Are they doing enough?

So my platelets have been as follows - Dec '10 - 128. Feb '11 - 109. March - '11 - 120. April '11 - 133. June '11 - 118. Now i know they're not dangerously low but its still worrying. I seen a hematologist on 7th july and he said ITP. He said we will keep an eye, im not due back to see him until 26th sept and my gp repeats my bloods every 6 weeks. I feel like they should be doing more to find out if there is an underlying cause, as from what ive read online, theres a million reasons for low platelets. Should they be doing more? Should i be pushing for further investigation?

Forgot to mention i bruise from scratching myself and suffer extreme fatigue, also have infrequent nose bleeds and gums bleed when brushing teeth also suffer increased perspiration and infrequent hot flushes at night.. All of which only experienced since all this started, not sure on the relevance

I wouldn't worry about just the platelet counts, they are pretty good - but with all the other issues - have they done a CBC and checked other blood values, and urine tests, the basic physical to see if there are any signs of something else wrong? And maybe some hormone checks too? The extreme fatigue sounds the most worrying - oh also thyroid check. All easy blood and urine tests.

I think your general doctor would be more helpful than a hema since the blood is looking pretty good - they pretty much only care about the blood.
Erica

Thanks for your reply! My doc does CBC everytime Im there and has never showed anything else abnormal. I was given a hormone check for the hot flushes, clear. My thyroid wad checked coz of tiredness, also clear. They then did further bloods checking RA Factor, ANA and anticardiolipin antibody.. Sorry i dunno what any of that means but again, clear. My physical exams are also always clear but my fatigue has a life of its own these days, some days i can sleep for 16 hours and im shattered after bein up for 1-2 hrs

I agree with Erica. Your counts are good and monitoring is fine for now. You wouldn't want to treat because that would just make you feel worse as most treatments have side effects.

There could be other reasons for the symptoms. Sometimes it can take time to find out if something else is going on. Usually if low platelets are caused by something other than ITP, they can find that pretty quickly just by looking at the CBC and physical symptoms.

Hi Ashley and Kyle,
When they did the thyroid test did the do the T3 and T4 as well, important parts of TFT. If you T3 and T4 aren't right you need to check out why.
I would be worried about the tiredness too.

I really couldn't tell you, doc jus said my thyroid had been checked

Could you ring and ask for a copy of test results?

what is your food intake like? a tip to manage the tiredness is to eat little and regular. small healthy meals of no more than three hours apart.

Just make sure you have plenty of fluid, do not over do it and you will learn what that means. May be 16 hours is too many hours and you need to cut back. I have somewhere between 8 and 9 hours. Wean your body off the 16 hours over night and accept a lunchtime nap?

We are all different and respond different but as the others have said your counts are okay enough for them not to treat. They are doing the normal and that is watching you. Side effects can vary from person.

I have had a bit of an up and down ride this year due to having a different hemo with the last one retiring. Plus I wanted to be out for new year so kind of my own fault. Consultant reckons am steroid reponsive. I reckon the treatment that works in the past has been two days of 60mg of steroids then they start the ivig keeping up the 60mg of steroids then tapering. But what do I know - it is all in my notes and am out of dangerzone though like you beginning to notice the tiredness now that am experienced ITP for most of this year rather than a two week (if that) bout.

The thing is, is not to push yourself. If you get on with the GP do ask them about the tiredness and say you are worried by it - if you are worried that is. And take care with what you are eating. Eat healthily little and often.

all the best. It may be that you are just hot with it being summer?

@ AshleyandKyle, your counts are pretty good.

My last count is 103 & has been hovering close to 100 for the last 2 years.
I have also been checked for SLE, HepC, HIV, thyroid...
I have not been treated & the hematologist see me once in 3 months to check my blood count.
In other words just monitoring, watch & wait mode.

Maybe your hematologist is also taking the same approach as your platelet count is even better.

Rhiannon wrote: what is your food intake like? a tip to manage the tiredness is to eat little and regular. small healthy meals of no more than three hours apart.

Just make sure you have plenty of fluid, do not over do it and you will learn what that means. May be 16 hours is too many hours and you need to cut back. I have somewhere between 8 and 9 hours. Wean your body off the 16 hours over night and accept a lunchtime nap?

We are all different and respond different but as the others have said your counts are okay enough for them not to treat. They are doing the normal and that is watching you. Side effects can vary from person.

I have had a bit of an up and down ride this year due to having a different hemo with the last one retiring. Plus I wanted to be out for new year so kind of my own fault. Consultant reckons am steroid reponsive. I reckon the treatment that works in the past has been two days of 60mg of steroids then they start the ivig keeping up the 60mg of steroids then tapering. But what do I know - it is all in my notes and am out of dangerzone though like you beginning to notice the tiredness now that am experienced ITP for most of this year rather than a two week (if that) bout.

The thing is, is not to push yourself. If you get on with the GP do ask them about the tiredness and say you are worried by it - if you are worried that is. And take care with what you are eating. Eat healthily little and often.

all the best. It may be that you are just hot with it being summer?

I don't have 16 hours of sleep every night as I have a 20 month old, but his dad gets up with him every other day so when I am not up with him I am sleeping from 7/8 at night till 2pm the next day, which also means lunchtime naps are out of the question.

Definitely not just a summer thing, thanks for your response!

Lindy wrote: @ AshleyandKyle, your counts are pretty good.

My last count is 103 & has been hovering close to 100 for the last 2 years.
I have also been checked for SLE, HepC, HIV, thyroid...
I have not been treated & the hematologist see me once in 3 months to check my blood count.
In other words just monitoring, watch & wait mode.

Maybe your hematologist is also taking the same approach as your platelet count is even better.

Thanks for your response also.

It's not so much the counts that worry me because I know they're not dangerous, it's the symptoms along with it and if they are related to my counts, I'd prefer to get treated rather than sleep my life away. LOL

Honestly, I'd look for another reason for the symptoms. You really don't want to treat because the treatments can have nasty side effects that would make you feel worse, especially steroids. It's a can of worms that you don't want to open. No doctor in his right mind would prescribe with your counts; they are nearly normal. There are so many other reasons for fatigue and it can take a while to find it. It could be something as simple as a low Vitamin level...many of us have those.

Are you saying that you sleep from 7 in the evening until 2 the next afternoon? One possibility for excessive sleeping - depression. Could you be depressed?

I can also tell you from experience that too much sleep can cause major grogginess that makes you feel more tired. That can be an endless cycle. I also have problems with fatigue and sleepiness and have many days where I struggle to stay awake all day. I work, so have no choice. I take an oral chemo on the weekend and that also makes me really tired and I won't wake up the next day unless my husband wakes me up. If he doesn't and I sleep too long, I'm shot for the rest of the day.

Hi there. Just thought I'd update you all as you were all kind enough to reply to this thread.

I went back to my GP after reading some of your responses & after my consultant had agreed that my levels were not low enough to be causing such symptoms.

She has taken a blood test to check my Cortisol levels, basically she said, if they are low, I will need to see a specialist - If they are normal they will then look at Chronic Fatigue Syndrome, which, sounds probable as I have all but 1 of the symptoms for CFS.

So now my question is, could my platelets be on the lower side as an effect of CFS (assuming that's what I have) ??

My platelets, my fatigue etc all points toward an autoimmune issue of some kind. I wish this process didn't take so long, but I know that these things have to be done.

Thanks again!

Ahsley - there really is no way to answer that question. Your counts could be lower than normal due to a prior virus, a medication that you took at one point, or it could just be your 'normal'. Some people just have lower than normal counts and that is their trend. Yes, it is going to take some time to dig and you may never find a true answer or it could take years. Good luck and let us know if you find anything.

Thanks for your reply Sandi. After a little googling it seems cfs can affect te platelets as its a suspected autoimmune disease. As a response to your suggestions.. I have not had an infection of any sort for as long as i can remember, i don't and havent been on any meds since this all started and before dec of last year my counts were perfectly normal so i wouldnt say them bein slightly low was normal for me. It would seem i am getting closer to a reason though..