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New to ITP, my story attached, have questions 8 years 6 months ago #34834

  • DeeDee Marie
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I agree with Ann. Fanny, there are a lot of people that have tried eating healthy, doing all the right things and they still have ITP.

It is different for everyone.

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New to ITP, my story attached, have questions 8 years 6 months ago #34876

  • FANNY
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When i was a child,my Platelets' count is too low to have a surgeon.Before i married at about 27,i had a very regular life,my low plt only be talked as a memory .And after that ,my life changed,i had kid,i was lost in novals,i ate spicy fast food and so on.I became very tired ,i became very lazy,i became another person.Then my ITP came,not once but towic .Maybe there's relation's there.It's only my guess.I changed thoroughly when itp came a second time.It's my experience,it's my thoughts.Wish you all good health

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New to ITP, my story attached, have questions 8 years 6 months ago #34923

  • DeeDee Marie
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It doesn't hurt to eat healthy and to try and live a healthy life. But there are some on this forum who live a very healthy life-style and still have low platelets. It is different for each and everyone of us. We all have different reasons for our ITP--just like in all illnesses.

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New to ITP, my story attached, have questions 8 years 6 months ago #34927

  • Vdeutsch85
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At the conference they talked about fatigue.....yes it's a real symptom of ITP....it's not all in my head. However, they said having a healthy diet and exercise could help with that symptom. That in itself seems like its worth a shot to me

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New to ITP, my story attached, have questions 8 years 6 months ago #34928

  • DeeDee Marie
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I agree with you on this--eating healthy. I also got Dr. Fuhrman's book when I was at the conference last year. I have tried to adopt some of his suggestions in his book. Though, sometimes it's not always easy to be really good :)

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New to ITP, my story attached, have questions 8 years 6 months ago #34932

  • Ann
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At the conference they talked about fatigue.....yes it's a real symptom of ITP....it's not all in my head. However, they said having a healthy diet and exercise could help with that symptom. That in itself seems like its worth a shot to me


But really we know that they just made that up! It was only a couple of years ago that they all denied that fatigue played a part at all in ITP and now they are telling us what will cure it. Pah! Just another thing to beat ourselves about for.. not eating and exercising well enough. Sounds like more of the blame game to me.

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New to ITP, my story attached, have questions 8 years 6 months ago #34934

  • FANNY
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STILL remember the second time of itp,I ate vegetabLes,no solid,no oil.I eat grain,beans and all kinds of things that good for my body without thinking of the taste.Then my legs stopped becoming thinner.my face became red.The course of reducing Epinephrine is smooth for a second time.What I means,If you work hard enough,you can grind an iron rod into a needle.

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New to ITP, my story attached, have questions 8 years 6 months ago #34940

  • DeeDee Marie
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I will say that I always have chronic fatigue. And, I don't every drink alchohol, I eat well, I exercise 4 times a week (swim almost a mile and run 3 miles). Sometimes I have to take a nap before I exercise. So, Ann, I believe you are right on that. I just make myself do these things because I know I will look better and my colesteral will be better. But the fatigue is always there. If I had a job, I don't know how I would do it. I really do watch what I eat, but I am not a complete fanatic like some people.

Life is just too short not to enjoy some of the things you like. I have been in remission for 3 years, but I do believe that stress and being overtired brought my platelet collapse last time.

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New to ITP, my story attached, have questions 8 years 6 months ago #34944

  • 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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If you can run three miles, you're doing pretty good! I can barely get up a flight of stairs.

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New to ITP, my story attached, have questions 8 years 6 months ago #34947

  • DeeDee Marie
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Yes, but Sandy you have a good reason! I've been running for about 25 years! So, it does make it a little easier for me to continue. But, I only do the running twice a week now that I am older. For a while I did it 5 days a week.

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New to ITP, my story attached, have questions 8 years 6 months ago #34949

  • FANNY
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A person is a little like plant.It needs air,water,sun,needs peasants' loosen the soil,nutrient and so on.Eat well and exercise is the later,but is not enough,maybe.You need good sleep to repair your body,you need good body to absorb what you eat.you need blood move freely through you.you need good mood to enjoy your life.

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New to ITP, my story attached, have questions 8 years 6 months ago #34960

  • weirdjack
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Please keep the peasants away from my soil.
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New to ITP, my story attached, have questions 8 years 6 months ago #34972

  • Jacchab
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Oh but weirdjack, how on earth will you get your nutrients without loosened soil by the peasants? Is the plant a cactus or a Jacaranda?

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New to ITP, my story attached, have questions 8 years 4 months ago #36471

  • KO27
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Hey Everybody,

I have quite a bit to report since I last posted. If anyone has read this thread since the beginning, three years or so ago, you've seen that I absolutely did not accept that ITP happening to me was a random event, a bad gene, or something that had an otherwise unknowable and unsolvable cause.

This is not a popular opinion as it appears most Hematologists regard the causation similarly to being struck by lightning. Wrong place, wrong time, no rhyme or reason, bad luck. Probably because of this, most ITP sufferers seem to regard their diagnosis similarly- struck by lightning. It just happened.

I cannot say for sure why I never believed this, but I think part of it has to do with the fact that most serious diseases, both autoimmune and not, seem to have a linear arc to a debilitating or even terminal conclusion with little relief available or likely, whereas while ITP, which is sometimes debilitating, fluctuates in severity in most cases, and is one of the few autoimmune issues which responds favorably to treatment. It's different. The truth is that I could have developed that belief solely because I had ITP, but I just don't accept that an individual is helpless.

So, I tried everything. Except a splenectomy. Even went to England for an Indium test to prepare for a splenectomy in the event it became necessary. As much as I vehemently disagree with the philosophy behind the splenectomy I accept that there are times when it's necessary. If you want to read about everything I tried, England, and my thoughts on Splenectomys then read back through the post. I may post a summary once I'm sure this is over, if there's an indication that someone will listen to it, but that won't be for a little while yet.

Moving forward. As much as I felt that the cause of my ITP was knowable, and perhaps even solvable, it wasn't until my second Winter with ITP that I had an objective reason to believe it.
As I've explained in this thread, I observed my platelets rise significantly in the late Fall. This occurred in the same wave fashion and for the same length of time as the previous year.
This pattern meant to me that the proximate cause of my ITP was of variable intensity, and it followed a pattern. To me, that meant an environmental cause. This is one of the more exciting conclusions I had come to in a while, and it also meant that with enough analysis and trial I could likely isolate the cause of my ITP.
The fact that it varied meant that whatever the antagonist was, if I were fully removed from it there is a chance my ITP would resolve. Think about that.

I won't go into gross detail about how I arrived at my central AC unit (again, read the thread), but it wasn't too difficult to isolate what I was exposed to, environmentally, for most of the year but which abated in October. I live in Orlando, FL, so our reality (unlike most of the rest of the country) is that we use AC through September, sparingly in October, and very little in November/Dec/Jan.

It turns out that our AC unit was installed between my last blood test (7 yrs ago) and my diagnosis with ITP (3 yrs ago) when we added on to our house, and it was poorly engineered. It condensated on the outside of the unit and mold grew all over the air handler, inside and out.

We had this repaired/remediated and the first thing that happened was that my platelets stabilized in the 50s, in the absence of treatment. This was a first, and I initially thought I was on my way to having my ITP resolved. I thought I'd done it.
However, once my platelets got to 65K, they stopped and stayed there for six months. This was very frustrating for reasons that are probably obvious.

So I thought some more. One of the things that had been bothering me was that my chest/belly looked sort of 'inflated', as though someone added a few extra PSI to me with a bike pump. I thought this was odd, but it had also been present for a few years. It slowly dawned on me that this 'puffy' appearance wasn't fat (I'm 5'7", 155 lbs) but was an inflammation of sorts.
I'd heard of people who had Gluten allergies, and at first I thought it was a problem only experienced by hypochondriacs. I always thought Chris Rock's joke that 'no one in Rwanda is lactose intolerant' was as telling as it was funny.

I was tested for Celiac as a matter of course during my diagnosis, several times by several different methods, and the test returned negative every time. However, in the process of a standard food allergy panel I was having done at an allergist, it was noted that I had a wheat allergy of undetermined severity. I thought that was interesting and by happenstance I wound up listening to the author of a book called 'Wheat Belly' on NPR. He explained, in great detail, how it is very difficult for some people to process modern strains of wheat and that as a result these people develop a 'puffiness' or a 'Wheat Belly'. He also said that the belly is by no means the only symptom, and that modern wheat strains can create all kinds of hell for people who are intolerant or allergic to them. This gave me pause.

After reading much of the book and doing more research, I gave up bread at the beginning of the 2013 Summer. This wasn't easy at first because most everything I ate for the last 30 years came on a substrate of bread. It took some time to assess alternatives, and included a lot of free range chicken. And Fruits and vegetables, which were never the first thing I put on my plate.

I also revisited my HVAC after plateauing at 65K platelets. In addition to all of the work we'd previously done, I finally just blocked the AC vent above our bed, under the theory that rather than blowing straight from the vent into my nose, potential allergens would have to defy gravity for about 16 feet to get to me from the other vent in our bedroom. I don't know the science on this, at all, but I figured that if an allergen had to have a 2/1 glide ratio to get to me, I might just ingest fewer of them than from freefall above my head.

As I continued to avoid bread, I noticed a few things happened. I lost about 5 pounds. Probably predictable, but on my relatively slight frame it was noticeable to me. Also, the puffiness started to recede a bit. This was noticeable to others, which I thought was surprising as it occurred a bit later. The weight had come off almost immediately, but the puffiness took longer and was what other people seemed to notice more.

The next thing that happened was a blood test. As I explained, I'd been within a few K of 65K platelets for five or six months.
This time when I received my report card from my Hema it showed I had 72K platelets. Yes, I know from our recent discussion that this is 'within the margin of error, etc.' so I didn't get too excited as I'd had plenty of hopes dashed previously.
However, it's worth noting that in the three years since my diagnosis I'd only achieved platelet counts that high (in the absence of treatment) once or twice and only in November or December. This was AUGUST. Historically one of my worst months; the month I was diagnosed in because I'd about collapsed three years ago.

By late August my body, my torso really, looked different. I don't think I appreciated just how bloated or puffy I had been, but now my body looked almost in shape despite the fact that I go to the gym as often as I go to church, which is never.

At my most recent visit, my platelet count, again in the absence of treatment, came back at 90K. Color everyone surprised. My highest count since diagnosis was 91, in England in November 2011 (on a different machine), so this was extraordinary news.
Three years in, no treatment, and my ITP has the appearance of potentially clearing. I'm realistic and experienced enough to understand this could be another red herring, but this isn't a 'normal' ITP fluctuation; over the last 8 months my platelets rose, plateaued, and have continued to rise through what has historically been a bad part of the year for me. My platelets in fact, have ONLY gone up when they moved. For eight months.
Yes, there are people that are going to talk about the accuracy of the CBC machines and normal fluctuations. However, I think that if a statistical analysis were performed on this data, and machine variability levels were accounted for, a graph of my progress wouldn't change much. This is because the same machine was used in every measurement, which eliminates a lot of the variability, and a +/- of 5% of 90 is still greater than a +/- 5% of 72, etc.

What am I trying to express by authoring this? I have an absolute belief that ITP, in my instance, has occurred through an allergic response to my environment.

I also believe that I was able to narrow the cause down to either allergens from my HVAC system, a wheat/gluten allergy, or both. Interestingly, it may not have even been a direct allergy the way we think of them; for example getting stung by a bee and having anaphylaxia ensue. My ITP could have been triggered by the puffiness, which as you may have guessed was a form of systemic inflammation brought on by my wheat allergy. My ITP might have been caused by a SYMPTOM of another allergy.
I have taken air quality samples and sent them to a lab for analysis to see if any particular allergen/mold/etc can be isolated in our previous air supply, and I am also trying to have a more specific test done on my wheat allergy to see if this can be further isolated to identify a cause. However, as I've said, my ITP might even be a reaction simply to inflammation; to a SYMPTOM of an altogether separate allergy.



The more I've read about inflammation and it's effect on the body, the more disturbing I've found it. I have no expertise on the subject so I'll let you do your own research, but its pretty astonishing.

So do I think I've 'solved' my ITP? Maybe. We'll see how things go over the next year, and I will report regularly.
Why am I publishing my suspicions with an admittedly incomplete conclusion? I am doing this first because I believe that there is enough statistical data to suggest I'm onto something, even if the end result is not yet clear.
The other reason I'm writing is because I don't think I could possibly be the only person who has ITP for the reasons I suspect I do. I have no expectation that, even if I'm right about the cause of my own ITP, that this will solve it for everyone else. However, it might help somebody find a clue to theirs, and I'd rather put my data out there sooner rather than later.

I know popular opinion is that the cause of ITP isn't knowable, and that without a splenectomy it isn't curable. And maybe not even then.

I don't accept this, and going to back to my very first post, I never have. I think I may have found something, but only time will tell if I'm right. In the meantime I encourage everyone to not give up hope, not resign themselves to their fate, stay positive, and stay curious.

Thanks,

KO

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New to ITP, my story attached, have questions 8 years 4 months ago #36475

  • Sandi
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KO:

For the first time, I'm not going to disagree with you. In the past year, I have heard many credible health success stories due to gluten elimination. Not just ITP, but many autoimmune illnesses, including my own. I eliminated gluten and felt much better. I started eating it again and felt worse. My daughter also recently eliminated gluten, dairy and night shades and is feeling much better (she has autoimmune issues also).

There is too much evidence out there to ignore that. So we have taken to eating vicariously through others.

I'm glad things are going better for you.

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New to ITP, my story attached, have questions 8 years 4 months ago #36478

  • DeeDee Marie
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KO,

I wouldn't disagree with you either. You are talking about "mold" which we do know can cause problems for anyone. Coming from the air conditioner, it very well could be a problem. And, like Sandy, I do agree with the gluten-free diet (it's just that it is hard to always stick to!). You do have to be very dedicated to stay with it. It sounds like you are making very good progress.

Good luck to you!

Dee Dee

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New to ITP, my story attached, have questions 8 years 4 months ago #36488

  • FANNY
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Last months,my platelet count reached 237,never recorded that high before.In fact as i had thought 100 lower than that.Becouse I had work pressure.I had bubble in the mouth,I wake up at 3.30 pm and could not fell to sleep any more ,my back was running with sweat after a little work . Even my leg had a very big bruise ,i got tired very easliy.I was scared,i knew all this maybe becouse I started to read novel again.Maybe becouse I had to take my daughter to school,and I had not that time and she wouldn't get up earlier......One day,I saw several people Playing Taijiquan,I followed them,as if I was grasping at life-saving straws,I played about 20 minutes very carefuly with every details every day for about 11 days,now the above bad mood all disappeard .Recently I even became my daughter's best listener,she talked with me during the road,I become fond of her very much.I even enjoy my work.Thank god.

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New to ITP, my story attached, have questions 8 years 4 months ago #36491

  • norita
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KO, that's interesting what you say about allergens etc and inflammatory response to environment.

One thing I've often noticed when my platelets plummet is, in addition to fatigue and some dizziness, a bit of sneezing and 'general nostril irritability', and the beginnings of a sore throat. It's like a cold is coming on, and I've wondered if that's the cause of the dizziness sometimes (as a head cold can do that). I've also wondered if it's a real cold, which is causing the platelets to plummet. But I'm not so sure..

Since starting Romiplostim (Nplate) my counts can go from 140 > 2 in a couple of days, and can bounce up again in almost the same time, and these symptoms come and go with the counts. It really feels like it's the platelet count that is leading these symptoms, or at least directly co-occurring with them. It's odd because if there is an underlying allergen intolerance causing the sneezing, dizziness and low counts, then you'd expect the other symptoms to remain even when the counts are artificially pumped up with Romiplostim, but that's not the case. I can't quite explain it, but having the very definite and sudden rises and falls, and being able to monitor symptoms regularly changing, without the immuno-suppressive effects of steroids for once, has meant I can see definite patterns, and there is definitely something connecting these things. A count above 20 and I don't get the other symptoms. While I was on steroids it could have just been a result of generalised immuno-suppression, but on Romiplostim alone, that can't be the reason. So while I take your point about there being an underlying cause, and an allergy to something in the environment/diet is a big contender, it doesn't really explain the patterns I see. Then again, they're also beginning to realise that platelets themselves do more than just stop bleeding - there's a lot of speculation about their role in the transportation of serotonin, but also I've read/heard said that platelets may themselves have immunological functions. The hemos at my hospital (which is a major research hospital) are interested in this and would, if they had the time, like to know more.. But my main point here is that treating the platelet count could be more than just treating the symptoms - low platelets might not be just the result of an immunological problem, but also cause or exacerbate one.

Incidentally, the doctors are always astounded at how rapidly my platelets can fall, but now I've had the indium screening test that no longer surprises me. They told me my liver and spleen are incredibly efficient in munching up all those platelets very rapidly. They screen over 3 days, but by the 2nd day there was very little indium to detect because the labelled platelets had all been sequestrated by then.

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New to ITP, my story attached, have questions 8 years 4 months ago #36510

  • CindyAnn
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OK - so this is a Chicken before the Egg or visa/versa

I have always had allergies - lot's of them (tested a couple times 20 years apart and I react to all but a couple of the environmental triggers - mold is the worst one for me) Deep in the back of my mind I feel that the ITP was triggered by the allergies. Could my ITP be because of my allergies to soooooo many things? And, because I am allergic to sooooooo many things could it be that my immune system has been overwhelmed for so long that is just is always in overdrive? These are thoughts that I have had for quite some time.

I have not been tested for food allergies, however when attempting to go "gluten free" I notice much less swelling in my hands and I sleep much better. I believe that "man's" improvements to wheat crops could may well have made wheat not so good for man anymore :unsure: Going gluten free is hard because so many of todays modern diet included processed foods, but it sure has a positive effect on the days I do!

Any way - just to give some thought for fodder - I am sure I am not the only one with ITP and severe allergies :( coincidence ? hmmmmm

Cindy Ann

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New to ITP, my story attached, have questions 8 years 4 months ago #36535

  • Sandi
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A lot of us have allergies. Mine started as a little kid with eczema. I've been allergy tested but there were so many things and I couldn't avoid them so I just didn't bother trying. Every single time I eat, I get instantly stuffy. I've mentioned that to a few doctors and they just stare at me, so I gave up trying to figure that one out.

I think that since allergies are autoimmune, people with allergies are just more prone to additional autoimmune issues. 2/3 of my kids have had eczema. One of those kids has Graves Disease. I keep hoping that the other one will never have any more autoimmune issues because it is such a struggle. You just can't fix it and you spend your life trying.

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New to ITP, my story attached, have questions 8 years 4 months ago #36552

  • DeeDee Marie
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Since you have been tested for your allergies, I would try to stay away from the really bad things that cause your allergies. My son grew up with severe asthma and had to stay away from certain triggers--both food and in the environment. He did have the allergy injections to help him cope.

Just my thoughts!

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New to ITP, my story attached, have questions 8 years 4 months ago #36556

  • KO27
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I think some of the clues that would suggest an allergic response are the fact that ITP isn't known to be contracted in the way most other diseases, both autoimmune and not, are. This is to say that it's not spread by blood or other bodily fluids, it's not otherwise communicable/contagious, it's not known to be hereditary, and it isn't linked to poor or dangerous dietary, addictive, or social habits.

For sure there are many diseases that also fit the above description, but ITP is sort of unique in it's variable intensity of symptoms (instead of a linear progression downward) and the fact that it doesn't usually have a gravely debilitating or terminal conclusion. People die with ITP, but rarely because of it.

Also, unlike most diseases that target a gender, a race, an age group, etc., ITP with the exception of being weighted towards females, is an equal opportunity disease. It doesn't care what shape you are in or what other physical problems you have or don't have.
To my thinking, all of these facets mean that the cause of ITP would almost have to be exposure driven (environmental) to affect people in such a general sense and without being contagious or having established risk factors or demographics.

I was fortunate in my case that a pattern revealed itself with my platelet counts over consecutive years. In most cases I've read about there isn't an apparent rhyme or reason for platelet counts that rise and fall, but once a clear pattern emerged with mine it pretty much took my breath away. A pattern requires a reason, and a reason means a solution is possible.

Above I stated there isn't an 'apparent' reason for most people's platelet variability, but that doesn't mean one doesn't exist, only that we don't see it. Some patterns are simply much harder to observe than others, particularly when you're not looking for them.
I'm going to go out on a limb and say that my case is probably not unique, though I doubt my circumstances are analogous to even 20% of ITP sufferers; I think there are other people who have ITP for reason(s) similar to mine, but not most.
I say this because in many cases ITP is secondary or tertiary to other problems, and in many cases ITP is a portent of problems to come but which haven't yet made themselves evident.
Three years on I don't believe I fit this description; prior to ITP I had no health problems whatsoever (excepting an HCV misdiagnosis, which is a problem but not a medical one) and now that I've been free of ITP 'treatments' my bloodwork is similarly perfect in every regard except for platelet count.
So, I'm going to call my situation 'Random', and I suggest that there are plenty of other, otherwise healthy, people that got a hell of a surprise diagnosis with ITP. I think that would be a baseline from which one could look for patterns of environmental exposure. If you have Lupus, Crohn's, etc., it's not to say that a pattern doesn't exist but it may be less likely and it also may just be mathematically improbable to determine if it does exist.

Also, the fact that I'm male is also significant as 2/3 of ITP sufferers (at last reading) are female. This places me in the minority, statistically, which helps a little when working out probabilities.

So what am I saying? I'm saying that if you were (prior to ITP) and are now a 'Random'; an otherwise healthy to very healthy person (normal weight), that it might be worthwhile to look for patterns your platelet counts IF you have enough data points (at least monthly CBCs) AND you have data over a long enough period of time (2+ years). If you see a legitimate pattern, i.e. high counts in Winter, low in Summer, etc., then you have to try to correlate it to what you were and weren't environmentally exposed and not exposed to at those times. This could mean food, HVAC, occupational hazards, time spent in a specific building at work part of the year, anything really. Being male helps here a bit in narrowing this down as ITP appears harder for males to contract and therefore the cause would seem to have to be more definite or discrete, and therefore theoretically easier to isolate.

There are, as some others have correctly pointed out, variations in platelet counts, especially by different machines. One of the ways you can limit this is by trying to use data sets produced by a single lab. This will help the accuracy of your analysis. I do think that even though there is a slight margin of error that from data obtained even by the same lab/machine that the data will be perfectly valid because you're not looking for swings of 5K or even 10K platelets. In order to be legitimate you're really looking for sustained swings of greater than 20K and perhaps even greater than 30K. It probably goes without saying, but for this to be of any use it absolutely must be in the absence of any ITP medication or residual effects from same. The only potential exception would be if you were, say, consistently on the exact same dosage of Prednisone, etc. for the entire duration of your data sample, and even then I'm not qualified to speak about how consistent or not those counts may be.

So I'm talking specifically to 'Randoms'- people who were otherwise healthy before and with ITP, who have subnormal platelet counts but require no medication to maintain their levels, and especially males. It would be interesting to see how many people that actually covers.

I do know this; for people who are in a situation analogous to mine (as stated above) I think the answer, the cause, may be knowable. It might be possible. I'm not trying to give anyone false hope, and I can't speak for anyone who has a situation fundamentally different than mine. I think I am fortunate that my instance of ITP has the least variables that I've observed (healthy, stable without meds, male) and therefore it seems to be the easiest to analyze.

Please let me know if you think you find anything.

Best Wishes to all, and I will continue to update.

KO

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New to ITP, my story attached, have questions 8 years 4 months ago #36561

  • 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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I think some of the clues that would suggest an allergic response are the fact that ITP isn't known to be contracted in the way most other diseases, both autoimmune and not, are. This is to say that it's not spread by blood or other bodily fluids, it's not otherwise communicable/contagious, it's not known to be hereditary, and it isn't linked to poor or dangerous dietary, addictive, or social habits.


I do tend to disagree about this, and I do think ITP should be in the exact same category as other autoimmune illnesses. The reason is that it tends to go along with other autoimmune disorders such as Graves, Hshimoto's, Lupus, MS, Autoimmune Hemolytic Anemia, etc. The fact that it is an up and down thing doesn't matter; the antibodies are affected by treatments and environmental factors. Very few autoimmune disorders are fatal and while they can be progressive and debilitating, that is because they attack bodily tissues and organs such as the heart, the nerves, the lungs, the joints, the brain, the myelin sheath, etc., whereas ITP only affects platelets. Autoimmune Hemolytic Anemia is similar to ITP in that it affects red cells and it is, in fact, an autoimmune disorder. Most autoimmune disorders are confirmed with autoantibodies and ITP is one of them. Some people do not present with detectable antibodies and there are some theories behind that.

Many people with ITP have a family history of autoimmune disorders. While ITP may not run in families (except for familial ITP), the propensity to develop an autoimmune disorder becomes elevated.

All autoimmune disorders can be considered a type of allergy in a sense because they all involve loss of tolerance to 'self'. Allergies and autoimmune disorders are sometimes treated with the same basics - steroids. Many people here started off with allergies and developed ITP later in life.

Your theory about things that trigger ITP such as gluten intolerance makes sense, because if you are removing something that your body cannot tolerate that has been creating an inappropriate immune response, you may regulate that response. Compare that to a person who is severely allergic to peanuts. If you avoid peanuts, that allergic response doesn't exist. Of course ITP is a little different in that it's difficult to correlate with an exact sensitivity, but you're also talking about something that is a bit more involved and doesn't have an immediate, obvious reaction. It's been reported that soy can trigger Graves Disease, but not eating it does not improve the course of the disorder, so all disorders can be different.

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New to ITP, my story attached, have questions 8 years 4 months ago #36562

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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If I stayed away from all that I am allergic to I would have to live in a bubble :) - I really am allergic to all but a couple of things and the testing never got past 10 min because I reacted so fast :(

I do avoid what I can, but when your allergic to grasses, trees, dust, mold, fungus, most animal dander and the list goes on you just do what you can to live with it - I have taken so many medications that end up not working after a period of time.

For now, I am trying to steer clear of all medications and see where I end up

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New to ITP, my story attached, have questions 8 years 4 months ago #36590

  • weirdjack
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In order to be legitimate you're really looking for sustained swings of greater than 20K and perhaps even greater than 30K. It probably goes without saying, but for this to be of any use it absolutely must be in the absence of any ITP medication or residual effects from same.

Ah well........
Tracking the past 11 years, I've seen no pattern emerge. Unless you count Dex hallucinations.
A 20k swing? I don't even have 20k to swing from.
The absence of medication? I'd be at zero all of the time.
If I could maintain my current level of 12k-19k without meds, I wouldn't even think about ITP.

.

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New to ITP, my story attached, have questions 8 years 4 months ago #36603

  • KO27
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Jack,

I prefaced that by saying that I doubt if even 20% of ITP sufferers have cases that are analogous to mine, and yours obviously isn't one of them.
I'm sorry your instance of ITP is as serious as it is; I've been that low (at my diagnosis, three years ago, for example), and if you've read this thread you know my platelets were low enough that I tried WinRho and it almost killed me. I've been there, though in fairness, not for 11 years at that level. I have empathy for your situation, if not the duration of your experience.
Assuming I have the barest beginning of an answer in my case, I have nothing to offer on yours.
I wish you well Jack.

KO

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New to ITP, my story attached, have questions 8 years 4 months ago #36613

  • DeeDee Marie
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Jack,

When I was at the conference in 2012, I met another person like you (he was older than you, though). His platelets were always around 10k or a little under 10K--5 to 10K. Sometimes this happens to some of us for no rime or reason. I've heard of a lot of people who stay at 5k or under; even with meds. But, you did do well on Promacta?

I think a lot of us have the potential to drop back down. We just never know.

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New to ITP, my story attached, have questions 8 years 4 months ago #36704

  • luca
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KO: I like the way you think, and your analysis makes perfect sense. When I was first diagnosed 3 years ago, I also went on a search for possible links, both personally and on this and other websites. My favorite allergy-induced Itp story comes from a family in Naples, Italy who assert that they were able to link their son's platelet crashes to his eating of sausage (if you are Italian like me you know that sausage is a big deal in many Italian dishes, ranging from pastas and pizzas to soups and meat platters)! Anyway, I've tried what many other new ITP'ers probably do; I've given up at various times alcohol,sugar, artificial sweeteners, and meats to see if my count was affected (this was before I had to begin treatments). No luck yet. Unlike you, I haven't found any pattern yet; my numbers just declined slowly over a two year period; from the 30's to the 20's to the high teens and then to the low teens, with no rebounds in between (except when I took Dex pulses). When they got to the low teens, bruising started and my Hemo insisted we do something. BUT, I too am not convinced that there isn't some element out there that is contributing to my body's increase autoimmune response; I would love to find it. No, I haven't tried the gluten free route so I suppose I need to give that some thought (but like you I eat bread much of the time, and I do not have a "wheat belly").However, before a hundred people write me with their suggested dietary restrictions, I think--as you demonstrated--we all need to find some clue in our personal histories that will put us on a reasonable search path, and not just pick something out of the air because "someone online went into remission after drinking their own urine...!"

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New to ITP, my story attached, have questions 8 years 1 week ago #39348

  • luca
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Weirdjack: I know you have had insurance problems; have you applied for Obamacare to see what the costs would be in your case? I'd be very interested in your experience to date with the changes in insurance rules...

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New to ITP, my story attached, have questions 7 years 8 months ago #41071

  • KO27
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Hey everybody,

I hope you've all been well. I told myself at the beginning of this odyssey that I wouldn't be one of those people that went into remission and flaked on the forum, so I've been wanting to visit again for a while.

My ITP continues to improve. My platelets have remained at about 85K now through the Winter (such as it is) and into deep Spring here in Florida.

Recently I had what was supposed to be a small surgical turn into a moderate one, and it had an interesting effect on my platelets.

I had felt a lump in my lower back for some time; it was just under the skin and could move within a small range. I had an MRI done and was told that it was a Lipoma (discrete fatty tissue growth) which I could have removed if it bothered me, but that it wasn't necessary.
The father of a friend of mine died when I was about 8 y/o from complications with an elective surgery so particularly when my ITP was new, I consciously avoided elective procedures.

However, as my ITP symptoms started to recede and I started to work out more and the Lipoma became more of an issue. With my platelets at 85K and no bleeding symptoms I made the decision to have it removed. The surgical preparation was more in-depth than I anticipated- the anesthesia was a deep sleep and not the twighlight dose that one receives with, say, a colonoscopy, and to my surprise they intubated me because the operation was performed while I was laying on my stomach.

The procedure went well but when I woke up the doctors told me they removed two Lipomas, one on each side of my spine, and the one on the left turned out to be unexpectedly large; they said it was the size of a fist!

I've since gotten the biopsy results back and they were benign, as predicted, but it was still quite a surprise, and I'm still feeling it three weeks later.

The really interesting part is that I had a Hema appointment at about one week post-Op and the my platelets spiked to 121K!

My Hema said that this increase could be partially, but not entirely, explained because the body does create additional platelets in response to the inflammation (which I certainly had) typically present after an operation.

My next appointment isn't until early June as I'm now on 2-month intervals but it will be interesting to see where I'm at then.

I don't have any other news to report, but I do want to state that while nobody who goes into remission can know 100% for sure why it happened, I believe my remission was (with a very high probability) triggered by the actions I took as a result of the causal analysis I detailed on these pages.

After dealing with, researching and treating ITP for four years, here is what I believe:

1. My ITP, and many other ITP cases (perhaps the majority), are a result of environmental factors and are not predetermined by ones genes.
2. That in many cases it is possible to discover this cause.
3. That when the cause, the allergen, the antagonist, etc. is removed, that in many cases, including mine, ITP will go into remission.
4. That the treatments for ITP are really primitive and the cause nearly as much harm as ITP, including the clear risk of death in some cases.
5. That though primitive, they are obviously sometimes necessary, but one should do a great deal of research before accepting any therapy and should under no circumstances accept their doctor's word in the absence of their own research.
6. That doctors, in general, have no intellectual curiosity about the cause of ITP and are normally satisfied to prescribe the above therapies.
7. That a splenectomy should be an absolutely last choice once all other alternatives have failed. Remember, in choosing a splenectomy you are removing an organ that has nothing wrong with it, and is performing perfectly as it was designed to do.
8. That no-one should have a splenectomy, under any circumstances, unless they have had the Indium test done. There is no logical argument that can be made against this.
9. That you absolutely must be your own medical advocate. If you don't, you will be treated like sheep. Only when you speak up for yourself do you discover all of your choices, and only then do you get respect from a physician.


I thank everybody for reading, and I am enormously grateful for the ITP forum as I've learned more than I could ever give back.

I will keep checking in as frequently as I can, and I wish you all well.

KO

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