Joining the club of ITP

Hi all,
I am Newman Townsend - male, 49years, Philippines/Cebu island; joining this forum and this is my first post.

Over the last 3 weeks my blood was tested and platelet count is 95, 70, 78 in that order. MPV: 12.2, 11.5, 10.2; Lymphocites: 42; red cell: 4.5; white cell: 5.1; Hemoglobin 13.2; Hematocrit 38;

It all started with a routine test at my request. Then doc ordered CBC once in every week to monitor. I have no symptoms at all, no weakness, no rash, no bleeding etc. All fine, but down with anxiety and fear following the tests. I have stopped all my exercises and workouts. Doc is asking me to test Bone marrow, antibodies, kidney and liver functions. No medicines for now, put on observation.

I am physically active, as a farmer I work in my rice and coconut fields. Previously I was in the Staffordshire, UK for study and then work. Returned to home in 2002 and living here simple life on my terms. Eat healthy, stay healthy, no alcohol etc.

I exercise a lot, have had a history of low vitamin B; over the years taking Vit B supplements. Changes to my diet in last 12 months: taking Whey Protein powder, cooked soya bean granules and 4 big cups of coffee with milk, sugar. I am not diabetic. 12 hr FBS readings: 78, 88, 89

Reading a lot on this forum. It is a lot. Will continue to read.

Please guide me on diet, presc fee medication etc. My questions:

1. How long it takes usually see the platelet readings back to normal ? I stopped taking protein powders. From today onwards I stopped taking coffee. I am suspecting these two.

2. Can I do weight training and 5k runs [2 times per week] with this condition?

Thanks a mil in advance; I do appreciate for your support.
NMTS

Hello. I'm happy you found us. First, your platelets are actually not that bad. They are safe numbers, and I wouldn't think you'd have any symptoms with those counts. It's possible that they will never drop any lower and in that case, all you would need to do is monitor occasionally. I don't know that all of those tests are necessary unless your doctor sees something else in your blood work that isn't normal. It's possible that your counts have been in that range for a long time and you just didn't know it.

Your counts may never return to normal, but that's okay as long as they don't drop below 30k. That is the point when you might need medical intervention if symptoms appear. Try not to worry. Even if counts do drop, there are treatments and most people manage ITP pretty well.

There are no special diets that help. I'd check with your doctor, but you should be able to still exercise with counts in that range.

Hi Sandi,
Thanks a lot for your quick reply and I truly appreciate.

Actually my wife is in deep shock as I am; did not tell our parents and friends. But I have decided to change my life style.

1. No more coffee, no more protein powders. But according to the info on this site, protein intake improves platelet count. I am suspecting the quality of powders. Literature also says Coffee is not good for people with ITP.

2. Adding rice, which is our staple diet to every meal and get back to our 'normal diet'.

I have been vegetarian for last 10 years. But my family continues with lots of chicken, fish etc. My wife was never in agreement with my coffee+protein that I started a year ago. She also did not like my giving up meat.

Thanks for your advise on exercises, I will start back slowly. Of course I will keep you and the forum posted.
With appreciations,
NMTS

Just be careful when changing your diet. Sometimes the things that we think are healthy really are not. Chickens are injected with steroids and antibiotics. Fish can contain high levels of mercury. Rice contains arsenic and should be rinsed well before cooking. Many vegetables are GMO and are not healthy. I've recently switched to an all organic Paleo sort of diet.

There is no need for shock. ITP can be a nuisance but most people continue with a normal life, even with low numbers. The criteria for ITP is counts consistently below 100k, and you just squeaked in there. If your counts never drop, your life will continue on the same as it is now. If they do drop, again, there might be adjustments but nothing that is debilitating. We'll be here for you if that does happen. ITP can take some getting used to, but everyone adjusts eventually.

Hey Sandi,
The rice/arsenic thing and the GMO unhealthy thing are controversial claims and maybe should be labeled as such, as opposed to the very expert state of the art information on ITP treatments and prognosis that you have provided for so long on this forum. I don't want to debate these things, just identify where there is controversy and where there is consensus.
Erica

Arsenic in rice is not controversial when even the FDA admits it.

www.fda.gov/Food/FoodborneIllnessContaminants/Metals/ucm319948.htm

Some rices have more than others:

www.consumerreports.org/cro/magazine/2015/01/how-much-arsenic-is-in-your-rice/index.htm

Yes, I suppose it is debatable. I've seen enough proof though to make me want to avoid those things. Pointing it out to others so they can do their own research isn't a bad thing if someone wants to improve their health. People make their own choices. If someone wants to make a commitment to a lifestyle change, they need all the ammunition they can get. I brought it up because Newman was interested in diet change.

So Newman, it's up to you.

I do still eat rice occasionally, but I do rinse it very well first.

OK, thanks, point taken about the existence of arsenic in the rice supply. However the relevance of rice arsenic to immune disorders and particularly to ITP is not established. To be a little silly but making a point, for all we know it could help with ITP. NOTE - arsenic does NOT HELP ITP, I'm not saying that!
Erica

Well, I don't think that anyone is ever going to specifically study a direct connection between ITP and arsenic, so that will never be established. Arsenic in the diet cannot possibly be a good thing so avoiding it will not hurt. Arsenic is toxic and levels build over time.

Here are the hematological side effects of arsenic:

Hematologic

Hematologic side effects including leukocytosis (up to 50%), anemia (up to 14%), thrombocytopenia (up to 19%), febrile neutropenia (up to 13%), neutropenia (up to 10%), disseminated intravascular coagulation (up to 8%), and lymphadenopathy (up to 8%) have been reported.[Ref]

www.drugs.com/sfx/arsenic-trioxide-side-effects.html

Personally I'd be more concerned about a male having too much soy [which it sounds like Newman may have daily] than I would anyone eating rice now and then.

When living in Japan we were advised to not just rinse rice but to rub it together under water until the water ran clear due to the talc on it. Stomach cancer I gather is high there.

Sandi I believe that page you cited from drugs.com is pertaining to a medication, Trisenox - not to arsenic in rice or food - at least that's what it looks like to me.
Arsenic
Generic Name: arsenic (AR-se-nik)
Brand Name: Trisenox

Arsenic is used for:
Treating a certain type of cancer APL in certain patients. It may also be used for other conditions as determined by your doctor.

Arsenic is a chemotherapy agent. The way it works is not completely understood. It may work by blocking the growth of cancer cells.

In Summary
Commonly reported side effects of arsenic trioxide include: ....

Now don't rag on me, I'm not saying there are no side effects to ingesting arsenic, all I'm saying is it appears to me that this page is not talking about foods but a medication.

I would think maybe this falls under the category of "everything in moderation" - eating rice now and then, is it going to kill you?

I feel a lot of threads are getting away from the subject of ITP & what this board is all about - I guess I don't like that this board is becoming an anti everything.

Thanks to all of you. I am really pleased to see the assistance here. Quickly,

1. Visited another doc for second opinion - spent all day waiting and then talking to him. He wanted to put me on some platelet drip which I politely refused. Basically I do not have any symptoms yet. But this doc said symptoms will be apparent any time and I may start to bleed. His position is that injecting platelets help me quickly to fight off any virus and stabilize the platelet count. I told him that I might return sometime later, just in case to keep that option open.

2. My sis (nurse) from Washington says it could be dengue fever. Asked me to get tested for antibodies etc. Will have to go a particular health centre, which is bit far.

3. As I already wrote in first post, "Doc is asking me to test Bone marrow, antibodies, kidney and liver functions. No medicines for now, put on observation."; now he added few more tests like vitamin levels in the body, Hepatitis. I am not keen to do all these tests, will wait for another CBC, scheduled for this Saturday.

4. Both docs told me to a big NO to coffee. We take 100% pure coffee here, that can be seriously bringing down the platelet count apparently.

Rice: I am aware of the presence of arsenic, but cannot help much. As "Ananta" pointed out, Even FDA admits it; as a farmer I know what it is. Washing and squeezing the rice is very important before cooking. Actually when I eat rice I am feeling better after 6 hours. So my wife feels I have dengue. Rice is one of the known remedies for dengue here.

Food: I am not turning to fish or meat now. But this forum clearly states benefits of Papaya leave juice. Now going to get a few leaves from garden. But is it real?

I also found a few conflicting aspects about the content on this site re diet:
1. Lemon / lime juice. Apparently it reduces count further? some places, it is recommended, some places it not.
2. Same with ginger and garlic.

So this is where I am. Still confused, not focussed/ stabilized yet. Thanks to all for your time and efforts.
NMTS

Oh thanks - I was in a hurry to get to my mom's this morning. I guess I didn't read it very well.

This is a better source:

Bone marrow depression may result from acute or chronic arsenic intoxication and may initially manifest as pancytopenia.

Both acute and chronic arsenic poisoning may affect the hematopoietic system.
A reversible bone marrow depression with pancytopenia may occur.
Anemia and leukopenia are common in chronic arsenic toxicity and are often accompanied by thrombocytopenia and mild eosinophilia.
The anemia may be normocytic or macrocytic, and basophilic stippling may be noted on peripheral blood smears [Kyle and Pearse 1965; Selzer 1983].
According to the NRC and IARC, there is a suggestive association between chronic arsenic exposure and immunosupression [NRC 2000; IARC 2004].
Acute intoxication with arsine gas can cause fulminant intravascular hemolysis.

www.atsdr.cdc.gov/csem/csem.asp?csem=1&po=11

I'm not a fan of soy either and try to stay away from that as much as possible too.

Sandi,
Thanks for your quick response. I am trying to be very brief and up to the point to get best possible answers. I now feel that I should provide a bit more details about my diet:

1. Over the last 14 months, my rice intake is very very low.
2. Soya chunks - twice a week, but again not that regular too.
3. Red kidney beans and Lentils are more frequent for me. Supplying my (plant) protein

This morning I realized that I have gained 4lbs of weight due to rice eating and excess amounts of water consumption. That is no big deal, I can work those lbs off, once my platelet counts are back to normal.

Thanks again,
NMTS

Newman:

Most of the foods listed on this site don't necessarily lower platelet counts, but they can reduce platelet stickiness. If someone has a low count, that could cause more symptoms.

What kind of doctor did you see today? Platelet infusions do not help to fight viruses nor do they stabilize the platelet count if someone does truly have ITP. You may never have symptoms if counts stay in this range, so his comment about symptoms and bleeding starting at any moment is a little off. Was he talking about IVIG maybe? That would make more sense in that context, but your counts don't warrant that treatment yet.

As for Dengue fever, do you have symptoms of that? Are you in an area where that is common?

Papaya - I can't say that it works and I can't say that it doesn't. If you feel you need to try it, no harm there. Just make sure that it's a reputable company.

Sandi,
I think your last post is very useful for us. My wife and daughter 'decoded' your message, further researched, while I was going around clinics to find the options/ costs; but we don't have all the tests and samples will be shipped elsewhere to get the result; So I did not bother to give my blood. I am perfectly normal, was able to walk (my gadget showing 13k steps for today already) normally; no pains, no headache, no bruises etc.

My daughter found some article that one should try fresh lemon juice before Papaya leave stuff. I obliged, downed a big glass full of it after my lunch: rice+vegetable stir fry. Actually felt a lot better; even the mild fever in the evening gone. Tomorrow will try papaya juice.

"What kind of doctor did you see today" - he is normal GP, our family friend. But as you said - "so his comment about symptoms and bleeding starting at any moment is a little off." We totally agree with you, as I do not have any symptoms yet. My sis also felt the same, but she was not sure. She is of the opinion that I could take the platelet drip (I am not sure what drip it is - did not ask details) if symptoms such as bleeding show up.

I will update all of you and the forum after trying papaya. My family primed my body with the fresh lemon juice now.
NMTS

Platelet transfusions should only be used for ITP if there is active bleeding and counts are low, usually emergency situations. A hematologist knows best how to treat ITP. Most family doctors are not all that familiar with it, no matter how well meaning they may be. Platelet transfusions can cause problems so you don't want to have one if you don't need it.

If you're feeling perfectly normal and have no bleeding symptoms, there isn't anything that should be done at this point other than monitoring counts.

hi Sandi and others, all these days I am almost normal. No symptoms. Did not do any further tests. What I observed is - fatigue, if I do resistance workouts even little. Walking up to 4 hour continuous is fine, but not jogging. Great and energetic feeling if I eat rice.
No fever at all whether morning or evening.

I personally think my platelet count did NOT improve yet. most websites saying that ITP usually requires 8 to 12 weeks to improve.

I just want to post this back to forum.

Hey Newman, nice to see you back. There really is no certain time as to when ITP will improve. The time period can be anywhere from two weeks to never. Some people just have counts that hang in the 60's and 70's forever and never require treatment. Some end up with major drops and some have counts that eventually go up. It's different for everyone.