New to Being diagnoised to ITP

I was wondering with anyone if you have ever heard this statement from one of your other doctors about ITP? I was talking to my Dentist the other day and she told me that ITP can morph into Hodgekins disease? Now mind you that Hodgekins disease, runs on my mother's side of the family (my grandfather died from it long ago)so it kinda freaked me out when I heard that from a Dentist? Since I am so newly diagnost and a little skiddish to begin with that little juicy tidbit that my Dentist told me did NOT sit well in my mind!

Yeah, I hope that they do have more info on ITP for the public to understand it more! It would help health professionals to tell patients the right info instead of freaking people out. BTW, today my blisters are a little less itchy today for once in a LONG LONG time (once in 8 years!):woohoo:

Lady Elly,
I feel the same as you do, but at the time we were visitors and I didn't want to argue with the "nurse". There are many causes of ITP--and for each person, there is a different cause. We just need to be careful for things that aggrevate ITP and make it worse.

Smidgen:

ITP can not 'morph' into anything. Low platelets can be the first symptom of other disorders that may not show up for a while, but that is rare.

I wouldn't give a second thought to what the dentist said.

Hodgkins disease doesn't have anything to do with ITP so it was a daft disease for the dentist to pick. A low platelet count is not going to be the first sign of Hodgkins. Maybe you could make it your mission to educate your dentist!

Ummm... I don't think that I can educate the Dentist because she is "confident" that she is right about the issue. So what I am going to be doing is just educating myself on ITP because I can only manage myself and not a "professional"

Honestly, there is so much out there on ITP that I am just doing good to keep my head above water with all of the info. Btw, I have been drinking my green smoothies to keep up my iron numbers and my blood specialist is so impressed with the numbers! Yeah, I am so glad to see that doctor smile at me for once it is unreal! It made my day! Does anyone else drink green smoothies to keep up your platelet numbers? If not try it out, the receipes are all over the net.

I am going to look up the green smoothie!!! Have issues with Iron levels. #'s are fine now due to Ferrous Sulfate. Dr said I could stop taking it and recheck in a year. In the past when I stopped, I could physically tell when the count was low. I felt it should be checked in a couple months.

I agree with you, Dean. It seems lately the doctors don't like to check things very often (at least, that's the case with my doctors). It now seems just check it in a year. I like to catch a problem before it gets too bad. But, I would also like to tell you that when my iron levels were low, I would cook black beans (very high in iron) with my meals. Eventually, they started to go back up (I was taking one mulit-vitamin).

it does suck when doctors scare you. it's best just to stick with what YOUR hemos/specialists say becasue when i was in hospital a lot of nurses and registra doctors told me that i HAD to take out my spleen and that it was the only option. i felt like they were scaring me into it, even though we had multiple discussions with my specialists about it.

it is also unnerving when doctors tell you that you can get a whole bunch of other diseases (hodgkin's, endometriosis, diabetes etc..) that are caused by itp. I havnt been told that before, but i can imagine how scary it would feel. The goal is to help quality of life for itp and it seems that they can make it worse, (although most doctors are great and want the best outcome possible!)
and to -smidgen- she is a dentist! she works with teeth and gums not blood and platlets and hodgkins, that is really annoying that she has scared you like that! i dont know about your doctors but i know mine would get really annoyed at nurses and registra's for telling me "doom and gloom from itp"
i dont understand why there isn't more research on itp after so many years waaay beyond when i was diagnosed and theres still really nothing about it, maybe this maybe that i dont know but breast cancer got a lot of attention and now the survival rate is around 80/90% i think, before all that research it was a lot lower, i undertand breast cancer is more common and can be lethal but itp isnt THAT rare either, and it can for some people it can be pretty lethal.
the cure could be something as simple as a rose water spritz hahah ok probs not but still ya never know! we just need more research, therein lies my mission! :lol:

I am so glad that I have a back up team to help me with my ITP because when I get miss information I just check it with my specialist and it seems so much more clearer than before.

For me, the green smoothies are wonderful and help me with energy and so many other issues that don't relate to ITP. For the ladies in the room green smoothies help with yeast infections and hair groth! Plus the best part is that it is cheap to make and doesn't cost that much to get the supplies from the store ($11.00 or a little more) for a whole weeks worth of smoothies! WICKED! I have to be honest, you all have stimulated me to write some information about green smoothies in the future. So that other ITP patients can benefit from the simple and easy to make drink! :woohoo:

melasund wrote: i dont understand why there isn't more research on itp after so many years waaay beyond when i was diagnosed and theres still really nothing about it, maybe this maybe that i dont know but breast cancer got a lot of attention and now the survival rate is around 80/90% i think, before all that research it was a lot lower, i undertand breast cancer is more common and can be lethal but itp isnt THAT rare either, and it can for some people it can be pretty lethal.
the cure could be something as simple as a rose water spritz hahah ok probs not but still ya never know! we just need more research, therein lies my mission! :lol:

To be fair to the poor doctors doing research, including my own consultant, there is a fair amount of research being done for ITP. They now know for example that it is not just a problem of premature destruction of platelets but a problem of decreased production too.

If you search on the google scholar search engine you will find lots of papers written about ITP, including the pathogenesis of ITP.

I have also personally taken part in the drug trial of Nplate as well as given a fair amount of blood for various studies. So research is certainly ongoing.

yeah i know!! it just feels really slow.. but then again i'm just impatient! with nplate, is that a life long treatment? it seems that a lot of people that have it end up with lower levels then what they started with once they stop taking it, and that scares me a bit. so was just wondering if it could be a consistent treatment like insulin or something?

Nplate can be a life long treatment although some go into a spontaneous remission and can stop. Either they were pushed into remission by Nplate or they would have had a remission anyway. Who knows?

If a person is not in remission and stops using Nplate then their platelet count is likely to fall again. But their count must have been very low for them to use it in the first place so it's just getting back to where they started in reality. I started with a count of 2 so if I were to stop I could hardly be any worse off than before.

it would probably be my preferred option if it can be a regular treatment, do you have any side effetcs form it? last time i checked my platlets were also at 2k if they were the same as that now i would look into nplate. i probably wouldnt do any treatment if they were around 30k but i havnt had a splenectomy i really dont want to have to go down that path. i think nplate might be one of the treatments tried after splenectomy? but it sounds better then steroids, which didnt really work well for me anyways, but the side effects form steroids put me off!
was brutal.

I don't know what the rules are about Nplate in Australia but in England we don't have to have to a splenectomy first. I haven't had one.

I don't have any side effects with the drug. The most common is headache but I've never had one.

The idea with Nplate is to get a count of around 50 so you wouldn't want to use it if your count was near to that. It's really only used for those with very low counts in order to get them up to a safer level.

Believe it or not, ITP has come a long way since I was diagnosed in 1998. I won't even begin to list all of the new areas of research, the discoveries and the treatments, but take my word for it.

There are many, many autoimmune disorders and not one has a cure. ITP is no different.