New Here, Well Read, Not Sure what To Do or Think

Hello,

I'm new here. Here's my situation as briefly as I can make it: I am 60 yr. old while male. Have had fibromyalgia 15+ yrs. and also general anxiety disorder for about 40 yrs. I have studied medicine 45 yrs. although did not become a doctor. No diseases other than the fibromyalgia. I don't have any symptoms of thrombocytopenia other than my platelet count, the past year or so has bounced monthly up and down form normal (150-170,000 range to as low recently of 94,000. My doctor and a hematologist have done all the possible blood studies including peripheral smear, cytometric flow study, RH panels, and auto immune tests, etc. Also an abdominal ultrasound to check spleen & liver. I take no meds that are known to cause a platelet drop in some people. No family history of it. The fibromyalgia and anxiety disorder are my main issues.

The very experienced and respected hospital pathologist who did the manual cytometric blood flow testing and report came back and implied the only thing he could think of, given all my other blood cells and sub-cell types are normal in size, number, color and count, was that I could have "idiopathic mild thrombocytopenia, due to chronic illness." Of course most people consider fibromyalgia an autoimmune disease or close to it anyhow. And the anxiety and high stress for 40+ years of course suppresses my immune system I know.

So without ANY symptoms of ITP like easy bruising, easy bleeding, prupura, etc., I and my doctor are just monitoring things monthly. I have NO fatigue or other symptoms of anemia or ITP. I have aches and pains I have had 15+ yrs. due to the fibromyalgia, and am very sedentary due to it. I am very deconditioned, but my heart is healthy and has been tested. I know being sedentary can cause some issues with ITP. I have mild venous insufficiency in my right leg, but the vascular surgeon said "No big deal for a sedentary 60 yr. old" and has me wearing 15-20 mild compression socks. That's it except for rosacea on my nose (mild and in remission now) and and also dental problems due to age and lazy about flossing etc. over time. Root canals! Anxiety producing for sure for me. Also money worries.

No family history of any blood disorders. Except for the off and on mildly below normal platelet count, all my lab work ups have been 100% normal, from reticulocyte studies to double stranded DNA antibody tests. I've had everything but a bone marrow biopsy, which both my GP of 25 yrs. and the hematologist said would be "overkill" given all my other tests and lacking other symptoms as well as probably normal and painful.

Any comments, questions, suggestions at all? :S I personally think stress and the fibromyalgia are causing this, as they have caused other things to be abnormal off and on over the years - the combination can give a person some very odd symptoms and affect their entire body, including muscles, organs, eyesight, blood and urine tests, etc.

I joined PDSA because even though I don't have this technically even all the time, I think it is a very worthwhile organization, and I want to help others, even if there is not much more than support and reassurance for me here. That can mean a great deal!! I am open to any questions or comments.

Happy Valentine's Day to all the women and men here, by the way.

Thanks very much for reading.

circawdm

i would say that you seem to have some issues, but given that 94k is your lowest count, itp is not one of them.

Welcome to the board and to PDSA. I think your doc is right that you have mild ITP, which typically is only treated if it causes symptoms. I think the occasional monitoring that you are doing is the appropriate response.

Keep in mind that there is a difference between a normal platelet count and a safe platelet count. Your count has stayed safe, so don't fret too much that it's not in the normal range.

It wasn't my intention to come here and sound so miserable and afraid of what my up and down platelet count is when so many of you have much more serious and diagnosed ITP and other things and are on medications, transfusions, etc. to prevent internal bleeding and much more serious medical emergencies.

Thanks for your reply. I was hoping someone (patient, doctor, or perhaps someone with a very similar clinical picture as mine) might suggest something else then, given all the exclusions of other causes for "lower than the normal range" platelet count, even though even I know at this point the only thing it has in common with ITP is the up and down platelet count. And of course the < 150k count thrombocytopenia diagnosis.

PDSA I thought, represents people with all kinds of issues that can cause an up and down (or simply up or simply down) platelet count, whether it is from the 120-150k range I have stayed in for the past year or so until recently when I dropped to 94k, or perhaps someone else with what had been diagnosed with simply idiopathic thrombocytopenia, without purpura or very low counts or the other common symptoms or blood test values that present with ITP.

If I should have put this under a broader section here in the discussion boards, I am sorry. It is my first time here. I'm just looking for possible answers, feedback, suggestions and support like alot of others here. Having had fibromyalgia for 15+ years has been no picnic (on disability in fact for it) and I am hoping that whatever is causing the platelet counts to be up and down, even in the very mildly low range, is associated with that and high stress, versus something very rare or undiscovered which would make my life have less quality than it does at this point.

Thanks for your reply.

DRT

DRT I don't think you have to apologize for anything. You have a legitimate concern/questions.

From what I gather your count has been 150-170K and then you had a 94K - right? Was that one time? Was a count done after that 94K one, if so what was it?

When I was in "remission" for 8+ years with a count that went between 85K and 125K I only had a blood test once a year.

What I'd do is keep an eye on it. Maybe this has been normal for you all along and you just didn't know it. Also a platelet count is going to flucutate - ITP or no ITP.

Hi Melinda,

Thanks. I forgot to mention, in my reading and also from what my GP has said and we have found, that with people who have below normal or even normal (especially low normal) pt. counts that the in office automated lab equipment often undercounts as a result of clumping, poor calibration or problems in collection.

Ten days ago I had a test and my pt. count was 112k...lowest I had been to that point in time. My doc sent it to the hospital to be manually counted and looked at, and they came back with 152k! :blink: We have sent this last 94k count sample to the hospital path lab also, not trusting the in house machine on platelets so much (although my doc says it is only with the platelets it seems to have problems - often with people on the lower end of the norm scales). We also asked for a peripheral smear to be done again.

If I am lucky, it will come back up above 100k again, and if the smear looks normal, we will just continue to monitor it. Between having IBS (similar to IBD) and fibromyalgia, and considerable stress, I think the doctor will say some suppression of the platelets is to be expected. In that case it would shift from an ITP dx. to one of Pseudothrombocytopenia. And that I can certainly live with, and we'll just monitor things with CBC's as we have been every 2-3 months or so.

Thanks for your comment

PS: How does one create a post "signature" here? I have looked at profile editing and cannot seem to find where to do that. :blush:

DRT

DRT:

It seems to me that you do have some autoimmune issues and can add mild thrombocytopenia to the list. Honestly, I wouldn't worry about it as long as your counts are staying above 50 and wouldn't expect you to have many symtpoms, if any, with those counts. You may have a small amount of antibodies, not enough to cause havoc but enough to cause a slight drop. Have you ever had an antibody test? It wouldn't confirm or rule out ITP, but would add some weight to the diagnosis.

I have myalgia due to Lupus and can agree the muscle pain is no picnic. It's hard to control. I have found that Magnesium helps as well as Guaifenesin, although I do have to limit the Guaifenesin because of side effects. Have you tried either of those?

Oh, I should mention that automated counts are not perfect....you are right about that. They are set to count platelets that are a specific size, and do not count platelets that are larger or smaller than normal.

Sandi what side effect of guiafenesin?

"If I am lucky, it will come back up above 100k again......that case it would shift from an ITP dx. to one of Pseudothrombocytopenia. And that I can certainly live with, and we'll just monitor things with CBC's as we have been every 2-3 months or so."

The thing is DRT you can live with an ITP diagnosis - I've done it for almost 21 years There are others here who have lived with it longer than I have - you do what you have to do.

For your sake I hope the smear looks good and your count is up there!

DRT, if you go to the PDSA home page, you'll see a link that says "Now Available: New International Consensus Report on the diagnosis and treatment of ITP". If you navigate to that article, in the introduction you'll see that a diagnosis of ITP is now NOT recommended when platelets are above 100K (not the 150K that lab reports say is "normal"). That was my point in my post above...not being "normal" should not necessarily be a cause for concern.

As with many things that can be measured numerically, platelet counts happen to have a normal distribution and create a bell curve when graphed. The scientific community has chosen 2 std deviations from the mean as "normal", but by doing that, they are guaranteeing that there will be some people at either end of the curve that will be labeled "abnormal" even though there's no cause for alarm. Just some food for thought, which I hope will be helpful.

Melinda:

Well, I can't take it on a work day. It makes my mind race and I speak without thinking and fly through my work without thinking - ha, sort of like Prednisone. It makes me feel like I'm on a triple espresso high and if I take it two days in a row, you can double those side effects. It does the same to others that I know, so it's not just me. I take it on weekends if I don't have to do anything but housework.

tamar wrote:

DRT, if you go to the PDSA home page, you'll see a link that says "Now Available: New International Consensus Report on the diagnosis and treatment of ITP". If you navigate to that article, in the introduction you'll see that a diagnosis of ITP is now NOT recommended when platelets are above 100K (not the 150K that lab reports say is "normal"). That was my point in my post above...not being "normal" should not necessarily be a cause for concern.

As with many things that can be measured numerically, platelet counts happen to have a normal distribution and create a bell curve when graphed. The scientific community has chosen 2 std deviations from the mean as "normal", but by doing that, they are guaranteeing that there will be some people at either end of the curve that will be labeled "abnormal" even though there's no cause for alarm. Just some food for thought, which I hope will be helpful.

Thanks Tamar,

I agree with that, which is a large part of one of the things that I personally feel needs to be changed with conventional "Western medicine," where alot of things seem to be not only very "black and white," but where there is not much room for looking at things more "creatively" or outside the box. It reminds me of the psychiatry field of medicine, where it used to be the majority of them were taught various kinds of "talk therapy," and they used it in 50-60 minute sessions with their patients, in addition many times to prescribing meds.

These days, the people I know who have gone only to a psychiatrist (versus a psychologist, MSW, etc.) to get help with depression, anxiety or other issues, are quickly assessed and given medications, usually without a referral to someone who will also talk to them and help work on the causes, versus mask the symptoms with drugs. And with the exception of people with true psychoses, (bi-polar disorder and schizophrenia being the two best known) when cognitive, behavioral modification, Gestalt or other forms of talk therapy could help the non-psychotic folks get to the bottom of things without clouding their feelings with medications, they go once a month for 15-20 minutes for a "med check" with the psychiatrist and continue to think that medications they are on are the only thing that will get them "well." Often they never get well, instead becoming addicted to the medication. I personally think that borders on medical negligence in many cases, and alot of money going to the doctor and the drug companies. And we know how much they already rip off people who need meds but have no generics to use, or their meds are simply very overpriced.

Thanks again for your comments!

DRT