Latest appointment update…..ET investigation

[Purdy13]

Further to my previous post from yesterday I just thought I’d update you all of the outcome from my Consultants telephone appointment today incase my info may be of use to others….

Due to ongoing high platelets (usually in 500’s) I am currently under investigation for ET. I have had numerous tests to date and have proved negative to the 3 main drivers (Jak2, CalR, MPL). A bone marrow biopsy may be the next step….

On reviewing my latest bloods, platelets 565, my Specialist noted that I am still iron deficient. Not severe enough yet to be aneamic, but low Ferritin, Transferrin saturation etc…. As she can’t yet rule out that this could potentially be the cause of my high platelets, all talk of a bone marrow biopsy has been put on hold until I get my iron right.

I’m not sure if it will end up being a Reactive cause for me or not but time will tell. I’ll continue with the supplements. I must admit I always thought you had to be actually Anaemic to affect your platelets but apparently in some cases Iron deficiency without anaemia alone can do this….

I also asked her if I should be having a scan on my spleen as I’ve read that this can be a standard part of the diagnostic work-up but she said that this is only needed when platelet counts are low in the blood to check if platelets are being overly stored in the spleen itself instead. As my platelets are high in my blood and as I have no discomfort in my spleen area she feels this is unnecessary.

Finally I asked if I should be on any sort of blood thinners ie baby aspirin at this stage and she said that in my current case no. Reason being I am already Iron deficient and struggling to rectify it and so making my blood thin would be counter-productive as although I’m 51, I have not yet gone through menopause and I am menstruating regularly (sorry if that’s too much info) and thinners could make me lose more blood. So she seems to be focusing more on getting my iron levels right than any possible cautionary medication for potential blood clots, I can only trust in her judgement and hope she is right….?

So all in all I’m quite happy with how the conversation went…. My journey is still ongoing, I may end up rectifying my iron deficiency and still have high platelets so a future bone marrow biopsy to test for Triple negative ET could still well be on the cards going forwards. For now though I’ll try to get my stress and anxiety down a little from it all and cross each hurdle as I come to it…

Hope this info may be of help to others in a similar situation xx

[hunter5582]

That sounds like good news. and a good plan.

It is indeed correct that iron deficiency without anemia can cause reactive thrombocytosis. It happened to me when I was iron deficient for too long PLT count was +200K.

Of note, is that iron deficiency without anemia due to menstruation is a known issues. ashpublications.org/blood/a... FYI - not to worry about TMI. We need to be able to deal with all aspects of bodily function when managing a MPN.

Blood loss = iron loss. Given that you have not had any incidents of thrombosis, holding off on the aspirin makes sense. Reducing bleeding will help you restore your iron levels. You may well find that this is indeed a reactive thrombocytosis. The risk/benefit ratio favors you on this one.

You can actually have splenomegaly with thrombocytosis too. It is true that when people progress into MF with thrombocytopenia they are more likely to have clinically significant splenomegaly. In the absence of palpable splenomegaly or symptoms like early satiety or pain, it is unlikely that you have significant splenomegaly. Note that many people with ET/PV have some mild enlargement, but it not significant and does not require intervention.

Getting your iron levels up and then reassessing your status if a very good plan. If normalizing iron does not restore PLT to WNL, then I expect a BMB will be the next step.

Wishing you all the best.

[Purdy13 in reply to hunter5582]

Thank you for your reply and the informative link too hunter5582

Interestingly when my Specialist first picked up my iron deficiency (although I also had a good idea I was too after googling my reference range results), a locum GP (as my usual was on holiday) actually questioned as to whether my prescription for Ferrous Sulphate was actually needed as my Haemaglobin and Red cells were within normal range. I ended up explaining to him what was told to me that although I wasn’t actually anaemic I am still Iron deficient which has its own set of problems and which the Specialist wants rectifying before it does actually go as far as anaemia. I found this quite unsettling that I needed to explain this to a qualified GP, it doesn’t really instil you with confidence does it….

I shall plod on… What I can honestly say about all of this is that the mental worry / anxiety effect of it all has, for me, been the worst. I don’t have any physical symptoms at all and would never have known about high platelets with me if it wasn’t for being told through routine blood tests. It’s the worry that has had the biggest impact on me so far. Thankfully though I have come a long way in trying to manage it over the last year so I hope others reading this will take comfort in that you do eventually get your head around it all and it does get better…

For me it’s now taken 18 months to get tested and told about iron. I can’t believe it’s taken this long to find out when everything I read indicates it should usually be one of the first tests done. My own GP has never even tested my iron panel, maybe if he had been a bit more on the ball this could have potentially been picked up and treated before even making the decision to refer me to a Haemo….

So all in all I have a little hope for the time being that this situation may be the cause of my high platelets. I still don’t want to get my hopes up too high so I’ll remain cautious, do my best to get my iron up, and then see how things stand.

Wishing you a happy Easter Hunter and thanks again for your valuable input! X

[hunter5582 in reply to Purdy13]

I am glad to hear that you are finding ways to manage the worry / anxiety. That kind of stress is damaging to both mind and body. We cannot always remove the cause of stress but we can always change how we deal with it.

I am not at all surprised that you had to explain your iron deficiency situation to the locum GP. Needing to explain our situation to doctors who are not MPN Specialists is quite common. I find that it is the norm to need to explain what PV is, how the JAK2 mutation manifests, and how iron deficiency without anemia manifests. Doctors are human beings. It is not possible for them to know everything all patients need them to know. The very best doctors acknowledge the limits to their own knowledge. They limit their scope of practice to their area of competence. The best doctors listen to their patients and are willing to learn from them. They also recognize when they need to consult with a more knowledgeable colleague and refer the patient to see another doctor when when patient's needs are beyond their ability to treat effectively. There are wonderful doctors who have those attributes. It is up to us as empowered patients to choose to see doctors who practice medicine in this way.

You do have a good plan in place. Hoping the iron deficiency is the cause of reactive thrombocytosis is very reasonable. I would suggest that you can have another hope. Know that even if you do have a triple-negative ET, that is not the end of the story. It is the beginning of a new journey. ET is a condition that can be successfully managed with the proper care. The hope would be that you will be one of the many who successfully manage ET and live a good life.

All the best.

[Purdy13 in reply to hunter5582]

Thats a lovely comment to make and hope to have, thank you. One things for sure is that whether I end up having an MPN or not I shall always keep my account on this Forum now as I’ve been astounded by the knowledge, resilience , support and positive outlooks that most on here seem to have. It truly is inspirational and whether I end up going on my own journey with ET or not I feel like I have made “cyber” friends on here so I shall always now be following as I do care about you all and want to see how everyone is doing….x

[Sunshine1932]

Hi Purdy13

I joined this forum as I too have had slightly high platelets for the past two years but not quite hitting 500. My GP has not taken it any further.

Interestingly I too have had very low ferritin to the point I was put on iron tablets for a wee while which helped the ferritin rise to a respectable level. When I stopped the iron tablets my ferritin dropped by half but still within range. So now I take an iron tablet when having my period. Not sure of it helps but that's what I have been doing.

Im 42 and would say my periods got a lot heavier about 6 months ago so perhaps this would add to the low ferritin I guess.

Thank you for your update as it helps me feel less worried about having raised platelets.

I also have a b12 deficiency so perhaps this adds to the mix to.

Have a wonderful Easter weekend 🐣

[Purdy13 in reply to Sunshine1932]

Hi Seren1932,

Thank you for your input, as your platelets are still in 400’s and you also suffer with low Ferritin and low B12 then if I were you I’d have confidence in your GP’s decision not to take it any further at this stage as both deficiencies are known causes of higher platelet counts….

Try and keep your levels in a normal range and hopefully your platelet count will follow suit…. That’s what I need to try and do now with my iron levels and see what happens….

Glad my info has been of some help….All the best x

[Aime]

Glad you’re getting some answers to your questions. I am iron deficient plus low ferritin, so sitting on the fence at the moment and not doing anything because my hematocrit is slowly rising again and once it gets to .45, that’s me undergoing venesection again, which in turn makes me anaemic again! It’s a never ending spiral but as long as my bloods are within the “norms” for me and I’m coping, I just get on with things. Everyone is different, so it is so important you get the answers you need, to quell any anxiety.

Take care, kindest regards Aime 😻😻

[Labbymom]

did you ever get any clarity? I posted today for the first time, I’m in a similar boat except I did have a BMB 3.5 years ago that showed nothing wrong as my platelets have been up for 5 years. They recently went to 500 though which is higher than previously.

Interestingly, I found an iron study done 5 years ago when this all started and my ferritin was low (19) with iron saturation at 13. It was never remarked upon at the time, probably because my red blood counts were high and even slightly too high.

The high hematocrit showed up again (just a bit high) and my GP says there’s no way low iron could be the issue with those red blood count numbers.

Like you, I’m an anxious mess worrying it’s an occult tumor or some other terrible problem.

[Purdy13]

The worry and anxiety is awful isn’t it… I’m still in the same situation and awaiting my next lot of blood tests along with follow up Haematology appointment at the end of July.

As it stands I am negative for the main Driver mutations and the next step for me will probably be the BMB. However, my Haematologist wants to hold off doing this until my iron stores have gone up as I’m deficient. My haemaglobin and red cell count are within the normal range so I am not anaemic but like you I have low ferritin levels and 16% transferrin saturation. My Hemo seems to be going along the lines of doing nothing until my iron stores have increased and then see what affect this has on my platelet count…

I’m currently taking x2 200mg Ferrous Sulphate tablets per day so we’ll see if there’s any improvement end July.

I’d be thinking quite positive in your situation as you are also negative for the mutations and have had a clear BMB. It is worrying and frustrating though not knowing what causes the increase…

I hope to get definite answers for myself in due course but my mind has been blown by people’s stories on here… I’ve read that people have been tested positive for Jak2 only to be retested years later and they’re negative, BMB’s to be “inconclusive” etc etc and it seems there are cases that just don’t make any sense at all.

My other worry is that if you’re a person (in general context) who’s platelets tend to run high every so often are you then faced with a life of constant stress and worry of having to be re-referred from GP’s to Haematologists every time it happens? I couldn’t live my life like that, having the mutation tests once and BMB fair enough but constantly having them repeated every time platelets go high in the future isn’t something that I would want to do, it’s just too much worry and anxiety all the time…

Nothings straightforward is it….. Hang on in there and try and stay positive, that’s all we can do… Wishing you all the very best xx