The Forum's Back!, and I don't have ITP.

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, 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. 

Back to papaya leaf extract, pill twice a day during end of dip, after 3 months of not taking. Just had a pretty big platelet drop (420 to 48 in 11 days), and the cycle of CTP has been proven twice without medication, so won't hurt to try to keep count out of the basement.

Not sure how accurate, but I have given myself projected peaks and projected nadirs (since blood tests have not always been at the right time), and going by these numbers; when I have used papaya leaf extract my peaks have been 10% higher, and my dips (nadirs) have been 100% higher (from 4 to 8, so by my numbers, it does look like papaya leaf extract could be helping with my basement numbers. Of course projections of peaks and valleys, when the blood test is sometimes 10 days from the actual, is going to be suspect.

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.