What would cause very low FSH and LH

[ScoobySnacks1]

Been feeling awful for far too long - night sweats, unable to sleep, exhaustion, tinnitus… the list goes on.

So, finally braved seeing my GP this week and she sent me for a full blood work up. Everything has come back ok apart from low Vit D (which would explain quite a lot of my symptoms) and my FSH and LH are virtually non existent. The lowest my GP has seen in fact.

GP didn’t know what would be causing it, said it’s not menopause as the levels would be high, not super low. I am taking the pill which google tells me will lower those levels but can’t find anything to suggest to the extent mine are at.

Any ideas? Will be speaking to GP again tomorrow but I don’t want to be fobbed off if she still isn’t sure or just assumes it’s down to the pill.

I should add I am mid forties and have children so my levels cannot have always been this low. Last tested 6 years ago when they were normal but I don’t think I was taking the pill at that point. I also have PCOS but I haven’t had any symptoms for years really, and definitely none since I’ve been on the pill (which is at least 5yrs).

Have a look at hypopituitarism. This can cause low fsh & lh
I have a pituitary tumour (Prolactinoma which is benign) It caused super high levels of prolactin which is why I was feeling so rough. There are a few different pituitary tumours which can either secrete hormones or suppress them depending on the type. In most cases they are benign. Hormones play such a big part in how we feel. So I'm sorry you're going through this.
They did an mri of my brain to diagnose.
I would be asking for a referral to an endocrinologist.

I am thinking either pituitary issues or perimenopause. You need a scan and your estradiol (oestrogen) levels checked.

Thank you for your replies. My oestradiol levels were <92pmol but I’m not really able to find out what that figure means.

Spoke to GP again yesterday, she had to google as she said she had never seen this before and wanted to brush it off as being caused by me being small 🙄 but came back with secondary ovarian failure most likely caused by a pituitary tumour. I am having more bloods next week to check cortisol and prolactin. It’s all complicated by me being on an unusual type of contraceptive pill which contains anti-androgens (for my PCOS) which will lower FSH and LH. However, neither she nor I (in my extensive googling) can find out to what extent. My levels are virtually zero - FSH is 0.2 and LH is <0.1. I have also been referred for an MRI head.

I am pretty convinced it is all down to this pill I am on but I just need someone to say ‘yes it is!’ And that’s certainly not going to be my GP as she has literally no idea about any of this. I should add she is very experienced and usually wonderful so I do have faith in her really!

@LBF2020 can I ask what treatment you are on for yours?

@ScoobySnacks1 Even if your prolactin and cortisol come back as normal push to see an endocrinologist. Personally I went private for my first consult, which was around £150-£200. Once I had the appointment they referred me back to NHS under the same consultant. So I'm glad I did that.

My tumour is a microadenoma meaning it is small and under 1cm. As it is a 'functioning tumour' it secretes the hormone prolactin. I take a tablet twice a week called Cabergoline which keeps my hormones in check and generally makes me much happier. I have yearly mris to check it hasn't changed.

In America surgery to have pit tumours removed seems common. However, in the uk they are only removed if they are a macroadenoma (over 1cm) and causing issues (they can press on the optic nerve)

There is a Facebook group 'Pituitary tumour support & education' which I found very helpful.

Best of luck. Xx

Thank you, that’s all so helpful!

I have already considered a private referral to Endo, I actually work in that field and I know how long the wait is likely to be on the NHS! GP said I would still get a scan even if my bloods this week come back ok but I am going to push to see an endocrinologist regardless.

I’m actually more worried that I will be taken off the pill I am on as it’s been life changing for me in terms of my PCOS symptoms. These past few years have been pain free for the first time since my periods started. I’m genuinely upset at the thought of going back to all that.

I have wondered though, if this does turn out to be down to my pituitary, is this something that just randomly happens or could there have been a problem for years and years? How quickly do the tumours grow?

I think mine was caused by stress and the tumour itself certainly made me incredibly stressed! And I had symptoms for around 18 months before diagnosis. Although I don't know at what stage it it 'formed' so to speak.
As a side note.. I also have PCOS as well as endometriosis. Personally, I believe that these things are linked with my tumour. I have suffered less with the endo pain since my prolactin has been under control. So hopefully, if you can get treatment for the tumour you might not need the other meds for PCOS. Fingers crossed.
I hope your consultant can get things sorted quickly for you xx