I just wanted to share with everyone and the world πππππππ
Had a hospital appointment yesterday at my local hospital, haematology again lol
Anyway I got some answers to my low platelets I have an auto immune condition called itp which is immune thrombocytopenia I am sure some of you have heard of it π
I also got my bloods back today from yesterday and my bloods are the best, the best and I say it again THE BEST they have ever been I am sooooooo God damn happy π πππ
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jojokarak
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Bootandall, your low platelets are probably a common side effect of having cirrhosis and portal hypertension - your spleen is gobbling up your platelets. In JoJo's case she's post transplant so cirrhosis is no longer and issue.
Thanks for both of your replies. I have had low platelets and splenomegaly since 1974, when I had chemo, that's why I was given the transfusion that gave me the HepC. I was just wondering if maybe it was pre-existing and how would they tell. I may ask at my next appointment, I have some old records to compare. But may be best to leave well enough alone! π
Been monitoring me consistently every 2 months for the last 3 years and my platelets even though low are stable, they done a number of other tests to rule out the nasties and they requested old blood results from another hospital I was under and she compared them... Only way of confirming is bone marrow biopsy but she said it was painful and pretty unnecessary In my case π
Treatment for it is steroids and lots of them lol but I trying to get off them so I said it doesn't bother me on a daily basis so I would rather not and she happy with that I know if I cut myself it's straight to casualty x
jojokarak- great you had good results. Odd that same day your haematologist diagnosed your ITP, so did mine! He said no treatment necessary unless it falls below 30 when immunosuppressant would be prescribed, but you probably have that anyway don't you? My platelet score was 78 at lowest and 130 at highest and glides up and down like this. At the moment I'm not bruising much. Sometimes I have spells of bruising. Is yours like that? Variable? Although it is called idiopathic ( unknown cause) it is associated with autoimmunity, and I have PBC which is an autoimmune condition. Well, the more gets chucked at us, the tougher we get! x
Jojo, wonderful news, it's fantastic to have a good set of results. I imagine it's been so long for you, you must have forgotten what it's like!!
Regarding ITP, when I was working as a midwife we'd often find people with low platelets diagnosed with ITP, then it was referred to as idiopathic (of unknown cause) thrombocytopenia? Don't know if now they have realised that it has an immunity element, thus changing the name?? Anyway, that's not relevant if you aren't planning on treating it (just interesting to me) . In those days those with ITP weren't treated, it was just a matter of regular checking of clotting factors etc. I'm glad you were supported in your decision to not take more steroids, they are probably reassured by the fact you're sensible and know what you're doing.
Keeping things crossed this positive trend continues.
Wass71- I have low platelets, described yesterday as "ITP, probably autoimmune" which was the best possible reason because I do have a couple of managed autoimmune conditions! Interesting that you knew this as a midwife - I had pre-eclampsia as "an aged primip" 38 years ago, and always wondered if the autoimmune process was underway or triggered then. Do you have any knowledge of a connection?
Hi, tbh, I don't know. I myself have PBC and I'm sure that was triggered by gallstone pancreatitis which occurred weeks after pregnancy. Pregnancy can cause gallstone problems due to hormonal effects on bile. As they aren't sure what causes PBC, I think they assume the genetic 'switch' is turned on by infection/environmental factors/physiological stresses etc.
I do know that those with auto immune illness often have more than one. So this might be why you were predisposed to ITP.
I did read some articles where studies were done to see if pre eclampsia had an auto immune element, but I don't think there was a desisive answer. Current thinking is to do with the formation of the placenta in early pregnancy, and restricted blood supply due to size of vessels.
I hope you are well now
Sorry I can't be of more help, but I'm not currently a practicing midwife, so I'm a bit out of date, medical thinking and understanding advances very quickly, so it's easy to get out of the loop.
Wass71 - Thank you for your reply. I read a few articles that didn't result in anything decisive, and there was ongoing study in Oz, including a registry of pre-eclampsia, but I was overtaken by fatigue, SS, PBC, ITP, so that's enough for now, without me looking greedily around for any more. How are you at the moment?
Wass71 - thank you - very good point about Post Hijacking. We've exchanged replies on PBCF about preparing for tx. I only had experience of colon resection/hospital stay. I'll look-see if you posted here and join thread!
Since I was a teenager my mum and dad have always told me if I cut myself I needed to go A&E so I knew something wasn't right, consultant asked me yesterday had no one ever investigated why but no one ever did but because it never caused any problems it's never bothered me π
And I not sure about change of name as I have never heard of it before yesterday x
I looked it up, and yes they have changed the name, which means they have discovered it is an immune condition. After many many years of not knowing the cause that must have been quite a revelation. I'm glad after all this time you have more answers
jojokarak - how did they know? Did you have a bleeding episode? (I'm not being funny). R what you say reminds me that I almost died giving birth from a sudden, huge blood loss. My baby was 9.5 lbs, tricky to deliver, and the obstetrician later said he reached the point of having to decide which of us to save! Luckily, both of us... Odd how things forgotten come back to mind, like joining the dots!
Not sure as I said above mum and dad told me as soon as I was going out alone/with friends but I started off in hospital when I was born I was in for a few months because I had a swollen brain through a traumatic birth so my guess is they found out then π but because I had problems with ibs and then when I started walking my knees would dislocate the blood was put on the back burner.... But in all honesty it's nothing to worry about really it doesn't effect me in any way apart from when I need a procedure doing just to go in day before for platelets π
Yea !! Delighted π
π₯³π₯³π₯³π₯³ππππππππI'm so happy for you JoJo ,,, such excellent news on your bloods!
Great News Jojo, I'm so so happy for you πππ. I will check up on ITP, never heard of it before. I have very low platelets like you, 28 last time, and if I cut myself, I bleed like a pig π₯π₯π₯, not to mention my weekly nosebleeds. Did they offer anything to improve the platelet levels?
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