Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

Not yet diagnosed, but anxious! 11 years 11 months ago #807

  • kb04bp
  • Offline
  • Posts: 4
  • Thank you received: 0
I went to my doctor regarding an extremely heaving period and had blood work done and put on iron supplements. I have had bw twice since then and my platelet count went from 109 to 47 in one month. My Doctor told me he believes I have ITP. I am current waiting for an appt with a hematologist.

Other then feeling very fatigued I feel okay, but I noticed yesterday that my hands and feet have been cold and I sometimes get a funny sensation in them, almost like a tingling. Is this related to ITP in any way?

Please Log in or Create an account to join the conversation.

Re: Not yet diagnosed, but anxious! 11 years 11 months ago #815

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
Hi KB:

Getting the initial diagnosis can make you anxious - it's new and scary. 47 is still a good, safe count for most. If you need to treat at one point, there are quite a few options. It would benefit you to read about the treatments so you are well versed at your doctor appointment - you'll be ahead of the game. ITP is usually manageable and for most, it becomes a pain in the butt that you learn to deal with.

As for the cold, tingly hands and feet, I wouldn't say that is ITP related. Sometimes, along with ITP, other autoimmune issues that can coincide. I'd mention that to your doctor.

Please Log in or Create an account to join the conversation.

Re: Not yet diagnosed, but anxious! 11 years 11 months ago #828

  • CindyL
  • Offline
  • Posts: 1428
  • Karma: 1
  • Thank you received: 191
I was diagnosed with a count of 47 too. I was put on 60mgs of Pred for 10 days. I think it brought my count up, but not for long. Have you had any kind of treatment at all?

Could the cold and tingly feeling be from being anxious? Good luck and let us know what the hematologist has to say.

Please Log in or Create an account to join the conversation.

Re:Not yet diagnosed, but anxious! 11 years 11 months ago #848

  • Kim
  • Offline
  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
  • Posts: 98
  • Thank you received: 0
It is a scary time, but as you learn more about ITP, you'll realize that 47 is a safe count. Information and knowledge will help you be prepared for appointments with your doctor. You'll have a better idea what options are available and be able to discuss them with your doctor.

Cold hands and tingling could be raynauds, which is another autoimmune disease, so be sure to mention this to your doctor.

Please Log in or Create an account to join the conversation.

Re: Not yet diagnosed, but anxious! 11 years 11 months ago #950

  • kb04bp
  • Offline
  • Posts: 4
  • Thank you received: 0
Sandi - I don't think 47 is a safe count as mine drastically decreased. I have been reading up though like you suggested and I feel a little more informed.

Cindy - I have yet to see a hematologist yet...waiting for an appoitment. So, no I have not recieved any type of treatment. What scares me is that my count went from 109 to 47 in one month. I has almost been 2 weeks since then and who knows where my count is today.

Please Log in or Create an account to join the conversation.

Re: Not yet diagnosed, but anxious! 11 years 11 months ago #952

  • youngjoan
  • Offline
  • I founded PDSA after recovering from ITP (7 failed treatments,zero count.) Read my story on the web site (search on 'success story.)Read more about me and my book, Wish by Spirit, at www.joanyoungwrites.com
  • Posts: 60
  • Thank you received: 4
If you look under the 'About ITP' section of the web site, you'll see a link to diagnosis questions. These can help your doctor make sure you have ITP. PDSA sometimes hears from people who are misdiagnosed,so it is important for your doctor to have as much information as possible. The new ITP Consensus report lists the recommended diagnostic tests (see link in the news section of the home page)

Good luck with this.

Please Log in or Create an account to join the conversation.

Re: Not yet diagnosed, but anxious! 11 years 11 months ago #953

  • Melinda
  • Melinda's Avatar
Are you having any other symptoms besides the heavy period? What does your doctor say about your cold hands/feet? When will you be able to get an appointment with a hematologist?

You are concerned that your count may be lower than the 47k it was 2 weeks ago - why not go in and get a CBC done and then you will know for sure. I like the quote I have in my signature: Instead of wasting your time worrying about symptoms, just get it checked out. -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

Re: Not yet diagnosed, but anxious! 11 years 11 months ago #960

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
KB:

Yes, your count did go down, but 47 is still considered safe and generally above treatment level. I understand your concern; going from 109 to 47 is a big drop. That is the nature of ITP though (if you do have ITP). It's also possible that your counts are the same or have gone up.

In the meantime, your GP could order another CBC so you can get a more current count.

Please Log in or Create an account to join the conversation.

Re:Not yet diagnosed, but anxious! 11 years 10 months ago #1069

  • kb04bp
  • Offline
  • Posts: 4
  • Thank you received: 0
UPDATE:

I went to my FP to get CBC done in the meantime while I waited to see the hematologist. My family doctor called me this morning with the CBC results - my count is at 24. He called immediately and got me in to see the hematologist on Monday! I'm a little anxious now that my count has decrease again, but I feel relieved that I will get to see someone and discuss where to go from here.

I will update you all on how my appointment went on Monday!

Please Log in or Create an account to join the conversation.

Re:Not yet diagnosed, but anxious! 11 years 10 months ago #1155

  • kb04bp
  • Offline
  • Posts: 4
  • Thank you received: 0
UPDATE #2:

Went to the hematologist today. Considering CBC from last week showed a count of 24 he put me on 100 mg of prednisone. I have to get bloodwork done twice this week and then f/u with him next Monday. He did discuss other treatment options, but hopefully this works. I see from other posts on here and from the hematologist that the real trick is whether or not my counts stay up once I start to wean my dose.

One thing at a time...today was very overwhelming! I do appreciate all the information and support here!

Please Log in or Create an account to join the conversation.

Re:Not yet diagnosed, but anxious! 11 years 10 months ago #1158

  • Angel85
  • Offline
  • What we have is now & right now we have each other
  • Posts: 522
  • Thank you received: 13
I hope they do stay up for you once you start to taper the dose, my counts always go back down once i taper. I am now down to 5mg and i know they are low because i am getting more unexplained bruising and more petechiae this week. Although we do want them to be lower then 30 this week, so i can start the Nplate this friday.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo