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Confused about POF diagnosis. Should I go back to GP?

(17 Posts)
nuckyscarnation Thu 17-Oct-19 20:30:06

I’ll try to keep it brief...

Started ttc in 2016 aged 36. Nothing happened for a year. My FSH was measured at 9.5, but upon referral for tests it was discovered my AMH was only 1.8sad I was put forward for IVF in 2017 and at start of process my FSH was measured at 7.5. However the hospital did a third FSH test (not on day three of period as before, but just on a random day) My FSH came back at 45! I was told I had POF and that egg donation was my best chance of success. The hospital refused to continue with my IVF treatment as they said it wouldn’t work. I was also told to consider HRT as I was going through menopause.

I did conceive naturally in June 2017 but mc at six weeks. A subsequent hystereoscopy revealed my womb was that scarred with dead tissue that I was told implantation would have been impossible.

In 2018 I went abroad for ED IVF and was lucky enough to be successful first time. My periods were always irregular from coming off the pill in 2016, but they came back in July (I’m still breastfeeding) They’ve been fairly regular since returning.

I’ve been worrying a lot about the possible complications of early menopause so visited my GP last month to discuss HRT. She said she would have to measure my FSH again before prescribing me anything. It was taken on day three of my period and came back at 3.7!

I really don’t know what to do. From the way medical professionals spoke to me while ttc I didn’t even think I’d still be having periods now. I’m still really worried about my health and I’m so confused as to what is going on with my body. Would it be worth going back to GP to have blood test repeated? She told me she wouldn’t need to see my again if my FSH was in normal range, but I honestly didn’t think that it would be.

Well done if you’ve managed to get this farflowers

bubbaflash Fri 18-Oct-19 07:49:14

It doesn't sound like you have POF. FSH is only reliable day 2-4 testing, so why on earth the clinic checked it on a random day is a shock.

I would certainly doubt that diagnosis. have you had AMH tested?

nuckyscarnation Fri 18-Oct-19 08:37:55

@bubbaflash The clinics argument was that as it was 45 there is no way an FSH reading can be that high without the patient being in menopause. I was confused as to why they just checked it on a random day.

My amh was 1.8 in 2017. I do have very low ovarian reserve. The clinic we went to for our egg donation confirmed that was the case and also agreed that ED was my best chance of becoming a mother. They didn’t retest my FSH though as it wasn’t required for ED IVF.

I think I might go back to the GP and ask for a second blood test. I’m so confused as obviously being diagnosed with POF was utterly devastating and if I’ve been misdiagnosed I’ll be utterly furious!

flomp Fri 18-Oct-19 09:17:15

Fsh is only interpretable in early cycle. You don’t have POF with a level of 3.7. Amh is only useful when going down the assisted conception route as it predicts how you will respond to the stimulation drugs. It cannot be used to predict menopause timing or fertility per se.

nuckyscarnation Fri 18-Oct-19 11:14:18

@flomp I was really shocked that my level came back at 3.7! My NHS clinic were so adamant that I had POF and that doing IVF was pointless. If it turns out they were wrong I’m seriously considering a complaint against them. The emotional trauma of it had been horrific.

Do you think I need another FSH reading done by GP? I feel like I need it confirming 100% one way or the other.

nuckyscarnation Fri 18-Oct-19 11:15:34

Plus I conceived (although admittedly miscarried) a month after I was told by the hospital I had POF!

EarlGreyT Fri 18-Oct-19 11:37:25

It doesn't sound like you have POF. FSH is only reliable day 2-4 testing, so why on earth the clinic checked it on a random day is a shock.

Having an FSH of 45 (or in fact >30) at any time in the cycle is a good indication of POF as it’s so abnormally high. For an accurate assessment of ovarian reserve, it needs to be done day 2-5 but a level of 45 at any point is well within the menopausal range and the day of the cycle is irrelevant.

EarlGreyT Fri 18-Oct-19 11:41:38

The clinics argument was that as it was 45 there is no way an FSH reading can be that high without the patient being in menopause.
They’re correct. The problem with FSH is it isn’t a perfect test. If you’re perimenopausal FSH can fluctuate a lot and at random. Although your recent FSH hasn’t suggested you’re the reading of 45 definitely does as although levels can fluctuate you’d never expect them to be that high unless you’re perimenopausal/menopausal.

EarlGreyT Fri 18-Oct-19 11:44:49

But it is worth seeing if you can get it repeated. I’d also ask for an oestradiol level to be checked as well.
www.nice.org.uk/guidance/ng23/ifp/chapter/Premature-menopause-premature-ovarian-insufficiency

Pognut Fri 18-Oct-19 16:44:57

I very much hope that you don't have POF, and yes, you should definitely ask to see an expert (i.e. not a GP). It's possible, with POF, for your levels to be normal one month and seriously post-menopausal a few months later, but unfortunately most GPs don't have a clue about it and don't know that it quite often doesn't behave like normal menopause. It may be that you do have it, but you need to see a POF specialist to get a clear answer and a treatment plan if you need to be on HRT to protect heart and bones etc.

I had an AFC of 2 and undetectable levels of AMH back in 2012 (at 34), but my FSH and LH were only at the high end of normal. I was getting regular, normal periods until very recently. I've had FSH results of 78 and 11 taken on the same day within months of each other. I would strongly advise you to ask to see a POF specialist and to contact the Daisy Network (https://www.daisynetwork.org/), who run a support and information service for women with POF and are brilliant. Fingers crossed that you don't have it, but if you do, you need to know how to handle it and it sounds as though (like me!) you've been left totally in the dark about it all...

nuckyscarnation Fri 18-Oct-19 23:31:03

@EarlGreyT @Pognut I’ve made an appointment to go back and see my GP. My concern is that she told me of my reading came back normal then I didn’t need to go back, but the NICE guidelines clearly state two blood samples are required. I’m going to ask to be referred as I am really worried about my health. I don’t have any menopausal symptoms but who knows when that might change?

I’ll look at the daisy Network as wellsmile

I’d already made my peace with my diagnosis, so if it turns out to be accurate then emotionally I will be OK. Of course I would love a biological child but I realise how incredibly lucky I am to have my twins.

Thank you so much for your advicesmile

EarlGreyT Sat 19-Oct-19 13:05:46

@nuckyscarnation
I agree I think you should request a referral whatever your bloods show. If the 2nd test suggests POF you need to see someone and if it is normal then you could argue your diagnosis is in doubt in which case you also need to see someone as the previous FSH of 45 is definitely consistent with POF so you should get some advice from a specialist about the next steps and whether they would refer you for a bone density scan and consider HRT to protect your bones etc.

hoping2018 Sun 20-Oct-19 16:04:06

I agree with earl grey any fsh that high regardless of point in the cycle suggest POF and fsh can fluctuate a lot around the menopause. Menopause can last many years for people though, it’s not necessarily a discrete event lasting one year for example and it’s not unusual to ovulate. In all likelihood you would be a poor responder to ivf though as your body is obviously has chaotic fsh levels - and ivf effectively mimics fsh to make you ovulate.

I also agree asking your GP for a referral sounds sensible - you are young, potentially looking at hrt and osteoporosis prevention meds and you haven’t had straight forward/clear cut results. Hopefully seeing a gynaecologist would give you the answers you need and confidence in management.

Finally re:fsh mine was 11.8 age 30 and the gynaecologist said there was no point in rechecking it - he said they always take your highest reading as the true reading. Even if he’d retested it and gotten a lower number I’d still be considered to have reduced ovarian reserve as it should never be that high. And for me to qualify for nhs ivf fsh has to be <12 so we never rechecked!!! So the fact yours went so high at any point in your cycle I think is probably diagnostic of POF.

Good luck

Lauren83 Sun 20-Oct-19 19:57:27

I was also diagnosed with POF at 28, FSH of 30 and AMH 2, I had own egg IVF but then they withdrew funding so switched to donor eggs, I had a stint on HRT as recommended by an endocrinologist, not as they said I was menopausal just they said it would put me in the best position for IVF, I had a baby from donor eggs then caught naturally when he was 8 month's. I did actually have a journalist mither me asking me to do an article on clinics misdiagnosing people but I don't think they did as no one stated menopause just that my ovaries were failing which they were

nuckyscarnation Sun 20-Oct-19 20:19:06

Thank you @hoping2018 and @EarlGreyT for your advice. I really appreciate it.

Would it automatically be a gynaecologist I was referred to? I’m feeling so anxious about what my GP will say. Her attitude at my first appointment was basically that everything is fine unless my reading came back over 30. I’m really worried about my health and scared she’ll try and fob me off.

@Lauren83 You got pregnant naturally after having your ED baby? Wow that is amazing. That would be a dream come true for me. I know it won’t happen but it’s so hard to come to terms with never having a biological child. I love my twins more than anything in this world but the pain never really goes away...

Lauren83 Sun 20-Oct-19 20:51:19

Thankyou, my first born was actually from a clinic abroad too, he was from cycle 5 so had given up hope of having one baby never mind two! I only have one tube which makes it even stranger that it happened, there's 17 months between them. Luckily we were open about DE as DS1 is olive skinned with brown eyes like the Greek donor and DS is fair skinned with blue eyes like me. My FSH did come down to 8 a couple of years ago however like PP said you really need to go off your worst FSH, it makes treatment harder having a high FSH as if you have low AMH you usually need an aggressive stimulation but as the IVF meds are FSH if your body is kicking loads out itself struggling to ovulate you likely won't respond to meds

nuckyscarnation Sun 20-Oct-19 23:12:55

Five cycles? Wow, that must have been so tough. What an amazing end result though. I’m so happy for yousmile

I’m not planning anymore IVF. I don’t have the money for own egg now anyway. We went straight to DE because I just wanted the best chance of having a baby. We still have four Frosties at our clinic, but I don’t think we’ll be going back. DH is adamant that two are enough and he’s probably rightgrin

Thank you so much for sharing your story though. It’s such a fab one!

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