MPN Voice

Criteria for diagnosing ET!

Hello, sarahjane here. I have just had my 2nd heamotoligist appointment, and feeling frustrated and uninformed! My platelet level is 591 right now. Last time I saw heamotoligist, he said it could be ET, but a bone marrow biopsy would confirm that. The lady I saw yesterday said it's too soon for a BMB as my platelets are not high enough yet! She did advise aspirin, but wanted to see me again in July to see if platelet level jumps up. I'm triple negative for all gene tests and have had no thrombosis in the past. She said the BMB can be uncomfortable and advised against it. I asked if she thought it could be ET, and she said it could well be! I feel like I'm going mad not knowing anything for sure. Please help!

47 Replies
oldestnewest

I wish you well I have a mutated gene Calr. Apparently there are other mutated genes and could well be plenty yet to be discovered. Is your consultant an MPN specialist? If not maybe seeking one for a consultation could be the answer. If you live in the UK then I’m are Maz of MPN voice.Org.Uk could help you.

2 likes
Reply

Hello, I know how frustrating it is to wait for a concrete diagnosis as it feels like everything is on hold until the next appointment. And if that doesn’t deliver conclusive results then you have to wait again.

I am triple negative ET and my platelet levels are not much higher than yours. I did have a BMB and it was not a pleasant experience, so if there is an option of waiting to see if your levels drop down without having the BMB then it might make sense, even though the waiting is irritating.

Ultimately, the treatment might just be aspirin anyway (it is all I was recommended to take with platelet levels similar to yours) so perhaps that’s some comfort (although I think if you are 60 or over they may suggest further treatment).

All the best

Tom

2 likes
Reply

Hi, My diagnosis followed a lumbar puncture, which that wonderful stroke unit doctor arranged. The doctor who did it was fantastic and without a word of a lie, I felt nothing. It took 2 weeks for the result to come back but from what I can make out from this site, it is far more 'pallatable' than the BMB. Wrong word perhaps but it fits, sort of.

1 like
Reply

Does that mean your stoke doctor suspected a problem? I had a stroke when I was 50 not ET related.

Reply

ONE stroke doctor and the pharmacist, who were determined that the numerous TIAs were not TIAs and based on a GP (not my usual) who,when I went complaining (again) about severe pain under my left ribs, sent me for blood tests and noticed the raised platelet levels. In my wisdom, I took myself of the clopidogrel and proceeded to have another 'do' and took myself to A&E. Something I don't generally do because the outcome is generally the same. Doctor on the ward said he wasn't convinced they were TIAs and that my raised BP, which I've had for years and don't take medication for (due to intolerance) was probably normal for me. He arranged every test under the sun, which I elected to do as an outpatient. That was January and by the time I'd got through them all and got the haema. appointment it was mid March. End of March I was diagnosed. I have had the symptoms for years but until then, no-one had gone out of the way to consider me more than a statistic!

Reply

Gosh thankyou my diagnosis was so simple compared to yours and other sufferers. Does that mean you’d never showed elevated platelets?

Reply

I don't really know. It had never been commented on. I suspect it was just a case of the gp not noticing because when I saw my usual one a couple of weeks later, he said 'Well done Laura (other doctor) for noticing that'. Good eh? I'm just thankful that it's now acknowledged because I've had so many years of them trying to put me on BP tablets and Statins and I just do not cope with them. In fact, in most cases my BP went up. I have generally been treated as 'difficult' rather than having a system which doesn't tolerate those drugs. One reason I stopped telling anyone about the supposed TIAs.

Reply

Oh bless you. I queried the rise in my platelets And was told it could be an infection. I was to be tested a few weeks later. Meanwhile I had to go back to doctor due to mega sore throat. I thought that was why I was tired. The retest reading didn’t alter much. They said all was ok. I think they put platelet rise down to recovering from sore throat. Six months later a trip to a and e for exhaustion like symptoms revealed platelets still 550 plus. That’s when a and e consultant said go back to Doctors and get retested.

That set ball rolling, once I saw haematologist it was plain sailing.

Reply

You see, that's where I go wrong. I have had so many incidents and not visited a&e. I don't think it would have been any different if I had however. Previous time I did (March 2017) doctor put the needle in my arm and removed 4 vials of body fluids with no resemblance to blood because he'd missed the vein. Never had any blood taken, just the needle removed later, on the ward and told it wasn't in properly and useless and sent home 2 days later having had a CT scan and assessed as having had a migraine! I don't get those but looking back, I was clearly suffering the symptoms of ET and had been for a number of years. Possibly since 1993. Definitely since 2012.

Reply

Oh my goodness despite having this awful illness I do hope you are now enjoying better quality of life than before diagnosis.

Reply

To be honest, I was bored with keep having those episodes and no-one taking me seriously but think I may have preferred not to have this. Something more to be anxious about. This site is helping me a lot and I'll get there in the end however. I'm being so well behaved now re water and sunscreen, which I always used anyway!

Reply

Yes I understand but now the meds prevent those episodes. I’m in bed now. I have to do this because I’m going to a party soon. Oophs time to get ready x

1 like
Reply

Enjoy the party!

1 like
Reply

Enjoy yourself. I will do my very best not to let this thing spoil my enjoyment of life. All the best!

2 likes
Reply

Wait till July and reevaluate. You will need the bone marrow biopsy if the blood work isn't showing anything. Even if it was showing something, they like to have a baseline BMB for comparison down the road.

1 like
Reply

Unless you have any other health problems and / or you are over sixty I can see why no one might get overly excited about a platelet count of 591. (Mine got to about 800 before my GP put her foot down and insisted I saw a haem!) It would be perfectly standard practice to put you just on aspirin and monitor. I didn’t go on to drug treatment until my platelets got to 1700 (although by then the diagnosis had changed to PV and i’d been having venesections.) And the ‘age sixty’ marker is not a definite line. Moreover, if you have no symptoms, or they are not troubling you, then just enjoy that

The BMB is a useful diagnostic tool. Don’t worry about it at all. It’s not something I would actively choose as a leisure activity(!) but although uncomfortable it is perfectly manageable.

I hope you can get some answers to set your mind at rest. But it may be, that as frustrating as it is, there are no definitive answers to be had right now.

3 likes
Reply

Could you tell me what is so magic about 60, please? I am 66 but 'only on paper' and my lifestyle is sickeningly healthy, until now, when this drug is making me feel so bad that I am thinking twice about doing my minimum 1 hour speed-walk in a morning. My diet was brilliant, apart from my occasional ice-cream splurge but now I'm in disarray. I don't eat meat apart from fish and probably have that only once a week but now I'm really floundering, SORRY. I just keep grabbing all the carbohydrates my body craves due to the fatigue.

Reply

I’m not sure it’s a ‘magic’ number but I guess someone has looked at the stats and decided that in the wealth of factors that determine outcomes it’s a useful one. But it is only one factor to be taken into consideration.

If you’re recently diagnosed then it can be a time of great turmoil. And especially if you have always regarded yourself as super healthy and / or the diagnosis comes out of the blue. That’s more or less what happened to me. And from feeling generally well I went to feeling awful -absolutely exhausted with countless other symptoms like tingling as well as not being able to sleep etc.

With hindsight i’ve come to recognise a few things. First, many of the things I experienced at diagnosis I now think were the consequence of the turmoil and anxiety of that time. And that, that pattern can repeat itself subsequently, for example when a diagnosis is changed or new treatment started. Second, not all symptoms are necessarily down to the MPN or the treatment. They may be hormonal, age related or due to some other cause. I only have to look at my friends to realise that. Third, having a healthy lifestyle may improve our experience of daily living and possibly our long term outcomes but it won’t stop us being diagnosed with an MPN. I guess it reminds us we are not all powerful beings determining our own fate! And finally, I started on Hydroxy about six weeks ago. It’s made a huge impact on my platelet count (so far) and I’m just enormously relieved for that. As for symptoms. I think I’m less tired - but Spring is here, the days are brighter and I realise, as for everyone, a good nights sleep has a major impact. I’m less breathless but that depends on my iron levels and the very cold weather was challenging. The itching goes up and down. Last week was suddenly dreadful. But on reflection I don’t think I was drinking enough. So this week I’ve hardly noticed it. And so it goes on. I don’t really want to second guess tomorrow or the day after.

It takes time to come to terms with all of this. So be kind to yourself. Keep on with the healthy living. You’ll find a version that works for you. And age is just a number. 🙂

6 likes
Reply

Hi Ebot, just to say I really enjoyed your reply. It was honest thoughtful and elequently put. Thank you

3 likes
Reply

Thank you. I appreciate your comment.

Reply

Thank you for your very wise words. I find it difficult to believe that it's only 6 weeks since you started your 'experience'. I'm thinking you have a consultant who talks to you, unlike mine who just asked me what I knew and told me to take the drug. I have the water down to a fine art and often drink more than the suggested amount. I call 2 pints of water 'breakfast' at present and get at least another pint in before midday. Re hormones....what are they? I had a virtual party when they finally departed.

1 like
Reply

Hi

I’m afraid I’ve been dealing with this MPN milarky for nearly six years. But yes, the Hydroxy element is pretty new. And yes, I think the fact that my haem team are very much into ‘having a conversation’ about everything and especially about treatment options is enormously helpful. I’m sure others will agree that your experience with, and confidence in, your clinical team, impacts hugely on how you feel about your disease, symptoms and management - whatever that disease is.

As for hormones, I never like to second guess who is feeling what and when! But whether they are in greater or shorter supply they do seem to make their presence felt. 😁.

Hope you too are enjoying some blue skies and sunshine today.

Reply

I intend to remedy the lack of social skills on my next visit. I wasn't even introduced to the person who followed us in and sat behind me....rude! Thank fully, my specialist nurse is lovely but so busy and powerless by all accounts. I'll get there. thank yo uagain.

Reply

Thank you for your kind and comforting words. All I really want at this stage is for my heamotoligist to tell me if I have ET or not! Right now, I simply have raised platelets. I feel in limbo. So frustrated. X

3 likes
Reply

XxxxX

Reply

I was diagnosed with ET about 25 years ago when the only way of diagnosis was using the results of a BMB. If I remember rightly my plc had been consistently high for over 2 years but not massively high. The BMB was excruciating painful and it confirmed ET where upon nothing changed and life went on without any treatment (for years). Later I found out I am Jak2 negative and don’t gave the calr gene (does this make me triple negative?). Years later I started aisprin and then years after that Hu. I think what I am saying is that you could wait for a BMB as long as they are checking your blood. Good luck!

2 likes
Reply

Please could you tell me how long you have been on the drug now?

1 like
Reply

Hu? About 11 years I think.... no side effects... my only preference is the colour of the capsule ... I like the pink and blue ones best! 😀 why do you ask?

1 like
Reply

I have just looked and realised you are new to this....sorry if I sounded flippant.... I was terrified when it all started! X

1 like
Reply

Also..... I wouldn’t worry about et turning into leukaemia ... the chance is tiny tiny....tiny.... you might get very sick though if your plts are allowed to run around multiplying and some not working properly... and the chance of that is bigger!

1 like
Reply

Maybe when your plt count is down you might feel better?

1 like
Reply

Thank you. Much appreciated. I see from this site that I am not unique in my reaction to being put on this drug. Your comments have helped a lot.

I asked the period of time you had been on it because my theory re not doing so until after 60 is that it's based on your life being closer to the end anyway and therefore, if it turns nasty i.e. leukaemia, it will not be shortened as much as if you're put on it earlier. I know. Rather a negative approach but I'm just voicing all my fears at the moment.

All your comments have helped alter my mind set and for that I really thank you.

Reply

Had they thought my life was nearly over I might have questioned that.... I was 42ish when they put me on it.... they didn’t want me to have a stroke.... and neither did I. Plenty of life left in me... plts behaving!

Voicing your fears is good... and hopefully you will end up with less to be scared of. 😀

Reply

Thank you. Me too. ATB

1 like
Reply

Hi sarajane,I live in MK do you? I have ET and I am 58. The magic 60 is daft really but I suppose they have to have guide lines. There is more risk of heart attacks and strokes after the age of 60. However it is a guide and not a rule as I have been taking hydroxy for over a year now because of the symptoms I was displaying. 🤗 Carole

1 like
Reply

Thank you for helping to make me feel more 'human' about this. ATB

Reply

Bridie123

Reply

Hi, sarahjane here. Thank you for your kind reply. I was 53 in march, my platelets started rising in 2011, now they are 591. But no treatment yet and no diagnosis of ET! But I know it must be. I'm triple negative in all gene testing. I know a BMB is meant to be very painful, but to be honest, I just want to know what I have. I feel like a ticking time bomb! Can I ask what tour platelet count was when your treatment started? X

Reply

Hi there, not sure if your asking me a question or not so apologies first if it's not me your asking. My platelets were still only nine hundred and something when I started and the bmb is nothing to be frightened of. When they put in the local anaesthetic and ask can you can you feel it just say yes a little and they will put a bit more in. I have tough bones and the doctor had to go in twice and it took ages but it was bearable ☺ Carole

Reply

Thank you for that! I feel so much better for hearing that its a bearable procedure! I will bear in mind about asking for more local anesthetic! I'm a bit of a coward when dealing with pain!!! Hope you are well and enjoying this lovely summer weat her. Long may it last!

Reply

Hi,

I had BMB week ago. Iam 41 jack2 + diagnosed with ET couple months ago.

I was very scared about my BMB.

I think it’s more stressful than painful to be honest.

I am glad it’s over but like everyone said before the pain is bearable.

Deep breaths and control breathing did help me.

My husband was holding my hand, one nurse was stroking my arm the other was reassuring me everything was fine. Also the doc was very good. So if you will have BMB don’t be scared as they will look after you.

Good luck

Reply

The BMB is both diagnostic but also provides a baseline for subsequent changes such as developing myelofibrosis.

Reply

Hi Sarahjane.

The reason for your mixed message over the BMB could be nothing more than the way in which individual Consultants treat the condition. However I am not medically trained and my overall knowledge is limited to my own experience.

I had a BMB when I was first referred to a Consultant, following a high platelet count, during a routine blood test by a GP about 14 years ago. I was aged 47 and my platelet count at the time was under 600. The BMB was not a pleasant experience and I was told it was for diagnostic purposes. Following the BMB I was told that I had ET and was JAK2 negative.

My treatment was aspirin and did not change until last September following my 60th birthday when I changed hospitals and Consultants for logistical reasons. My platelet count by this time had gradually risen to over 825 but I had not had any other health issues.

I was informed by my new Consultant that I was in fact JAK2 positive and therefore higher risk, but I believe that the main reason for the change of treatment was based on clinical guidelines and the additional risk of medical complications as we get older. I am now on Hydroxy.

For me the most important factor is having a Consultant who treats you as an individual, explains clearly why they are recommending the treatment and listens and takes into account your concerns. I am very lucky on this count.

All the best with your treatment going forwards.

Ian

Reply

Hi, this is sarahjane. Thank you so much for responding. I was so frustrated after my appointment with yet another different heamotoligist who I had never met before! I was expecting to be told I needed a BMB, and while I know this is not a nice experience, I just want to know if I have ET or not. I think it's fairly obvious that I do, but nobody is telling me anything! I feel like I'm at risk of a thrombosis in the meantime. My husbands ex wife suffered a devastating stroke at the age of 31, and he is worried that I am at risk of something similar now. They are being so vague when I do get to see someone, I come out confused and unclear about anything! Sorry to go on, I really hope everything is good with you. Best wishes, sarahjane.

Reply

Hi Sarahjane, I had the BMB 6 wks ago and felt no pain whatsoever during the procedure. I did take a unisom (25mg of benadryl) 20-30 minutes before the procedure and was quite comfortable throughout. I assume the comfort level may be related to how you feel about any medical/surgical procedure (pain tolerance) but again I felt no pain.

My platelets run between about 450-550. The BMB said that the findings were consistent with ET but needed correlation with other blood and lab results. I am Jak2+.

If you want to know more then have the BMB, it may help put your mind at ease. None of us want to have a MPN but like my GP said - it is what it is.

Best of luck to you as you start your journey, don't let it define you.

Reply

Lucky you.... maybe they have changed the bmb procedure in the last 30 years.... when I had mine in the 90s it was like being kicked by a horse!

Reply

Sorry to hear of your bad experience. I think the technique and instruments as well as the experience of the BMB'er have probably improved since then. Hope you never have to have another.

Reply

You may also like...