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Old 07-22-2008, 11:10 PM   #1
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Downward Trend in Platelet Count

My platelet count has been falling over the past 5 years. The results of the last five tests I've had are as follows:
May 03 - 228 K
Oct 03 - 249 K
Mar 06 - 156 K
Jun 07 - 79 K
Jul 08 - 51 K

Over the past 4 months or so, I've had periodic swaths of petechiae across my chest, abdomen, thighs. I've even noticed them on the soft tissue in my mouth at times. These appear where clothing is tight, like under bra straps and waistbands ... but also appear on open areas of skin. Some individual dots can be as large as 1/8" in diameter. There are many smaller ones on my lower legs. There have been alarming-looking dark black/purple bruises that were not the result of any injuries. I've had unexplained nosebleeds on two occasions. As dumb luck would have it, I had no petechiae on the day of the last CBC; so even though I told my MD about them, he sort of shrugged it off since there was nothing for him to examine. I received my lab results and his comments in the mail today. His recommendation is to have a repeat test in a month. He wrote, "I think it will be normal." I'm not as sure as he, given the downward spiral.

Now the thing is... I already have one autoimmune disorder, so my risk of having others is increased. I'm thinking ITP. What do you think my odds of having it are, based on these factors?

Should I press for more testing of any kind, or is it safe to just keep watch on the count for the time being?

Last edited by midwest1; 07-22-2008 at 11:12 PM.

 
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Old 07-31-2008, 09:20 PM   #2
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Re: Downward Trend in Platelet Count

Quote:
Originally Posted by midwest1 View Post
My platelet count has been falling over the past 5 years. The results of the last five tests I've had are as follows:
May 03 - 228 K
Oct 03 - 249 K
Mar 06 - 156 K
Jun 07 - 79 K
Jul 08 - 51 K

Over the past 4 months or so, I've had periodic swaths of petechiae across my chest, abdomen, thighs. I've even noticed them on the soft tissue in my mouth at times. These appear where clothing is tight, like under bra straps and waistbands ... but also appear on open areas of skin. Some individual dots can be as large as 1/8" in diameter. There are many smaller ones on my lower legs. There have been alarming-looking dark black/purple bruises that were not the result of any injuries. I've had unexplained nosebleeds on two occasions. As dumb luck would have it, I had no petechiae on the day of the last CBC; so even though I told my MD about them, he sort of shrugged it off since there was nothing for him to examine. I received my lab results and his comments in the mail today. His recommendation is to have a repeat test in a month. He wrote, "I think it will be normal." I'm not as sure as he, given the downward spiral.

Now the thing is... I already have one autoimmune disorder, so my risk of having others is increased. I'm thinking ITP. What do you think my odds of having it are, based on these factors?

Should I press for more testing of any kind, or is it safe to just keep watch on the count for the time being?
Midwest, hi again. May I ask what your white blood counts and red blood counts were on these same dates? If they were normal, GOOD!

Search Thrombocytopenia on Wkped-ia, if you haven't already found it. Scroll a little below halfway down to the description of ITP. Says under 50,000 you should be tested regularly. I assume you are seeing a hematologist?

If all your counts are falling, I have considerable experience with this with a relative if you would like any further insight. If only your platelets are falling, I haven't a clue what is causing that, but I'd be sure you are seeing a hematologist.

One other question, have you by any chance experienced a number of very stressful events in recent years?

Last edited by ese9264; 07-31-2008 at 09:33 PM. Reason: Removed incomplete URL for thrombocytopenia on Wikipedia

 
Old 07-31-2008, 10:27 PM   #3
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Re: Downward Trend in Platelet Count

Hi again yourself! Thanks so much for responding!
WBC was 6.0 (limits 4.0 - 10.5)
RBC was slightly high, 5.25 (limits 3.8 - 5.10)

I am not seeing a hemotologist; this is all new to me, and I have no diagnosis as yet. I have not been under undue stress at all. You may already be aware that I have autoimmune hypothyroidism, but it's well under control, and I am otherwise healthy. According to the info I found at platelet disorder site, the thyroid disease puts me at greater risk for ITP, which also is autoimmune in nature. That's my self-diagnosis at this point.

I will be calling my doc for a repeat CBC and an appointment to talk this over. I have taken photos of the bruises that have appeared in the last few days, in case I have none when I go in again. I won't let myself be dissuaded from describing these issues to him as I was at the last visit.

Do you know if there is a specific antibody test for ITP? Are there other tests for it besides just the CBC?

I really appreciate your help and knowledge about this.

Last edited by midwest1; 09-05-2008 at 04:56 PM.

 
Old 08-01-2008, 08:11 AM   #4
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Re: Downward Trend in Platelet Count

Wow, great WBC and RBC counts, so your bone marrow is super healthy and likely pumping out plenty of healthy platelets, too.

My husbandís bone marrow deteriorated and stopped producing WBC, RBC and finally platelets so my experience is in an entirely different area than what you are experiencing.

I will say that your platelets are falling like a rock, way below low normal of 140,000, and you donít need any bruises for your doctor to see this if he has a brain in his head.

In my experience, doctors are inclined sometimes to do nothing if they donít have the training to know what to do.

You need to get yourself to a specialist, and probably know better than I what type specialist deals with autoimmune disorders. Itís likely your spleen is taking out your platelets, right? Misprogrammed and mistaking the platelets for a foreign body.

I believe I read of one woman in one of these threads who goes on short courses of steroids (not continuous) to stop the spleen from doing this for awhile so her platelets can recover.

By the way, my husbandís platelets got as low as 7,000 when he was still to all appearances healthy (though getting regular RBC transfusions). At that level he was in danger of bleeding out from within the brain, or anywhere else. He never had any bruising or bleeding, so you shouldnít feel you have to show bruising to prove your counts are low to your doctor!! He has his head in the sand, and needs to get you to a specialist pronto. You donít want to start dealing with this when you platelets get down another 20 or 30 thousand.

A little off the subject of this thread, but I think my Armour overdose was a great wake up call that I need to monitor my t3, t4 and tsh a lot more carefully. Every day I have a period sometime in the afternoon when I just crash and have to go to bed, or drink a Red Bull or two. Later on I come back to life. Itís not lack of sleep, as I get plenty. Iíve been prone to depression for years and take Lexapro, though my life has absolutely nothing to be depressed about. I can only think these are caused by a blood chemistry/hormone imbalance.

If my internist canít get things straightened out, I am going to ask for a referral to an endocrinologist. Iíve long had symptoms that could be adrenal exhaustion or thyroid problems, and high time I found out! I am the picture of health, and perhaps you are too, so not looking or acting sick we may not be taken as seriously as more obviously ill people filling the doctorsí waiting rooms.

Keep me posted what is happening, OK? And be tough with this doctor!

 
Old 08-01-2008, 01:26 PM   #5
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Re: Downward Trend in Platelet Count

Good to know what the WBC and RBC indicate. I'm pretty good at thyroid stuff, but have no clue about all of this. I've been pretty sure I don't have anything drastic, like leukemia, because I feel fine. ITP seems to make the most sense to my limited way of thinking/researching.

To his credit, my doc is Da Bomb at treating my thyroid. He is a homeopathic MD, the kind of alternative doc that I never in my dreams would have consulted before my thyroid went south; but when conventional MDs wouldn't even consider thinking outside the TSH/Synthroid box, I knew I had to defy convention if I wanted to get treated. That has worked out well. But I could tell from the beginning that the man has his limitations. I will have to consult a specialist of my own choosing, I think. That's hard to do when one has no idea who's good in the field. The Yellow Pages really doesn't cut it when it comes to these things.

The treatments for this disorder really scare me! Steroids, surgery... eeks. It's my hope that the "watchful waiting" that the PDSA mentions will be an option for me. I've also heard about a vitamin C and potassium regimen that has anecdotally helped some people to increase their platelets. Do you have any knowledge about that?

Getting taken seriously by an MD... Isn't that a tough thing to do? When we ask too many questions, we're taken for hypochondriacs. When we say too little, we are misunderstood as having no complaints and to be perfectly healthy. It's a lose-lose all around. I really hate doctors.

Thanks once again for such a detailed explanation. It helps loads. I'll update after I see my doc and get new results.

 
Old 08-01-2008, 07:42 PM   #6
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Re: Downward Trend in Platelet Count

That's great that you have someone who is really good at treating thyroid. I continue to feel better each day, so this may be a simple matter of getting the precise dose by testing every six weeks or so. Hope so.

No, it really doesn't appear to me that you are in any danger of a blood disease like leukemia, myelodysplasia, or any of that bone marrow stuff. If it were me I'd do just what you are doing... research the heck out of your symptoms on the internet and find out also what type of doc to go to.

I have no clue how to increase your platelets via supplements. And I researched my husband's myelodysplasia on the internet for years and years. Half my hard drive was taken up with saved research, but I couldn't do a thing to halt the relentless downward progression of all my husband's counts. I did have a very clear pattern of his white cells falling seriously from stressful events, then recovering but never back to where they had been before the event. I've also seen it in myself. In 1993 we got the diagnosis of the terminal disease for my husband in the summer and then our 10 year old son had open heart surgery for endocarditis (staph infection within the heart) in December. My whites crashed, and crashed again the three years after my husband's death. Later they recovered fully to previous levels and stayed recovered. But you don't have that happening.

Here's a suggestion for handling doctors I use which should make both you and the doctor more comfortable and efficient in dealing with your problem. Write everything down in a clear logical outline for discussion, and present it to the doctor saying these are the things you would like to discuss. It will keep both of you on track, and you won't leave realizing there were several important things you spaced out asking. I think it really helps in being taken seriously by the MD, too.

Best of luck, and I'll hope for a reversal in your platelet trend!

 
Old 08-02-2008, 08:39 AM   #7
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Re: Downward Trend in Platelet Count

I'm so sorry for the loss of your husband. I hope your son is now healthy and happy. You've certainly had your share of terrible health-related stresses.

I'm glad you mentioned the online encyclopedia. I just looked at it and found a mention of the possibility of H-pylori infection being implicated in ITP. I looked up studies on the connection at PubMed and found lots there. I'll keep digging around until I find all the treatment possibilities, not just the most common ones that are the least appealing to me.

I want to be armed with lots of questions when I see my doc or the inevitable specialist in my future. Some people are content to leave everything up to their MDs; I'm the kind who researches everything to death and who never takes advice without confirming in my own head that it's the right way to go. If I had simply taken my former MD's opinion about my thyroid disease, I'd still be untreated and suffering 4 years later, I'm sure.

Your support is comforting. Thanks once more.

 
Old 08-26-2008, 12:06 PM   #8
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Re: Downward Trend in Platelet Count

Ese9264... Are you still around?
If not, I hope someone else can help.

I have the report from a new CBC. I won't list all the components, just the ones I think are pertinent about platelets:

The report is titled "CBC With 'Differential/Platelet'", in case that matters.

Below WBC (5.4 w ref. range 4.0-10.5) it says, "White count and platelets may be decreased due to fibrin strands in the sample".

The platelet result has been left blank. Below that it says, "Unable to perform accurate platelet count due to platelet clumps. Platelets appear decreased on slide."

My doctor's comment on the enclosed note says, "Your blood count is entirely within normal limits". I'm not buyin' it. Am I wrong?

I haven't talked to him directly. Just can't help but be disappointed in him, based on the little I know at this point. Am wondering if it's worth my time to schedule an appointment or just to seek a hemotologist's advice. Any advice would be more than welcome.

 
Old 08-26-2008, 09:34 PM   #9
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Re: Downward Trend in Platelet Count

Definitely see a hematologist. And I'd get another blood test at a different lab, too. Was this a major lab company, like Quest, or done in a local hospital or clinic? The latter could mean an unskilled technician. This doc may have been good on thyroid, but this was the wrong answer in your situation, for sure. I believe there are ways to un-clot platelets, too, so they can be counted. Keep me posted!

Last edited by ese9264; 08-26-2008 at 09:35 PM. Reason: misspelled word

 
Old 08-26-2008, 10:17 PM   #10
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Re: Downward Trend in Platelet Count

I'm so relieved to see your reply. I can't talk this stuff over with DH. He doesn't understand anything medical, and of course doesn't want anything to be wrong with me; so if I told him I'm concerned by it, it would just scare him unnecessarily.

My previous tests were done by Quest. The last two were done at LabCorp. Doc must have switched for some reason.

I could accept lab error. What has me perplexed was that note! Why would he say the results are "entirely normal" when the test for the main problem wasn't even completed!

I've pretty much decided I am going to schedule an appointment for a talk with him, if for no other reason than to let him know I don't appreciate his trying to slip one past me. And to see if he knows a good specialist, so I'll have a place to start a search. (Guess it'll cost me a $25 co-pay, which knots my knickers. Whatever.)

Will certainly be back for more advice after I get more info. Thanks again.

Last edited by midwest1; 08-26-2008 at 10:22 PM.

 
Old 08-27-2008, 07:07 AM   #11
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Re: Downward Trend in Platelet Count

If I remember correctly, this guy was good on solving your thyroid problems, wasn't he? Why not just keep a good relationship with him on that.

This blood business just doesn't seem something he's very competent in. I would NOT ask him for a reference. He won't want someone to show him up for being ignorant, right? I googled hematologists, Springfield, MO, and there are a lot. The job you have is to find who is best. Maybe the one who is hardest to get in to see because everyone wants to see him/her! I prefer a referral from a friend who has had a good experience with a particular kind of doctor. So maybe you have to ask around, particularly if you know anyone who has had a blood disease. Good luck. I hope to hear by tonight that you have an appointment with one of the top hematologists in Springfield!

 
Old 08-27-2008, 10:14 AM   #12
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Re: Downward Trend in Platelet Count

Me again... The Pest.

You made good points, so I'm researching hematologists on my own today. Don't know a soul with a blood disease, so I started with my insurance provider list. (I'm in St. Louis, BTW.) Almost all of the board certified hematologists in the category list oncology as their speciality. Is that typical? I don't see any that concentrate on blood disease other than cancer-related. If you have a comment to make about that, I'm all ears. Otherwise, I'm guessing I'll just have to start calling offices to see what they say.

 
Old 08-27-2008, 12:19 PM   #13
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Re: Downward Trend in Platelet Count

I think I would just call who you decide looks good, talk to the receptionist and tell her exactly your problem. That you got a lab report that said the platelets were not readable, and you think your blood should be rechecked by Quest or a lab the hematologist prefers. And that you have had a precipitous fall off in number of platelets over time. They will tell you, I would think, whether to come in to see them or whether you should go to another regular doc, an internist or family medicine practitioner for the next test. Just don't go back to your nice thyroid doc!

 
Old 08-28-2008, 11:07 AM   #14
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Re: Downward Trend in Platelet Count

I have an appointment for next Tuesday, the 2nd. That's very soon ... hope it doesn't mean he's the worst hem'ist in the county. I do have another lined up in case a second opinion is needed.

When I asked the receptionist for an appointment, she asked whether my primary had referred me. I said no... that my insurer doesn't require a referral. She said that they don't normally schedule appts for people unless a primary recommends it. I then told her how my platelets were flagged low last year and again this year. Told her the repeat test didn't result in a count at all, but that my primary said all was "completely normal". Then I asked, "Do you see my dilemma?" She told me to hold on for a few seconds, then promptly transferred me to the scheduling person.

When I think back to the time I was so shy that I would ride blocks out of my way instead of asking the bus driver to call my stop ... If I were still that way and unable to speak up for myself, where the heck would I be now?

Will update after Tuesday.

 
Old 08-28-2008, 10:03 PM   #15
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Re: Downward Trend in Platelet Count

PERFECT! You did good. You do have to be assertive in a nice way. I spent the whole day working on thyroid info. My doc is out until Tuesday, but I got a physiciansí assisant to order a whole panel of TSH blood tests which I will get a blood draw for tomorrow. When my doc gets back, the results will be on his desk. Hee hee! I will keep my fingers crossed for you. Youíre on the right track now, I feel. Really great you even have a second opinion back up scheduled!

 
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