low counts you can bleed and yes you can have internal bleeding. Someone even said they had a brain bleed and survived. But most importantly they told me I could live and survive! That just because your counts hit zero didn't mean I would die. (helped stop my nightmares)

2. They said yeppers that is what my doctor said so I had my spleen out 2 years ago. didn't work! some said 5 year some said 10 some said had mine removed last month. They stated over and over there is no guarantee what works for some doesn't for others.

3. People on this site said your acute if it last under a certain time frame 3-6 months. If your chronic over 6 months to a year. They said everyone is different there are no guarantee's you will find out if your acute or chronic over time.

4. The PDSA has contact with some of the worlds top ITP specialists.



I don't recommend anyone doing what I have done. I've been known to walk around in the single digits without treatment for various periods of time. What works for me does not work for others. I only want people to have HOPE instead FEAR. I want people to live instead of sitting there wondering what the next count will say.
In my doctors office I'm known as the non-compliant patient and I'm ok with that. Why? because I question my doctor. I researched my illness looked into all the options there were and treatment. I look at all my options look at side effects short and long term before I say yes or no to treatment. Most importantly that means for me taking the suggestions my doctor give as that just a suggestion.

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New to ITP, my story attached, have questions 8 years 7 months ago #34072

  • tamar
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KO...I hope you find what you're looking for.

I spent several years trying to find a link between my MS and my ITP. The experiences I've noted above, plus several more years of fluctuating counts in the absence of an obvious trigger, coupled with a lack of symptoms at any but the lowest counts, have led me to decide not to worry about the number. And so when I chime in on these threads, it's to share what I know and what I have seen and how that led me to my decision.

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New to ITP, my story attached, have questions 8 years 7 months ago #34074

  • vaughanderek
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Hi KO27,
You've probably guessed that I am not hung up on those platelet counts only on symtoms if they appear. Minimal treatment causing the least or no side effects is my own personal approach. Our particular ITP is probably specific to us and if we find diet changes or anything else that is effective then good. Are there any reliably based combined statistical studies available on environmental ,diet ,etc and what are degrees of probability at various levels of standard deviations from the mean? Here in the UK we have as many hopes and expectations as ITP suffers elsewhere and are aware that ITP does not "come out of the blue". In most autoimmune disorders multiple factors are responsible for the overall effect whether they are partly genetic,environmental or chance. Recently I attended the annual meeting in the UK of the ITP Support Association where Prof Rob Barker gave a presentation on understanding the immune response to platelets. Such scientifically based understanding is essential if we are to provide ultimately a cure (yes cure) for ITP. In the meantime that does not prevent us learning to provide less obtrusive treatments such as SupraMol101,or specifically engineered ,tailor made polyclonal antibody approaches. I support research into ITP causes and mechanisms because I want a cure to spare our children and grandchildren and take the positive view that there IS a cure,just as there is for MS, rheumatoid athritis, Lupus, ulcerative colitis and other autoimmune disorders. Meanwhile discoveries of less severe treatments ,or any other statistically proven approaches, will do nicely. You see we Brits do not always believe what we are told and question most things and certainly don't settle for the Dr always knows best approaches or diminished expectations.
The presentation I referred to by Prof Rob Barker can be accessed on the home page to the ITP Support Association under the heading of the 2013 Convention, presentations. Hope that will clarify my attitude to ITP as a Biochemist.

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New to ITP, my story attached, have questions 8 years 7 months ago #34075

  • DeeDee Marie
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I agree with you, Winnifred. My platelets were at 1 sometime back and my symptoms were starting to disappear. I was feeling fine. My doctor was more upset then I was. If this happens again, I plan on taking very good care of myself and try for the least amount of medication.

When I attended the ITP conference last year, one of the top specialists told me (because of my family history) not to take Promacta or Nplate. And, I believe this to be true for my particular case. Each one of us is different and may need to take a different course of action. My hemo I have does try to honor some of my requests.

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New to ITP, my story attached, have questions 8 years 7 months ago #34076

  • KO27
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vaughanderek- I think you'll read carefully what I wrote you'll understand that I was not in any way reducing the British people and your defensiveness is out of place. I don't know why forums bring this out in people.
I merely mentioned that I grew in an area with provincial social and economic attitudes and that that similar attitudes would probably not be unfamiliar in England. I think you would be hard pressed to disagree with that. In no way was I tarring the whole country as such. I mean, you guys gave the world Keith Richards, right?

I wasn't seeking to clarify your attitude, and I don't care if you're a doctor of biochemistry or Doctor Seuss. I do however think it's great that you, unlike perhaps many, are actively interested in a cure. I don't hear that said very often and when I do it's almost in the manner someone might use when describing the search for the Fountain of Youth. So yes, it's refreshing to hear a sober, educated (albeit defensive) individual speak in such terms.

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New to ITP, my story attached, have questions 8 years 7 months ago #34085

  • Sandi
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KO:

I think everyone starts out thinking like you do. What caused this? What can I do to fix it? I see those questions all the time. Heck, I was one of them at the beginning. I stayed away from NSAID's and antibiotics, tried liquid Chlorophyll, Vitamin C, changed my diet, etc. Many people try different things....stop a certain medication, change a diet, treat H. Pylori, you name it. We once had a woman here who believed that drinking her own urine would cure her. I've seen it all. Rarely has anyone had a remission from a change of lifestyle. Sometimes we see that, but have no way of knowing if the person would have remitted anyway despite standing on their head for 2 hours every day. I was really medically naive until I got ITP. That sure changed in a hurry. I read everything I could get my hands on....still do.

I am not so totally closed-minded to believe that lifestyle changes will never make a difference. Any lifestyle change for the better is great. Get rid of that mold, stay away from pesticides, eat organic, whatever it takes. But even you admit that finding the cause is next to impossible. I am trying to improve my own health and am in the process of making changes also. I'm obviously not against that.

What does and has bothered me are people who are smug enough to claim that if a person would only do this or that, they would get better (not accusing you of this). The world is filled with some pretty sick people who have tried many things and are still very ill. Should we make them feel guilty that they just didn't try hard enough? It's their own fault because they just won't eat that dandelion weed or drink that green grass shake? People die waiting for that cure, people become debilitated waiting for that cure, and most don't just sit around and allow things to get worse. Would you say that Annette Funicello suffered and died needlessly? From her documentary, it's clear that she tried awfully hard to stop the damage that MS caused. Many people DO try....desperately. There are many autoimmune disorders and sadly, not one of them has a cure. Every single one has treatments that may or may not work. ITP is no different. Yes, believing that a cure is possible at this time is like searching for the Fountain of Youth. It's just too complex, but they are working on it. Getting close, but not there yet. I don't expect it in my lifetime. There are remissions though and that is always possible if one is lucky enough.

Yes, people do come to a point of acceptance. That is part of human nature. It's not giving up, it's moving on to emotionally accept that a bad thing has happened and instead of dwelling on it, you move past it and start enjoying life again. You can spend your days focused on the numbers and fretting over the next count, or you can put ITP on the back burner and realize it's going to do what it's going to do. Of course, continue to improve your lifestyle, but do so to improve your overall well-being, not just raise your counts because it's just a set up for possible let down. I think the people who move on with a good attitude are strong, emotionally balanced individuals. I have never thought of them as giving up; I admire them!

I can honestly say that I went into remission when I least expected it. I didn't do anything different and in fact, I began taking a lot of N-SAID's around that time. It just sort of happened when I pretty much said the heck with it (8 years after diagnosis).

You may not believe in genetic predisposition, but keep reading about it. Autoimmune disorders run in families....there is a reason for that. Both my sister and I have had ITP (about 23 years apart). I have Lupus, my other sister has Discoid Lupus. My daughter has Graves Disease. A lot of us have more than one autoimmune disorder. I have a cousin with MS and another cousin whose daughter has MS. We all grew up in different areas. In 1982, I had blood work that came back strange. A weird antibody that no one linked to Lupus until a few years later. I wasn't diagnosed until 2006, but I had it simmering all that time until a trigger came along. No, it didn't just come out of the blue and I even had a doctor tell me in 1989 that it's possible I could one day develop Lupus. He was right. Could I have prevented it? I have no idea. Have you read any in-depth articles about autoimmunity? Until you do, don't discount predisposition. There are some pretty factual articles out there and they make sense. If you think the treatments for ITP are bad, you should try some of the ones for other autoimmune disorders. It could be worse.

BTW - I think discussions like this are interesting and thought provoking. I don't consider them negative unless there is bashing going on. If anyone can learn something from anything that is said, that is a good thing.

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New to ITP, my story attached, have questions 8 years 7 months ago #34087

  • 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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New to ITP, my story attached, have questions 8 years 7 months ago #34097

  • vaughanderek
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I agree with you Sandi on the subject .You have seen it all and have a considerable depth of knowledge and reading in this and other autoimmune areas,and come to terms with it over many years of suffering.
In answer to KO, I hope that I was not being defensive for my fellow country men/women only pointing out that as elsewhere we all have our hopes and expectation no matter from which society we come from. ITP knows no Borders . By the way I did like reading the Dr Seuss books to my children.
Derekl

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New to ITP, my story attached, have questions 8 years 7 months ago #34099

  • weirdjack
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I should have read this thread before I read my email here at work this morning.
As it was, I first read a 17 page dissertation (by one of the other engineers here in R&D) which examined 32 brands of coffee, determined what the final prepared volume, caffeine levels, etc were for each, and which would provide the most benefit per penny for R&D / Power Engineering break room. It took me 20 minutes to read. A tad on the over-thought side, but entertaining nonetheless. I believe there will be a PowerPoint presentation tomorrow.
That particular engineer has not even started on the Styrofoam cup examination. I cannot wait! :)
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New to ITP, my story attached, have questions 8 years 7 months ago #34100

  • Ann
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I absolutely believe that in cases where the platelet changes (plus or minus) exceed the statistical margins of error and the results are statistically durable (i.e. occur over a long enough period of time to be legitimate)that the results can be compared against changes in diet, lifestyle, environment, etc. for clues to factors that may affect severity.


Trouble is that oft times ITP and other autoimmune disorders 'burn themselves out' over time which makes it very difficult to put an improvement down to anything at all. Maybe that change in diet coincided with a natural improvement. Who knows?

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New to ITP, my story attached, have questions 8 years 7 months ago #34105

  • weirdjack
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You may not believe in genetic predisposition, but keep reading about it. Autoimmune disorders run in families

All of the members in my family have one or more auto-immune disorders. All of my siblings have goofy blood disorders of some type. My twin sister even has a different platelet disorder.
My mother's family tree was 100% auto-immune disorders and 95% Alzheimer (my mother had both).
My father's family all died of some form of cancer...my father being the final one.

Okay, I will admit that they all ate mashed potatoes as well. But I am more inclined to look at genetic predisposition for what led to their illnesses, than to believe that it was the mashed potatoes.
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New to ITP, my story attached, have questions 8 years 7 months ago #34106

  • weirdjack
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Oops.....I thought the great coffee procurement project of 2013 was finalized this morning.....but our 'agency specialist' just wrote everyone to let us know that the 17 page report was invalid. We are back to square one after reading his statement;
"I’m sorry but I did not see the calibration certificates for your measuring device. I‘m afraid your results are invalid. You also failed to create the proper procedure and release it into the system. You will need to follow the guidelines set forth in our company's North American quality assurance manual." (No lie, that is a direct quote)
I need some coffee badly! ... I may just go to Starbuck's instead of waiting for the next engineering study. :ohmy:
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New to ITP, my story attached, have questions 8 years 7 months ago #34110

  • 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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Oh Jack - you just reminded me of something important while talking about the coffee. The CBC analyzers need to be calibrated on a regular basis. If not, they will not be accurate. Sometimes the machine is only as good as the people trained to use it. No matter how good the analyzer is, if not calibrated properly, it will be off.

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New to ITP, my story attached, have questions 8 years 7 months ago #34117

  • DeeDee Marie
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I, too, also believe in genetic disposition on what illnesses we get. But, I also believe that we can do something about part of the puzzle. My mother develop breast cancer at 47, but she also was on many meds at the time and on high doses of estrogen for probably 10 years. She died at the age of 54. My Dad died of aplastic anemia at the age of 50--but he only went to the Veterans all the years for his treatment. He might of lived longer if had some really good specialists. My brother died at the age of 56 from I think it is MDS? (A very bad blood disorder). He again, didn't have any health insurance for quite a few years.

I have made it quite a few years pass all of them, so I consider the ITP not to be that bad; but, I do try to exercise and watch what I eat--to a certain point (I don't completely restrict myself as life is too short not to enjoy yourself a little!). This was all of my family and I am the last one (except for my children).

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New to ITP, my story attached, have questions 8 years 7 months ago #34118

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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Jack, that is so crazy.....hope you can get some coffee!! I would def be headed to Starbucks.

I believe in genetic disposition too. My grandmother had RA, father has celiac spruce, sister has graves disease. I have ITP and hemolytic anemia.

for myself, my ITP came right after I had a bad case of flu. So for me I feel that the flu was a trigger, not a cause.

I have kept track of my platelet counts over the past 8 years, I guess to see if there is any kind of pattern. There isn't! At all! I don't dwell on it though. I try to just live my life the best I can and keep these blood disorders in the background. I have a good hema who I trust, good health insurance, good friends and that all helps. I try to keep a positive attitude, eat healthy foods, get enough sleep, exercise when I can.

I agree with what Sandi said, she has seen so many people here and so many different reactions to ITP.

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New to ITP, my story attached, have questions 8 years 6 months ago #34217

  • weirdjack
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Follow-up on the 'great coffee procurement project of 2013'......
Yesterday, one of my fellow engineers here realized that a 17-page report ("with twenty seven eight-by-ten color glossy photographs with circles and arrows and a paragraph on the back of each one") was not going to wake him up in the morning.
Rather than implement yet another study; he went out, bought a can of coffee, and got on with life. :)
.

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New to ITP, my story attached, have questions 8 years 6 months ago #34305

  • Rockamau
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Hello, I came down with ITP about 8years ago. My first time with symptoms i had a count of 4,000, was put on prednisone(high mg like you), in about 3 weeks my counts where normal and I had just under 2 years before it returned. When it returned I had a zero platlet count, was not hospitalized but put back on steriods very high mg's it took serveral months before my count stabilzed and stayed in a good range. Then returned again alittle over a year. I did not want to go on predinsone again and chose to have my spline removed instead of being on a intravinus drug for the rest of my life. I to new my my platlets where extremely low, i was fatigued and the last time my platlets droped and i was just in for a normal check up and they where at 30,000 my Doctor asked me if I felt ok or was tired. Your count goes very low like mine and i don't think all people with ITP go that low (not sure on all people though).

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New to ITP, my story attached, have questions 8 years 6 months ago #34307

  • KO27
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Rock- Thanks, I appreciate your thoughts.

Weirdjack- I was going to write a not terribly clever or sophisticated allegory in response, but thought it redundant.

:-)

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New to ITP, my story attached, have questions 8 years 6 months ago #34826

  • FANNY
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Maybe the best way to find a solution is from yourself.I had itp two months earlier then you.And fortunatly ,i met with a good doctor.after eating about 9 months' Prednisone under her direction,i get rid of it finally.During this period,i read many books,guiding me the importance of good sleeping,good appetite and good mood.But 6 months later,my platelets get even worse.And this time to get rid of it is not that easy.I realised my bad habits ,and this time 9 months.Now i become mormmal for about 10 months.WISH YOU GOOD LUCK.

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New to ITP, my story attached, have questions 8 years 6 months ago #34828

  • Ann
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So Fanny, you think that our having ITP is our own fault. Unsurprisingly I don't agree!

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