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Please share your experience with immune testing here

NK cells IVIG steroids repeated miscarriage Immune reproductive immunology Alan Beer center AEB ABC antiphospholipid antibodies

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#1 My_time

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Posted 05 June 2013 - 09:41 AM

As you know, the reproductive immunology is widely acknowledged in US and Europe; however, in Canada most REs don’t believe and nor treat the patients for immune issues. I have struggled over a year and half through the system to finally get to a clinic who would facilitate immune testing and is willing to treat me if the issues are found. 

 

With all the hurdles and the extra time and money, I think individuals considering immune testing would really benefit from reading your unbiased experience here. If you have been lucky to get tested for immune issues and received treatments, please pay back by sharing your experience to the rest of us, who are still struggling and wondering if this is the answer to our struggles.

 

Things that we appreciate if you cover here:

 

1) The reason for immune testing - for example:

·         repeated miscarriages 

·         repeated IVF failures

·         blighted ovum, 

·         unknown infertility, 

·         previous immune problems

·         issues with previous pregnancies 

·         one living child and repeat issues or miscarriages while attempting to have a second child (secondary infertility/secondary repeated miscarriage)

 

2) Testing done – for example:

·         extensive full Alan Beer Center testing panel

·         extensive full Reproductive Immunology Associates (RIA) panel

·         selected tests for example: ANA, anti ds DNA; Anti SS-A; Anti SS-B; Antiphospholipid Antibody Panel; Antisperm Antibody Panel; Leukocyte Antibody Panel; Anti thyroid Antibody Panel (anti thyroglobulin; anti thyroid peroxidase); Natural Killer Cells; Tumor Necrosis Factos (CD 16; CD 56; TNF); HLA DQA1; immunophenotype; uterus NK biopsy; etc.

·         Other not really immunology but relevant testing such as MTHFR; Factor V Leiden; Factor II; etc.

3) Treatments received – for example:

·         Steroid treatment

·         IVIG

·         Intralipid

·         LIT (Leukocyte immunization treatment)

·         Humira or other anti-TNF treatment

·         Low molecular heparin injections (Fragmin; lovenox; etc.)

·         Aspirin

·         Other treatments (please explain)

4) Outcome: did you conceive after immune treatments or not. Did you have a successful pregnancy or not.

 

It is important to have both sides of situation here as such I really appreciate to hear about successful and unsuccessful treatments!

 

 

Thank you in advance for your time and to sharing with us your experience!

Mytime


  • gibasgirl, AnnaMarie, Highest hopes and 5 others like this

Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#2 leigh14

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Posted 05 June 2013 - 03:26 PM

It's a good idea to start a thread devoted to this exclusively. I know that there is a similar thread in the Markham section but it's good for others at other clinics to have access to info.

 

I had extensive immune treatments and was a Markham patient too and landed there after our second IVF at another clinic after having a missed miscarriage of twins.  Our primary reason for doing IVF is my DH's vasectomy and on paper everything looked perfect for me from all my initial tests.  But...we discovered that I was a poor responder to meds with a diminished reserve along the way.  On our second IVF I got PG with twins but had a missed m/c.  The doctor blamed "advanced maternal age" (I was 38).  While this could have been the case, something wasn't totally sitting well with me.  I just had a feeling that there might be more going on so I pursued immune treatments (Alan Beer Centre) through the Markham clinic. IVF is a very costly and emotionally draining experience and I wanted to get ALL possible testing done before pursuing it for the 3rd time. Plus, I have a family history of m/c so I thought that I should look into things more.  Even if my tests came back perfect I figured it would be worth it just for the peace of mind of knowing that I knew what I was dealing with. 

 

My tests did not come back perfect. I have two MTHFR mutations that are linked to blood clotting issues that can be linked to m/c.  I had another mutation (PAI...something) that is also linked to m/c. My LADS were very, very low.  My anticardiolin was borderline and my ANA was positive.  My NK cells were highly elevated. As a result it was recommended that I do:  two shots of Humira before cycling, 2 treatments of LIT (only offered at the time in Mexico...It's now offered at Markham), two IVIG treatments, baby aspirin and Lovenox shots.  

 

I was a poor responder in my cycle (surprise, surprise) and only produced 3 follicles. The doctor got 2 eggs, both fertilized and we did a 3 day transfer. My DD is the result of that cycle so it really does just take one. 

 

We were actually recommended for a 3rd treatment of LIT (with my husband's blood and donor) as my numbers never increased.  We decided to go with Dr. Virro's recommendation of going ahead with the cycle and just doing IVIG.  

 

The Alan Beer Centre is excellent BUT I did find that they made me crazy by telling me I needed MORE and MORE testing to check my levels after I became PG.  My levels were never good but they created just enough doubt in me that I continued to pursue IVIG until 18 weeks, including traveling to the States to get it at one point when it wasn't available at the clinic.  Not sure I would do that again...but hindsight is 20/20 and the important thing is that I sustained my pregnancy and have a beautiful little girl. 

 

I should mention for anyone reading this that the Alan Beer Centre mentioned to me that one of the hallmarks of an immune issue is sometimes poor response to meds. This was definitely me.  But...the good news is that just because you may produce low numbers doesn't mean that the eggs are crappy.  It just means that you have more to work with. Another thing that I wonder about with immune issues is not just m/c but missed m/c.  It seems that a lot of people with immune issues have this happen.  My missed m/c experience was absolutely devastating.  Being told there were no heartbeats just killed me. 

 

I think that immune testing is an avenue that more doctors should pursue. I think that when you can mix a good immune protocol with a good stimulation protocol then it can make all the difference. 

 

Leigh


  • gibasgirl, Lisa1981, My_time and 1 other like this
Me: 40
Dx: DH: Vasectomy; need IVF/ICSI ME: D.O.R. and many immunological issues. (Initially presented as "normal" but issues were only discovered after IVF attempt #2 and #3 after testing at new clinic)
IVF attempt #1 Nov.2009, Age 37: Long "Lupron" protocol
Dec.2009: Cycle cancelled due to oversuppression
IVF attempt #2, Age 38: April 2010: 3 eggs retrieved, 2 mature, 2 fertilized, ET of 2 embryos BFN
IVF atempt #3 at new clinic: November 2010, Age 38: 5 eggs retrieved, 4 mature, 4 fertilized, ET of 2 blastocysts BFP
Strong beta numbers but babies not measuring on track but one heartbeat is present. Followup u/s reveals no HB's :( Had D&C--so sad.
Moved to new clinic closer to home + more of a focus on testing for potential immunological factors:
Further testing reveals three mutations related to inherited thrombophilia (2 MTHFR mutations and PA1-1 mutation), positive ANA, elevated NK cells and cytokines and low levels of leukocyte antibodies (LADS), Recommended Immunological treatment: Humira, LIT, IVig and blood thinners if PG
IVF Protocol: Low stim for me/ TESE needed for DH; took Humira in late August and early September; taking DHEA plus Co-Enzyme Q10, vitamins for DH just for good measure! September--two trips to Mexico for LIT treatment, treatments 3 weeks apart
Initial re-testing through Alan Beer Centre after some of the immune treatments reveals only cytokines were lowered, NKs still high and LAD numbers still low. Another LIT in Mexico is recommended. We decide to begin cycle on doctor's recommendation of just doing IVIG.
IVF#4, Age 39 : November 2011: Worst AFC EVER--a whopping 4! Three follicles responded, two eggs were retrieved. Three day transfer of two Grade 1 8 cell embryos: "Fahita" & "Burrito" Stick, stick, stick little ones!
BFP! Beta of 569
Viability u/s at 6 w 2d shows TWO babies measuring on track with heartbeats of 121. Looks like babies might be sharing the same amniotic sac.
Second u/s at 7w 2 d shows ONE baby with hb of 150, measuring 7 w 3 days. No sign of twin. Vanishing twin syndrome?
Third u/s at 8 w 2d shows ONE baby with hb of 170, measuring 8 w 3 days. Looks like a little jellybean!
12 week u/s at 12 w 2 days and baby is measuring 12 w 5 days with a heart beat of 150. Baby mooned us and waved at us with one hand....looked like a "royal" wave to me!
13 week doctor's appointment, HB=155 on doppler
14 week u/s to check cervix, HB=148
16 week u/s to check cervix, HB=138, baby had hiccups!
20 week u/s--everything looks good! HB=130, looks like we're having a GIRL!
IPS results very good!
39 weeks: Our baby girl arrived!!! She is healthy and beautiful! We are so happy! :)

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#3 Sabina

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Posted 05 June 2013 - 03:33 PM

Hi Everyone - here is my story, fresh from this month!

 

1) The reason for immune testing

  • one DD who's 8 (no issues conceiving at all!) with the following:
  • unexplained secondary infertility x 5 years
  • 4 x IUI (all BFN's)
  • repeat pregnancy loss: IVF#1 = 1 missed m/c @ 7 weeks, FET #1 = 1 m/c @ 9 weeks (very large SCH/massive bleeding)

2) Testing done

· extensive full Alan Beer Center testing panel - Results: MTHFR (hetero); PAI-1; high TNF (cytokines @ 37); low T-Reg cells (0.3); positive ANA hypothyroid

 

Treatments received

  • Humira (anti-TNF) - 2 shots pre-cycle: reduced cytokines to 22 (from 37)
  • PregVit
  • IVIG - after retrieval
  • Baby Aspirin - started on day 1 cycle
  • Lovenox - after transfer
  • Fresh IVF: Transferred 1 x 5-day 5BB blast (3 frozen)

 

4) Outcome: BFN

 

Next steps: Discuss Prednisone and Intralipids for future FET's...

 


  • My_time likes this
Me 39, DH 37 DD 8 years old
Newlife Fertility Clinic - Dr. Soliman 4
IUI's - all BFN

IVF#1
- Jan 2012: 7 retrieved, 7 fertilized, 4 blasts (2 x 4AA, 2 x 3AA!)Transferred 2 embryos, 2 frozen; BFP!Missed M/C @ 8 weeks
FET: Transferred last 2 frosties: BFP!Very large subchorionic hematomaM/C @ 9 weeks
New clinic - MFC - Sept 2012, Dr. Virro

ABC testing Elevated cytokines (Th1/Th2)

IVF#2
- May 2013 (Humira, IVIg, Lovenox, Baby Aspirin, PregVit)
May 21 - Retrieval of9 eggs, 5 fertilized (3 natural IVF, 2 ICSI)
May 24 - Day 3 Report: 3 x 8-cell (grade 1); 2 x 8-cell (grade 2)
May 26 - 5 day ET of 1 hatching '5BB' blastocyst (from ICSI); 3 others made it to blasts (grades 1 & 2) and praying they will mature by day 6; 1 morula...2ww here we go!
May28 - 3 frosties! (5BB, 4BB & 3BB)...BFN
Follow-up Jul 4 - plan isfor Sept FET;
AEB retesting in the meantime2 x LIT

FET #2
- Feb 2014 - medicated cycle (Lovenox, Neupogen Injections, Intralipids)... BFN

FET#3 - April 2014 - natural cycle (Lovenox, Neupogen, Intralipids, Dexamethasone)

#4 My_time

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Posted 05 June 2013 - 03:37 PM

I am relieved people are starting to reply. I was worried that this thread will not get any response. 

Leigh: thanks for sharing your story, which is very similar to mine (age, low responder, repeated MCs, etc). 

 

Sabina: thanks for presenting the other side of the story. That is really helpful as I want to see how effective these treatments really are. 

 

Thank you for sharing!!!! I really appreciate it!


  • Sabina likes this

Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#5 saw7982

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Posted 05 June 2013 - 04:46 PM

Hi All,

 

I have not had any immune testing done, but after several failures my dr added intralipids, prednisone and fragmin to my FET protocol this time and I got my first BFP. I'm only 6 weeks so it's too soon to say whether this will be a successful pregnancy, but my beta level are good. Fingers crossed for my ultrasound on friday.


  • My_time and Renae like this

#6 Sabina

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Posted 05 June 2013 - 09:27 PM

Thanks for starting this, My Time - great idea. I'm hoping you will get many more responses. This is definitely interesting and informative information already. :)

 

Hi Saw7982: I wish you all the best for your u/s on Friday. Please keep us posted! And I'm so happy to see that your protocol worked. I am wanting to speak to my Dr about the Intralipids/Prednisone protocol also. FX! 


  • My_time likes this
Me 39, DH 37 DD 8 years old
Newlife Fertility Clinic - Dr. Soliman 4
IUI's - all BFN

IVF#1
- Jan 2012: 7 retrieved, 7 fertilized, 4 blasts (2 x 4AA, 2 x 3AA!)Transferred 2 embryos, 2 frozen; BFP!Missed M/C @ 8 weeks
FET: Transferred last 2 frosties: BFP!Very large subchorionic hematomaM/C @ 9 weeks
New clinic - MFC - Sept 2012, Dr. Virro

ABC testing Elevated cytokines (Th1/Th2)

IVF#2
- May 2013 (Humira, IVIg, Lovenox, Baby Aspirin, PregVit)
May 21 - Retrieval of9 eggs, 5 fertilized (3 natural IVF, 2 ICSI)
May 24 - Day 3 Report: 3 x 8-cell (grade 1); 2 x 8-cell (grade 2)
May 26 - 5 day ET of 1 hatching '5BB' blastocyst (from ICSI); 3 others made it to blasts (grades 1 & 2) and praying they will mature by day 6; 1 morula...2ww here we go!
May28 - 3 frosties! (5BB, 4BB & 3BB)...BFN
Follow-up Jul 4 - plan isfor Sept FET;
AEB retesting in the meantime2 x LIT

FET #2
- Feb 2014 - medicated cycle (Lovenox, Neupogen Injections, Intralipids)... BFN

FET#3 - April 2014 - natural cycle (Lovenox, Neupogen, Intralipids, Dexamethasone)

#7 Kate33

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Posted 06 June 2013 - 02:09 PM

Hi ladies,

 

I just wanted to witter my story so far.

 

I am 28 years old and TTC for almost 4 years:( I have never been preg or so I think. I have done 3 IUI's and 1 IVF (outside the country) all FBN... up until i met Dr. Virro i thought the reason for not getting preg is because of high FSH... well, that is not the case I mean high FSH is part of it as I am poor responder but It turns out I have immune issues. I am not sure how to pronounce all the test I have done but I did a lot of test. When I did my Endo Biopsy they found that I had Anti-bodies in my lining as well. Who knew!!! Is interesting that to all the doctors I went to, none actually mentioned that immune might be the issue. If I didn't meet Dr. Virro I would have gone on with IVF after IVF with no success. So when I received the results from AEB Centre Dr. V said that all the major areas are perfect and the issues I have are easily fixable. (sorry ladies like I said don't know how to pronounce all the names). I have done 2 LIT's, I had big septum removed 2 weeks ago, and I am currently on Metformin, PregVit, and Vitamin D. I have an appointment for a blood test this Monday to see if the number for LIT have changed, and I have an appointment with Dr. V on Friday June 14 to talk about our next move. 


  • My_time likes this
Me:30 Immune Issues DH:34 TTC since 2009

IVf #1 outside the country. Cant remember the details but was a BFN

3 IUI's with clomid BFN. why isn't this working...In process of doing immune testing. Have to do 2 LIT's and IVIG

LIT #1 April 2013
LIT #2 May 2013 Currently taking Metformin, PregVit, Vitamin D 200iu.Septum surgery May 24, 2013.
LIT boost with donor blood August 2013.September 9 Endo Biopsy and blood test.

IVF #2 October! ER October 22. 8 retrieved, 4 fertilized, ET October 27. 2 Made it to transfer day. Transferred 1 (3AB) 1 (5BB) left to freeze. 8dp5dt HPT BFN latter that day AF showed. November 6 BETA BFN

FET#1 December 16, 2013. Beta December 27. 7dp5dt hpt positive!!! I can't believe it!! Beta #1 December 27 Low Beta #2 December 29 77 still low but it has doubled. Beta #3 December 31 28 Stopped all meds m/c January 4, 2014 at 5 weeks

IVF#3 April 2014. Gonal F and Repronex. ER April 9. Beta #1 11dp5dt 364 Beta #2 14dp5dt 894 Bets #3 16dp5dt 1590 Beta #4 18dp5dt 3,311 No more betas thank God! Ok maybe one more Beta #5 21dp5dt 10,838 Now I mean it no more betas!! Viability u/s May 16 Ultrasound #1 at 5 weeks 5 days due to some bleedingwas only 99 bpm. U/S #3 at 7 weeks 5 days. Baby measured 6 weeks 2 days. Dr. said to take the pills as this is a m/s or to wait few weeks. U/S #4 at 9 weeks. Baby still measuring 6 weeks 2 days. U/S # 5 at 10 weeks. Is official. Baby stopped developing at 6 weeks 2 days. Took Misoprostol to induce m/s.M/S "10" weeks.

FET # 2 August 2014 htp 6dp5dt BFP Beta #1 12dp5dt 291Beta #2 14dp5dt 625 U/S #1 at 6 weeks 5 days. All looks good. Measuring 2 days behind heartbeat 124 bpm U/S #2 at 8 weeks. Measuring on track. Heartbeat 156 bpm.

19 week u/s We are having a GIRL!!!! May 2015 our daughter is here

IVF# 4 October 12, 2016.  ER October 22. 8 retrieved, 7 fertelized. ET October 27 transferred 1 blastocyst 5AB. Froze 4 blastocyst on day 5. 5dp5dt HPT Negative. 7dp5dt HPT fait positive. Beta November 8 595!! Beta November 10 1650! Viability u/s November 29.

#8 Wantingour1st

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Posted 19 June 2013 - 05:20 PM

I don't understand why Create won't test the NK cells.  they said it's useless and you can't test in the uterus but I thought I read you can test in the uterus. 

 

Another reason to get the Natural Killer cells testing I read is that 50% of women with autoantibodies to thyroid have activated natural killer cells.  http://haveababy.com...on-dysfunction/

 

Now I want to go to the Markham clinic and now i'll have to wait and good Lord, I can't really wait as I turn 43 in 2 months!  good God this is terrible. 

 

I recently found out I have subclinical hypothyroidism, a very mild degree of autoimmunie thyroid disease, borderline levels.  I am now on thyroid med called Eltroxin and my TSH thyroid stimulating hormone level was around 2, 2.5 but I took a natural supplement with iodine and a few days later my TSH went to 4.7!  it's now 1.8 and i'm still taking Eltroxin for now.

 

 

I read that if you do test for NK cells all you need is Intralipid pill and a corticosteroid like Prednisone to enhance implantation.  baby aspirin " What About Taking a Baby Aspirin a Day?In my opinion, aspirin has little if any value when it comes to IID, and besides, could even reduce the chance of success. The reason for this is that aspirin thins the blood and increases the potential to bleed. This effect can last for up to a week and could complicate an egg retrieval procedure or resulting in “concealed” intrauterine bleeding at the time of embryo transfer, thereby potentially compromising IVF success." http://haveababy.com...sfunction_16-2/


  • My_time likes this

me 43, FSH 5, AMH 8.8 pmol/L is "Low Ovarian Reserve" which is 2.3 to 15.7 pmol/L

dh 41, low sperm, good for IVF

 

chance of IVF working because of age: 5% or less

 

we're taking lots of vitamins, (always did but now are taking a few different ones: InnoQnol CoQ10, PQQ, Inositol powder, baby aspirin, Prednisone (cuz i'm MTHFR I did a blood test & shows positive for blood clotting), Synthroid/Eltroxin (for my slightly elevated antibodies to thyroid I got after IVF) DHEA, Melatonin, Folapro (active form of folate), Royal Jelly, Bee Pollen, L’arginine, L’carninitine, Grape Seed, Pycnogenol, Resveratrol, Astaxanthin, NAC, Macca, E, C, D, Chinese Tea, homeopathic detox Unda numbers, weekly acupuncture, No dairy, no wheat, no sugar, everything organic I can find.


#9 My_time

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Posted 19 June 2013 - 05:37 PM

Wantingourfirst,  Dr Virro has a 6-9 months wait time. I am booked next week for a uterus biopsy to do NK testing in uterus. So it CAN be done and it is not difficult. 

 

Good luck!


  • gibasgirl likes this

Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#10 SangrealMazimur

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Posted 19 June 2013 - 07:00 PM

1) The reason for immune testing - for example:

·         repeated miscarriages 

·         repeated IVF failures

 

2) Testing done – for example:

Don't know what testing we did. I basically asked for any test they hadn't run even if I had to pay for it. So I paid for some testing. It didn't come out really bad either...nothing that raised any questions. We mostly decided the next step because I was getting pg off FET's but not keeping them. We figured it was either an egg quality issue, or immune. Intralipid was cheaper than testing out eggs so we thought we would try that route first.

3) Treatments received – for example:  

··         Intralipid

·         Other treatments (please explain) - prednisone and calcium

 

4) Outcome: did you conceive after immune treatments or not. Did you have a successful pregnancy or not. BFP, currently 6 weeks. High BETA #'s and no mid-cycle bleeding.


  • gibasgirl, My_time, Onemorego and 1 other like this

Me: 33 DH: 39
TTC: Since Valentine's day 2008
Fur Friends: Spirit , Shadow
DH and I have been together since I was 19

When we get pregnant it will be the first baby on
each side.

First IVF: Jan 2009
Protocol: Suprefact, Marvelon, Puregon, Menopur
ET: Jan 31, BETA test Feb 12 BFN
FET#1 BETA first was 53 second was 0 05/07/2010 BFN
FET#2 September 2010 -ET Sept 9 3-3day 4cell, 5cell hatched, 8cell. BETA#1 71.6 11DP3DT. m/c at 6weeks. Poor Chuck Norris and Jean Claude Van Dam...they put up a good fight.


IVF #2 April/May 2011 Suprefact, Pregon, Low Dose HCG. ER estimated for May 12/, transfered 1 beautiful blast and 1 nearly blast on May 17th. On .5 HCG every 3 days. None to freeze. Beta May 31 BFN. Sky and Walker continue to resist the Dark Side

 

IVF#3
April/May 2013 Superfact .2, Puregon 200 upped to 250, Menupur 75, HCG trigger, progesterone support, intra-lipids. 26 retrieved, 17 mature, 15 blasts (1)3AA- (14)4AD-4AA, 2 transferred on our 7th wedding anniversary. Beta: June 10th, 5 days before my birthday.

BFP!!!!!!!!!!!!!!!!!!!! at 1,111 second beta over 2,300. First u/s shows one bean just  day behind. Heart was fluttering away. Also showed a 2cm SCH. Not concerned, but told to take it easy. Continue with intra-lipids until week 22.banana.gif second u/s shows SCH is smaller. H/b at 142bpm. Third u/s shows tracking right on time, SCH gone and h/b at 166 bpm

 

Bruce Anthony Scott was born January 23, 2014 at 8:45am weighting 8 pound, 9 ounces and 21 inches long. Our hearts are bursting with love. babyboy.gif 

Lilypie First Birthday tickers

#11 Onemorego

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Posted 21 June 2013 - 10:01 AM

Hi everyone

 

In a nutshell:

 

After first m/c with fresh donor egg transfer(m/c at 5 weeks), Dr. suggests immune testing. 

Immune testing done October 2012.  Alan Beer finds I am high positive for antiphospholipid antibodies(cardiolipin), slightly elevate thyroid antibodies, ANA 1:160, boderline LADs).

Treated with synthroid, 2 LITs(great response), and lovenox start of cycle, baby aspirin

Medicated FET of 2 embryos results in another miscarriage at 6 weeks(found out after postive beta that my progesterone was very low at 12).  I had been taking 400 mg vaginal supps of progesterone and Alan Beer suggested this was insufficient.  Fertility Dr. doesn't think low progesterone caused the miscarriage but m/c was due to a failing pregnancy.  Who knows!

Chromosonal testing of DH and egg donor underway.  I am thinking I might need more aggressive immune treatment next time.  Personally don't think the sperm is the issue although DNA frag shows "fair" result. 


  • gibasgirl and My_time like this

Us:  5 year history of infertility (DOR, immune, MFI-dna frag 20%)

Me:  4 transfers (2 fresh, 2 FETs) from 2 different batches of donor eggs(very young unproven egg donor)-all early losses/chemicals.  3 of the transfers with immune treatment

Surrogate #1:  2 FETS (BFN, MMC 9 weeks-single blast split into 2)

Surrogate #2:  2 FETS (chemical, BFN)

Plan:  Starting over.  Will try a proven egg donor

Other:  DH took supps x3 months before 2nd cycle resulting in much improved fertilization rate.

Other:  3 blasts from second batch were thawed and PGD'd.  All were euploid. 

 


#12 Lisa1995

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Posted 21 June 2013 - 10:40 AM

Reason- unexplained infertility and implantation failure with IVF treatments. Started trying at 33 and never had a bfp on our own even though on paper we checked out great. 1 m/c with first IVF and then 2 more IVFs and 5 FETs with blasts and nothing to show for it (basically we had 13 blastocysts transferred over a 2 year period and none of them made it). Dr V did find and remove a small septum which may, or may not have been a problem (but I did my last FET at my old clinic AFTER he removed the septum and it was also BFN).

 

Did the full AEB testing but I had already started my IVF cycle and got my BFP before I got their final results (I had used IVIg and low dose aspirin) and once I got their test results back I added in Lovenox. I had low LADs, slightly elevated NK cells, 2 heterozygous MTHFR mutations and 2 heterozygous thrombophilia mutations (I would have to look through my paperwork for which 2 but they were the rarer ones, as I consulted with a hematologist here and she said they do not even test for those 2 in Canada). AEB told me that they also would have recommended LIT and possibly Humira for me if I had not already gone ahead and cycled. I also continued with IVIg treatments aprox every 3 weeks as my continued AEB testing kept showing I needed it. I did this up to around 30 weeks before they gave me the okay to stop. It was covered by OHIP at the time so it would not be possible to replicate this level of treatment paying out of pocket today. I was told I could stop the Lovenox around 26 weeks but continued with the low dose aspirin.

 

Successfully conceived my DD on that cycle.

 

Just tried again (but 4 years older!) and did not re-test everything (just LADS, NKs and Cytokines) and Dr V recommended LIT and possibly Humira but we decided we did not want to try Humira. We did the LIT and had a good response and IVIg and I was on Lovenox and low dose aspirin. BFN but I think I may not have hit on a good embryo this time as my response was slow and we only ended up with 3 eggs and 2 fertilized embryos so I think my odds were hurt because of that, but who knows....


  • My_time likes this

TTC #1: starting in Feb 2005 "unexplained" (immune issues, elevated NK cells, 2 heterozygous MTHFR and 2 heterozygous thrombophilias - Factor XIII and PAI-1 mutations)
me-42, DH-42, married since 1995!
Tried: Naturopath, Chinese herbs, Acupuncture, Homeopathy
4 un-medicated IUI's BFN
IVF # 1 18 eggs retrieved, 16 mature, 8 out of 16 fertilized (1/2 ICSI, half IVF), 5 made it to day 5 blast, transferred two, froze 3
first ever BFP m/c
FET #1 medicated, transferred two, started spotting 2 days later, full blown AF 5 days later (decided I don't react well to Estrace, will do natural frozen next time) BFN
FET #2 natural (but still with progesterone (crinone) support, transferred last blast from IVF #1 BFN
IVF #2 16 eggs retrieved, decided not to do ICSI this time since cycle #1 showed eggs could fertilize on their own, only 3 fertilized! None made it to blast for transfer no transfer! Disaster!
IVF #3 decided to add some repronex to the stims and do all ICSI. 18 eggs, 17 mature and 15 fertilized, 8 made it to day 5 blast. Transferred two blasts, froze 6 BFN
FET#3 added 3 HCG booster shots and doubled up on the crinone to prevent me from spotting early (as I often do), transferred 2 blasts, no spotting but a BFN anyway
FET #4- added ovidral just before my natural ovulation so they could pin point it more accurately with the 36 hour window, HCG shots again, plus double crinone BFN
January 2009 Consult with new RE in Markham - he finds a small septum, resected April 29, 09 - tells me to now try my last two frozen blasts
FET #5 - ET scheduled for June 15 (natural cycle with trigger, HCG booster and crinone) - BFN
On to Plan B- Switch clinic to Markham for
#4 Fresh IVF with IVIg, exploring immune testing - start BCP Sept 20. ER around week of Oct. 25
9 eggs retrieved, 1 immature, 1 fractured. 7 to work with. 4 out of 7 fertilized (Day 3: 1 8 cell grade 1, 2 8 cell grade 2 and 1 morula). Day 5 transferred 1 great blast and 1 morula (1 morula and 1 10 cell did not make it to freezing).
Beta Nov. 11 - BFP! (550) I am in shock!
Issues with spotting, Nov 20, second beta 11,000 and early ultrasound: saw gestational sac and yolk sac in the right place but concern about a cyst or possible ectopic near my ovary as well, 4 more ultrasounds over a 10 day period, last ultrasound on Dec. 2 'cyst' has not grown and baby measuring on target at 7wks, 1day with a heart beat of 153bpm.
Now taking Lovenox due to 2 heterozygous thrombophilias
Ultrasound on Dec. 18 (9 weeks, 5 days) baby on track, hb 167
Ultrasound on Dec. 22 due to extra heavy spotting, baby still measuring on track, hb 167 and dancing
Ultrasound on Jan. 8 (12 weeks, 5 days) baby on track, hb 160, baby doing crunches!
18 week anatomy scan scheduled for Feb. 16 - they lost my blood work for the second part of the IPS so no results for that today (they took blood again) but the 18 week scan went great, baby looked awesome and even gave us a little wave in between sucking her thumb and inspecting her toes. Yes, I said "her" - it's a little girl!
20 week ultrasound at Mt. Sinai and they agree, so far so good.
IPS results are in and they are excellent!
EDD: July 19, 2010
Baby girl arrived at 39 weeks, 2 days! July 14, 2010 3:12 am, weighing 7 pounds even.
May 2013 - The IVF Journey continues...one last try to see if a sibling is in the cards...
Did LIT, IVIg, Lovenox and low dose aspirin. 5 eggs retrieved, 1 immature, 1 fractured, 3 to work with, 2 fertilized with ICSI.
June 5, day 3 transfer of 2 8 cell grade 2 embryos.BFN
April 2014, one very last try - natural IVF with intralipids this time, 2! dominant follicles, 2 mature eggs retrieved, both fertilize with ICSI, day 3 transfer scheduled for April 13, transferred 1 8-cell grade one and 1 6-cell grade one (also using Lovenox and low dose ASA) -BFN, we are really done, not sure if it is now my immune system, or old eggs now too.


#13 My_time

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Posted 04 July 2013 - 01:40 PM

Hi everyone

 

In a nutshell:

 

After first m/c with fresh donor egg transfer(m/c at 5 weeks), Dr. suggests immune testing. 

Immune testing done October 2012.  Alan Beer finds I am high positive for antiphospholipid antibodies(cardiolipin), slightly elevate thyroid antibodies, ANA 1:160, boderline LADs).

Treated with synthroid, 2 LITs(great response), and lovenox start of cycle, baby aspirin

Medicated FET of 2 embryos results in another miscarriage at 6 weeks(found out after postive beta that my progesterone was very low at 12).  I had been taking 400 mg vaginal supps of progesterone and Alan Beer suggested this was insufficient.  Fertility Dr. doesn't think low progesterone caused the miscarriage but m/c was due to a failing pregnancy.  Who knows!

Chromosonal testing of DH and egg donor underway.  I am thinking I might need more aggressive immune treatment next time.  Personally don't think the sperm is the issue although DNA frag shows "fair" result. 

How are you doing Greta? Did the results from chromosomal testing come back? Have been thinking about you - - keep me posted!


Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#14 Onemorego

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Posted 05 July 2013 - 06:55 AM

Hi!  Sorry, I kind of dropped off for a bit there.   Haven't heard back from my RE re: results of chromosonal analysis of egg donor's blood or DH's blood.  We are hoping that means there were no issues. 

 

Called Alan Beer and they called me back(yesterday!), but I think it was because my file got accidentally put away so they felt it prudent to return my call on a holiday.  They want my LADs, cytokines and NK assay retested.  Not sure about IVIG and how many doses or if any that I would get.  They said LADs can drop off after miscarriage.  I really hope they are still high as I don't really want to have to pay for LIT again.  They will make up a treatment plan once my blood test results come in.  Likely, for the next cylcle/transfer, I will need "more meds added to my protocol" (I am thinking maybe dexamethasone-she didn't say for sure).  Oh, and closer monitoring of progesterone is something Alan Beer clinic is recommending for me also, however I know that my RE does not feel that my low levels last time had anything to do with M/C.  That's a tough one.

 

Today I got AF.  Of course, she has no problem coming right on time-exactly 25 days after my miscarriage just like she did last August after my first miscarriage.  Gotta love when your body is so regular and predicatable at all the wrong times.  Why can't it just do the right thing when I am pregnant?? 

 

My donor will be back in September to donate again(God willing).  Long story but the donation process didn't work out this most recent time-she made an honest error in her meds so will retry in September. 

 

I read Monika Schnarre's(Canadian model), story about her infertility struggles and another long story short-taking iodine drops for thyroid function helped herl  Always something to think about.  Any opinions out there re: gluten free diet and immune issues?  (slightly elevated thyroid, ANA 1:160).  Not sure if it would make any difference.


  • Highest hopes and My_time like this

Us:  5 year history of infertility (DOR, immune, MFI-dna frag 20%)

Me:  4 transfers (2 fresh, 2 FETs) from 2 different batches of donor eggs(very young unproven egg donor)-all early losses/chemicals.  3 of the transfers with immune treatment

Surrogate #1:  2 FETS (BFN, MMC 9 weeks-single blast split into 2)

Surrogate #2:  2 FETS (chemical, BFN)

Plan:  Starting over.  Will try a proven egg donor

Other:  DH took supps x3 months before 2nd cycle resulting in much improved fertilization rate.

Other:  3 blasts from second batch were thawed and PGD'd.  All were euploid. 

 


#15 My_time

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Posted 05 July 2013 - 08:55 AM

Oh Greta! I am so sorry that you are going through this and that last pregnancy didn't work and you have to now bring in your donor again and go through up and downs of it. I wish it was easier for you.

 I am rooting for you - actually for all of us. This is incredibly difficult road.


Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#16 My_time

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Posted 05 July 2013 - 08:58 AM

Oh I have also the slightly elevated thyroid, elevated anti-TPO and ANA. (Results from previous testings). I

 

Who knows if it works? Will do anything at this point. Iodine drops? Sure. Where can I get them?


Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#17 Onemorego

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Posted 05 July 2013 - 11:30 AM

Hi!

 

Thanks for your thoughts!  It's actually Dr. G at MFC that I am seeing. I have to say that although she was skeptical about my progesterone having anything to do with it(you know, the whole debate about "bad pregnancies" causing low progesterone not the other way around), she did offer to let me do the PIO(but after a long conversation about why she didn't really think it was necessary and about how painful they are I decided not to).  Let's just say after that conversation, I was convinced that 600 mg vaginally was enough.  I regret not taking the PIO now.  I appreciated her concern for me and not wanting me to go through the pain of them but as I am sure you would agree...I am am practically willing to stick needles in my eyes if it means having a healthy pregnancy.   I am definitely doing the PIO next time and I am sure she will support me in that decision.    

 

I just started taking selenium to.  And you sound just like me with the gluten free.  It is so hard.  I love a good peanut butter sandwich on whole wheat bread!  BTW, Cindy at ABC was in the office for a few hours yesterday she said.  They should all be back in today-although with it being a Friday, maybe they extended their break...


  • My_time likes this

Us:  5 year history of infertility (DOR, immune, MFI-dna frag 20%)

Me:  4 transfers (2 fresh, 2 FETs) from 2 different batches of donor eggs(very young unproven egg donor)-all early losses/chemicals.  3 of the transfers with immune treatment

Surrogate #1:  2 FETS (BFN, MMC 9 weeks-single blast split into 2)

Surrogate #2:  2 FETS (chemical, BFN)

Plan:  Starting over.  Will try a proven egg donor

Other:  DH took supps x3 months before 2nd cycle resulting in much improved fertilization rate.

Other:  3 blasts from second batch were thawed and PGD'd.  All were euploid. 

 


#18 My_time

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Posted 05 July 2013 - 11:55 AM

 I see your RE's point and agree with her that your pregnancy most likely didn't work because of other issues. But I want to tell you that I actually didn't do POI in my first IVF as I was too worried about the pain of injections (I have opened a thread here where I was debating it and then decided to not). 

The key is to warm the filled syringe before injection with heating pads for at least 3 mins. Then you have to change the needle as the needle will be too hot. Then you have to really put the syringe slowly and inject very slowly. I injected myself although the location is difficult to self inject. Then you have to put the heating pad on the injection place and make sure it is warm. Then you have to walk to make sure it is absorbed well. The injection location had dull pain after the drug was absorbed but I managed to learn to inject myself literally pain free. I am going to ask RE to put me on POI next time as I can't take chances. I just can't. You know what I mean. smile.png

 

Good luck my friend!


Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#19 Dillydally

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Posted 05 July 2013 - 12:56 PM

Hi there,

 

1) The reason for immune testing  

·         repeated IVF failures, but mostly I felt that something was wrong with implantation so I pushed really hard to get the RPL blood panel done.

 

2) Testing done

RPL initially. i got a positive result for ANA (1:160). Had the test repeated along with TSH and ovarian antibodies. Thyroid is fine, ANA came back negative but AOA came back positive (which is apparently rare).

 

3) Treatments received

I'm currently taking BCP for 6 months continuously. Then I will get to cycle with low dose prednisone.

 

 

4) Outcome: TBA. I'll keep you posted.

 

Overall, I did not find it easy to get any of these tests done. It was like pulling teeth to just get the requisition forms. I've known (gut feeling) for over 2 1/2 years that something was wrong and that is how long it took to get to this point. It can feel really disheartening, but in the end, I'm finally getting somewhere. FX that January 2014 brings me some good news:)


  • Myrtle and My_time like this

Me- 37, DH - 46
Dx: DOR

Please see my profile for prior history

 

Blood test to check for antiovarian antibodies (AOA)  in early September 2013

Follow up appointment with endocrinologist October 10th 2013 (FX AOA please be gone!)

Oct. 10th 2013 - AOA are gone!!!!

Oct. 18th 2013 - Appointment with Dr. H to review protocol

Oct. 24th 2013 - Start taking prednisone

Oct. 31st 2013 - Stop marvelon after taking 6 packs continuously (yay!!!). Happy Halloween:)

 

IVF 2.2 - November 2013

Low dose protocol with prednisone

Nov. 4th 2013 - U/S 1, all clear, start stims (150 Repronex)

Nov. 7th 2013 - U/S 2: one lonesome follie

Nov. 9th 2013 - Start Orgalutran

Nov. 11th 2013 - U/S3:

Nov. 13th 2013 - U/S4:

Nov. 14th 2013 - U/S5: 3 follies on right (18, 7 and 6 mm) and 1 follie on left (8 mm), trigger at 10 pm

Nov. 16th 2013 - ER...FX!

Nov.17th 2013 - Game over - none fertilized.

 

2014 - Taking a (permanent?) break from IVF


#20 Lisa1995

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Posted 05 July 2013 - 03:20 PM

My time and greta, I think I was told by my previous RE (and maybe read as well a few places) that the vaginal progesterone is absorbed straight into the uterus and not into the blood stream and therefore it cannot be measured with blood work but is assumed to be working... That is what I was told when I asked about having my progesterone tested in the 2ww....


  • My_time likes this

TTC #1: starting in Feb 2005 "unexplained" (immune issues, elevated NK cells, 2 heterozygous MTHFR and 2 heterozygous thrombophilias - Factor XIII and PAI-1 mutations)
me-42, DH-42, married since 1995!
Tried: Naturopath, Chinese herbs, Acupuncture, Homeopathy
4 un-medicated IUI's BFN
IVF # 1 18 eggs retrieved, 16 mature, 8 out of 16 fertilized (1/2 ICSI, half IVF), 5 made it to day 5 blast, transferred two, froze 3
first ever BFP m/c
FET #1 medicated, transferred two, started spotting 2 days later, full blown AF 5 days later (decided I don't react well to Estrace, will do natural frozen next time) BFN
FET #2 natural (but still with progesterone (crinone) support, transferred last blast from IVF #1 BFN
IVF #2 16 eggs retrieved, decided not to do ICSI this time since cycle #1 showed eggs could fertilize on their own, only 3 fertilized! None made it to blast for transfer no transfer! Disaster!
IVF #3 decided to add some repronex to the stims and do all ICSI. 18 eggs, 17 mature and 15 fertilized, 8 made it to day 5 blast. Transferred two blasts, froze 6 BFN
FET#3 added 3 HCG booster shots and doubled up on the crinone to prevent me from spotting early (as I often do), transferred 2 blasts, no spotting but a BFN anyway
FET #4- added ovidral just before my natural ovulation so they could pin point it more accurately with the 36 hour window, HCG shots again, plus double crinone BFN
January 2009 Consult with new RE in Markham - he finds a small septum, resected April 29, 09 - tells me to now try my last two frozen blasts
FET #5 - ET scheduled for June 15 (natural cycle with trigger, HCG booster and crinone) - BFN
On to Plan B- Switch clinic to Markham for
#4 Fresh IVF with IVIg, exploring immune testing - start BCP Sept 20. ER around week of Oct. 25
9 eggs retrieved, 1 immature, 1 fractured. 7 to work with. 4 out of 7 fertilized (Day 3: 1 8 cell grade 1, 2 8 cell grade 2 and 1 morula). Day 5 transferred 1 great blast and 1 morula (1 morula and 1 10 cell did not make it to freezing).
Beta Nov. 11 - BFP! (550) I am in shock!
Issues with spotting, Nov 20, second beta 11,000 and early ultrasound: saw gestational sac and yolk sac in the right place but concern about a cyst or possible ectopic near my ovary as well, 4 more ultrasounds over a 10 day period, last ultrasound on Dec. 2 'cyst' has not grown and baby measuring on target at 7wks, 1day with a heart beat of 153bpm.
Now taking Lovenox due to 2 heterozygous thrombophilias
Ultrasound on Dec. 18 (9 weeks, 5 days) baby on track, hb 167
Ultrasound on Dec. 22 due to extra heavy spotting, baby still measuring on track, hb 167 and dancing
Ultrasound on Jan. 8 (12 weeks, 5 days) baby on track, hb 160, baby doing crunches!
18 week anatomy scan scheduled for Feb. 16 - they lost my blood work for the second part of the IPS so no results for that today (they took blood again) but the 18 week scan went great, baby looked awesome and even gave us a little wave in between sucking her thumb and inspecting her toes. Yes, I said "her" - it's a little girl!
20 week ultrasound at Mt. Sinai and they agree, so far so good.
IPS results are in and they are excellent!
EDD: July 19, 2010
Baby girl arrived at 39 weeks, 2 days! July 14, 2010 3:12 am, weighing 7 pounds even.
May 2013 - The IVF Journey continues...one last try to see if a sibling is in the cards...
Did LIT, IVIg, Lovenox and low dose aspirin. 5 eggs retrieved, 1 immature, 1 fractured, 3 to work with, 2 fertilized with ICSI.
June 5, day 3 transfer of 2 8 cell grade 2 embryos.BFN
April 2014, one very last try - natural IVF with intralipids this time, 2! dominant follicles, 2 mature eggs retrieved, both fertilize with ICSI, day 3 transfer scheduled for April 13, transferred 1 8-cell grade one and 1 6-cell grade one (also using Lovenox and low dose ASA) -BFN, we are really done, not sure if it is now my immune system, or old eggs now too.


#21 My_time

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Posted 05 July 2013 - 04:37 PM

Good point Lisa! 

 

I have my immune results - not at all as bad as I expected it!!  Thanks for thinking of me. 


  • MB. likes this

Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#22 Onemorego

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Posted 06 July 2013 - 02:21 PM

Thanks for the injection tips my time. 

 

And Lisa-yes, my RE did tell me that about the progesterone supps and how they are absorbed at the uterine level and that blood levels will be lower.  On the other hand, the Alan Beer nurse said to me, "It doesn't matter how you are administering the progesterone...we need to see a certain level in the blood".  And that basically, some women don't absorb the vaginal supps as well and need to receive it by injection. 

She also commented on how "immune patients tend to have issues with low progesterone and therefore need better supplementation".    Ultimately, I ended up just doing the increase in supps and added one oral prometrium in am and pm.  Next time will take the injections just for my own piece of mind. 

 

BTW my time, your immune results are so similar to mine, except i didn't have genetic clotting issues, only acquired ones(antiphospholipids).  Interesting.  I see you want to avoid LIT.  I am feeling the same way, I think IVIG is the better bet.  My blood tests are Monday so hopefully I will get my meds letter soon after those results come back.


  • My_time likes this

Us:  5 year history of infertility (DOR, immune, MFI-dna frag 20%)

Me:  4 transfers (2 fresh, 2 FETs) from 2 different batches of donor eggs(very young unproven egg donor)-all early losses/chemicals.  3 of the transfers with immune treatment

Surrogate #1:  2 FETS (BFN, MMC 9 weeks-single blast split into 2)

Surrogate #2:  2 FETS (chemical, BFN)

Plan:  Starting over.  Will try a proven egg donor

Other:  DH took supps x3 months before 2nd cycle resulting in much improved fertilization rate.

Other:  3 blasts from second batch were thawed and PGD'd.  All were euploid. 

 


#23 My_time

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Posted 11 July 2013 - 09:10 AM

Update for anyone who might be slightest interested (I usually read old posts and I don't like it when there is no closure/outcome and I have to search the person's future posts to figure out what happened next - so I am just closing the loop here).

 

Turns out I have only small immune issues. In fact they are behaving nicely for the most parts. NK and cytokine results seem to be in the range they want them to be (why is this bothering me? NK is fixable and I was hoping to have a fixable problem). My T regs are as they should be. ANA is up but AEB center dr wasn't worried if my SSA and SSB are not raised (retesting for those). My Tcell LAD is low. He said I could do LIT. I asked if I can consider IVIG instead (to save time) and he said yes as my levels are not that low. I have hashimotos (wasn't diagnosed before) and have 4 mutations on genes that are each associated with early pregnancy losses (all not diagnosed before). That gives me a poor prognostic for future pregnancies. There is not much I can do about it. 


Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 


#24 MB.

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Posted 11 July 2013 - 10:57 AM

Update for anyone who might be slightest interested (I usually read old posts and I don't like it when there is no closure/outcome and I have to search the person's future posts to figure out what happened next - so I am just closing the loop here).

 

Turns out I don't have bad immune system. In fact they are behaving nicely for the most parts. NK and cytokine results seem to be in the range they want them to be (why is this bothering me? NK is fixable and I was hoping to have a fixable problem). My T regs are as they should be. ANA is up but AEB center dr wasn't worried if my SSA and SSB are not raised (retesting for those). My Tcell LAD is low but he didn't think it is important. He thought Bcell LAD is important and I am borderline. He said I could do LIT. I asked if I can consider IVIG instead (to save time) and he said yes as my levels are not that low. I have hashimotos (not sever) and have 4 mutations on genes that are each associated with early pregnancy losses. That gives me a poor prognostic for future pregnancies. There is not much I can do about it. We will try one more and then move on. I have started mentally getting ready to move on...

 

My_time, in my experience it is more likely that there will be a lot of little things that can add up and contribute to an unsuccessful cycle.  While you haven't found a big smoking gun answer, you have found a few other little things that could be holding you back.  Treat those, while sticking with what seemed to help before, and you will be getting closer to that bfp.  A new clinic and a few new treatment options seem like a positive step forward.


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#25 My_time

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Posted 11 July 2013 - 11:28 AM

You are absolutely right MB.

I am deflated a bit as I seem to have some genetic issues, which can't be "really" addressed. I will treat other little things and do a cycle but if that doesn't lead anywhere I may have to start getting used to the idea of not pursuing this any further as even donor egg won't help me. 

 

I am not really open to the idea of gestational surrogate due to all the complexity involved. 


Diagnosis: Repeated Pregnancy Loss + DOR + Advance maternal Age.

So far no luck with IVF attempts. Hope things take a turn soon.

 






Also tagged with one or more of these keywords: NK cells, IVIG, steroids, repeated miscarriage, Immune, reproductive immunology, Alan Beer center, AEB, ABC, antiphospholipid antibodies