I am 32 years old, I have lupus nephritis and recently discovered that I have low AMH
- First test I did with a healthcare company who provides general health checks was 0.195pmol/l
- Second test I did with my fertility clinic came back at 2.6 pmol/l
I had 6 follicles the last time I was scanned.
I suffer from proteinuria because of my lupus so I can’t get pregnant until this improves, when it does I then I need to change medication and be off my current medication for 3 months so I am going down the route of freezing embryos until such time (as per my Nephrology Dr I hopefully should be ready by middle of 2024!)
When speaking to my fertility consultant she made me feel like I could have no eggs by next year so I have been very stressed as I know women with low AMH tend to retrieve less eggs. I also have the added complication of my lupus as it means I have to wait to try any embryos I manage to freeze which puts additional pressure on how many I get! I also don’t want to physically stress my body out with back to back cycles.
Would like to hear of other people’s experience of dealing with time pressure and if anyone also has lupus it would be great to hear about it, I don’t know any other people with lupus, let alone those with lupus also having ivf!
Have a great day and thanks for reading 😊
Written by
Namiri-Plains
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Hi Namiri, I'm sorry you're having to go through all of this, IVF is hard enough so having the added complication of LN on top it must be so tough
I don't have LN but I have other autoimmune complications and like you I am 32 and have a low AMH - 2.3, and poor ovarian reserve. In my first fertility scan they counted 10 follicles and six months later they counted 8. It was terrifying as I was repeatedly told it needed to happen fast or it wouldn't happen at all and there were lots of frustrating delays that I had no control over before we could start. It took two back to back rounds of IVF to get pregnant. My first round failed completely, we only retrieved two mature eggs and neither made blastocyst but after taking dhea and coq my second round was a lot more successful and we got 4x d5 blastocysts. (The protocol was exactly the same so the only difference was the dominant ovary and the supplements).
One thing you do have on your side is your age so even if your reserve is low your egg quality should be good and believe me that's one of the most important things.
Thanks for taking the time to share your experience and congratulations on your pregnancy! It’s really encouraging to hear success stories like yours as it is easy to spiral when looking at all the hurdles ahead. I am taking the same supplements so hoping they work for me too. All the best with your little one 😊 xx
I am in a very similar situation to you. 32 years sold with 5 follicles I keep reading about DHEA but can’t find how you get this - where do you get this from please??
Hi Keepondreaming. Thank you same to you! I found dhea really hard to get hold of, it's not routinely sold in pharmacies. I ended up buying it from a website called iherb. They have it in different amounts, I bought 60x 100mg and took one a day. Hope that helps! X
Sorry to read your post - hope you have people around you for support You mention not knowing many people with lupus- are you aware there are support groups lupusuk.org.uk has advice and info for people with this condition
I can’t comment on the lupus, but I had an AMH of 2.2 in July 2021 and 1 in September 2021 (aged 28). Conceived naturally in December 2021, and have just had my AMH retested and it is 3.3 (?!).
I’ve spent the last two years thinking my AMH would be rapidly declining as I suppose it would be expected for older ladies, but perhaps some people are just born with lower AMH. Who knows. I totally get the feeling though that there’s a time bomb waiting to go off, and it’s better to do things quickly.
I’ll keep my fingers crossed for successful embryo/egg banking for you xx
Thanks for taking the time to share your journey 🙂 I was also very surprised that my AMH increased in a short period of time, I have read that it can fluctuate but not sure by how much. It’s great that you managed to conceive naturally, that’s the dream! All the best for you too xx
I am so sorry to hear that you have LN. I have a few autoimmune diseases and although I haven't been diagnosed with Lupus yet, my rheumatologist thought I may have it and as I am having a bad flare right now and my antibodies have come back through the roof... I need more tests done and to see my rheumatologist afterwards.
I am much older than you, nearing 40 now but I do have a 15 month old IVF baby who is literally a miracle baby and arrived after lots of heartache and many losses. What I would say you have in your favour is your age and that is so important because of the egg quality, although your AMH may be low. Your age is a plus.
We do have one poor quality embryo in the freezer which we cannot transfer until the rheumatologist agrees it is safe to do so. He said ideally only 6 months after I have been stable and had no 'flares'. My personal advice based on my experience is liaise with your Nephrology Dr, rheumatologist, etc. and if you do an egg collection now, do not transfer any embryos until they think it is a good time for you to do so and you are under the right medication and your lupus activity is stable. Any autoimmune disease needs to be stable before a pregnancy or otherwise the risk of complications in pregnancy is very high.
I know my situation is different and I am very lucky to have a son after such a hard journey but I understand what you mean by feeling the pressure. For me, I have just had to come to terms that I will not be able to do another egg collection, due to my age, endometriosis and the fact that I now cannot take any oestrogen/hormonal treatment.
Your age is on your side and your health is the most important thing right now, so look after yourself and follow your doctor's advice. Have you joined the Lupus forum here? I think that would be very helpful as people there have experience with lupus and possibly pregnancy.
Wishing you all the best on your journey and feel free to PM if there is anything I can do to help xxxx
Thank you for replying to my post! Sorry to hear you are currently having a bad time with a flare up, it can be the most frustrating thing when they come about for no reason, but I hope you manage to find some answers after these tests.
It made me smile to read that you finally got your miracle baby, you are such a strong lady to have kept going even after all the heartache!
Thank you for your advice, I have tried speaking to my Nephrologist and was told I should be in remission for at least 6 months. I asked if I was in remission now but the response was I ‘technically’ was but they want to reduce my proteinuria even further before pregnancy. The potential delay stresses me out but you are right, I shouldn’t rush the process in case I put myself and a baby at risk. I will also have a look at the lupus forum 🙂
All the best with your next embryo, wishing you a second miracle ❤️ xxx
I don’t have LN but I am also 32 and have low AMH. I have only ever had 5 follicles since 2021. I am really hoping these don’t diminish just yet. We have had three eggs collected at most. I have had two embryo transfers and unfortunately neither have work. There is also a male factor for us too though.
We have had two eggs on each collection apart from the last collection and thats when I changed my diet completely and cut out all processed food, processed meat, refined sugar and preservatives. I rescued carbohydrates and increased antioxidants. This resulted in the best collection we had of 3 eggs and all 3 fertilised (unfortunately only one progressed to day 5)
Hey, thanks for sharing your experience. The fact you still have 5 follicles since 2021 is great, have you had your AMH retested over the years?
I actually already keep quite a clean diet because of my lupus (also mostly plant based) so hope it that helps increase egg quality since all I can do is collect embryos right now. Have you read a book called ‘It starts with the egg’? It gives advice on how to improve quality. Did you PGS test your embryos?
Also seen your reply on my other post, my doctor recommended DHEA from biovea.com , I would check with your Dr on quantity but I was told to take 25mg 3x a day.
Fingers crossed everything works out for you! Feel free to PM me if you need anything 😊 xx
Thank you so much for the dhea advice! No I haven’t read it but I’ve ordered it this morning - to be honest I saw it ages ago the. Decided against it after buying another book once which was rubbish, but seen several people on here advise on it starts with the egg so I’ve taken the plunge!
I’ve been taking a number of other supplements including co q10 enzyme and I have started taking some others following a post on here (happy to share if you want these)
We didn’t PGA test - our first cycle was nhs treatment we have had three private cycles and this unfortunately resulted in only one 5 day embryo. However, we now need to plan next steps and I’m going to ask if PGA is beneficial. Not sure if it be hard for them to say as we have only ever had one 5 day embryo transfer and the other was transferred on day 2.
I haven’t had it retested but I will ask if it needs to be retested. Part of me does want it doing as I don’t want to know if it’s worse. 😩
That’s good you have a good diet anyway - to be honest I thought mine wasn’t bad u til I started doing this!! I Cook every night and we rarely have take aways but things weren’t as healthy as I thought. I also don’t drink enough water (or of anything) so I’ve made real conscious efforts to drink more.
Try not to focus on the numbers to much as they always say it’s quality not quantity. Wishing you lots of luck! Happy for you to DM me if you want to chat 🙂 xx
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