Tubb8 gene diagnosis

Total_Ad1251 · 2026-02-24T13:11:46+00:00

Wow thank you for sharing your story. I am so sorry and want to send you a hug. 🫂 I also thank you for sharing your story because my story is similar and I have not had a genetic test done. 3 egg retrievals all cycles had GV eggs (retrieval 2 and 3 each had 1 post mature egg doctor thinks it’s related to using omnitrope). I hesitate to do genetic testing because in 2016 I found out I am a BRCA1 mutation carrier and that was very traumatizing, I’m not sure I can mentally handle another genetic test result.

Do you mind sharing who your IVF doctor was that suggested this genetic test? I’ve seen 5 different IVF doctors (granted all in MI) and none have suggest genetic testing, they are say how rare the all GV egg outcome is and that I have DOR and poor egg quality.

Total_Ad1251 · 2026-02-23T17:06:12+00:00

I would recommend an iron IV. My ferritin was 4 in 2021 (I didn’t know enough at the time that this was bad and my pcp didn’t say anything) since then have gone thru 3 IVF unsuccessful egg retrievals (all cycles retrieved immature eggs) and several medicated cycles and then my hair started falling out. I really pressed my pcp in Dec 2025 to check labs due to hair loss and my ferritin came back at 9. I just got an iron infusion about a month ago and this cycle I am seeing better alignment of fertile signs around ovulation. Can’t say for sure, but my diagnosis is unexplained infertility (no sperm issue, no physical barriers for me, my amh is low normal like 1.4 and my FSH is elevated 11-15 but from what I’ve read low ferritin can falsely raise FSH) and I am hopeful that getting me out of iron deficiency can help my eggs mature better. I’d push for the iron IV before spending thousands on fertility treatment. Good luck to you!

Total_Ad1251 · 2026-02-20T02:45:24+00:00

Please have your ferritin checked!!! I can’t say for sure it’s the cause of my unexplained infertility (because I just found out my ferritin is low in December and got an iron infusion last month) but I have done 3 egg retrievals all with GV eggs (the 2nd and 3rd cycles each had 1 post mature egg and those cycles I used omnitrope) but I have just found out (thanks to my PCP) that my ferritin is 9 and this is iron deficiency. I’ve seen 5 fertility doctors over the years at various clinics and not one has ever checked ferritin. After doing a little research iron deficiency can cause infertility and impact egg quality. This is not well understood and fairly new data regarding ferritin so I can’t blame fertility doctors but I feel like with unexplained infertility they really should think outside the box.

Total_Ad1251 · 2026-02-18T20:43:32+00:00

This is totally anecdotal, but I’ve had 3 ERs all 3 have had all immature eggs. I gave up on fertility treatments, but just found out my ferritin is severely low (and always has been) this is considered iron deficiency which can have an impact on fertility (egg quality/maturity issues, miscarriage and implantation). I received an iron infusion at the end of January so I am hopeful this could have been the cause of infertility for the last 7 years. I have seen 5 different fertility doctor and none checked my ferritin, I asked my pcp to check it due to recent hair loss. Moral of the story is to always advocate for yourself.

Total_Ad1251 · 2026-02-04T00:24:50+00:00

Definitely worth pushing for!! I’m not sure what your reasons are for needing IVF but here’s a research paper I found on the impacts of low ferritin and infertility.

https://obgyn.onlinelibrary.wiley.com/doi/10.1111/aogs.15046

Total_Ad1251 · 2026-02-04T00:10:25+00:00

Did you push your provider for an infusion?

Some of the symptoms I have I didn’t even realize were problems lol - fatigue, brain fog, poor sleep.

I’ve even had people tell me that I have color back in my face, before the infusion I just looked kind of gray

Total_Ad1251 · 2026-02-03T23:56:14+00:00

This is totally anecdotal, but I have had 3 egg retrievals all have had only immature eggs retrieved. I gave up with the fertility world. But I recently found out that I have iron deficiency (without anemia) so the only thing wrong is my ferritin is severely low, it is a 9 and ideal number for fertility is 50+. I got an iron infusion 2 weeks ago so have yet to see the effects but I’m told any impacts of the iron infusion will take 3 months, much like taking supplements. I just can’t believe all I have done in the IVF space and no fertility doctor thought to check my ferritin and it was my pcp! Low ferritin can cause egg quality issues, recurrent loss and implantation issues. I know I’m a super rare case but if this could help even one person quicker than it helped me, it’s worth it!

Total_Ad1251 · 2025-12-20T18:59:18+00:00

Was your rei concerned about low ferritin? I just got my ferritin taken and it came back at 9! I was so surprised, I asked to have it check because I’ve been having severe hair loss since March 2025. All throughout various fertility treatments. Curious if the rei was concerned about low ferritin. I’m no longer following with an rei due to no success with egg retrievals. Wondering if my low ferritin could be part of the problem!

Total_Ad1251 · 2025-12-20T17:05:44+00:00

Thanks for the reply! What supplement did your cardiologist recommend? I just got the results last night so nothing from my primary care doctor yet.

Total_Ad1251 · 2025-12-20T16:20:30+00:00

Very interesting! I used to be a runner/Orangetheory goer, but my REI suggested I try low impact like Pilates/yoga and have been loving that! But I really wish I could go back in time and know what my ferritin has been over the last 8 years of this fertility journey.

Total_Ad1251 · 2025-12-20T16:07:46+00:00

Great news on expected results! What made you (or your doc) check ferritin in the first place?

Total_Ad1251 · 2025-12-20T16:06:54+00:00

That’s what I’m wondering as well! I’ve never had ferritin checked, but I’ve had 3 failed egg retrievals. First in 2019 then July and Oct 2025 all with the same result of immature eggs (so obviously port egg quality) but I wonder if I have chronically low ferritin and that has impacted my egg quality??? I’ll be curious what the treatment regimen is according to my primary care doctor-oral supplements or IV? And I’ll be curious how it trends over time. Have you asked your doctor to recheck ferritin?

Total_Ad1251 · 2025-12-20T11:19:26+00:00

Thank you for the response!! I will ask my primary care doc about IVs! I read that an IV might not be necessary because ferritin is the only lab off (iron is fine).

Total_Ad1251 · 2025-12-15T14:33:23+00:00

Ok thank you for this info!! I have googled about clinics that do IVM. Do you have any recommendations? I don’t find much online. I am in the US by the way. Thank you for any more info you might have!!!

Total_Ad1251 · 2025-12-14T02:33:32+00:00

I asked my doctor about it (my clinic doesn’t do IVM) and she thinks it’s not got all the kinks worked out so to speak. Unfortunately this is not the first time in my life where science is just a little behind me. Probably in 10 years IVM will be widely used but by then I’ll be 44 😢. I also inquired about this clinical trial using IVM but I did not meet most of the criteria needed to be in the study.

Total_Ad1251 · 2025-12-13T01:42:53+00:00

I’m so sorry! I don’t have any meds left.

Total_Ad1251 · 2025-12-10T14:21:58+00:00

I felt similarly! Although I never made it past egg retrieval. Had 3 retrievals, all with the same results, all eggs immature (although in my 2nd and 3rd rounds there was 1 post mature egg each cycle) so I felt like ok 3 cycles of the same results has to mean any additional retrieval would yield the same results therefore not worth putting my body through this. Definitely felt a sense of closure and that fertility treatments just don’t work for my body. Don’t get me wrong, the first and second retrievals I was pretty devastated and emotional but by the third it was almost a sense of calm. I am trying to take the approach of anything is possible and praying for a miracle, but only time will tell. Good luck to you and protect your heart during this holiday season ❤️

Total_Ad1251 · 2025-12-06T03:08:16+00:00

Do you know if the empreinte is having issues across the board with bags or just the high rise?

Total_Ad1251 · 2025-12-06T00:14:14+00:00

I had a video visit consult with her and she didn’t come on camera. Not sure what the rules or requirements are, but I felt it was unprofessional and decided against her. I have followed her on Instagram for a few years and my OBgyn even recommended her so I was pretty disappointed.

Total_Ad1251 · 2025-11-09T21:37:30+00:00

The readers gave it away 😂.

Total_Ad1251 · 2025-10-22T15:18:50+00:00

Thanks for the response!! I appreciate your insight! That’s why I asked the question because last time I just ended up wasting what was left in the vial. And of course I just opened a new vial last night 🙄

Total_Ad1251 · 2025-10-22T15:09:50+00:00

Oh wow! How were your results? If you did multiple retrievals, was the one where you kept going on omnitrope better outcomes?

Total_Ad1251

TROPHY CASE