Hi everyone, so it’s been over a year since my last post and in that time my high platelets saga is still ongoing…. I have been quiet on here as I’ve struggled terribly with stress and anxiety about it all and found that distraction by not talking about it was my best way of coping….until now…. So here’s an update on it all and your opinions will be very much welcomed….
My platelet count had been raised for over 6 months when my GP referred me to a Haematologist. They have ranged between 500-622 with a normal count of 364 once within that time. I have no symptoms and feel well.
My Haematologist has done numerous blood tests including Jak2, CalR and MPL, all of which have come back as negative. Liver and kidney functions are fine, all other blood results are normal with the exception of Eosinophils which are slightly raised. They think this may be caused by allergies to my pet cats, dust mites, hayfever etc. An Ear Nose & Throat Specialist confirmed allergic rhinitis which I need to take an antihistamine tablet per day and steroid nasal spray.
Other tests I’ve had done are an Endoscopy and a Colonoscopy, both of which have come back clear.
I asked for Iron studies to be done as my Specialist forgot to do them (?!!), I had low Ferritin but not Anemia. I’ve been on iron supplements for iron deficiency without anemia for 3 months, my Ferritin levels are improving but platelets are still at 517 so maybe low Ferritin is not the cause….
Although I am “triple negative” I’ve been told the next step would be a bone marrow biopsy….and this is the part I’m now struggling with….
I know that a bone marrow biopsy will give a definitive diagnosis of ET or not ET but I’m also aware that it’s a very invasive procedure and not without its risks ie infection, nerve damage etc… My Specialist has said that if I have it done and it’s normal I will be monitored only, still for high platelets, if I have it done and it is ET, I am low risk so will therefore be monitored only with no treatment unless they drastically rose or I hit 65 years of age (I’m 51 this year) and finally if I don’t have it done at all then once again I will just be monitored. So in all three scenarios the only course of action is “to be monitored”. I cannot see the point, at this stage, in putting myself through a bone marrow biopsy if the outcome is the same in all scenarios ie “just being monitored”?
Of course the positive side to it is that it would finally give a definite diagnosis but at the moment, with no symptoms and platelets only in low 500’s and being triple negative I am ok with the “not knowing”. I had a normal platelet count of 364 a few months back so I guess I’m hoping that things might just eventually calm down again…
I have another blood test due in 6 weeks time so I will await the results but I know if it’s still a high count then she will push for a decision on going for a bone marrow biopsy. Do you all think I’m being reasonable or unreasonable asking for it to be delayed for now? I’m torn between wanting to make the Doctors happy by going along with things but also doing what I feel is right for me at this time.
Thank you for listening to me and I send you all love and best wishes with your own journeys going forward….
Kim xx
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Purdy13
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hi I’m triple negative ET. Confirmed by bmb it is best to know it does not take long and not as bad as what I thought it would be At least you would know for sure I was only diagnosed in august last year I’m 69 good luck try not to worry xx
I had a bone marrow biopsy a couple of weeks ago for the very same reasons you have been advised to have one. It wasn't as bad as I thought it would be and trust me i hate medical procedures. I asked for whatever sedation they could give me which was only a tablet but it took the edge off.
The person doing the test was lovely and I had a nursing assistant calming me down too. It didnt take long and it wasnt painful as they also give you a local anaesthetic. Hard to describe the feeling just a strange tugging feeling.
Im still waiting for my results as its a specialist technique to interpret for our illness so I dont know what the outcome is.
Thanks so much for your kind reassuring words Scarlett, it’s just a rollercoaster of emotions isn’t it?! I’m just torn between “wanting to know and not wanting to know” about an ET diagnosis at the moment. If all they do is monitor anyway, whatever the outcome, then I’m struggling to be OK with having the BMB done at this time, not sure whether “watch and wait” would suit me better for now?
I’m so glad your procedure is over and done with now and wasn’t too traumatic for you. I’m keeping everything crossed for good news for you, please let me know how you get on xx
it sounds like the next step is to do a BMB so that you will have a more clear answer. The reason for doing it is not, however, to make the doctor happy. The reason to do it is for clarity in your own mind about your MPN Status. If you really are OK with just assuming you are Triple-negative ET then the BMB could be considered optional. Note that fear is not a good basis for decisions. Doing a BMB at this point would be prudent and could help inform your decisions going forward.
While I have never had a BMB, I have a JAK2+ PV that is very clear from the blood tests only. Note that I have already planned to do a BMB just a soon as there is a change in disease status or a need to know about the specific bone marrow morphology. It is not something I would look forward to but something worth doing in the correct circumstance. For what it is worth, if I were in your situation, I would definitely do the BMB. I would also get the best anesthesia option available.
We all have to deal with fear/stress/anxiety in managing these conditions. I have had a few other interesting health situations that taught me all about that. We each have to find our own ways to cope. I find that educating myself and thoroughly understanding the medical issues is empowering and reduces my subjective level of stress. When facing fear, I like this quote as a mantra.
"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain." Frank Berbert, Dune.
All the best to you as you move forward. Please do let us know what you decide and how you get on.
Thank you Hunter for your wise words and encouragement…. For me it is not the fear of the BMB itself, I am quite accepting that it will be unpleasant but still prepared to go through with the procedure from that aspect, it is more the fear of possible after- effects from it….. I keep thinking “what if nothing is wrong but the procedure itself triggers something off in the bone marrow”, “what if they hit a nerve and it affects pain and mobility going forward” etc etc… I also have Vitiligo so any trauma to the skin creates a new “white patch”, believe me Vitiligo isn’t nice to live with so setting it off in new areas isn’t something I take lightly….
I totally agree that BMB’s will provide definitive answers, but when I’m also told that my platelets are only mildly elevated and regardless of a BMB no medical action will be taken other than “watch and monitor” then I am questioning it if really necessary at the moment…. If my platelet count was a lot higher and I had symptoms then this would totally make me sway more towards getting the procedure done now, but as it is, with only mildly elevated platelets, triple negative and no symptoms, no action to be taken regardless of the outcome, then I am unsure about it all for now but will obviously keep an open mind going forward….
I also think the fact that I had a normal platelet count of 364 a few months ago has thrown me into thinking that maybe my case could be that of “reactive” so I would prefer my Haematologist to fully look into all possible secondary reasons before jumping straight in with a BMB…. She has said that in the case of triple negative if the BMB comes back as normal then it can’t possibly be diagnosed at primary ET as it will not meet the WHO diagnostic criteria, however, she has also stated that reactive causes can’t always be found and that in some people elevated platelets might just be “normal for them”….
Like I say there’s no doubt in my mind that a BMB will give a definitive answer, and I will definitely not rule it out completely, I am just struggling to want to risk possible side-affects from it when my individual case of only mildly elevated platelets does not seem to be a great cause for concern at present.
I will continue to mull it over and await my next blood results which may sway my decision one way or the other and will keep the group updated going forward.
As always thank you for the support and I wish you well with your own journey xx
Your reasoning and concern is certainly understandable. This is not a black-and-white type of decision. It is reasonable to want to rule out all secondary causes of the thrombocytosis before doing the BMB.
I expect you already know that iron deficiency without anemia can cause reactive thrombocytosis. Iron metabolism is complex and plays a role in PV too. People with PV are often iron deficient but not anemic. People with PV also almost always (95%) have the JAK2 mutation. I would certainly be wanting to understand what is happening with the iron deficiency as part of understanding the totality of what is going on.
It does help to understand a nit more about iron physiology. This video does a good job explaining it. Note that it is complicated.
Thank you Hunter, that’s very informative…. I would also like my Vitamin D levels checked too as I’m hardly ever in the sun due to my Vitiligo so I wouldn’t be at all surprised if that’s deficient too and I’ve also read Vitamin D can affect platelet counts….
The annoying thing is I feel as though it’s always me who brings up these things with my Haemotologist, it never comes from her. For example she did not do any Iron studies, it was down to me to ask for them and then ferritin came back low. I also only had a colonoscopy and endoscopy done at my own request as I was diagnosed with Irritable Bowel Syndrome many years ago (but that was just my GP’s diagnosis without tests being done) and so thought it prudent to get checked out incase anything was going on there that could be causing relating the high platelets. As it happens it looks as though he was correct with an diagnosis of IBS after having all other sinister things ruled out with all clear results for both.
My Haematologist has only ever done routine blood counts, liver and kidney function blood tests and the 3 gene driver tests. I still feel there’s probably lots more tests still out there to be done such as Vitamin D, hormones etc etc before going in with a BMB but I am a bit worried that she might misinterpret me as being a “know it all” and disrespectful towards her knowledge when I’m the one that keeps challenging asking about these things all the time ….
I think that overall I would just like peace of mind that everything routine has been checked before I have the BMB. I know these tests cost the NHS (UK) money so maybe that’s why some Specialists jump in early with a BMB to save spending lots of money on never ending other tests that may not show any problems?
I shall continue to plod on thoughand will try and make the right decisions at the right times for me. I will keep you updated xx
It is a fundamental truth that assertive patients receive higher quality care. Passive patients do not. The same is true for educated patients. We must always be our own best advocates.
You may want to consider seeking a second opinion from a MPN Specialist. MPNs are rare disorders and most doctors, including hematologists, have little experience with them. Consulting with a MPN Specialist is particularly important when you have a more rare form of a MPN or co-occurring conditions. Here is a list. mpnforum.com/list-hem./
A complete nutritional analysis is likely a good idea. My Integrative medicine doc did one. I was found to be deficient in Magnesium, Vitamin B/folate, and Vitamin D. The Vitamin D deficiency is likely related to having Neurofibromatosis Type 1. I also have GERD and take Nexium which can induce nutritional deficiencies. The evaluation also identified exposure to toxins. I was high on my mercury levels. Too much fresh tuna as it turns out. The panel I took was the NutrEval panel.
Good for you having those tests done Hunter, the information you have gotten from them is invaluable, as is all the advice you give to me and others on here too 👍
I find that certain foods…greasy, spicy etc etc trigger my Irritable Bowel syndrome off. For years I have been living on antacids (Rennie & Gaviscon here in the UK) to help with it all only to just recently find out that taking lots of antacids can inhibit your body from absorbing all the necessary vitamins and minerals etc it needs, that’s why they think my ferritin is low with iron deficiency.
So since all this came to light, only recently, I am changing my diet to anti-inflammatory options as best as possible. I’m wondering that if certain foods inflame my stomach and give me IBS then could it stand to reason that food intolerances could raise platelet counts too?
Again this is just my own speculation but another reason why I would like time to test all my theories out before going in for the BMB.
I am quite aware that despite all my alternate possibilities that I could still very well be Triple Negative ET, I would just feel happier investigating all my concerns thoroughly before heading down the BMB route. Hopefully my Haematologist will understand if I do explain all this to her and ask for more time before committing. I will know more when my next bloods are taken in April xx
Yes to inflammation causing reactive thrombocytosis. This is actually a normal response in the body. An anti-inflammatory diet is likely a very good idea. A bit more complicated with IBD, but it is what it is.
I have had very good success with using curcumin to help control inflammation. However, curcumin can have GI side effects. Given what you are describing, suggest a consult with an Integrative or Functional medicine doctor. These docs looks at the body in a holistic fashion, consider nutrition, and are more familiar with complementary health approaches. I have to pay out-of-pocket for this care but it is well worth the money. Here is a list of Functional medicine docs. ifm.org/find-a-practitioner/
Suggest that your hematologist should understand that you want to pursue a more comprehensive evaluation with less intrusive tests. Would also note that there likely are additional tests that a MPN Specialist would have already run. My MPN care team has certainly run other tests than you list (e.g., EPO, Prothrombin Times, LDH, CRP, von Willebrand Panel, cytokine panel, and more).
Hello Purdy13! I had a bmb a year ago that confirmed the diagnosis of CALR + ET. It was a breeze. Over before I knew it. Perhaps minimally uncomfortable at one stage but that subsided.
Thanks so much for your kind words of encouragement, I’m more petrified of the procedure “triggering off” problems with my bone marrow if there isn’t already a problem, but that’s just my anxiety levels going off the charts…. It will all come to a conclusion in the end I daresay so I will do my best to plod on with it all. I wish you all the best with your own journey x
My first bmb was fine, no problem, hardly any pain during and after, results showed ET. My last one at the beginning of January was different, painful during and after (different doctor and they caught some nerves) very painful for a few weeks but I’m ok now. Results showed ET transforming to myleofibrosis. It all depends on the doctors experience. A bmb would give definite results.
Reading your post was like reading about my own journey and diagnosis it’s almost identical ❤️🩹. My journey began 8 years ago I’m now 62 and triple negative ET. I had the biopsy a bit uncomfortable for about 10 minutes but then it was fine. I took the afternoon off and then back to work the next day. The one thing I would say is that my biopsy came back as probable ET so it was not 100% conclusive. It doesn’t actually matter to me. I was monitored 6 monthly by my haematologist have been on aspirin only. My counts hovering about 600 or thereabouts. I’m 62 now and on to quarterly monitoring my count is now 700 and my haematologist has called me back and told me it’s likely time to start Hydroxy. I feel fine, after 8 years I just accept the next step and go with the flow. I look at it this way triple negative ET is not going to change what I do with my life.
The only thing it has changed is that I try to exercise, loose weight and eat more healthily which will be a benefit in the long run as If I hadn’t known I would have continued in some unhealthy choices and patterns of behaviour .
So enjoy your life try not to stress be positive and slot ET into your life as the minor inconvenience that it is now and live in the moment. I wish you the best with your own journey.
Hi Sue, what a lovely positive uplifting person you are. I can only hope to be as strong as you should my own diagnosis prove to definitely be that of ET.
I’ll be honest and say that since finding out about my high platelets just over a year ago it has completely stressed me out. I think it’s just the shock of feeling absolutely fine but then being told there could be a problem and not a very nice one at that.
I spent the first 6 months last year constantly upset and in meltdown with all the “what ifs”. The last 6 months however I feel as though I’m finally pulling myself together as I know there are people out there with a lot more serious and life-changing illnesses than this.
I think I would just like a load of good luck and a crystal ball to hopefully tell me all’s clear without having a BMB done….but don’t we all!
I know a BMB would give a more definitive diagnosis (yet that doesn’t seem to be the case with you as having come back as “likely” to be ET so I will have to be prepared to be open minded about that) but I would just like more time to be monitored and all possible reactive causes looked into first before going ahead with it.
As it stands my platelets sit at low 500’s, I’m experiencing no symptoms and have the knowledge that I’m triple negative for the three main driver genes. If my platelets remain high I feel that a BMB will be inevitable at some point, but I just don’t want it done unless absolutely necessary and after reading that different Specialists have different views on these things I just get totally confused and overwhelmed by it all at times.
I will be sure to update on here with more news as and when there’s more to tell and in the meantime thank you so much for your kind words and support, it really does mean a lot. Sending love and best wishes to you and everyone else going through this too….
I had the BMB in December and it was able to confirm my diagnosis. (JAK2/ET) and the procedure was not bad at all. (Actually pretty easy) I was offered and took a mild sedative and they numb the site so there was more pressure than pain. I personally operate with less stress when I have as full of a picture as possible in any situation and the BMB gave me more info. and at least I know now what I am facing and a course of treatment. The stress in itself causes inflammation in the body which in itself is not good for your overall health/well being. Do what you feel is right for you and don’t let the fear of the unknown drive your decisions. Listen to your gut and you will make the best decision for you.
Thank you so much for your kind words and encouragement. Can I ask if you knew you were Jak positive before the BMB from a blood test or were you told you were triple negative but the BMB then went on to confirm the ET diagnosis?
The set of original blood tests indicated a JAK2 mutation and that along with platelet counts pointed toward ET. However the BMP helped to confirm. It was explained to me that the blood tests are a wide net in the diagnosis. The BMB narrows down what is occurring. If your doctor feels it would be beneficial in your diagnosis then consider that in your evaluation.
After initial diagnosis with a Hematologist, I asked my primary to refer me to a MPN specialist so I was referred to a Hematologist oncologist. He has run additional tests to fine tune the diagnosis and found I am borderline PV (I am so glad I made this move even though the original Hematologist was fine and made the original diagnosis) This is all a new diagnosis for me (first appointment in December) and I am on 81 mg of aspirin and will be starting Hydroxyurea in the next few days when the drug arrives by mail. This site has been very helpful as I embark on this new journey.
My thoughts are with you on this journey Idre. It definitely sounds as though you have made the right decision for you in being referred to an MPN Specialist. I’ll update on here once I know more….x
Kim - I can only underline what's been posted here. I had a bmb 3 years ago which was a bit uncomfortable but tolerable. I was jak2 positive and have pv. That was the beginning of a journey which hasn't been too bad. You need to get the right information on what's going on in order to develop a plan and you need an MPN specialist. As posted earlier, be your best advocate and question/research everything. Good luck. Saltmarsh
I had no idea. I went for my annual physical and the bloodwork showed platelets and rbc were elevated so I followed up with a hematologist. A few visits later I had the bmb and the rest is history. Please trust me when I tell you that, although it was tough to digest this diagnosis at first, things quickly came together and I've been doing well - as will you. Initially the rbc was controlled with phlebotomies and in preparation for knee replacement surgery last year I started on hydroxyurea to bring platelets down to the level desired by my surgeon. I'm still on it and have stopped the phlebotomies due to the rollercoaster effect on rbc. Keep active, eat well, limit your alcohol, drink lots of water and, as needed, rest. And see an mpn specialist. You will be fine and I say that sincerely. Saltmarsh
Can only echo the great advice already given. While a BMB might not be 100% necessary, I am of the opinion that more information is almost always better. My MPN specialist strongly encourages his patients to have a BMB to; 1) confirm diagnosis and 2) provide a baseline for future comparison...
The procedure itself was not pleasant but bearable. If sone by a knowledgeable practitioner the chances of something going wrong is miniscule...
Good luck in your decision - it does sound like a BMB will provide some peace of mind around diagnosis confirmation.
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