My platelets are 16k and they want to remove my spleen. Any advice? Plus I need some dental work. I wonder if it's OK?

[Mary72]

I wonder does ITP effect the health of your teeth? Mine are breaking.

[sailor]

Hi Mary72. A platelet count of 16 is not necessarily the only reason for spleen removal. The general view of ITP specialist is not to have this done, unless there are other medical reasons. Do you bleed? Many who do not bleed, live a normal life with counts of less than 16 and will only have medication for surgical procedures to raise their count to a required level. I have lived a normal life for over 10 years with a count of 10, spleen intact. Just had bypass surgery and had medication to raise count to over 100, but now back to normal, no medication and only annual checkups with my consultant. Look at the itp support association web site (see above). There you will find under forum a list of centres where specialists in ITP are located. You could always ask for a second opinion before agreeing to a splenectomy which is a major operation and will require penicillin possibly for the rest of your life. Added to this, the spleen may not be the cause of ITP. Platelets can also be destroyed in the liver.

In respect of dental, I suspect any dentist would require a count of 50 for tooth removal, but if you only require fillings, then there should be no problem providing your general health is okay. Good luck.

[Mary72 in reply to sailor]

Thank you so much for your response and information. I truly haven't a clue if there's other options or not. No I don't bleed alot on the outside, but I'm covered in huge bruises all over my body. And looks like I have been beat. I'm tired all the time and very short of breath. I almost feel like the shortness of breath is do to the Rituximab treatment I received last year. Because that's when it started. Although my doctor will not confirm shortness of breath as a side effect. I do not have insurance so I figured I really had no options. So I will definitely look in to your suggestions.

[Hidden]

If you have shortness of breath do push to have a chest xray although we have ITP we can still get clots anywhere. If you have been taking prednisone at any time thne yes it can have a direct affect on your teeth and many others have issues with them breaking down. You can visit treatments such as nplate, dapsone, vintricsine, promacta, ivig all before having your spleen out

[Mary72 in reply to Hidden]

They have ordered me to receive 60g of ivig before they remove my spleen. But I am uninsured and having a hard time with the cost.

[NickyD]

Hi Mary72, I had my spleen out and it did not make any difference to my ITP. I did not know that there was a test you could have to see if the spleen is destroying your platelets. Had I known i would have had the test and then i would not have needed to have the splenectomy. I take penicillin twice a day to offset the effects of the splenectomy. Stand your ground and keep your spleen is my advice. Nicky

[Mary72 in reply to NickyD]

Thank you for sharing your story with me. Do you remember the name of the test? I am going to ask my doctor about the test for sure. So is there any way they can bring your count up? And is the penicillin to just fight off infection or does it effect your platelets? And have they found out what caused your platelets do drop if not the spleen? Sorry for all the questions. And thank you.

[Hidden in reply to Mary72]

It s an indium scan but only a few places do it. I am guessing you are in the states if insurance is an issue for you too. There are programmes that you can apply to for help with meds. research on pdsa.org might help

[NickyD in reply to Mary72]

Mumofwill has given you the name of the test. The penicillin is to fight off any infection and has no influence on my count. The splenectomy was one of seven different treatments that i had. The one I am on now works for me - i take Mycophenolate twice a day. it is a drug used by people who have had liver kidney and heart transplants and it has levelled out my count. happy to answer any questions. Nicky

[amberyard]

You have to be above 50k to have dental work done.

Also how long have you been at this?

We tried everything before taking mine out and now I'm refractory ITP.

ivig's can cause shortness of breath (I've been dealing with that).

They also have an program where they will cover the cost as long as you meet the income level. I'm on the program and If you can find the info online you can always call them.

gammagard.com/primary-immun...

[amberyard]

Also I had my spleen out 11/25/13 and don't take antibiotics. If you take antibiotics daily your body will build up a tolorence and that won't help when you really need them.

[Danison1337]

did you check if you are not consuming artificial sweeteners? since they cause low platelet counts also.

[ancientadolescent]

Think very carefully before agreeing to a splenectomy. There are alternative procedures that should be tried. One expert for advice is Dr.Drew Proven based in London.

[ancientadolescent]

I had to have some teeth removed and my consultant prescribed ivig to raise my platelets to a minimum of 50. This was achieved and no problems with the op.

[Hidden]

Amber it's not true that you'll get a tolerance from antibiotics when taking them as prescribed. In the UK it is recommended that the asplenic take antibiotics. You are not from the UK so your advice is not correct. I also take antibiotics daily as I have an immune deficiency. It's normal and necessary for some people.

[lynfraz]

Hi I was diagnosed 6 years ago with ITP my count has been as low as 12 and as high as 66, I vary between those two counts and have had no treatment so far. I have a full blood count every 3 months or more often if I wish. I monitor my own symptoms which at the moment are bruising and petichea, if I start to bleed from my mouth, lips, gums or anywhere blood should not be I must go to hospital asap. I am 58 years old and work as a healthcare advisor.