I'll be having my first FET in a few weeks time, and something has been bugging me for a while.
I suffer from a few autoimmune issues - I have psoriasis, psoriatic arthritis and also elevated thyroid antibodies (sidenote: my thyroid is otherwise under control with levothyroxine). Generally my arthritis is under control with meds but my psoriasis is still kicking about. I also feel like I am quite 'autoimmuney' in general (I get hives now and then, which I know can be a symptom.)
However, my IVF clinic isn't putting me on any sort of autoimmune protocol - despite me raising this a few times, they aren't putting me on anything other than estrogen and progesterone.
I see many women on here and other forums discussing all sorts of extra care like steroids, intralipids etc, and NK cell, Emma/Era testing among other things.
My question is - can you have a successful IVF transfer/pregnancy with autoimmune issues and zero extra intervention? And do I have to try and fail a few times before it is taken seriously?
Genuinely intrigued to know because all I see online is generally any sort of autoimmune issue = bad for IVF. But I know I am possibly being swayed by seeing so many other people's experiences, so want to get my expectations right, ha! Am sure and hopeful many women with autoimmune issues can succeed in IVF without extra help.
We have 4 PGT-a tested embryos so we have a bit of wiggle room but ofc would rather not use them all up on trial and error, as it were. (I know IVF in general is trial and error but I mean while knowing I have health concerns...)
Any advice, anecdotal or otherwise, much welcome! Or someone to tell me I have no reason to worry 😂
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orangecatmum
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hi I would defo go with nk cells test, the problem with clinics are they go with the basic protocols and if it dosnt work they will tweak and you can try and try again, but that is time /and money for you and not always the outcome u want, but money for them… I would highly recommend have the nk cells test c what that highlights, but definitely to have acupuncture before hand and intralupids also x
I would push them for more tests and mention the option of steroids to them. I'm not a doctor but that's what I was given, steroids and last cycle intralipids, which I opted against in my current cycle as I did it just as prevention of miscarriage which didn't stop a miscarriage in my last cycle. Like the previous poster said some clinics just go for the basic cycle and they see how it goes. And like you said why do this when you have better options. In my case, we have done over 10 cycles and we found we had to push the clinics (we have been to 3 different ones) to test further. We also do our own research and read journals to see whats out there. This page is also helpfull to see what other people have done. In our case one test which tests for dqa match, which is rare and they said we didn't need, turned out positive. Now we do what is called LIT therapy in our cycles. I have no idea if this works as last cycle was a miscarriage and im currently 5 weeks so waiting to see what happens. But the two cycles I added the steroids have resulted in a bfp and my nk cells were not bad but border line.
Hi orangecatmum, I think it can vary for some reason and they aren’t sure why. However, in my experience my autoimmune issues caused chemical pregnancies, miscarriages and implantation failure. My clinic didn’t understand autoimmune issues and so sadly it took a long time to find the correct treatment and now I’m 21 weeks pregnant 🤞 I would have some NKC blood testing as soon as you can, as failed transfers and miscarriages are incredibly difficult to deal with and the money spent on any failed transfers could be spent on testing. Best of luck.
Thanks everyone - really appreciate your input. I sadly don't have time for more testing as I start the process for the FET v soon and my clinic are adamant I don't need further testing but I guess I am sort of going into this expecting it won't work and if it fails (which it sounds like it probably will 😔) I will use everything in my power to push for more help and testing and guidance on round two. I guess a failure will give me more leverage? Just one though - I refuse to repeat the process with a second embryo.
My clinic is great in many ways, and is one of the top in the country, but they seem quite hesitant elsewhere (i.e they told me my TSH of 4 was fine - but I saw a private endo who has got it down to under 2). But maybe I am really just hoping to be one of the lucky ones? V naive I know.
I also have Hypothyroidism (under control with levothyroxine) and other mild autoimmune conditions (dermatitis, etc.).
My fertility specialist checked my TSH levels every two weeks (every other time my progesterone and estrogen levels were checked) and ended up steadily increasing my levothyroxine dosage from 100 to 200 mcg to offset the estrogen (which can affect TSH levels/levothyroxine absorption), so make sure yours is aware of this.
As far as other autoimmune issues, I would suggest cutting out foods that are common irritants to people with IBS or immune compromised (sugar, peanut butter, gluten, etc.). I've known for years if something irritates me because my dermatitis will re-emerge (I use a topical steroid for breakouts). I also take vitamin D supplements daily, which have been shown to support the immune response. There are plenty of articles online on this or the topic of autoimmune diets for IVF if you're interested.
We had our first FET at the end of December with a 5CB (our only XY), and I am currently at 27 weeks with our little guy developing well.
Remember: they may be the 'experts', but you are your own advocate and you do not have to settle for a passive or dismissive response to your autoimmune concerns.
We had an international donor and ended up with 3 euploid embryos, so I'm well aware of the potential costs and risks incurred by those of us in the IVF community.
You are paying the bill and you are not obligated to undergo your transfer until you feel supported and understood by your care team.
Thanks! This is v interesting. I am so exhausted of advocating for myself (since my miscarriage last Feb I have seen lots of private specialists for a few issues I have discovered but it has been hard graft, my GP and my NHS clinic are really tough and dismissive on things - essentially we are having IVF for male factor, but I have PCO, thyroid issues and I've had microbiome issues/ureaplasma, and mild adenomyosis) so the thought of pushing and advocating even further right now fills me with dread.
I kind of do want to try this FET because it has felt like such a long time getting here and I guess I have a naive hope of 'maybe I'll be a lucky one'? I know this is probably something I'll regret but I have asked my clinic several times about my autoimmune issues and they said as long as my arthritis is under control with medication it'll be fine. Who knows really.
Also the peanut butter/gluten thing is interesting. I literally eat PB every day, ha. I didn't know that was bad for AI! I also cut gluten out for 8 months in a bid to reduce my thyroid antibodies but they actually increased - my private endocrinologist told me that doesn't work, so I am back eating gluten again. Maybe I should think about cutting it out again before my FET. All food for thought!
Thank you for your post - I know you are so right re: advocating. I do think I'll try this one and then go in armed on my 2nd if it doesn't work.
When people just get pregnant on a one night stand, it blows my mind when so many people have to put so much effort into it!
If cutting out gluten worsened your condition, I would suggest staying with it for your transfer (maybe consider if it was actually cutting out gluten or the alternatives you ate in it's place that increased your antibodies). I also am prone to microbiome issues (some studies suggest this imbalance to be a source for immune issues). Make sure you stay on top of any potential BV or yeast infections.
I understand the feeling of wanting to just try and move on from the IVF limbo. That's how we felt with our 5CB embryo, even though our others had better grades and our specialist encouraged us to use those first. We just really wanted to go through with it, regardless (I can feel him moving around as I write this).
Who knows? Maybe this FET really will work.
My friend and her cousin went to McDonald's immediately following their transfers for some fries and both transfers were successful. I think it's more to do with lowering anxiety/stress since you're not really supposed to eat greasy food like that, but the fries worked for the 3 of us 😆.
Good luck with this FET and let us know how it goes!
Aww I am so glad you can feel a wriggler in you! Lovely news! And congrats to your friend and her cousin, too.
I think I am at the point of information overload, ha. I almost wish I didn't know as much as I do and was able to into this first transfer with blind hope. It may still work, but if it doesn't, I have the tools/knowledge at my disposal to push harder. This is also why I wanted to PGT test my embryos - so I know that if they don't work, the issue is with me.
That's also interesting re microbiome/immune link. I had recurrent BV while we were trying naturally and now I take 3 probiotics, 2 which are packed with lactobaccilus, and I took an antibiotic to get rid of the ureaplasma. Symptom-wise, things do feel so much better so I'm hoping that will be a big help, too!
I shall give updates I am sure, I love this forum and everyone in it - so helpful and supportive!
Hi, it might not be too helpful as I don't have arthritis and don't have thyroid issues in general, but have you tried gluten free diet? I was pre-hashimoto, and mu elevated anti-TPO went below the upper limit of the normal range after a few weeks of cutting gluten. My husband says I had a goiter before and it's gone now. After 9 months my second FET was successful. As a side effect I'm enjoying a lack of what had been otherwise a life-long constipation even in pregnancy (with magnesium and vitamin C supplementation).
I did actually go gluten free for 8/9 months to reduce my TPO antibodies but they actually slightly went up! I was really shocked as everything online suggested, as well as a nutritionist, that they should reduce. I then saw an endocrinologist who said gluten free isn't a valid/tested way of bringing them down - so no need to cut it out further. He didn't think my levels were too worrying - a bit high (around 150), but not enough to be diagnosed with Hashimotos. Am so glad it worked for you, though!
Ah I see, your situation may well be different and you have been on medications and I wasn't. Can't help with my experience then, but it might be worth watching Jordan Peterson's daughter's interview on YT "Joe Rogan - Carnivore Diet Fixed Mikhaila Peterson's Arthritis" regarding her going carnivore which resolved her arthritis and I believe she went on to have a baby too. Again this might not be for everyone, but worked for her and her father!
I have psoriasis and psoriatic arthritis, my successful transfer included steroids! But I did also have nk cells and cytokines tested which were raised (I don't think the clinic would have let me have steroids without that!) BUT I'd also just been prescribed steroidsn for the arthritis anyway from rheumatology! So if they were willing to give steroids your clinic might be more willing or taking it seriously?
Ooh this is good to know. Did you struggle with transfers before going on steroids? I could try going through my rheumatologist actually (but she is NHS and so so difficult to get a hold of outside of my twice yearly appts!)
Hi, yes I'd had 6 fails before including pgta tested embryos! Who knows for sure if it was the answer (as I'd also tried using steroids whilst doing home insemination and it didn't work), but the ivf with them did!!
I don't have an autoimmune issue, but I did get my NK cells tested as both my parents had quite severe psoriasis - and I'd read that even familial AI can be a marker for your own immune system.
The tests showed that I do have very elevated immunity and was given steroids / intralipids. My first transfer with these was successful (number 6 after 5 fails).
So I would be very keen to get yours tested if I were you
Thanks! V useful info, too. And congrats on the 6th transfer!
I just looked into my clinic's policy on testing and they don't do it until there is a reason to - so I will go through this one in a few weeks, hope for the best but expecting the worst, being v realistic, and then I'll go to them armed with my research and push for testing for FET 2.
An update: I tried to see if my private endocrinologist would recommend I go on steroids to my IVF clinic (v much as a last resort) because of my thyroid TPO antibodies alone.
He told me I don't need steroids because of my TPO antibodies, and he won't make the recommendation to my clinic. He disagrees with the use of steroids unless a clinic advises it and says there isn't enough evidence that it works/helps...
So my last resort is now over and I guess I have to go through this without steroids! Frustrated and defeated to say the least - and I can't really push my clinic as it's NHS only so it's not like I'm paying for it.
I'm still hoping to find someone out there who has autoimmune issues and had successful IVF without steroids... but that feels like a bit of a pipe dream right now?
Sorry lovely - how frustrating. Could you push your clinic on this one? Tell them it's your body and you want to try it?? I don't know how likely they are to relent.
When I tried steroids my clinic wouldn't prescribe them because it was during covid and their protocol was that they weren't allowed to give anything to reduce my immunity during a pandemic - they told me to get my GP to prescribe them - so I spoke to her and she did.
I will bring it up one more time but I know they don't want to do it and they won't relent. It's so exhausting, I never realised a large part of this whole process would be me fighting so much and losing! Ha.
Hi ya. Our stories sound very familiar orangecatmum . I have psoriatic arthritis, hypothyroidism and have had several miscarriages.
We had a FET in 2022 with a pgta-a embryo and it was successful. I didn’t take steroids but followed the advice of my clinic (endometrial scratch and sex before and after the FET.) So it can happen.
Sadly, we just had another FET that failed, we had a euploid embryo and followed the exact same protocol as last time. I believe my body had an immune response to the transfer as I was very ill the day after. In our follow up consultation I am going to discuss the possibility of using steroids next time.
Thanks for your reply Becca1313 - that's so great to hear that it worked for you the first time! It is nice to hear a success story regardless, but particularly someone so similar to me. But I'm so sorry no2 didn't work out - I hope your clinic is able to move things forward for you next time and allow you steroids.
I spoke to my clinic on Friday and told them my concerns but they really went hard on the 'this is why we don't like giving steroids' thing. I am currently having a psoriasis flare (could be all this stress tbh!) But they are confident I have a chance without steroids so I just have to trust them!
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