Living with ITP

Hello,

I am a 34yr old female who was diagnosed with ITP at the age of 7yrs old. Luckily, my last occurence that requited hospital treatment was when I was 17 yrs old. I have made some diet changes & do natural cleanses of the body about 3x a yr.

I just had a count done 2 days ago & it was 64,000 & I do not take ANY medication for this. My question is, I have to have some MAJOR dental work done & I am truly scared & worried about this. I hear so many things about the mouth being a very "high risk" area due to the gums & bleeding.

Can anyone give me some advice on what they have experienced and what needed to be done before & during a situation like this? Also, I am having a hard time finding a dentist in my area that specializes with patients like myself & knowing the percautions to take.

Thank you,
Carie

My advice would be to talk to your hematologist [or MD if you don't have a hematologist] and get his/her take on what you need to do for major dental work.
Also your dentist needs to know you have a low platelet count before he does any
work on you - in case you haven't told him.

You didn't say what your major dental work is so I don' tknow if anyone can give you their experience. I've had a couple root canals and crowns post-ITP.

I would doubt you will find a dentist who specializes in patients with a low platelet count - maybe you will but I've never heard of one.

Yeah, I'd be talking with my hematologist to see what he/she says.

Good luck!

I had a root canal done once by a dentist who didn't take my low platelets on board at all. He said afterwards that the tooth was full of blood and when he got in, it just came flooding out. He was very surprised. A couple of days later I had a count done and it came back as 8. I hadn't realised I was so low or I wouldn't have gone through with the treatment but still, it shows that it didn't much matter anyway.

Thank you for your response. I was told that considering I have chronic ITP and that 64,000 is actually good w/out taking drugs. I've read so many different things so I just was unsure & wanted some feedback. I find it surprising with so many that have ITP, that there arent many dentists that specialize in treating patients like us. :dry:

Even when my counts were high enough to keep me symptom free, but lower than "normal" (which varies from person to person), I would get a count before getting major dental work, or having minor surgery such as removal of moles, etc. If my count was below 50,000, my hematologist would temporarily put me on prednisone to boost my count for the procedure, then taper off after everything healed up.

It all depends on the procedure you are having done. I've had cleanings and fillings with counts around 50. I had four wisdom teeth pulled with counts of 100 and did just fine.

Really, your hematologist should work with you to get the counts required before you have the procedure. The dentist then wouldn't have to worry about doing anything special. There are a few dentists who are able to control bleeding for ITP patients, but I'd rather not rely on the dentist to control a problem once it starts. I'd rather have the counts controlled and avoid the problem. That's what they usually do for elective surgeries for ITP patients.

No one is probably going to worry about counts in the 60,000s. Mine have hovered there for decades. I had thyroid surgery a couple of years ago to remove a nodule (not cancerous but turned out I alsonhave Hashimoto's, another auto-immune disorder) and the hospital insisted my counts be at 70k before they would operate. I had IVIg transfusions done twice - once for the biopsy & once or the surgery.

Today I got results from a CBC earlier in the week and they're at 28k. I can't believe it. No bruising, no tiredness, nothing remotely close to what I have seen before when my counts went below 50k.

Tad makes a good point - before any kind of "surgical" procedure, getting a count is a good idea.

I just had an extraction of a wisdom tooth. My platelets were 78,000 when it was done and fell to 50,000 soon after. I think the worst part was that there was a minor bleed for a week which was really frustrating. I think if I could do it over, I would have stopped the gauze after the major bleeding stopped and stopped worrying about it. I had great anxiety over it for a week when when I left it alone it was fine. The fillings she did that day actually hurt more.

My dentist told me he could refer me to the dental hospital and get my tooth extracted there. It been ages since I went to the dentist because initially I had been on prednisolone and they wont do it anyways when you are on that. Then for a few weeks I kept having blood blisters so it detered me from going along. I guess I not got much of an excuse now and would kind of prefer being referred if I have no real idea what my platelet level is.

You were lucky Ann that he was able to stop the bleeding and that you didn't need to follow it up. Other people may have bleeding if their platelet count is low. It may not have been as low on that day even but low enough by sounds of it.

I was suprised just how much my current dentist knew about ITP though found it slightly frustating he wants to know my count that day - when I haven't had a blood test? I can't go on many external signs so it seems as on the whole mine can suddenly crash within a very short time span.

Hope you are braver than I at getting the tooth seen to