Symtoms of ITP

The symptoms of ITP tend to vary in intensity between those effected by it.

I tend to have a fairly mild response to a low level of platelets, compared with some of the nasty images I've seen on google.

According to the US NIH;

Having a low platelet count doesn’t cause symptoms. However, the bleeding that a low platelet count can cause may have the following signs and symptoms:

• Pinpoint red spots on the skin that often are found in groups and may look like a rash. The spots, called petechiae, are due to bleeding under the skin.
• Bruising or purplish areas on the skin or mucous membranes (such as in the mouth) due to bleeding under the skin. The bruises may occur for no known reason. This type of bruising is called purpura. More extensive bleeding can cause hematomas. A hematoma is a collection of clotted or partially clotted blood under the skin. It looks or feels like a lump.
• Nosebleeds or bleeding from the gums (for example, when dental work is done).
• Blood in the urine or stool (bowel movement).

Any kind of bleeding that's hard to stop could be a sign of ITP. This includes menstrual bleeding in women that’s heavier than usual.

Bleeding in the brain is rare, and the symptoms of bleeding in the brain may vary in severity.

Exhaustion
Some places on the internet deny that ITP should cause you to feel tired and leave you battling with exhaustion (maybe this is true if your platelet levels are above the critical zone) but my Drs are never surprised I'm exhausted. This is one of the first things I notice and the one symptom I find the most difficult to deal with especially when it leads to lethargy and the sensation of limb weakness.

Headaches
I sometimes get sharp, short lived headaches, this is probably due more to the weariness factor than ITP itself.

Mild Paraesthesiae
A tingling or burning sensation in the skin like pins and needles.

I have increasingly been getting this, especially when I'm in bed. It's not as uncomfortable or as intense as pins and needles but more like a random tingling in the toes/foot and fingers. Lately I've also been getting a sensation in parts of my hands that I can only describe as a burning, stinging feeling, as if I'd recently scolded or burnt it.

This may be a reaction to the steroid treatment rather than a symptom of ITP.

Petechiae (Blood Spots)
Flat roundish red spots under the skin which are caused by blood leaking from the capillaries in to the the skin. These can be anywhere on the body including inside the mouth.

I tend to get them most commonly on my chest, arms and legs, especially around my ankles. They can be quite scattered or in clumped in 'crops'.

Purpura
Are larger, darker spots or areas of bleeding that become purple or brown bruises caused by bleeding under the skin.

Bruising
I get a lot of bruises when my platelets are low and I couldn't tell you where I'd get most of them from. They're ususally the yellow or brown variety but occasionally I get a lovely purple one. The legs seem to be most vulnerable for this.

Bleeding
[note: If you have ITP and you hit your head go to your GP or ED as it may cause bleeding on the brain.]
Some people maybe have blood in their stools or urine or related spotting. Women may have much heavier periods. You maybe susceptible to nosebleeds and bleeding gums when brushing your teeth. Blood filled blisters may appear in the mouth and on lips. If cut, bleeding will be much, much slower to stop. "In general the more bleeding symptoms you have, the lower your platelet count" according to the PDSA.

When my platelets are low I get bleeding gums on doing my teeth and they are sometimes quite raw. I don't tend to get nose bleeds, though I sometimes have small blood clots on blowing my nose (what they call mild epistaxis) and spotting. This was the case even when my platelet count was 2!! unless I'm cut or punctured I don't tend to bleed.


I hope this gives you an idea of what to look for if you think you, or someone else you know, has ITP. Remember some people will have a much milder set of symptoms than others.

Things go Pearshaped

By the 10th of January my Prednisone had been reduced to 10 mg and we had a plan in place to ween me off the steriods. My blood results showed my platelets were holding steady and the levels increasing. I seemed to be sitting pretty.

I was to take the 10mg dosage for 4 weeks then, all things going well, drop the dosage to 9mgs for another four weeks and so on.

On Wednesday 2nd of Feb a friend and I were out and about, making our way slowly to the book launch of a local writer. We were sitting in her car and I was doing my makeup in the sunshade mirror (as you do) when I noticed a rash of tiny petechiae on my neck and creeping down across my chest.

Up until then I'd not noticed anything so it had come on pretty quickly. I mentioned it to my friend and she offered to take me in to the hospital for a blood test. This we did and I was in and out in about five minutes.

Forty-five minutes later my cell phone rang. My heart leapt into my throat when I recognized the distinctive accent of my hematologist. Obviously something was very wrong.

My platelets had dropped from 185 to 23 in little over a week.

As calmly as I could I asked her what we should do. She advised me to double my Prednisone to 20ml and to go for another bloodtest in a week. It would take my body about five days to process and respond to the increase in my steroids. However, if I things got worse (unstoppable bleeding or very nasty and unexplained bruising, etc) I was to go for a bloodtest or to go into ED.

In the days that followed I had a little gum bleeding but nothing major. By the following Monday I had smatterings of tiny red petechiae all over me, especially down my calves and around my ankles. I was also becoming dotted with small brown and purple bruises on my legs, none of which I could account for.

On Tuesday evening I discovered a patch, about the size of an old fifty cent coin, of closely placed bright purple petechiae, each about the size of a pin head. I found another much larger purple patch on my chest. I'd never had anything like this before and it startled me.

I wasn't due for my blood test until Thursday but it seemed to me that I wasn't improving so the next morning, Wednesday, I took myself off to the lab for another test.

When I phoned my hospital nurse later that day it was to discover that I was right. My platelets had continued to drop. I was now sitting on 5!

Within 45 minutes my hematologist was on the phone instructing me to come in for an infusion of Immunoglobulin (a blood product of platelets).

It seemed we were back to square one.

How my Story Began

This is an account of how I came to be diagnosed with ITP.

Please feel free to share your own diagnoses experience in the comments following this post.

I'd been feeling tired, which wasn't anything new for me, but on Monday 11^th October I noticed I had a few petechiae or blood spots on my right forearm [note: The arm in the picture isn't mine]. I didn't think much of it at the time.

However, the following day I noticed the spots had spread so I had more around both wrists and up onto my forearms, a few on my chest and more down my legs, especially around my ankles.

On Wednesday, while at work I asked a few of the the nurses if they had ever seen anything like it and what they though might have caused it. I was tired and headachey, but other wise felt fit. They wondered if it was a reaction to a multivitamin I had just begun to take and it was suggested to me that I cease to take it and see how I was in three weeks, after which time, if it hadn't improved I should visit a doctor.

That night while on the phone to my Mum I happened to mention the strange spots. She expressed concern, pointing out that they likely meant my skin cells were bleeding, and told me to go to A&E. I had a meeting that night, I felt more-or-less fine and I wasn't about to drag my family on a half an hour drive into Dunedin for something so trivial, but to allay her concerns I agreed to visit the doctor the next day.

On Thursday, as promised, I visited my doctor. She quizzed me thoroughly, examined me and took photos of my spots. Then she had a colleague examined me and together they consulted their medical encyclopedias.

They agreed that the most likely scenario was that I had ITP or Idiopathic thrombocytopenic purpura. This seemed to most closely fit my symptoms. They then contacted Dunedin Public Hospital (DPH) and consulted the hematologist and general surgeon there.

ITP is fairly rare (about cases 100 per million people a year) and initially when talking to my doctor the hematologist was very reluctant to concede that I might be suffering from this condition. Instead she seemed convinced that my doctor was miss-diagnosing meningitis (much to my doctor's chagrin). Other than the spots I had no other indicators of meningitis.

Samples of my blood were taken and I was sent home to await my blood results.

At 5pm that afternoon the doctor called. My blood work showed that my platelet count was extremely low. Normal levels should be around 300. I was sitting on 2! I was to go to hospital ASAP.

Hospital

Once at ED I was reassessed and re-examined. The placement of petechiae and a number of bruises of unknown origin, mostly of my arms and legs, were noted on a chart. I'd had some spotting on a tissue when blowing my nose and bleeding of the gums when brushing my teeth and these symptoms were noted too.

A lure was put in my arm and more bloods were taken. My family history of auto-immune issues were recorded; both my grandfathers had diabetes, coeliac disease, autoimmune liver disease and autoimmune hemolytic anemia (AIHA) and acute ITP.

At about 8pm I was admitted to the Haematology and Oncology ward on the 8th floor. I was given an infusion of antibodies IVIP (a blood product). I was also started on 80mg of Prednisone (a steroid and commonly used therapy for ITP) and because there is the risk of stomach ulcers and osteoporosis when taking this drug over an extended period of time, I was also put on medications to protect my stomach and my bones.

I was also put on a "soft foods" only diet, in case anything I ate scratched my mouth, throat or gut and cased it to bleed, and wasn't allowed to drink anything too hot or two cold. I was give little sponges on a stick (often used for mouth cares of the elderly) to brush my teeth to stop my gums from bleeding.

As I'd been suffering from headaches an MRI was done of my head to rule out any aneurisms or bleeding in the brain, which is a very real danger when suffering from very low platelet levels. The results were negative.

On Friday bone marrow was taken from my hip to verify ITP.

I was a bit daunted going into this procedure because I'd seen it done once of TV and it looked incredibly painful. My Mum had had this done before. She suggested asking them to increase the dose of "dope" that they give you so you aren't really aware of what's going on, because one dose hadn't been enough for her. When I didn't respond as well as expected to the initial dose they did increase it. And while it was a little uncomfortable, it didn't actually hurt.

The drugs definitely worked to wipe any clear recollection of it from my mind and may recollection of it now is very hazy. My hip was sore for the quite a few days following the procedure, though nothing a good dose of codine couldn't deal with.

The bone marrow results "indicated likely ITP". After the infusion the night before my blood work now showed my platelet levels had increased to 25 and while my doctors were pleased with this jump in my levels they decided to keep me in for observation.

Saturday my platelets had dropped slightly to 21. I was deemed to be out of the critical zone and allowed leave from hospital to visit with family in town, so we took the kids to McD's for a happy meal and play in the playground. There was talk that I might be able to go home the next day.

However on Sunday my platelets had plunged back to 3. I was transfused 1 pool of platelets followed by more Immunoglobulin IVIP therapy (antibodies).

On the Monday I was reviewed by the eye clinic over concerns that spots in my vision were due to bleeding in the eyes. This was determined to be due to severe myopia and not related to ITP.

Following the second infusion of platelets my levels rose to 50!

The following day they had risen to 57 and though they dropped very slightly to 53 on Wednesday, I was deemed to be stable and discharged from hospital.

On the Friday I returned for a CT scan of my chest and abdomen to rule out the ITP being a secondary condition to some other issue. Scans showed no secondary conditions or abnormalities.

For apparently no reason at all, my body had turned on itself and I now had ITP.

What is ITP?

ITP or Idiopathic (or Immune-mediated) thrombocytopenic purpura is a blood disorder where a person has a low platelet count due to an unknown cause.

Idiopathic = they don't know what causes it
Thrombocytopenic = platelet count
Purpura = the petechiae or bloodspots that are a symptom of low platelets.

In most cases (and in my case) the antibodies attack the platelets in the blood and destroy them.

My consultant explained it to me this way:

Your antibodies are your bodies policemen. When the body is attacked by disease or infection the policemen lock on to the invaders and take them down.

Now some people have lazy policemen and so have a low immunity and frequently fall ill.

Other people (like me) have over zealous policemen. They're are a little too enthusiastic and for some unknown reason have given my platelets "enemy" status. And so they are working really hard to purge my body of these so called nasties.

It would be nice if there was some way the little antibody policemen could simply be "retrained" so that they would cease to attack the platelets, but at this stage as far as I'm aware this can't be done.

The problem is, of course, our platelets are very important. We need them for blood clotting without them we bleed a little too freely. This puts those of us with ITP at much higher risk of bleeding to death in a car accident, for example, or a brain aneurism from a blow to the head.

According to Wikipedia,

The mortality rate of chronic ITP patients varies but increases as a function of age. In a study conducted in Great Britain, it was noted that ITP patients experience an approximately 60 percent higher rate of mortality than gender- and age-matched comparison subjects without ITP. This increased risk of death with ITP is largely concentrated in middle-aged and elderly patients. Ninety-six percent of reported ITP-related deaths were patients 45 years or older. No significant difference was noted in the rate of survival between males and females.^[9]

It would be nice if there was some way the little antibody policemen could simply be "retrained" so that they would cease to attack our platelets, but at this stage, as far as I'm aware, this can't be done.

A healthy adult will have platelet levels of 150,000-450,000 per microlitre of blood. Anything below 150 might be considered thomboytopenic. Less than 10,000 (10) is considered critical and in my experience usually involves hospitalisation and therapy to bring up the level of platelets in the blood.

ITP can be brought on by illness or as reaction to something, such as antibiotics. Sometimes, as in my case there seems to be no rhyme or reason for the sudden on set of ITP.

Children who develop ITP often go into remission. This is less common in adults who are more likely to develop chronic ITP. More women seem to develop ITP than men.

To find out more follow these links.

Wikipedia

US Department of Health