Newly Diagnosed / Feeling Overlooked

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!

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

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.

"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.

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.  

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

My sympathies on the the loss of your dog. I noticed petechiae as we were getting ready to go to the vet to say goodbye to one of our elderly cats. He'd awakened me in the wee hours of the morning as he was struggling due to loosing control of his back legs. (He had a heart condition and a clot that would do just this was likely.) We went straight from the vet to the lab for a CBC draw, and those numbers came back with undetectable platelets.

I wonder how quickly you are able to get CBCs after noticing the petechiae. When i have gotten the counts at the beginning of a bout of petechiae the numbers have been 6k and undetectable. Last year, when i didn't have standing lab orders, the counts were much higher, but it was well after the onset of the petechiae .

My initial consult with my hematologist was quite long, but i think i will be seeing a nurse practitioner from here out. My sense from my primary care doctor (who is a director at a "Healthcare Quality Improvement" organization, as well) is that ITP is in some ways routine for the health care system in my area.

Maybe sharing what you need from your appointments and asking what your doctor's purpose for the appointments is might help align expectations?