A Diagnosis? Sort-of…

As I write this, I am two tests away from a complete RPL work-up (according to my RE Dr. N). This is what I’ve had done (please note that my lab values normals are according to the Kaiser Lab and my RE). I have loosely grouped the tests below based in my understanding of them.

Genetic:
Chromosomal analysis on myself (normal)
Cystic fibrosis carrier (negative)
Chromosomal analysis on my husband (normal)

Clotting issues:
Lupus Anticoagulant (negative)
Cardiolipin Antibody (negative)
PT/APTT (13.3/30.1seconds, normal)
Factor V Leiden and prothrombin mutation (negative)
Homocysteine (5.7, normal)
Beta 2 glycoprotein IGG, IGM, IGA (all <9, normal)

Hormonal:
Testosterone (19, normal)
Hemoglobin A1C (5.1%, normal)
Fasting Glucose (83, normal)
Thyroperoxidase antibody (27, WNL)
TSH (2.11, my RE wants <2.5)
Prolactin (12, normal)
Vitamin D (25, normal)
AMH (1.24, low, want >2)
FSH (13, high, want <10)
Estradiol (<50, normal)
LH (3.6, normal)

My husband and I are taking a 10 day course of Doxycycline just in case there is an infectious component to our losses.

These are the two tests I have left to do:

Progesterone level at 7 DPO
Saline Infusion Sonohystogram (SIS) to evaluate for fibrosis and polyps

After I ovulate this month I’ll do the progesterone and I’ll be doing the SIS hopefully next month (there were no openings this month and the test apparently has to be done after your period stops but before CD 12…obnoxiously short window). Hopefully these will be normal. I will update once I have those test results.

So, what does my RE have to say about all this? Basically, he thinks the reason for my miscarriages is due to poor egg quality. Since my AMH and FSH are abnormal, my ovarian reserve is low and my egg quality is on the poor side. His exact words are: “When the [AMH] level is between 1 and 2, this shows egg quality is starting to change. It’s what we call the “gray zone”. It’s not bad, but makes it harder to conceive. Once the level drops under 1, we know that the number of quality eggs remaining are much lower. It is harder to conceive and we tend to see more miscarriages.” And “Your FSH of 13 is high (over 10), showing hormonal evidence of ovarian aging.” His recommendation is to start taking 75 mg/day of DHEA since research shows this helps improve egg quality and reduce the risk of miscarriage.

Of course I was freaking out and immediately asked him if we should proceed directly to IVF because I would really like to have a child that is genetically mine. He, however, says “Since you are still young, I think your egg quality is better than the AMH level.” I guess he thinks we should be ok with these numbers, but only time will tell.

I visited an acupuncturist recommended to me by co-workers who gave me some dietary tips, supplements, and will start my treatments next week. He does not think the DHEA is necessary at this time but did not tell me to stop it since my doctor told me to take it. He does not think my AMH is too terrible but is hoping to work to lower my FSH and my TSH. His plan is to relax me and increase blood flow to my uterus and ovaries in hopes to improve my egg quality and help with implantation.

My plan is as follows for the next 3 months (we will still continue to try naturally as I make these changes): DHEA per my RE, Co-q 10, vitamin e, vitamin c, prenatal vitamins, b-complex vitamins per the book “It Starts With The Egg”, and 81mg aspirin, diet changes, and acupuncture per my acupuncturist. I am also continuing to exercise. At the end of three months I will ask for a repeat of my AMH and CD 3 FSH/LH/estradiol to see if there are any changes. As long as they are not worse, I will probably continue on this supplement regime as we keep trying naturally. If the numbers are worse, I am going to start exploring the idea of IVF with PGS. I may also start exploring the use of medicated cycles to maybe try and ovulate more than one egg to increase our monthly chances but from what I am reading, using these types of medications is not great for people with increased FSH (since my ovaries are already working harder to ovulate each month). That’s something I will need to discuss more in depth with Dr. N after three months. If we do happen to conceive, we will see what happens and if we have another miscarriage I will strongly consider proceeding to IVF (my hubby isn’t wild about this option).

My long term plan if I cannot successfully have a baby is to do donor eggs, so at least my husband can have a biological child. I would still like to be pregnant/breastfeed if possible.

Obviously this could all change but it’s the plan for the moment.

I’m not sure how I feel about all this. I was convinced that something was wrong, but I was not expecting it to be ovarian reserve or egg quality because I am still relatively young (32 next month). Also, it really does feel like a “sort of” diagnosis since I’m getting pregnant. And I’m not wild about my TSH. I wish I could convince my doctor to treat it as I think it could only help. But it’s not my realm of expertise. I’ve done a ton of reading and it seems like there is a chance we will be able to have a baby, it will just take longer. Honestly, being well versed in medical crap is more like a curse because I can’t just listen to the doctor. I’m constantly researching and asking questions but if there is anything I’ve learned in my nursing career it’s that you have to be your own advocate in the health care world or you will never get what you want or need.

Any thoughts? Or any suggestions? Or can anyone point me in the direction of bloggers with a similar problem?

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11 thoughts on “A Diagnosis? Sort-of…

  1. EmilyMaine

    I was going to suggest the book you have already read. I pretty much took the same supplements as you. I also do acupuncture weekly and that should help with your levels. My acupuncturist has had a lot of success with improving follicle numbers in women with low ovarian reserve so I think it is a great thing to do. Obviously in the end for me it was the enometriosis which was silent which means there was never any physical indication of it. Before removal it was screwing with my egg quality resulting in 2 chemical pregnancies early on and them abnormal embryos during IVF. You really do need to be your own advocate so I think you are doing the right thing. I think the 3 month test period is a great next step. Good luck. X

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    1. RJ Post author

      Thanks! I am rooting so hard for you! Also, your recent post that touched on silent endometriosis has my wheels turning. I’ll be asking my RE about it. Hope you’re doing well.

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  2. Recurrently Unlucky

    It’s nice to have a plan on how to move forward. I’m sorry the results weren’t quite what you’re expecting, but I think with the supplements and acupuncture you have good chances of improving your eggs quality, so it may be just what you need. I certainly hope so.

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  3. mamajo23

    I have low ovarian reserve and am relatively young (34). My level was .7 though so we went straight to IVF to have my son. My only advice would be to seek one more opinion. Perhaps you can set up a phone consult with CCRM ( top clinic in Colorado). Your plan sounds great but I think it is smart early on to be really thorough and have a number of opinions weighing in. Good luck!

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    1. RJ Post author

      Thank you for the encouragement to get a second opinion. I’m looking into that now. I think you’re right that an early second opinion is key! Thanks for your reply!

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  4. libraryowl33

    My AMH is 0.7 and my FSH is 13.83. According to my Dr while this means I have less eggs than someone my age (33) without these issues, but that these aren’t an indicator of egg quality. So, for me it’s been reassuring to just think that I have less eggs, but those that I do have are just fine. I’ve just finished my second round of mini/micro IVF, but have yet to do a transfer. My RE recommends this for patients with AMH/FSH issues, because we tend to be low responders to traditional IVF. I have one embryo on ice and am waiting to hear how the 3 from this round do. I should be doing a frozen embryo transfer in December. Don’t give up hope. You have a diagnosis, which takes you out of the category of unexplained infertility, so your RE should be able to come up with a plan customized for you. I think there is still a great chance that you’ll have your genetic child.

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    1. RJ Post author

      Thank you for your reply. You make a good point to be out of the unexplained category. It’s also comforting to hear someone else say it’s a quantity, not quality issue. I’m really hoping that’s the case and it’s just been bad luck that all the eggs we’ve caught have been poor ones. I’m going to mention to my RE about mini IVF. Good luck with you’re upcoming transfer. I’ll be cheering you on as I follow 🙂

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  5. Isabelle

    I don’t think your AMH is too low and your FSH is too high. Both are doable. But yeah at your young age they’d like to see better numbers. What you have in your advantage is your age. Egg quality is often determined by your age. I think that IVF is a very good next step for you. I’ve seen plenty of people with your numbers get pregnant eventually and stay pregnant. What is your antral follicle count?

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  6. RJ Post author

    I hope they are not too bad…perhaps why Dr. ML doesn’t quite agree with the DOR diagnosis. My AFC was 6 on the right and maybe 1 on the left, but the left side had a 28mm cyst on I both times this has been investigated (I’m pretty sure the cyst has been there since June 2015, based on an US I had back then). So we are hoping that there will be more follicles with eggs when we get to the stims. We shall see!

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