itp

hi i am new here i am 52 and have been told by my doctor.i am chronical itp?
my red blood cell are right and my white blood cell are right, but my plattlet couont is way low ( 8ooo shoould be 130,00-140,000) my doctor pput my on steroids for 4 day this brought the number up tp 80,000. but ip has drop down.is ther a cause? or cure? with out removing my spleen or doing a bone marrow exam? i have been told there is no way to tell what causes it or to help itp. any help would be greatly helped!!!!!

Mr Goofy - hello. No, there is no known cause or cure for ITP. Sometimes it could be triggered by a medication or an illness, but stopping the med or getting better doesn't always make the ITP go away.

Splenectomy is not a cure, only a treatment that may or may not work. Studies have shown that the success rate goes down after the age of 40. A bone marrow biopsy is not necessary to diagnose ITP, but many here have had it done just for peace of mind that nothing else is going on.

It sounds like you had a great response to steroids and being on it for a longer time period may have caused a remission. Four days is very short - most are on it for weeks or months. Is that the only treatment you've had?

ITP can only be determined by the process of eliminating all other testable illnesses. That's because there is no "Test" for ITP. The various tests, (bone marrow, blood) eliminate other possible root causes that can be tested for. There are multiple treatments but none of them are cures and their effectiveness depends upon the individual physiology. While you might find it difficult to embrace (like me), many people "live" with ITP and the low platelet counts and some decide not to treat ITP. The treatments generally have undesired side effects. I for example accepted a spleenectomy 10 years ago after hitting 0 platelets and being unresponsive to several Rx. There is however a generally accepted line of treatments based on historical responses and increasing Rx side effects. People here live with ITP and are an compassionate, enormous and valued resource to answer all things ITP (especially to answer questions you later wished you asked your MD). In the IT Pworld , 80,000 (commonly rounded to 80) is a number many which they could achieve.

Don't be surprised if you start obsessing about this ITP thing. It's uncertainty and emotions it brings are scary but you'll learn here how to cope, grow in knowledge and tolerate it. You might be blessed to bounce back and have enough platelets to lessen the worries and just need monitoring, Ask us ANYTHING and someone here has probably been there and done that. While we can't cure ITP, we can empower you to more fully understand ITP and become a knowledgeable and prepared partner with your MD. You will likely be overwhelmed in the initial stages as there is lots of info to absorb, but we will be here to help.

ok here is a question. I am new to this group...but I have had ITP for almost 3 years. I did not know for certain until this last Feb. when the Doc. I saw at a cancer cntr put me on prednisone. However, I reacted poorly and my counts dropped from the 50's to low teens. At that point I found a hemotologist..who listened well, researched, and helped me get off of the steroid quickly. He did another round of several tests (been there a year earlier) and is at peace as long as I keep them above 40 preferably 50. THey did go back up to that range but i seem to be stuck in the 50 - 70 range. Since this ordeal I find I tired easier...still bruise...and still struggle w/ dizziness now and then. Is this normal? I look back over life the last few years and realize I have been tired...stressed easily..and now know why. I have chosen to treat this ITP w/ healthy eating, whole foods, natural diet, etc. I no longer eat white flour or white sugar (rarely) nor preservatives if I can help it. Everything as fresh as possible. I am very glad for these discussion groups. I love hearing other stories and the interactions.

Being tired, inability to concentrate, foggy/fuzzy and/or dizzy are common complaints by folks with ITP. However it could also be a reaction to other illnesses (flu/colds/thyroid...). It's often caused by the ITP treatments we take such as Predisone (Steroid) - what treatments, if any, are you currently following?

The reaction of sleeplessness by Predisone is legendary. I used to sleep soundly for several hours but on Pred it's a fitful and short sleep. I now wake every 45/60 minutes and feel "wide awake". I can usually return to sleep but after several "wide awake" events I just give up and get up. This results in feeling tired later but I attempt to push forward unless I'm really exhausted (which happens often). Dizziness occurs usually when I first lay down and passes within several seconds.

Bruising is also a common symptom of ITP (there could also be other causes and each of us bruise at different levels. I don't bruise often even with low counts. However I seem to bruise mostly between 50-100 but not often < 50 (seems counter intuitive to me). Bruises can be small dime size or large grapefruit size and you'll know you didn't run into something that explains it source. Bruises and petichiae ( en.wikipedia.org/wiki/Petechia ) becomes early warning of decreased platlets and a need for a CBC test or MD visit. I have a standing lab order for a "STAT" (aka priority analysis) CBC which my Hemo MD reviews the same day.

mrsfish7 wrote:

ok here is a question. I am new to this group...but I have had ITP for almost 3 years. I did not know for certain until this last Feb. when the Doc. I saw at a cancer cntr put me on prednisone. However, I reacted poorly and my counts dropped from the 50's to low teens. At that point I found a hemotologist..who listened well, researched, and helped me get off of the steroid quickly. He did another round of several tests (been there a year earlier) and is at peace as long as I keep them above 40 preferably 50. THey did go back up to that range but i seem to be stuck in the 50 - 70 range. Since this ordeal I find I tired easier...still bruise...and still struggle w/ dizziness now and then. Is this normal? I look back over life the last few years and realize I have been tired...stressed easily..and now know why. I have chosen to treat this ITP w/ healthy eating, whole foods, natural diet, etc. I no longer eat white flour or white sugar (rarely) nor preservatives if I can help it. Everything as fresh as possible. I am very glad for these discussion groups. I love hearing other stories and the interactions.

Mrsfish - since you mentioned you have chosen to treat your itp naturally, I want to mention what we've found. High doses of vit. C helps really well with cell integrity to help prevent brusing/bleeding. Our son is on 15,000mg of powdered vit. C a day. We use the powder because high doses of C can cause the runs and the powder seems to not cause gastric upset like the capsules do. Before doing this though, you need to have a G6PD genetic test run to make sure your body does not have a gene mutation that the vit. C would be contraindicated in. It's more common in Asians, but you NEED to make sure you don't have it. The other thing known to increase platelets is Vit. E. In people who NEED their blood thinned, Vit. E will act as a blood thinner. But in people whose blood thickness is normal it is not a problem. My 11yr old takes 2000mg a day with no issue. I wouldn't recommend doing either of these things without some guidance from a naturepath at the bare minimum.

The last thing you might seriously consider is homeopathy. We've also started using that on my son and in just a day began seeing great changes in his status. If you view the alternative therapies section of this forum there is a lady named April who wrote quite a bit about it. We just started working with her and I'm so thrilled. She's very intelligent and knows her stuff. As I said, we've already seen good changes in just a few days.

I only mention these things because you mentioned you were doing natural. We are as well. But it's always better to have guidance from an ND so if you can find one, that would be wise.

Best wishes,

patti

I've known about my ITP for just over 18 months (going by various symptoms, it could've first appeared up to 4 years before it was actually diagnosed) and after one round of prednisolone for 5 months, I'm trying to keep on top of it naturally, with plenty of protein, as this helps your bone marrow make more megakarocytes which in turn are broken down into platelets. My theory is that if I have more platelets to start with, then my immune system will proportionally munch through fewer of them. I'm veggie so it's all about the dairy, eggs, nuts and pulses. Providing I don't drink alcohol, this seems to be working. Alcohol seems to have a rather adverse effect on my platelets, so much as I like a glass of vino with a meal, I have to go without when my count is down. but anything is better than going back on the pred!

Learn what you can, try not to panic too much (especially if your count fluctuates), and in the event of differing opinions between your haematologist and your GP, listen to the haematologist - they generally know better. as an example, I'm considering moving from the contraceptive pill to the injection, but I want to check with my haematologist first if there's anything I (or she) needs to be aware of, just in case it could cause problems with my ITP.

Before taking Vitamin E, I would check with your doctor. My platelets are in the 200k range and when I take Vitamin E, I bruise constantly. In larger doses, it is considered to be a blood thinner and may cause a problem for those with low counts.

patti wrote:

The other thing known to increase platelets is Vit. E. In people who NEED their blood thinned, Vit. E will act as a blood thinner. But in people whose blood thickness is normal it is not a problem. My 11yr old takes 2000mg a day with no issue.
patti

www.pdsa.org/about-itp/warnings.html
Food and Supplements that Interfere with Platelet Function
This list contains food and supplements that can change the way platelets work and make it more difficult for your blood to clot. They do not reduce the platelet count unless noted. A small quantity of these substances will probably be safe and not cause a problem.

vitamin E

I'm with Sandi. I was taking a daily multi-vitamin that had a normal amount of E in it, mentioned to my MD that I would get broken blood vessels a lot on my hands and fingers - she told me to stop taking the vitamin, I did and the broken blood vessels have been few now.

We find E was one of the keys to getting platelets up. Then again, we don't believe anything the AMA says.......

Hi Patti

I am pleased to hear that your son is doing better with his platelets. What I wanted to ask you though is how you KNOW that it is the effect of the vitamin E? How do you know it isn't just a natural part of the rollercoaster that is ITP?

I ask because my son has had hardly any treatment (two weeks on prednisolone) and his count goes up and down on a pretty regular basis. I've never really tried to use any natural therapies, and he eats a good diet anyway. If I had done though I don't know how anyone could distinguish the effect of that therapy from the natural up and down of ITP. I read quite often on these pages how people have changed something and they got better - But I can never ever see how they know that they weren't just going to get better anyway? Particularly with kids, they do mostly just get better anyway.

Sorry, I am an unreconstituted sceptic......

Ali

Thanks for the tips...and info. I will check April out. I have all ready thought after my next test (in 3 weeks) if my counts are on the low end (around 50) I will find a nutrionist. WE have some good ones around that work w/ MD's and I want to make sure I do the best I can w/ what I have to work with. These discussion groups are such a help for me to better understand it all. How long has your son been dealing w/ this? and how old?

alisonp wrote:

Hi Patti

I am pleased to hear that your son is doing better with his platelets. What I wanted to ask you though is how you KNOW that it is the effect of the vitamin E? How do you know it isn't just a natural part of the rollercoaster that is ITP?

I ask because my son has had hardly any treatment (two weeks on prednisolone) and his count goes up and down on a pretty regular basis. I've never really tried to use any natural therapies, and he eats a good diet anyway. If I had done though I don't know how anyone could distinguish the effect of that therapy from the natural up and down of ITP. I read quite often on these pages how people have changed something and they got better - But I can never ever see how they know that they weren't just going to get better anyway? Particularly with kids, they do mostly just get better anyway.

Sorry, I am an unreconstituted sceptic......

Ali

First and foremost, I know my son's body. I've studied it well throughout this. He doesn't go up and down per se. He has run between 0 and 2 pretty much nonstop. Second, we NEVER do anything new within a week of each other. This way we can tell if something is causing problems or is effective. In this way, we found phosphorus to be somewhat aggravating of his condition/symptoms. My son also tells me when he feels differently in his body. We are very aware here of symptoms, body feelings, etc.

Prior to the E, my DS was literally up and down on an hourly basis symptomatically - not count wise. The E seemed to make his body less erratic and go up in count (based on his physical symptoms because his are so obvious). Then we did some other treatments (more then a week away from the E) and saw another increase. So we can see things working together (it's not just one thing) as well as individually. It's always wise NOT to do more then one change at time simply because then you can't tell what is helping or being detrimental. This is true for allopathic treatment as well as natural treatments.

I find most people on these boards are skeptics.... sad. So many missing out on really good therapies that don't just cause one to "live" with itp, but will heal it. My DS was not expected to get over this. They expected it to be chronic because of how he got it, presented, etc. All illness can be healed. Just that too many people don't believe it.

I won't be around here much longer. To frustrating.......

patti

Patti

I honestly didn't mean to offend you, and I hope that you keep visiting the board - ALL ideas about how to improve itp are good. Maybe I've just been brainwashed by consultants for too long.

What I was trying to say, obviously not very well, is that I don't know how you can distinguish cause and effect. For example, the first six months that my son had ITP, his count never went over 20 and most of the time it was under 10. Then last October we went on holiday. He had really dreadful bruising when we were there, so I know that his count was in single digits. When we had been back for about a week, I started noticing that he had no symptoms at all, and after another week I got him tested - 124. Miracle! It didn't last but it was lovely while it did. My son is convinced that it was the holiday which caused the rise and he jokes that he needs several trips abroad every year. He might be right, who am I to say he isn't. Can't afford it, but thats a different matter! However, his consultant says that most kids improve by 6 months anyway.

Anyway, we have a chance to test the theory next week, because we are on holiday again - if he gets into triple digits again, even I will KNOW that it works!!

I hope your son continues to improve

Ali

Joking aside, I did think it might be something to do with vitamin D - we live in the unsunny northwest of England, but we had a very sunny week in southern Spain?

Ali, more importantly then the sun (Vit. D), which could play a factor, is his possible exposure to some sort of chemical in the air where you live. Do you live near any sort of factory/business that lets out large quantities of chemicals in the air? Even what the city might consider minute amounts? Some people are more sensitive to chemicals then others. The cause and effect here wouldn't likely be "vacation." It would likely be some sort of air exposure where you're at. I've seen this in several blood diseases in kids (specifically aplastic anemia). And maybe it was a fluke. Do get his vit. D checked by blood test. It should be in the mid 40's to be healthy. Nothing lower. We keep my son's in the 70's with supplementing while we're trying to heal his body.

I've dealt enough with health issues both medically and naturally I'm pretty comfortable in my assessments of my son.

You didn't offend me. Actually, it's a pervasive attitude from a lot of people. Too negative for my blood.

all the best.

Hi Patti,

I wanted to respond to some of the things you mentioned about your son. Hope you get this post. Don't give up on the forum--even if they don't agree with you. They have a lot of good information (have you looked over the old forum?---lots of good information!)I wanted to let you know that I had been completed well for 4 years. I didn't listen to my body. I know I am allergy to certain foods from allergy testing years ago (tea, tomatoes, fish, etc.). I started eating tomatoes like every day. I was drinking tea every day, plus adding sweet & low (also had fish the week before). I also let too much stess take over. And, I, personally, think this is why my platelets crashed all in one day. They were previously in 300,000 for 4 years. So, listen to your self instinct. I'm not sure if I can get these platelets back up--but I have eliminated all the foods I am allergy to from my diet. I will not eat these foods (maybe once in a great while) until they do allergy testing on me again. I am the type of person who is very allergic and I feel my platelets can react to this.

Good luck to you and your son,
Dee Dee

hi, yes, my doctor gave me pills to take for just four days, but i had another blood count done 6 mounth later and t drop back down, my doctor put me back on steriod pills for 8 day. i will check my pallat count next week, lrt you k now

What is the dose your doctor had you on for 8 days mrgooofy ?
I hope your count is up when it is checked next week!