Level 1 test results - MTHFR, TPO levels and PAI-1 Gene

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Purple286
Posts: 162
Joined: Thu Jun 04, 2020 8:45 pm

Level 1 test results - MTHFR, TPO levels and PAI-1 Gene

#1 Post by Purple286 » Sun May 02, 2021 6:28 pm

Hi all,

Not quite sure where to post this but hope some of you lovely people might be in a similar place or have been and fancy sharing your experiences.

We've done 3 fresh IVF round and all got a BFN. We're very lucky to get one frostie from the middle round, the rest got just one embryo, so wanted to do some tests before we transfer the final chance to get pregnant with my eggs.

Decided to get the Level 1 tests done expecting no major issues but to just reassure we've tried everything. 7 vials of blood and expecting to wait 6-8 weeks, 12 days later the results were uploaded to my portal!

I actually had a few negative results. I have the MTHFR gene but heterozygous so wouldn't have affected implantation but need specific prenatal vits to absorb folate. My TPO levels are high so a precursor to thyroid issues. TSH and T4 were fine in Oct but getting those checked again. Also I have a PAI-1 4g mutation so could affect blood clotting. Or that's what I believe from Dr google and forums.

They've added aspirin, prednisone and inhixa to my protocol and I'm having a medicated FET but no down reg - probably in June so have a bit of time to get myself mentally and physically prepared.

Not sure how I feel about this all? I've not really processed the results and most of these say they are really common in Europeans so I'm trying not to worry these are a big deal. I also know it's probably my eggs - I'm 39, low AMH so the chance of normal and genetically good embryos is slim. But if eliminate implantation issues then at least it makes me feel hopeful for DE which we may try if this FET doesn't work.

Anyone else find similar results and thinking about what this means. Or who has done a FET with these added in and any other side effects or things I should consider in taking prednisone and inhixa injections?

Appreciate any support or advice or hearing from others in the same situation. Thanks Purple xx
39, ttc for 4 years. Low ovarian reserve & left tube removed due to Hydrosalpinx
IVF June 20 - 2 🥚 = 1x 5 day Blast BFN
IVF Oct 20 - 4 🥚 = 1 x 5 day Blast BFN 1 x ❄️
IVF Feb 21 - 2 🥚 = 1 x 5 day Blast BFN 💔

Givingitatry
Posts: 569
Joined: Sat Oct 31, 2020 6:08 pm

Re: Level 1 test results - MTHFR, TPO levels and PAI-1 Gene

#2 Post by Givingitatry » Sun May 02, 2021 7:34 pm

Purple286 wrote:
Sun May 02, 2021 6:28 pm
Hi all,

Not quite sure where to post this but hope some of you lovely people might be in a similar place or have been and fancy sharing your experiences.

We've done 3 fresh IVF round and all got a BFN. We're very lucky to get one frostie from the middle round, the rest got just one embryo, so wanted to do some tests before we transfer the final chance to get pregnant with my eggs.

Decided to get the Level 1 tests done expecting no major issues but to just reassure we've tried everything. 7 vials of blood and expecting to wait 6-8 weeks, 12 days later the results were uploaded to my portal!

I actually had a few negative results. I have the MTHFR gene but heterozygous so wouldn't have affected implantation but need specific prenatal vits to absorb folate. My TPO levels are high so a precursor to thyroid issues. TSH and T4 were fine in Oct but getting those checked again. Also I have a PAI-1 4g mutation so could affect blood clotting. Or that's what I believe from Dr google and forums.

They've added aspirin, prednisone and inhixa to my protocol and I'm having a medicated FET but no down reg - probably in June so have a bit of time to get myself mentally and physically prepared.

Not sure how I feel about this all? I've not really processed the results and most of these say they are really common in Europeans so I'm trying not to worry these are a big deal. I also know it's probably my eggs - I'm 39, low AMH so the chance of normal and genetically good embryos is slim. But if eliminate implantation issues then at least it makes me feel hopeful for DE which we may try if this FET doesn't work.

Anyone else find similar results and thinking about what this means. Or who has done a FET with these added in and any other side effects or things I should consider in taking prednisone and inhixa injections?

Appreciate any support or advice or hearing from others in the same situation. Thanks Purple xx
Hi Purple286, sorry to hear your Feb cycle didn’t work out but good to see you have some ideas from the level 1 tests that may help implantation. Between my Oct/Nov cycle and now (I’m starting my immune FET from Wed as currently on down reg), I did l1 and l2 testing and will be doing a FET cycle with aspirin/inhixa, steroids and intralipids (the latter being due to abnormal NK and T cell activity). I can’t say how it will go but over the next 3 weeks I’m happy to share how I’m finding it? I’ve been on steroids a number of times before and find them ok but you do tend to retain a bit of water, feel a bit hungrier, can feel a little more moody and can struggle more with sleep so best to take in the morning. Inhixa wise, it goes into the tummy and can sting a bit apparently and you need to press down a little on the injection site to help reduce bruising, like with a blood test but nothing else really apparently. I do my other injections in the thigh as find it much easier so not too happy with a tummy one 😂

It’s hard to know what to do sometimes but the way we see it is we can’t conceive naturally for whatever reason so trying something different is our best option. So we are following the protocol and hoping for the best. I’m 35 going on 36 so egg quality is likely diminishing but AMH is good for age. We had to do ICSI as my husband had a lower sperm count on the day of transfer but apparently it’s average on count but good on motility and morphology etc. It’s possible we have issues with the eggs and sperm but having tried for 3 years, I think implantation is an issue and I do pass clots with my monthly period. My bet is it’s the clotting that is causing issues first and foremost but only a guess!

Hope that gives you a view on things and more than happy to share more when I can x
35 (DH 39), TTC 3 years, unexplained infertility
Oct/Nov 20 - ICSI fresh cycle (long protocol) - 2x day 5 blastocysts - BFN, 4 frosties
L1/2 tests - abnormal clotting, NK and T cells
April 21 - immune FET cycle (ET 21/5)

Purple286
Posts: 162
Joined: Thu Jun 04, 2020 8:45 pm

Re: Level 1 test results - MTHFR, TPO levels and PAI-1 Gene

#3 Post by Purple286 » Mon May 03, 2021 3:36 pm

Hey!

We were cycling together in Oct/Nov! Oh glad you got those results and have some answers. I'm trying to work out if we should have the level 2 as well considering the results we have about the TPO which is effectively an immune issue.

Thank for the tip about the steroids. Will def do them in the morning and look forward to being more moody. I'm glad that I went for the non - down reg as that on top of the buserelin side effects would not be fun! I also do thigh injections and find I can't do them myself in the belly 🤦🏻‍♀️ have to have my OH do them!

How's your round going so far? Really hope that the extra drugs will be what's needed for you and you'll get the BFP. Wishing you all the best and might see you in the cycle buddies group when I start! Xxx
39, ttc for 4 years. Low ovarian reserve & left tube removed due to Hydrosalpinx
IVF June 20 - 2 🥚 = 1x 5 day Blast BFN
IVF Oct 20 - 4 🥚 = 1 x 5 day Blast BFN 1 x ❄️
IVF Feb 21 - 2 🥚 = 1 x 5 day Blast BFN 💔

Givingitatry
Posts: 569
Joined: Sat Oct 31, 2020 6:08 pm

Re: Level 1 test results - MTHFR, TPO levels and PAI-1 Gene

#4 Post by Givingitatry » Mon May 03, 2021 6:34 pm

Purple286 wrote:
Mon May 03, 2021 3:36 pm
Hey!

We were cycling together in Oct/Nov! Oh glad you got those results and have some answers. I'm trying to work out if we should have the level 2 as well considering the results we have about the TPO which is effectively an immune issue.

Thank for the tip about the steroids. Will def do them in the morning and look forward to being more moody. I'm glad that I went for the non - down reg as that on top of the buserelin side effects would not be fun! I also do thigh injections and find I can't do them myself in the belly 🤦🏻‍♀️ have to have my OH do them!

How's your round going so far? Really hope that the extra drugs will be what's needed for you and you'll get the BFP. Wishing you all the best and might see you in the cycle buddies group when I start! Xxx
We were cycling together and looks like we are going to be again 🙂 small world on these boards isn’t it 😉 I thought we might have been which is why I mentioned when I was last cycling but sometimes I feel I’m going mad and misremembering!

Sounds sensible to get OH to do the injections. I’ll let you know how the intralipids in the tummy are but I’m not expecting flowers and rainbows 😂 I’m not on lubion though so means I’m pretty much one injection at a time 🙂 I’ve never had an option not to downreg so been enjoying the 2.5 weeks of buserelin and vivid dreams etc but I’ll be on oestrogen from Wednesday all being well!

Without knowing about doses etc, the only difference for your protocol if the l2 came back positive is adding an intralipid infusion pre transfer and then more if you get a BFP. So for the cost of the l2, I guess it’d be interesting to see if they would add it without the test to avoid you paying for it. The intralipids are a red of the HFEA anyway as it’s all very experimental or lacking the larger robust studies. We only did the two together because I suffer with high immune responses as have hayfever, eczema and unexplained allergies despite tests. So not a far stretch to think I’m hypersensitive to allergens and foreign bodies.

My cycle is going ok so far but I’m starting to feel more apprehensive about the more intense protocol and intralipids. I don’t know what to expect but hoping in about 4/5 weeks from now we will have our BFP and be thankful it all worked out. Definitely join our cycle buddies group when you’re ready. Ladies are on their getting ready to start as well as already started x
35 (DH 39), TTC 3 years, unexplained infertility
Oct/Nov 20 - ICSI fresh cycle (long protocol) - 2x day 5 blastocysts - BFN, 4 frosties
L1/2 tests - abnormal clotting, NK and T cells
April 21 - immune FET cycle (ET 21/5)

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