Worrying test results & a rant

[CarlottaD27]

I’m about to start IVF and just has my day 3 tests repeated - came back as through the roof AMH (115 pmol) and high estradiol (397). My latest ultra sound also showed signs of polycycstic ovaries (>40 AFC)

I was told in January my AMH was low at 6 and my AFC was 14… my AFC then came up as 40 on a test a few months ago, so I’m worried that it’s been getting higher and a quick Google (I know I shouldn’t have!) said it could be a hormone secreting granulosa tumour.

I know I’m probably overthinking but I just can’t work out what’s going on with my body and it’s making me desperately frustrated!

Have been calling the Dr at the clinic and asked for a follow up asap.

Just posting here as I feel desperately worried about my body and unable to concentrate on much else until I get some answers. Going through this feels so cruel and unfair. I just want a baby and I hate this uncertainty and feeling that life is on hold.

I have only been in this journey a year so I hope I don’t offend women who suffered much longer than i have, I truly have huge respect for you all xxx

[JA-fnuk Partner Nurse Fertility Network UK]

Hope you have people around you for support Take a breath And do not go down the Google rabbit hole !Hope the clinic get back to you asp and help put your mind at rest

Thinking of you

Janet- Partner

[CarlottaD27 in reply to JA-fnuk]

Thank you! I know Google and forums won’t be able to give me the answers I need so I’m hoping the Drs get back asap! X

[Twiglet2]

hi 👋🏼 try not to stress it’s good that you have had the repeat tests and now things can get looked into more with your doctor (you are right to keep on at them for a follow up!) high AMH result can also be linked with PCOS too so if they found other evidence of that your consultant may wish to discuss next steps on that with you as it can change the next steps or the protocols used etc. I hope you get some answers very soon 🤗 xx

[CarlottaD27 in reply to Twiglet2]

Hello! Thanks for much for your reply. Not worrying is easier said than done isn’t it … Just hoping a Dr will get back to me soon as my mind goes to bad places on its own. I had heard about the link to PCOS although the high estradiol seemed incongruent with that … but to be honest I’d much rather have a form of PCO than a tumour or anything worse, so that wouldn’t be an awful outcome! X

[Eloquentia]

Hi! I have high AMH and PCOS. The two go hand in hand. It is not ideal but also not terrible in IVF terms. On the positive side, they collected lots of eggs after a short protocol (24 in total, 18 mature). On the negative, you at a higher risk of OHSS and might need to do a freeze all. I have had PCOS all my life and no consultant has ever mentioned that it puts you at a higher risk of tumours. Very best of luck with the next round!

[CarlottaD27 in reply to Eloquentia]

Hello! Thank you for getting back to me I did wonder if it was a form of PCO (although I’ve always had very short regular cycles and no other symptoms so never really considered it!)

If you don’t mind me asking, did you also have high oestradionl / estrogen levels ? That’s the only bit that seemed a bit incongruous with PCO(S) for me and I know is associated with a tumours. I really hope I’m over worrying and the explaination is PCOS as that would make sense and I’d welcome a decent egg collection like you (as we plan to bank and test) X

[Eloquentia in reply to CarlottaD27]

I didn't have PCOS symptoms either beyond painful periods (quite regular and no missed ones otherwise) but knew about the PCOS from scans. My clinic didn't test my estrogen levels, just the AMH, so the honest answer is: I don't know. But I do know that polycystic ovaries produce extra hormones due to the extra follicles, so I wouldn't be surprised if one of these is estrogen. Good luck with the banking and if you do get diagnosed with PCOS, drink protein shakes/eat protein yoghurts during stimulations - they help reduce the risk of and manage the symptoms of OHSS. xx

[CarlottaD27 in reply to Eloquentia]

Thank you so much for that advice! I managed to speak to a Dr this morning who did think the high AMH was likely due to the large number of antral follicles. He did refer me to have blood tests for tumour markers too as he noted the jumps in AMH on tests was very odd. I’ve got to wait about a month for the tests and results which feels agonising, but I’m hoping it turns out to be PCOS rather than a tumour so we can get going with collections! (And hope to minimise OHSS) x

[Eloquentia in reply to CarlottaD27]

Sounds like you are on top of it. All fingers crossed for good news! xx