FSH - vague doctor

[lilypotter88]

Hi everyone,

Went to see my GP for blood results last night after struggling TTC. She said it looks like PCOS and that I have high FSH levels which worried her.

She said I need to have my bloods done again and an ultrasound.

I asked what the worse case scenario was and didn't really get an answer. I am wondering if anyone can shed any light or has had a similar experience?

Of course I've googled but some of it is quite scary!

Hope everyone is doing ok xxx

[lilypotter88]

Bump

[GeekyBlinders]

High FSH can mean you aren’t ovulating, or that you’re entering the perimenopause. Usually they’d want to test you a couple of times over the stretch of a month, as FSH can fluctuate. I’m not sure how this fits with PCOS though, I’m afraid.

[Harveyrabbit76]

I was diagnosed with high FSH which meant that I struggled to ovulate and underwent IVF which was a waste of time as I had so few eggs. I ended up getting pregnant naturally but it was a hard slog. I took a few supplements which I think helped if useful? I suppose what I am trying to say is that even if the news seems bad there may always be light!

[hoping2018]

Do you know what your number is?

If it's >9.5 you should meet the criteria for early referral for ivf. Mine was 11.8 aged 32 - my GP had coded it as normal and it was just because I asked for a copy of my results that I realised it was abnormal. I ended up emailing the GP guidelines and we were referred straight away for IVF and she wrote me an apology letter. We were listed for IVF that month (also male factor infertility)

High FSH does not mean you don't ovulate - I ovulate like clockwork on day 14 every month! It just means you possibly have reduced ovarian reserve so if you end up with IVF you may not get as many eggs and may need more drugs.

Saying that - it is not very accurate and you need an antral follicle count and an AMH blood test doing (both done by the fertility clinic) to properly assess ovarian reserve. Despite my high FSH and equally bad AMH my antral follicle count was good and I got 20 eggs on cycle 1 and 22 on cycle 2 despite them reducing the drugs! The best test of how many eggs you have is being given the IVF drugs.

Finally I'd just say unfortunately time is not on your side so don't let your GP waste a month repeating the test - get them to refer you ASAP. Even if your FSH when repeated is lower clinics always go with our highest.

Good luck!

[lilypotter88]

No she didn't tell me my number, to be honest I was so overwhelmed with all the information I didn't even process it all until today. She's referring me in for an ultrasound and if that shows I've got PCOS she said she will then send me in for fertility treatment. I'm just extremely confused, I guess I need to find out what my number is in the first instance and go from there.

Thanks all for your replies. I've had a right good cry about it all today so reading that there could be light at the end of the tunnel is helpful xx

[Harveyrabbit76]

I have been there and it's really hard news to take in so I feel for you. How are your periods? Keep positive but also chase for the ultrasound

[lilypotter88]

Periods are really regular! Think that's why this has come as such a shock.

Thank you xx

[hoping2018]

@lilypotter88 , find out the number and if >9.5 insist on referral. The article I found is gponline written by dr David walker - emailed GP that and she referred that day.

I am currently 11 weeks pregnant via IVF - there's still hope xx

[LeeMiller]

I can't comment on the PCOS but high FSH in itself doesn't necessarily mean problems, although it can be devastating to hear. There was a US study last year that found ovarian reserve testing (both FSH and AMH) is a very poor indictor of your chance of conceiving: www.sciencedaily.com/releases/2017/10/171010124105.htm

I conceived naturally despite repeated results showing FSH level in the teens once a separate issue (low progesterone) was addressed.

[Harveyrabbit76]

I also believe that that FSH and AMH numbers can be misleading. I had an FSH of 17 plus an AMH of 0.75, I was told that I had less than 5% conceiving and that I also had less than a year as I had so few eggs. This was by my IVF clinic 4-5 years ago, who also wanted me to go straight to donor eggs. I had 3 really poor cycles before I gave up.
I have since become pregnant naturally 3 times, I lost the first due to seperate issues but twice since then! Honestly, we thought I had no chance.
I also had horrific womb scarring caused by Ashermans Syndrome, after I had an op to clear that, then I became pregnant.
So please do not give up, wallow for a few days and then continue to think positively because if I can do it then I believe everyone has a chance!!
I took high Vit D, royal jelly, Coenzyme Q10 ubq., DIM plus and a few other bits, I researched everything :-)) PM me if you need anything and let me know how you get on x

[lilypotter88]

Thank you all so much, I've had a really rubbish week and genuinely feel much better reading your messages - will keep you updated xxxxx

[AD1986]

Hi all

Sorry I appreciate these posts are from some time ago. But I'm 34 and have fsh levels of 11.8

Doctor seems to think they're fine as my progesterone levels are good. Also the fact I concieved in October (ended in a chemical pregnancy) she won't refer me to a ferilty clinic.

Wondering how you all got on.
@harveyrabbit76 it would be great to hear what else you did do get pregnant. You've given me some hope xxx

[RiverRiot]

Hi @AD1986 I’ve just come across this thread. Was your FSH test taken on day 3 of your cycle?

If so do NOT be fobbed off by your GP. I’m currently in a battle with mine as they refuse to believe anything below 12.5 is a problem despite that fact that I was told by a fertility specialist anything above 10 is a cause for concern.

I’m not saying this to worry you, it’s just that GPs don’t know their arse from their elbow when it comes to fertility so do push for a referral (or get the FSH done again on day 3 if this was done later in your cycle).

Elevated FSH doesn’t mean you can’t get pregnant naturally or via IVF but it just needs looking into. You’d need to have the AMH blood test and follicle count scan to give you a clearer picture of your ovarian reserve.

I’ve seen a lady on here who had a FSH of around 17 and AMH of 1 and got pregnant naturally (I think with twins too!) so it does absolutely happen.

And you may be pleasantly surprised, as I was, to find that your AMH and AFC are fine. You’re also young so your egg quality is likely to be good too.

Good luck.

[AD1986]

@RiverRiot Thank you for your message. Sorry you're going through this with your GP too! Completely agree, they're useless. I've had 3 losses and it was struggle to get referred to a recurrent miscarriage clinic. I have an appt for March so will bring it up then if the GP doesn't refer me.

Thanks for the honesty, is the concern not being able to get pregnant or have ivf? I've read that some clinics don't accept anyone above 10 😪
I did my test on day 4 so I dont think it will make a big difference? I'm so scared that it won't happen for me. Everyone around me keeps saying not to stress as it will make it worse.

I'll def get the tests you mentioned, hopefully that won't take long.

Hope it all goes well for you too! Xx

[RiverRiot]

@AD1986 I’m so sorry for your losses!

No the concern may (and it is a may be not a definite!) that you have a slightly lower number of eggs than someone else of your age. But this doesn’t mean you can’t conceive and carry to term whether that be naturally or via IVF. Many women can and do go on to have children.

I completely understand how scared you must be. I was in bits after my first fertility phone call, and friends and family who haven’t been through this struggle find it hard to empathise sometimes, but honestly all is not lost.

Can I ask how soon after your loss you had the test? Because it can take your body a little while to recover and so give misleading results. If this is the case, I’d start by having the day 3 tests done again.

Sending virtual hugs. xx

[AD1986]

@RiverRiot Thank you. :)

For some background, I had an ectopic pregnancy Jan 2020 which resulted in a lost tube, a chemical loss in May and November. My period came back very shortly after the loss in November, so not sure about how quick my levels got back to normal.

Hopefully ill get some answers in March.

How you getting on? No-one said it would be this difficult! Xxx

[RiverRiot]

Oh @AD1986 I’m sorry you’ve been through all that!

I tell me about it! 3 years TTC for us which seems like a lifetime but then I know others have a much longer struggle.

As I say, I had quite an upsetting call regarding my FSH a few months ago but since then I’ve had the AMH and AFC and both came back normal/good for my age and as far as I understand these are more reliable so this is why I’m saying for you not to worry just yet.

I do have to have repeat day 3, I assume to double check the FSH, and hopefully its lower but the Drs don’t seem overly concerned right now.

It sounds as though you may well have had the test a little early then if that was November time.

Hope your appointment goes well in March and you get some answers.

Good luck and take care of yourself. xx

[AD1986]

@RiverRiot Thank you so much!!
Hope you are keeping well - take care :)

[Harveyrabbit76]

[quote AD1986]@RiverRiot Thank you so much!!
Hope you are keeping well - take care :)[/quote]
Hi AD1986, so sorry this is an old thread but only just remembered that I needed to reply! Hopefully you don't need any advice now .
I took high Vit D, royal jelly, Coenzyme Q10 ubq., DIM plus, plus I also took DHEA which some studies show help with egg health. I knew that I did not have many eggs so the ones I did have I had to make the best of. I also cut out sugar and lost a bit of weight and I think that helped.
My ivf's were just a complete washout but I managed to get pregnant naturally and now have 2 children. Because I lost the first, I had to have a cervical stitch and take progesterone. How are your levels once pregnant?
So, you do have a chance with low FSH but I think you have to work slightly harder at it. Its really frustrating when you watch everyone just fall pregnant really easily!
Also, to be quite frank, in order to become pregnant I realised I needed to have sex the night before ovulation and not get up. Happened with both pregnancies. So get an ovulation tracker if you haven't.
I really wish you and everyone else struggling the best of luck as I struggled for years and its the worst feeling, one that others don't understand xx