I’m getting worried as my platelets have been rising continuously for the last 9 months
They were 489 but now at my blood test yesterday they are 690
Does this mean possible progression or maybe hydroxy is not working ( I’m on 1000 mg daily ) ?
I’m not looking forward to an increase in hydroxy if that’s suggested .
I’m due to see a new haematologist on monday at a change of hospital
I’m quite an anxious person and it’s affecting my sleep and I’m awake worrying about it
I noticed some other results are abnormal on my test but I don’t understand what they mean and I’m worried that they may mean something is going on and I’m getting really uptight
Has anyone else felt like this
Thankyou
Written by
sweetpea19
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I’m so sorry for you can’t answer your question but ask at your appointment. About these questions write down what’s worrying you so you don’t forget at your appointment I was also like this when I was diagnosed last august wishu well x
Sorry to hear that the increase in PLT is stressing you. It is a worry we all understand. When my platelets jumped up into the 900s, i was concerned too. In my case. it was due to reactive thrombocytosis caused by phlebotomy-induced iron deficiency.
There are some things to keep in perspective. It is normal for PLTs to vary by as much as 100K in a single day in response to what is going on in your body. There are a number of things that can cause reactive thrombocytosis, injury, bleeding, infection, stress, and more. Hydroxy suppresses the production of blood cells but does not change the body's response to the things that trigger an increased production of blood cells.
Since the increase in PLT seems to be sustained over time despite 1000mg of HU, you are wise to investigate what is causing it. It could be something secondary that could be addressed easily. There are other possibilities that need to be ruled out. It may be that you a refractory to hydroxy. Hydroxy does not work for everyone. Some are not able to achieve their treatment goal at a tolerable dose. You may want to discuss other treatment options/alternatives to an increased dose of hydroxy. Pegasys is another primary treatment option for ET. Anagrelide is a second-line treatment option.
It is understandable that you are concerned about progression. I had the same concern when my PLT spiked. This is a discussion to have with your new hematologist, who hopefully is a MPN Specialist. If not, you may want to consult with a MPN Specialist about your case. In my situation, we did several things. 1. We rechecked my JAK2 allele burden = minimal increase. 2. Did a comprehensive genetic profile looking at all driver/non-driver mutations = JAK2 + NF1, which we already knew were present. 3. Nutritional analysis = significant iron deficiency. 4. We considered a bone marrow biopsy but decided not to since it was apparent from the other studies what was going on.
Hopefully the hew hematologist will be able to help you sort out what is going on. Meanwhile, know that you will find the answer and put a plan into place once you have things sorted.
Thankyou so much for your response . I’m thinking maybe hydroxy isn’t working so well for me as my platelets have not got below 475 in the last 7 years .
I will ask about other treatments with my new haemotologist
Hopefully she can get to the cause of the continuing rise in platelets.
Do note that some MPN Specialists use 600 as the PLT target when a hard number is used. Others are now using the delta (degree of change) as the target. Many have moved away from trying to make PLT "normal" as there is not evidence to support the value of this target for all people with ET. Each person needs an individualized goal and treatment plan.
Do please let us know what you decide and how you get on.
thought I would let you know how it went with my new hospital appointment. I saw a registrar who was very willing to listen to my questions and she gave me an examination which was fine . The other blood results which came back abnormal were not anything concerning just a little elevated We’ve decided to do a slight increase in my hydroxy and see how that goes. I now have a nurse I can contact if I’m worried about anything and am seeing her again in 2 months time . I was happy with that as I’ve not seen my other heamotologist for 2 years, just 3 monthly phone calls and no real contact with her if I had any concerns .overall I feel happier and it’s a good start , Thankyou for your replies
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