Anybody experience sudden high counts

Hi everyone, so as you know I have had ITP for nearly a year now, diagnosed in February 2014.

I had IVIG on the 23rd December and platelets rose to 209, thereafter they started to come down, so on my 5th week of IVIG I had a count of 69. I go every Wednesday for my routine blood check, so the following Wednesday I went and the Haemotologist asked me if I was on anything, or taking something, to which I replied no. My count was 194, so she said they would do a re-count, it rose to 199. This week I went on Monday and counts are 235. ????? She has not seen this before and doesnt know why, she suggested perhaps an infection or something. However she did say most people their platelets decrease with infection, and surely it wouldnt go from 69 - 235 in such a short time.

The problem was on the Tuesday before I went, I had a very bad pain in my left side, upper left side near my ribs, and my stomach was not right at all, so I went to the Doctor aswell, they did a urine test and put me on antibiotics for 5 days just incase as there was white cells in the urine, however I have had further blood tests, for nearly everything and all fine, no infection anywhere, I went back today to the GP to check on the stomach as its not sore but a dull ache, sometimes when I eat certain foods I get a pain and then diarrhea.

Everysince I was on steroids my stomach has been playing up, well ever since I started with ITP to be honest, and they checked a sample about 3 times as I had a lot of diarrhea for about 5 weeks before on Steroids.

So my question is, whats going on? The Haematologist doesnt know what is going on, and the only thing different I have done is take Vit C - 1000mg a day now.

Not sure if the stomach and the increased platelets are related. I know I have had a lot of stress with the ITP during 2014 and wonder if this has now started me off with having IBS not sure.

Has anyone experienced sudden increase in counts out of the blue?

Fiona:

Yes, high counts for no reason do happen. It can be an indication of the spontaneous remissions that we talk about, or a temporary increase due to the illness or antibiotics. Some people do have an increase in counts when they are sick. It's not typical and most of the time counts do go down, but many people have reported higher counts after being ill.

As for the diarrhea, it could be almost anything. Vitamin C in large doses can cause diarrhea, so maybe it's that? I can't even drink orange juice or I have to run to the bathroom every five minutes. Maybe try cutting that dose back for a while and see if it helps.

In the meantime, enjoy the counts! I hope it continues.

H Pylori???? Can cause low platelets.

"The problem was on the Tuesday before I went..." Before which time you went? Your chronology is not clear. Did the antibiotics precede the jump in platelets? Which antibiotics? If so H pylori is a possibility.

World J Gastroenterol. 2014 Jan 21;20(3):714-23. doi: 10.3748/wjg.v20.i3.714.
Helicobacter pylori-associated immune thrombocytopenia: clinical features and pathogenic mechanisms.
Kuwana M1.
Author information
Abstract
Immune thrombocytopenia (ITP) is an autoimmune disease mediated by anti-platelet autoantibodies. There is growing evidence that the eradication of Helicobacter pylori (H. pylori) effectively increases platelet count in a considerable proportion of ITP patients infected with this bacterium. In the majority of ITP patients responding to H. pylori eradication therapy, the anti-platelet autoantibody response is completely resolved with no relapse for more than 7 years, indicating that the disease is cured. Therefore, adult patients with suspected ITP should be examined for H. pylori infection, and eradication therapy is recommended if the infection is present. Notably, however, the efficacy of H. pylori eradication therapy in ITP patients varies widely among countries, with a higher response rate in Japan compared with the United States and European countries other than Italy. The pathogenesis of H. pylori-associated ITP is still uncertain, although the mechanisms are known to involve multiple factors. H. pylori may modulate the Fcγ-receptor balance of monocytes/macrophages in favor of activating Fcγ receptors, and H. pylori components may mimic the molecular makeup of platelet antigens. Further studies of the pathogenic process of H. pylori-associated ITP may be useful for the development of new therapeutic strategies for ITP.
www.ncbi.nlm.nih.gov/pubmed/24574745

Hi Rob, no I had antibiotics after my first increase, so count was 194 then went onto Antibiotics and then count went to 235.

There is no infection or anything they can find.

Sandi, no I had a dodgey stomach when I started ITP and Steroids, and had diarrhea then aswell, so VIT C dont think did it.

I don't know, Fiona. Maybe it's something you're eating that you have an intolerance to. I have been having problems eating Greek Yogurt lately and it took me months to figure out. I never thought yogurt could cause the severe stomach problems that I've had and I can't find a thing online to back it up. Whenever I stop eating the yogurt, it all goes away. Me, thinking it had to be a coincidence, kept eating it again because I like it so much. I've eaten yogurt before over the years but only sporadically. Eating it every day is what causes the problems.

It could also be any number of things: IBS, Ulcerative Colitis, Chrones, Celiacs....if it keeps up, you'll probably have to see a Gastroenterologist.

Thanks Sandi, ( how funny at the moment greek yoghurt seems to settle my stomach) - just hope high counts and dodgey stomach are not linked!! Was reading the statistics of high counts in ITP suddenly and well - lets hope this lasts!!!

Need some good news for a change its been a struggle last year.

I was diagnosed with diverticulitus a couple of years ago after a trip to the ER with severe stomach pains. Now there's a lot of foods that I like that I'm not allowed to eat.

My count which has been around 80 for a long time went up to 121 in November when I had a cold. It came back down and then when a different virus struck it went up to 131. So maybe you have a virus. They won't be testing for that, just bacteria.

Hi everyone, thought I would update since my last post.

So its been almost been 4 weeks and my counts are still in the 200's. Still not sure if I can celebrate it, as I am still nervous things could suddenly change.

I had a scan of the spleen etc and all is fine, as is all other organs, so they have referred me to a gastro doc just to check as I still get a dull ache in the abdomen, and certain foods etc set my stomach off, so they not sure.

There has been no indication in the bloods of anything so we shall see. They are not sure why its suddenly gone from 69 right up to the 200's and stayed there....

Lets hope fingers crossed my counts remain normal, its just nice to be symptom free for 4 weeks and free of treatment, so at the moment I am enjoying the ride and very grateful!!

Fiona:

That is just great! I'm happy for you! I hope it continues too but if not, you will handle it. We've had some other people who have had spontaneous remissions that did last. Maybe you will be one of them. Keep us posted!

Thanks Sandi, the hospital just called me now as I had a blood test yesterday, and they said see you in 3 weeks time.... I said are you sure???? Very nervous about being left alone for 3 weeks!!! But I guess fingers x .....

3 weeks is fine. You can always go in if you see symptoms. Sometimes it's good to just LET IT GO and take a break! :laugh:

3 weeks was ok count still up its now 197, so we wait and see what the next count is. I have been booked to see a gastroentorologist now as stomach issues are still persistant. Quick question does anyone know could steroids cause a problem with the stomach - I was on high dosage and obviously tappered down but on them for more or less just about 11 months. The stomach pains are not indigestion or burning pains, and I thought steroids could cause ulcers etc, but this is a constant side pain that never goes.
What next......

Steroids can cause ulcers and hopefully the Gastro can rule that out. Have you taken any acid reducers?

I've had a problem with stomach pain for the past nine months and finally discovered it was due to rice cakes. How weird is that? I was eating them every day and it caused major pain and constipation. I thought something serious was wrong. Maybe it's a food intolerance or something. Anyway, you're seeing the right person! Let me know!

Hi Sandy yes will let you know, I have a Haematologist appointment next week as well so will ask him about stomach as well - as my counts went up suddenly and stayed up when I started having these problems - weird.
I took the usual tablets for stomach and calcium when I took Steroids so would have thought maybe my stomach would be protected. When on the steroids I had diarrhoea for about 5 weeks but never pains.

Trying to eliminate some foods as sometimes the foods I eat dont agree with my stomach and it churns like mad, and some foods cause diarrhoea - But other days the same foods are ok.... I was reading up about IBS as I have had a year full of anxiety with ITP and you know how I get so anxious, so wondering if its that, and then of course my mind goes all over the show and I google - and think horrid horrid things.... note to self - musnt google!

Rice cakes - mmmmm, maybe too much fibre in them....

PS - what are acid reducers should I try and take some now?

There are many acid reducers to choose from. I don't know which is best. I take Acifex because it's the only one that my insurance would pay for. That's a question for your doctor.

Prednisone can cause ulcers, but usually not after one or two rounds. I've been taking them for 17 years and although I have awful reflux, no ulcer yet.

See what the doctor says and try not to think the worst.

I'm taking Ranitidine and it really suits me.

So had another blood test last week counts are 220. So he said come back in 6 weeks time for another test.
I saw the gastro doctor aswell 2 days after, he cannot really explain my stomach pain and bowl changes, but they are now testing for inflammation incase, (just a sample test) then he will see based on that if I need further investigations. At this stage he points it to IBS.

So my question is in October (when I was in the middle of my ITP battle), I gave up my anti-depressants (perhaps not the wisest thing to do during that time of trouble), I did the gradual reduction so it was all done properly, and then in December I finished Steroids completely tappering all done. My platelets then shot up in January for no apparent reason - they still dont know.

I have been battling ever since giving up anti depressants and perhaps coupled with no steroids as well, battling, and it should be a worry free time for me now, but its the uncertainty of whats happening with my stomach and is that related to platelets or not.... and there are some days I just cant really cope too well. So I am thinking perhaps now is not the time and go back on anti depressants - surely they will not affect platlets, and thats the reason I dont want to go back onto them, I am so scared to do anything to crash my platlets again. ( I was on anti depressants for over 10 years, 10 mg a day)

My Haematologist suggested when I was been treated for ITP that I try and give them up, but never said yes there is proof they can cause problems, only some can - if your platlets are low cause bleeding or aggrevate it. But I was on them even when counts of 2.

So.... I guess thats the question....

Fiona:

Are you asking if it's ok to go back on the anti-depressants? If so, no one can answer that for you. It's unlikely that they triggered ITP since you were on them for so long without a problem, but I can't say for sure. Our bodies change over time. I could tell you yes, it would be fine but if you have a platelet drop a month or two later, coincidentally or not, then what?

I can tell you that many people take anti-depressants successfully with ITP. I did. I took myself off of them though because I realized that I always felt like I didn't care. I didn't care about the bad things, but I also didn't care about the good things and I didn't like that. I can't imagine how hard it would have been to go off of them after 10 years. Withdrawal can be hard.

I think a therapist might be helpful. That's a good non-drug way to go. Meditation might also help. There are things you can do to help with coping. Take that vacation with your Mom!

Thought I would update on my count. I had another blood test last week and its 203. ( all other bloods are good) So still up there. (higher counts since January)

I have also had a test for inflammation in the bowel(as they thought my abdominal pains and stomach issues were caused by inflammation - so they wanted to rule that out) - that came back negative, so they have now decided that perhaps its down to IBS, and as I was on anti-depressants (recently came off them) for many years it masked the IBS. (and the Gastro Doctors believes that all the stress from the ITP might have exasperated the issue.

So I am now trying hard to let it go and live in the moment and try and not worry - if and when ITP comes back. And I guess I need to stop driving myself nuts and thinking that something else is wrong and its causing higher counts - (somedays easier said than done - but I am trying hard)

With that said, I have now booked a loooong overdue couple of days away, my first trip without steroids and higher counts! So will be heading to Paris for a few days...

So feeling very grateful!!

Good for you, Fiona! Have a great time and try not to worry!