essential thrombocytosis : I was diagnosed with... - MPN Voice

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essential thrombocytosis

glyndale profile image
16 Replies

I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have myelofibrosis which apparently is quite serious, can anyone help . Thanks.

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glyndale profile image
glyndale
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16 Replies
Mazcd profile image
MazcdPartnerMPNVoice

Hello glyndale, it would be best to discuss this with your haematologist, or your haematology nurse specialist, as they have your medical records and know you and your ET history. I note from one of your posts from a few months ago that you were going to have another bone marrow biopsy, did you have this done and were the results discussed with you? Best wishes, Maz

glyndale profile image
glyndale in reply to Mazcd

Hello thank you for replying, I can't recall exactly the results but was advised to carry on with aspirin, yesterday when I spoke to him M y platelets were near normal and my hb was slightly low but hb has been low for several years.i have no new symptoms as such so he will see me again in 3 months.

Mazcd profile image
MazcdPartnerMPNVoice in reply to glyndale

I am sure that if your ET was progressing to MF your haematologist would have discussed this with you when you spoke to him yesterday, but as you are worried, you could give him a call, or the nurse in the department, just to put your mind at rest. Maz

glyndale profile image
glyndale in reply to Mazcd

yes I will do he did suggest another bone marrow biopsy if I wanted one but as I am mainly symptom free he is going to keep monitoring me.

Aneliv9 profile image
Aneliv9 in reply to glyndale

What is the range of your hemoglobin? Is it lower than your previous numbers???? Or always was somehow stable in a lower range?

glyndale profile image
glyndale in reply to Aneliv9

not sure but I think its stayed stable for quite a while.

Aneliv9 profile image
Aneliv9 in reply to glyndale

Do you observe a decrease on your counts? Your platelets are in the normal range due to a specific drug for ET? Can you be a little bit more clear?

glyndale profile image
glyndale in reply to Aneliv9

hello ,the only drug I take is aspirin, my platelets returned to normal,some months ago and my hb has been slightly low for a while.

Aneliv9 profile image
Aneliv9 in reply to glyndale

Your platelets returned to normal without any additional drug? Cause aspirin doesn't decrease platelets.

glyndale profile image
glyndale in reply to Aneliv9

yes I only take aspirin and an anti depressant .

Aneliv9 profile image
Aneliv9 in reply to glyndale

If i was you, I would call my doctor tomorrow asking him about this observation. His answer is valuable for your peace of mind

glyndale profile image
glyndale in reply to Aneliv9

ok thank you

Aneliv9 profile image
Aneliv9 in reply to glyndale

Let us know!

Aneliv9 profile image
Aneliv9 in reply to glyndale

I am sorry, but i see that at least the last year,you post the same question about platelets and low hemoglobin. So now i am curious to why don't you already have an answer to this same question.!

Otterfield profile image
Otterfield

Is your haemoglobin so low that it's affecting your daily life? If it is and you are worried then it might be good to accept the offer of another BMB, just to set your mind at rest.

As you, say, MF is serious, but there are some excellent drugs now. Many people live well with it. When I was diagnosed, one consultant told me "People live for a long time with this."

glyndale profile image
glyndale in reply to Otterfield

Thanks for your reply,no don't think it's affecting my daily life,I do get tired but I don't sleep very well,but apart from that I haven't any symptoms.

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