I looked up that blood center. Wow, I'm amazed! How fortunate you are to have all those excellent choices! Wishing you the best luck in finding the right one for your situation.

Thank you for the response and tips.

Also live near a large metro area (Phila) so decided to try the Blood Disorder Center at one of the “biggies” for a second opinion.

But I don’t plan to totally leave my “open-minded, cooperative, willing-to-learn onco/hema” doctor unless/until it makes sense.

Cheers.

Thanks for the replies.  Bit of an update.  I have been doing immunotherapy since November for the mold allergy and that is going well, seeing some symptomatic improvement at least from exposure when in the garden/greenhouse.  While I'm still in the roundabout of getting shoulder shrugs from doctors, I have mostly dialed in what helps and seems to support both symptomatic and platelet improvement.  I'm still taking omeprazole daily.  I pursued histamine intolerance, tried taking pepcid but unfortunately after a few weeks started getting bouts of queasiness and inability to finish meals so stopped taking and that resolved quickly after.  I also found that my calcium + supplement is important as well, while it doesn't dramatically change things it does "even" things out and I have less ups and downs in energy/fatigue etc, and importantly erectile dysfunction is mostly gone and haven't needed medication in almost 6 months for it. B12 of course.  I take a magnesium supplement once a week, though this is one I'm not sure how much its doing if anything beyond it being good to have, I dialed back how much I was taking and have yet to notice dramatic change.

I looked into DAO supplement for histamine intolerance, but have yet to find one that is third party tested or has proven amounts.  Generally leery of supplements given their lack of regulation and you have no guarantee what you are getting.  I am hoping that as my immunotherapy continues that will lower histamine in general as my body calms down.

GI is still being looked at.  Have a new GI doc and will be doing a colonoscopy later this month.  IBS is something that I think is likely.  Diarrhea is still relatively often though far less regular.

Still no answer from docs, omeprazole shouldn't be improving my platelets or symptoms even though it is the primary reason they have improved.  Maybe will get an answer, maybe not.

The improvement you noticed with omeprazole and fiber, plus your observations around high-histamine foods, definitely seem worth exploring further  Doodle Jump

I miss HAL too. He would be surprised if he found out what I did in these years. Does anyone know where he is?

If you feel that your concerns are not being addressed adequately, seeking a second opinion can provide reassurance or alternative treatment options. It might be helpful to clearly communicate your feelings about the short appointment times and your anxiety. Consider preparing a list of specific questions or concerns for your next visit. ITP can be unpredictable, and fluctuations in platelet counts can occur. It's important to monitor your symptoms and communicate any changes to your healthcare provider.  

quordle

I live in a large metropolitan area with two major university medical schools/teaching hospitals. I've found only one platelet disorders specialist in either system. When I saw him about 7 years ago for advice about how to make my N-Plate work better for me, he was stuck on the outdated view that splenectomy is a "cure" for ITP and insisted I should have one. It was the only treatment he would consider. I refused.

So, I returned to the open-minded, cooperative, willing-to-learn onco/hema I'd seen for 9 years before. He listens to me, takes my preferences into consideration, and never tries to force my hand.

You might be able to locate an ITP specialist (or at least a platelet disorders specialist) by contacting the PDSA organization directly. If you're anywhere near Boston or can travel there, Dr. David Kuter would be one great choice to see.

Am considering switching hematologists and looking for resources to help find a "better" one. So far the only resources I can find are generic "find a doc" tools where nearly "everyone" treats ITP.

I really like my hematologist, for example, when was the last time a doctor called and didn't turf it out to a nurse or NP? But I suspect that she likely sees a small # of ITP patients and focuses more on the oncology side of her "business". Therefore I don't feel she always speaks with great confidence on next steps, full range of treatment options, etc.

So I would like to find someone who sees relatively "many" ITP patients and can therefore speak relatively confidently from experience on various treatment options. I know there aren't many ITPers to begin with and no one can speak 100% confidentially where the immune system is involved.

Bottom line: looking for a hematologist whose sub-specialty is adult ITP/platelet disorders and really "gets it".

Thanks!

 
 

Wow! I would have thought the count would be single figures. 

Nosebleeds for 10 months would seem to be chronic Itp. Then there's CTP, which nobody talks about on here. That is cyclic thrombocytopenia. I guess we can all hope for Itp. CTP has wild platelet fluctuations for no reason.

I think/ wonder about her a lot.  I know I miss her posts.

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.

Here is more on this drug:  pmc.ncbi.nlm.nih.gov/articles/PMC9807464/

Seems like I'm seeing some effects of this drug lowering platelets listed elsewhere... I guess sometimes these factors can be independent, not that I understand why.

   

 

Asking people with fluctuating platelets numbers, do you notice that the monocytes go high when the platelets go high? Mine do. I believe it is showing the immune response, to fight the platelets. I guess the body thinks that high platelets is a disease to fight (or any platelets is a disease to fight, unfortunately). 

I wonder if this (monocytes going up with platelets going up) may not happen when your problem is production. But then, maybe you don't have the wild fluctuations in platelets, so wouldn't be as noticeable for you, anyway.

Can this be a way of determining the actual individual (your own personal) reasons for low platelets, personally wondering... Of course, it would be nice if when the platelets go low, that the lower count of monocytes would leave them alone, but that does not seem to be happening, either. The platelets still do bottom out.

Now here's something of interest. If you fight itp with papaya leaf extract, you get the benefit of fighting diabetes! Maybe having Itp will actually indirectly help me. And look at the toxicity. It would take over 3000 mg PER kg body weight to kill a mouse. That would be like me taking seven 60-capsule bottles at once of the 500 mg pills.

[color=var(--body-link-color)]fikkia.unair.ac.id/en/research/manfaat-daun-pepaya-sebagai-obat-antidiabetes/#:~:text=In%20addition%2C%20the%20active%20substance,activity%20against%20alloxan%2Dinduced%20mice [/color]  .

All about insurance with these drugs I guess. Before thinking of promacta or Nplate, you might want to take a TPO test, from what I've read here... If you have normal TPO, you don't need Promacta or Nplate. I believe then it would be Retuximab or natural like Papaya leaf extract. Not a doctor, but I play one for myself. So far, I'm avoiding any big drug questions, although insurance did have to endure the initial hospital stay unfortunately. Of course, I was blindsided with an ultra-low platelet count before I could research. Now, the only insurance costs are the constant blood tests.

As I've said elsewhere, papaya leaf extract works for me, no doubt. I've been working on a maintenance dose, and its hard to find (meaning that it takes a lot of time to find the right dose--the product is easy to find). It either is too much or not enough. Now, I am trying 4 500mg pills at a time, but only once every 5 days. Will see how that goes...

I said earlier that papaya leaf extract may have let me down, unless my count might have gotten really low. Well, I expect that is what happened, because second "pulse" of papaya leaf extract brought my number from 41 to 465 in one week. It just works, for me. I'm guessing its not the production of platelets that is a problem for me, but who knows. This will keep people out of the hospital, or generally keep people from the other drugs,  if said people are like me. The leaves are still a bit a of a challenge digestively speaking, so not without their problems.

Sorry for wrong conclusion, edit:

I actually have cyclic thrombocytopenia, so my huge increases are just part of the cycle and not papaya leaf extract, unfortunately. Took 9 cycles to understand, and my doctor still didn't get it, even after I pointed it out.

If your hematologist can't see you he could at least order a CBC to check your counts!!!
I find it interesting that you are a nursing student but he treats you differently.
You like him, he's friendly but it doesn't sound like he is taking your concern & anxiety
seriously - that wouldn't sit well with me!  If you are not happy with how he is treating
you (feeling overlooked) then you might want another hematologist, but if you are fine with him then stick with him.

Yes anxiety & stress has been known to bring down platelets of some patients!    I am
so very sorry about the loss of your precious dog!!   

Good luck and do keep us posted on how you are doing.  

The chewable papaya complex is pretty easy to google it seems. It has papaya but not papaya leaf. It has bromelain which is supposed to be more anti-platelet so, that is not so great. But, the results for the original poster sound good. Maybe papaya leaf extract would be a better choice. It would be great to get results without the leaves, though. Anybody else get results from papaya without the leaves?

"I like my hematologist, he is local and very friendly. However, my actual appointments with him only lasted around 10 minutes. I bring up concerns about my anxiety impacting these drops, but nothing comes of it. I am wondering if others have had similar experiences and I should consider a second opinion, or if this may just be the ride that I am in for."

As far as your last paragraph goes, it's good that your doctor is friendly. He is really just going by your numbers. He probably just figures your anxiety is not something that he can do anything about, and he might just think that you are just pointing out your situation, but not actually looking for an answer to it. If he did give an answer, it might be "talk to your primary about it". 

Yes, people do list stress as a wildcard for platelet drop.

This could be informative:  pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/31306-nplate-information

Promacta I see is like Nplate, both helping production of platelets. You could ask for the TPO test.

So, if you had steroids handy, you could avoid the hospital, right? I guess you need steroids handy, for one thing.

Hi there! 

I am new here and also somewhat new to ITP. I was first diagnosed back in August, so going on 7 months now. I was 21 when I was first diagnosed, and am now 22 in my last semester of college.

When I was first diagnosed in early August 2024, I received an invasive dental procedure that gave me asymptomatic strep, which is the believed instigator for all of this at the moment. I noticed petechiae/bruising and after a few days of no improvement, went to the ER. I was at 15,000. I was given a consult with an outpatient hematology Dr. and was started on prednisone and antibiotics. By late August, I was admitted for 4 days following my levels dropping down to 0. I had no infection this time around, but had just lost my dog and was very emotionally vulnerable (always my assumption for the drop).

Following this, I was started on Promacta (Eltrombopag) 25 mg while still weaning off my prednisone. Ultimately it took me 5 months to get off my Prednisone due to headaches and side effects.

I seem to respond very well to steroids in these events and bounce back up to the consistent 300,000s. But when my levels drop they drop fast and sudden. In January 2025 there were more petechiae and bruising with a level of 66,000. In February 2025 I was admitted for a night at 19,000. And as I currently am writing this in March 2025 I have petechiae and am getting ready to pack up and head to the ER since my hematologist cannot see me.

I am currently on Promacta 50mg tablets once per day. 

My current issue is that I am feeling frustrated and overlooked as a patient. I am a nursing student in my very last semester, so I understand how this process works to an extent and I do not expect a permanent 'solution' or something that will work perfectly. I am just wondering if I should seek a second opinion?

I like my hematologist, he is local and very friendly. However, my actual appointments with him only lasted around 10 minutes. I bring up concerns about my anxiety impacting these drops, but nothing comes of it. I am wondering if others have had similar experiences and I should consider a second opinion, or if this may just be the ride that I am in for.

Nice to find a helpful community!

How do you guys cover the costs of drugs like promacta? Nplate? I've been reading up on deductible accumulators (universal co-pay program payments don't count towards your deductible or out-of-pocket-max) and I'm scared I won't be able to afford treatment when I get an insurance plan (I'm on medicaid now). Do insurance plans on the ACA marketplace have deductible accumulator policies?

How much do you spend per year on prescriptions for this condition. 

My daughter was diagnosed in Aug of last year that she has ITP. We were told she has had it since 2020. We have noticed that when her platelets drop a migraine is one of her symptoms. Is this something that happens with others? 

We did talk and he does think it's intriguing. If anyone else is using Samsung Health i'd be happy to share my analysis notes with them once i get the data parsed. (I am trying to determine if there were previous signals correlated or uncorrelated with platelet drops before the watch started reporting to me HRV overnight.)

Hi Judi,
Your idea is plausible but unproven, so consider tracking it with your Samsung watch alongside platelet counts and discussing it with Dr. Kasthuri as a potential early warning tool.

Hi Susie,
You could ask your hematologist if delaying treatment and monitoring your platelet counts is safe instead of starting Dexamethasone.