Graves Disease or any autoimmune disease...what does this mean for IVF...help!!

[jennyH1]

Hi guys,

Just wondering if anyone here has experience of graves disease or any thyroid autoimmune disease and the effects on IVF??

We've had years of failed own egg IVF and 2 failed rounds of donor egg IVF with just one pregnancy that sadly resulted in early miscarriage  My TSH levels have always been within normal range for all cycles. I have raised NK cells so always on steroids blood thinners and intralipids.

Recently my thyroid became overactive for just a second time (first being a couple of years ago) My endocrinologist has now told us I definitely have Graves Disease and am now on neomercazole and beta blocker to bring down heart rate ans stabilise TSH which is now just 0.005.

Would be great to hear from anyone who's experienced this and may have any advice at all or even a bit of hope that things might still work out for us? Also really happy to hear from anyone who's not yet had success like ourselves.

Really appreciate it!!!!!! Thanks

[FertilityFriends]

[K jade]

Artypants knows loads about this hopefully she'll be along soon

[jennyH1]

Aw thanks a mil K jade I feel totally lost!!

[Artypants]

Hi JennyH1

I am sorry you are finding yourself in the horrible situation of having an autoimmune thyroid diagnosis. I have swung between over and under active in the last few years and unfortunately it is harder to control Graves as there are only a couple of medications to treat this. However, beta blockers and thyroid meds will start to work straight away and you will hopefully start to feel normal again soon. Has your endo actually tested you for the Graves antibodies? If he is giving you that diagnosis without testing the blood  for antibodies don't take it as gospel as I was given graves as a diagnosis and it was actually Hashimotos that was causing my thyroid to be overactive in the beginning so they overmedicated me and I ended up in A&E very poorly indeed so please do make sure they have covered all bases with these tests, dare I say it but they do like to cut costs with these tests as they cost money!

If you can get your TSH to around 1 and T3 & T4 all in range then you should be in a good place. I haven't been able to get my antibodies back to normal levels so intralipids and or steroids could also be needed if they are very high. 

In extreme cases of Graves they can recommend removing the thyroid altogether as its hard to treat, it would mean you would be permanently under active but that is much easier to manage than being overactive. Plus you get free prescriptions with underactive thyroid!

Just to give you hope though I have managed a full term pregnancy once! Its not insurmountable!

[Artypants]

PS I just read your post on the Spain boards, if you can get onto PTU  sonner rather than later then do your best, PTU is much kinder on your body but is much more expensive so they put you on the cheaper meds first! I know its really horribly scary dealing with this going through treatment, its not the end, its just a setback which I am sure you can get through.

Big hug 

[jennyH1]

Artypants thanks so so much for your reply!! I really appreciate it.

First off I'm actually in Ireland. I'd be so lost without this fertility group as their isn't a group with such a high number of members over here and so it's great for support. So over here I am seeing an endocrinologist privately. She's actually really nice and takes her time explaining things. She has done a TSH receptor antibody test which I assume is the one your referring to that determines if it graves disease? She seemed very sure that it was.

If you read my post in the Spain thread you'll see that she's also recommended that we change clinics so she can liaise with our IVF clinic over here without too many obstacles. This brings with it huge complications as we're doing donor IVF and finding somewhere your happy with is a huge task!!! My head is literally fried!!!

I guess my question is...other than all we already know about graves disease and fertility (ie TSH must be within normal range...complications with meds...risk of miscarriage etc)...do you know if graves can cause any other complications. For example, have you ever heard of anyone having uterine inflammation for example due to grave's autoimmunity? Or have you ever heard of a connection between graves and NK cells? Anything else you've experienced or ever heard from anyone else?

The reason I'm asking is because if I thought there were no other secondary complications to graves with IVF...and it was just a case of medication stabilising your thyroid and being on the correct dosage etc then I would be more inclined to continue with our clinic in Spain as they are very good with communication and I could just act as the go between for my endo and the clinic.

On the other hand if I thought I may need additional testing I'd prob try find a clinic here or in the UK. I love our clinic in Spain but they wouldn't be the absolute best with diagnostic testing.

Sorry for asking all these questions but artypants...I'm not joking when I say I have literally been on this laptop all day researching and would sooo appreciate your advice.

Ps thanks so much bout the tip on PTU. I'm on carbimazole at the mo and my endo has suggested trying to get down to a low dose of 5mgs pre treatment then PTU if we do get pregnant. I don't think she's worried about cost as she's in a private clinic and they don't give a rats ass about cost...sadly for us  I think she feels I need to be on carbimazole to keep my thyroid from shooting up again when it does settle. I think her rational is to try to get us to our next cycle asap but I will defo ask her on next consult!!

Finally huge huge huge congrats on your full term pregnancy!! I hope all is well with your little miracle.

Thanks again Artypants. You are literally my life saver on this one!!!! 

[Artypants]

Oh bless you Jenny it is a total head fcuk isn't it! Sounds like she is testing for your TRab antibodies, these can take a while to process but it will confirm if it is graves.

As far as I am aware Graves should not cause any secondary issues in pregnancy, as long as your levels are all within range (TSH, T3 & T4) it shouldn't stand in the way of staying pregnant. One of my friends has Graves and conceived 3 times naturally and had 3 healthy pregnancy's (lucky cow!) is your consultant recommending intralipids or steroids? If you have no other underlying health issues then hopefully no other inflammation risks for you.
I am more complicated in that I also have endometriosis, adenomyosis, factor v Leiden and diverticular disease as well, so my whole body is just one huge toxic mess. I am the human version of Chernobyl 

If you are happy with your clinic and can get your bloods to a normal level before you go then there is no need to change clinics in my opinion, they probably see this a lot and I am sure they are familiar with thyroid issues and can support you with this. I would continue with your clinic but alongside your private endo who sounds great actually. Adding a new load of stress by changing clinics now wouldn't be good for you, you need to be happy and comfortable with your choice of clinic

She really is a miracle, she was our 6th transfer, our first with donor egg, we are very grateful that she beat the odds with my terrible health issues so please keep the faith that it can and does happen. She was also a Spain baby too! Hopefully a good omen.

Please do keep me posted and if you have any questions at all let me know.

Big hug xxx

[jennyH1]

Artypants thanks again so much your a pet.

Aw it's so lovely to hear about your little miracle. Wow she really did beat the odds as did you...go girl power

Yeah that was prob the TRab results that prompted her to ring me with confirmation of Graves disease.

It's lovely to hear you say there shouldn't be any secondary probs...I mean if anyone should know it would be you!!

Only concern I have ( or topic I'm investigating ) is the inflammation. Also you will know that thyroid and endometriosis are linked esp in graves. Also I've heard people saying that graves can interfere with "protective antibodies" and it's worth having a LAD test. This is all new to me and I haven't done much research on it yet. It could all be rubbish but we've had so many years of this now and I can't bare the thoughts of another failed donor egg cycle or miscarriage and just really want to throw the kitchen sink at this one.

Yeah we've always had steroids,blood thinners and intralipids with all our cycles as I have raised NK cells. Don't know how that's gonna work though as clinics over here are nolonger prescribing them due to Covid. Are they over there? Just hoping that might change in the coming months.

The good news is we're defo going to stick with our clinic in Spain so that's given us a bit of relief. I've found out there is a clinic over here connected to my clinic UR Vistahermosa. Only snag is this particular clinic doesn't have a great name. It's not really that it has a bad name either but fewer people over here would use them for any kind of IVF. It wouldn't be seen as one of the more popular ones. We have another option of a satellite clinic who's consultant gets fab reviews but I'm not sure yet if my clinic in Spain will be agreeable. Waiting for return email.

Artypants thanks so so much again. I will defo keep you posted even after we finally find our new consultant and he's given his advice. I bet you'll be right and it'll be much more straight forward than I imagine. Maybe in a way I'm trying to find extra probs as it might give some answers as to why we don't have our little baby yet. Clutching at straws big time 

Enjoy time with your little angel and I'll always keep a look out on this thread if you post again and I'll keep you updated

Big hugs back