Worried about drop in platelet count: Hi my MPN... - MPN Voice

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Worried about drop in platelet count

jillydabrat profile image
12 Replies

Hi my MPN family

Throughout lockdown I have had my bloods taken at my GP's and then a telephone consultation with my haematologist a week later. I have no idea what my blood results mean, all I need to know is that they are good and no problems and this has been the case for years.

Yesterday I had my telephone call and I was asked if I had had an infection at the time of my blood tests as my platelet count was on the low side. It had dropped from 168 to 115. Should I be worried? I know there are people on here that know everything about blood numbers so I would really like some advice?

Thanks again

Jill

xx

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jillydabrat
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12 Replies
EleanorPV profile image
EleanorPV

This is my experience. Remember I'm not qualified. Do you have a specialist nurse who could reassure you? My GP is worried when my platelets drop below 130 but haematologist is fine even when they drop to 90.

Inca profile image
Inca in reply toEleanorPV

Yes Plaquetaire changes all the time .

hunter5582 profile image
hunter5582

It is hard to interpret without context. While reference ranges can vary by lab, broadly speaking 150 - 450 is the normal range for platelets. A platelet read of 115 would be thrombocytopenia. It is generally not a good idea to overreact to a single read on a lab. It is the trend that matters. Do bear in mind that platelet levels can cycle by as much a 100K in a single day as part of normal function. The first step would be to repeat the CBC in another week or so.

As I recall you are taking hydroxycarbamide to treat the PV. Thrombocytopenia is one of the known side effects of HU. If you do not normally have thrombocytosis as part of your PV then the HU could drop your platelet levels too low. As you may recall, HU is used to treat ET precisely because it does this. HU affects all hematopoiesis.

My PCP always says the simplest explanation is usually the best explanation. You are taking a med that depresses platelet levels . Your platelet levels are depressed. It may be a simple as altering your treatment plan. Best not to assume anything, however. This does need follow up ASAP with your MPN Specialist. They will likely want to do a bit more than the CBC, perhaps a CMP and a few other labs just to rule things out.

I would suggest not worrying too much about this, but definitely follow up ASAP. Please do let us know how you get on.

Inca profile image
Inca in reply tohunter5582

Mine dropped to about nil ,was immediately hospitalised ,taken off Hydrea,changed onto Jakavi about two yrs ago.Now they stay stable.

bordeauxgirl profile image
bordeauxgirl

Hi Jilly , I am the same as you , not fully understanding all my blood results, so I have requested my doctor to send me a full list of the results of such blood tests, then whilst I have my consultation with the Haematologist I ask them to explain all the results, such as when some are considered high. Mine have a little capital 'H' beside the one's that are uncertain, so I highlight those and ask what that one or this one means. I feel a bit better after seeing and hearing I am not on the way out .Try this, you are entitled to have this info. Best wishes June.

Wyebird profile image
Wyebird in reply tobordeauxgirl

I do that too. I also write down how I feel or if I’ve been ill since last test. Quite easy when I get tested approx every 10 weeks ☺️

Inca profile image
Inca

My blood is tested every month pris de sang by my nurse who comes to our house ,has done for 12 years,I then have full results sent to me ,my G P & my consultant.I have everything explained to me by my G P who phones the consultant if there is a difference in any thing,they discuss ,I listen....its been exactly that since my diagnosis & treatment....surely it should be like that for all with M P N anywhere.We have piles of folders stacked up with my monthly pris de sang ,can refer back the 12 yrs of my P V.!! surgery?surgery?

Inca profile image
Inca

Sorry no idea where surgery came from,did not type it,had surgery for other things but not P V ,sorry folks,???????

john0084 profile image
john0084

Like you I get concerned when issues are flagged up . Hunters right of course it's the trend that matters to mine were like that in Jan, they reduced my hydroxy and things have improved. It's worrying though when they have you repeat a test quickly, hope your platelets bounce back

,

beetle profile image
beetle

I have had a platelet count between 30 - 90 for several years now. Nobody seems particularly worried about it unless I need any type of surgery or dental extraction when below 50. In such a case I would need a platelet transfusion

Inclement profile image
Inclement

In UK if you can find out which hospital processes your GP blood tests you can then subscribe to the hospital's online portal for full access to records. Online access is very useful too for messaging direct to haemo dept. I assume all hospitals now have this facility?

jillydabrat profile image
jillydabrat

Thank you for all the amazing information guys

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