ITP and periods?

So sorry if this is TMI, but I'm just freaking out a little and was hoping to get some advice and wisdom from anyone who has dealt with ITP longer than I. So, I haven't had my period for four years, but all of a sudden I started spotting today. Nothing has changed in my life except maybe a little bit of a weight increase due to having to cut back on running from an injury. I was diagnosed with ITP in 2015 and haven't had to deal with periods since that time, so I don't really know if this effects my platelets. So, should I be concerned about bleeding? Sorry if this is a stupid question. Just needed some reassurance and guidance. Thanks!

I'd get it checked out if it were me

I'd certainly visit your hematologist and get some blood work done to see what your counts are. I've never done hormonal birth control (which I am assuming is what you are using to stop your periods), so I can't speak to that, but my periods are absolutely horrible with my ITP. The lower my count, the more of a problem that I have with excessive blood loss.

Knowing your platelet count will help you determine if this is a low count issue or not. If your count is high, then the next step would be to visit your gynecologist. Good luck.

Thanks for the feedback everyone. My hematologist's office was closed today, so I called my primary care physician. The nurses asked the doctor, and told me that I should be fine and not to worry. Does that sound right? I can't help but worry a little because I know counts can go up and down rapidly. Three weeks ago my count was at 80K. I also made an appointment with the gynecologist just to see what's going on. I've never been on birth control. My gynecologist thought my periods had stopped due to me being a runner. He ran some other tests and MRIs, which all came back normal. So, it's just weird that it came back all of a sudden and makes me worry it's ITP related. Or maybe I'm worrying too much and my body is just getting back to normal. I'm still learning how to live with this. It's very frustrating and scary sometimes.

nys85 wrote: Thanks for the feedback everyone. My hematologist's office was closed today, so I called my primary care physician. The nurses asked the doctor, and told me that I should be fine and not to worry. Does that sound right? I can't help but worry a little because I know counts can go up and down rapidly. Three weeks ago my count was at 80K. I also made an appointment with the gynecologist just to see what's going on. I've never been on birth control. My gynecologist thought my periods had stopped due to me being a runner. He ran some other tests and MRIs, which all came back normal. So, it's just weird that it came back all of a sudden and makes me worry it's ITP related. Or maybe I'm worrying too much and my body is just getting back to normal. I'm still learning how to live with this. It's very frustrating and scary sometimes.

In general, I would never ask for ITP advice from a primary care physician. I have a hard enough time finding a HEMATOLOGIST who knows what they are talking about when it comes to good ITP treatment advice.

Regardless of all of that, you are mostly going to have to look at yourself and see if you have other symptoms that indicate a low count. Are you having lots of bruising? Any nosebleeds? Any blood blisters in your mouth? Things like that will indicate that you have a particularly low platelet count, and over time you will get a better sense of how your body reacts to a low count. If you don't have any symptoms other than your period starting back up, I definitely wouldn't worry about it. That's really quite something that you had it stop for so long just from running! (Makes me wish I were in the health/condition to run enough and put in enough mileage to make my period stop. Then I'd need less treatment for my ITP hahaha)

For your own peace of mind, you might want to go for blood work whenever your hematologist's office opens back up. A last count of 80K is pretty darn good. Hopefully you are still at such high levels and won't need any treatment for the ITP. Good luck.

That's good info. Fortunately, I haven't had any of the other symptoms you mentioned. Yeah, definitely agree with not fully trusting a primary care doctor. I was a little uncomfortable taking their advice, because I sort of got the sense that they didn't know what to tell me. I feel like my hematologist is pretty knowledgeable with ITP, but yeah it has taken awhile to find someone who knows what they're talking about and understands what I'm going through. Still, it seems like there are still so many unanswered questions about ITP, which is unsettling for a control freak like myself, lol!

I'll ride this out over the weekend and try not to worry about it too much before I can get a count done. It always bothers me when something like this comes up over the weekend and having to wait for reassurance. I'd be interested to see how much of a difference, if any, this makes in my counts.

It would have been nice if your PCP would have at least ordered a CBC. Then you would have known whether to contact your Hemo or your GYN. That's where you need to start...get a count.

Quick update; I got good news that my platelet count was 110, so it looks like this hasn't affected my counts negatively. I've been fluctuating from 70-100 for awhile now. I'm wondering if this stays stable or does it always get worse over time? I'm fortunate that I have never needed to start any treatments, but I'm always anticipating the worst case scenario when I go for counts.

ITP does not necessarily get worse over time. A cold, vaccine or antibiotic could knock your counts down but they could easily rebound. There is a good chance that you will stay stable, but of course only time will tell.