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MPN Voice
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So much for BUPA medical

I read with much interest the posts, peoples symptoms, platelet counts, side effects etc

What I am really annoyed about is the fact that I have been diagnosed with ET at 63, from a routine blood test in February. Sept I was put on hydroxycarbamide. I had no symptoms, I am fit and well, exercise regularly, eat well, ski, play tennis,gym etc etc. I had a BUPA privatemedical 14 years ago when I was 50, and the other day I looked at the paperwork. I had high platelet count of 498 14 years ago, this was not mentioned to me, it was apparently passed to my GP who again never mentioned a thing. So I really wonder how many years my platelet count has been at 900!!!!

I really do not know what to think, 're this ET and hydroxy, I also take aspirin, but am very very confused with it all. I now feel worse than I ever did, fatigued, look drained, itchy skin. As anyone else just jacked the whole hydroxy thing in?

Anybody else in the same situation.?

I just hope the researchers find something to kill this JAK2 gene.

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Dear Mardihel !!

You are not the only one !! Sometimes I have to shake my head about docs and their attitudes and ways ;) !!!!!!

I had high platelets for at least 10 years -- real high (up and down). I was told when I was letting blood. Luckily I could keep an eye on the situation. When I told my doc that there was something terribly wrong--he said I was hysterical !!! (my platelets were then around 800-900).

Then an old midwife whom I'd been working with told me a trick to start my menstruations and in that way regulate my platelets. It worked well, but it was a terribly messy business and I was always tired !!

Ok-- in the end it occured to the doc that there had to be something wrong and then he accused me of ignorance :D -lol

Good Morning--Yarrowleaf

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Oh no, that's shocking, unbelievable at times, I really don't know what to think Good luck

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I was diagnosed in August aged 31. I asked how long I had had a high platelets count for. They said at least 7 years, that’s as far as my records go. In that time I have had a baby and my platelets have been as high as 650 yet they still missed it. I doubt this condition is as rare as they say - high platelets counts often go unnoticed.

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Since I have had online access to my medical records I realised that I had had high platelets for eight years before my diagnosis having had regular blood tests each year for a thyroid condition . Upsetting to say the least . Sadly GP’s are exactly that - general practitioners . When even haematologists aren’t always up to speed with MPNs it is unsurprising that so many of us have been overlooked . I have tried to be proactive by getting MPN Voice info into local surgeries & the local hospital .

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Yes that's a good idea, I have even thought of trying another haemotologist to see what someone else has to say. I now go to a nurse for my check ups, I suppose too much to ask to see the co sultan haemotologist more than twice, but as soon as platelets get to a reasonable number, will decide when to take hydroxy myself ha ha

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Courage is everything 😂😂😂

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I had exactly the same experience of routine annual blood tests showing a steadily increasing platelet count for years without my GP noticing, or anyone passing on the info to me.

Rachel

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Similar story. My blood has been monitored every three months for the last five years following breast cancer. After one round about a year ago, I noticed my platelets were high -- over 600. Called my oncologist and he then did tests etc to confirm ET/CLAr -- but the counts had been high for a couple of tests prior and he missed it. On hydra and aspirin and counts are fine now, although I often feel awful. For me, at 66, the risk of stroke is too much of a concern to stop the meds, although there have been many days.... FWIW, I'd recommend seeing a specialist if you can. Let us know what you finally decide.

Kim

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Thanks Kim, yes I will, I am going to have a good word with them on 11th Dec when j go again for bloods and MORE hydroxy, I also thought about mentioning volunteering for clinical trials,🤔gosh hope a cure gets found. Judy

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Me too!

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Being the cynical chap I am, I wonder if money is at the root of it. The cost to the NHS should we have a stroke, must outweigh the cost of Hydrea, which must be cheap to produce as it's urine based, (lots of that around!). The wretched stuff is fatigue inducing, brought me out in spots with itching. The question is, are you going to play Russian roulette and go against medical advice which we have all been brainwashed to accept! Doctor knows best. Michael

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That's a good point, Michael. I know Hydrea works because my counts are down, but the stuff is, as you say, wretched. Hard to think outside the box about alternatives because the medication makes it hard to think. Oy!

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You are so right, the last time I was at the hosp I asked the consultant if the hydroxy was expensive, she said they are as cheap as chips! So you so right, a lot more expensive having a stroke for the bus.

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My platelets were about 989 when I was diagnosed. They must have been high for some years, but we're never picked up even though I had been complaining of feeling unwell and extremely worn out. Apparently a lot of doctors are not familiar with MPNs - it was only when I moved house to a different county that a doctor picked up my high platelets and sent me to hospital straight away where tests revealed ET and PCV. I hate to think what would have happened if I hadn't moved. I suffered really badly with skin irritation, but once my platelets were sufficiently reduced it was ok. Don't give up on the meds as they will get your platelets down. Take care and hope all goes well for you.

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