Trouble TTC

Lurker Question

Hi All,
 
I mainly post on BOTB.

I have a very rare variant form of a rare chromosomal abnormality. As such, DH and I will both be getting our DNA sequenced to see if I have any other chromosomal issues we should know about, and to see if DH is a carrier for my disorder. If either of these are the case, we will have a big decision to make, and may end up going the IVF route with embryo testing.

However, if not, we will proceed with TTC. The caveat is that my disorder is metabolic in nature and requires strict adherence to a very limited diet (read: no protein of any kind, no dairy, some veggies, some fruits, and a prescribed amount of starch that will need to be weighed prior to consumption.) Not following this diet will lead to a 96% chance of profound cognitive impairment in the fetus, microcephaly, heart problems, etc.

At my upcoming metabolic appointment, the doctor plans to discuss IUI as a potential option for conceiving as statistically, dietary adherence on the whole is low (although I would strictly adhere to it given the gravity of the consequences). But I believe the goal is to create a successful pregnancy sooner and thereby decrease the amount of time a woman needs to be on the diet since its so limiting and the consequences so severe. I have been finding the information regarding IUI success rates difficult to sift through - could anyone point me in the right direction? I'm just trying to decipher if the potential monthly success rates (combined with cost) would make it worthwhile to pursue vs. TTC naturally. I guess my fear is that the diet will be very hard for me to adhere to and stressful given the gravity of the complications. I'm not trying to come off as impatient, I'm just overwhelmed by this responsibility and am trying to learn all of my options so I can have a meaningful and informed conversation with my doctor.

I hope I haven't offended anyone by posting here. If so, that sincerely wasn't my aim and I apologize.

Thanks, ladies.
TTGP December Siggy Challenge: Favorite Holiday Movie:
~Santa Claus is Coming to Town~

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TTC #1: July 2014
Me: 31  DH: 29
DX (me): Inborn error of metabolism - protein restriction, metabolic formula & weekly blood tests
DNA Results (7/1): DH is NOT a carrier for my genetic disorder! 
7/3: Metabolic clinic gave the green light to TTC - holy crap!

Re: Lurker Question

  • edited January 2014
    I guess it would depend on if DH was a carrier. If not, you could try IUI given the strict diet. I did my first IUI yesterday, and the nurse said I have the same 20% chance of geting PG As everyone else.

    Good luck with your appointment. I hope your DR can help you!
  • I don't know to much about sifting through all of the data regarding IUI.  Does your insurance cover it at all?  Your diet sounds like it will be strict and would cause stress in and of itself!  Whichever route you take, I wish you luck.  And I hope everything goes quickly for you!
    ********SIGGY WARNING***********

    TTC since 01/2012

    Started RE 6/2013
    Unknown infertility (possible PCOS) and Low Progesterone (Don't ovulate on my own)
    DH is normal
    09/2013 Prog.Clomid100mg,Estradiol-No Response-BFN
    10/2013 Prog.Clomid100mg, Estradiol, Dexamethasone, No Response-BFN
    11/2013 Prog.Clomid 150mg, Estradiol, Dexamethasone-No Response
    12/2013 Prpg-Clomid 150mg, Estradiol, Dex.- Little Response No ovul.
    01/2014 Prog- Letrazole- One follie 20mm. Triggered on CD12
    02/05/2014 POAS 14dpo- BFP!  1st Beta came back 189

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  • calindi said:
    It would be beneficial for you to track your cycles and use OPKs now to get a good handle on your cycles before timing counts, so you can detect potential ovulation issues and figure out timing before you put yourself through that diet.
    I would do this for a few months regardless of what route you take.  It will give you a lot of information about how your cycle works.  I'm not sure about statistics for IUI, but remember, all of us on this board started out thinking it would be easy enough to get pregnant, and here we are 2-5 years later, still at it.  Not to be a Debbie Downer, but there's nothing to say you WON'T have IF issues on top of your other health concerns.  So I wouldn't worry too much about statistics.  Since they are based on populations, they don't mean anything for individuals anyway.
    Baby girl N born 10/29/14!

    **Follow your heart, but take your brain with you**


  • calindi said:
    That seems like a huge sacrifice. I am in awe of your commitment and deduction to such an undertaking! Most of us here are infertile, meaning we don't have normal fecundity rates (chance of getting pregnant each month). For most of us, that chance is under 5% each month. For a normal couple just starting out trying, they have a 20% chance, so a medicated IUI gives most of us here a 20% chance, bringing us in line with a normal fertile couple. However, the medications also risk twins or triplets. I have no idea how much it would help an otherwise fertile couple to conceive. I assume it would help improve chances, but I can't imagine it gives you much above a 30% chance each month since so many other factors have to be in alignment. Your doctor would likely know more. Do you have to be on this diet throughout the pregnancy? How long before conceiving do you have to be on it? It would be beneficial for you to track your cycles and use OPKs now to get a good handle on your cycles before timing counts, so you can detect potential ovulation issues and figure out timing before you put yourself through that diet.


    I have to be on this diet from 3-6 months prior to TTC, the entire duration of TTC through birth. Assuming my DH isn't a carrier, and therefore any potential child will not have the same disorder, as soon as I am BF I can resume a normal diet as the baby would be able to function normally metabolically where I could not.

    I did start temping this month so we will see how that goes!
    TTGP December Siggy Challenge: Favorite Holiday Movie:
    ~Santa Claus is Coming to Town~

    image


    image

    TTC #1: July 2014
    Me: 31  DH: 29
    DX (me): Inborn error of metabolism - protein restriction, metabolic formula & weekly blood tests
    DNA Results (7/1): DH is NOT a carrier for my genetic disorder! 
    7/3: Metabolic clinic gave the green light to TTC - holy crap!
  • calindi said:
    It would be beneficial for you to track your cycles and use OPKs now to get a good handle on your cycles before timing counts, so you can detect potential ovulation issues and figure out timing before you put yourself through that diet.
    I would do this for a few months regardless of what route you take.  It will give you a lot of information about how your cycle works.  I'm not sure about statistics for IUI, but remember, all of us on this board started out thinking it would be easy enough to get pregnant, and here we are 2-5 years later, still at it.  Not to be a Debbie Downer, but there's nothing to say you WON'T have IF issues on top of your other health concerns.  So I wouldn't worry too much about statistics.  Since they are based on populations, they don't mean anything for individuals anyway.
    This exactly. It has taken many of our friends about a year to get pregnant, so between that, plus needing to be on this diet prior to conceiving, I am looking at up to two years on this diet even if we are healthy and perfectly fertile...let alone how long I would have to be on it if we have trouble. This has been another consideration for us!

    Thank you all for the replies!
    TTGP December Siggy Challenge: Favorite Holiday Movie:
    ~Santa Claus is Coming to Town~

    image


    image

    TTC #1: July 2014
    Me: 31  DH: 29
    DX (me): Inborn error of metabolism - protein restriction, metabolic formula & weekly blood tests
    DNA Results (7/1): DH is NOT a carrier for my genetic disorder! 
    7/3: Metabolic clinic gave the green light to TTC - holy crap!
  • I've been told the first iui is the most optimistic! It has the highest sucess rate, then subsequent ones after words, not as great.



    image
    DH= burn vic, abn sa MFI|| ME= PCOS, Sarcoidosis, Hypohyroidism HSG-OK
    tried naturally 2011 & 2012-
    TTC with nurse practitioner 2013
    2 clomid cycles- both bfn, started seeing RE 2013 
    FEBUARY PLAN-HSG|| March Game plan-FEMARA IUI+TRIGGER 
    MARCH-BFP (beta1;104-beta2;302)-bc of hsg
    [[all welcome !!!!!!!!!!!! ]]
    image
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