Update High Platelets - Thoughts Please….?

[Purdy13]

Hi Everyone, I’ve been documenting my story on here both for advice for myself and also for others to follow should they be in a similar situation….

Quick recap…. I have now been under the care of a Haematologist for nearly 3 years after being referred by my GP for consistently high platelet counts, high 500’s when referred…. I feel well (other than stress of it all), no thrombotic episodes or symptoms associated with high platelets. Other ailments I do suffer with are… Underactive thyroid, Irritable Bowel Syndrome, Vitiligo autoimmune skin disorder, many allergies.

Since being monitored by my Haematologist my blood results have always been in the normal range for everything except Platelet Count and Eosinophils (they are putting high Eosinophils down to allergies). I have also had normal results following a Mammogram, Colonoscopy and Endoscopy. I am also negative for JAK2, CalR and MPL.

Yesterday I had a phone call appointment with my Specialist to discuss my latest blood results which showed my latest platelet count being my lowest yet of 455,000 (my lab range is 150-450,000). I have also now been treated for low ferritin levels which were picked up on and have lost weight with diet and excercise (which I needed to do), so I am wondering if this has had a positive effect on lowering my platelet count?

As such my Haematologist said that she is quite convinced that my case is that of a “Reactive” one due to the trend of my Platelet count coming down over the last 3 years, negative for the main 3 driver mutations and no symptoms of an MPN. She says that my count of 455 is now only slightly over “normal” and that she would be happy to discharge me out of her care and back to my own GP.

My only niggle is that I’m still not officially within the normal range and from what I’ve been reading I could still be in the minority of “triple negative” patients….? I ran this past her and she said she doesn’t believe I am and that a bone marrow biopsy is now not necessary….

I’m obviously happy that she is no longer concerned and I do not want to go through a BMB if not necessary but I have read that there are people on this Forum with lower counts than myself that are actually “triple negative”.

Should I be pushing for further tests or should I just trust her judgement? I have asked if I can remain under her care for one more testing in 4 months time which she has been happy to go along with…. Many thanks.

[Cat1001954]

hi I’m triple negative ET had for two years I’m 70 and platelet count 456

[Purdy13 in reply to Cat1001954]

This is what I mean Cat1001954, my Haematologist seems happy to discharge me with platelet count 455 and negative for 3 drivers, she doesn’t think a BMB is necessary?

[Cat1001954 in reply to Purdy13]

Try ask for 2nd opinion! Or if not say you feel unhappy about your numbers it’s your body so you should be allowed to question decisions good luck x

[Cat1001954]

plus I’m on10 hydroxycabamide a week

[Purdy13 in reply to Cat1001954]

Is your platelet count 456 now on Hydroxy or when you were diagnosed? I’m presuming you were diagnosed by a BMB?

[Cat1001954]

it was high 1100 kept getting uti and blood in urine that’s why did bmb. To confirm triple negative ET. My consultant said that it’s only the chemo drugs keeping me alive

[Cat1001954 in reply to Cat1001954]

456 was last month I’m due agsin end of this month

[Purdy13]

Thats probably what the difference is then, I’m 52 years old and my count of 455 is without any medication plus I have no MPN symptoms or thrombotic events to date…. Your situation sounds a lot different and warranted the BMB…. I do wish you well on your journey x

[Rem31]

There’s no treatment that needs monitoring and your GP can keep an eye on your blood counts, perhaps once or twice annually and can refer back to haematology with any out of the ordinary changes. I understand the relief that can come with having a specific diagnosis and not having one maybe akin to feeling left in mid air.

Try to stop worrying but not easy done when it’s been a concern for so long. Your haematologist is saying you are free to go and that's a huge positive.

[Purdy13 in reply to Rem31]

Thank you so much, it is a relief that my Haematologist isn’t concerned and I’m more than happy to put all of this behind me but there’s always that little niggle that can spoil the party isn’t there? Lol. Like you say though I shall still be checked by my GP a couple of times a year for monitoring….

[Cassandra61]

Hiya,Hope you are well this morning. I wonder if you might ask for a BMB before you do the next stage and make any decisions. I know, I know you don't want to have one but for me the thought of it was a lot worse than the actuality and I have had two. I promised myself the following day in pyjamas, watching crap TV and being weighted on and that got me through. I think it might give you a bit more information and you know what it is like in the UK , once you are discharged, you have to start all over again from the beginning with someone who hasn't got your notes and has never heard of MPN. Let us know how you get on.

[Olliebunny]

Hi I am triple negative which was diagnosed with a bmb. My platelet fluctuate and have been above normal for years. My last two tests were 423 and 475. I think it is only possible to tell if it is a MPN is a bmb. My experience of the biopsy was very painful, so if you do push for one, I would ask for pain relief.Good luck ,hope you get a conclusion.

[Lifam]

I personal would suggest may be you can ask your GP giving you blood tests quarterly instead of only twice a year, so you can monitor your platelets closely in case any changes.I asked my GP for full blood tests quarterly (at least) plus additional one for my haematologist, this way i can also monitor my other blood counts apart from platelets. It has been 5 years, my platelets always within the range, just because the medication (been taking HU 5 days weekly)and blood thinner 75mg daily. Having few blood tests a year work for me.

[Exeter21]

I remained permanently on care of Haemotology. My platelets were 520 ET diagnosed. I use Peg Interferon injections. Platelets now 300 average. 👌

[hunter5582]

There is plenty going on in your body, including low iron, that would suggest reactive thrombocytosis. Note that inflammation is another cause of reactive thrombocytosis. The only way to rule out a triple negative ET would be to do a BMB. The question is whether knowing that you have a triple negative ET would change your care plan. Also, is resolving the uncertainty worth the having to do a BMB? It is not a black and white question. Your preference is a driving factor.

Wishing you all the best moving forward.

[Purdy13]

Thank you everyone for taking the time to reply. It really is very much appreciated….

I think I may be a bit clearer on the right way forward for me after my next lot of blood tests in 4 months. My Haematologist has agreed to let me stay under her care for those before referring me back to my GP. My platelet results from those tests will hopefully be clearer in leading the way ….

Should they remain the same or go into normal range I think I will be taking her advice which is to go under the care of my GP to be monitored without having a BMB.

If my results go higher again then she may have a change of mind in her recommendations…. Either way I am in a good spot right now with only slightly higher than normal platelet count, negative results for the 3 driver mutations and no symptoms. I shall try and relax a little now and be grateful for my current situation….

[dogsandhorses]

It would seem to me that you have too many questions to just let it go. I have had 2 BMB's, and it isn't much worse than getting your teeth cleaned. If you need it, just do it.

[Purdy13 in reply to dogsandhorses]

My point is though that my Haematologist does not think it is necessary as over 3 years my platelets have trended downwards, I am now only just above normal range, I have no symptoms and are negative for the 3 main gene driver tests. It is difficult to push for something when the Specialist does not think it necessary….?? I think maybe more time will tell which way this is going to go…

[dogsandhorses]

You are probably right. I believe we have to follow what our own bodies and our intuition tells us. My point was that a BMB is no big deal, and for you not to be afraid of it, if or when you need it.

[Purdy13 in reply to dogsandhorses]

Thank you, your input is very much appreciated 👍😃

[Jamesxyz]

I would let sleeping dogs lie and not get a BMB.

Your PLT is practically NORMAL and requires no treatment.

Just enjoy your life.

Just my 2 cents.

[jointpain]

As a person who hasn't got an mpn, though my wife has MF and without meds her platelets reach well over 1500, and too much hydroxycarbamide has been 4, A neighbour also has a platelet count of 5 or so and isn't on anything. My advice would be to ask for FBC at least every year. And enjoy life, and eat more iron rich food. Have a good life.

[Indigo42916]

Hello,

Reactive thrombocytosis can be caused by low iron. You might want to make sure your iron levels are ok.

Take care.