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ITP and other autoimmune disorders...

lolliMlolliM
in Trying to Get Pregnant
Hi guys!  I was just wondering if anyone else here has ITP or an autoimmune disorder and what precautions if any that you are taking when TTC & planning for your future baby.  I was diagnosed with ITP when I was 15 and after months of prednisone and gamma globulin I went through a spleenectomy and have had high platelet counts ever since.  Before I had the surgery though, my surgeon and hematologist sat me down and told me that I can have children in the future, but I shouldn't.  I was ok with just adopting when I was younger but I'm married now and we want to try for our own first.  My obgyn is awesome and she feels that it will be ok.  I was just curious---thanks y'all!
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Re: ITP and other autoimmune disorders...

  • GregermisGregermis member
    I don't have ITP, but I did get Iritis earlier this summer.  It's not confirmed autoimmune yet (hopefully never)... but while I was on steroids I was told to not "try too hard" to get KU, but that if I did, it would probably be okay.  Not sure what that was suppose to mean, and  this is probably no help, but GL!
    TTC #1 Since 4/2010, Cycle 30
    Positive for HLA-B27, I'm a mutant :p
    Testing - Me ok, gluten issue? DH - borderline count, low motility
    4/28/11 IUI#1 = BFP!(5/25), EDD 2/2/12 - m/c 5w3d
    7/3, 7/31, 9/25 - IUI#2-4=BFN
    IVF#1 - 1 blast = BFP!! (12/30), EDD 9/9/12, confirmed c/p 4w2d
    FET#1 3/2/12 - 2 blasts =BFP!! EDD 11/18/12, us#1 = twins! Confirmed m/c 5w6d
    4/20-surprise BFP and another c/p 4w2d
    FET#2 7/16/12 - 2 blasts = BFN
    FET#3 8/20/12 - 1 blast - BFP!! Beta #1-2=177, 354
    1st u/s 5w6d, one beautiful little HB :), 2nd u/s 146bpm
    baby girl born 5/10/13

    TTC#2 since 12/17/2014, Cycle 8
    Repeat Testing...FSH=12, AMH=3.8, AFC=28. 
    IUI#5 5/10/15- c/p?
    IVF#2 8/19/15 - cancelled due to cysts
    IVF#2 take two 10/2015 - 5 blasts frozen
    FET#4 12/11/2015 - BFN - 4 blasts remaining
    FET#5 2/18/16 - BFP!!!  Beta1-3, 126, 250, 745!!

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    Tons of love and ((hugs)) to my IF sister NMscubagirl


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  • KellerMamaKellerMama

    I have Hashimoto's (thyroiditis) which is an autoimmune disease.  The only modification that my doctors say they will make is in increasing my thryoid medication immediately after I get pregnant--this is a must for successful pregnancy they say. 

    I had a m/c in June before I knew I had Hashi's and therefore was not taking any thyroid meds at the time.  This may be why I m/c'ed but since it was so early AND my first pregnancy they can't be sure.  Good luck to you!

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  • lolliMlolliM
    Well  I know how bad prednisone screwed up my body (and I refuse to ever go on it in the future!) so I can imagine it would be bad to a fetus!!!!!  Thanks GL to you too!!!  Hope yours isn't autoimmune!
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  • lolliMlolliM
    imageKellerMama:

    I have Hashimoto's (thyroiditis) which is an autoimmune disease.  The only modification that my doctors say they will make is in increasing my thryoid medication immediately after I get pregnant--this is a must for successful pregnancy they say. 

    I had a m/c in June before I knew I had Hashi's and therefore was not taking any thyroid meds at the time.  This may be why I m/c'ed but since it was so early AND my first pregnancy they can't be sure.  Good luck to you!

     

    Best of luck to you too!!!  

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  • tosh24tosh24 member

    I've had ITP since I was 19....I don't know anyone else with it! My case isn't as severe as yours though, so I can't really comment on your doctor's advice. I've had a daughter with no complications, and obviously I'm TTC again. When I was pregnant, I had to get blood drawn every 2 weeks to keep an eye on my platelet count and I had one consult with a high-risk OB. All he said to me was that if my platelets really plummeted, they would put me on steroids even though I was pg. I also had to have a consult with the anaesthesiologist to go over pain management in labour. If your platelet count is less than 100, you cannot have an epidural. In the event that you need a c-section, they have to put you under which obviously increases your risk (in addition to the bleeding risk from surgery). Since having my DD, my counts have been OK but still not normal - usually between 100 and 110. My doctors have no concerns about me TTC.

    I would suggest you go in for another appointment with your hematologist to discuss your plans. Since you've been in remission for so long, getting pg may not be the big deal they thought it was going to be when you were younger. Whatever you decide, GL! :) You can always PM me if you need an ITP friend lol :p

    Me: 35 I DH: 38
    *TW loss and children mentioned*
    DD:2006 | Dx: Unexplained Secondary Infertility | DS: 2011

    TFAS since 2012

    Oct 16: Spontaneous BFP | m/c @ 9w1d (massive SCH) | D&C
    Apr 17: IUI #1 = BFN
    May 17: IUI #2 = BFN
    Jun 17: IUI #3 = Late BFP (18 DPO) | NMC 17Jul17 @ ~6w
    Aug 17: IUI #4 = Cancelled due to premature ovulation | TI = BFN
    Sep 17: IUI #5 = Cancelled due to overstimulation (10+ follies)
    Nov 17: IVF #1 = Cancelled due to non-IF related health issue | TI = BFN
    Dec 17: IVF #1 = Puregon 200, Menopur 75, Orgalutran, Suprefact trigger due to OHSS risk | 22R, 18M, 16F, 10B frozen  
    Feb 18: FET #1 (medicated) = BFN
    Mar 18: FET #2 (natural cycle) = CP (beta 1: 54; beta 2: 0)
    Apr 18: FET #3 (natural cycle) = cancelled due to missed ovulation
    Apr 18: FET #3 (natural cycle) = BFP! Beta 1: 201  Beta 2: 585 Beta 3: 3254 Beta 4: 9715 U/S 19May - one bean measuring on track with a HB of 125!
    EDD: 07Jan2019 Team Green
    My Rainbow Baby Boy born 03Jan2019 <3 

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  • lolliMlolliM
    imagetosh24:

    I've had ITP since I was 19....I don't know anyone else with it! My case isn't as severe as yours though, so I can't really comment on your doctor's advice. I've had a daughter with no complications, and obviously I'm TTC again. When I was pregnant, I had to get blood drawn every 2 weeks to keep an eye on my platelet count and I had one consult with a high-risk OB. All he said to me was that if my platelets really plummeted, they would put me on steroids even though I was pg. I also had to have a consult with the anaesthesiologist to go over pain management in labour. If your platelet count is less than 100, you cannot have an epidural. In the event that you need a c-section, they have to put you under which obviously increases your risk (in addition to the bleeding risk from surgery). Since having my DD, my counts have been OK but still not normal - usually between 100 and 110. My doctors have no concerns about me TTC.

    I would suggest you go in for another appointment with your hematologist to discuss your plans. Since you've been in remission for so long, getting pg may not be the big deal they thought it was going to be when you were younger. Whatever you decide, GL! :) You can always PM me if you need an ITP friend lol :p

     

    YAY!!!!!!  Another ITP-er!!!!!  I am so happy to hear that you didn't have any problem having your daughter!  Since I was 15 when diagnosed (and went into remission that same year after spleenectomy), I don't have an adult hematologist!  My counts shot up to over 400,000 after the surgery and have been high ever since.  I have them checked sporadically and they have always been high.  I am so glad to hear your story!!!  I'm new on here so I will try to figure out how to add you as a friend :)  GL!

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