Wow there's a group for Essential Thrombocythaemia!!

So after living with ET for the past 10years and never doing any research into what it was or how many other people are affected by it, I thought it was time to finally have a look!

Just to give you some insight into my background I’m a 23year old female living in the UK and was diagnosed with ET at 13years old! From what I’ve been told by previous doctors I am one of the youngest people to have been diagnosed with ET.

Over the years I have been on most of the medication available to ET sufferers from Hydroxeurea (tablet form) to Anegralide (tablet form) and finally peg interferon (injection) without realising I have suffered most of the side effects of the treatments but have never voiced them to a doctor because somewhat unwittingly having had the disorder for so long and from such a young age I never realised that the symptoms I had where down to me having ET and taking medication for it.

Symptoms range from – hair loss, burning sensation in hands and arms, fatigue and general tiredness (all the time), shortness of breath, pins and needles, needing the toilet all the time and finally severe anxiety!

Today is the first day that I have realised that all these symptoms which I just consider to be ‘normal’ are actually down to me taking medication for ET. Even so I want to stress that I feel that even with these symptoms I have lived a completely normal lifestyle and most of the time even forget I have ET.

It's taken me 10years to realise that there are support groups out there for people like myself and hopefully now I can get some of the questions answered that have been preying on my mind all these years. And in return I hope that I can help and support people like me that have had to deal with ET from a young age.

12 Replies

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  • Hi Jennie, I am so glad you have finally found a support forum, and think you have a really good positive outlook having to have dealt with so much from such an early age, I was amazed when I had such supportive and informative comments from my post yesterday( having recently found the group) I'm sure you will find some much needed answers now along the way too. \you mentioned anxiety, glad you touched on that subject, its something always in my background since DX, I wonder if lots of us have it? I have found ways to keep it in check, but can't manage to get rid of it completely. Good luck on your journey Jennie

  • Hi Thanks for getting in touch, My anxiety has got worse in the last 2 years I don't know if it's been down to increasing my medication or maybe it's just because now I'm older I am more aware of things around me and have responsibilities such as a mortgage etc... to worry about. I don't know about you but my anxiety results in me getting so anxious about seemingly nothing other than just life in general that I cry quite a lot completely un- announced. Does anyone else's anxiety result in these symptoms?

  • Hi Jennie,

    Id love to her how you've been with your ET, i am a 32 year old mother of a 5yr old little girl that was diagnosed with ET in April of this year (we are still in total shock at how rare this is in kids!)

    We're you put on medication straight away when you were diagnosed? My daughter isnt on any at the moment but when the time comes i think her haem is talking about Anegralide.

    Where are you based? I love to hear from young people as i think my daughter is probably one of the youngest at the moment.

    feel free to privately mail me if you like . jenx

  • Hi thanks for getting in touch. I think my best advice to you would be to not treat your daughter any differently, my parents never treated me any differently and I have lived a perfectly normal life I don't do anything any different to if I hadn't of had ET. I work 50 hours a week and have a very active social life in the evenings after work and at weekends I spend most of my time either shopping, horse riding, rock climbing, skiing and going out drinking socially usually on friday nights. I do get tired but always put it down to how busy I am all the time.

    When I was first diagnosed I was rushed to the children's cancer ward and immediately put on hydroxeurea and for the first week I was on it was violently sick every time I took it. I don't know if this was more down to stress and anxiety of me being 13 and thinking I was going to lose all my hair like the other patients on the ward. But after a week the sickness subsided and ever since then on every different medication I take I get flu like symptoms and an achy feeling but I just take paracetamol and its gone in a couple of hours. I always take my medication at night so I think I must sleep through most of the symptoms.

    I'd be more than happy to talk to you or anyone else in more detail if you want to find out a bit more. I'm planning on attending the talk in Cardiff in Oct to hopefully meet some other people with ET.

  • Hi Jenni, Glad you've joined us :-)

  • Hi Jenni, Can i ask, did you see an MPD specialist about your ET

  • To be honest with you I have absolutely no idea what my first doctor was or even his name. When I was 16 I was transferred to an adult heamotolgy outpatients ward and my doctor is a called Dr Guy Lucas, I don't know whether he is a MPD specialist I never thought to ask the question before. That might sound a bit naive but I've always just gone along with what the doctors said a lot of the time dr Lucas isn't around and I just end up seeing a stand in DR who never knows what to do with me, I normally end up advising them to either increase my meds or keep them the same depending on my platelet count.

  • Hi I was diagnosed with ET at age 35 (in 2004) - platelet count was 2000. Since then been taking Hydroxeurea x 5 daily. This was 6 in the early stages but 5 seems to give some stability. Its very interesting to read that some people suffer from anxiety as this is the case with me and now visiting psychotherapist and taking anti-depressants for 3 years. I have found my anxiety is getting worse but never ever thought it could possibly have something to do with the medication. I have since moved back to Holland where I was originally from and will need to have another bone puncture soon as my puncture results when I was diagnosed in 2004 were unsatisfactory. I only found this out recently as my new haematologist needed the results. I was seeing a great Haemotologist in Carlisle who is now semi-retired. I am going to find a MPD specialist in Utrecht hospital. Thank you for sharing your stories its good to know there is a support forum for all of us.

  • Hi Jennie, really pleased to see that you have found the group but sad to hear that you are having symptoms of anxiety. The only advice I can think to add, is to see if you can find an MPD clinic somewhere. I live in London and therefore have been lucky enough to get to Guys Hospital. However, I know others on here have MPD clinics they go to around the country. You can always ask for a referral to a specialist clinic to run alongside your haematology clinic.

    If so I recommend Guys in London.

    Also, I am wondering what your platelet counts were when you were 13, they must have been pretty high, very frightening for you. Not wanting to sound too psycho babbly but maybe you are just beginning to process all of that now you are an adult?? Just a hypothesis that may be part of your anxiety issues.

    I have ET, btw, but only need aspirin, which helps me enormously. Good luck and take care.

  • Hi Jennie

    just seen your post and wondered if you had spoken to your haematologist about the side effects of interferon - I am taking that for et, after hydroxy was no longer effective and it has been really good at controlling my counts so that my platelets are now around the 400 mark. However earlier this year I suffered from lots of side effects, bordering on depression and under active thyroid - hair loss/fatique/dis-interest in my family/ I could hardly think straight and each day was a major challenge. Fortunately I realised that the meds had been affecting me and discussed reducing the dose to see what happened and I felt quite a lot better after 2-3 weeks AND my counts stayed stable/low - have since reduced meds again and have a consult next week to review. I feel so much better, clear headed, not anxious or tired so if you haven't looked at this with the haematologist do broach it - I have another friend who had to be taken off interferon due to depression.

    If your haem is not willing to discuss this it may be worth asking for a referral to an MPD specialist unit as you are young and you do want a quality life as well as good control of the blood counts and unfortunately some consultants forget this.

    Take care I'd recommend that you try to become an expert and your own project manager of the condition as it's quite rare and research and trials are moving head of the general haematologists knowledge.

    Also as you are quite young. later in life ( I'm now in my 5os) for routine things like surgery/dental extractions etc the medical experts often aren't geared up to handle you in the right way with regards to adjusting medications so again you need to join up the dots for them

    Take care and keep positive and let me know how you get on

  • Hi I have ET was diagnosed about 2and and a half years ago I'm jak2 positive I'm not sure what this means my heam put me on hydroxycarbimide and 75 aspirin straight away I take 2 one day and 1 the next and so on my platlets are under control with that but I would like to know about the jak 2 thing cheers and stay well everyone xx

  • Hi Jennie I am in many groups for MPN and I have ET I like you have had it for ever I think its 18 years now I was diagnosed in my 40's I actually think I had it so much earlier just took a random blood test and they found out even though I had no symptoms I have just stated talking on forums But I think it can be too overwhelming some times I think I want to go back to my old ways knowing what I know but just living life... I have been very lucky too like you and just lived normal true I have all those tired symptoms and the aches but strill very lucky not to have experienced anything else Cheers for now Denise

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