TIAs/Mini Strokes and High Platelets

[Tinkerbell13]

Hi...Has anyone with ET (or another MPN) experienced a TIA or stroke, which has been attributed to high platelets? Would be grateful for any input.

Tinkerbell13

[katiewalsh]

Hi Tinkerbell, after my ET was diagnosed, my doctor said he believed that my possible TIA a few years earlier probably was a TIA. I had blood clots filling both lungs which is what led to the diagnosis. That's the only help I can provide. Hope nothing bad happened to you. Good luck. Katie PS. Nice to see you on here.

[Tinkerbell13 in reply to katiewalsh]

Thanks for replying, Katiewalsh, your experience sounds far more dramatic than mine and trust you o.k. now. I had 3 minor strokes (told first was Lacuna, second two TIA's all within 3 weeks)....high platelets blamed so put on Anagrelide. But seems different views about what causes these TIAs amongst the medics. Best wishes, thank you, Tinkerbell13

[socrates_8]

Hey Tinkerbell...

I had a TIA late August 2015. Initially, and after much testing, I was originally mis-diagnosed and it was called a pinched nerve (by one GP).

However, May of the following year (2016), I was tested for a standard medical, and my FBC revealed a Platelet count of 1,700.

Therefore my previous TIA was attributed as the most likely cause. At that stage, I was diagnosed as having ET, which later became early Myelofibrosis after further confirmation of my Bone Marrow Biopsy (BMB) showed a level 2 grade of scarring to my bone marrow.

What was that you needed to learn about TIAs in particular?

What symptoms did you experience, and hopefully revert to your medical team?

Steve

(Sydney)

[beetle]

Yes, I had TIAs approximately 10 years after diagnosis. I was taking HU at the time and my platelet count was around 800 at the time. Brain scan revealed small lesions so they were called minor strokes. (TIAs apparently do not leave lesions). I have taken statins ever since and had no further problems. Best wishes Jan

[Tinkerbell13 in reply to beetle]

Very many thanks for your helpful reply, Jan, and particularly relevant what you say about TIAs not leaving lesions. Really hope you continue to do well. I am on Anagrelide, but taken off all aspirin, as fears of internal bleeding at one point. Thanks again. Most grateful for kind replies. Tinkerbell13

[JSKly]

Hello Tinkerbell, Yes, I had a TIA in February and although it wasn't confirmed definitely as a result of my platelets and I understand there is no definitive proof that high platelets do cause strokes, the Haems feel that high platelets are a contributing factor. I was part of a trial for Ruxolitinib and was told that my platelets had to come down (from 700s) to 400 or below or I would not be able to remain on the trial. I really liked Ruxolitinib but when the dose was put up to control the platelets my HGB was dramatically lowered so I asked to try interferon. In two weeks it lowers my platelets to 500s. I will be interested to see how the bloods are after a month on this drug.

My experience is that some specialists are more concerned about platelets than others and I guess when you have a TIA those that are especially concerned about them. get more worried.

C.

[Tinkerbell13 in reply to JSKly]

Hi JSKly...really kind of you to reply and at such length.

You are so right about different specialists and different views....having been treated at two hospitals, I certainly endorse what you say!! Now between stroke consultants and haematologists, who again operate totally separately.

Hope you do well on the interferon, though you obviously liked the Ruxolitinib.

Very helpful, all you wrote, thanks so much again.

Now wish you well! Tinkerbell13

[harleydavidson]

Hi Tinkerbell. Are you ok? Love Mel x

[Tinkerbell13 in reply to harleydavidson]

Thanks, Mel, yes o.k. now. Months ago, platelets rose sharply, had 3 TIA's....and still debates about whether they were caused by the ET. Interested to know if anyone out there had experienced anything similar. So kind of you to be concerned. Great Forum this, full of lovely people! Thank you again. Best wishes. Tinkerbell13

[harleydavidson in reply to Tinkerbell13]

I'm glad you are on the mend x

[tessa46]

Hi Tinkerbell

I had a minor (luckily) stroke in October 2015, then after about 6 months of investigations, when platelets were 600 - 700, haematologist at Stoke Mandeville hospital decided I had ET, confirmed with JAK2+ test. You are right that TIAs leave no lesion on the brain but strokes do. I was told that HU would reduce platelet count and thus protect against further strokes. I'm 69 and pretty fit, so far on clopidogrel and statins, have refused HU due to my terrible record with adverse reactions to drugs, but I have an appointment next week at the Churchill in Oxford, to see if they will offer Pegasys as my platelets are increasing. Not keen to take anything but there is some evidence of small numbers of remissions on Pegasys. I believe TIAs (although not to be ignored or underestimated) are not as serious as strokes, my Mum had them quite often for at least 20 years and she lived to 95 without developing dementia! But I do realise its quite frightening when it happens. I hope you do well on the Interferon, is it Pegasys? Good luck with your treatment.

[Tinkerbell13]

Hi Tessa, so interested to read about you and hope you will be offered your choice of Pegasys.

Empathise re Hu, as had awful reactions to that and Busulfan. But was offered - indication of no alternative! - to re-try Anagrelide, (plus Clopidogrel) which have been on since the TIAs. And now in past two weeks stablised platelets in 450s.

Interesting too about your mum, who sounds to have been a remarkable lady.

Thanks so much for replying and wish you very well. Tinkerbell13

[violeta19]

Hi Tinkerbell,in 1998 i had cancer then a few years later i had Temperal Arteritis then in 2013 i was unwell again it was similar to the Temperal Arteritis i had had years before so i was referred to same consultant back in the same hospital they said it was'nt that at all and sent me for a brain scan where they seen i had a most definite stroke as mini strokes do not leave any trace i was prescribed simvastatin and aspirin 1each to be taken daily of and on over the last 3yrs i never felt just right so last November after much pressure from my husband i went back to GP who informed me that my platelets were high and had been for at least 1yr and blood tests were done 5 in all the last was the end of January this year i got a phonecall from my GP mid February saying they were referring me to the hospital for further tests that is when i was told i have ET/JAK2 positive you will never convince me there is no connection with the stroke i had had..Violet.

[Tinkerbell13]

That is very interesting, your comment about a connection with ET and stroke....so kind of you to reply and really hope you can have the best support and keep well. Because I initially had such a severe headache, the GP thought I had temporal arteritis too.. When she mentioned it, I totally misunderstood and thought she was referring to arthritis! But because she insisted on an extra blood test, like with you, it was discovered my platelets were v high, and thus I was referred to the hospital, where I promptly, in A&E, had a stroke!

Although I would never want anyone else to go through any of this, it is reassuring to find others like you.

I do wish you all the very best and send you many thanks for responding. Tinkerbell13

[Phelpsy]

Hi Tinkerbell It's 4 years now since my diagnosis of ET after a Tia , it was all brought on with high platelets 900+

Loss of speech-strength & continually laughing for 30 mins then all came back to normal, very greatful for a Quick diagnosis from our local hospital

Was given HU & Clopadogrel & statins

Now platelets are 300 & fit and well x

How are you x

[Tinkerbell13]

Hi Phelpsy, so glad you are now fit and well. But most interested to read of your experience, so like mine, with the platelets in the 900's. Extraordinary re the laughing...mine was more paralysis of left side and slurring and loss of speech, which each time lasted up to 24 hours....all very strange. Given Anagrelide, as mentioned, also Clopidogrel and statins, like you....and at the moment platelets stabilised around 450. Thank you very much for replying. I do wish you well. Best regards. Tinkerbell13

[mickey64]

Hi Tinkerbell, we have talked a lot about meds and platelets and it is very scary. I see an expert in the USA who continues to say high platelets alone are not a cause of thrombosis. However my local disagrees however my local says my only risk factor is age (I'm getting closer to upper 60's) eventhough I'm Jak2+. It is scary as we are up in age and my platelets continue to stay around the 900's for about a year sometimes lowering to the 800's. The expert will not give AG (Anagrelide) told me if I wanted that I would have to find a different expert. But I did have AFIB awhile back so that could be the reason. I have heard some get pounding rapid heartbeat on that medicine. OK fast forward my local wants me to try HU very low dose (200/300) again and he is willing to go the pegasy route (I did not do too well on HU and the expert does not want me on HU). Some do wonderful on pegasy and other do horrible. I think it is just us, we are all different. I am very interesting to the cholesterol meds people are mentioning here and I heard an expert say everyone with an MPN should be taking a statin due to the inflammation MPN's cause, however my expert, my local and even my cardiologist will not to do it. I am curious to what was high in you, your LDL or HDL. My good is like 75 but my bad is 10 points over normal (109) and my overall is 194. So all the doctors say the good outweights the bad and supposedly I have a lot of good. Hmmmm not so sure about that one. Now the good news is there is a new interferon/pegasy that they thought would be out this year but seems not until 2018, but from the trials say and the experts in the USA say it has much less side effects. How are you doing on AG?. Best wishes, Mickey

[Tinkerbell13 in reply to mickey64]

Hi Mickey, great of you to answer and at such length...not sure how to answer re LDL and HDL, though - does 6.8 mean anything to you? number I was given for cholesterol. My platelets each time were 900, when strokes causes, but interesting, as now hearing from a different stroke consultant, that high platelets don't necessarily cause TIAs/strokes, perhaps....all rather confusing!

Still finding it difficult that medical opinion over here is still so divided over statins....I don't take them.

Tolerating the anagrelide at the moment and it keeps my platelets in the 400's but still having fortnightly tests and it does tend to vary, still.

I did badly on Hu and wouldn't go back on that again.

Really interested to know how you get on and please do keep in touch with us all. Hadn't heard about the new interferon/pegasys...which hopefully might help you? (Was told months ago would not be given interferon, for some reason...). Very best wishes, Mickey, Tinkerbell13

[HelenK]

Hi everyone, this is an interesting thread to read. I was diagnosed with ET in 2014, currently on Pegasys and platelets around 550. I've been feeling really well on the Peg compared to Hydroxy but on Sunday I passed out waiting for a bus into work. I remember losing my vision, reaching out to lean on the shelter and then nothing til people rousing me. When I came round I had no idea where I was, my main concern was that nobody phone my parents and worry them. I couldn't remember the name of my condition or the meds until about 15 minutes later. That was also when I remembered that my parents have been dead for 9 and 7 years respectively. This is the second episode of passing out in 4 months. How do I know if it was just a faint or a TIA? Can anybody advise please? Seeing my GP in the morning.

[mickey64]

Whow Helen that does not sound good, I'm not on Pegasy but I have heard other say they got dizzy and light headed but I do not think they passed out. Would be good to have blood work done. How much Pegasy are you injecting at the moment. Here in the USA they recommend starting low. The expert I see says people on and off meds, low or high platelets, can have TIA's/strokes etc. But I could not tell you what that was? Maybe your BP dropped very low? Let us know what your Dr says. Best wishes.

[Tinkerbell13]

Hi Helen, that must have been very scary for you and hope no more like that. With me, each time it was definitely loss of speech, and unable to move my left side....but definitely 'conscious' of what was happening, so think what happened to you was different. I do wish you well. Very best wishes, Tinkerbell13

[HelenK]

The GP has referred me to the local TIA clinic. Hopefully they will reassure me that it was just a faint.

[Tinkerbell13 in reply to HelenK]

From what you said, did sound a bit more like a faint, but sure they will be most helpful at the TIA clinic, usually a great bunch of people! Best regards, Tinkerbell13

[PhilReade]

Hi I experienced near blackouts last year in September which lead to a TIA I have Essential thrombocythemia I’m on lots of medication

I lost the vision in my left eye temporarily I’m now on Apixiban along with 1500 mg daily of hydroxycarbamide

It’s baffling as my platelets was around 450 at the time

But I’ve had DVTS in my right calf and two Haematoma while my platelets was 450 !! So the fact of the hydroxycarbamide forcing the platelets down doesn’t really convince me it stops symptoms

Love to hear people’s views on this take

[Mycancerconcern1]

Hi Tinkerbell 13. I have just been diagnosed with ET after having a mini stroke. The doctors have known i have had a high Platlet count since 2008 and i have never been informed of this until now in 2018. After having the mini stroke i was then diagnosed in the last 2 weeks with ET and now on Clopedogral & Hydroxycarbamide. I am far from happy at being told i have had a high platlet count for the last 10 years and only finding out after it has caused me to have a mini stroke & very possibly being diagnosed with ET. It makes me wounder why they did not do something about my high Platlet before now as it would of probably prevented me having a mini stroke and would probably have found out long before now that i have ET.

[Tinkerbell13 in reply to Mycancerconcern1]

Do agree with you that it has taken far too long to diagnose and especially if you have had high platelets for 10 years. So hope you are recovering well from the mini stroke and getting on all right with the Clopidogrel and Hydroxy, without any side effects. Have you now been referred to a haematologist?....hope so, as it makes a great deal of difference seeing someone regularly who understands ET. Having had mini strokes and stroke symptoms, each time, my platelets were about 900...or over.

Wishing you the very best, do let us know how you get on. Tinkerbell13

[Mycancerconcern1]

Thank you for the reply. I have been to the Stroke clinic today and i queried why i had not been sent earlier for tests prior to having a mini stroke and i was palmed off saying i need to ask my GP. They were in agreement the GP should of looked into this long before now so i will take it further. I have the usual side effects with the medication the same as i have had for years with blood pressure medication only 3 times worse now. Light Headed and drained all the time.

[Tinkerbell13 in reply to Mycancerconcern1]

Sorry about these side effects, think tend to have the same with the medication, so you have my sympathy. Hope you can have helpful talk with a good GP and also see a haematologist. Interested to know about your mini stroke, did symptoms last a while? Sending you my best wishes as always, Tinkerbell

[Mycancerconcern1]

Hi Tinkerbell13. When i had the mini stroke i thought i had a migraine. My right eye started to slowly black out just like a shutter closing on a camera until i was totally blind in the right eye. It lasted around 20 minutes and it started to open back up again slowly just like a camera shutter again. I thought nothing of it and put it down to migraine. It happened on a Friday and luckily i had an eye test on the Monday were i told them what had happened and they referred me straight to the eye hospital then the stroke clinic.

[Tinkerbell13]

Hi again, that sounds pretty dramatic, but so often we don't realise exactly what is going on. Thankful you didn't have to wait too long, before it was

diagnosed. Many thanks for telling us. As ever, wishing you well. Tinkerbell

[Blackpool1]

I had a stroke then surgery