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  • Itpjourney
27 May 2026 04:51 - 27 May 2026 05:34
Replied by Itpjourney on topic Can ITP Cause Plaque Build-Up
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...
  • Itpjourney
22 May 2026 12:46 - 22 May 2026 12:48
Replied by Itpjourney on topic Can ITP Cause Plaque Build-Up
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. 
  • MelA
18 May 2026 00:15
Replied by MelA on topic (9 May 2026) My platelet count was 151
Hi drbean,  It's good to see you, are you still in Hong Kong?  Your platelets look great - are you feeling
good?
  • drbean7218
12 May 2026 11:29
Replied by drbean7218 on topic (9 May 2026) My platelet count was 151
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)
  • Robert1959
11 May 2026 19:42
Replied by Robert1959 on topic Can ITP Cause Plaque Build-Up
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.
  • tyrionlannister
11 May 2026 00:40
Replied by tyrionlannister on topic Can ITP Cause Plaque Build-Up
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.
  • JessCortes
07 May 2026 16:45
Replied by JessCortes on topic Someone talk
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. 
  • Sethlarke
07 Apr 2026 04:32 - 09 Apr 2026 00:22
Replied by Sethlarke on topic The Forum's Back!, and I don't have ITP.

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.
  • Itpjourney
02 Apr 2026 10:57 - 02 Apr 2026 13:27
A question on doctors. was created by Itpjourney
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.
  • Itpjourney
01 Apr 2026 18:06 - 01 Apr 2026 18:20
Replied by Itpjourney on topic (9 May 2026) My platelet count was 151
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. 
  • Itpjourney
27 Mar 2026 19:07
Replied by Itpjourney on topic Grapefruit Juice and Cyclosporine
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?
  • Itpjourney
27 Mar 2026 08:53
Replied by Itpjourney on topic (9 May 2026) My platelet count was 151
Never mind. Platelets still dropping, so apparently cycle unchanged...
  • Itpjourney
26 Mar 2026 10:35
Replied by Itpjourney on topic Grapefruit Juice and Cyclosporine
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.
  • tyrionlannister
26 Mar 2026 03:54
Replied by tyrionlannister on topic Red light therapy for ITP
The tracks in PolyTrack are often creatively designed with many challenging turns and diverse terrain, providing an experience that is never boring.
  • Itpjourney
25 Mar 2026 08:18
Replied by Itpjourney on topic Grapefruit Juice and Cyclosporine
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. 
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