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What do high platelet levels mean?

Messages
3,263
Hi, I've just come back from a visit to a Rheumatologist. Having braced myself for the usual invalidating response, he said immediately that there were some very strange things in my blood that he wanted to get to the bottom of. He said I had very high platelet levels in particular and that there were a sign of ongoing immune activity, and not characteristic of ME.

He said there were no indicators of autoimmune illness - the features were sort of the opposite of what he sees in RA, MS - but has referred me to an infectious diseases person.

I looked here on PR, and most posters mention low, not high platelets. Anyone know what high platelets might mean?
 
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A.B.

Senior Member
Messages
3,780
Do you have the results? High platelets is unspecific and the other results might allow a more accurate interpretation.
 
Messages
3,263
Do you have the results? High platelets is unspecific and the other results might allow a more accurate interpretation.
I have never asked for results. How does one do this without compromising one's relationship with the specialist?
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
In the places I have lived in, patients have the legal right to get copies of their test results. I make sure I get copies of everything now and keep a summary record that some doctors have found useful to look at. Some places have centralised online repositories for test results and patients have the right to access their own results.

Any doctor should be willing to provide copies and should not be surprised or affronted if you ask for them. If they are, that's a red flag.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I have never asked for results. How does one do this without compromising one's relationship with the specialist?
When the specialist says you have high platelets, you can ask, "How high?" Then ask, "What is the normal range?" I can't imagine any doctor being offended by this.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Sometimes lab tests come back just wrong, esp. if you get a reading that's just out of the blue without any other symptoms.

Simply put, platelets help to clot your blood; too few and you bleed too much, too many and your blood clots too rapidly. IRL the situation is much more complex because platelets are responsive to inflammation and infection, among other things.
https://en.m.wikipedia.org/wiki/Platelet
 
Messages
3,263
Okay, my platetet counts are very consistent - 496 to 500 across a period of two years (I presume these are thousands). That is apparently formally thrombocytosis, but not the highest it could be.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Sometimes lab tests come back just wrong, esp. if you get a reading that's just out of the blue without any other symptoms.
Platelet counts are generated by a machine with a variability of less than 5%. As a quality control measure, platelet counts are checked against a blood smear that is stained and examined under the microscope at high power. When I was doing a lot of platelet counts, I could estimate the true platelet count to within 10-15% by looking at the blood smear.
Okay, my platetet counts are very consistent - 496 to 500 across a period of two years (I presume these are thousands). That is apparently formally thrombocytosis, but not the highest it could be.
Yes, those are thousands per microliter and your platelets are high. Depending on which lab is doing the reporting, upper levels of normal could be 400,000 to 500,000, but it's usually around 450,000.

This might be helpful:
https://my.clevelandclinic.org/health/articles/thrombocytosis

There are two types of thrombocytosis: primary and secondary. Primary thrombocytosis, also known as essential thrombocythemia (or ET), is a disease in which abnormal cells in the bone marrow cause an increase in platelets. The cause is unknown. It is not considered an inherited (family) condition despite the finding of certain gene mutations in the blood or bone marrow.

Secondary thrombocytosis is caused by another condition the patient may be suffering from, such as:
  • Anemia due to iron deficiency
  • Cancer
  • Inflammation or infection
  • Surgery, especially splenectomy (removal of the spleen)
[....]
Even though the platelet count is elevated for a short time (or even indefinitely after splenctomy), secondary thrombocytosis does not typically lead to abnormal blood clotting. Primary thrombocytosis, or essential thrombocythemia, can cause serious bleeding or clotting complications.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I have never asked for results. How does one do this without compromising one's relationship with the specialist?
I get the results either from the lab or thru my doc. It's automatic. I've never had a problem getting results nor discussing them. I live in California; perhaps it's different where you are.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
I have never asked for results. How does one do this without compromising one's relationship with the specialist?
You're the customer paying for the service and should be entitled to a copy of the results. If it's through a public hospital, you should be able apply for a copy of any test results through the Records Dept.

It's best if you have your own copy of everything, very convenient for giving an underperforming doctor the flick and getting a new one up to speed quickly on what has already been done.
 

Paralee

Senior Member
Messages
571
Location
USA
I have never asked for results. How does one do this without compromising one's relationship with the specialist?

You're his boss, he's your employee, you just need your reports, right?;)

When I'm filling out my records request, they want to know what for on the form, I just check "other" and fill in
"file cabinet".
 
Messages
3,263
Thanks, @Paralee. I got them!

It turned out to be easy. All results are posted on an online repository, which all patients have access to. Everything is there going back 3 years!

I was a little surprised, as there seemed to be lots of things wrong that no-one had ever pointed out to me.
  • Raised C reactive protein levels (ranging from 9-16 across different times periods)
  • Consistently raised platelet counts
  • Low levels of IgG3 (tested once only)
  • Raised levels TD4 and TD8 Cells, elevated TD4/TD8 ratio (tested once only)
  • On some occasions, raised lymphocytes, raised overall white blood cell counts, raised monocytes and raised neutrophils
I'm not sure what to make of all this, anyone have any thoughts?
 
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Paralee

Senior Member
Messages
571
Location
USA
@Woolie, great! It's all in how you look at it, although it takes some courage sometimes.
(Also, I didn't read back very far looking, but what kind of doc was that?)

And @Valentijn gave you a good start for research!