newly diagnosed, frightened. My GP missed my high platelets

[lynnieb]

Hi everyone. I'm a 45 year old woman , and During a routine blood test, my endocrinologist discovered my platelets were high at 1200. I was referred to a haemotologist, but saw my gp in the meantime. She discovered that three years ago my platelets were 800 but they never told me. Three years on, they are rising rapidly, (1300 when I saw my haemotologist 2 week later).

I HAD a test that took 8 weeks, and she told me I have ET. She also organised a BMB for next week (6 October 2015). She said there may be scarring? I'm feeling a bit overwhelmed, and to be honest, angry that my gp did nothing.

I'm so glad to have found this site, especially that people suffer hot flushes that have plagued me for years. I'm feeling quite confused though with everything.

[fannetastic]

Hi Lynnieb,

I too was diagnosed after a routine blood test in 2013 after passing out a lot. When the blood test came back he said he would refer me to a haematologist as my bloods had been " funny" since 2007. Was diagnosed with MPN JAK2 pos. A BMB was arranged and I was scared witless. You will feel scared I know. When I was first diagnosed I felt scared, very alone and somehow " different" and detached from everyone. I was very frustrated also with my GP and I also believe that I had the uninvited illness for many years before as I had the dreaded itching as far back as 2001. This site and the people on here are a wonderful source of information and support, so anytime you feel like a rant or have a question, we have been there, done it, got the t-shirt. Write a list of questions you want to ask your haematologist as it can all be a bit overwhelming. Its your body your life, so don't be afraid to ask. Yes, your life will change but my advice is take each day as it comes, you cant change it. Eat healthy and stay as fit as you can, don't lie down to this, although sometimes you will want to. Kick it in the teeth and most of all stay positive.

Anne

[lynnieb in reply to fannetastic]

Thanks for that. I really appreciate it

Lynn

[Mazcd Partner MPNVoice]

Hello Lynnieb, we can all understand how you are feeling, but as you will see, this is a very supportive forum, the people on here are fantastic. If you would like me to send you any of our information booklets please email me [e-mail], and if you feel that having a buddy to talk to would help then I can also send you the information and a request form. We are here to help and support you so just ask any questions that you have, we will do our best to answer them for you. Best wishes, Maz

[Paul42]

Hi

I can understand your frustration. You should have at least been retested to see if they remained high.

A lot of people with PV and ET have some scarring in the bone marrow, that doesnt mean your on the way to having MF.

A BMB is not always done now as often the condition can be diagnosed without it. They arent too bad so dont worry about it if you do have one.

Not easy to say but try not to get too annoyed with the GP, ive been there myself, the main thing is they have found it now.

Paul

[lynnieb in reply to Paul42]

Thanks Paul. I am going on Tuesday for a BMB so it is very reasssuring that it isn't too bad. My haemotologist dd say at first I probably wouldn't need one, but I think cos it had risen again in the space of a few weeks, plus I have neurofibromatosis ( tumours on the nervous system) she needed to see where things are.

[MarkD6701]

With regards to questions, I always have a nice little list draw up when I go to see the haematologist.

[jane13]

i feel angry too as i was in a similar situation: my GP made my condition worse by prescribing the wrong thing through ignorance. however, like u i was eventually correctly diagnosed and have now been stable on hydroxy for several years. I have moderate scaring, which I'd rather not have, but it seems to make little difference to treatment and my quality of life.

I think there is more awareness of our condition out there amongst doctors and it's important that this improves further - which I hope is one of the things this forum aims to do....wonder if we should pool some stories and send them round to the Royal College of GPs etc????

good luck!

Jane

[Linda1950]

Hi I seem to have gone through a similar experience to you. I had a high platelet count picked up 7 years ago and was monitored for 2 years was told it had come down and that they could stop the monitoring. Over, at least, the last 3 years I've been feeling unwell with all sorts of symptoms which I now know are related to my condition. I too felt angry that my GP hadn't related these to a possible risen platelet count, you would think it would flag up on your notes. I was diagnosed with ET and Jak 2 3 weeks ago and went on aspirin and hydroxycarbamide so straight away. It is all very confusing, hard to take in and frightening but this forum has been great for me over the last few weeks. 1in 100,000 suffer from this condition so it's hardly surprising that GPs misdiagnose and one way to look at it is, as the consultant put it, I've avoided meds and having a stroke, blood clot etc for the last few years so don't be angry it's not good for you. We have to keep calm, meditate, my friend sent me a great utube video for cancer meditation, I fell asleep, exercise, eat well and most importantly drink at least 2 litres of water a day. I don't find that easy but try leaving it to reach room temperature and put lemon in it or a small amount of squash. I'm going to find out ways of improving my immune system if I can and I've also booked on the November 14th London seminar to listen to experts talk and meet other patients. I feel we have to do what we can to help ourselves as well as the treatment from the experts. Good luck with it all.

[lynnieb]

All your comments have helped me greatly. I'll know more after my BMB on Tuesday, but its very reassuring to know that there is this forum where we can swap experiences. Thanks to you one and all!

[garden41BULBS]

I also am recently diagnosed.       

My legs seem to feel tired..

[Garden987]

Hi lynniebe. Your story is similar to mine.

[Garden987]

Hi lynniebe. Y our story is similar to mine. I had been feeling dreadfully unwell for 5 years after a chest infection and constant visits to my GP came to nothing. Eventually she asked me if I wanted a magic pill! I said no, I want you to find out what' s wrong. She reluctantly organised a blood test where it was discovered that my platelet level was 1400 and in fact were 1200 in 2012,. I am now 77. My haematologist did a BMB and diagnosed ET. I take 500mg Saturday and Sunday and 1000 weekdays. I felt very unwell for about 18months but then things settled down although I was also taking Clopidagrel as a blood thinner. I now take aspirin and feel much better. My platelets are now 480 so that's encouraging. I too was very scared especially with no support. Keep persevering and I'm sure things will work out for you,. My very best wishes.