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ITP? or something else???

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6 years 11 months ago #65096 by cvignol
ITP? or something else??? was created by cvignol
So a little background info first...
A little over a year ago, I had an unexplained fever, ridiculous amount of fatigue, and an odd dull headache. I am not a "doctor" person, but I took myself to urgent care. Urgent care completely freaked out when they saw my platelet count, and I ended up at the ER. For the past year, my platelets have consistently been in the 40s and 50s. I feel very fortunate that my platelet counts have been stable, and I have been medication free. However, my hematologists have yet to diagnose me with ITP. They are very hesitant to give me the diagnosis as my red blood cells and white blood cells are also slightly off. My hemoglobin is low normal(12s), but my red blood cells are a little large. My white blood cells are typically anywhere from 3.5-4, and my ANC likes to hang out around 1.2-1.6. I have already had two bone marrow biopsies, and my hematologist(s) seems stumped. No signs of acute or chronic cancers, no aplastic anemia, no MDS... I have already had a second opinion at a prestigious cancer center. Just about the only thing I have not been tested for is an autoimmune disorder because I have been completely asymptomatic since my initial "flare up and/or virus" that brought me to urgent care.

Just curious if there is anybody out there like me who in addition to the low platelet counts has other blood cell counts that are slightly off? Did your doc call it ITP?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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6 years 11 months ago #65097 by Sandi
Replied by Sandi on topic ITP? or something else???
Normally, an ITP diagnosis is given if platelets are affected only. When reds and/or whites are affected, it's usually diagnosed as Evans Syndrome. However, if they are only slightly low, it might not be cause for concern. This is not an easy question to answer and is best left for your doctors.

Have they done a Coombs test?
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 11 months ago #65099 by Hal9000
Replied by Hal9000 on topic ITP? or something else???
Curious cvignol.
Previous to the incident on diagnoses. How long had it been since platelets were measure, and were normal?
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6 years 11 months ago #65103 by cvignol
Replied by cvignol on topic ITP? or something else???
They did a Coombs test when I first presented with the symptoms, and it was negative.

Prior to my visit with urgent care, my last bloodwork had been during and after my pregnancies. We determined that I have been mildly anemic for about 8 years. My platelets were normal back in 2011 during my first pregnancy and looks like they started to drop after my daughter was born in 2013. (120s).
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 11 months ago #65105 by Hal9000
Replied by Hal9000 on topic ITP? or something else???
How about exercise? Do you run / jog / long walks, or work out?
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6 years 11 months ago #65107 by cvignol
Replied by cvignol on topic ITP? or something else???
I was actually a runner pre-little kids. Now, I am happy if I can get a 30 minute walk in on the treadmill.
  • Hal9000
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6 years 11 months ago - 6 years 11 months ago #65110 by Hal9000
Replied by Hal9000 on topic ITP? or something else???
Ok. Well, it goes like this. Some folks have a very slow count descent lower as they get older. A lot could have happened in the past five years. That is one possibility - even if they are holding in a constant range for the past year.

But just looking at your count range, there is a group of folks that end up in that range - a sort of 'partial remission'. Take a look at this thread:
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html

Both 'jayinchicago' and 'EmilyK' are in that group and are regular visitors here. What seems to trigger this type of ITP is a trifecta of three things. The combination of exercise, Folate deficiency, and the seasonal Flu seems to be the trigger. If you are in this group the idea of making sure you get enough Folate in your diet might be prudent.

As I recall, Jay has talked about what he sees a link between his Lymphocyte numbers and his platelet count numbers and that his Lymphocytes are a little low. You mentioned White cells so that might be the same thing he is experiencing. So, between your count range and white blood cells perhaps this might be the case for you too.

Do you take a multi-vitamin or a B-complex vitamin regularly?
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6 years 11 months ago #65132 by cvignol
Replied by cvignol on topic ITP? or something else???
I do take a multi-vitamin as well as B12, C, and D3. I actually have high lymphocytes and lower neutrophils. I have noticed a pattern though. If my WBCs go into normal range, my platelets slightly drop. If my platelets are higher than normal, my WBCs will drop. My body seems to have its own state of homeostasis, although abnormal.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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6 years 11 months ago #65137 by Sandi
Replied by Sandi on topic ITP? or something else???
That is generally what happens with Evans Syndrome....that see saw thing with the counts. I've seen it many times over the years. One goes up and the other goes down. The important thing here to keep in mind is that none of them are severe enough to have to treat. Although it's frustrating, that is a good thing!
The following user(s) said Thank You: cvignol