Just a question

[Josned23]

Hi everyone . I came across this forum whilst reading up on high platelets. My platelets are 700. The doctor asked haematology regarding my platelets to which they replied that because I’m anaemic this would be the reason why. I had transfusions at the beginning of the year which made me no longer anaemic but yet my platelets remained high. I am now anaemic again (iron deficiency anaemia). I have had symptoms of what’s seems like bone pain in my legs and back for months now with pins and needles and peripheral numbness in waking in the morning. They did blood tests for RA which came back negative. I wondered if I should be concerned about the platelet count? The doctor just keeps giving me painkillers but not giving me an explanation fully on why I am anaemic. Sorry if my question isn’t relevant, just looking for possible advise. Many thanks 😊

[Dovme]

Hi welcome to the forum

I totally understand how you must be feeling. How frustrating. Is there anyway you can switch doctors or at least get a face to face referral with a haemotologist?

If your in the UK you could try PALS patients advocacy service - they may be able to help you

nhs.uk/common-health-questi...

[Josned23 in reply to Dovme]

Thank you for your reply and the link. I wasn’t sure if my bloods indicated a referral to haematology since they brushed it off before. That’s why I looked into it myself but obviously don’t know enough on the subject to be certain. I have read that platelets over 450 are classed as elevated and should be investigated. I know that they can fluctuate for many reasons too ie infection, stress etc so I may be “barking up the wrong tree”. I’ll try to get a second opinion. Thanks for your help

[Paul_1971]

Hey

As Dovme says seek alternative advice.

You definately want to find out why you keep becoming anaemic.

I think there is some truth that your platelets can elevate when you are anaemic as the body produces more platelets when you lose blood through bleeding, so it might be being tricked into producing more by you being anaemic (i.e. it thinks you are bleeding).

Make some calls and make a nuisance of yourself...

Hope you get some answers

Paul

[Josned23 in reply to Paul_1971]

Thank you Paul. Yes, that’s what haematology advised. And that makes sense to me. I just didn’t understand why my platelets remained high when I wasn’t anaemic. And no idea on why I keep becoming anaemic. I thought after my infusions, I would be back on track. I’ll just keep asking the question why. The answer is normally that some people just are. I guess it wouldn't be of concern to me if I was feeling well but the fact that I feel unwell is why I’m searching for answers.

Thanks for your help.

[hunter5582]

As other already indicated, it is time to consult with another hematologist. specifically one with expertise in MPNs. Here is a list. mpnforum.com/list-hem./ .

If you want answers, do whatever it takes to see one of these docs.

To address a few of your questions. Iron deficiency can cause thombocytosis. When the iron deficiency is addressed, however, the thrombocytosis should resolve. The fact that the anemia has persisted indicates something else is going on. Some MPNs are based in dysregulation of iron metabolism, which is not to say that this is what is going on for you. It will take a comprehensive evaluation by a knowledgeable hematology team to get to the bottom of this.

You are indicating some common MPN secondary symptoms. Given the thombocytosis, which may be secondary, I would think that one step will be to check you for the common MPN driver mutations (JAK2, CALR, MPL). There will likely be additions testing needed to get to the bottom of this. I expect you will have to advocate for yourself to get the medical care you need in the current COVID environment. It can be done, but you will likely have to push to make it happen.

All the best to you.

[Josned23 in reply to hunter5582]

Thanks so much for your reply and valued advice. What is it that flags up to a doctor that you ET? Is it the Hugh platelets alone or are there other things going on with the bloods? How did you get your initial diagnosis? Wow, I have just read your background! You have been through the mill!! I would agree that specialists do not look at things holistically. Everything is investigated separately and never tied together that the reason one thing is going on could be because of a knock on from something else. It does appear that I’m going to have to really push them for some answers. Thank you once again for your help!! Much appreciated.

[hunter5582 in reply to Josned23]

I was originally diagnosed prior to the genetic testing that is available now. The ET diagnosis was based on the thombocytosis in the absence of any other cause. I was later found to have the JAK2 mutation, but not until many years of having the ET diagnosis. When the ET progressed to PV back around 2013, my old hematologist missed it and continued to treat me only for ET. Fortunately, no harm came from this as I have a relatively indolent MPN.

I have had more trouble with the secondary inflammatory issues related to the JAK2 mutation. That ultimately lead me to adopting a more holistic approach to my health and taught me to always look for links between the things I experience. Sometimes things occur independently, but there can often be underlying links that get missed. Consultation with an Integrative/Functional Medicine provider can be a really big help. This is particularly true when you are looking at systemic issues that other docs are not clear about. Many docs do not receive much training in basic nutrition and nutritional disorders. There are nutritional and other complimentary health interventions that can be very helpful, but you need a doc who understands this and how these interventions interact with medications and other interventions.

Hope you get answers soon. All the best to you.

[Josned23]

Many thanks for that

[Wyebird]

Hi Welcome, I’m afraid I don’t think much to your haematologist. There is a reason for your symptoms. I’m anaemic ( Low to moderate ) my heamo has never suggested that my high platelets are the reason.

I think it’s time you asked for a second opinion. Are you in the UK.

Good luck with finding answers.

[Josned23 in reply to Wyebird]

Hi there

Thank you for your reply. Yes I’m in Edinburgh. What was your diagnosis?

[Wyebird in reply to Josned23]

Hi, I’ve got ET x

[Josned23 in reply to Wyebird]

Would you mind telling me how you got your diagnosis. Did you have symptoms? What were your bloods? Sorry to ask, don’t feel obliged to answer. Just trying to get a picture. X

[Wyebird]

Hi, mine was a fluke. I had a stroke aged 50 so ever since I’ve had annual blood tests. Platelets were raised and repeated two weeks lateR. Still raised and ignored. Then I had minor surgery and a blood test before hand. Felt very light headed prior to surgery as I had to come off clopidogrel. When home and recovering I was taken I’ll and taken to A and E . Consultant said all was fine but platelets elevated could be due to op. I said they’d been like it for 6 months he said go to GP and query. That I did. Another blood test showed again raised platelets. -result I was sent to a heamo. He did more tests

I have a mutated gene. Stroke was not related.

[Josned23 in reply to Wyebird]

Thank you!

[Mollymag2]

It's relative alright. You should get a response to your question. Pain killers are not the answer. I get annoyed when I've been in situations such as you describe. It's so important to pursue the cause, not just relieve the complaint. Keep asking until you get an explanation. If not maybe try someone else. I had an an awful time trying to determine the cause of ongoing itching/rash. I kept going back and back until finally they realized they weren't going to pacify me with different treatment; they finally did an in-depth blood test and that led to the discovery that I had Essential Thrombocytosis and an now under case of a hematologist/oncologist who has brought my high platelet level into normal range. Keep advocating for yourself - no one else cares as much as you do about your health/life.

[Josned23 in reply to Mollymag2]

I will do! Thank you 😊

[Threelions]

It should be quite straightforward.

If a series of blood tests over a period of time shows elevated platelets then you should be offered a test for ET.

That’s exactly what happened with me. Very straightforward .

All the best & let us know how you get on👍

[Josned23 in reply to Threelions]

Thank you 😊

[Lifam]

I agree with Hunter 100%, you DO need a MPN specialist, may be a bone marrow biopsy to make sure what your problem is, taking painkiller is not the answer for high platelets. You need a proper specialist for it. Hope you'll be on the right track soon.

[Josned23 in reply to Lifam]

Thank you!. I take the painkillers for the pain in lower back /hips /leg/feet pain. Still haven’t got an answer as to why I have the pain and of course the anaemia but will definitely be pushing for answers now.

Appreciate all the help from everyone!