Hi, has anyone had bleeding in the eye? I don't mean "bloody tears" but under the surface of the white of the eye. I woke up this mornong with a large red mark on the eye. Went to docs & he said " it's just the blood vessels under the surface that have burst" - I KNEW THIS ALREADY. What he didn't seem to get was my worry about my ITP.
Has the same happened to anyone on here???
Hi - yes, I've had a couple of instances of this - a large red dot on the white of my left eye. I don't remember any trauma to my eye either time so I just thought of it as being a petechiae but on my eye ... it did clear in a few days. I think my count was in single figures at the time.
Hi. I have had both a retinal bleed and a bleed into the white of my eye. Neither of them lasted long and neither of them caused any lasting damage. Both caused considerable amounts of worrry. NickyD
Thanks NickyD.
I have major bruising problems - so much so I'm very happy we havn't had a summer & I can keep wearing trousers & long sleeved tops. I can usually hide the bruising but I can't weat sunglasses in the rain. I know i'm being light-hearted about ITP but I don't let it worry me, I was just worried about my eyes - thanks again x
Although my count goes up and down quite erratically I am lucky that I dont get major bruising. I do get petechiae and small bruises. What treatment do you get when you have the bruising and what is your count when the bruising appears? Which hospital do you attend and how often?
In the 6yrs since diagnosis, my count hasn't been above 40. The only treatment I have had in immunoglobulin (?) transfusions prior to a tooth extraction (2yrs ago). I only have annual reviews with the haemotologist at Lancaster Royal Infirmary & if i'm worried about my bruising I go to my GP for a blood test.
Compared to some on here I, a) have no medical interferrance or b) my haemotologist is rubbish - the jury are out on which one.
The blood count does not give you the full picture. I was referred to Dr Provan at Barts Hospital in London and I went to see him last week. He said you have bleeding when your count drops suddenly. If your count stays level (within certain perameters) then you do not get bleeding. He gives IVig (immunoglobulin) when the patient is bleeding. Go on the ITP website and find out which hosptial is local to you that is a centre of excellence for ITP. There was a list of them in the platelet magazine recently. Ask for a referral - I did - and got one to Barts.
Hi
I have had this happen three times, twice before I was diagnosed and once after when count was approx 15.
Hope you get a count done and yes I also wish GPs were more understanding of ITP and the problems associated with it.
Lynnek if you want to get a referral to one of the ITP Centres of Excellence/specialists you can do so to get a second opinion. The full list is at ....ukitpregistry.com/itpforum/... and I would say that it is absolutely worth seeing one of the ITP specialists listed . Hope this helps.
How do I get a referral??? My GP thinks the haemotologist will do what's needed and in turn the haemotologist thinks annual reviews are enough!
I've never had any of the drugs offered to me that so many people on here have had, I've never even heard of them (my lowest count was 12 & the highest 40 in 6yrs) so I don't know what I should be doing.
I look on here and ask myself "what are they on about"? I bruise & bleed - I cope. I have never been told how it can be helped and I suppose I don't ask in case I offend my haemotologist or GP.
So i'm asking my 'friends' on here - how do I get a referral xx
Hi Lynnek, your history absolutely mirrors mine, (my lowest count 0 and highest 50 but hovers round 35 now) and have only had immunoglobulin for a tooth extraction 2 yrs ago. I was diagnosed about about 8 yrs ago. I was being seen yearly by my haemotologist and have now gone down to annual 'telephone consultation'. You don't necessarily have to have medication - people react differently. I get the odd nose/gums bleed, a few spots and bruises now and again. My GPs view is that if it is under control there's no point in giving out unnecessary medication.
Until now apart from obvious lifestyle changes eg to avoid knocks ITP has not affected me too much but this year I had a TIA and obviously cannot be given asperin to prevent another. Take care, Heather
Hello Lynnek, to get a referral to the nearest ITP specialist you just need to get your GP or current hospital doctor/haematologist to refer you. Obviously it is sensible to be a bit diplomatic when asking your existing haematologist to refer you to an ITP specialist but as an NHS patient you are absolutely within your rights to get a referral. The list of specialists is on the following link.... ukitpregistry.com/itpforum/...
hope this helps and best wishes to you. Please let us know how you get on.
Thank you - will give it a go x
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