A few months ago I noticed on my GP portal my platelets have been high for a few years and asked my new GP to investigate. She repeated bloods and platelets were 547. Haemoglobin fine, mcv ok but iron binding and transferrin index showed iron may be low so she has given me 3 months of ferrous fumarate to see if thrombocytosis is reactive .
Since then I have asked for a print out of all my blood results as far back as they go. They showed high platelets almost every single time since 1998. Levels between 450-650 with a couple of normal readings 370ish.
Could thrombocytosis be reactive for that long?!
I have been iron deficient in the past and the cause has never been identified.
My concern is if I get fobbed off again with iron deficiency being the cause. I've read lots of posts on her and it's clear that many ET sufferers have low iron too. Is it normal to run alongside ET, if so why do GPs rule out ET if iron is low?
Also could it still be ET if occasionally the platelets fall into normal range? They have been constantly high for the last 6 years.
I feel more tired than normal since being on iron too
Advice would be great please x
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Jessiexx
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My elevated platelets were spotted by my new GP who looked over previous ones going back three years. All were above normal range but not excessively. He then waited 3 weeks and repeated but high again and so referred me to a haematologist. All became clear fairly fast. I would recommend you get a referral to an haematologist with knowledge of MPNs just to check things out
Thank you for your reply. Yes I would like a referral regardless but GP needs to agree to it. Fingers crossed after my next set of bloods she will agree. My old GP ignored the high platelets for years and put it down to low iron every time, I hope my new GP is on the ball. Stay well everyone x
I was diagnosed as having ET in February. The high platelet count was noticed when I was found to be needing a hip replacement, and the orthopeadics asked haemotology to see if it would be an issue for my operation. This is what then led to my ET diagnosis. The haematologist told me they had checked back over my records and think I have had the gene mutation for about 10 years. Looking back myself then, I could see it was similar to yours over most of those years, but went up to 700-900 around 3 years ago.
So yes, it can be around that long, in their opinion. This obviously doesn't mean that you have ET, as a higher count can be due to infection.
Interestingly, as a 52 year old, my doctor had said my platelets were 'a bit high' last year, but said it was probably due to the arthritis in my hip. Haematology however, think that my hip has worsened so young is due to the ET!
I never queried my blood tests, so my view is to ask for a referal to haematology, where the test for the gene mutation is easily done...and it will get investigated, rather than left to be.
Fatigue is most certainly a symptom of having ET, but don't presume you have it as it is rare, and the cause of your raised count could be other things.
I can completely understand your concern & how deeply frustrating it is to feel your concerns are not being heard. Is your GP aware of your suspicion that you may have ET?
I would go in armed with some info from the MPN Voice website and say you want a referral to a haematologist who has knowledge of ET & other MPNs, as it is so rare & therefore easy to miss.
I've mentioned my situation on the forum before; that I'd had 10 years of elevated platelets (without knowing) and a host of health issues that were being explained away as stress from life ) work / just a virus. It was only after changing GP surgery, and a particularly tricky time with health that my platelet levels were looked at and I was referred to a haematologist. ET JAK2+ diagnosed 2018.
Also, twice across this time my platelets dropped into the normal range.
I hope that perspective helps. As a few of us who have had many battles in the past too now see that we have to fight for ourselves to be heard; to not give up fighting for our case as we know our bodies!
I too had high platelets since 2015 and not picked up till 2019. Please demand your GP refers you to a haematologist who will look into it with their specialised knowledge. Good luck
Sorry to hear that you’ve been fobbed off. It’s very frustrating to feel like nobody is listening to your very valid concerns.
Remember that your GP’s job is to take care of your health, and your mental health is just as important as the health of your blood. If not being tested for genetic mutations is causing you stress or worry then your GP’s job is to refer you.
You don’t need to justify your request, simply state that you aren’t satisfied with the answers you’ve had so far, it’s causing you to feel concerned, and you want a referral to haematology. You are the only person who can truly advocate for you!
Knowledge is power and whatever the results show will bring you a step closer to taking care of your health as best you can.
I personal think guess work is never accurate. You really need a BMB fir proper diagnosis. That's the only way to know your condition and receive proper treatments. Hope you'll be able to be treated by a MPN specialist.
My story is very similar to yours, I changed gps after receiving poor care regards to missed diagnosis and feeling fobbed off about and discovering that my b12 and vit d levels were horrendously low, I then met my new gp, who reviews my blood work over 12 yrs as far back as she had available, she was concerned that like yours mine was always red flagged except 2 occasions (both of the normal readings were during the third trimester of both my pregnancies) apparently it’s normal for the platelet count to lower at this time. My GP was concerned and spoke to the haematologist on call, I was seen by him the following week and he told me there and then that he was certain I had ET, he took more blood and ran the genetics testing and a few weeks later the ET Jak 2 diagnosis was given.
Go with your gut instinct and request that you be referred to a haematologist. Take care x
Thanks for your reply. I'm so glad your GP investigated for you and you were seen quickly. Interesting your platelets dropped into normal range a couple of times too. My gut instinct tells me something is very wrong and I won't let it rest this time. Take care x
I think it’s important to see if resolving the anemia corrects the platelet count. If it does, it’s likely reactive and I would chase down what is causing the chronic anemia. But if your counts don’t return to normal when the anemia is corrected, get that referral and testing for ET. So many of us have taken years to get diagnosed. For me, it was ten years of high counts before it was picked up and another couple years before I finally had a diagnosis. Best wishes and keep up posted.
There is a considerable lack of knowledge regarding MPNs because they are rare disorders. many docs, even hematologists, know very little about them. Given the history you have described, you absolutely should seek assessment/care from a MPN Specialist (not just a regular hematologist). Here is a list mpnforum.com/list-hem./ .
There a few key things to know as you start on this journey.
Iron deficiency can cause thombocytosis. Dysregulation of iron metabolism can be part of a MPN as well. Note: the fact that you are iron deficient but not anemic is a clue to what is going on. MPNs do not always fall neatly into ET or PV. It is more like a continuum of MPN states. Fatigue is a common symptom of iron deficiency and MPNs. It is complex and hard to sort out, which is why specialist care is indicated.
Platelet levels can cycle by as much as 100K in a single day. Some people with ET/PV will have their platelet levels cycle in and out of the normal range.
The first step in the diagnostic process should be to check for the JAK2 mutation. About 50% of people with ET are JAK2 positive (95% PV are JAK2+). This can be done with a simple blood test. This testing should be automatic given your history. There are two other driver mutations (CALR, MPL) that can be tested for, but JAK2 is the most common and the first to rule in/out. Your GP can easily order this test.
Assertive patients receive higher quality care. Passive patients do not. It is up to you to determine whether you need to seek specialist care (which you do). It is both your right and your responsibility to advocate for receiving the care you need/deserve. Your GP can either facilitate or hinder you receiving appropriate care. You have to decide what care you need to receive then ensure that you receive it. Your GP works for you, not the other way around. You are in charge of your medical care, no one else.
I hope you get the answers you are looking for soon. Meanwhile, all the best to you,
Thank you for your reply. I'm impressed by your knowledge and hope to research as much as I can too. Very interesting about iron dysregulation and MPNs. I couldn't find anything about this on the Internet. All the best to you too
Where the research has headed on this is the link specifically to PV and iron metabolism. While it may not apply to you, it is important to understand iron metabolism and the role it plays. Stay aware that there is a spectrum of MPNs between ET and PV. Here is a very good article on this topic. nature.com/articles/s41375-... .
There is more in the literature, but this may be enough to give you a general idea to get you started.
Since your are dealing with potential iron deficiency, it is important to understand the terms involved and what the tests are.
Anemia = deficiency is red blood cells (erythrocytes).
Iron Deficiency = inadequate supply of iron in your body. Can happen for different reasons. May or may not result in anemia. You can be symptomatic for iron deficiency without showing anemia.
IRON TESTS
•Serum iron. This test measures the amount of iron in your blood.
•Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.
•Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.
•Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.
•Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.
Interesting l have thalassemia trait l am a carrier only thankfully not having the disease. As a carrier l have smaller red blood cells that can cause a mild anemia. it does not normally require medical treatment. But l was given iron supplements as a child as doctors misdiagnosed the condition. Trait carriers cannot take iron supplements unless a special blood test (serum iron or serum ferritin) shows an iron deficiency. My point is there are many added variables to us all and our blood results
Very good point. It is why consultation with a MPN Specialist is so important. Many docs just do not have the knowledge base to properly treat these rare disorders.
Thank you all so much for your replies. You have given me so much to think about. I have written to my GP today to ask for the JAK2 blood test. I think she will find it hard to come up with an argument to refuse. I will certainly keep you updated. Thank you all and take care x
Hello. It could still be ET even if the platelets occasionally fall into normal range. I've had CALR ET for 16 years and my platelets have never gone above 550k and my platelets have fallen into normal range a couple of times. You have a story similar to many of us where our GP ignored our high numbers for years.
Once I became iron deficient and my platelet count jumped 100k but it went back down when I took iron for a couple months. Also, birth control can somehow effect some of the iron panel results. And my previous hematologist always made me stop my iron pills for a week before my bloodwork so that the pills wouldn't effect the results.
Hi Jules, you certainly have enough ammunition for a haematology referral. Just show your GP the above replies.
Something to point out is that you require a blood test for Myloproliferative neoplasms. This will cover a wider range. I do not have the mutated Jak2 I have the mutated CALR Gene.
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