Hi
I am interested to know if those prescribed hydroxycarbamide had really high platelets when prescribed.
Can anyone who is on it give me an idea of how high your platelets were. Also interested in anyone is JAK2 POSITIVE.
I really don't understand what this disease is and my Haematologist hasn't really explained it.
Also I need to go on iron as my endocrinologist requires me to. Is there any reason why I couldn't????
Hi I have ET (essential thrombocytemia) and am Jak 2 Positive. i take hydroxycarbamide prescribed to help keep my platelets under control and take low dose aspirin too. Although platelet levels are a factor there are also other factors taken into account when prescribing it such as other risk factors. For example my platelets may not have been considered that high when I was prescribed it but I was diagnosed following a portal vein thrombosis which increases my risk.
You don't state what MPN you have been diagnosed with? I don't want to make assumptions you have ET just because you have mentioned high platelets and give wrong information. Maybe you could clarify?
I strongly recommend a couple of Things. Try and see your haematologist again. It may be helpful to write a list of questions you have before you go. Also go to the MPN voice website which gives so much useful information about the three main MPN,s and may help also to inform what you want to ask. It is mpdvoice.co.uk.
Sorry without knowing your diagnosis difficult to say more, but hope this helps. This forum is great it provides so much info and support. I am sure others will respond with useful info too.
Best wishes
Liz C
Hi liz
I don't know what the diagnosis is. All I was told was that I had myloprolifetative disorder. JAK2 positive and high platelets.
My endocrinologist wanted me on iron to bring my saturation level up so that her treatment would work better with good saturation level..I've been really poorly with my thyroid for almost two years.
My Gp thinks the Haematologist has jumped the gun as my platelets had only just risen above 500. He said he thinks my thyroid is affecting my platelets as when hypo and not in right level it can make your blood go sticky and increase cholesterol.
So I am having second thoughts about the hydroxycarbamide and wondering if I should have waited until my thyroid was right again.
Up until my thyroid started going wrong I had been on aspirin only for 7 years and the platelets had remained stable in low 400.
Thank you for your reply.
I'd be very grateful if I could gain more information. I have dr appointment on.Fri and need to discuss all this with him.
I have Haematologist appointment next Tues
Hi So it seems as if they think you have an MPD but have not confirmed this in respect of which one. This may be for reasons Paul42 below has said. My doctors ruled out other possible causes of platelets rising and my diagnosis was confirmed after quite a few blood tests and a bone marrow biopsy. Even with my risk factor the thrombosis I was not put on hydroxy straight way, initially just aspirin it was only when my platelets began to rise a bit and because of my clot I was put on hydroxy. I am aged 54 had not long turned 52 on diagnosis. as it is I am now only on 500mg twice a week.
I think you are right to question with the haematologist if hydroxy is right for you now. Ask him/her to explain reasoning for their suggestion and what are other options. Ask if a wait and see for a short period is reasonable whilst try and resolve thyroid issue, what are the risks. You have right for this all to be explained to you. The more info you have the better decision you can make. It is hard, I know esp at beginning.
I understand complications with other medical factors as I have other medical issues too. I don't have confirmed thyroid issues at moment but have been borderline under active thyroid on recent tests. I to wonder if any connection.
Sorry can't help on iron front. Do let us know how you get on and feel free to private message me if you want to chat.
Maybe attending a forum if you can get to one of ones Maz has just posted about, would help. I have applied to attend London one this year as think is will be good to meet others with MPN.
Take care Liz C
Thank you so much liz for your lovely reply.
It's good to know that.
I think I will challenge my Haematologist as to why I've been put on hydroxycarbamide when for the past few years since my diagnosis my platelets have remained stable and nit overly high, by just taking low dose aspirin.
It seems more than coincidence that my platelets have risen since by thyroid became unstable after being excellent for more than 28 years.
I have Gp appointment Friday. Consultation with endocrinologist afterwards then consultation with Haematologist next week so hopefully I'll be able to get answers.
What level were your platelets at when.prescribed hydroxycarbamide???
You only have to take it two times a week?
Thank you once again
Rose x
Hi Rose I think that's a good strategy. IF I recall they were just under 700 but the principal reason for it was my increased risk of developing another clot. I was originally on 500mg Mon, Wed & Fri but as blood test showed decrease in white cells and platelets within normal range it was decreased to 500mg twice a week. Will be reviewed when I go back to hospital early May.
I have just had to book an appointment to see my GP as he did a blood test to check my thrYroid and apparently it's confirmed I have a problem. So may well come to you for advice re thyroid once I have seen him! Do keep in touch and let me know how it all goes. Good luck Lizx
Thank you for all that information.
It's handy to know. I do know that my WBC which was above range have now fallen and very much in range.
If you go to your Dr about your thyroid results, be aware that your Tsh should be under 2. Anything higher and you are mist definitely hypothyroid.
Let me know how that goes.
If you like I can let you have my email to keep in touch that way.
Take care
Good luck at Dr's xx
Hi, good advice from Liz001. I have ET one of the MPN's and am Jak 2 positive. My platelets had been creeping up and when they reached 600 my Haem at the time wanted to start HU. I was not happy so changed Haems and now have a brilliant one in London. It's scary stuff that can be managed but this forum is really good for support from many people with experience of this for years and coping. I have just started HU as I have surgery scheduled for a knee replacement and they won't consider you if your platelets aren't under control for fear of blood clots. My platelets were just hovering around the 1000 mark when I started. Hope this helps. Good Luck. JW
Thank you for your reply. I have answered above on lynn reply
Hi. Who do you see in London? Did you need to go on.hydroxycarbamide at all?
Thank you
I see Professor Clare Harrison at Guys Hospital. She's a specialist in the MPN field and she's brilliant as are her team. JW
Thank you for letting me have her name.
Do you know if she's a big fan of hydroxycarbamide???
My gut feeling us I've been.put on it too soon.
My Gp even said they've jumped the gun and it could well be because my thyroid is still not right.
Thank you very much
Prof Harrison decides which drug is best depending on the MPN that you have. It's your choice whether you go on Hydroxycarbamide but depending on your platelet count sometimes the alternative is no choice at all. I put off going on it as I have been pretty healthy but because of the knee surgery I no longer have a choice. A good haem will not force you to take anything but it's important to find one you trust as they're all different with very different specialties. It should be someone who understands MPNs. What was your platelet count? Cheers JW
Hi again.
When Haematologist decided to put me on hydroxycarbamide my platelets were 518. So not drastically high.
I still feel my thyroid is playing a big part in this
Thanks again.
I'm going to show my Gp the name of your specialist
Rose
Sorry Jamie
I've just re read you reply and see that your platelets were high and due to knee surgery have just started on.hydroxycarbamide.
Is it giving you hot flushes?
Not so far, thankfully
What have they suggested your platelets should be before you have an op
My husband diagnosed 3 years ago with polycaethemia vera and JAK2 positive. Platelets at that time 875. Started on HU and low dose aspirin immediately, now platelets down to 275. He started on 1 a day gradually increased to 4 a day and this seems to have been stable for the last year and a half. Hope this helps
Thank you for your reply. I have answered above on lynn reply
Hi,
All good advice above. I was diagnosed with PV 9 years ago and started HU 18 months ago when my platelets were 850 and I was coming up to the age of 60. Which is another marker for when you need to start it. As Liz Said there are other factors to take into account, not just platelet level.
The MPN website is a mine of information.
Judy x
Hi
I'm jak2 positive with PV
I never took my counts to start with just trust the course of treatment the Dr prescribed. Started on aspirin and venesection, but then replaced the aspirin for clopidogrel. He did mention my platlets went high so started hydrox, high dose to start then gradually 1 a day. Not had a venesection in over a year it's controlled with meds.
Last year for personal reasons I stopped taking my meds (not intentionally) and within 2 months my platlets had gone to over 900 and I was really poorly, they did also want to put me on short course of iron tablets. I started taking the hydrox again regular on the dot but held off on the iron, within 2 weeks my bloods started to get back on track and within 2/3 months I'm steady. And without the iron which I'm glad I didn't take because I was lead to believe I should never take it or it would reverse all the work the treatment was doing.
Hi
I was diagnosed with Et JAk2 positive 2 years ago. My platelet levels have always been high 1400 at the highest but was told by my haem not at risk always been very well. Nearly 60 now with numb feet and a heart scare that turned out to be unfounded was put on hydro with a platelet level of 1400 3 months ago. At the moment it has gone down to 600 taking 2 tablets Mon to Fri 1 at weekends hope this helps it does feel as if you are the only one in the world that has it. Keep up with this forum it is brill and does help.
Thank you for your reply. I have answered above on lynn reply
Hello I was put on Hydroxycarbamide when my platelet level reached 750. I am also Jak2 positive....although I am unclear about what that means. I just know that it is another factor to be considered in the treatment of the disease.
Hi, I have ET and am Jak 2 negative. I was told my platelet level would jump when I got to 60 and it did!! (How did it know??!!) I went on HU when the platelets got over 1000, been on it 18 months or so and they hover between 280 - 380 at the moment. I take 2 mon - fri,and 3 sat and sun. I am also on a daily aspirin.
XX
Hi when I was diagnosed in 1996 my platelets were 2000 and I felt really terrible. They slowly came down to around 300 and I felt much better.
I now take 12 X500mg HU now called hydroxy carbamide. I believe it works by suppressing the production of platelets in the bone marrow.
I am puzzled by the suggestion you should go on extra iron as this will encourage more production of red cells and may lift the Heamacrit packed cell volume above 45 and that makes venesections necessary.
I am also Jak negative.
There are some good web sites say Leukemia Research with good explanations of our condition .
all the best
Town Crier
ET since 1986 normally well under control. on HU
You've been given great advice ,
And finding this Forum has helped me understand my condition ,
I'm sure it will help you understand much more about yours two ,
Maz & Marilyn have been a great help to me over the last year ,
They are always there to help up & explain what we don't understand x
I have ET jak2 Possitive Dignosed after a TIA platelet count of 850 16 months ago , (Now 440)
Was given HU & Clopadogrel & Simvastatin , I'm 52yrs old , get check ups every 8 to 10 wks, bloods, weight ,
It was a massive shock to me & my family
But thanks to my wonderful Haematologest & team I'm well cared for
All I can stress is stay fit , eat healthy lots of fruit & veg , & Water plenty walks , & Rest when needed ,no need to hit the gym I tried it, my bones can't take it ,
Hope this is of some help,
Take Care Pam Newcastle upon Tyne x
Thank you to all who have replied.
My endocrinologist wanted me to take iron as the levothyroxine I had been on for over 28years had stopped working properly. This was due to low iron saturation levels. Therefore the need for iron was essential for me to feel well again on my thyroid med.
From what I can read here my platelets weren't excessive. And up until my thyroid med wasn't working my platelets were stable at just over 400 for many years. So I feel that unstable thyroid has now increased platelets as it is known to cause sticky blood but once under control the blood settles back down
Aspirin was all I had daily.
Is clopideral better than aspirin?????
Hi
Going on HU is based on a number of factors, not just high platelets. 500 is not much above normal though, however i believe age is a factor to and if your 60+ even if your platelets arent really high HU would be considered.
Are your other blood cell counts within the normal range? Sometimes it takes a little while for counts to stablise which might be why you have a diagnosis of 'generic' MPN than specific ET/PV etc.
My sister is 49 and has ET and her platelets are normally around 900, she only takes clopidogril.
I dont know if one is better than the other, i think its more a case that its individual and one works best for some and one works best for the other.
If you do go on Iron make sure your haemotoligist is aware so they can monitor your HCT and HGB levels carefully to ensure there is no rapid increase in them.
Paul
Hi Paul
As far as I know they are ok. Although my ESR and WBC have been raised since 2007 But that was put down to inflammation as I have arthritis in fingers and osteoarthritis in my knees.
My Gp thinks the Haematologist has jumped the gun as he said usually his patients have been put on hydroxycarbamide until 1000 or even higher.
Thanks for responding
Hi yes the aspirin was giving me really bad stomach ache, the clopidogrel is ok for me to take without having the pain.
Thanks for your reply. Appreciate it very much.
I just wonder if instead of hydroxycarbamide being given to me, if they should've tried clopidergral
I take both, I was a bit uncertain when they started me on the hydroxycarbimide, and panicked to be honest because that meant my levels were not controlled, but taking it certainly makes daily life easier, and if I miss a dose I know about it. So for me it's the only way forward. Since I've been on it I have bloods every 2 months now.
It helps to talk to others who go through the same and support each other 
Hi.
So are you on clopidergral and hydroxycarbamide?
I have added problem of my thyroid.
I've never experienced symptoms of the blood condition. Didn't know I had it!!!
It's my thyroid.....being hypo. That's giving me the problem.
I don't even know if the blood problem even has any symptoms.
I'd been on baby aspirin sine 2007 and just monitored regularly.
Hi there
I am a generally fit and healthy 38 year old and after a routine blood test to find the cause of tummy pains, they found my platelets were 600+ so I was referred to a heamotologist. I am Jak2 positive. After a year on a low dose aspirin, my platelets crept up to 1600 so I am now on 1g hydroxycarbamide a day, which has brought my platelets down to 360. To me taking hydroxycarbamide when you are only on levels of 500 seems excessive.
I have no adverse effects to the drug fortunately, although I do feel tired a lot. Not sure if this is due to ET, the drug or just my busy lifestyle. I, like you, still don't truly understand this condition or why I have developed it but MPN Voice is a great source of advice and support.
I would also say try not to stress yourself too much about it. Apart from remembering to take my medication every day, it has had no effect on my life at all. Keep in regular contact with your heamotologist and ask questions. And, look after yourself by eating well and keeping fit. That is the best medicine
Mel x
Thank you Mel.
I have been very stable on just baby aspirin with platelets just above 400,
Things seemed to have gone higher to just over 500 when my thyroid blood levels went out of whack. Became very hypo. Endocrinologist said take iron which I did for two months and just as thyroid was beginning to show improvement Haematologist told me I had to stop.
Having MPD has never given me any symptoms BUT my thyroid problem is making me very stressed, anxious and very unwell right now.
Endo has been trying to get my levels right for over a year and now it's gone off track again.
Thank you for you reply
Rose x
Hi I live in Canada - I am 70 years old and I have ET, my platelet counts are around 865, so far I am on low dose aspirin, but I am being told that because of my age they would like me to be put on HU. Platelets are not only high but I understand can fall into the cagtegory of putting you at risk of either bleeding or clotting. I had a bone marrow biopsy recently so will know more then about where I am at when I get the results of that. Your blood results should tell you your platelet level. There are information sheets on reading your blood test results, on this group of disorders, and videos re the disorder. I also knew absolutely nothing when first diagnosed. I was fortunate that through this group the administrator was extremely kind and sent me two brochures which gave me helpful information. Also I found a group here in Canada which told me about some online resources to look at- videos from a mayo clinic conference and sheets on how to understand results - what the abbreviations mean. I am going to babysit - but when I get back I will list some of the links to resources I got given. I am 6 hours behind you-so you will find the message up on Wed Morning here. Jean from Canada. ---With good wishes.
MPN means our bone marrows, which produce red and white cells and platelets for our blood, go into over drive and produce too many which gives us thick blood = a risk of clots etc.
I didn't have ultra high platelets but quite high whites (risk of clots etc) and needed fairly frequent phlebotomy to keep my HCT (blood thickness) down (risk of clots etc) - apparently the later means u produce small stick platelets = risk of clots etc. So went onto hydroxy.
However I think u r right to be concerned about the iron - for reasons I won't bore u with I got told by my GP to take iron ; YOUR BONE MARROW WILL JUST GRAB IRON AND MAKE MORE RED BLOOD CELLS - which means u need more phlebotomy and/or more hydroxy, also will potentially speed up any scaring in your bone marrow. So my feeling would be taking iron is a potential problem and u need your 2 consultants to talk to each other !!!! jane
Thank you jane.
I have a problem here with the consultants. The Haematologist asked that my endocrinologist get in touch with him "to explain the science behind needing to get my saturation levels higher "
Endocrinologist then told me "if Haematologist writes to me then I'll explain it to him" so basically I stuck in the middle.
Thank you very much
So here are some videos:
The first one is: "Answering common patient questions on MPN's"- Drs Mesa and Camoriano (its on you-tube so you cd just type the title into a search and search wd find it - here is the exact address its abt 8 mins long
youtube.com/watch?v=3zcPlzL...
Once you start looking at this video on the side bar on yr screen you will see other videos listed that might be helpful to look at on similar topic,
Dr John Camoriano also has a really good video where he talks abt the importance of keeping yourself well/nutrition and exercise - called " Living Well with Blood Disorders" just search on the title and his name. Its 45 min long and it takes him a while to get going -he tells some jokes - but he makes some good points.
Sandra Walter Steinberg has a video called "Being Your Own Best Advocate" on being proactive as a patient again just search on the title.
The Mayo Clinic MPN/Patient/doctor conference has videos uploaded (it was held in Arizona) -videos are on line at mpdinfo.org and click on 2015 conference.
There's also videos on patient power with MPN medical specialists at
It was suggested to me that I should learn as much as I could because a knowledgeable patient gets the best care.
It is a complex subject so I have a file folder and I look up topics on line, make notes, and do a little reading each day.
I began with two brochures one one Hydroxycarbamide and one on Essential Thrombocythaemia both sent to me by MPN Voice at Dept of Haematology, Guys and St Thomas' Hospital, London. They were a great help and I am very, very appreciative of their help and of this forum. (I received nothing from the haematologist I went to- I didn't even know how to spell what he was telling me I had)
There are Journals too with articles -British Journal of Haematology for example and I have one article from that titled "Essential Thrombocythaemia" by Dr Claire Harrison that I found useful they take a bit of wading through, but they have good info in them.
Lots of articles are online by good sources if you search on what the Dr is saying you have -what your diagnosis is you will see articles - just try for the more recent ones.
Unfortunately, the sheet I have on terms re blood count is not on line. But if you type in Complete Blood Count terms you should get some good listings of terms.
All good wishes.
Hope this helps a little. Jean from Canada.
Hi- somehow the message would not retain the you tube address - it deleted it - so type the title of the talk in and put you tube video in after title and it should load. Some days you can't win with computers!
Did anyone's platelets continue to rise when they first started taking Hydroxycarbamide?
How did you feel when first diagnosed with ET?
How do you communicate your condition?
First Hematologist visit
Borderline high platelets
