As most of you know that have seen my posts. My spleen is a giant 24cm and my platelets are at about 18k. My doctors are still trying to figure out what is going on with it. Typically spleen sizes are considered enlarged in categories. Mild being a few cm increase moderate being up to 20cm and massive splenomegaly being held for any size above 20 cm in length or reaching the lilac Crest. Whilst splenomegaly in mild form is common in cirrhosis due to portalhypertension and moderate being a bit more rare, massive splenomegaly is not common and almost unheard of in cirrhosis. My hepotologist is at loss of words for it right now and my hemotologist was pretty keen on thinking it was a secondary issue like lymphoma or leukemia or myleoproliferative neoplasms as these are absolutely the most common causes of massive spleen in the western world. While I await sorting it out. I was really curious if anyone has this massive spleen issue as well. I know one of our members does but I know she is being checked by a hemotologist as well right now for it as she has had a transplant and yet still her spleen is massive. I should have asked this long ago but I'm finding that everytime I do a search on here for it I end up on the MPN voice forum. Which makes sense especially since I have nothing pointing to portal hypertension in the liver on my scans and I have no other sequale of portal hypertension as well. Initially my hepotologist though it might have been a " transient portal hypertension" due to the alcoholic hepatitis but since my fibroscans have continuously dropped and my bloods have all returned to normal my spleen actually has increased in size. It is now officially a cm bigger than it was when I was in the hospital back in March. Sorry for the novel guys and thank you to any that respond.
Spleen Size: As most of you know that... - British Liver Trust
Spleen Size
I guess bigger is not always better 😁. Sorry about the crass joke mate. No idea what's causing it but I sincerely hope you get some answers 😊
Oh you know me Klodian I love crass lol. If only liver disease caused enlargement of the penis lmao! Thanks for the reply brother
Hope you get it sorted. Re the sat comment you should try a large dose of Predisilone, for some odd reason it worked for me.........😂😂😂
Do you get IV platelets? Mine were 35 pt, now 153 post.
No they dont give them to me as for some reason when I get cut my clot time is normal. How big did your spleen get to again Snouite? I know you mentioned it to me before .
It was 18cm, glad your blood clotted. My bedroom looked like the St Valentine’s Day massacre.
Snoutie .Oh the old Al Capone bleed. Thank God you got to the hospital when you did. I have read that low platelets due to reduced production can cause that. A reduction in hemopoitein if I'm spelling that correctly due to the liver disease. My situation they sort of explained it as that I have the the normal amount of platelets but they aren't in my blood stream they are trapped in my spleen. So when I get cut they release from the spleen to do their job but end up back in the spleen after that? My INR and PTT time are all well within normal range. They did give me platelets transfusion in the hospital but it only got me up to 28 and they were back down to 9 in less than 12 hours.
Regular platelets put in, if I remember correctly it looked like custard and had to be sent by Bike from London, I am 33 miles south. Normally in the day unit when I was being drained.
Yea that's correct it's a yellow custard filling looking shite.
OK, here is the crazy bit. The bleeding was fairly mild to start, so I went to the GP and came home with a tube of cream. Carried on drinking but (obviously) the bleeding got worse. I skipped the GP and went straight to Gastro department at the hospital, did not pass Go. Stop drinking now, I did.
3 weeks before transplant I was told it was so large, can’t remover the exact size, that it would need to ge removed. When I wake after surgery I was told it hadn’t been removed as it had shrunk back to almost its correct size!
hi my 16yr old daughter has a spleen size of 24 cms and currently her platelets are 13k. she also has neutropenia (0.7) and lymphopenia (0.3). Dr's are at a loss of why this is happening. Bone marrow biopsies show hypocellurarity. She has autoimmune hepatitis which is now cirrhosis. Has been on 100,000 genome project to see if anything could be found in her genes but that has a drew a blank. At one point they were deciding to do both liver transplant and bone marrow transplant but the risks are far too great. Best wishes Jacqui x
Wow thank you so much for that response. If you dont mind can I bring this up to my dr to ask if this may be possible in my situation?
Yes no problem. Her issues were found when she was 9. The spleen has continued increasing despite normal liver function tests but she also has portal hypertension and oesophagus varices. Her bloods have been sent all over the world looking for answers. Still awaiting results from bloods sent to Paris a yr ago. x
Oh wow. I hope that finds an answer for her soon. Only 16 poor thing 😢
I do have lymphopenia and my neutrophils are one number away from being low as well
Hi phoenix
What sort of scans have you had re portal hypertension? Several Ultra sounds found nothing in my case but a ct scan found mine. But I suspect you’ve already had ct scan..
Good luck especially re mormer’s input
Miles
I have had both and a doppler ultrasound. But I'm going to ask them to perhaps repeat the test now that the spleen size has increased again.
I have the same size spleen 😁 so snap 😂 I was tested last year for all of the cancers and got the all clear I was told by the haematologist that this is just the way it is now (she at my local hospital) but my transplant hospital not happy with that answer and are contacting them to look further into it as after transplant it did go to 18cm and has now gone back up my platelets are 45 and it's supposed to be 150-400 lol
I have just been told to be careful about knocking the spleen area and to be honest have given up worrying about anything I am so broken but I am working 😁😂😂😂
You were the member I was referring to in my initial post love. Was waiting for you to come on and give me a reply 😊
Hahaha I wasn't sure my dear 😘
But you know I love throwing my pennies worth in 😂😂😂
And is always much welcome 😊 I was hoping the Spleen in the post headline was sending you the bat signal lol
Hahaha on a serious note though it is just a precaution that they checking you out for cancer and I am positive it's nothing to worry about 😊 at least they on the ball x
45 is extremely low!! There's me panicking over my 113 count in July 😅. Hope they get to the bottom of it xx
Klodian my count was 9 in the hospital back in March and is only 18 now ! I'm wishing for 113 but I'll settle for 50 lmao
Oh wow Phoenix that IS low! When you said 18,000 I thought it was 180 or something. The lowest I remember being told after my cirrhosis diagnosis was 52. Must have dropped much more by the time of transplant but as I mentioned on a different post, I was blissfully unaware of most results. You must be spraying blood everywhere. I was at one point! Not vomiting or ...... but I had a couple of spotty looking things on my skin that kept bursting all the time and it was impossible to stop the bleeding.
That's just the thing my clot time is normal. When I cut myself it clots right away. I had 4 teeth extracted and implants put in my upper mandible just last month. Dentist also said bleeding was completely normal. No Mark's on my skin nothing. It's so weird.
That is so strange... Well at least whatever platelets you have seen to be working well.
Your lucky then even before I got diagnosed with cirrhosis I had to have platelets for any procedure and no matter how many times I tell the haematologist this they don't seem interested they just say it's related to cirrhosis I ended up saying so I have had cirrhosis since I was bloody born then lol
No kidding right? Not only that but after they did the transplant how.can they still say it's from cirrhosis
I wish I was kidding but some consultants are more interested than others so I am hoping when I do get sent back to the haematologist it will be a different one x
That's good for me 😂😂
I'm very interested in your case because you are the only one I ha e found who's situation is very similar to mine.
I know I haven't heard off anyone else with the same I am glad my transplant hospital want to investigate it further because I do think it will give us more answers as to why I got cirrhosis and why I am getting fatty liver again so soon after transplant x
The answers are out there. Let's hope the doctors can put the pieces of the puzzle together
Thank jojo I appreciate that. Xo
My hubbby was diagnosed with alpha1antitrypsin deficiency
He had a large spleen. Had liver transplant in 2011.spleen shrunk back.
That's how it should work 😊. I think I'm on the outside of norm with the size I have. The only two members here that have seen this size I believe is jojo and mormer little girl. Believe me I do not want a secondary disease by any means. I just am getting tired of being told it is due to my liver whe they cant prove it. They are just doing the old differential diagnosis. I. Hoping the hemotologist will have some insight as mine did shrink down to 20cm after the hospital it has gone up again to the 24 it is now. The hemotologist told me to.comenright back to her if it enlarged again
Mine peaked at 31cm. Was down to 28cm at last scan. 24 doesn't seem so big! 
I had splenomegaly from Polycythaemia for years before Budd Chiari Syndrome clotted up my liver.
Thank you Bill. Wow 31 cm! How the heck do you fit that inside! But you have proven my point a bit even further I think. Polycythemia and Budd Chiari are known causes of massive splenomegaly. Alcoholic cirrhosis is not. I gotta get them to rescan. Something else is def going on.
Thank you so much
Btw Bill it's amazing how the luck of the draw works isnt it. Both polcythemia and budd chiari are very rare and to have them both?! Jumpin! I suggest you start playing the lotto my friend 😊😊
I have jumped from this site to the MPN site lots of times asking myself if my liver fibrosis which began as a fatty liver was somehow related to polycythemia, it was actually the liver consultant who suggested that I see the haematologist who straight away after seeing my high haemoglobin, red blood count and haemocritic ( excuse spelling) readings diagnosed polycythemia.
He then sent me for a abdominal ultrasound scan on the 2 January and said that although I was under the liver specialist he wanted to look at my liver. I don’t know if my spleen is enlarged but I do get discomfort sometimes from there too.
I see him again on the 11 February and I’ve been told to allow 2/3 hours for the appointment to allow for other procedures if necessary.
I managed to find Bill’s site but there was no posts on there.
Hoping you get sorted out soon
Elaine 😊
I know he doesnt post much. You could messege him though?. With the polcythemia and liver disease what is your spleen size if you dont mind me asking?
I’ve messaged him about an hour ago. I don’t know my spleen size yet! I didn’t even know that it could increase and decrease in size 🤯 maybe I will get to know more on the 11 February. The haematologist told me not to worry about polycythemia and said although it is a cancer in the blood and can’t be cured it is manageable with a tablet. 😊 Happy me 😉
Yes that's true it can be managed quite well! So can liver disease! So though you have two little buggers inside you the good news is that neither of them are doom sentences. Keep in touch and let me know how you get on. Your forum name seems to suit you well. Your very positive. That's a HUGE factor in your health and treatment . 😊😊
Will do 😉
Ultrasound Followup
So sorry - still worry - about the diagnosis - missing fibrosis
Wonderful News - portal hypertension reversal
Liver transplant
Doppler Scan
