ET any help would be great,

Hi

I don't have a confirmation of ET I am just on here searching for answers. For over a year I have had vertigo, other dizziness and fainting plus fatigue at an extreme level (ie I can sleep most of the day). Following the initial symptoms a few months later I had a dvt  (I was in hospital for eight days and had three procedures now I am on 4 types of medication recently folic acid was added.

I have just had a blood test which showed platelet count of 510 (post folic acid this went to 440 plus my haemoglobin levels are on just below the normal range on the low side -plus i have daily headaches caused by low level exercise - ie walking up one set of stairs gives me chest pains then within five mins headaches which last the rest of the day.

No-one has ever told me why the dvt occurred - it is only recently I saw the platelet levels after my GP wouldn't discuss my results for three weeks so I picked a copy up - whilst these are not super high - I am on a lot of medication to thin my blood and provide iron.

In addition to the above my legs now itch I thought initially it was the washing powder but I couldn't wear clothes for a few days on my legs and it keeps recurring - I believe my body did itch in the initial stages it is just now more frequent so I am noticing it.

To anyone that has ET - if you have had a clot do they automatically test for ET in the hospital?  My next steps are I am asking for a referral to a haematologist through my insurance. I know these symptoms may seem minor but I don't want another clot and I have no answers why this all happened.

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. 

    I don’t have ET but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I understand the challenges of this journey well.

    It took over a 9 months with my GP and a further year with my consultant for me to get a clear diagnosis even although my consultant was 99% sure as to the type of NHL I had.

    If you can get a referral to see a Haematologist do it as these are the blood specialists and they will be able to rule out or in any of the many blood cancers or blood conditions (not cancers) that are out there.

    Always around to chat at any time.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike 

    My insurance have covered me for the haemotologist so I will follow up on this asap but I have bypassed my GP in this process. I feel like a fraud as I know compared to some people my levels are low but I am highly medicated and the dvt was a full leg dvt and the medical profession don’t seem to care why it happened or it could happen again - when I reflect back I was having peripheral neuropathy for a year before hand I just thought it was a new Symptom of my autoimmune disease.

    I just find it odd that six weeks ago my platelets were high I’ve been prescribed folic acid with a further blood test three weeks later and now it’s a further three weeks before a GP will discuss the results of either test - its fundamentally wrong that something is prescribed to someone with a generic letter sent in the post.

    sorry for being a grump I’m finding the medical profession painful at present though. When I was younger I had scoliosis corrected and the school nurse spotted it (that school no longer has a nurse) in todays world I probably wouldn’t even know.

    hayley 

  • Hi again Hayley, never ever apologise for feeling grumpy- when it comes to your health you want answers so good that you are bypassing your GO and getting a Heamatology appointment.

    Lets look for you to get answers soon.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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