Hello. Newly Diagnosed. Refuse Drugs.

I was just recently diagnosed with ITP last month. I have apparently had a low platelet count now for about two years and my spleen is enlarged (also found out from my mom when I broke the news that my spleen was enlarged when I was born). While I'm nowhere near really bad levels, my counts are hovering between 100K and 130K, which I gather that it should be between 150K and 400K. I noticed that I have petechia on my upper arms, but they are very very small and there aren't too many. I don't have any bruising anywhere and I am not bleeding out of anywhere that I should not be. So that said, I am not too bad a case yet and if I have anything to say about it, I won't get any worse. In fact, it is my goal to find whatever resources I can to help myself improve.

I am going to refuse any steroids or other drugs that are typically used to treat this. One, because I have read that many of these drugs never actually help people improve. Two, because I believe in the power of healing naturally (not that I am against Western medicine, actually far from it, but I believe that it is far from perfect, and there is a time and a place for it and nutrition and overall health and well-being need to play a role too). Third, because I on a specific diet for over 6 months now to detox from candida overgrowth, which is perpetuated by steroids. (In fact, I feel so good, I am now going to continue to eat extremely healthy and all-natural foods; raw, fresh, natural, and taking lots of good vitamins, minerals and probiotics).

With that said, I've seen the changes in my body from how I used to feel and how I feel now simply by eating the right foods. All of my digestive problems are gone, my sinus trouble, headaches, dizziness, skin problems, mental acuity is back, my tiredness is gone, etc. etc. So, I've searched around and found some natural supplements but they are expensive. I will probably end up buying them, but wanted to know if anyone else here has tried them with any luck, or have used certain foods to help boost their levels? I've read in some places that there are particular foods that can help, as long as you have a nutritional deficiency that those foods can fill that void.

Thanks,

Joe

Joe I do have ITP, diagnosed in 1989 - prednisone did put me in a "remission" with counts 85k-125k for a number of years. My spleen has never been enlarged.

My lab called my count of 114k "mild thrombocytopenia" not even ITP.

Are you seeing a hematologist? Has he/she recommeded treatment? With a count of 100k-130k if my doctor recommended treatment I'd have to ask why? and then get a second opinion. I'd be more curious as to why my spleen is enlarged.

Good luck!

Joe:

If your counts stay where they are, you should never have to treat. Most only treat when they get below 20k or 30k. I wouldn't think you'd have many symptoms with those counts, they are near normal. That's great! The drugs you mentioned do help people improve, otherwise they wouldn't be listed as treatments. They are not pleasant, but when counts get low and symptoms appear, there sometimes isn't a choice.

Most people do not find that diet helps platelet counts. If it did, no one would have to use the nasty, expensive treatments. Eating healthy can help a person in other ways though, so it never hurts to go that route.

You might want to keep an eye on the enlarged spleen. A slightly enlarged spleen is okay, but if it is seriously enlarged, you'd want to have a doctor try to find out why and have it removed if recommended. Enlarged spleens can rupture and that can be very dangerous.

Good luck to you and I'm glad you found us!

Thanks Sandi. I appreciate that. I don't know much about this and since my doctor diagnosed me with it less than a month ago, I know very little and am trying to learn as much as I can. I have some minor petechia and slow clotting. My spleen has been enlarged since birth apparently. My doctor (and hematologist) just want to watch that and my count.

See since I don't know much, I figured that since my doctor said I had ITP, well, then I must have it. But no one here really counts me as sick enough so far. So my reasoning for coming here was to try and stop it from worsening, help improve my count and learn as much as possible, however...

I was ripped a new one by Melinda in another thread for knocking people (which I wasn't), so since no one thinks I have ITP except my doctor, I'm probably not coming back, because I'm not "low" enough to be here.

And I do believe that drugs are necessary for some people for various reasons. So let me make that clear. I'm NOT knocking anyone here or anyone who has been helped by them. However, my path right now is to try and help myself naturally. Melinda can't respect that. She got me all wrong. I respect those who use them. However, I am choosing not to use them (as my doctor said that they may one day be necessary) because I don't want all the side effects (and regardless of what anyone says, I believe all drugs have side effects) BUT that doesn't mean they don't have a purpose and can do people good.

Thanks, great forum.

Joe:

Everyone is welcome, and I wouldn't say that you don't have ITP. It's mild so far, and that is a very good thing.

Yes, most drugs have side effects. I can attest to that; I take about 10 prescriptions (not for ITP). The thing is, it's easier to say you won't take any if you're not at treatment level. The symptoms that some people have when counts get low can be very scary and they treat to prevent spontaneous bleeding. That is very rare, but we have had a few people who have had strokes when counts were down. I've been to 3k, and did treat several times when I got to single digits. At that point, you have to take this seriously. Some people also choose not to treat at low levels, but it all depends on the symptoms they have.

Even when my counts were low, I still didn't consider myself 'sick', just a person with low platelets. Please reconsider and stay. We're like a family here and we do have disagreements sometimes. Most of the time though, everyone is caring and sharing.

Thank you Sandi. You are right, my ITP is and probably should be labeled mild. I intend to not let it get any worse if there is anything I can do about it.

If my posts had offended anyone, I'm sorry. Not my intention and if my words were misconstrued, I apologize for not being more clear.

I know that to some, as I've now learned, that my count is "high" amongst others comparatively. But without sounding like I'm on the offensive, I'm here because my count still is not in the normal range. It is lower than the 140-400 that I've been told is "normal". And besides, even though my count is high now, doesn't mean it will always be so. Obviously, those with counts as low as 20K or even lower, didn't go directly from 300 to 20 overnight. I'm sure there was a journey and along the way they were somewhere at where I was and dropped from there. I am here to do whatever I can to stop it from going any lower.

I believe the spleen is enlarged because of the ITP, or were in someway tied together. At least that was my impression from what I was told, but because all of this is new to me, I'm still learning.

Hi Joe,

An enlarged spleen is not normal for ITP. Most literature will say that if an enlarged spleen is found to look for other diagnoses. It's also not normal in ITP to have petechiae at such a high count so I'd be looking for more tests and a better diagnosis.

If nothing more is found than ITP then you have to accept it but at such high counts no treatement is necessary at all. I've not seen anyone gain any platelets by diet or strange medications at all. We often hear of people trying things but it never works. Here's a list of the weird and wonderful tried by people here..

Vitamin C
Vitamin D
Homeopathy
Acupuncture
Meditation
Gluten free diet
Essential oils
Chinese herbs
Physical exercise
Helminthic therapy
Fasting
Bloodwell herbs
Euphorbia hirta
Cayenne pepper
Phycocyanin
Bergamot oil
Colostrum
Transfer factor
Hornbeam
Plantago major
Anamu
Revigor
Goji juice
Blood stim liquescence
Celery
Orange juice
Asparagus
Papaya leaf extract

:side: Hello Joe,
There is no such thing as 'normal' and having a very low count can be seen by some as badge of honour.
I have a count of 24 but have no treatment, yet anyway, as bleeding is not an issue.
You will learn from the posted experiences on these pages that there are a whole range of problems different people face on a daily basis but as Sandi has indicated there is no right or wrong, we are all in the same boat.
Don't be discouraged.
Eric

Thank you.

Hi Joe,

Welcome to the forum.

I can fully relate to your situation.
I'm one of those whose platelet count is not normal but hovers close to 100. Best being 103. Fortunate as compare to many others here who have very low counts. I have not receive any treatment since I was first found to have thrombocytopenia in 2009. My hematologist's take is its probably ITP & adopts a 'wait & watch' approach. Just like you I'm trying to understand & do whatever to stop my count from going any lower. This place has provided alot of useful information by members sharing their experiences either with conventional treaments or alternative treatments. I am grateful to them & Sandi for sharing, helping.

So hang around Joe as we learn & go through this journey.
May your platelet count stays up.

I just want everyone to undertsnd what a "normal" platelet count is. If you put a random 1000 people in a room, and check their platelet count, chances are 980 of them will fall within what is then labelled the normal range.

You can't say there's anything wrong with the other 20 people just by looking at their platelet count. You would EXPCT 2% to fall outside of the normal range, since the very definition of a "normal bell curve" excludes the tails on either end.

I personally have chosen to focus on where doctors think might be the number to start worrying about symptoms. That's what I recommend to others, too. If you choose to eat better or stop smoking or curb drinking...it couldn't hurt. But if anyone's suggested conventional treatments when you're below normal but "safe", it's time to consider a second opinion.

Thanks Lindy. That's why I'm here. To learn. To understand. To act (if necessary). As tamar notes, (just like him, I too) have had below normal counts for at least a couple of years now, and my doctor has given me the "wait and watch" approach, with 6 month interval blood tests. So my fault for not being clearer that he suggested I take drugs now.

I guess when I say I'm refusing drugs, I can say that easily now because I don't need them. I'd like to think I'd be able to say that if they ever did get too low. But I have spent the last 6 months focused on my health, eating nothing but fresh meats and vegetables and detoxing my body from candida and I don't want to ever have to do this again (I'm planning on doing it for 1 year or longer).... and steroids are a big contributor to candida overgrowth.

Joe, I think we are pretty similar, having below normal count (100) for a couple of years.
I go for blood test every 3-4 months. In the meantime I try to have a healthier diet & lifestyle hoping to keep my count stable.

Wondering why would your doctor suggests taking drugs now? Your count is even better than mine. What was his concern? What was your last count like? Any change in symptoms?
Sorry for all the qestions.:blush:

Take care.

Hi Joe,
I just wanted to mention to you that I have had ITP for the last 6 years (last year I had a relapse and my platelets had plummented to 1000). Now, after treatment from last year, they are in the normal range.

But, my husband has had below normal platelets for the last 13 years (range between 120-130 range). He has never had to have any treatment with this range (one time they even went to 111). I do believe his platelets are low because he was a welder most of his life; and, a few years ago he constructed a barn and his platelets when from 190 back down to 111. Additionally, my son's platelets have also stayed in the lower range (between 130 - 150). And, he too became very ill last year with some kind of virus--and his platelets went down to about 119. So overall, it sounds like you don't really need to worry about treating for ITP. You should be fine with your platelets in the range that they are.

Good luck to you,
Dee Dee

I was diagnosed on July 1, 2011. My counts are all over the board. I am currently on a high regement of steriods. I have been taking bthem for four days wait eight days my counts go back down then the steriods again.

I found via Tonic Water can cause platelets to plummete. I drink tonicwater every day mixed with water, at first for leg cramps but I liked the taste so I drink about 32 OZ each day. I stopped drinking the tonicwater almost about 72 hours ago. If this is the cause of my ITP will it go away after the Quinine is out ot my system? I get my blooddwork tomorrow. Can anyone answer my question?

MYCOUNT

ITP will go away if in fact you have quinine-induced ITP. There are certain antibodies against platelets that react when quinine is ingested. If you do not have those antibodies, stopping quinine won't help. I suggest you stop the quinine for at least a few weeks and see if it helps. That would be a very simple fix.

Dee Dee, Lindy, thanks. Sorry, my doctor did not suggest drugs yet. I should have been more clear. I asked what would happen should this get worse since his recommended treatment now was to "wait and watch" or basically do nothing other than to monitor it via blood tests. I was saying I refuse drugs, because I don't want to go on them if I ever did have to and I was looking at it from a worst-case scenario, that they would go down. And when they did, I would find some other way to deal with it besides drugs. I guess I was putting that statement out there now so I could hopefully be strong enough to say it when I did "need" them because I said it now.

My only symptoms are some minor purpura. They are very tiny, less than a millimeter in diameter, and only on my upper arms, and they aren't that many of them. My doctor only found out about it because I go in regularly to get blood work done as part of a semi-annual physical because he wants to monitor my asthma. Which coincidentally is pretty much gone. I barely use my inhalor anymore. In fact, I haven't used it for months. When I was a kid, I was in and out of the hospital for emergencies with it, constantly on prednisone, corticosteriods, inhalors... Now, I can run 15 miles and not need it.

My best guess is that the life I lived, including my diet, alcohol and prescription drug history caused my candida, which led to my ITP. While my diet wasn't poor, it could have been a lot better, I probably drank too much and as a kid, was always on medicine, and the past decade, because of the candida, took too many anti-biotics. I can see how poor diet leads to too much medicine and how too much medicine causes more problems and leads to more medicine.

Hey Joe, you never know with your detoxing effort, taking of fresh meat, vegetables & avoiding unneccessary medication, your next CBC (in 6 months time right?) could show improve platelets count. We just try our best to improve our general health & hopefully it may help.

Good luck!

Joe, it's hard to say what we might do when our platelets go down. It is good to be as positive and prepared as possible; this is a good start. When mine went down to 1000 last year, the doctors at the hospital I was in were really pushing me to take a lot of meds. I did push back and took a wait and see approach. It also helped me to read (and then to correspond) with a member of PDSA (he wrote the story TIC TAC TOE). He kept telling me to "get the monkey off your back". I finally realized what he meant--1) not to take on more than you can handle 2) take care of yourself, and 3) make sure you rest.

By pushing back on the doctors, I was able to do good with just the Decadron pulses (they did want to give me other medications). I, too, do not want to take a lot of meds as I feel I eventually get a bad reaction to the meds; it may take a few weeks--but eventually I start to get a reaction. I really think my platelets came back up this time because I had stopped taking Sinequan which is known to drop your platelets. But, I also went though a lot of stress as I sat in the hospital with the doctors mad at me for not following their orders (plus, they would let me out of the hospital for two weeks).

Just try to take good care of yourself and you will probably be just fine. Keep thinking positive.
Good luck to you!!
DeeDee

Thanks to all for the encouragement. My next blood test is in late November, early December, I can't remember which. I am hoping for the best!