SOS- Feedback on our treatment and diagnosis needed — The Bump
Infertility

SOS- Feedback on our treatment and diagnosis needed

Hello, I need feedback. I'm 42 and the DW is 35: we live in a South East Asian country. I'm American and DW is a local. We spent 2017 TTC naturally and in 2018 we did 3 failed rounds of IUI.

  1. Have we been given a correct diagnosis, considering the information belo
  2. Have we been given adequate tests?
  3. Should we do another round of IUI, considering that I have lost 33lbs and I am now taking Clomid and Arimidex – which require 3-6 months to take effect in men?
  4. What is our current probability of conception on IUI vs IVF?

DW stats:

4 years ago she had a ruptured ovarian cyst removed via surgery, no problems since. Our fertility clinic has given her a physical exam and an U/S. She was given 1 blood test before 1st IUI: we were never shown the results, nor were they explained to us. No additional blood tests. In all three rounds of IUI she took Clomid and had 3-4 eggs present. During the 3rd round, the Dr. said that 1 ovary was not producing eggs. She won't explain why or suggest treatment for it.

My Stats:

I was obese, but I have lost 33lbs in the past 11 weeks: now overweight- working on it. The clinic did 1 semen analysis before 1st IUI, no additional tests during our 2nd and 3rd IUI. Original results: low morphology and low total concentration:sperm morphology 2% by KSC, total concentration 15.6 M/ml. The Dr. will not discuss possible causes of this or treatment. She has not done any blood tests on me, nor have I been given a physical exam. I can't find a qualified western trained urologist or endocrinologist.

I decided to get my own blood tests at a private lab: 4 months ago my Testosterone was 501. After weight loss, it shot to 764, on 11/03/18. After that, I decided to go on Clomid. On 11/17/18, my T went over 1,000! However, my Estrodial levels were above normal for men. So, I decided to put myself on Arimidex. In this country, you can get almost any medication without a prescription. Yesterday, I did another blood test: My T is over 1500 and my E has leveled off to normal. Essentially, I am engaging in medical experimentation on myself, due to a lack of information coming from our Dr.

Our Dr:

I don't trust her. I don't like her. I believe she does not like me. She has us wait 1-2 hours for every appointment. She only gives us 10-15 minutes face time per visit. While she can speak English well, she spends most of the time speaking the local language with DW, who also speaks English well. Whenever I ask questions, Dr. deflects them or changes the subject. The culture here is that you never question a Dr. However, I expect a Dr. to give me their best hypothesis, tell me what would falsify it, what the evidence is to support it, what competing hypotheses there are and why they reject them. Any decent mechanic does that, why can't an educated Dr.? She diagnosed us with unexplained infertility, but will not explain why.

She is now hard selling the wife into IVF without explaining why. All expenses are OOP. Doing 1 round of IVF will put us in debt. Doing 2-3 would ruin us financially. The other clinic in country is beyond our price range. We could go to better clinics in a neighboring country, but we would burn through savings and I would have to quit my job. They won't give me that much time off.

Meanwhile, DW is desperate to have a kid. In fact, so are MIL, SILs, my mother, my sisters and all of our female coworkers. The failed 3rd IUI has taken a toll: DW oscillates between wanting to give up and wanting to do IVF. I am worried this infertility issue will become a festering wound in our otherwise happy marriage.


Thanks,




Re: SOS- Feedback on our treatment and diagnosis needed

  • New data,

    We just got results back from blood work done on DW. Her Estradiol, FSH, LH, Progesterone, Prolactin and Testosterone are all in normal parameters for a 35 year old woman.

    Not sure where to go from here.
  • I’m sorry you’re going through this. I’m no medical professional. However, do you know your wife’s antral follicle count?  This is usually done at the beginning of a cycle to see how many follicles she starts with. It seems like she’s responding alright to clomid. Also, you may want to get a new semen analysis to see if the meds have helped. Your number may have improved.  Also, women’s egg quality starts decreasing at 35. She may not have as many good eggs as when she was younger. So, that and the three failed iui’s may be why the RE is pushing for ivf. That’s fairly standard in the US after three unsuccessful iui’s.  

    I’m sorry the RE is difficult to deal with. It is hard enough going through this with an doctor who’ll explain what’s going on and that you trust. If you were in the US, I’d suggest finding another one. As far as traveling to another one, it’s mostly your wife that would need to be able to travel. Would that be possible?  Something to think about. 
    Me:32 DH:36
    Me: DOR, poor egg quality, MTHFR
    DH: MFI
    TTC since 3/2014
    2015: 3 IUI's-BFN
    12/2015: 1st IVF cycle-(9 follicles retrieved, 5 mature, 3 fertilized w/ICSI, transferred 1 excellent and 1 good embryo on day 3)-chemical pregnancy
    3/2016: 2nd IVF cycle- canceled (3 follicles retrieved, 3 mature, all fertilized w/ICSI, 1 fragmented, 2 arrested) 
    3/2016: RE suggested donor eggs- taking an ivf break and to supplement 
    9/2016: 3rd ivf cycle-cancelled due to early ovulation
    Oct./Nov 2016: 4th ivf cycle- EPP-AFC:5, retrieved 10, 10 mature, 8 fertilized with ICSI, 6 blastocysts biopsied and frozen. 3 CCS normal embryos
    1/9/17: transferred 1 embryo-BFP 1/16
    1/18/17: beta #1-104
    1/20/17: beta #2-174
    2/2/17: first u/s, heartbeat of 107 at 6w1d
    7/20/17: baby boy born at 30+3 via emergency c-section 


  • Did they draw AMH for your wife? That's pretty standard in the US as part of an infertility panel -- it's usually judged along with the antral follicle count (AFC) and the FSH. A low number with abnormal AFC and high FSH is usually a sign of poor ovarian reserve which typically means she doesn't respond as well to the standard levels of medicine. It can give you a clue how likely IVF is to work.

    You might want to consider traveling for IF treatment if that's possible -- if you do consider doing IVF, you really want a clinic you can trust. There are many clinics that treat international patients both in the US and abroad that have very good reputations. You could always do a skype consult or something like that first to make a decision. Unfortunately IF treatment is often 50 percent science, 50 percent luck so it's hard to say what even having a real diagnosis might do for your protocols or odds. It is very important to have faith in your physician, so that's my issue with your situation -- I would have trouble having faith in your doctor in your position as well, given your story. 
    ~~ Our Story in Spoiler! TW loss/child~~
    Fall 2012 -- started TTC
    Summer 2015 - no BFP yet, labs normal, referred to RE
    Fall 2015 - Summer 2016 - Further testing all normal. 3 IUI's -- BFN. Recommended move to IVF. Planned cycle for fall 2016.
    September 2016 - Surprise natural BFP. MMC @ 8 weeks. RE expressed confidence that we just needed the 'right' embryo.
    Fall 2016 - Spring 2017 -- Break from TTC
    June 2017 - Started IVF; egg retrieval for freeze all cycle. 9 mature eggs retrieved, 5 fertilized. 2 4BB embies on ice.
    August 2017 - FET transfer both embies. BFP.  Twin pregnancy confirmed by ultrasound. EDD 4/28/18
    September 2017 - Twin B stopped developing; Twin A doing perfectly! Graduated from RE @ 10 weeks
    March 2018 - Baby Girl born via C/S due to pre-eclampsia -- strong and healthy!


    callingthestork
  • guyinseaguyinsea member
    First Comment Photogenic
    edited December 2018
    Hey kp214 and mbradfo2,

    Thanks for the responses. I'm sorry for not getting back sooner: we were waiting for data and a bit busy with the holiday season.

    Anyway, I have some new data to update our case. DW got her original blood test results from the clinic.

    Prolactine -DW Value: 22.52 ng/ml

    • (Normal value: 4.79-23.3)

    TSH -DW Value:1.85 mIU/l

    • (Normal value: 0.47-4.64)

    FSH -DW Value: 9.36 mIU/ml

    • (Follicular phase: 3.5-12)
    • (Ovulation Phase: 4.7-21.5)
    • (Luteal Phase: 1.7-7.7)
    • (Postmenopause: 25.8-134.8)

    LH -DW Value: 9.46 mIU/ml

    • (Follicular phase: 2.4-12.6)
    • (Ovulation Phase: 14-95.6)
    • (Luteal Phase: 1.5-11.4)
    • (Postmenopause: 7.7-58)

    Estradiol -DW Value: 78.57 pg/ml

    • (Follicular phase: 12-166)
    • (Ovulation Phase: 86-498)
    • (Luteal Phase: 44-211)
    • (Postmenopause: <54.7)

    Progesterone -DW Value: 0.098 ng/ml

    • (Follicular phase: 0.2-1.5)
    • (Ovulation Phase: 0.8-3)
    • (Luteal Phase: 1.7-27)
    • (Postmenopause: <0.8)

    AMH -DW Value: 1.66 ng/ml

    • (Normal value: 2.0-6.8)

    The results seem to be that the progesterone and AMH are way too low. So now some questions:

    • What can we infer from this data?
    • Can these 2 areas be improved? If so, how?
    • Given the low progesterone and AMH, does the diagnosis of unexplained IF still hold?
    • Given the low progesterone and AMH, is there something we should be doing/not doing?
    • Is IUI still a viable option?
    • Can anyone give me a ballpark estimate on probability of conception given these numbers?
    • We are going to get an antral follicle count (AFC) test. Are there other tests that we should consider?

    Thanks,



  • Low progesterone is typically aided through supplements during the luteal phase (after trigger or transfer to support the embryo).   AMH is also something that can fluctuate and the ladies on this board have mentioned that vitamin D can be a factor so vitamin D supplements may help.

    HOWEVER -- Her AMH value isn't incredibly low and the FSH is normal so I think most doctors would be hesitant to base any diagnosis on that -- and the AFC is still unknown (if AFC is low too, you might consider a dx like diminished ovarian reserve). I'm assuming the progesterone value is for the follicular phase so there is the possibility of a luteal phase defect (the luteal phase isn't long enough to support embryo implantation and development due to insufficient progesterone). Once again, supplements are used to treat this. Most patients will have supplementation for progesterone during cycles due to low levels or medicated cycles, and whether the treatment is insemination or IVF. It's pretty standard - I had suppositories for my 3 IUI cycles and injections for IVF. 

    That being said, low AMH is typically most successfully handled with successive cycles of IVF since the low value can predict poor response to stims -- but it depends on the patient. I just found out that my AMH had dropped to 0.62 prior to my IVF cycle in 2017 and it was still successful -- 9 mature eggs, 2 embryos and 1 take-home baby. I was pretty darn lucky though!

    I think the AFC is going to be an important number here so I would hold off on any predictions or recommendations until you get that -- but it's always good to take a vitamin D supplement if she's low on vit D and other vitamins that can help -- coQ10 and DHEA are often used alongside prenatals. Some studies suggest long term use of coQ10 can improve egg quality and other studies have linked DHEA to enhanced fertility. Your clinic should be able to give you dosages or you can look it up on google. 
    ~~ Our Story in Spoiler! TW loss/child~~
    Fall 2012 -- started TTC
    Summer 2015 - no BFP yet, labs normal, referred to RE
    Fall 2015 - Summer 2016 - Further testing all normal. 3 IUI's -- BFN. Recommended move to IVF. Planned cycle for fall 2016.
    September 2016 - Surprise natural BFP. MMC @ 8 weeks. RE expressed confidence that we just needed the 'right' embryo.
    Fall 2016 - Spring 2017 -- Break from TTC
    June 2017 - Started IVF; egg retrieval for freeze all cycle. 9 mature eggs retrieved, 5 fertilized. 2 4BB embies on ice.
    August 2017 - FET transfer both embies. BFP.  Twin pregnancy confirmed by ultrasound. EDD 4/28/18
    September 2017 - Twin B stopped developing; Twin A doing perfectly! Graduated from RE @ 10 weeks
    March 2018 - Baby Girl born via C/S due to pre-eclampsia -- strong and healthy!


  • @guyinsea I have one more advice for you on top of everything that you already got from the lovely ladies on here! 
    I don't know if I just did not read close enough, but has your wife ever done a hysterosalpingography (HSG) test done? It is a test for tube blockage and it is a must! Especially with a history of any kind of other gynecological issues such as ruptured cysts. I would recommend getting it done for a peace of mind. And if there is a blockage you will have your diagnosis. And it is not safe to do another IUI in a situation like that. 
    Good luck with everything! IF is really hard but once you succeed it is all worth it! We struggled for 3.5 years and now I have a 9 day old baby boy at home!  I wish you all the luck
    Me 30, DH 39
    TTC since Aug 2015, 
    BFP Apr 2017 - late diagnosed EP, right tube removed, left tube scarred.
    Dx: tubal IF
    IVF Sept 2017, 7 R, 6M, 6F- 4 blasts, 1 transferred fresh - CP
    FET #1 Dec 2017- BFN
    FET #2 Jan 2018- CP
    FET #3 BFP!!! EDD 12/15/2018!
  • hi @guyinsea, sorry to read about your poor doctor interactions... going through this process is taxing enough, i can only imagine the frustration of not having your questions answered.

    i think most of the ladies have made possible predictions for you based on your wife's blood test results. i think your initial question was it advisable to continue with IUI or move to IVF.  given that only one of your wife's ovaries appears to be producing follicles added to your low morphology, i think that puts your chances at pretty slim from conceiving via IUI -- certainly not impossible, but low odds. 

    are your IUIs covered by insurance or are they out of pocket?  we had 6 covered by insurance, but only did three b/c it was becoming too taxing trying month after month with no progress. given that your wife has had about 3-4 follicles on clomid alone, i'd guess she'll probably respond well to injectables.  i only ever produced one follicle on clomid (even though I have PCOS and had a high AFC), but responded decently well to injectables (10 follicles, 8 mature, 7 fertilized, 6 made it to blast). if you do continue IUIs, i would ask to get progesterone supplements (oral or suppository) after the insemination... as @mbradfo2 mentioned, low progesterone can be treated and can help maintain lining after ovulation.

    i understand the financial costs for moving to IVF, but there are things that could treat some of the current issues. for example, ICSI will help bring the sperm directly to the egg for fertilization. additionally, it's typical to get further hormone treatment after IVF.  as mentioned, it's no guarantee and you'd be lucky if everything "worked" on the first retreival/transfer... but it could still continue to be more testing and trial/error even after retrieving eggs.  i believe i've seen grants/scholarships hosted by foundations for families who can't afford IVF. i don't know if there are such foundations that sponsor couples in the country where you live.

    is it even possible to transfer to another doctor in your current practice? 
    me: 37 dh: 42; TTC since Jan 2016
    dx: PCOS, low progesterone; 2 MMC
    Sept FET 2018 Spreadsheet
    3 failed IUIs (clomid + ovidrel), unresponsive to femara
    Jan 2 2018 - 1st IVF cycle - 9 retrieved, 7 mature/fertilized, 1 5d transfer + 5 untested snowbabies
    Jan 19 2018 - Fresh Transfer #1 one 5dt; BFP 1/25/2018; EDD 10/7/2018; MMC at 8w3d; D&C 3/6/2018
    May 16 2018 - FET #1 one 5dt; BFP with 4 betas (6.5, 24.3, 165.5, 2250) - EDD 2/1/2019; MMC at 6w; D&C 6/20/18
    Sept 17 2018 - FET #2 one 5dt; BFP 38.9 7dpt, 167 9dpt - EDD 6/5/2019  
    (3 untested embryos remain)


  • guyinseaguyinsea member
    First Comment Photogenic
    edited January 3
    Hey ladies, thanks for all the great replies and information. I am sorry I have not gotten back to you sooner. We were really busy with the holidays and we went to Thailand for a 2nd opinion.

    Update:
    Last week, DW and I went to to the Phyathai 2 international hospital (Assisted Reproductive Center) in Thailand for a second opinion. (I will make another post later providing a detail review of the clinic.)

    WOW! I am so glad we went to Thailand. We brought all of our medical records with us. We asked the Thai RE to review the records, run his own tests and then give his diagnosis and suggested treatment. Amazingly, he showed that our Cambodian RE's diagnosis was completely wrong. Based on the original Cambodian tests, we had 2 problems: endometriosis and poor sperm quality. It was not unexplained at all. It was shocking to see how on the Cambodian test results it showed endometriosis, but our Cambodian RE never even mentioned it to us.

    Anyway, the Thai clinic ran their own tests. The results were mixed. It was clear that the wife has endometriosis. However, my sperm analysis came back completely normal. (I will make another post to provide details of what I did to improve my SA.)

    He suggested the following treatment. First, he wants DW to take oral contraceptives for 2-3 months in order to treat the endometriosis. Second, he wants to go directly to IVF. He said that 3 failed rounds of IUI coupled with endometriosis means that IUI is very unlikely to be effective for us.

    So, the good news is that we got a clear diagnosis and found a great RE. The bad news is we are still grappling with the financial side of IF.

    Cheers,
Sign In or Register to comment.
Choose Another Board
Search Boards