Is spleen removal a must if the platelets don't increase

[Esmiralda]

Hi, im Esmiralda Ann from India and I'm 26 years old married recently and no kids. I have been on meds for like 8months and the doctor told me there is no point waiting more than this so he's suggesting removal of the spleen. My platelets was 15 in the beginning and onli few bruises after I started medication my platelets are fluctuating between 50k to 120k and I don't know the stability of I stop meds so is it necessary to remove the spleen. I'm worried 

[Hidden]

If you dont bleed when you have lowish counts and can go about your daily business there is no reason at all to have surgery.Many people life with low numbers if not symptomatic. Many other options before surgery as well

[GeeAyGee]

My platelets run at 30 to 50 most of the time, with a dip or a rise now and again. I am not on any medication, I have a 3 - 4 monthly Blood check and that's all. Having your spleen removed is a big step and it doesn't always improve your platelet count. Have you seen a specialist or is this your GPs opinion? Because you need to determine where the platelets are being destroyed, if they are being destroyed by your liver then having your spleen removed is not the answer. Have you had a bone marrow biopsy to check if you are producing enough platelets in the first place? You need to ask all these questions and more, before you even think about having your spleen removed. Don't be rushed into a decision by anyone, there is no cure for this disease, just good management, and that starts with you!

[Esmiralda in reply to GeeAyGee]

Hellooooo yea Im done with the bone marrow test n it shows my platelets production is good... I'm gonna try different treatments to check which is gonna work. Thank you so much I'm gonna say no for spleen removal now 

[Rockette62]

Here in Australia we are usually not treated unless our count drops below 30,000 unless we have active bleeding. Spleen removal is not a cure and many people find it doesnt help. There is a test, Indinium scan, which will show if the platelets are being destroyed by the spleen. Sometimes its the liver or you arent making enough in your bone marrow. Removing your spleen has a major rffect on your immune system for the rest of your life. Internet checks with legitimate websites will give you more info.

Best of luck Dawn

[Esmiralda in reply to Rockette62]

Hey dawn thanks alot well here in India I don't think they have indinium scan will check on dat it's the first time I'm hearing this cause my doc has never spoken to me regarding this scan 

[holcotts]

Yes, i would say the same as everyone here. Dont be rushed into a big irreversible operation which makes you vulnerable to infection unless your symptoms are awful and until other options have been explored. I have anti-d every few months (when my platelets drop to 20 ish)  and it seems to work - and when I asked on here there were loads of people living quite happily with platelets 50k -120k. If my platelets didnt go below 50, I wouldnt do anything!    Do you bleed a lot?

[Esmiralda in reply to holcotts]

Hi well by God's grace I did not bleed. When I was first diagnosed I had a platelets count of 15k with no symptoms jus a few bruises on my leg 

[lc12345]

Hi, I had my spleen removed 15 years ago as steroids were not helping anymore. I had a relapse year later and then 9 years of remission. However, I then relapsed again but was lucky enough that by that time science advanced and now there were 3 more lines of treatment for me to try in the UK. As I heard nowadays you also can do spleen test before making decision to make sure it is actually destroying your platlets (which is not always the case). As well as you can try all lines of treatment before making such a drastic decision!

[sarae614]

Hi 

There is a WhatsApp group for itp, you can check that if interested

[Esmiralda in reply to sarae614]

Hi how do I get into the group 

[GlendaInIowa]

I agree. That is a pretty major surgery.  My normal is 20-100 with a variance on both ends. Drill down on what is causing your flux and do some research. Jumping in to a spleen removal isn't always the best answer.  

[Nespinoza]

Hi I had my spleen removed back in 2007 after surgery my platelets we're at 330,000. But one week later slowly not surely they started getting lower and lower so as u can see it really didn't help me out at all I do monthly blood draw I'm at a 210,000 right now after visiting my hemotologist on April 8.Like all the other post say don't rush and yes ask questions.... I get IVIG that's what helps me out the last one I had was I'm Sept 2015. Since then I have been doing good and I don't take any meds at all....  good luck 

[shanistrano in reply to Nespinoza]

hi,hope you are great..i wanted to ask you about IVIG? what is it? my dad had platelets disorder and the doctors removed the spleen.platelets blood count increase to 150,000 but dropped down to 6000 after one week.he is still taking revolade but blood cells are not staying within 6000-16000 range since his operation (3 weeks ago).Can they still increase or what else we shoulddo? any suggestions?

[DAVIDJOEL in reply to Nespinoza]

What were your platelets before surgery? Sounds like spleen removal did the trick...

[Nespinoza in reply to DAVIDJOEL]

Hi honestly when I got my Spleen removed I was already in the hospital due to me hemorrhaging from my period so I was given a couple of bags of blood transfusion and platelets as well. Once my bleeding was under control and after I was given platelets of course I did get blood drawn but at that time I was so exhausted I didn't even ask how my platelet count was but I'm sure I was in pretty good numbers because I had the surgery but from what I was told I was bleeding out during surgery as well. But thanks to God everything came out good. I haven't had any meds since September 2015 that's when I was last in the hospital i was given IVIG. I'm not taking no kind of meds and I see my hematologist every 3 to six months and blood draw every 3 months. I can say I have been doing pretty good i have not changed my life style. I drink but not to the extreme I eat the same haven't changed that but well just a lil but that's a different issue that has nothing to do with my platelets. I have been running in the high 100,000. I see my hematologist this month and see what he tells me and we will go from there but I do get blood drawn before i see him

[Padram]

Hi Esmiralda, please don't rush to get your spleen removed. Infections can be a lifelong problem if spleen is removed. Please read all the replies that caution you not to take a major decision just because the doc wants you to go through one. Have you tried papaya leaf juice or extract? 

[Esmiralda in reply to Padram]

Hi padram, I hav taken papaya leaf juice for almost 2 months in the beginning but dint work for me. Is der any another treatment to try? 

[Padram in reply to Esmiralda]

Hi Esmiralda,  I would suggest continuing with homeopathy.  Spleen removal success rate is not great. I am sorry I don't know of any other meds.  Hasn't homeopathy helped you?  

[Esmiralda in reply to Padram]

I tried homeo for 2 months but dint work... Should I continue? 

[Padram in reply to Esmiralda]

Hi Esmiralda, ITP is an auto immune disorder. The body's immune system destroys healthy cells mistaking them for harmful bacteria/ virus. So please understand that there is no magic potion to set right the immune system. Homeo will take some time. You say it didn't work. Do you mean that your platelets reduced further, or that they didn't increase to normal levels ? Whatever meds you take, going back to normal count permanently is a mirage. It is not going to happen. The count will keep fluctuating. And stress is not going to help. You said you don't bleed. Then why the hurry to remove your spleen? And fatigue is part and parcel of any Auto Immune disorder. Papaya leaf juice has helped many in maintaining the level at 30 k. And we should be happy if the count stays there. 

The replies given by all these wonderful people should guide you to take the right decision. If you are still unconvinced, may your good fortune help you in making the correct decision. 

[Saba119 in reply to Esmiralda]

Hi homeo will effect slowly.. As you were already on steroids I believe so as the body got used to steroids it will take time to accept homeo

[takari]

There is a nuclear test, an Indium scan, that can tell you where your platelets are being sequestered. It can be in either the spleen or the liver. For me it is mixed, meaning both, so a splenectomy would not work for me. Taking out my spleen is a closed subject for me now because it won't work. The test won't tell you if the test will work though because even if your spleen does all the destruction of platelets it may still not work to remove it but your odds of success are around 90%. Ask for the test. I am in the US and everyone told me that you can't get this test in this country but my hematologist got it for me so don't listen to others, insist. There is a great support group for ITP also on facebook.

[nazmeen]

Hello please don't remove spleen. I had ritaxamub at xmas and my platelets are now 370. I don't eat or drink anything cold from the fridge. All my drinks are room temperature I never drink fizzy drinks coke etc.  I eat kale n beetroot now. Try changing your diet it may help. I hope I have helped in a tiny way. My doctor said spleen removal is last resort.

[ITPAffecty in reply to nazmeen]

Hi,

My count is always below 20k from 5 yrs and tried all costly treatments without any use. Now not on any medication except taking 'Revolade' tablet from India which is very costly. I will take only during periods, 4 or 5 tablets before the date. It helps to increase platelets for 1 week or so. After that again dips and again bruises all over lower body.

Will this Kale and Beetroot helps? How are you taking them and how freequently?

[palash199]

Hi I lived in India, my city Kolkata. My sister age22, but her 5 month pregnancy CBC done gynee madam her count just 5 and not admitted my sister. Then hemo sir start steroyed, and bone marrow test. Report seen my sister surface itpitp. But 3 month taken medicine her count 10 to 12.but 32weeks her count 4 then gynee and hemohemo decide that baby withdrawal. Hemo sir give ivig her countcount goes up 140 just 32 hours then baby withdrawal. GyneeGynee and hemo know what is itp. Two doc treat my sister very carefully. Per week check my sister and two doc sitting one table andand talk each other. Here is excellent doc for itp. After birth oneone month later check my sister her count only 3. Hemo doc toldtold she is not bleed so do not admitted in hospital. Doc told any process or any medication you rise youryour count 30 you save. Doc toldtold do not spleen withdrawal, this is last option. Doc prescribed somesome medicine and told you take allopathy med and some other treatment, ( homeopathy or ayvedic, etc).excellent gynee and hemo doctor in my city. Two doc allall time told my sister be positive. After 3 month later baby and mothermother are OK. Baby is total fine buBat baby count check every month up to six month. But baby count every time 300 up, baby boy take vaccine all. So do not worried.

[nitindhureja in reply to palash199]

Hi Palash, did you sister count increase after few months of pregnancy or that is still same?

[exxxon]

all I know is if the spleen is killing the platelets and the liver is ok then yes do it but if not the spleen then don't do it .. there is a test for that so do that first .. jimmy / stay in touch