If you have ITP or a platelet disorder, be cautious with green tea, reishi mushroom, and cordyceps extracts as they may affect blood clotting and the immune system. Green tea extract: May reduce blood clotting ability at high doses and interact with ITP medications. Reishi mushroom: Has antiplatelet effects, which may increase the risk of bruising or bleeding. Cordyceps: May prolong bleeding time and affect immunity. People with ITP should consult a hematologist before using these concentrated extracts to avoid unwanted risks. Among Us

Ah, using radioactive indium 111 to tag platelets and see where they go...

Has your doctor done testing to confirm your spleen is where your platelets are being destroyed? The last time some one suggested that to me was over 20 years ago when I had gestational ITP.  I’ve had chronic ITP for 12 years (without intervention my platelets are in single digits) and recently switched hematologists to one that specializes in immune based blood issues. The amount of information that has been uncovered and amount of medicines that have developed in the past few years is amazing. Have you asked for a second opinion?

I know this is old, but whatever... It could fit someone's situation now. In fact it can take a person 10 years to realize they have cyclic thrombocytopenia, for that matter. 

This is up my alley for the cyclic thrombocytopenia, but I'm male. But yes, periods and cycle are expected to go together often with females and cyclic thrombocytopenia. 

And, don't expect hematologists to know anything regarding any of this. This is what I have found. Diagnosed myself after a year, and couldn't even get the first doctor to respond to the evidence. Second doctor had never heard of cyclic thrombocytopenia, but at least proved that I had it by taking me off of any drugs. Since my cycle performed beautifully on its own. 

My third doctor almost stopped a surgery, even though he should have known my platelets were raising. I was at 400 by the time of the surgery, but it came down to the last day to get the ok. I knew my platelets were fine. 

What's wrong with this picture? When you know what you're doing, you just need a doctor to stay out of the way. You mostly just need the doctor for the blood tests and the drugs. And hopefully keep track of how your liver, etc. is handling the drugs. 

Good to hear from you drbean!  You have one heck of a work schedule, I don’t know how you do it!  I wish there was a way you could cut back on your hours even a little bit, sounds like you need to go stretch out on the sand at Repulse Bay and relax (been a while since we lived in HK so I’m assuming it still is nice).   Your count went up again!  You know what is best for you and that is what you are doing & it is working.  Just be good to yourself!
Melinda

MelA wrote: Hi drbean,  It's good to see you, are you still in Hong Kong?  Your platelets look great - are you feeling
good?

Hi MelA, thank you for your reply.

I am sorry for my late reply.

I am still in Hong Kong and have been extremely busy with work, often working at least 12 hours a day for more than 7 years, including overtime on Saturdays or Sundays and public holiday.


By the time I leave the office each day, I am exhausted. I usually only sleep around five hours before going back to work again.

I am also very worried about reducing the dose of my medical treatment. I feel that one wrong step could undo more than seven years of effort and progress.

Thank you for your understanding.

9 May 26 - 151
9 Jun 26 - 177

The combination of medical treatment starting from 15 June 2026

a. Cyclosporine A - 75 mg daily (am: 50 mg, pm: 25 mg)
b. Azathioprine -  25 mg daily
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

You should consider switching to an oral TPO receptor agonist, particularly avatrombopag. It offers efficacy comparable to romiplostim without weekly injections and has fewer dietary restrictions than eltrombopag.

While you're considering alternatives to Nplate, I would lower the dose, since that is generally what is recommended. In other words, you don't want "normal" platelet counts. That is how the game is played, anyway. 

You are close though. They recommend over 50 and under 200. 

I was diagnosed with ITP approximately 5 years ago. Initial treatment with steroids up to 80 mg of Prednisone provided no relief so my hematologist started me on Rituximab which also had no effect. My count dropped to 6000 so I was hospitalized and received Ivg which temporarily raised my counts. I then started with Plate at 1mcg/kg moving as high as 3 mcg/kg before my counts reached 200,000 plus for three consecutive CBC's. The dosage was reduced to 2 mcg/kg and then eventually 1 mcg/kg where I have been for the last approximate 4 years. My counts fluctuate between 95,000 and 225,000 with weekly injections based on monthly CBC's. 

At this point, I have resigned myself to the fact that I will be on Plate for the rest of my life but I was hoping someone could provide their thoughts regarding their experiences with alternative treatments. The need to have a weekly injection restricts me from traveling and now that I am finally retired I would love to find something to provide me with some flexibility i.e. an oral medication. I would greatly appreciate all information regarding alternatives including side effects.

Thank you for taking the time to respond.

So, got a surprise. My platelets dropped to 358 from 408 in 8 days, so surgery apparently dropped the platelets, since this was supposed to be my peak platelets, in my cycle. I did take Resveratrol last 4 days, though. This article shows that the platelets can drop, also, during/after surgery;

pmc.ncbi.nlm.nih.gov/articles/PMC7042990/#:~:text=Normal%20platelet%20count%20changes%20during,to%20surgical%20hemostasis%20(Figure%201) .

I was afraid of high platelets, so I guess its good news. Being off the danazol may not have been the right guess for my doctor, though. My surgeon actually said it was ok to continue it, but I had to go with the prescribing hematologist, that's the way it goes...

Here's another one Robert stating what you already figured out, about clogged arteries:

pubmed.ncbi.nlm.nih.gov/10613766/

I just grabbed a Resveratrol after reading it. I just had surgery, too, not heart, and I did read also about the natural increase of platelets from surgery. My platelets of course are now upper end before surgery with my cycle of cyclic thrombocytopenia. Doctors told me to stop Danazol (which I've been on for a month), probably due to clotting worry. Of course they don't tell why they guess these things. I asked them weeks ago about this, and they decide last minute. Well, I'm sure its either clotting worry, or slow-healing worry, or both. 

Am worried about seasonal allergies coming back with a week of no danazol, so started taking less trustworthy zyrtec. 

Hi drbean,  It's good to see you, are you still in Hong Kong?  Your platelets look great - are you feeling
good?

My doctor did check my cyclosporine level, but its long time ago, I can't remember when the test did last time.

My platelet count in 2026 are as follows;

12 Feb 26 - 177
28 Mar 26 - 149
9 May 26 - 151

The combination of medical treatment starting from 10 May 2026

a. Cyclosporine A - 75 mg daily (am: 50 mg, pm: 25 mg)
b. Azathioprine -  Odd days:50 mg, Even days: 25 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

My count stayed at 1.2 million for 2 weeks and my haematologist told me to take 1/4 aspirin tablet to bring it down, which it did. Whilst I was on NPlate however and it finally started to have an effect, my platelet count did the roller coaster thing but I was generally still above the upper limit at around 600.
I mentioned this to both my cardio surgeon and my cardiologist but both didn't seem to think that it would have been a factor in my condition.
Interestingly, post-surgery my platelets were recorded as being at 114 on day 3 and 500 on day 6 which apparently is not unusual.
The bypass surgery went very well and apart from fatigue and getting my lungs to fully functional again, it wasn't that painful. I was on some pain killers whilst in ICU for 2 days and than some Panadol for the next 4 days while in the wards. I then went home and didn't require anything which was a pleasant surprise. Both the surgeon and cardiologist were very happy with my recovery at just 3 weeks post surgery even though it will still take many months to be fully recovered.

Robert, when your platelet count peaked at 1.2 million on NPlate, do you remember how long it stayed elevated before it was brought back down? I’m curious whether your cardiologist considered that period of extreme thrombocytosis as a possible contributor to the plaque burden or clotting risk later on.

Hi, my kid also has ITP. He is 13 now, almost 14, and I know it's a tough situation, but you got this. Many treatments let you continue some activities, and you are most likely to reach remission. I hope you get better soon and don't give up. Sending a hug from afar, and God bless you. 

Itpjourney wrote: Hello Everyone! Sure its going to take a while before there is anyone here, since personally, I didn't receive an email that the forum can be written on now. Just happened to look. 

Well, a lot has happened personally for me!

Back in October 2025, I was having another dip in platelets. I noticed at the time that I had 9 cycles thus far Slope Game 2 , going from way under 10 to over 500, and often enough blood tests to see that the cycles may be about 39 days long. That unbelievably consistent cycle was the key for me.

So, my hematologist was telling me that I should get a platelet transfusion. I commented that I, honestly, had been thinking I might have CTP, cyclic thrombocytopenia. His only answer was that it is ITP and my choice of treatment would be Rituximab or Promacta. So obviously, he didn't see it as cyclic, but he never said why. I presume that it was because he was convinced that my papaya leaf extract self-treatment was raising it, but I had told him that the papaya leaf extract was powerless to stop the drop.

So his reaction or lack of one, forced me to a second hematologist, who had never heard of CTP. So, this hematologist gave me the benefit of the doubt and "forced" me to go through a cycle with no medication. I freaked out when the platelets got low next to Thanksgiving, but he held me to the no medication. I survived and that cycle, which went from under 10 to close to 300, was pretty much the proof that it was CTP, but things ended shortly after with that hematologist, due to insurance reasons, so I did not get a lot of words from him or a new diagnosis, or any suggestion of medication.

So Dr. number 3 now. He did have one mentor that had a patient that "maybe" had CTP. So we've gone through another medication-free cycle, from 1 or less, to 420. He wasn't up on medication with my first visit. I have suggested cyclosporine A potentially, but I have to get together at some point to discuss. He does say that the platelet trend is definitely cyclical. Didn't quite say I have CTP, but close enough. Seems, to be a hesitancy to put it into the words, "YOU Have CTP". 

So there you are. My suggestions of papaya leaf extract were at least somewhat wrong, and I'm sorry about that!  I haven't had any PLE since November 10th. It may have been pushing the count higher along with the cycle of thrombopoietin (TPO), but in this case, it may have not been "helping". (It would still be nice to know if PLE keeps me out of the dip somewhat, but its impossible to know that, since the numbers shoot up with the natural TPO cycling). 

So, one thing is more sure, I have a handle on what the cycle is doing. The dip is even more scary though. Last dip, I spent 8 days under 10, down to a count of 1 or less, and am feeling like I have to be careful with it more since I know I'm not taking medication. Still have avoided the hospital, since my symptoms are actually quite minimal.

Of course next thing, since the platelets are going so low, is trying a medication. That will be its own challenge, but many of you know how that goes. 

I don't know if I should start a new forum identity, or just point out every time that I have CTP and not ITP... Of course I can't just say CTP, I would have to say Cyclic Thrombocytopenia. ITP patients can go years before realizing that they have CTP. It is extremely rare, but it still needs to be known its a possibility, when you see fluctuations. Especially fluctuations when not taking TPO drugs. 

Thanks for sharing this, the clear cycle pattern you tracked is really valuable. It might help to keep a detailed log of counts and symptoms to support a formal CTP diagnosis and guide treatment decisions.

I was told about a doctor that was like the best they've known. And I ended up needing a new doctor because of an insurance change, so there you go. That was 3 months ago. So, he comes off as very reasonable and takes his time with you. But the reality has been more waiting around. And every 39 days I have another scary dip in my platelets while we're wasting time.

So, we finally get to second appointment, since nothing can get done without an appointment, perish the thought. So he's telling me his plans. Well, I'm glad to finally try cyclosporine, so I go with what he says. I see flaws in dosage and he's talking about trough tests, which I had not heard of, so yeah, in some ways it seemed like he knew what he was doing, so I didn't say anything. Unfortunately, nothing was laid out for other possible occurrences, such as platelets dropping quicker than usual. Who could predict, honestly? Anyway, when results are not right, he is adjusting off of the trough tests. Seemingly that's the only formula he cares about.

So he is willing to adjust, but not when it comes to me wanting to adjust. Its all chiseled in stone apparently in last appointment, and requires another discussion to go against anything he is doing. Any comments are ignored, and when I try to figure out what language he will respond to, again he says, wait for next appointment. 

This relationship is always going to be frustrating to me... Am I asking too much? Do doctors always waste time by not listening to the patient without another consuming appointment? And even when there is a new appointment, is he going to be all powerful? 

Cyclic thrombocytopenia is a very rare disorder. I feel I know my disorder better than someone else does. I have the time to do the math. The doctor is not a cyclic thrombocytopenia doctor. He is just guessing along with anyone. And he is not spending much time on this guessing game. 

Should I find someone willing to change things the way I want to change things after a note on a portal? Or does this doctor not exist?

I don't know if this "formality" is insurance related, protocol related, or doctor selfishness related, but its pretty insane to me that time is not considered for a platelet bleeding disorder, when things could theoretically happen very quickly. "Oh, can't do that" with no good excuse why "can't do that". "What do you want me to do, prescribe without an appointment?" Is that so crazy? The doctor and I both knew we were going to go with cyclosporine, but no, had to wait for appointment. Insane! Must have to do with money, somehow. Doctor wants appointments... Flawed system? Its never going to work efficiently at this rate. 

Is a tele-doctor actually the answer for me? No idea.

So, what I thought of as cycle shortening, was actually platelets dropping faster. So the opposite of good. I stopped the cyclosporine, but going against doctor, doesn't seem to make doctor happy. So yes, a forced second opinion could occur.

So drbean, has your doctor ever monitored your cyclosporine level? Mine has done the trough test, 12 hours after last dose. But it comes back low. I, personally would rather see the 2 or 3 hour after dose test, known as peak test. My doctor doesn't like this test for some reason. But it would tell what's going on better, I think. Well, simply, I think, the trough test only, could make you overdose, and the peak test only, could make you under-dose at the trough. I don't want to overdose, so hence me liking the peak test. 

Of course, I think I'm done with cyclosporine anyway, seeing the platelets go down quicker than usual. 

Well, here's the rub. The doctor refuses to do a peak test, controlling... Medical and insurance doesn't like patients to have too much freedom... Can't win when you have your own ideas. I want to adjust doses and they want to adjust doses... They spend 2 minutes thinking, and I'm supposed to go by what they think?

Never mind. Platelets still dropping, so apparently cycle unchanged...

I've actually read that the trough number for cyclosporine, normally taken 12 hours after a dose will have a negligible increase after grapefruit juice. Its the peak that will go up by 185. So, I am asking for a peak test, 2 hours after dose.

The tracks in PolyTrack are often creatively designed with many challenging turns and diverse terrain, providing an experience that is never boring.

Well, I did add grapefruit juice, a little bit cautiously, and my cyclosporine trough number is still low at 44, when doctor was looking for between 200 and 400. But, my CTP cycle seems to be affected, so that is enough for me, at this point. 

No, not ready to get a second opinion, since I have my own opinions. I fixed the once a day dosage, since it was not giving a good number in the cyclosporine trough test. Not sure what the doctor was thinking there, with once a day. And I added grapefruit juice, which admittedly is not exactly recommended. 

Sometimes its best to have a doctor that lets you do what you want. If you feel you have a handle on your particular case, then that is what you want.

And getting results, I think. My cycle seems to be getting (markedly) shorter, which doesn't happen. Like, my big drop is turning to the platelet raise phase quicker, it seems. Will know more very soon. 

I did read recently that azathioprine is safer than cyclosporine, but otherwise... Cyclosporine is what I've been asking for, for more than four months, which included 2 other doctors previous to this one. 

My lymph % is 24. Yours is low, like you say, because of the azathioprine. I see my white blood cells have gone down due to  cyclosporine's immuno-suppression.

Unfortunately, Sandi has been MIA for a few years now.  She is sadly missed.
Hal hasn't been missing as long, but he is missed too.

Itpjourney wrote: Sandi was/is the best responder/thread starter on here. She lists a higher-end-of-normal count of platelets as her last number. She sometimes stated that she felt more comfortable with somewhat lower numbers. Anybody know if she is ok? I know she's been off for 6 years. She is dearly missed.

FNF

I have wondered about her too, because she helped a lot of people here and always explained things clearly. I have not seen any recent updates either, so I hope she is doing well and that someone who stayed in touch might be able to share news.

I am very sorry you're going through this. This is big news, though!

This article says Platelet-to-Lymphocyte Ratio should be more like 106 than 141. Of course it could be much higher than 141. Mine goes higher cyclically, for sure. Since I have relatively low absolute lymphocytes. Good to know. Thank you for the heads up. I guess there's more to worry about... 

Maybe that's why Nplate says not to go over 200, I suppose depending on lymphocyte values. Who knew? Can we raise lymphocytes while we're at it?

pmc.ncbi.nlm.nih.gov/articles/PMC5336865/

I haven't posted for many years now as my ITP experience ended some 12 years ago.
A brief history before I get to my query.
I was a 54 year old male when I first developed ITP in January 2014 and ended up being a severe refractory patient.
I was given Prednisone, IVIG, Cyclosporine, Dapsone, Rituximab, Dexmethasone and Romiplostim (NPlate) before miraculously my platelet count returned to normal in December 2014. During this time my lowest count was 0 and on NPlate I did the roller coaster above the normal range and peaked at 1.2 million for a couple of weeks.
During this time and occasionally since when getting blood tests, I have had to get them redone in citrate as my platelets were clumped.
My query is, does anyone have any knowledge or experience if ITP can cause any plaque build-up in your arteries.
My GP suggested recently during my yearly health checks that I get a calcium score test done as my cholesterol levels have always been just above the standard range (ie 5.5 total with the 'good' reading normal and the 'bad' just above the normal range) but nothing of any real concern.
Anyway my calcium score was 1000 which is in the 90% bracket.
This was a total surprise and so I was sent to a cardiologist for further tests.
I did really well on the stress test treadmill and further blood tests were in the normal range however I had numerous plaque blockages, in particular around my heart.
I cannot understand the reason for this as I am a non-smoker, physically very active, had a good diet, have not had any chest pain or breathlessness and have no family history of heart disease.
I then had a coronary angiogram done with the hope of just having some stents however the situation was worse than expected and I am now scheduled to triple bypass at the end of March.
I had wondered if the treatments I was given could result on plaque build-up but Dr. Google said no (putting aside the very high platelet count when on NPlate).
I then thought I would check to see if ITP itself could result in plaque build-up and the response was that it could especially as the new platelets could be sticky and so I am wondering if ITP could be the culprit.
I apologise for this being a bit long-winded.
Regards Robert