Platelet count rises and falls

[Chrissyb61]

Hi,

I'm new to all this i am a 57 yr old woman, who has been diagnosed as having thrombocytosis.

I am being monitored by the oncology unit in my local hospital.

My platelets are rising and falling almost monthly 650 then 589 , 550, 480, 444, then yesterday back up to 520.

I am horrendously fatigued (I can sleep all day). My skin bleeds easily and my blood is very thin, every little cut or graze gets infected. One of my toe nails fell off last week. My hair has thinned and i have pins and needles in my hands. My face is puffy I've gained weight generally and my blood feels like its boiling . Last week i found a lump on my thyroud (with a large surface area) and i have referred to an ENT consultant next week.

The ultra sound scans on my spleen, kidneys and liver are all normal & i don't have the JAK 2 mutation.

I'm at s loss as to where to go and what to do. My erratic platelet count and the fact they I generally feel unwell is worrying me .

Does anyone have and suggestions they could offer me please. Id greatly appreciate any help.

[Osteomyelio]

Did they check to see if you have a virus like EpsteinBarr?

[Chrissyb61 in reply to Osteomyelio]

No they didn't. Thank you for suggesting this

[Hidden]

Hi Chrissy,

Platelets always fluctuate by 10% which yours are. There range is not far out normal range. Not sure why you are feeling so terrible. My platelets are around the 700 mark and I have no side effects at all. I have ET, with CALR mutation. If you have a high platelets counts your blood will be classed as thick not thin unless you are on an anticoagulant like aspirin., which I am on. Maybe something else going on not MPN? That your GP needs to investigate. Good luck.

Lyn

[Chrissyb61 in reply to Hidden]

Thank you Lyn

[Dazakella2010 in reply to Hidden]

Everyone’s body is different... platlet levels effects everyone differently.... I have ET jack2 + was diagnosed in April this year... my platlet levels range from 415 - 613 and I have been on hydrox for around 3 months now.... I have had a headache since February this year, since going on hydrox my headache has really eased. I still have days of fatigue but this is to be expected.

I had a bone marrow biopsy yesterday as

They think that maybe I have progressed to PV.... just got to await the results now on 18th November.

When I was diagnosed I felt terrible... just really not well but couldn’t tell you how...

I was told By my local hospital that my levels were not high enough to worry about and sent me away with a booklet! He told me that there was nothing to worry about... he needed up calling me back 3 weeks early to tell me my diagnoses and that I was JAK2 +....

I’m now under guys and they are absolutely amazing.... they are so caring and generally interested and caring.

I hope you get sorted soon. Take care x

[socrates_8]

Hey Chrissy...

You might still have an MPN, and w/ High Platelets it could well be ET...

There are a few different Types of 'Driver Mutations'... (Driver mutations might largely be responsible for causing most MPN abnormalities)

Seeing as how you have tested negative to JAK2+ perhaps you should suggest to your medical team that you be tested for both MPL & CALR (?)

If you were negative to both of those too, then there is another possibility of being 'Triple Negative'. Only by being tested for them specifically will you be able to either Rule those other 'Driver Mutations' in or out...

Are you taking aspirin at present?

There is also another condition known as Von Willebrands Syndrome (VWS), which is usually when the blood lacks a coagulating protein... There are Three (3) Types in chronological intensity. I have Type1 myself, and apparently, I should never have been taking aspirin... But I am glad that I did because it really helped to solve a few problems early on in my diagnosis etc...

Best wishes Chrissy... & do let us know how you get on etc...

Steve

(Sydney)

[Hidden]

Please get your Vitamin B12, folate, vit D, ferritin, and TSH checked out. I have ET and had lots of similar symptoms to you in the beginning. As well as high platelets >1300, my B12 was on the low ( but normal side so all the doctors ignored it) . After taking B12 supplement, within 6 weeks 95 % of my symptoms vanished. I have no treatment for my platelets. Doing very well. Off to play tennis for 2 hours now.

Good luck.

[Wyebird]

There are other mutations. I have Calr ET. What do they plan next? Maybe a second opinion if no diagnosis but if you do that I recommend you go to another hospital trust. The reason being in my area new patients are discussed in area meetings in order to ensure the best treatment.

A new authority will mean a completely new set of minds.

Good luck

[hunter5582]

You will need to find out what the lump on your thyroid is to get any answers. Thrombocytosis can be a secondary symptom from a variety of other conditions. You may not have Essential thrombocytosis. Other things need to be ruled out first. Your thrombocytosis is very low grade and your range of cycling sounds pretty normal. The other symptoms you describe could be related to a MPN - but could also be related to a thyroid issue.

Hope you get answers soon. Meanwhile, hang in there. Keep checking in here as well as we will all be there to offer whatever support we can.

[Chrissyb61 in reply to hunter5582]

Thank you for taking the time to write to me, i will advise when they have aspirated the lump & i have further information. Thank you again

[Johnsb]

Praying for you !! This must be frustrating. I have PV and can tell you pur bodies aer not designed to maintain anyone set level of anything, they move around as needed. My Hemoglobin count can move 10% over a weekend, up or down. I am anemic as a result of meds etc. and some days I am wiped out. At least I have a diagnosis which does make it easier.

John

[MaggieSylvie]

Hi Chrissyb61, I have just read your post, now two months old. At 75, I had my three-month appointment with the haematologist on Thursday and all my blood counts were better - the haemoglobin was up and the platelets were down (560) I don't have a record of what my counts were before but they have been up and down, with this last lot being the best. My haematologist said that up or down doesn't make much difference. "They are in the same ballpark". I have thrombocytosis as well but also an MDS. I just take aspirin and have always bruised easily. I don't seem to bleed more as a result of the aspirin. My organs are all normal, and the condition is down to a mutated gene but I can't find out which one, only that it is not JAK2. You may have something else that is making you so exhausted - I hope that you can have your thyroid sorted out as that could be the reason for you feeling as bad as you do. Good luck. It's a pity we can't be treated more holistically.

[Chrissyb61 in reply to MaggieSylvie]

Hi Maggie,

Thank you for your reply. My thyroid turned out to be okay no problem. My platelets are regularly around the 500 mark for a few months now I haven’t had much bruising. I’m just carrying on as normal , hoping nothing else crops up.