Thrombosytosis high platelets count for 18 years

Hi my name is Vicky I am 38 years old.

I have found out that I have had a high platelet count since 2004 ranging from 470 to 599 my GP referred me in August this year to a haematologist who has tested me for CALR, JAK2 gene mutations which were negative then I had BCR-ABL which was negative and now I have visited the Macmillan Unit for blood tests not sure what these are for now but have a telephone consultation on 28 June
regarding these and then he said next it will be Bone Marrow biopsy. I have always been a sickly person getting more infections than most people and getting run down. I am fatigued a lot and feel tired constantly. Has anyone else on here had anything similar it’s a long time to have something and I’m sure if it was serious it wouldn’t have been going on this long.

Thank you

2 Likes

Hi @Vickys01 welcome to our forum and although we can not tell you what might be a diagnosis for you, that would have to be a medical person. However what I do pick up on is your anxiety.
I think it is so natural, there must be thoughts and feelings whizzing around for you.
I think the not knowing and waiting is horrible.
You say that you have a telephone appointment on 28 June so that will give you an opportunity to write down all your fears, questions, practicalities etc. so you cover everything you want to at that appointment.
From what you say you have had certain symptoms all your life, but it sounds as if you are having comprehensive tests now.
Do you have support from family and friends?
Perhaps the main thing is that you look after yourself.

1 Like

Hi thank you for replying.

Yes 100% its the anxiety of not knowing

Hopefully I will get some answers at my appt on 28th and will update.

Thank you

Vicky

1 Like

Hi @Vickys01 Erica has given you great advice. It’s very understandable to get anxious about things like, especially when it involves lots of tests and isn’t conclusive. You’re in good company on this forum, we’re all used to the waiting game and lots of tests along with the accompanying worry. I hope it doesn’t turn out badly for you and you get some relief from your worry. Remember we’re always around to listen if you need it.

1 Like

Hi @Vickys01,
A huge welcome to the forum and thank you so much for sharing this. It sounds like you have been on a rollercoaster of emotions. I do hope you are coping okay?
We do know that individual platelet levels can be naturally raised for many reasons and often further investigations allow for reassurance and a process of elimination so it is good to hear that your team are looking into this further and you may have answers will better explain why you have been feeling so run down.
Do you have a date yet for your bone marrow biopsy?
Please do know that should you wish to talk anything through in the meantime or indeed at any stage, we here on the support service are always here for you- Blood cancer information and support by phone and email | Blood Cancer UK

Take Care, Lauran

2 Likes

Thank you for your kind message @Franko

1 Like

@LauranBloodCancerUK Thank you Laura for your kind message. I don’t have a date for this but should know more after my appointment on 28th with the haematologist.

Hopefully everything with be ok and I will just need blood thinners to manage.

Thanks again

3 Likes

I wouldn’t be so sure of that!I had a long run of fairly minor problems before an undetected indolent cancer blew up and I had to have my finger amputated.I developed what looked like ezecma in around 2005 and was duly diagnosed as such by a GP and to be honest at the time I was more relieved it wasn’t scabies which I thought it might be!But it got worse and worse making a terrible mess of my hands and feet and finally in about 2018 I was sent to the dermatology department at the hospital where they decided because the 30 substance patch test produced no reaction it was psoriasis and not ezecma.However four terrible tumours appeared on my hands and I had to have my finger amputated and radiation on the thumb plus two palm tumours the surgically cut out… very unpleasant and it hurt a lot as the hand doesn’t have much thickness to absorb the anesthesic.It turned out I had a rare Non Hodgkin’s Lymphoma called Mycosis Fungoides at stage 2b(the beginning of the advanced malignancy and no longer indolent)all that time but to be honest I don’t think that they could have done much before and as it was skin damage similar creams like topical steroids and emollients as you’d use for psoriasis and eczema will relieve the symptoms.They say that they can only treat the external manifestation of the Mycosis Fungoides now and not the internal generator of the corrupted cells except by a stem cell transplant but that carries about a 25 percent chance of rejection and death so not a tempting option!

@Kevan7 Hi Kevin thank you for sharing you have had an awful time I hope that as I am under the haematologist for bloods every 3 months they will catch anything before I develop anything as terrible as you have.

I hope you are doing ok now.

I have been looking into it and having thrombocytosis for a long period of time can increase more serious conditions.

Hopefully they can rule out any serious conditions and give me something to thin my blood.

Take care

Vicky

1 Like

Strangely they never detected my Lymphoma via bloods it by by a biopsy of a tumour.I’d have thought as leukemia, lymphoma and myeloma are blood cancers you’d pick them up in the blood but seemingly often not!