Low iron and high platelets

[Roberta34]

Need some reassurance - my daughter who is one years old has been having high platelets since October. Results varied from 630 to 1005. At first the doctor stated that it could be because of a viral infection but since these high platelets have been consistent and never went into a normal range - he ordered more tests.

Her hemoglobin was always fine but through a specific test for iron, it resulted that her iron is low. They are suspecting that it might be because of the iron that the platelets are so high but not 100% sure. She is now on a high iron supplement and will retest in 3 months.

Obviously I am so anxious. Happy that a possible cause was found but at the same time something in my gut is telling me that there is something else happening.

Anyone been through this? If yes, what was your experience and did the platelets fluctuate so much in your case?

Iron stores are often relatively low in toddlers - worth treating if detected but may or may not be significant. Iron deficiency can cause high platelet counts.

In an otherwise well child, the most likely outcome is for the platelets to fall back into normal range but they don't necessarily run to any particular timetable.

Thank you for your reply. We are treating the iron deficiency atm.

What worries me the most is that her platelets were never in range. Hoping they will eventually get into the normal range

Hi! May I ask you do you have any updates? My son who is 3 had a high platelet count also, but his iron seems to be fine .

Hi. Unfortunately no. She is still being monitored as iron is now fine but platelets still high. Last count was 776.

How high were his platelets if I may ask?

537, normal is until 480.

we have to repeat his blood soon.

he was absolutely screaming when they took his blood .

they had to poke him twice.

I’ve read it can also affect platelets, but don’t not if that’s true or not .
did they tell you anything. What can cause it?

Not to diminish your worry but 537 its not much. Could be because of a viral infection. I hope for you its just that.

I can understand. My daughter had around 10 blood tests in a year. Its always a nightmare and my heart breaks every time.

In our case, our daughter has consistent high platelet count now for a year. The readings were always between 630 and 1005, so relatively very high. To date they don't know yet what is going on cause everything else seems normal. So they keep on monitoring every 2 months. They carried out blood tests for leukemia and genetic disorders too and everything came back normal.

Thank you for your answer.

my son was not sick in the last 2 month so that’s why I am not sure if it’s that or not.

I am very happy to hear that all the tests came back normal for your little one.

may I ask you what percentage was her neutrophil and lymphocytes in her white blood?
my son has higher lymphocytes and I’ve read that’s not good 😔

many thanks

No problem at all. Ask as much as you want. I know how stressful this is. On most tests, her neutrophils and lymphocytes are in good range even though her platelets count are way high. When her neutrophils were low and lymphocytes were high, she was actually sick. I didn't realise she was sick as she had no symptoms, but then developed a rash and when they tested they found out she actually had a viral infection.

When are they repeating his tests?

I am of course not an expert but my daughter have very low iron and low white blood cell count. After treatment with iron supplements the white cells were still not right but were improved and she had no sinister causes to these issues. I hope you both manage to sort out your little ones cases but I send a lot of love as I was very worried for a while!

Thanks! Unfortunately my daughter's iron is now good and still has issues with platelet count. That's why they are still trying to figure out what is going on. In my daughter's case, it is a bit different, as the platelet count is at times above 1000s which is very risky as it makes her more vulnerable to get blood clots and have a thrombosis.

Are you seeing a haematologist I assume and not just the GP?

Yes sure. She is followed by a pediatrician and hematologist.

Good - I hope you get some answers soon. I have dodgy blood /bone marrow and within the family of these related conditions is something called Essential Thrombocythemia (ET). It sounds like your drs are still trying to rule out other possibilities of the high platelets as I think ET is an ‘excluded all other possibilities’ type of diagnosis.

Thanks! I hope so too as living with uncertainty its not nice. I feel I am always on the edge afraid that she will develop something worse, like blood cancer.

Yes, exactly. That's what they are trying to do. I also believe that they need to do a bone marrow biopsy to definitely rule out anything else. However, they are trying to postpone this, since she is still very young.

She is so young and indeed BMB is a bit unpleasant (I assume that young they would do it under sedation?) but at least it will bring you some answers.
So sorry that you’ve got this uncertainty hanging over you all at the moment.

Yes definitely it will be under full sedation. Thank you!

Hello, how have things been for you now? my 8m old daughter has had 2 high readings 900 which we were jot originally told about, after she caught covid and had a minor funny turn was hospitalised (hey suspected sepsis but only found covid) then in early November she put of the blue lost consiousness for a few minutes and rag doll like, so rushed to hospital and platelets came back as 1200, extreme. they couldn't find a cause for her episode so called it a BRUE but only hereentioned these two high readings. on Wednesday this week she has to return for a new reading. I am quite nervous because they said very little at the hospital but his reading seems unusually high and we still have no answer for why she lost consiousness...she has cows milk allergy but they didn't think it was linked to that. she did test positive for flu during the tests she had for the BRUE but even with that the platelets seems very high....she often goes oddly pale while sleeping and scares me silly. her bloods looks led quite odd with the covid which I guess is why they kept her in 3 days to check for sepsis, but after the BRUE is was really only the platelets that looked unusual. thanks!

@Roberta34 hello, how is everything with your daughters platelets now? Did they manage to find a cause for it? I have a family member going through the same thing and awaiting tests.