Hello Jayne123

Welcome to the forum.  I occasionally get spots of blood when I blow my nose, but I suspect that I have blown it a bit harder than normal and a capillary has burst its banks slightly!   If they are not concerned, trust your doctors.  If you get a lot of regular actual nosebleeds, tell them in the same way as you would normally have done before you were diagnosed.

Stay safe and well

Maureen

Dear Jayne 123 / CMD 53

I have writing this message on the ET forum in the hope that this website will send CMD53 the link to all the messages about ET.  CMD wrote a message on the General Site and could not find a way of accessing this site.  I hope it works for her.

Maureen

Hi Maureen

Thank you for the response. I did worry a bit about the blood as it only started happening when i started the chemo. I have just been told that I do not have to have hospital appointments now unless there is a problem with my platelets. The consultant said it is the only chemo drug that the GP can issue. That will save me having to travel to Gloucester for appointments.

Regards

Jayne

I have platelet count of 850 , am 58, and am still on asprin, though my consultant wanted me on hydrauxeria since my levels were about 500ish. I worry that maybe i should take it, though feel well, run, go to the gym, in fact am generally active re sports. I know eventually i will need to medicate my condition and hope i am not making a mistake 

So Mikey, your platelet levels are rising and perhaps you should reconsider your decision.  Your consultant would not recommend, if they thought you did not need it - it costs money! 

My platelets are about 300, because I started taking hydroxyurea when my count was in the 800s and have taken it continuously for the last 20 odd years - I am now 82. 

I have not had a heart attack, a stroke or a blood vessel clot and have lived a normal life with family, doing keep fit, gardening and holidaying abroad. 

I do trust the doctors - they have my wellbeing at heart.  Regards Maureen V

Can i ask on here if people had any symptoms at all. 

I have fatigue, low grade fevers, increase in migraine frequency over the last 2 years, rashes,itching. I am waiting to see rhunatology as well but also over the last 3-6 months my platelets have been rising granted not as high as some people here. So july they were 491, september ish 448 and this week 452, but also they have been higher end of normal or high for the last 2 years also. My dad i believe have polycythemia vera when he was my age. Could ET be a possibility? My nhs doctors dnt seen concerned about raised platelets as 'its normal for me' should i ask to be referred to haematology privately ? I just have so many questions at the moment. I also have 'reactive lymphnodes' in my neck. Any advice would be great :) 

Hello Sammy

My original symptoms were a pain where my removed appendix had been which, after a GP blood test, took me to the Haematology unit of the hospital.  I don't remember feeling any of the other things you mentioned, but I was busy at the time, so probably just worked through them and put them down to getting older, as I was in my 60s.  They did a bone marrow biopsy (local anaesthetic which did help) and diagnosed ET.  I went straight onto drugs and have been ever since, although I did have a hiccup with the drugs and had to change them, but that is another story.  If you have the money, it may well put your mind at rest to get a second opinion.  I actually think I was lucky, because my consultant was the senior in the hospital and was particularly interested in bone marrow problems and I suppose it does depend on where you live (although it should not, of course).  Finally, trust your intuition and get things checked.  Much better to find that nothing was really wrong and could be easily managed.  Let us know how you get on.  Maureen.

Thank you so much for the response. 

I think i just worry as i was investigated for lymphoma last year and now things seem to be progressing and just feeling worse and worse. From what ive seen on the internet i think ET would be odd in a nearly 30 year old ? Im 30 next month. Although equally i have raised inflmmatory markers for which im seeing rhumatology for so maybe they will have answers as could just be reactive/secondary thrombcytosis due to autoimmune problem, its all so confusing. When i was last seen by heamatology they didnt see the need in doing a bone marrow biospy as my bloods were more normal than abnormal. Gah ill think about going private when i next have some days off work. I think i would just like to know if i could be high risk in regard to covid as i work on a positive ward as a nurse

Hi everyone I haven't posted for a while kept meaning to 

I haven't seen my consultant since January appointments keep getting cancelled because of coronavirus 

not sure what to do but hopefully this coronavirus will come under control with vaccines 

reading posts keeps me uplifted 

Happy and peaceful Christmas and new year to all

Michael 

Hi Sammy

It is 8 weeks since you last posted.  How are you doing - getting ready for a minimised Christmas, I suspect.  I hope you have some answers to your concerns and hopefully get a vaccine really soon.  My good wishes for a happy and healthy 2021.  Maureen x