Joint pain in fingers after embryo transfer on IVF cycles. Immune system attacking embryo?

I'm wondering if anyone else has experience of the body almost attacking an embryo after a transfer in IVF? I've had it after every one (3 so far) and they have all resulted in a failed cycle.

I have been on levothyroxine for a few years for my Hashimotos disease. My antibodies were 1300 at their peak and currently 607. My TSH is 2.5 this month this has jumped up from 0.62 last month......maybe as a result of the medication we are taking for our current IVF round.

I started taking steroids, blood thinner injections, baby aspirin, and my levothyroxine was upped to 100mg in October.

We had the embryo transfer on Friday and on Saturday night and Sunday morning I had really bad throbbing pain in my knuckles of my right hand again, just like before which is making me think this one will be a negative too. Heart breaking and soul destroying to be honest.

I have been to see a private endocrinologist who upped my dose to 100mg from 75mg. He was nice, helpful etc but keeping upping my dose doesn't seem to be helping with this recurring problem. It feels like my immune system is attacking the embryo and not letting it implant.

I am gluten, soy, alcohol, dairy free and am not sure what else we can do to avoid this happening again.

Has anyone experienced anything like this? It would be interesting to know if anyone has been to a see someone in London with a fertility endocrinology background or an immunologist?

Thank you so much.

5 Replies

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  • Hi OllieMac. It is unusual to get symptoms like this, but could be related to treatment and interfering with hormones. The fact that this has happened and you have had so many failed attempts, then should this cycle fail (really hope not), then further investigations should possibly be requested. All clinics have their own set of criteria regarding having things like your immune testing performed, and these are not considered a priority with NHS treatment. I am sure that your clinic should be able to offer it to you, but of course you are best guided by your consultant on his/her recommendations. If they don’t have the facilities to do this and feel it may be beneficial to you then they will be able to arrange for you to have the blood taken to send off to an appropriate laboratory – at a cost. Unfortunately, all the immune problems including looking for natural killer cells have not altogether been proven to cause recurrent treatment failures or miscarriage, and this may be the reason they don’t offer the test. However, if they were found, then you would probably be offered a treatment involving intra venous drugs such as immuno-globulin and also dexamethasone and prednisolone (forms of steroids). The side effects of their use, you would need to get thoroughly explained to you. I have heard increasing successes with couples who have had repeated failures undergoing treatment following a positive diagnosis to the natural killer cells and have gone on to have ongoing pregnancies and births. Sometimes, as explained, the “above” treatment has been offered without testing first! Hope this helps a little and still keeping everything crossed that all does end well. Thinking of you. Diane

  • Thank you so much for your reply Diane.

    I have had NK testing and it came back as being ok which is interesting. I really do feel like my body goes into attack mode after embryo transfer and I think something with more impact than the prednisolone I am currently on might be needed. I have heard and read about the intravenous drugs.

    We'll just have to wait for test day and take things from there if it is sadly another negative.

    Thank you again for your thoughts, I really appreciate you taking the time out to get back to me.

  • Hi OllieMac. My pleasure! Do let us know how things go. Diane

  • Hi, omg this post is exactly on the same lines as what I'm worrying about this morning! I have hashis, and when my symptoms are bad my joints in my elbows get sore and achey and my hands get numb and tingly and the knuckles swell and lock and hurt. This has been better for a while but I think stress must flare it up - I was relaxed and enjoying feeling relaxed and rested whilst I take norethisterone ready to start stims in around 8-10 days for my first round of ivf. But a huge emergency has happened at work and I've worked 10 days straight and the end is nowhere in sight let alone how stressful it is, and all my joints have seized and are sore. I worry it is severely interfering with my ivf now 😞

    There is so little interest and regard from doctors on this. When symptoms are as clear as ours it's almost like we know best but no one listens 😞

    I will be thinking of you and hope that this one is ok for you. sending positive thoughts and vibes xxx

  • I spent months trying to figure out if anyone else has had these strange symptoms! So glad to finally find something about this.

    I had my first cycle in Feb 2016 which resulted in a positive. Prior to testing I had some minor spotting which I think was just implantation bleeding. However, around a week after the embryo transfer I began getting really bad pains in the middle of my calves. I mentioned it to my consultant but she didn't think much of it. I had some minor cramps and at 5 weeks went to early pregnancy unit and was assured all was okay as gestational sac and yolk sac were both visible. At 7 weeks in our first early scan, we were told the pregnancy had stopped progressing. I stopped meds and waited for it to pass naturally, but after 3 weeks nothing happened, so I had an ERPC and then the calve pains began to fade.

    October was the 2nd cycle doing a FET. This time we also decided to try accupuncture. A week after the embryo transfer the same pains began in the calves again! And I had a bad feeling the same thing would happen. The pains got stronger and I also had slight chest pains. I went to a&e as I was concerned about clotting. A D-Dimers test and ECG were done and all fine. It came to test day and I got 1 x negative test and 1 x positive. Repeated tests a few hours later and got the same results. I went to my clinic and they did a urine test that was negative. My consultant then checked my bloods and it showed HCG but fairly low so asked to retest me in a few days, they did and the HCG had dropped and I'd had a biochemical. I thought it strange how the pains in my legs were much stronger this time and how the pregnancy stopped working even earlier on this occasion. I stopped the meds and a few days later had a bleed. However, the pains continued to get worse and then progressed into my hands, fingers, wrists, elbows, shoulders and arms. It felt like joint and muscular pain. I had experienced a similar kind of pain randomly a few years ago in my shoulder and fingers, but never thought much of it until now that I've had it again.

    I visited my GP and explained everything and she thought as I'd previously experienced stomach pain and strong fatigue as well as all the other pains, I could be suffering from a leaky gut that could be causing inflammation which is not a good environment for a baby to grow in, so my body could be rejecting it. I ended up cutting all grains and gluten and had food intolerance tests. It showed I have a problem with gliadin (a component of gluten) and also Casein. I changed my diet and have been eating fully organic food 90% of the time, unless out at a restaurant. I never drink either. All I drink is bottled mineral water. I eat food as natural as possible and stay away from all processed foods and refined sugar. I'm also on very strong probiotics. I've felt my energy levels improve drastically and no longer have stomach pain and feel so much better, all except the joint and muscular pain. Since October the pains have not subsided and in the last few months also developed into tingling/pins and needles all over my body and have been pretty much constant everyday, but can come and go throughout the day. But generally there most of the time.

    We are currently preparing to do cycle number three now privately. I explained all my previous symptoms to our new consultant and she requested I saw a reheumatologist. My GP has also given me several full blood counts and tested a few other things that all seem to be coming back normal. The rheumatologist also did a full comprehensive autoimmune screen and everything is normal. I'm awaiting the x-ray results of my hands, shoulders and chest from the consultant but she doesn't think anything will show up. I've also seen a neurologist for the tingling etc and have been through a nerve conductive test which the Dr said didn't show any nerve damage. I had an MRI of my neck and brain last weekend and awaiting those results. The neurologist has just done these for peace of mind as he doesn't think I have any serious neurological problems. I am also seeing a nutritionist who has now suggested I try a low oxalate diet, as she thinks it may be the calcium oxalate that is building up and causing the pain/inflammation. Although I'm not sure how that would interfere with the IVF. She has also just had me do the Dutch test to check all of my hormones, which I'm waitning for results. I have also now even considered seeing a haematologist but don't know if this is necessary or not. The miscarriage clinic have already tested me for any clotting disorders etc as well and it all came back negative.

    I am also waiting for the results of my NK cell blood test and endometrial biopsy and have a telephone consultation this Friday with my consultant. My partner and I have also had the Annexin V testing done and are waiting for those results too.

    I am also currently on 50mcg of Thyroxine since May. Originally my other clinic had me on 25mcg. I was told my TSH was within the normal range but for fertility they like it to be a different level.

    We also had PGS testing on the last 5 embryos we had tested and 3 were abnormal. 1 had an extra chromosome, 1 less and the other multiple abnormalities. So we are left with 1 normal one and 1 that came back with an inconclusive result.

    But regardless of all these immune tests the fertility clinic have done and Annexin V and PGS testing, I feel like that doesn't explain all these other pains and feel so lost as to what could be causing them. Everytime I see my GP and complain of the persistent pains, they just look at me like I'm crazy and now say it may just be fibromyalgia. We are due to do the next cycle within the next couple of months once all the test results are back, but I'm just so afraid that because I still have the pains that it's going to happen again. I even wonder if maybe my body just reacted to the medication and perhaps that's what's caused it? I don't know if that's possible, but that's also very worrying when we're going to do it again.

    I feel so lost and confused and also feel like no one listens. 😔

    If anyone managed to get anywhere with any of these bizarre symptoms, or has any advice, it would be great to hear.

    Good luck to everyone. Xx

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