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Newly diagnosed and needing advice!

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2 months 3 weeks ago #73468 by Beth_Perry
Newly diagnosed and needing advice! was created by Beth_Perry
Hi everyone! I'm new to this group and writing to you all from sunny Spain! I was diagnosed with ITP a couple of months ago and for now have been told I don't need any medication or intervention (my latest count is at 70,000). Otherwise, my general health is excellent and day-to-day I have no problems, except for occasionally feeling fatigued or having nausea. I'm lucky enough to have an excellent hematology department in my local hospital and they are not concerned about my levels for now, but sometimes I worry about what the future holds, and would really appreciate any advice about diet, exercise and general lifestyle tips that you guys have found work for you. What can I do to help keep my levels up? What will happen if I get some kind of virus or infection? It's so much new information that I feel a bit overwhelmed so it would be great to have some support from this lovely community!

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2 months 3 weeks ago - 2 months 3 weeks ago #73469 by MelA
Replied by MelA on topic Newly diagnosed and needing advice!
Welcome Beth!   First off I was diagnosed ITP in the spring of 1989 with a count of 11k and dropping - back then the treatments were prednisone or splenectomy and I opted for prednisone.  The future from there?  Well, a couple of months later while on 60mg of pred daily we moved to Tokyo where I had a wonderful hematologist, then to Hong Kong where I knew more than my hematologist :)  It was scary but couldn't pass up the chance of our family moving overseas.  The only thing I stopped doing was skiing - decided that was probably a good idea.  I just live my life really just as I always have - my count is lower than the normal low but a decent - I do ask my hematologist about things, like I was advised not to take a multi-vitamin with E in it, when I had knee replacement and was on a baby aspirin to prevent clots he tested my platelet count every 2 weeks, things like that. Years ago when I got the flu believe it or not my count went up to 401k!   I did read on this site that tomatoes weren't good for us, well ever since then I have craved tomatoes how is that for being nuts!  I have a great hematologist who loves blood and knows a lot about ITP.

I will say good for your hematologist not treating at 70k!!  Sounds like you are in good hands!  How often is he/she recommending that you test?  Of course you are overwhelmed, I'd never heard of a platelet until ITP so there was a mystery about all of this - you will come to terms with this - guess the best advice is read all you can at legit sites and keep positive!

PS - Spain, lucky you!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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2 months 2 weeks ago #73470 by CindyL
Replied by CindyL on topic Newly diagnosed and needing advice!
Hi, Beth, welcome!  One thing to remember is we are all different.  I agree with Mel about your doctor not treating at 70.  Mine didn't treat me unless I was under 30.  The lowest I've been is 7.  I didn't change my diet unless it was something on the no-no list that I didn't like! 
Please keep us updated on how you are doing!
We shouldn't eat tomatoes???  Oh, no!  I love fried tomato sandwiches!  And we eat a lot of pasta with tomato sauce.
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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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2 months 2 weeks ago #73471 by mrsb04
Replied by mrsb04 on topic Newly diagnosed and needing advice!
Hello Beth
Welcome, I agree with Mel and Cindy. 
Absolutely spot on not treating a count of 70.  Over here in the UK nowadays a new patient with a count above 30 is very rarely treated.  A watch and wait approach is employed.
Guideline  for  long term patients  with low counts is to treat with the lowest dose of medication to maintain a count of 30.  
Some people (and some doctors)  tend to get very hung up on counts whereas it is the symptoms ie bleeding that are the problem.
I have tried many medications over the 10 years I have had ITP some have worked ,some haven't and some I refused to  continue taking as the side effects are worse than having ITP. 

I have made no changes to my diet  or my lifestyle other than not drinking Tonic Water as that is known to lower platelet count in some people. Rarely I think but as I am unable to keep my count in double figures without medication I do not touch it, and put orange juice in my gin instead. I eat lots of tomatoes. 

Regarding viruses and infection that will be a wait and see, everyone is different. Bacterial infections have no effect on my count but a virus will usually drop my count quite alarmingly but a 3 day course of high steroids usually brings it back up.  

Fatigue too  is individual. It's a case of pacing oneself and listening to your body, I gave  up worrying about it years ago. I rule my life, my ITP does not. I have to say I rarely notice it  since I  retired and when working on the NHS front line I used to manage 12 hour shifts with a count of 2 without too much of a problem. I have to say I never did 2 consecutive days I always had at least 1 day off between shifts. 

Hopefully  you will maintain your present count. Please let us know how you get on. 
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2 months 2 weeks ago #73474 by Beth_Perry
Replied by Beth_Perry on topic Newly diagnosed and needing advice!
Hi everyone, thank you all so much for your kindness and great advice. It has really helped me to know that I'm not alone, and that you're all out there enjoying your lives despite having ITP! There's been a few points mentioned that I shall answer:

- My hematologist is definitely very good and I'm glad he's done the right thing in not medicating me. He has reiterated that unless I start to show any symptoms like unsual bleeding or bruising, he will not give me any medication. He said if I get below 50 then he might consider it but it will depend on my symptoms and general wellbeing. At the moment I'm only getting tested every three months so he's obviously not overly concerned.
- I know fatigue is a symptom and probably explains my love of naps! Having said that, I do have a very busy job that requires around 10 hours of work a day, so if I'm feeling tired it could well be because of that and in any case, I'm still able to function well so it's not a big problem.
- I had heard about tomatoes being bad for you, living in Spain means that I eat them quite a lot! I might cut them from my diet and let you know if it makes a difference.
- Does anybody know how much of an effect alcohol has on ITP? I haven't really looked into it in much depth and was wondering whether cutting it out would increase my count.

Again, thank you all so much for the advice and for welcoming me to the community! I have my next blood test in April and will let you know how I get on.

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  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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2 months 2 weeks ago #73476 by mrsb04
Replied by mrsb04 on topic Newly diagnosed and needing advice!
Beth
Alcohol has never made a difference to my platelet count. 
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