Extremely worried - FSH and LH levels

[BlueVelvet94]

I was wondering if anyone could provide some insight on FSH and LH. I am extremely worried and upset and would be grateful for any help. I am a 29 year old female and I was diagnosed with PCOS back in August 2017 (due to an enlarged right ovary on a scan coupled with hair loss, some acne, facial hair and slightly more body hair). In May 2018, I was finally diagnosed with endometriosis following lap surgery. The endometriosis was extensive in the pelvic region but was not in the ovaries or fallopian tube.

I have been using the combined pill along with spironolactone since August 2017 to December 2023. I stopped the combined pill as it gave me headaches, a scan from a neurologist showed no tumours or growths in the brain. I tried the progesterone only pill for 3 months this year, it is called Slynd. I stopped that as it gave me terrible pain and bloating.

Whilst on Slynd, I undertook a full set of bloods. The FSH was an alarming 72.5 and the LH, 22.6. I am worried to death. I saw my endocrinologist who had the results in hand and he didn’t provide any comment. I emailed him back and I’m now seeing him urgently within a space of 3 days.

My GP has tried to reassure me and stated that Slynd can distort readings and that it’s best to wait 1 whole cycle before doing another set of bloods, and then do another set of bloods a month later to rule out perimenopause. I have been incredibly upset and on the spur of the moment, spoke with a private GP who said ‘you don’t have PCOS, you had perimenopause since being a teenager, but I guess we will never properly know.’ This has truly broken me.

I checked my FSH and LH levels from reports dated 2017 and they were not high. I’m not sure what to make of all this. If anyone has any insight that would be amazing. This sounds like a sob story j know, but it’s really a dream of mine to have my own children and that’s why I’ve spent many years on trying to save enough money to enjoy life a little bit as a potential new mum. I’m just so very lost and broken.

[MrsPaddingtonBear]

Hello

Ok so first, sit down, breathe, close your eyes and give yourself a mental hug. It’s great your consultant seems to have listened and made you an appointment. It could be false readings from the medication, medication can be a pain this way. Your consultant could start again with blood tests and go from there. Be assured you are being cared for by this consultant who seems to be listening. Be gentle with yourself take each day at a time until you get to the bottom of this. Your stronger than you can imagine, you will get there. Best of luck

[BlueVelvet94 in reply to MrsPaddingtonBear]

Hello,

I'm very sorry for the late reply. It has been a week of highs and lows, and when the lows hit, I unfortunately find myself sleeping the days away to try and not think of the worst case scenario. I really appreciate your caring message, it was really nice to read. I saw the consultant again, and I'm trying my hardest to trust the process and not think of the worst. I'm very grateful for your support, it means a lot - it is really quite hard to discuss these things when your family members and friends cannot relate. I hope you have a good weekend. Thank you

[Lily1986]

Hey, im so sorry you’re going through this and it most definitely isn’t a sob story. The desire to have children is incredibly strong in most women and having that ability snatched away from you with no choice is beyond devastating. It’s taken me a long time to accept I never will and it still truly hurts, always will.

My FSH levels are similar to yours and LH 40 and I’m 37 with only one remaining ovary due to severe endo and that ovary has now apparently failed. 18 months ago my blood results were normal with high oestrogen.

Are you still having periods?

some pain killers can effect cycle a lot too and is listed as a side effect. I was not having periods at all when on one medication and when I came off they returned fortnightly (annoyingly didn’t have blood tested at this point). Since I’ve been put on a different pain killer periods stopped again. Could well just be a coincidence who won’t know until I’m in a position to stop again.

Have you been referred to a fertility specialist? I would get their opinion. Another important fertility test which you can have done quickly and privately yourself is AMH, the result from this will give you a strong indication of your fertility. NHS don’t usually do this test it costs about £70-80 but it’s important.

Unfortunately when I had my AMH done 6 years ago it was very low, so the chances are I am definitely in natural menopause and just in denial about it hence the pain killer theory.

Sorry I’ve gone on a bit there and hope it makes sense.

Best wishes to you and feel free to message me anytime ❤️

[BlueVelvet94 in reply to Lily1986]

Hi Lily1986,

I'm very sorry for the late reply, this week has been filled with highs and lows and when the lows hit, I find myself sleeping the days away to avoid thinking about the worst. I really do appreciate you taking the time to respond to my message, and share your experience - it really does mean a lot so thank you for taking the time to do this for me. Please know that you have not 'gone on a bit' at all, thank you again for sharing your experience with me.

In terms of my periods, I have been on the combined pill from 2017-2023 (I did have a regular withdrawal bleed). I stopped the combined pill due to headaches and risk of strokes. I was not on any form of contraception for Jan and Feb this year, and I had a period during both months. I started the mini pill in March, I bled in March but had no bleed in April and May. I had a withdrawal bleed when I stopped the mini pill at the end of May. I'm currently not allowed to take any form of contraception due to the fertility testing, but I have been advised that I do need to taking something once testing ends so the endometriosis is controlled. It is a catch 22 situation as in the background, I know I'm not on any medication to control the endo which could also affect/further affect my fertility.

Because of the PCOS, endo and now unfortunate fertility concerns, I have booked in private appointments. I am getting a second opinion on my PCOS care (I appreciate the consultant is now doing everything he can to help me, and I do trust his approach but I guess it is just me being overly worried). I did try to go for an internal exam this week to check my endo, but sadly could not tolerate the scan. The sonographer was also not personable and that made the whole experience worse. I am trying to get this done next week instead. My endocrinology consultant has recently done an AMH blood test, I'm really hoping and praying that it turns out okay.

I'm sorry if this is unhelpful, but I just wanted to ask you if you are open to looking into your endo and fertility again (apologies, I know the suggestion could be really unhelpful and totally out of place but I was just thinking that if I think the doctors that I will be seeing are good, perhaps they could help in giving a second opinion or perspective if you feel comfortable that they are right for you- please do ignore me if this isn't helpful at all).

If it is okay, I'd be really grateful to message again and will try my best to keep my replies shorter! Thank you xx