Mild platelet elevation: Hi, I have been stuck in... - MPN Voice

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Mild platelet elevation

Scientist47 profile image
21 Replies

Hi,

I have been stuck in limbo with mildly raised platelets since March 2020. Started at 420, then 430, 440 and now have been 450 since October 2020. My gp freaked me out (I have anxiety) by ordering a number of blood tests and scans to look for malignancy. Some tests are still to be done but all that has come back so far was a mild b12 deficiency. My ferrtin is also borderline at 18. Spoke with a gastro doctor who suggested mild iron deficiency and that iron studies should be done. My iron is right on the lower limit of 10 (normal 10-30) and my iron transferrin saturation was 13%, normal is (25-50%). I do have gastric acid reflux and am awaiting an endoscopy. The gastro didn't seem overly concerned and said the omeprazole I take can be affecting my ability to absorb iron, b12. But my mind is racing that I have something more going on. Anyone have a similar experience?. Ps I work in haematology and sometimes a little knowledge can make things worse 🙄. Thanks

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Scientist47
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21 Replies
PrinceA profile image
PrinceA

Hello Scientist47. Looks like similar to my numbers. My platelet count is on the high edge, last time was 447. I have also B12 deficiency and my ferrtin is 18 which my hematlogist thought it is low and is having me take iron supplement. I'm new to here too but during research I found that low iron would cause elevation in platelet (but haven't heard this from my hematologist) what is your hgb? mine is at 13, have you been tested for mutation ?

Scientist47 profile image
Scientist47 in reply to PrinceA

Hi wow that is so similar, no I haven't had a referral to haematology yet, I have just started iron to see if that helps. Did your gp want to rule out other malignancies ie gastro, lung ca etc

PrinceA profile image
PrinceA in reply to Scientist47

my GP actually referred me to hematologist when saw the elevation, I have slight elevation in my RBC too. My hematologist had me do ultrasound for my abdomen and more detailed blood work including the gene mutation which came positive for JAK2. I would ask GP to send you to hematologist as well if possible to test for mutation

Scientist47 profile image
Scientist47 in reply to PrinceA

My Hb is also at 13. So fer female it is normal

PrinceA profile image
PrinceA in reply to Scientist47

Our number are the same :), I'm female too 48 years old.

Scientist47 profile image
Scientist47 in reply to PrinceA

Yeah I work alongside haematologists, due to get my blood done again in a few weeks, trying to up my iron but struggling with tolerating them. I can get my Jak-2 checked and a referral to haematology. In the UK, in some places normal platelet range is up to 450. Usually have to have a persistant raised count above 450 for 3 months for further investigation.

PrinceA profile image
PrinceA in reply to Scientist47

yes here is the same in US, 450 is the range. Hopefully its secondary issue. Good luck to you. Keep us posted

hunter5582 profile image
hunter5582 in reply to Scientist47

Iron supplements stink! Stop you p like a cork. Upping fruit intake, particularly those high in sorbitol (e.g. plums) helps. I had to use Miralax every day. Occasionally had to use Senna tea or docusate too. Dietary iron is way easier to tolerate. Clams are one of the highest heme-iron sources there is. Hope you get is all sorted out.

Suema profile image
Suema

I was exactly the same, similar numbers to your own. Had all the tests and nothing is wrong. I have been put on 75 mgs Aspirin a day to be on the safe side. A second doctor that I saw said she would never have referred me to a Haematologist for such a low reading.

Wyebird profile image
Wyebird

I find iron a nightmare to understand as my heamoglobin drifts within 97-107. I can only take 1 iron tablet a day because my ferritin is 390+ top limit is 204. At the moment I even have to stop taking that. My iron went down to below 7🥴🥴. We are all different and sometimes as my heamo said they don’t have the answers as bloods were done to ensure all else ok. Yes b12 deficiency can occur for various reasons so I have ‘Engevita ‘ it’s a natural ingredient. When I remember I add to soup or other suitable dishes. It’s very pleasant. It comes in soft flake form with a mild cheesy flavour.Regarding your platelets. Have you been diagnosed? If not all that they are doing is normal. Your GP is looking after you.

Mostew profile image
Mostew

While you are waiting for tests and results try and work on things that will benefit you generally.

Are there any activities you like to do that can be helpful to take your mind off worrying?

Toblerone18 profile image
Toblerone18

My platelet count was elevated but similar numbers to you for about three months then I was referred to a haemotologist, who then referred me to Guy's because I had the JAK2 mutation, but my numbers actually came down to normal so he wasn't sure what to do. They initially thought it was ET but Guys then did a bone marrow biopsy to confirm PV. I was put on daily aspirin and they're now generally normal, occasionally slightly above. It took a year in total to get to that diagnosis. As you work in haemotology you'll know more than me but my iron levels are normal and I was told not to take iron tablets (I'm now pregnant and continued advice is 'just say no' if the midwife tries to give me iron)

MaggieSylvie profile image
MaggieSylvie

My platelets are 560. My haematologist is not concerned. It looks as if all you need is iron.

Caringdad13 profile image
Caringdad13

Platelet counts can vary by 50 to several hundred . Iron deficiency can cause elevations as well. If nothing comes back repeat in 6 months and chill

Caringdad13 profile image
Caringdad13 in reply to Caringdad13

My daughter has had over 1 million elevation for over 5 years and is doing well with a ex of essential Thrombocytosis

hunter5582 profile image
hunter5582

I saw below that you already realize that the top of the normal range for platelets is actually 450. I expect you already know that platelet level can fluctuate by as much as 100K in a single day as a function of normal body responses to stimuli like bleeding and inflammation. Iron deficiency can certainly elevate thrombopoiesis. The chronic inflammation from GERD could also elevate your platelet levels.

Hopefully your doc ordered the basic tests for a MPN to look for the three driver mutations (JAK2, CALR, MPL). Certainly the doc would also have ordered a CMP, prothrombin times, and a number of other rule-outs for other type of malignancies.

You are correct that a proton pump inhibitor can cause a deficiency in nutrients. Magnesium deficiency is also on that list (as I know from personal experience). I also have a Vit B/ Folate deficiency. Since I have to take Nexium for my GERD, I just compensate by taking supplements to boost my nutrient levels. I am also very iron deficient, but I am using venesections to treat the PV, so that is expected.

It may well turn out that you do not need any treatment beyond addressing nutrient deficiency. If you do need referral to a hematologist, be ware that MPNs are rare disorders. Most hematologists do not have the KSAs to provide optimal care. It is important to involve a MPN Specialist in your MPN care team. Here is a list of docs with MPN expertise.

mpnforum.com/list-hem./

Hope you get the diagnosis straightened out ASAP.

Bluetop profile image
Bluetop

I was also wondering how you feel physically. I was diagnosed with PV 4 years ago and it was a high level of platelets in a regular blood test which triggered the JAK2 test and the PV diagnosis. I was feelinf fine (and still do). I now have low iron, iron transferring saturation and low ferritin due to the hydroxycarbomide I take. I hope that your blood test quickly establish any health issue for you so that the appropriate treatment can be started if necessary.

Scientist47 profile image
Scientist47 in reply to Bluetop

Hi I had back pain at the time which prompted the original blood tests. This is now largely resolved. A few months later I had sweating at night, which prompted more blood tests and showed my platelets were still raised. This is also mainly resolved. I was feeling fine but now feel that the anxiety is affectinv my health. I also have some joint pain and slight restless legs which may be due to my low iron. I feel like the last year has taken its toll as I am a worrier about health issues anyway, thanks

Mazcd profile image
MazcdPartnerMPNVoice in reply to Scientist47

Hello Scientist47, I do hope that you get some answers soon regarding the blood counts and what they mean for you in terms of a diagnosis, it is very worrying when you don't know, it is understandable that you are feeling anxious, it might help to talk to your GP about this for some advice and help. Let us know how you get on, best wishes, Maz

Bluetop profile image
Bluetop

I hope you get to the bottom of it soon -that itself could help you anxiety. Beat wishes.

Stella57 profile image
Stella57

Hi,

I know everyone is different, and I have PV Jak2 + and I take 1 gram of Hydroxicarbamyde and a baby aspirin daily.

For over a year my red blood cells count maintains at a fraction lower than the perimeters of 'normal'. My consultant assures me that this is fine, and so long as it's monitored, in my case, a few too few is better than a lot too many!

Regarding anaemia, haemaglobin is at the lowest level, but he tells me that is not a concern and to stay away from red meats, and foods with high iron content. Supplements are a definite no.

I'm very sensitive to what I eat and drink now, and recently I really fancied a fillet steak and some red wine. As a carnivore who now mostly sticks to fish or veg, it was delicious, BUT the next day I felt awful. Lethargic, constipated, no energy what so ever. Yuck.

So what I took from that is that my body is happy to run a little a little anaemic and that the food I eat is very important to my well being. When it's having to tolerate strong drugs that are keeping me alive, it doesn't need to be fighting to tolerate the food I'm putting into to too!

All the best.

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