I’d like to share with you my experiences with ITP
I first started noticing unexplained bruising in the summer of 2010, but didn’t really think much of it. I also felt fatigued some of the time, but I put that down to a busy university schedule and exam stress.
I went to the doctors for an unrelated blood test in June of 2011 (I thought I may have had IBS). After 4 consecutive days of blood tests at the doctors with no explanation why I was transferred to Aintree University Hospital with a count of 27,000 and suspected ITP. I am lucky that my count has never been lower than this (since diagnosis that is!).
After 4 hours of blood tests and waiting around in the hospital I was finally diagnosed with ITP (then age 20). I also had a scan on my spleen and thankfully it was not enlarged.
Unfortunately, I had to cancel a holiday I was due to go on the following week because of the unpredictability of ITP and my haematologist did not want to risk me going abroad without being monitored for a while first. This was very disappointing as I had had a tough year and was really looking forward to getting away!
I also had a lot of trouble with the insurance company over the holiday – they refused to refund the money and claimed that I knew I had the condition before I booked the insurance, which was a complete lie. After several complaint letters courtesy of my dad I got near enough the full amount back. Just a warning to those thinking about holiday insurance – I wouldn’t not recommend the Post Office!
Since being diagnosed with ITP I have been going for blood tests at the hospital every 6-8 weeks and my count has been between 30-50,000 with no medication. What I find annoying about the condition is I have no idea why my count goes up, goes down or why it is so low in the first place! I do have one theory though. In about February of 2010 I had a really terrible stomach bug which lasted over 2 weeks. It seems since then I have picked up IBS related symptoms (hence the initial blood test) and the bruising started to appear. I have also become intolerant to maize. I have no idea how they are connected, but it seems a bit of a coincidence. I would have been very interested in taking part in the Food Intolerance Study but unfortunately could not attend!
Many things have come to light since being diagnosed with ITP. For example, in the past after having dental work, I used to bleed longer than ‘normal’ which I know now was because of my ITP. I also had an operation in January of this year, and it is scary to think that my count could have been god knows what whilst undergoing the operation!
I find I am always wondering what my count is, and when I get a new bruise or am fatigued, I worry that it must have gone down. I try not to think about it but it is quite hard not to!
I have tried my best to fundraise for the charity since being diagnosed, not only to raise funds but also to increase awareness. Not one person I know or have met since being diagnosed has ever heard of ITP so I think it is important to get it in the spotlight!
With only recently being diagnosed this is my story so far, any comments or feedback would be great
Written by
Penno90
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Your history is not that different to mine. My itp is credited to a virus picked up whilst working in the far east 20 years ago. I still work abroad even with a count around 10 and never worry about travelling to most places, but I am fortunate that I do not bleed only bruise. I do carry an awareness card with my medical detail. These are available from the support association. If you have not got one, get it organised asap.
You are young and your diagnosis is relatively recent. Providing you do not suffer spontaneous bleeding, try not to let it become a focus of attention and accept that you have the condition but be mindful of the dangers of trauma. Your count will go up and down for no apparant reason, but do not be alarmed. You will in time become aware of your own bodies changes. Accept that you will bruise easily sometimes and feel fatigued and not other times. Providing the bruising is not excessive and you can live with the fatigue, live as near normal a life as possible with the only limitations on dangerous persuits so as to avoid the possibility of trauma.
You will in time, learn to relax and accept this condition and adjust your life automatically. I tend to forget I have it until I cut myself or bruise badly. I now have blood tests every six months or so and I expect in time, you will find the interval between tests is extended. If you can escape from the need for medication, that is a big plus and I hope you will continue to avoid medication unless necassary,
Interesting about maize. I started to eat porridge to help the cholesterol levels and it appears it has helped the platelet count as well - or is that just coincidence and wishful thinking. I will never know.
Finally, we do not live that far apart. If you would like a chat face to face let me know.
Thank you for sharing your ITP story. If you have not already done so, please do send it in to the ITP Support Association for publication in the quarterley Platelet magazine. The next issue is due to be sent out in December and it is already being printed so if you would like to submit your ITP story it could go in the March edition. If you wish to send your story in by email, please feel free to submit it to anthony@itpsuport.org.uk and I can send it on to ITP SA HQ).
A couple of points that spring to mind from reading your story........
1) I agree that it is the randomness, uncertainty and unprdictability that it is so hard to come to terms with regarding ITP. It took me ages to really get my head around the idea that I basically , for the first time in my life, had absolutely no control at all. Once I got used to the idea that in ITP NOTHING IS DEFINITE,
I was able to just get on with things. Now I try to keep my plans as flexible as possible, don`t plan too far ahead and try to enjoy things more, whilst taking things less for granted.
2) Holidays.... my wife and I had to cancel two holidays at the very last moment because my platelet levels just were not safe. They fell 2 days before we were due to travel to levels under 20 and my specialist basically said I could not fly.
Useful information on travel and travel insurance is available via the ITP Support Association and they have issued a helpful leaflet entitled `Holiday Insurance and Travel` . Check the website at itpsupport.org.uk , click on Publications on the left hand side of the HomePage.
3) Dentists.... generally they don`t know anything about ITP (NOR do many GP`s or other health workers like physiotherapists, chiropractors etc). It is absolutely vital that ITP sufferers tell their dentist and GP that they have ITP and advise them about the implications of this.
Again the ITP Support Association provides a leaflet which ITP sufferers can give to their dentist, entitled `Protocol for Dentists`. It is again listed under Publications on the website. For GPs and other health workers the general leaflet `ITP What is it and Where to get help` is a general introduction to what ITP is and should help.
It is also vital to advise your dentist and GP and other health professionals you may deal with, of what medication you have been given and treatments provided for your ITP. Obviously any drugs which you are advised to take by anyone other than your ITP specialist should be referred to the ITP specialist first.
For example the anaesthetic that your dentist might use may clash with the steroid that you are being prescribed for your ITP .... DO NOT JUST ASSUME THE DENTIST OR GP WILL KNOW WHAT TO DO. TALK TO THEM FIRST AND ADVISE THEM ABOUT YOUR ITP AND THE MEDICATIONS YOU ARE AND HAVE BEEN ON !!!!!! Also tell your specialist if and when you nay be making a visit to the dentis, as your specialist should be able to advise you and even your dentist.
4) Worrying... I know exactly what you mean about being constantly concerned/worried that ypur platelet count might be or has fallen. I began to get almost paranoid about the smallest bruise or blemish that I might get. In time that sort of worry does fade. In my experience I have basically come to terms with ITP now . Obviously it is a matter of using common sense, avoiding obvious dangers and keeping an eye out for symptoms like unexplained bruises and fatigue. BUT I HAVE DECIDED THAT ITP WILL NOT CONTROL ME !. IAM ITP POSITIVE NOT POSITIVELY ITP!
5) Medical Emergeny Card/Awareness Card... Worth carrying one of these so that in the event of emergency it is apparent that you have ITP. It also lists any medication that you are on, drugs have been on and any mediactions you should not take.. ie with ITP Aspirin, Ibuprofen etc. It also contact details of your ITP specialist, GP, hospital and person to contact in case of emergency. Worth getting and available via the ITP Support Association.
6) Awareness..... As you say ITP is basically almost unheard of. I certainly had no idea that it existed until I was diagnosed. One useful and quite easy way to spread awareness is to take some leaflets into local hospitals, GPs and even dentists. A copy of the the leaflet..... `ITP, What it is, Where to get help.`.... may be downloaded from the ITP Support Association website by clicking on Leaflets and More on the left hand side of the Home Page and then go to downloads for UK Hospitals. Alternatively if you want some actual glossy leaflets, which would look better if you are taking them to hospitals etc email ITP Support Association HQ on info@itpsupport.org.uk
Anyway, best wishes and thank you for sharing your story.
I feel your pain with allergies though, i got an intolerance to Dairy and Eggs which developed into an allergy and i had to avoid it all completly for 2 years. Now i am back eating dairy again but only small amounts and i still try to avoid eggs as that was the biggest problem.
Take care of yourself and more importantly live life to the full!
Thanks everyone.. I forgot to mention, and it is a strange one, but since cutting the maize out of my diet, my platelet count has increased consistantly and a recent blood test showed a count of 61 Very very interested to see the results of this food intolerance study!!
I am so interested in your story. Im 26, and have been diagnosed with ITP for a few years now. It was discovered by chance when a FBC was done in A&E, with a count of only 1k!! Id had bruising and nose bleeds but as i was otherwise well, GPs had told me i had nothing to worry about!!! I tried steroids (18 months!), then had spleen removed and neither have really had any lasting effect.
I too, have IBS symptoms and food intolerances, and feel sure they are somehow related to the ITP It is hard to say how they are related, and i'm still trying to work out what the intolerances are, but i feel much better since starting on a restricted diet, and feel my platelet count has (very slowly) gone up, even if only a little.
I am very much in favour of staying off the drugs and trying other options, having had little luck with the steroids/surgery in the past. If anyone has any similar stories, I'd love to hear them.
I too was diagnosed with ITP 6 years ago and was paranoid at first but find it has little effect on day to day living now. I am not on any medication and my count has been steady for the last few years between 30 to 40 and my specialist has recently decided not to see me anymore - only telephoning the blood test result once a year. The only time I have needed intervention was when I had to have a tooth extracted in hospital - the side effects of medication given to me was worse than the extraction - in fact I never bled at all but ended up with a strange form of flu for a week.
Sometimes I bruise and my gums bleed but that's all I am aware of. Also now and again I get extremely tired for no reason but it all goes away eventually.
Job stress doesn't help.
Holiday insurance has never been a problem - it just adds on about £10 to the premium if you declare it.
I am just surprised that your doctor has you having blood tests every 6 to 8 weeks when your platelets fluctuate between 30 and 50. My hematologist takes my blood every 6 months and my platelets have been between 30 and 42 for 6 years. If I start bruising a lot or have blood blisters in my mouth, I will consider going in, but I don't if there are just a couple of bruises and just a couple of blood blisters. I know a woman who lives on 5,000 and advises not to be obsessive about ITP. Of course, every ITP patient experiences it differently, but the more you stress over the condition, the worse it becomes. Stress is a huge factor in lowering platelets. I've noticed that in my case. Is Maize a cereal? I've heard of it but not many folks eat it in America. Well, my advice is just to get a lot of massages and other alternative activity that soothes your soul. And join PDSA.org - platelet organization that has a ton of information
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