FertileThoughts.com - Infertility, adoption, pregnancy and parenting discussions
Mosaic Turner's Syndrome.

Thanks Thanks:  0
Likes Likes:  0
Dislikes Dislikes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 12
  1. #1
    Shetlander
    has no status.
    Registered User

    Join Date
    Jun 2009
    Location
    Connecticut, USA
    Posts
    7
    Post Thanks / Like

    Mosaic Turner's Syndrome.

    Hi!

    I'm brand-spanking new to this site.

    I've been diagnosed with mosaic turner's syndrome, I found out last week I had turner's and was told not to try to get pregnant again,
    and then today I got the energy to go and camp out at the RE's office til they gave me the actual karyotyping results.
    Which show that I have 30% mosacisim of turner's.

    I don't know a thing about this syndrome and had never ever heard of it before last week when I was told "you have a birth defect, no IFV, no babies".

    I really just want as much info as is possible to help me make the decisions that will be upon me to make.

    I'm 27 and have been married for about a year, my husband and I have had 2 miscarriages, which is what prompted my being pushy enough to not accept "bad luck" as a medical answer for anything.

    I thought my hormone levels were off, because they were so very low in both pregnancies. But it turns out I just have Turner's.

    Well that absolutely everything I know!

    PS: I'm 5ft7, 27yrs, and show no other typical signs of Turner's, hence the not knowing til now and being shocked about it.


    Ciao fa now!


  2. Advertisement


  3. #2
    Natalie01
    has no status.
    Registered User

    Join Date
    Jul 2009
    Location
    London
    Posts
    10
    Post Thanks / Like
    Wow,

    What a fascinating case. I guess my percentage of TS must be a lot higher because I am a mosaic too. but I do show the usual signs. Many TS ladeez are told to avoid any form of IVF on a case by case basis mainly due to heart reasons but genetic probs could also be a reason too I guess. I never knew that our jolly little syndrome could have so many permentations. Nice to meet you.

    Cheers

    Nat


  4. #3
    babyhope8
    has no status.
    Registered User

    Join Date
    Oct 2008
    Location
    CT
    Posts
    23
    Post Thanks / Like
    Hi!

    I am 33 and I was diagnosed with Mosasic Turner's last Fall. I was completely shocked as well! The testing was done by my RE as my FSH was in the 30's (and obviously not common for someone my age).

    I do not have any physical symptoms that people can see, but I do have high blood pressure since I was in my mid 20's and I am followed by a cardiologist for that (I am not overweight and I eat a healthy diet).

    And of course, I know that my infertility has obviously been affected (which is common in Turner's).

    I tried 7 injects cycles and had BFN with all. I moved onto Donor Egg this Fall and I am currently 6 weeks pregnant so you absolutely can have babies if your own eggs fail. There are extra precautions (higher risk for heart problems during pregnancy) and I was actually turned down by one RE due to my diagnosis of Turner's but I found one that will work with me and here I am!


    Good Luck!

    On a side note.... I see we (Shetlander) are both from CT!


  5. #4
    Natalie01
    has no status.
    Registered User

    Join Date
    Jul 2009
    Location
    London
    Posts
    10
    Post Thanks / Like
    Hiya,

    Congrats. Thank you for your hopeful message, I hope all goes well for you and for your little one.

    xx


  6. #5
    Shetlander
    has no status.
    Registered User

    Join Date
    Jun 2009
    Location
    Connecticut, USA
    Posts
    7
    Post Thanks / Like
    Hi Natalie!
    Hi BabyHope!

    Well, it's a life time since I posted last.
    That was back in May 09.
    It's now Jan 2010, so Happy New Year.


    since that post I've had;
    Cardioechogram,
    cardio thorasic MRI,
    Bone density testing,
    Renal Ultrasounds,
    HSG, and about to have the SHG.
    FSH, LH, AMH, Estradol and one other I forget which monthly blood tests on day 3...I'm all over the place, FSH varying from 5 to 14, up and down as we go.
    Also have Ovarian ultrasounds.

    And probably a few other tests I don't recall off the top of my head.


    Well, on honeymoon (Jul/Aug 08)I had a miscarriage, just under 5 weeks, and well we didn't go to the hospital or a Dr as we were not in our home state and I thought it better to deal with it alone.
    Then I had another miscarriage in Oct 08 at 9wks, then another in April 09 at 6 wks...and then we went to the RE, with the two medically documented miscarriages.

    So, after all the testing the RE did ...
    I have a heart defect, fairly insignificant, 46% of normal width on one artery, this means any more than twins would be troublesome and very worrisome for us, so two is the max to implant.

    That's right I said implant, we're doing IVF!!
    With my eggs!! With PGD!
    So, we started our very first fertility treatment in Nov, in at the deep end with IVF.
    The IVF worked, we got 8 eggs, all 8 fertilized and three passed the PGD test, 2 of which survived the PGD test.
    So they implanted two little male embryos and sent me home.
    I got my positive pregnancy result ten days later and didn't have a single moment of "yippie" having been there before.
    We were also told that with using my own eggs there would be a very high risk of miscarriage.
    But on the bright side, the eggs that didn't pass the PGD certainly would have ended in miscarriage.

    The PGD results did not show any TS. There was infact only one female embryo and she was "normal" but did not survive the PGD test itself.
    The ones which were not normal were chromosomally chaotic, one even had no sex chromosomes at all, no x no y, nothing. And the rest were all effected on other chromosomes.
    Of the 23 pairs of chromosomes they can only test for 11 of the pairs, so we went home knowing fine well that the two inside me had a high risk of not being compatable with life.
    And indeed they were not, at 5 weeks I had another miscarriage, and there ended our first IVF attempt on Christmas Eve.

    BUT, we've done the very best we can and the most we can do where we are with the technology available, and this miscarriage was therefore a lot easier to cope with, no blaming and no whys.
    So, we're going to get right on and start a new IVF cycle in Jan or Feb, I've a few other stressful things going on just now, so we might wait til Feb so that I can be stronger at the start.

    So, yikes, seems like the world having been tipped on it's head again is somewhere I just have to pick myself up from and continue on.


    We go to Yale's Reproductive Endochronology Clinic in New Haven, but live in the South East of CT.
    Congrats to you BabyHope!! Wonderful to see your good news!

    Either of you message me anytime now!
    Oh and Nat love, if you've any shrapnel in your pocket, be a gem and nip out for some crunchies...I permanently have that Friday feeling!!
    Jo xXx


  7. #6
    Natalie01
    has no status.
    Registered User

    Join Date
    Jul 2009
    Location
    London
    Posts
    10
    Post Thanks / Like
    Happy 2010,

    I know what you mean. I've had loads of tests done in my time, I forget half the time what I've had done! I hope the IVF works out for you.

    xx


  8. #7
    north
    has no status.
    Registered User

    Join Date
    Sep 2010
    Posts
    2
    Post Thanks / Like
    Hi

    I am 27years old and at age 16 I been told that i am Moasic turner syndroms, I have normal hight wich is the taller in the family, all what i do have from turner is that i do not have breast and period. I want to know if there are any creams or medication that will help me develop breaset i mean to enlarge my breset.



    the other thing that i want to know when you gues where talking about baby, as I understand that for turner syndrom woman to get babey she need someone else to doner egges for her then she might have a baby let me know if there are option rather than doner of eggs from other woman please.



    Regards
    North


  9. #8
    Shetlander
    has no status.
    Registered User

    Join Date
    Jun 2009
    Location
    Connecticut, USA
    Posts
    7
    Post Thanks / Like
    Hi North!

    I have done IVF with my own eggs as I happen to have my own ovaries and eggs.
    I've been pregnant 4 times naturally and twice with IVF using PGD to test the embryos for viability.

    I'm currently 20 weeks along.

    When deciding to have children, for anyone, there are a lot of things to consider. If you have difficulty concieving or are inable to concieve a child you really need to go to a reproductive doctor to discuss your own options.

    The first option we were given was donor egg, and if I had not already been pregnant and not had my own eggs this is the way I would have gone.

    As far as creams to increase bust size, I do not know of any. I have a very large bust and so have never had to look into this.
    I believe that there are some possibilities out there, and that you would really need to talk to a Dr about this.

    I'm sorry I'm not of more help to you.
    Joanna.


  10. #9
    north
    has no status.
    Registered User

    Join Date
    Sep 2010
    Posts
    2
    Post Thanks / Like

    thanks

    Thank you hune

    I hope the other girls might help me with the bust medication. I hope you will have a healthy nice baby.

    Regards
    Fatima


  11. #10
    BC-hoping to hatch
    has no status.
    Board Coordinator
    BC-hoping to hatch's Avatar
    Join Date
    Dec 2012
    Posts
    2,074
    Post Thanks / Like
    I know this is an old thread, but I thought I'd bump it up. Today I learned that I have mosaic Turner's. We've just had 2 chemical pregnancies (a 4w4d loss and a 5w5d loss) so the doctor ran lots of tests. 26/30 cells they tested (I guess blood cells) turned out to be normal 46XX, with the remaining 4 being 45XO. It came as a big surprise as I have none of the indications of Turner's. I'm 36 and FSH has varied between 7.4 and 7.6. My RE said that while my blood was 26/30 XX, each organ manifests itself differently so we can't know what percentage of my eggs are affected. We are now planning to do PGD for our third cycle. Dr. thinks we can use my own eggs--he just had a patient with my syndrome who had a worse response to meds; she's currently pregnant. I'd appreciate any insight, advice, or experiences.
    Me 40 Hashimoto's, endo
    DH 36 MF
    9/11 TTC
    2012 lap (endo), DH's varicocelectomy, IUIs=BFN
    IVF1(2/13)=loss
    IVF2(4/13)=loss
    IVF3(8/13) FET(10/13) euploid blast=loss
    BANKING FOR PGS
    IVF4-6(2014)=9 euploid blasts
    FET (9/23/14) 2 blasts BFP: girl 6/11/15
    FET (8/23/16) blast=loss@4w5d
    FET (10/11/16) 2 blasts BFN
    IVF 7-8(2017)=3 euploid blasts
    FET (5/22/27)=1 blast=loss


Page 1 of 2 12 LastLast

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  
DISCLAIMER: Fertile Thoughts allows advertisers to publish information about their services. Fertile Thoughts does not provide medical advice or endorse any particular service or approach to treating infertility. We encourage people to learn as much as possible about the range of options available before committing to any one. We also encourage users to share their thoughts on all fertility options on our forums.

Forum Stats

  • Forum Members: 97,616
  • Total Threads: 352,308
  • Total Posts: 4,534,780
There are 192 users currently browsing forums.

Advertisement

Visit Our Partner Sites: Fertility Treatments