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Old 05-29-2012, 07:12 PM   #1
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Low platelet count... kinda scared

I am 30 years old. I all of a sudden for the last 3 weeks have been getting these mystery bruises on my arms and legs. I went to my doctor about a week ago for some other medical issues and brought the bruises to his attention. He decided to have the nurses draw some blood and they called the next day to inform me that my platelet count was at 10. I think they thought the test was wrong so they made another doctor appt for a week later so today I went in which they had a pathologist do the test manually and the test came back with my platelet count at 5. He decided to start me on Prednisone 20mg 4 times a day, with no answers of what might be wrong. A family member did some research on Topamax that I am on which can cause anemia (bruising) but not low platelet count. So the doctor told me I have to go see a hematologist/oncologist which really scares me because cancers runs in my family. I guess I just wants some answers, I am not a patient person....

 
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Old 05-30-2012, 08:48 AM   #2
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Re: Low platelet count... kinda scared

I was in a similar position about 4 years ago. My only symptom was unexplained bruising, and my platelet count at that time was 23 (normal is 140-415).

I did extensive internet searching and found that the two commonest reasons for low platelets were some type of blood cancer or ITP (immune thrombocytopenia). I also found that blood cancer produces multiple symptoms, abnormal white cell counts, and a feeling of unwellness. The ITP rarely has other symptoms besides bruising. So, if you generally feel well and your other blood test components are normal, there is little reason to worry this is cancer.

There are other reasons for low platelets, of course, but few are as serious as blood cancer and many of them are reversible. Try not to worry about that for now.

Also, don't worry that you're being sent to a hematol/oncologist. Hema's are usually primarily oncologists as well as blood specialists. Not all of their patients have cancer. I didn't realize that myself until I needed to see one.

Wishing you good luck.
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Old 05-31-2012, 10:03 AM   #3
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Re: Low platelet count... kinda scared

Well since my last post I have gotten a couple more horrible bruises. I have been on the Predisone since 05/29/2012 and my sister which works in the medical field was deeply concerned about me so she told me I need to go to the ER and try to see what they would say because of the platelet count being that low. Well the did another test and my count is up to 25 now. And they refuse to do a blood transfusion on someone that their platelet count is above 20. So I still have to wait til Friday for for my specialist appt...And the doctor that I saw thinks that it is in fact ITP.

 
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Old 05-31-2012, 01:22 PM   #4
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Re: Low platelet count... kinda scared

If it is ITP, a transfusion won't help. This is an autoimmune disease in which autoantibodies cause the spleen to destroy platelets faster than the bone marrow can produce them. A transfusion will just increase the antibody activity and will not increase the platelet count for longer than a few hours.

If it is ITP, I can tell you... There are a LOT of worse things to have. My own case only needed treatment once in more than 4 years, and that was a very low dose of prednisone. A count of 25 is actually perfectly safe - if certainly not ideal - for most people.

Hang in there! You're going to be fine.
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Old 06-01-2012, 05:18 PM   #5
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Re: Low platelet count... kinda scared

Well results from the doc.... the did another CBC my platelet count is now up to 30. Continue taking Prednisone 80mg a day. Come back in a week for another CBC. He did diagnose me with Chronic ITP. He looked through all of my CBC's done since 2004 and they have all been low not as low as 5 but still low so it has been an on going issue for 8 years. Then a week after the 8th he wants to do a follow up appt to see how I am doing. So in a week I have gone from 5 to 30. Do you suffer from fatigue and feeling very weak and headaches? because I am having that problem A LOT!!!

 
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Old 06-01-2012, 10:10 PM   #6
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Re: Low platelet count... kinda scared

Many ITP patients report fatigue when their counts are very low. I think I remember reading that headache can be a symptom as well. I never had any symptoms except at times large, dark bruises and petechiae. Oddly, the bruises didn't closely correspond to my counts. I've had bruising in the 30s, but none at 4, for example. Would you say that fatigue and headache are more recent symptoms for you? ... Because those can be prednisone side effects as well as symptoms of the disease. Your dose of 80 mgs is very hefty; no doubt you'll feel the effects of that pretty strongly before much more time elapses.

Wow... Ongoing low counts for eight years!? Weren't you advised about low counts during all that time? My own MD missed my low count during two successive annual physicals. It wasn't until I began having large, purple/black bruises for no reason that I looked up my old bloodwork and discovered that one count was 79, and the next year - when the bruising started - it was a mere 33. A repeat count at that time was so low, it didn't register a result at all, yet my MD told me all was "perfectly normal". That's when I self-referred to hematologist who made the diagnosis.

As I mentioned, my ITP was treated with prednisone only once in the 3 1/2 years since diagnosis. Following a viral illness, my count slipped to 4, and the hema insisted I take a low dose of pred, only 20 mgs a day. It quickly and significantly raised my count into the 120s, but when I tried tapering off, it dipped too low too fast. So I had to stay on that low dose for the next 10 months; counts stayed in the 60s-70s, which was fine. At such a low dose, pred side effects were non-existent. I have a conservative hema who doesn't insist on treatment for counts above 10. Other hema's use 30 as the cut-off point.

As of now, I seem to be in a mini-remission. Counts have been in the 120 area for about 1 1/2 years. Still not "normal", but normal enough to be no problem.

You need to know that, although the causes of ITP aren't totally understood, they often can be environmental or dietary. Frequent ingestion of tonic water is a common cause that is easily reversible. Heavy aspirin or other NSAID use can lower platelets. Better to use acetaminophen (Tylenol) for pain relief. Chemical toxins, heavy air pollution, contaminated water... All can be triggers for ITP.

Familiarize yourself with the signs of risky bleeding so you can report any that may occur. Most people with ITP experience spontaneous bruising. Other signs of bleeding include: petechiae (pe-TEEK-ee-ay), which are tiny red dots on the skin caused by broken blood vessels or leaks in a capillary wall. If your platelet count is very low you may have other bleeding symptoms including blood blisters on the insides of your cheeks, nosebleeds, or blood in your urine or stool. In general, the more bleeding
symptoms you have, the lower your platelet count. Rarely, a brain bleed can occur with very low counts, so be aware of the signs of stroke so you can immediately seek help should they occur to you. They are: Headache that won't go away, dizziness, vomiting, unusual sleepiness, confusion, slurring of speech, eyes not moving together, weakness on one side of the body, stiff neck or back, seizures, and inability to see or hear. Again... Brain bleeds are rare occurrences with ITP; just be aware of the warning signs.

I hope the prednisone will work quickly for you, so that you can begin the tapering process to a lower (or no) dose.
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Old 06-03-2012, 08:04 AM   #7
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Re: Low platelet count... kinda scared

When the hema was going thru all my CBC's since 2004 they have never been higher than 120 as far as a can remember they have dropped to 76, 68, 50, 20. So that is why he said I have the Chronic ITP. Like I said before I started having the bruising about 2 weeks ago I think I am now up to 20 bruises on my body and they are not small. I think the biggest one that I have is from them checking my blood pressure almost a week ago and it is ugly lol. I do have a little of petechiae on my stomach but it is going away. I have been having fatigue (which I did talk to the doc about and he said prednisone does not cause fatigue, so he thinks it is all the infections I have been having to fighting off) for the last three months but it has been getting severely worse since I started the prednisone where I literally feel like I my body is going in crash mode if that makes any sense. It starting to get the point I have to limit my driving, I already have a problem with concentration and now it has gotten worse, I am having stiffness on my left side of my neck but I dont know if that is from my sun burn. I am constantly complaining to my room mate about being weak, barely being able to hold myself up. For a couple hours after I take the meds I think I am ok but it seems to happen later in the nite.

 
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Old 06-03-2012, 10:03 AM   #8
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Re: Low platelet count... kinda scared

The list of side effects for prednisone is very long. Have you checked it? The one I consulted does indeed include fatigue, as well as headache, muscle weakness, confusion, infections, and a host of other things. (If you're already prone to multiple infections, be careful of that prednisone making things worse.) Now, it's very true that any of those symptoms can be caused by something else entirely; but if one of them begins or worsens only since you've begun to take prednisone, it's probably from the prednisone.

Again, your dose is about as high as it can be prescribed. You would be a rare person if you didn't have numerous side effects from such a dose.

Has the MD said when you might be able to start tapering that high dose?
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Old 06-03-2012, 01:11 PM   #9
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Re: Low platelet count... kinda scared

he wants to me at least stay on the 80mg a day til they do another CBC on the 8th. I have not checked out the side effects of the med that I am but that gives me something to do today I want to thank you for all the help you have given me so far through this...

 
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Old 06-03-2012, 01:46 PM   #10
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Re: Low platelet count... kinda scared

Whatever I can do to help...
Wishing you lots of platelets soon!
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Old 07-01-2012, 06:09 PM   #11
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Re: Low platelet count... kinda scared

Quote:
Originally Posted by Babybluez2dye4 View Post
I am 30 years old. I all of a sudden for the last 3 weeks have been getting these mystery bruises on my arms and legs. I went to my doctor about a week ago for some other medical issues and brought the bruises to his attention. He decided to have the nurses draw some blood and they called the next day to inform me that my platelet count was at 10. I think they thought the test was wrong so they made another doctor appt for a week later so today I went in which they had a pathologist do the test manually and the test came back with my platelet count at 5. He decided to start me on Prednisone 20mg 4 times a day, with no answers of what might be wrong. A family member did some research on Topamax that I am on which can cause anemia (bruising) but not low platelet count. So the doctor told me I have to go see a hematologist/oncologist which really scares me because cancers runs in my family. I guess I just wants some answers, I am not a patient person....

 
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Old 07-01-2012, 06:28 PM   #12
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Re: Low platelet count... kinda scared

I was wondering how it turned out for you? I type this while sitting in the hospital after going to the ED yesterday. For the last few weeks I also had excessive bruising, petechiae, and a very heavy menstrual cycle. I had made an appointment to see my doctor but hadn't been yet. Yesterday while driving to work suddenly got very light headed and had a heavy pressure behind my left eye. I got quite nervous considering the other symptoms I had been suffering so returned home and had my husband take me to the hospital.

While en route I suffered severe numbness and tingling on the left side of my face and down my arm to my fingertips. I was scared I was having a stroke or something. While at the ED they took blood and my platelets were a 3. They also did a CT scan to rule out brain bleed. Thankfully that was clear. I was transported by ambulance to another facility over an hour a way who was more equipped to treat me.

I was given a dose of prednisone before transportation and my next blood levels had platelets at 4. After extensive intake lots of questions about medical history etc... And quickly ruling out that a blood smear showed no sign of unusual cells, they began me on Intevenous imunoglobin. Next blood work I was up to 15. That was at 5 am this morning. They have now diagnosed me with ITP. Since there is no other apparent underlying cause.

I feel a bit uneasy about all of this especially since I have had plenty of time over the last hours to read about IPT and I haven't been able to find any others with such low count as myself unless there was a cause like leukemia or hepatitis or HIV. All of these have been ruled out btw and I have always been relatively healthy except for a short instance 15 years ago with another unexplained auto immune disorder. I has swelling redness and heat from my joints, but even after extensive tests there was no known cause.

I would be curious to hear others thoughts on this.

Last edited by Zurayah; 07-02-2012 at 04:03 AM.

 
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Old 07-01-2012, 10:15 PM   #13
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Re: Low platelet count... kinda scared

Well a lot has happened since my last post. and I dont even know what I last posted lol. So I will just tell you the most current info. I stayed at 32 for about two weeks and I was taking predisone 80 mgs a day.. then the following week I dropped down to less than 1 so he made a emergency IVIG injection, a few days after that I got a cbc done I was at 98. Then I was having major fatigue issues at work, falling asleep at work the same symptoms I was having when I dropped down to less than 1. So I called my doc and asked what he wanted me to do and he told me to come in and get a cbc done. I was at a high 220. So they thought the IVIG took... he lowered my predisone to 60 mgs. A week later I got rechecked and I dropped down to 33... doc of course did no like that number so I had a few choices Retuxin (SP) or meds that may cause scar tissues on my bone marrow or surgery to remove my spleen. I told him I wanted to go full force and just remove the spleen. So now I have to get a bone marrow biopsy which is scheduled on 07/06. and then may have to do another round of IVIG to raise my platelet level so they can do the surgery. If you have any question just let me know

 
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Old 07-03-2012, 07:01 AM   #14
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Smile Re: Low platelet count... kinda scared

Thanks for your response. I was released from the hospital yesterday after having 3 treatments of the ivig, my platelets were at 80. I am on 65mg of prednisone daily for the next week when they will do another cbc and see how I'm doing at that point hopefully will taper off. So now its just a waiting game to see how I do.

I wish you luck with you upcoming tests. Let me know how it goes. Wishing you lots of platelets!

Last edited by Zurayah; 07-03-2012 at 08:56 AM.

 
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Old 07-03-2012, 08:51 AM   #15
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Re: Low platelet count... kinda scared

IVIg is very rarely a permanent fix. It's an emergency 'rescue' treatment that almost always works for only a short time. Just so you know.

Please do some more self-education before having your spleen removed! At least consult another hematologist or two before doing it. Not all of them keep up-to-date with the latest ITP information; yours may be one of them. Spleen removal for ITP is nowadays the very last ditch resort. It only works to permanently raise the platelet count about half the time in younger people, even less than that in older ones. You need your spleen for other body functions. It isn't the cause of your ITP; it's the victim of it.

You can live quite fine with a count above 30. Truly, you can. There is no need for such aggressive, risky treatments if your count can be maintained there. Again, I urge you to delve deeply into this before you undertake such a drastic course of action. I learned volumes and got much needed reassurance about ITP from the Platelet Disorders Support Assn.
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