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Hi everybody,

how are you all doing?
I'm new to this forum and just wanted to introduce myself.
I was diagnosed with Trombocythopenia a bit over 3 years ago, during a routine bloodcheck.
My platelet count was around 90 000...over the last three years it has always been stable and everything else was fine in my bloodwork....quarter annual checks, with platelet counts varying between 77-130000. I don't usually have any symptoms and never had to have treatment. But my general physician and I decided at my last visit, that maybe it would be good to set up an appointment with a hematologist...just to set something up in case something goes eventually wrong, so that I'm already "in the system" or something.
Before that, my Dr. only told me, that I should come in immediately, if I'd experienced easy bruising, bleeding gums, increasing fatigue, etc..
So now, each time I did have a bruise I started wondering, if this was a "normal" bruise, meaning I banged into something and every other person would have gotten a bruise here,too, or if it was something more... Since my life is pretty hectic at times, sometimes I just don't know where I might have banged into something.
At the moment I've got 3 minor bruises on my legs, that I kinda know where I could have gotten them but am not 100 per cent sure of...also i have a single little petechiae on my leg next to one, nothing dramatic.
I've got my first appointment with the hematologist in 3 days, so we will see how my platelet count is going to be this time.
My question to you guys is, how do you guys usually determine when to see a Doctor and how do you keep calm?

Many greetings and thank you so much for your answers

danni

Danni - hello! Sounds like you have very mild ITP to date.

Most people here were either diagnosed by a routine CBC or had symptoms. By symptoms, I mean nose bleeds that don't stop, very heavy periods, or nasty bruises. My ITP bruises were nothing compared to regular bruises. They were huge (about 4 - 5 inches in diameter) and purplish-black. I knew I didn't bump myself and oddly, they didn't hurt when I pressed on them. Most people do say that.

One little petechiae is nothing to worry about and I'm not even sure that's what it would be. They normally come in clusters and can cover large areas. I've also had purpura, which is purple splotches all over an area of the body. You usually don't have to look hard for petechiae or purpura; if counts are low enough, you'll see them without really looking. People can also get petechiae without having ITP if they sneeze hard, vomit, or cut off the circulation somewhere on the body for a short period.

Having said all of that, some people have no symptoms at very low counts, but that usually means that the body is handling the low counts well and the bleeding risk isn't very high.

Everyone is different as to when to see the doctor. It can depend on recent count history, current treatments, symptoms or occasional monitoring if things have been going well. In your case, once or twice a year is fine unless symptoms increase. As for worrying, that is an individual thing and one that lessens in time. Some people are afraid of low counts and some are not. The treatments are worse than the disorder most of the time so that can be the hardest thing about ITP and I think the fear of treatment can be worse than the fear of low counts.

I hope your appointment goes well. I'm sure it will!

Thanks, Sandy

That helps a lot...

it's such a weird disorder..

I'm going to post how it went

I'm feeling so thankful to have found this forum ,because at times when you start thinking about the whole thing it gets pretty lonely.

There are plenty of us here. It's usually quiet on the weekends.

Hi Danni,

Hopefully the hematologist will help you feel less anxious. You shouldnt worry about a few bruises.

When I was first diagnosed 7 years ago, my legs were covered with bruises. I also had bruises on my arms and hands.

Now I can always tell when my counts are going low because I get bruises all over my forearms from resting them on a table. I will get petechia all over both legs. That is when I call the doctor. I dont panic about it anymore, I do respond to treatments although the side effects are hard at times.

Thank you, Dru, for your response.

Yes, I can imagine that therapy can be tough..
My sister just finished a high dose Prednisone treatment for another rare autoimmune desease and I saw some of those sideffects...
But the meds did help her wonderfully. For that I'm thankful.

I wonder what causes this disorder.... I know, that nobody really knows...

If there is a genetical compound to it, or could it even be exposure to certain things, viruses, chemicals, etc?
I'm just wondering, because in my family over the last 3 years, my dad, my sister and I have been diagnosed with some sort of rare autoimmune or autoimmune disfunction related desease....
Even though we were all super healthy before... makes me wonder....

A genetic predisposition to autoimmune disorders can run in families. Usually, family members will all have different ones, but occasionally they have the same. Sometimes all it takes is a virus or some other trigger to get them started. Some people can also have more than one; that is fairly common too.

Which autoimmune disorders do your Dad and sister have? I have ITP and Lupus and my daughter has Graves. I have a sister with Discoid Lupus and another one who had ITP years ago.

Well, my sister has Autoimmune Encephalitis and my Dad's isnt't really an autoimmune desease, but has something to do with it, is Multiple Myeloma...

so all not so nice stuff....

I believe things can run in families. Auto immune diseases can seem to cluster in families. Multiple members having different autoimmune disorders.

Which makes me wonder sometimes is there a gene or a defective gene that runs in families. Making member more prone to getting immune disorders!

For example Asthma (not autoimmune) but runs in my family: myself, a brother, my daughter, my mother, 2 nieces, nephews. We all have different types of Asthma and triggers. Some have seemed to out grow it and others have it for life.

I think it's universally accepted that Autoimmune Diseases have a genetic basis, sharing, as many of them do, specific gene loci.

This article is interesting and talks about which particular diseases occur together in families.

genomemedicine.com/content/4/1/6

Right Ann

This is where triggers and environmental factors come in. Each of us has a different trigger that started our ITP. And because we are all different people it effects us differently and that is why there isn't 1 standard treatment that works for everyone!

Hi there!
I've had ITP for five years now. I've learned over the years, since I've never been in remission, that you will learn what is normal for you. The only time I go to my doctor is when I have new symptoms I've never experienced before. For example, just this past year, I experienced really bad pains in my foot after having the influence virus. My foot felt swollen and was painful to walk on. I immediately made an appointment for the doctor, and sure enough my platelets were low, like1500. I was bleeding and bruising from the muscle at the base of my foot. I'm already on a 5 mg dose of prednisone every other day, so they had to boost my prednisone to 50 mg for four days to bring my platelets back to a safe level. Pretty much instantly my foot felt better and I was back to my normal dosage of prednisone and my platelets were back to a safe level. So look out for things that are not normal occurrences for you.
For me, I have found having bruises and blood spots on my body all the time is a normal thing for me. I have learned not to worry about them unless they are abnormal, like the ones I had when I was first diagnosed.
What keeps my mind calm is have a a standing order at the lab for a CBC. I can go any day, any time to get my platelets checked out if I'm worried something is going on.
I hope this helps a little:)

@ Samara, a standing order for a CBC? That sounds cool, do you get results the same day? How does that work exactly?

@ Ann, thank you for the link! I'm going to check it out!

Winnifred, yeah, I am thinking that ,too.
I'm wondering about the fact that in my case all of us developed the disorder at around the same time frame... this to me is kinda interesting, too..

I have a card for a particular lab that states I have a standing order to test CBC every three months, since I'm being monitored, or PRN ( whenever you want to go into the lab). My GP set this all up for me. I get the blood test done, maybe wait a day or two to allow time for the results to come in. During that time I make an appointment with my GP to see him and get the results. Labs can't give you your result unfortunately. But it defiantly eases the mind. You don't have to worry about making an appointment with your GP/ Hematologist to get a lab write up. Waiting for an appointment could take weeks, which is too long when worried about a symptom. A standing order for a CBC takes away a lot of the waiting game, which can be super stressfully when your experiencing symptoms. If you are having a worrisome symptoms, YOU can decide to check your platelets and either wait to see if your doctor calls or go in to see the results. The best part is, if something is abnormal with your platelets ( abnormal for you) after having the CBC done,your doctor will call you to come in, which makes waiting for the results that much easier. No news is good news:)

You can actually set things up to get it faster than that. I used to go to my Hemo's office for a CBC anytime I wanted to, and got the results right away. I only did that when I knew counts were down in the 20's for a few weeks and I thought they might have dropped to single digits.

You'll find the set up that is right for you. Your counts may never drop to lower numbers and if they do, it might be due to getting sick in which case they usually rebound.

Today is the day! First time to the hematologist...

Let's see how it's going to be...

Good luck!

Hi Danni,

I am a bit late for wishing you luck, as I guess your apt will have happened by the time you read this. I hope it went ok.

I am no expert on ITP, but this forum is the place to be if you are new to it, like I am (2 years).

I only had two big flare ups, really low counts. In between I was always less than 150, so considered suffering chronic ITP. My symptoms on the really low counts were pretty obvious for me, you are talking in excess of 20/ 30 bruises appearing pretty rapidly and no way they were from impact. Nose bleeds, rash. The most recent flare up I had a bruise that was about 15 inches long, which was growing, as I assumed I was bleeding into the skin, on my shin.

My hospital were good, as when I tell them I have ITP and I am on their system, they checked my counts and gave me the results in less than 5 minutes. ( I am lucky my hospital is 10 mins away, and I live in a large city). They then put me straight on meds.

I know everyone is different, and this is just my experience.

Hi guys,

I'm back and the visit (itself) went well!
The Dr. was really nice and seemed very knowledgable....
He ordered a lot of bloodwork for me, so I got that done also ( and didn't faint! Praise God!)
So let's see what the test will show. He says probably I've ITP.

We were able to talk about some of my history and we came up with that my immunesystem really has some problems...

anyhow, I'm glad it's over for today....

I have my next appointment in a month....

P.s: I had a huge steak for lunch with a Wendy's salad and a baked potato, to make it aaaall good again

Johncarp , how did they discover you had Itp? Did you have symptoms and saw the dr. because of them or was it more because of a routine exam?

Hi Danni

I am glad your appointment went well. In answer to your question, I erupted in spontaneous bruises. I had one by my eye, and someone at work asked how I got a black eye? That evening I noticed I was covered in bruises, there were too many to have been knocks, some in strange places, I remember I had a large one on an ankle spreading to my foot.

I went to an out of hours doctor and was referred straight to hospital where they confirmed ridiculously low platelets. They told me they suspected ITP straight away, and I carried the Probable ITP diagnosis, until they had done every blood test imaginable, I had a bone marrow biopsy, and CT scans of my chest, and abdomen. They then settled on Confirmed ITP, on the basis everything else was excluded.

wow, that sounds tough....
did the bonemarrow thing hurt a lot? My hematologist didn't mention that he wanted to do one, but I guess this could still be on the list.....

It's not usual to do a bone marrow biopsy although some haematologists like to. If done by an experienced doctor it's fine and doesn't really hurt.

I agree with Ann....a bone marrow biopsy isn't necessary unless the blood smear shows something unusual. Some doctors do it anyway.

It was only painful for a second. By the time I could have said "ouch", it was over. It only took about 20 minutes and I left with a band-aid on my butt.

Thanks guys! That explains so much... I guess my blood smears over the last years must have looked fine....other than the low platelets.

Hi Guys, wanted to update you guys on the findings of my blood exam... i got the results yesterday... So... the hematologist says I have APS not Itp.... Antiphospholipid Syndrome and he says I'm at increased risk for blood clots... I started taking baby aspirin as of yesterday.... I still haven't read much about the condition, just trying to let it sink in.... My platelets were 74...but on another closer look of it he explained tome they werew really 120 , and I have plenty platelets just that they look bigger or so.... It was had to follow everything . The diagnosis has to be confirmed in 12 weeks again though...so it's not a 100 per cent official quite yet. But he seemed pretty confident about it....

APS and low platelets sometimes go together. Low platelets are a symptom of APS. I have the antibodies also and am supposed to take aspirin. As long as your platelets stay where they are, you shouldn't have problems with that. There are some really good articles about APS. Do you know which antibodies you have? I'm amazed that he did the labs for APS; most don't.

I'm really happy ,too... he seems very knowledgeable..... I'm glad I know at last what's going on.... well... I think IgM is high.... is that what it is? I still don't really see through all of it... I think the lupus coagulant thing was negative....
I don't know , I'm still kind of confused.... My worries kinda shifted from one thing to another... Should stop worrying alltogether I guess i read some of the symtpoms of aps and some things start to make more sense for me.... I have dealt with migraines and such and realize now that these can be symptoms af aps......