Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me

TOPIC:

New to ITP, my story attached, have questions 9 years 4 months ago #27942

  • KO27
  • Offline
  • Posts: 91
  • Thank you received: 6
I'm going to continue with my update in an effort to get to the present day.

After discovering that my Reticulocytes had normalized (wife and I celebrated; sometimes it's the little things), the next bugaboo were my immunoglobulins.

It's been interesting to note that my general (cbc) bloodwork has been slowly normalizing for the past year. Once the Prednisone was out of my system I noticed that the number of blood components 'out of range' began to decrease, almost by the visit until a few months ago when the my bloodwork was perfect with the exception of my platelet count.

This, interestingly, is what my bloodwork looked like when I was diagnosed two years ago. This fact has made me think quite a bit about what the various and sundry ITP treatments I've undergone have done to me.
I've been treatment free for quite some time now and my cbc bloodwork has only just now normalized, so basically what I can deduce from this is that the treatments, and not the ITP itself, had altered my blood chemistry for the better part of two years.
That's frightening to me as I'm an absolute believer in the butterfly effect, and I cannot help but wonder what else my 'treatments' have wrought.
Obviously I have to give credit to Rituxin for currently being treatment free, so it's a bit of a Catch-22 and I don't mean to sound overly cynical about it, but it's definitely moved the needle for me in the treatment vs splenectomy decision.

Coming full circle now, I recently had my immunoglobulins checked again and they were all very normal except for one that was within 2 points, so close enough.
Human bodies are indeed resilient and it appears mine has taken the abuse from the disease and the 'cure' and found a balance, albeit it a less than perfect one.

So I'm now eyeing a splenectomy, though I'm still hoping to avoid it.

I've tried all of the common and not-so-common treatments with the exception of n-plate/promacta and I've decided I owe it to myself to try some longshots before committing to have a healthy organ removed for the greater good.

With that in mind, I'm again visiting a Chinese doctor, though this one comes extremely highly recommended and I'm brewing my own teas from the bags of mad looking ingredients (eye of newt, scale of lizard, root of snozberry sort of thing).

Also, I started sleeping in a separate room in the original part of the our house. About six years ago we added on to our house, but I've always suspected the HVAC system installed in the new section was poorly engineered. Lot of exterior condensation, and in fact the original breaker on the air handler actually rotted apart at 3 yrs.
We recently had it inspected by an HVAC company that does work for me elsewhere, and, yes, it's improperly engineered, and yes, mold is rampant inside the unit (above the coil, where the wiring resides).
We live in Florida, so as with alligators, mold isn't as unexpected as it is elsewhere. Probably a lot of people have mold in their HVAC units, but we are going to have the system evaluated further.

I'd hesitated to bring this up before actually discovering mold, but we have a supply vent directly over our bed (now blocked) that would blow on our faces all night (my wife should have married Mr. Freeze) and I couldn't help but feel as though this wasn't good for us.
Here's what's particularly interesting to me though; prior to being diagnosed two years ago, I (uncharacteristically) hadn't had a physical for three years.
We added on to our house about five years ago. In my search to corroborate possible environmental changes with the appearance of my ITP, this stands out.
Yeah, I know, I'm probably reading tea leaves, but still, it has piqued my curiosity. Anybody else have or suspect HVAC (air conditioning)issues?

It's been about a week and a half that I've been sleeping in the other room (which utilizes a separate AC system), and of course I've been drinking the new Chinese herbal teas for about three weeks, and... my platelets have jumped to 48K after being in the mid 30s for three months or more.

Obviously this could be a coincidence, and it is only one test so we'll have to see where this goes, but I was surprised to see 35% improvement right after changing a few things.

Last, or nearly so, I'm going to really try to work out hard (P90x)for 30+ days out to see if it makes a difference. I'm unconvinced that it will, and honestly I have my doubts that I'll be able to do it because of the way I feel, but I'm going to give myself the best opportunity to succeed by going to be early, eating right, etc.

Right now I'm wondering what that must sound like; Chinese medicine, blame the air conditioner, etc., but some of you might remember that I started off being committed to doing everything possible to avoid a splenectomy, and from my perspective I've tried every treatment that offered a reasonable chance of success, done a 30 day juice fast (yeah, saw the movie), and while the high probability treatments haven't offered enough (again, I'm grateful for being treatment free)to allow me to fully enjoy life on my own terms, I feel it's logical to pursue sensible long shots before going under the knife.

I'm also considering a second dose of Rituxin to see if I can boost the long term efficacy to a level I can live with, though the thought of more colds isn't pleasant.

I have certainly changed my perspective on having a splenectomy. I think experience always makes one less strident, and I'm no exception. It's comforting to know it's available and that I can almost guarantee I'll be done with all this at my request, but there's still a significant cost, as Sandi eloquently points out.

So I'll wait a bit. Try a few crazy things, see what happens. I have had a feeling for some time now that a splenectomy is more or less unavoidable at some point, and that while I can delay it, the odds are I'll have one before this is all over.

We'll see.

Thanks for reading, and I'll try to post more frequently.

Also, I think I'll start a separate subject Topic regarding the Indium test as I'm now a bit of an evangelist for it, and it's value for anyone considering splenectomy, so look for that in the near future.

Best Regards,

KO

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 4 months ago #27958

  • Nitin
  • Offline
  • Posts: 38
  • Thank you received: 11
Well, an interesting read I must say. Cant blame you being so 'philosophical' in your approach to treatments for ITP. I was emotionally in very bad shape when diagnosed with ITP. But over the time have come to terms with it. AT present I am taking Rituxan treatment and hoping to avoid Splenectomy. I too yer for normal counts. But even spleen removal is not a "cure" for ITP. Splenectomy is also a symptomatic treatment. Best of luck KO27
-Nitin

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 4 months ago #27962

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Sometimes we do what we want and then try and make it look like the logical step in retrospect.<g> I'm sure I do that all the time.

I think splenectomy has to be the worst option of all those given to us as it leaves us predisposed to clotting and the spleen also assists by storing monocytes for release in case of heart attack or some other catastrophe. My blood always has nil monocytes so they must all be hiding out in the spleen so remove my spleen and I presume I'd have none. And I know how bad I'd be at rushing to the doctors at the first sign of illness as you must with no spleen. So frankly, I'm surprised when people opt for it.
The following user(s) said Thank You: kym

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 4 months ago #27964

  • Tyler99
  • Offline
  • Posts: 10
  • Thank you received: 2
Hi Ann,

I've been going through this thread and find that there are people in both camps - those for and those against splenectomy. If I understand this correctly, you'd not advise splenectomy if the spleen is of normal size.
- What is your opinion about splenectomy if the spleen is enlarged?
- Wouldn't that be a strong case for it?
- Have you encountered any case where the ITP'er had an enlarged spleen and refused splenectomy, and got better or made his condition manageable by other treatments?

I'd like to know the opinion of other members as well - Sandi, Dean et al.
Just interested in opinions here, not looking for a flame-war. :)

Thanks,
Tyler
Now faith is the substance of things hoped for, the evidence of things not seen. - Hebrews 11:1

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 4 months ago #27965

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
Tyler:

If you read the literature, the spleen should not be enlarged when one has ITP. Some articles suggest that if it is enlarged, there may be another health issue going on. However, some people with ITP have had an enlarged spleen and either had no other condition or didn't look for one. In that case, I'd want to know how enlarged it was and whether or not it was at risk for rupture. If the answer was yes, I'd probably get it removed. If the answer was no, I wouldn't.

People get their spleens removed hoping to fix ITP and sometimes it does. Sometimes they live out a normal life with no additional problems. But sometimes, there can be problems and you have to look at the big picture. A percentage of people end up diagnosed with another autoimmune disorder, or cancer, and have to use immunosuppressants or chemo. The spleen would be pretty handy to have then. (Having ITP does not raise the risk of cancer). These are things that people don't think of when trying to focus on ITP.

Or as Ann said:

I think splenectomy has to be the worst option of all those given to us as it leaves us predisposed to clotting and the spleen also assists by storing monocytes for release in case of heart attack or some other catastrophe. My blood always has nil monocytes so they must all be hiding out in the spleen so remove my spleen and I presume I'd have none. And I know how bad I'd be at rushing to the doctors at the first sign of illness as you must with no spleen. So frankly, I'm surprised when people opt for it.

There are articles to support that. (No articles about Ann's low monocytes though, I'm afraid).

A few people have ended up having APS antibodies or Factor V Leiden which are clotting disorders and having the splenectomy ended up causing clots.

Of course, there is sepsis. I read a horror story that one man posted a few years ago. He survived, but not without damage. I can never stress enough how important it is to get to the hospital with a fever, even if you think you will be okay or might be over-reacting.

Then there is the fact that it doesn't always work. Is it worth it for a year? Two years? Ten? Sometimes long spontaneous remissions do occur when you least expect it; I've seen it happen. There is no curse that says that ITP must last a lifetime once one has it.

But, you have to go with your gut. You have to do what YOU are comfortable with. It can be the best shot at being treatment free for some individuals. Just be informed and make a knowledgeable decision.
The following user(s) said Thank You: Tyler99, kym

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 4 months ago #27967

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
What actually does happen is that the monocyte count goes slightly up in the blood as they have lost their storage slot but they are still in short supply. Monocytes kill off or cause to die, bacteria marked by antibodies for destruction. When the monocytes can't keep up killing off the bacteria, because there aren't enough of them, body gets overwhelmed with infection. Monocytes also go to the site of damage after heart attack or damage such as in a road traffic accident, and assist with wound healing.
The following user(s) said Thank You: Tyler99

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 3 months ago #28061

  • KO27
  • Offline
  • Posts: 91
  • Thank you received: 6
Little Update- Test today was 52K platelets, up from 48 last week and 35 for three months previous. Feeling much, much more energetic.

The three possibilities for this increase are:

1. Completely totally random

2. Chinese herbal medicine therapy

3. Sleeping in the old part of the house without the 'contaminated' AC unit.

Of course, a random unexplainable occurrence is the most likely as I'm not arrogant enough to suppose that I've begun to solve the cause or discovered a new treatment for ITP. However, I still think it's pretty damn interesting that this is happening in concurrence with me trying a few new things, so you never know.

Peace,

KO

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 3 months ago #28063

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
KO:

My thought: Normal platelet fluctuation. You could go tomorrow and get a 49, the next day, a 53. It just happened to be caught going in the right direction. I do hope though that it will continue.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 3 months ago #28067

  • KO27
  • Offline
  • Posts: 91
  • Thank you received: 6
Sandi- Yes, I understand the probability, BUT I will say that my platelets really seem to trend. It will bear itself out over the next weeks or months and I'll get a better handle on where my count is going (if anywhere), but certainly something rustled it out of the low homeostasis I was in for months.

I've been pretty methodical about this so far and I'm not about to make any claims. It's just interesting to see what happens next, as always. A bit like a thriller my body is authoring on it's own.

Talk Soon,

KO

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 2 months ago #29313

  • KO27
  • Offline
  • Posts: 91
  • Thank you received: 6
Quick question-

Anybody have experience with Plasmapheresis or Protein A Column Therapy?

Thanks,

KO

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 2 months ago #29316

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
It's not a valid ITP treatment. It doesn't work. It can remove the antibodies, but they come right back. It's about as useful as a platelet transfusion. There were a few people here who tried it about 14 years ago, but the result didn't last. You'd be hard pressed to even find a doctor willing to try it. It hasn't been mentioned here in many years.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 2 months ago #29318

  • John
  • Offline
  • Posts: 148
  • Thank you received: 32
KO,

I've linked excess chlorine exposure (from swim pools) as an ITP trigger. I'm not talking about a one-off experience. I'm talking about mulitiple occasions over two decades. It took a long time to figure out that I was allergic to chlorine, a very strong oxidant. In my ITP history, I would be in a summer swim campaign and then suddenly out of the blue develop ITP symptoms. On one occasion I started swimming for several weeks in the winter in a public swim pool. Once my ITP symptoms appeared, I would stop swimming of course. And with 3-4 weeks of prednisone and I was good again.

There are other allergies that I have to deal with, some obvious, and some very subtle. Gluten intolerance is an example of the latter.

www.pdsa.org/forum/8-natural-treatment-methods/26927-allergies-that-cause-itp.html

Here's a recent thread and a theory as to how allergies can promote ITP symptoms. Most will probably dismiss it. But IMO, it is very important to understand this aspect to help manage your ITP. Once you've got ITP, you need to pay attention to all possible factors. Your idea of mold being a factor is very plausible.

cheers,

john

P.S. Avoid the splenectomy if you can. I had mine in '94 which was a success. But knowing what I know now, I think I could have avoided it

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 1 month ago #29484

  • leoned
  • Offline
  • Posts: 10
  • Thank you received: 0
HI!

My wife is listed for plasmapeheresis, it could be done in the next several days. We let you know our advances.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 9 years 1 month ago #29688

  • ashybobashy
  • Offline
  • Posts: 131
  • Thank you received: 14
Hi,

Well its quite strange that they give you treatment straight off. If its below 10, thats when i was treated but at 16 i was told to go away and come back if i still feel its lowered lol. It really depends though. I hope you are better.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 11 months ago #30730

  • CindyAnn
  • Offline
  • 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
  • Posts: 227
  • Thank you received: 39
KO,

How are you what are your counts and how do you feel? I enjoyed reading your story and if it comes down to having the spleenectomy that my hemo keeps suggesting - I will have the "indium scan" before - thanks to your research and results.

Cindy Ann

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 11 months ago #30742

  • KO27
  • Offline
  • Posts: 91
  • Thank you received: 6
Cindy et all,

Thanks for the inquiry. My last platelet test was done at the end of January and I had 81K, which is the highest they have been since Novemeber 2011. I'm currently taking no medication.

I've been quiet for a bit because I've been doing some evaluation, and while I think I might be on to something, I've thought the same previously before running into a dead end. However, I will say things are looking pretty positive at the moment. If my platelets continue to rise I will start to explain the apparent reason for this (and no, it's not witchcraft, Chinese medicine, Gerson, or anything like that).

I would like to ask a question of anyone willing to answer- have you noticed any cycles to your platelet count, particularly with respect to seasons? By this, I mean objective data; regular platelet counts over time. Have you ever done a timeline with your platelet counts over a period of two years or more with regular, perhaps monthly, data points? If so, are your platelets consistently higher or lower at particular times of year. If so, where do you live? That last question is very important to correlate with the counts so if you are going to respond please do include the general area or state where you live.

I was going to make a post requesting this information of anyone willing, but since Cindy wrote this is as good of a time as any.

Also, I did want to let you all know that my inquiry into plasmapheresis was just that- it's not something I ever considered, but my wife wanted some current information.

Now, Cindy, as far as the Indium test, I've heard that Johns Hopkins may now be doing the test domestically, though I have no idea whether insurance companies cover it. The irony is that when I had my test done in England in late 2011, I took the results right to the Johns Hopkins Hematology department and they thought it was compelling information to have, though I'm quite sure many other people did the same before me.

I truly would not consider a splenectomy without that information. A finding that your platelet destruction is sequestered in the spleen means that the probability of success goes from 65% to 87%, and statistically that is enormous. Moreso, it will help you avoid an unnecessary splenectomy in the event the platelet destruction is outside of or not limited to the spleen. That itself could be huge.

I would, like many others on here, advise not rushing into a splenectomy. There are situations that can make it unavoidable, and your Hema can probably outline those situations for you, but if it's not critical then give yourself some time.
When it's not medically necessary I would say lifestyle could well be the next determining factor; if you're 21 and ride motorcycles a lot then maybe it's a good idea because even a minor motorcycle accident (is there such a thing?) could cause a brain bleed.
On the other hand, if you're an office worker and not at risk for injury then I might not consider it too strongly, though of course a lot of other factors have to be considered still.

I will say this though; where I found ITP to be particularly insidious is that below a certain threshold (mine is around 30K-35K) I get a bit of brain fog and below perhaps 55K my energy level drops, and quite sharply again below 30K. This is tough because no matter whether you make your living with your brain or your muscles, ITP can affect it. My intellectual productivity drops enough below 30K that for that reason alone I've considered a splenectomy in the past. If nothing else I hope this demonstrates how very personal these decisions can be.

Also, if I haven't mentioned it before, please be extremely careful of what treatments you accept. I was a bit naive, which is why WinRho nearly killed me, because I'd previously only ever taken OTC drugs and pretty much as long as you follow directions you can't get hurt.
This is a terrible assumption when it comes to heavy duty injectable, etc. drug treatments for something even as comparably benign (with respect to cancer, AIDS, HCV, etc) as ITP.
Every single treatment for ITP can hurt you. Every single one. And some can definitely kill you. This isn't anecdotal. WinRho killed like nine people since, I think, 2006. Rituxin, which did appear to help me, toasted my immune system for a year, IVIg can have bad side effects according to my Hopkins hema, and on and on. I've refused to try Promacta and N-Plate, though I did consider Promacta, but I ultimately decided the risk was too great because we know so little about them at this point. We know more, a lot more, about most of the other treatment so it makes their use a calculated risk instead of the gamble I perceive with Promacta/N-Plate.

Please bear in mind I am in no way saying "Don't take XXXX"; I took most everything. What I am saying is to not be naive- recognize that every ITP drug has a cost to your body. There is no Asprin, no Benadryl, no side-effect free miracle drug when it comes to ITP.

So that's it for the moment. I am supposed to have my platelets checked at the end of the month, and if the results are positive I will outline my working theory in basic detail.

In the meantime I would welcome any data anyone is willing to provide regarding platelet counts over time, where there is enough data to establish if a season or other pattern exists.

Thanks to everyone,

Peace, KO

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 11 months ago #30743

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
KO:

I have seen parents in the children's section comment about seasonal drops. Mostly summers when kids are in the pool, and sometimes during spring and fall when allergies are on the rise. As for me, I never noticed any correlation between seasons and drops. Nothing I did or did not do seemed to be a factor.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 11 months ago #30744

  • alicein
  • alicein's Avatar
KO,

Thank you for pointing out that all of the treatments offered for ITP are harmful to the body. I am aware that everything we do is a risk vs. benefit decision, but where there are other, non-harmful alternatives, it makes no sense to damage the body. While each of these treatments is said to leave the body within a given time period (IVIG being several weeks), we saw first hand this was untrue. These drugs stay in the body's cells at some molecular level. When our boy detoxed out the IVIG he'd been given, it was horrible. We knew that's what was happening because the ONLY time in his life he'd been sick EXACTLY the same way, was when he had IVIG (this happened at least 6 months after he'd had it). At that moment (and for the 3 days he was completely out of it and horribly ill), I realized that when they say a drug has a certain half life, they are wrong. Every drug stays in the body at some level, forever. It took us antidoting benadryl AND prednisone to get platelets again. Benadryl he'd had many many times since infancy.

So, thank you again, for pointing out how critical it is to not take these treatments without considering the long term consequences, which can in fact, be worse then ITP ever was/is. Especially when other, healthful options, exist. In my immediate family is doctor who has had a wife and child die from cancer (after going through all possible treatments). He tells our family (unfortunately not allowed to tell his patients) that he would NEVER take the drugs given for any of the modern day diseases we are seeing - including cancer. That, coming from a doctor of 25yrs. He does offer every one of his patients lifestyle changes that they can make to avoid drugs. He said in 20% of the cases people will walk out of his office and do what he said to avoid having to take medicine. The other 80% tell him they want a pill, it's too much work to get healthy, they're too old, on and on and on the excuses go. I think it says something......

Thanks again for such a well stated post.

All the best.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 11 months ago #30751

  • jeffrey71
  • Offline
  • Posts: 555
  • Thank you received: 84
KO,

You story and writing are wonderful. I thank you from the bottom of my heart. I am tracking my platelets mathmatically and I hope to be able to build a math model to explain my fluxuations. I have data going back to early November.

I have just completed IVIG Gammagard, with success. I know that my count is dropping but I will not have another CBC until the 28th.

As to the Chl. A very very interesting observation. I am a triathlete and I will be spending a lot of time in the pool very soon. Approx 5 hours weekly. I will be assigning the time a variable reflecting a portion applicable of any platelet drop. Dependent upon any other determinable variable. I fully expect to be able to build a parabolic function equation.

My platelet history goes like this: ITP discovered at 44k, various testing, high of 44 low of 29k. IVIG then 539k, last Friday down to 414k. More data soon.

Please keep writing and track those variables!

Good Luck!

Jeffrey

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #33952

  • luca
  • Offline
  • Posts: 95
  • Thank you received: 11
I too have been curious about the fluctuations in my counts, which, over the past year, have ranged from 14K to 33K without treatments (up to 75K with Prednisone for a short while). Just finished Rituxan two weeks ago and am now down to 14K again, but I understand it can take 12 weeks to show changes, if successful. To answer your question, before any treatments, I've had relatively high counts (i.e. 35K) in November, July and August, with the rest being in the low 20's. Fortunately for me, I have yet to have any bleeding symptoms, but do bruise easily so have had to change my lifestyle (I do a lot of carpentry, fixit projects, landscaping etc.).

I'm interested in whatever theory you are considering; my doc is a great guy but poo-poos any non-traditional ideas (e.g. diet, allergies,even possible viral or bacterial etiologies). I plan to keep graphing my counts (weekly so far) so let me know if you want more detailed data...

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #33957

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
I think the explanation is pretty simple. Counts fluctuate because there is constant production and destruction. Counts can change hourly, so seeing counts go up and down weekly is totally normal. 14k and 33k are not that far apart, only 19k. If you had counts of 259 one week and 278 the next week, you wouldn't think a thing of it. No one on this earth has platelet counts that stay the same all the time.

Also, counts are not exact. Some platelets are too large or too small to be counted, and sometimes white cells sneak in there and get counted as a platelet.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #33959

  • KO27
  • Offline
  • Posts: 91
  • Thank you received: 6
Luca and all,

I don't have a definite answer yet, but I'm making changes and my counts are improving, so I'll share the data I have.
It's important to understand that, while I've been doing an analysis on my own ITP for a while, and I feel confident that I've narrowed the cause to a particular range of activators, there has is no way been a single smoking gun which, when removed from my environment, provided spectacular results.

Basically, what I've been able to determine is that my ITP is allergy related. I think, like most of the time in the outside world, in order to have a comprehensive failure of a well thought out system (i.e. commercial airplane crash, etc.), an unlikely confluence of events is to blame. This is to say that the answer is not just one thing; multiple failures have to occur simultaneously which overpower the system's built-in redundancies designed to cope with emergency situations. The human body works the same way.

In order to accurately analyze data you need solid, reliable data points to gain a purchase on. In my case consistent seasonal fluctuations provide this. Consistency is the key. A reliable pattern must be present and visible. You can't be trying to read tea leaves. It is only one set of data points, but it's perhaps one more than most people get. Or see.
It means something. It clearly means one of two things; either the cause of my ITP is less present in the period from October to January, or something is present that allows my body to more effectively to defend against ITP.
When I meditate on all of the things that are different in this timeframe from the rest of the year, the obvious (obvious meaning that it sticks out, not necessarily that it's correct) answer is that my exposure to air conditioning in significantly reduced. We live in Orlando, FL so unlike the rest of the country we almost never heat our homes and after September our air conditioning usage drops considerably.
So, as I explained in earlier posts we examined the central air unit for the section of the house we sleep in and discovered greater than normal mold issues and proceeded to remediate them.
I had hoped, agreeably naively, for a magic bullet solution, but it didn't happen.

For sure, things improved. My average platelet count, year round has increased (though there is no possibility of definitely correlating the AC repair as the cause), but my platelets are still in the 55-65 range through the parts of the year we use AC. Up, but nowhere near normal.
This was frustrating because I really thought I was onto something, and not just an answer for myself. I was hoping that if I was right that the specific steps we took could help a lot of people.

This led me to take a step back and think about the nature of system failure and it occurred to me at once that the only time a well thought out system (commercial airplane, human body, etc.) fails from one cause is when the failure is premeditated or otherwise intentional (missile, bomb, bullet, poison, etc) and that accidental failures, almost exclusively, have multiple causes simultaneously.
This is so, precisely because the system exists in a harsh environment and is engineered or adapted to anticipate isolated component failure.
I use the commercial airliner analogy because though many man made systems are complex and robust, very few are engineered to protect life and even fewer are engineered to protect 400 people moving together at 500 miles per hour. The cost of failure for an airliner is immense for all parties involved, and so very few things in the world are designed with the same system redundancies.
It's easier for me to logically consider a mechanical object than a human body, perhaps for some abstract and person reasons, so the commercial airliner analogy has proven invaluable to a reasonable point.

The nature of system failure, in my analysis, suggested a high probability of multiple causes. However, it seemed unlikely to me that the causes would be totally unrelated (such as mold and emotional stress or mold and physical trauma) because systematic failure is usually caused by the interaction of two or more problems, not simply the fact that two or more problems occurred at the same time, and to have interaction there has to be a conduit for that interaction, which is to say a clear way for one problem to exacerbate the other.

So, hypothetically if I was getting 'gassed' by my mold in my AC system, what else is happening?

Well, mold, except in cases where it's universally toxic (black mold, etc.), is an allergen. I have well documented, and occasionally comic, food and environmental allergies. Green peas, lentil beans cause and an anaphylactic response, while cats, dust, etc. cause common symptoms.

My next step was to start removing certain foods from my diet, one at a time. While this may sound odd to some people, I didn't get my platelets checked after every experiment to objectively evaluate their efficacy because it was impractical to demand bloodwork twice a week and I didn't want to put my veins through that.

However, like a lot of people with ITP I've become extremely sensitive to my body and how it's running; by considering my energy level, my digestion, my sleep quality, my ability to focus, and several other factors I can get a general idea if improvements are occurring and at that point I've sought out a blood test for confirmation.

I'm not running out of time, but I'll try to wrap this up quickly so I don't leave anyone hanging until I get back to my computer.

Right now, Wheat is looking like the most likely co-allergen to mold. I recognize it's the food villain du jour, but it's pop culture status may well be deserved.
As I've mentioned in previous posts I've had digestive tract issues for most of my life and once I eliminated wheat, gluten, and pretty much all bread, from my diet (very difficult to do this, btw) my energy levels have become consistent. This won't be remarkable to people without ITP, but a lot of ITP sufferers have energy crashes, brain fog, and fatigue.
It all went away.

My year round platelet average has been rising, though I'm still not close to normal, and most of the symptoms of ITP are a memory at this point.

I am on no medication, save sublingual allergy drops for environmental allergies.

It is very important to note that I DID NOT test positive for Celiac on any of the five or six different tests I took from various doctors. I did test positive for a wheat allergy with an ENT/Otolaryngologist, but even that reaction was not profound.

To summarize, the combination of reducing/eliminating mold exposure from our AC system and the elimination of wheat/gluten/bread from my diet has occurred concurrently with a rise in platelet count (though not to normal levels) and a nearly absolute cessation of ITP symptoms in the absence of any ITP medication.

My opinion, while I continue my evaluation, is that the proximate cause of ITP in my instance is likely to be an allergic response to the interaction of two or more stimuli.

This is as much as I believe I know as of June 2013, though I did run out of time to provide additional corroborating information, which I will try to do as soon as it's convenient.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #33960

  • KO27
  • Offline
  • Posts: 91
  • Thank you received: 6
Sandi, I think the part you could be missing is that a count of 14 and a count of 33 might only be 19 apart, but the difference in terms of percentage is 230%. That isn't like going from 259 to 278, it's like going from 259 to 596!

For sure, it's a lot easier for the body to manufacture, or not kill, 19K platelets than 337K, so this isn't a strictly fair analogy but it still critical to understand the ratio, not the raw numbers.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #33962

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
KO27, you are forgetting the margin of error in the platelet count. I've heard it put at plus or minus 10k.

That said, I think some of my fluctuations can be explained by an unrelated digestive disorder. When my gut is inflamed, my immune system goes into overdrive. And eats platelets. So I do think in some cases you can find causes. I also get drops when I get a cold or virus.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #33966

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
You're right about that, KO. But in the ITP world, a difference of 19k in a week or so isn't a big deal. I know it seems that way when someone goes from 2k to 21k and it certainly can make a difference in symptoms and whether or not to treat, but it's not because you ate yogurt yesterday. A platelet has a life of 7 to 10 days, and a healthy adult produces about 1 x 1011 platelets per day, so there is a lot going on, even for ITP patients.

I am also finding that gluten plays a big part in how I feel. I was gluten free for 5 or 6 weeks and did notice an energy increase. Then I had a bad day and fell off the wagon and I'm right back where I began....too tired to even start my day. I have also tested negative for Celiacs but am convinced that gluten plays a part in overall well-being.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #33968

  • ashybobashy
  • Offline
  • Posts: 131
  • Thank you received: 14
I agree sandi with the gluten thing. I had cut out bread slowly and ate a well balanced diet for a few weeks, and althought there was a gradual improvement when I started eating bread after a day I started feeling horrible. I do not have celiacs as a friend has it and she had awful symptoms but I believe there is a sensitivity there that when we eat gluten it ends up in our bloodstream and seems to inflame our system.

I must reiterate how much I believe that gluten is something which people should avoid or try to cut out. I don't think it is solely the problem or the answer to people's problems with itp but I think, there is a connection with immune problems and gluten sensitivity.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #34017

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
So someone mention ratio and numbers and here's my thought!

If there is a margin of error that is + or - 10. Than your numbers could really be any of the following. Starting from lowest going to highest:

4-23, 5-24, 6-25, 7-26, 8-27, 9-28, 10-29, 11-30, 12-31, 13-32, 14-33, 15-34, 16-35, 17-36, 18-37, 19-38, 20-39, 21-40, 22-41, 23-42, 24-43.

Meaning your count really could of been 4 the first time and 43 the second time which is a good response or your numbers could of really been 24 and rose to only 33 which means you basically had no response.


You could drive yourself nuts if you are too focused on the numbers. Knowing your numbers is one thing but also you need to know how you feel and your symptoms. It is the overall picture that counts!


My person opinion which means nothing! STOP FOCUSING ON THE NUMBERS!

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #34041

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367

You could drive yourself nuts if you are too focused on the numbers. Knowing your numbers is one thing but also you need to know how you feel and your symptoms. It is the overall picture that counts!


Exactly.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #34045

  • KO27
  • Offline
  • Posts: 91
  • Thank you received: 6
Guys,

With all respect, and I mean that sincerely, I think you're missing the point.

The numbers ARE the point. If you have 150K platelets, you don't have ITP, if you have less, you do. The numbers are the objective and defining measurement of ITP.

There is no error rate of +/-10. There just isn't. Whatever the blood test sample says, is how many platelets are in your body. The sample size is large enough to be more accurate than birth control.

Winnifred's analysis is, again with all respect, completely wrong. And that's important. You can't put this stuff out there for people who are new to ITP or still learning about it to read and believe; we all have a responsibility to be accurate for everyone's sake.

What Sandi was alluding to is NOT an +/-error rate. It is the belief that over a period of time; a day, two days, a week, or due to external circumstances such as a cold, or dietary influences, that two blood platelet counts from the same person could vary by as much as +/10K platelets.
This is NOT an error rate. Believe me. I've had the 'holy shit you don't have any blood platelets' reaction from medical staff and had the test run again within a few minutes. It varied by 1K platelets, and probably not even that much because it was likely from rounding (say 20350 platelets would be rounded to 20K and 20700 would be rounded to 21K).

Blood platelet analysis is settled math. It's a measurement of the platelets in your body extrapolated from a sample that is several times larger than it needs to be for statistical accuracy.

The other part to keep in mind is that this consideration is only valid for higher platelet counts where 10K platelets isn't 100% of the sample size. i.e.; if you have 10K platelets, you're not going to get measured with 20K the same day unless you're undergoing therapy.

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.

I fully agree that if you have 35K platelets one week, 43K the next, and 32K the next that it's not statistically significant. Because it's not.

But, what I have been speaking about are significant year over year changes where my platelets were X all last Spring and they are X+30 all this Spring. That is real, and it is statistically significant.

Ok, but what should you care? Well, 'statistically significant' means that it's a fact, a clue, it is an objective truth that can be used to research external factors that may influence platelet counts and ITP itself.

Moreso, it's the only one we have. So yes, if you're numbers are consistently up over a previous year by say 70% or 100% then it can be reasonably deduced (though not with 100% accuracy) that something has changed; either factors contributing to your ITP have been reduced or something has increased your body's ability to deal with it.

The numbers aren't nothing. They're everything, IF, you are fortunate enough to see an improvement (or counter intuitively, a decline) that is significant enough that you can consider what may have caused the change, study it, and exploit the opportunity.

Will the answer always be found? No, certainly not. Not even most of the time. I'd go so far as to say rarely. But the opportunity is there, and if you put your mind to it you might just catch lightning in a bottle.

I have never, not for one second, believed that my ITP was caused and propagated by bad luck, that it just came out of nowhere, or that I was predisposed to it.

It's caused by SOMETHING and it is possible to know the answer.

How do I know? I have made considerable improvements to my environment, as I have told, and my platelets are significantly higher than they were last year at this time and they have been for months, in the complete absence of treatment.

The numbers absolutely matter.

Please Log in or Create an account to join the conversation.

New to ITP, my story attached, have questions 8 years 7 months ago #34048

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
KO:

There is a margin of error. If you read about the analyzers that count platelets, you will find that platelets that are too large or too small do not get counted. You will also see that white cells that are sized outside of the parameters of the analyzer can get counted as a platelet. This is not exact. When you deal with ITP for a period of time, you just get happy that you're above treatment level and that counts are safe. In time, it doesn't matter anymore for most that you went up 15k in a week. I was not stating that the error rate is related to external forces at all. The error rate has to do with the actual count.

We have had people here that have had two counts done on the same day and they did get two different readings.

If you read about autoimmune disorders, it is well accepted that they start with a predisposition and then become triggered by something which can include environment. With ITP, it is generally accepted that antibodies cause destruction and lack of production. Antibodies for ITP are not measured on a regular basis. Having Lupus though, I have antibodies measured every 3 months. Those antibodies come and go all the time, so it would follow that ITP antibodies also come and go, which would or could be a reason for a trend upward over time.

Please Log in or Create an account to join the conversation.

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo