Confused and stressed out.

Hello all, recently given a possible/probable diagnosis of ITP. I was feeling tired often and my platelet count was 112, 107, and now 101 on my last 3 blood tests over the past year. Have always been told since I was a child that I had thin nose linings (would get nose bleeds) and to not take Aspirin. Plus, my readings as far back as 2007 (the last records I can obtain) have tended to be in the low 100's, so the hemotologist that I went to said either 1. I was born this way and that is that, or 2. I have ITP. His advice was to have follow up blood work every 3 months for 1 year, and to monitor unusual bleeding and/or my shins and urine for blood. That is all he said. I feel so helpless waiting around until Dec for more bloodwork. Other than fatigue and some hip/pelvis pain (on and off) for the past year (for which x-rays showed no arthritis at all) I feel fine. In fact I am active and run 1-2 times per week for anywhere from 2 to 4/5 miles. Any advice here? Don't like feeling so uneasy and helpless, especially if its not even ITP. Thank you for listening. Very gratefully. Kevin

Kevin my advice is to do what the hematologist said.

I was diagnosed with a count of 11k and dropping & when I was in a "remission" my count ran 85k-125k - moved to Tokyo then Hong Kong shortly after diagnosis - only thing I stopped was skiing and that wasn't because of ITP but because I was not good and didn't want to break a bone - when we switched medical the HMO didn't even give me a hematologist but with every blood test the platelets came back with an L [low] by the number - was given a hematologist a couple years ago because the dental specialist wouldn't cut into my gum without an ok from a specialist - I exercise at Curves - I recently stopped taking tap dancing lessons but now am taking clogging [dance] lessons - in June my count was 90k & hematologist didn't order another CBC until January - I was diagnosed in 1989.

Just telling you my story in hopes it will make you feel better and maybe not be so worried. You are doing what you should be doing so don't feel helpless, you have a hematologist so if you have questions call & ask, if you think something is amiss call your hematologist and ask or go in.

Keep us posted!

Thanks Melinda. I rwally appreciate you getting back to me so quickly. I am 39, have 2 young daughters home, and my wife stays home with the girls, so this has had me quite stressed out. My doctor has been making note of my low platelet count for years, but never asked me to have it looked at until now (even though he thought/thinks it is nothing), so a diagnosis was unexpected. How do you go months without getting a new lab report and feel confident that your count will not go to dangerous levels? I think that is the most disturbing part for me is that type of uncertainty. I feel like any day I could wake up to an emergency ER visit.

If the count has been going down slowly over years, isn't it reasonable to think that it would take many more years before a real problem surfaced?

Total neophyte here. Just thinking out loud.

Kevin,

You're right to ask about this. However, there really isn't any difference between a count of 112K and 101K, and triple digits is typically nothing to worry about. Some ITP specialists don't even define 100K as abnormal, just really on the low end of normal (someone has to be there).

Platelet count machines have a "margin of error" of around 5K. I have had the same sample of blood run through twice and had the count be more than 5K different.

On the flip side, if it would put your mind at ease, I don't see any reason to wait 2 months for an appointment you could have now. Did your doctor recommend a hematologist? Please know that many hematologists have not seen a lot of ITP, and if you have the option of going to a University medical center in a major city you're more likely to see a hema who goes to the yearly ASH conference (or has colleagues that do) and who keeps up on recent research developments.

Tamar

No reason to be stressed with 100 counts as long as its not a continued drop. I just reached the 100 count after being on prednisone and my Hemo is now having me ween off now. It looks like you do not even have to take prednisone so I think you're good to go, I was stressed out too but the more reading you do here the better off you are.

Many doctors don't worry about counts over 100k. As Tamar said, it is just the low end of normal and perfectly safe. Most people don't see symptoms until they get under 30k, some even lower than that. There are some people that just have lower than normal counts and it never causes any problems. You could be one of those people.

Most of us were diagnosed with counts much lower than that and needed treatment right away. All you have to do for now is just monitor and go on with your life. If counts do drop, you'll deal with it, but it seems as though you've been quite stable for years. Try not to stress over it, as far as ITP goes, you have the best case scenario. Apparently it's been going on for years. Nothing has changed, the only difference now is that you know about it.

Counts fluctuate constantly and daily labs could show something like 101, 105, 110, 102, 99, 113, etc. That is a stable count. You wouldn't want to see 101, 65, 32, 10.

Thank you everyone for responding. I do feel better psychologically as a result of your replies. I am going to get a second opinion at the end of this month, to see if it is indeed ITP (I now have copies of bloodwork dating back 10 years). Are there any dietary restrictions that I should consider? Any foods/beverages to avoid? I assume alcohol is a no no? Thank you all. God bless.

Alcohol has never made any difference to my count

www.pdsa.org/about-itp/warnings.html
Check this out Kevin. Really the only thing I'm avoiding is Omega 3, aspirin & NSAIDS [others do not avoid them], and Vitamin E.

Will tell you, after reading the foods I actually craved tomatoes, hardly ever ate fresh ones until I read the list Garlic & onions I'd never go without.

I do not avoid alcohol - I don't drink much but I'm not giving it up. I think the rule, and that would be for ITPers or non-ITPers, everything in moderation [except chocolate].

I know that if I feel there's a problem I can get a count done - after a while you kind of ignore the fact you have ITP, it doesn't consume you like it did when diagnosed.

You are going to do well - get your 2nd opinion if that will help your mind rest. But you have to keep us posted ok?! Enjoy your beautiful family, they are a gift!

ITP simply means 'platelet counts consistently under 100k'. Some doctors use the old reference range of 150k. A diagnosis of ITP is usually made when the CBC is fine except for platelets, and the patient has no strange symptoms like fever, weight loss, night sweats, lumps, etc. It never hurts to get a second opinion though if you need peace of mind.

Kevin --

My man! Thanks for checking in! The most important piece of advice I can give you is this:

"Listen, Learn, Ask and Do."

Fear and the unknown is a scary thing. Entire mythologies have been built on the human condition of fear of the unknown.

Look, if you will be able too sleep better with a count, get a count. But NEVER feel hopeless. Never feel like you can not ask for something. That breeds un-needed anxiety on top of what you are feeling.

I have the same things as you...thin nose lining, used to chew ibuprofen like tic tacs, and was told to not eat boogers out of my nose, etc.

Your doctor is 100% right. You have ITP or you are born this way. At ~100, you "have" ITP.

Aside: As my hemo told me once "You can have open heart surgery at 50, stop whining!" Love that man.

If you are born this way you still "have" ITP, except you were born that way. My point?

Stress and Anxiety regarding fear of the unknown will kill you faster than the ITP will.

Breathe. Smile. Laugh. Cry. LIVE....

We now take you back to your regularly scheduled programming....

Tim

KeanOTR2016 wrote: Hello all, recently given a possible/probable diagnosis of ITP. I was feeling tired often and my platelet count was 112, 107, and now 101 on my last 3 blood tests over the past year. Have always been told since I was a child that I had thin nose linings (would get nose bleeds) and to not take Aspirin. Plus, my readings as far back as 2007 (the last records I can obtain) have tended to be in the low 100's, so the hemotologist that I went to said either 1. I was born this way and that is that, or 2. I have ITP. His advice was to have follow up blood work every 3 months for 1 year, and to monitor unusual bleeding and/or my shins and urine for blood. That is all he said. I feel so helpless waiting around until Dec for more bloodwork. Other than fatigue and some hip/pelvis pain (on and off) for the past year (for which x-rays showed no arthritis at all) I feel fine. In fact I am active and run 1-2 times per week for anywhere from 2 to 4/5 miles. Any advice here? Don't like feeling so uneasy and helpless, especially if its not even ITP. Thank you for listening. Very gratefully. Kevin

Kevin

This is written by ITP nurses and not over technical it may help
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Thanks again all. It is great to know their is a community here that I can lean on. Tim, my big question is if I have always hovered around 100 (been between 121 and 97 since 2007 based on lab results I have obtained) is it safe to say I will always be in that range? Or are dips into much lower territory a possibility? What light can you she'd on that for me?

When was everyone diagnosed? At what age if you don't mind me asking.

I was 51 with a count of 13,000 and massive bruising mostly on my arms and hands. Really weird looking and could not be ignored.

Oops. I was 50. I have been as low as 2,000. Your number does not matter, pay attention to your symptoms. ITP is annoying but it is not terminal.

I was just diagnosed at age 56 after a massive bruise on my side. Numbers have been 70s, 50's, 30's. I am fluctuating around 39 right now. Minimal bruising. One small blood blister in my mouth. On prednisone. Started at 60 tapered down to 40 at the moment.

KeanOTR2016 wrote: Thanks again all. It is great to know their is a community here that I can lean on. Tim, my big question is if I have always hovered around 100 (been between 121 and 97 since 2007 based on lab results I have obtained) is it safe to say I will always be in that range? Or are dips into much lower territory a possibility? What light can you she'd on that for me?

No one can promise you anything, but it sure sounds like that is your "normal".

I was 41 when I was diagnosed. Incidental during a routine checkup. Count was 70. Recheck the following week at hematologist was 62. One month later count was 40, and hema started me on prednisone (that was the old days). Lowest count has been 3. Have never even had a nosebleed, just petechia.

I was 45 with a count of 47. I had no idea what a platelet was.

Kevin:

It is common for people without ITP to have platelet drops when they are sick or take certain meds and it's usually temporary. It's possible that you have dropped into the teens, rebounded and never even knew it. It is very likely that your counts will stay stable, but it's also possible that a simple cold could knock counts down. This time you might catch it because you're having counts more often. If that happens, it's nothing to be afraid of. You'll deal with it and life will go on. For most people, ITP is just an inconvenience. It can be more difficult for others who have chronically low counts, but you are doing just fine right now.

No one can tell you what the future holds, but that is true for everyone in the world.

I was diagnosed in my mid-thirties (1998). I'd had a bad cold that lasted weeks and didn't feel any better two months later. I went to see my GP and labs showed a count of 50k. I was sent to a Hemo and within weeks, my count was 8k. That was when I began treatment on and off for 8 years. After that, I went into remission and have been there since...around 2005.

Age 57 with a count of 12. Tripped up in the green house and crashed into the potting bench before landing on the floor. Bruising unbelievable so went to GP who sent bloods off. Sent to local haematology department on receipt of results and admitted immediately.

KeanOTR2016 wrote: When was everyone diagnosed? At what age if you don't mind me asking.

I was 53 in 2015. My count was 8. I had over 50 bruises in varying stages of coming & going. Some very large, some small, from the bottom of my feet to my neck. Bleeding gums, aching sides, extreme fatigue, couldn't concentrate. Also diagnosed with extremely high BP. My count now stays between 30-40.

Younger than I am now - back in 1989.
11k and dropping.
Looked like I had been beaten up in a dark alley with a 2x4.
[couldn't count mine since they were running together ]

Why avoid omega 3. I am on a diet that includes this for the past month and my count has been going down down.

I am new here. I was sixty something and my count was around 50 discovered by chance in routine test. Hemotologist did all the tests, inc. bone marrow and diagonosed me with ITP He told me that you can live a long time with ITP with no problems. I was not treated. My count went down to about 40 and stayed near that dropping into 38 or so sometimes. No symptoms other than increasing fatigue. Lately it has dropped to 24,000 but I think from reading here that a transfusion of platelets probably caused an over reaction. I am awfully tired lately. The transfusion was due to needed heart test after a mild heart attack.

omega-3 fatty acids in fish oil can decrease platelet activity, which may prolong bleeding time if you cut yourself.

For ITP, your immune system is attacking platelet, transfusion will only last short time, and only useful for emergency situation.

As tj1987 wrote, omega-3 fatty acids can reduce platelet aggregation:

www.bloodjournal.org/content/58/5/880.short
The effects of dietary omega 3 fatty acids on platelet composition and function in man: a prospective, controlled study

However, omega-3 fatty acids might be useful in the management of inflammatory and autoimmune diseases:

www.ncbi.nlm.nih.gov/pubmed/12480795
Omega-3 fatty acids in inflammation and autoimmune diseases.

There do not appear to be any studies revealing the net effect of omega-3 fatty acids on ITP:

scholar.google.com/scholar?q=allintitle%3A+omega+3+itp&btnG=&hl=en&as_sdt=0%2C11

Kevin good to hear your story. I know when you have a family depending on you it must be hard not to worry. I've always felt glad that I had ITP instead of something worse. I feel for parents of children with ITP. I would worry so much more if my son had it.

I don't tend to bruise much. I was diagnosed with a count of 6K age 57. I was advised to go to the emergency room. The doctor there looked at me like what are you doing here?! He told me I was fine, gave me 80mg of prednisone and the number for a hematologist then sent me home. I felt very foolish as that little ER visit cost me $2500. I swore I would never over-react to ITP again.

Since then I've had counts of 1K, 2K, 3K and I've always been fine. If my counts would stay above 10K I wouldn't treat. The meds are harsh and many times those with ITP are over-medicated. Just my opinion. Everyone is so different, partly because the immune system can remove platelets in a variety of ways. The B cells might be behaving badly, or T cells or regulator T cells or the bone marrow might not be making enough platelets- or all of the above! Part of having ITP is getting to know your body and trusting yourself. Sounds like your counts are stable, its just a matter of trusting that you'll be okay whatever happens. Good luck and thanks for sharing!

ps. I took Omega 3 gummies with a count of 15K for about 4 days and got bruises all over my arms. All I know is whatever keeps me from bruising was knocked out by Omega 3. I stopped the Omega 3 and bruises cleared in about 48 hours.