Newly Diagnosed and Advice Sought!

Hi there, I was "diagnosed" on April 28th with ITP in the ER with a platelet count of 16. Had an IV dose of IVIG and started on prednisone. My symptoms had all come on within a few weeks- tonnes of huge bruising, nosebleeds that lasted hours, heavy period etc... Since the IVIG and prednisone my platelets had gone up to 211 and then last check was at 151. I had blood drawn yesterday but had not heard back the results. My concerns now however is that even once my platelets "normalized" during that week there I continued to have long frequent nosebleeds, got an early period (not too heavy but not light) and now today I am seeing large fresh purplish bruises. How concerned should I be with "symptoms" with it being newly diagnosed or treating- should I just expect these things? Did others have symptoms persist even after platelet count came up?

Secondly, I did see the hematologist last week for the first time and she is doing a bunch of diagnostics to ensure ITP. One of which includes a bone marrow biopsy which I am to go for on Thursday of this week. Is it safe to have a bone marrow when then platelets are still low at this this point (or I would presume they are if I am having these bleeding issues)? (I am only 35 years old but have a previous history of thyroid cancer treated with radiation which is why she wants the bone marrow biopsy to rule out anything else, I have also been having "issues" of unexpected weight loss, swollen lymph nodes and night sweats with no real "reason" for almost a year now prior to this platelet issue).

Thanks for any advice and I did try read through old posts so as not to ask questions already answered! Reading through these posts as a guest was amazing at calming my initial fears when I found out about ITP as I saw it wasn't as "scary" as it sounded in the ER!!! So glad to have found this board and appreciate any advice or personal experiences that might give me more insight.

Hi, to answer your easy question.. you can have a bone marrow biopsy at any count. I have had two, one with a count of two and one with a count of eight and with no remarkable bleeding or bruising. The biopsy will rule out other things but it seems that they are pretty sure that it's ITP. They can tell that by looking at the blood film under the microscope to see that all platelets are large and new. That indicates ITP.

I also have had cancer in the past which the GP thought might have recurred when he saw the bruising, but it turned out to be 'just' ITP. Good luck.

ER's tend to panic at low counts because they are not all that familiar with ITP. I was once at the ER for an unrelated issue and mentioned that my counts had been 3k the week before. The ER doctor didn't believe me. He said I would have been in the hospital if that were true. They did a CBC and since I started a low dose of Prednisone a few days before, my count was 44k. He came back and said "See? Your counts are not that low". Yeah, ok. I didn't bother to argue.

It's not that ITP isn't serious, but it can usually be controlled which lessens the danger greatly. You shouldn't be having those symptoms with counts over 100k; most people don't have those symptoms until under 20k. Since you are having them, I'd wonder if the count has dropped. Hopefully, the results will come back okay!

It's good that your doctor is doing the bone marrow since you have other symptoms such as night sweats, weight loss and swollen lymph nodes. It would be good to also have your thyroid checked if you haven't done that already.

Good luck with the biopsy - that too is not as scary as it sounds! Waiting for the results was the hard part for me.

This site has been a lifesaver for me! After reading your post I thought check your thyroid levels as sandi mentioned. I had those symptoms before I was diagnosed with grave's disease. However, I'm assuming your thyroid has been removed? Are your thyroid meds at the correct doseages? However, I did lose a lot of weight before I was diagnosed with itp as well.

As far as bone marrow biopsy....was not as bad as everyone says. Actually when I had back spasms that was a lot worse. It will give you good diagnostic information.

Good luck with your appointment!

Thank you so much for your responses! Sure helps me feel better going to bone marrow appointment tomorrow!!! I am relieved to be getting it done though admitably much more nervous then I expected! Glad to hear it isn't as bad as might expect and definitely glad it seems right to do it!

I do have my thyroid removed and am kept on high doses keeping me hyperthyroid to prevent recurrence so when nothing was "showing" for the weight loss, nodes etc we kinda assumed that. May be all that in the end but will be good to be more clear.

Still unsure if platelets have dropped or why the brushing/bleeding. Have not yet heard back Mondays count yet so figured no point in going today if Dr not looking anyways! Do you find it hard to get your results back? Perhaps it is just confusing in this "acute/new" phase where GP wants hematology to do it and yet hematology not really ready to follow yet? Not sure who to ask or when to worry about symptoms. I guess just go back to er if get worse enough?

Thanks again for your time and responses!

I always got my results two minutes after they drew the blood. My doctors office had an analyzer right there in the draw room and they would do the count while I sat there, then give me the CBC printout. You do have every right to call and ask for your count, so if you want to know, call them.

The Hematologist should be giving you directions as far as who to call and when to call. Yes, if you are concerned you can go to the ER, but you can also call and speak to a nurse at the Hemo's office. It's confusing when you are new. You seem pretty calm though so good for you!

Have you had a second opinion with an Endo? Being hyperthyroid can cause so many problems....doesn't seem quite right.

Thanks Sandi and I think I will persue the endocrinologist again, I have one sort of but haven't seen him for a year and a half as all was "stable" with my synthroid. But think I'll put a call in requesting an appointment or a referal if needed.

Got a phone message late this morning based in Mondays bloodwork that my platelets were down to 58. Meanwhile had them redrawn for bone marrow biopsy this am and was at 60 so perhaps prednisone holding steady enough? But some confusion then as new bruising and a 45 minute nosebleed again. Not sure why if they are high enough not to need to treat? They conferred with the hematologist who at first before knowing today's number planned ivig after bone marrow biopsy but then once the count came back at 60 said would hold off and wait and see "how low they go" instead. So i guess a little ominous now as not sure even more so when to worry or when to re heck the platelets. At least have a requesiton to test whenever I want, just unsure how frequent to "want" to test...

I have abdomen and pelvic ultrasound tomorrow and might go recheck? Before the weekend?

Any thoughts on why bleeding or bruising so much if not in those low danger zone levels? Glad.to have the bone marrow done now at least!!!

It might be different for everyone as far as safe counts. I have been at 2 with no bleeding, just bruising. I'm glad your bone marrow biopsy is done!

I don't know why you'd have those symptoms at 60k. It is odd. There are some things that can thin the blood or cause platelet function problems, so I'd mention this to your Hematologist and see what he says.

Are you on any anti depressants? My boyfriend is on Zoloft which is an SSRI and he has had many more nosebleeds ( some lasting 30 minutes)

I should mention that he does not have itp

Thanks, I am thinking perhaps the nosebleeds are from sinus and nose irritation as I have some seasonal allergies now... But the hard part is just the non stop nature of them. I was also reluctant to take antihistamines in fear they might alter platelets but have now "gave in" and am taking them. The resident had said they were fine I was just hesitant in case. I also have a few tranexamic acid pills from the er so am trying to use those when it starts and is seeming better... So many things to figure out and wonder about... I am guessing it will get easier with time? Sure hope/so!!!

Hopefully only another few weeks and i can see hematologist again and by then all the tests should be back and I shall know more for sure... Am going to start a list of questions for when I do get to see her again. Will have to ask about endocrine, platelet function and other clotting factors for sure...

This forum sure has some great info and really has helped me feel more confortable with everything and taken some fear away!

While researching my daughter's thyroid problems, I did come across some info about having thyroid cancer and being slightly hyper to avoid recurrence. Sounds like your Endo is doing the right thing. I do have a friend who had thyroid cancer and we've discussed it many times. She never mentioned having to be hyper so I think that's odd.

You'll get the hang of ITP soon enough. You're doing quite well. Many times people have multiple things to manage and sometimes one conflicts with the other. Somehow we all manage to figure it out. You will too.

I don't think my sister is hyperthyroid currently. She is a thyroid cancer survivor. I know it took them a while to get the correct doseage.