Hi all
I've recently found out that that I have hashimoto disease after having a failed round of ivf. Apparently this means that my immune system is possibly treating my embryos like a foreign body and attacking it! They've suggested that for my 2nd round I take steroids to lower my immune system so i was juat wondering if anyone has any experience or advice in regards to this?
Thanks x
Hi yes I take steroids, but I have only managed to get chemicals, anyway my next go in January so can’t wait, I am sure your be fine with them, lots take them and have good results xxx
I don't have hashimotos but I do have an immune issue where my nk cells attack the embryos at implantation stage, so similar issue and similar treatment. 3 years trying to conceive and the first month I took the steroids (and other meds) I got pregnant naturally, and am now 9 weeks pregnant. The steroids work miracles, they also mask pregnancy symptoms so all I've had is a bit of a sicky feeling and some tiredness. Otherwise they make you feel really good. Compared to the two miscarriages I had in 2018... I was horrendously ill before I miscarried, never been so ill... So steroids can make the first trimester far more enjoyable in my opinion. Good luck with your treatment/ cycle xx
Yesss! This is exactly what I wanted to hear!Thanks for sharing this with me, really helpful xxx
If you have a decent amh and your partner has decent sperm quality, do investigate trying naturally once on the meds. We've saved thousands just from taking a few cheap pills x
Theyre only putting me on the steroids once they've transferred my embryo so I can't really explore the natural route unfortunately xx
Ahh OK. Good luck with your cycle, fellow steroid buddy 💪😊
I haven't even said congratulations! Absolutely amazing news, you must be really pleased 🤗🤗
Can I ask who are you having treatment with. Private message me the names of your clinics, mine is not doing steroids or intralipds so I’m trying to find one that does. Thanks.
If you haven’t already I’d recommend posting in the Thyroid U.K. forum on this website for advice.
I’d also recommend reading up on these articles. Your TSH has to be no more than 2.
These two posts by Dr Izabella Wentz about thyroid and pregnancy are invaluable:
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
Thanks for this. Nobody has mentioned changing my diet or taking vitamins....What changes have you made?
Where do you want to start? 😁
Changed my thyroid medication, my diet, vitamins and lifestyle! But I did most of those things because I wanted to. Getting your medication levels right is the biggest thing to begin with.
By vitamins it’s not necessarily about taking supplements but aiming to get as much nutrition as possible from food and then topping up with supplements if needed. Regular thyroid and vitamin tests are also important.
Ok I might buy that root cause book then as I don't have a clue. Are you gluton free?
The first thing you need to do is get a printout of your blood results from your GP. Get an opinion from Thyroid U.K. group.The NHS at best will only test TSH and FT4.
You also need FT3 and TgAb and TPOAb. How do you know you have Hashimoto’s? Did you have the last two tests done?
You also need good levels of Folate, B12 and iron. The NHS will check Ferritin which is a protein which stores iron. Not the full story but still very useful. Get a printout of these results too.
I am gluten free but that’s not something you must do. It depends. Izabella Wentz is a really good resource.
Hi yes I think I have been tested for everything now. Bit levels were all fine etc. I will definitely buy one if the Isabella wants books. Which do you recommend? Xx
I have the first one and it’s very good but from the sounds of the title this one might be a better choice. Sounds like it’s giving you a proper plan:
Hashimoto's Protocol: A 90-Day Plan for Reversing Thyroid Symptoms and Getting Your Life Back amazon.co.uk/dp/006257129X/...
Her third book sounds like it’s just about food.
Ordered haha x
All the best x
Omg just had my blood test results after following the protocol for 6 weeks and I've gone from 2.7 to 0.1. Reducing my medication from 100mg to 50mg.....yay!!! So proud of myself! Thank you for sharing your advice with me, much more helpful than any gp I have seen!! The only way is up xx
What exactly did you follow from the protocol? If your GP is just looking at your TSH and lowering your dose based on the fact that it has gone down without looking at FT4 and FT3 then you could end up being under medicated. These markers indicate the amounts of free thyroid hormone circulating in your body. It's really important to get TSH, FT4 and FT3 with the reference ranges. You're legally allowed a copy of your results. If your FT4 and FT3 are too low or even below the range you could end up with all kinds of symptoms and problems. It's not all about the TSH and 50mcg is a starter dose for Levothyroxine.
Just because your TSH has lowered doesn't necessarily mean you need to reduce medication. I cannot emphasise this enough.
I'd recommend you get your thyroid and vitamin results and post them in the Thyroid UK forum on this website.
I'm waiting on my antibody results and I asked to be tested for celiac too but I will ask about the others. I really wanted my meds lowering as I've felt really edgy the last few days so my body was telling me I'm not on the right dose.I've had my vitamins done and they were all really good apparently.
I've cut out gluton, dairy and soy and today is day 1 of the aip diet.
I'm testing again in 4 weeks so hopefully will pick up if under medicated x
Anxiety can be a sign of lots of things including over and under medication. It's not just the thyroid. If you've cut out gluten and then you run a celiac test, you could end up getting a false negative for tissue transglutaminase. You need to be eating gluten regularly before testing.
As with vitamins and minerals where you lie in the reference range can make a huge difference to symptoms. A person whose levels are in the lower part of the reference range will feel very different compared to if their levels were in the upper part. One key example is for iron.
Hi
I've had my antibody tests back and their through the roof. So confused right now, how can my tsh go down and my antibodies go down? I asked if I could have all my vits tested and t3 and t4 and was basically told no...thinkin getting on their nerves! Haha
Do you think it's worth paying to get tested? Regenerous labs tests for c reactive protein, Ferratin, vit d, b12, tsh, t3, t4, tbg and tpo for £75.
You seem to be very knowledgableon the subject so thought I would ask you.
Thanks x
As far as I know there isn't a clear relationship between TSH and TGAb and TPOAb. What are your full results? It's worth having a full test of results. What are your current symptoms? Are you still on 50mcg or did you increase it again to 100mcg? That's a huge drop. Normally when we increase it's done with 25mcg increments.
I would post your question here with whatever results you have for more input from the admins and other members:
Yeah I'm still on 50mg and I'm feeling really good at the moment but will get more bloods in a month or so to see how the medication is working out for me. Tsh was 0.5 and antibodies were over 1300 xx
Did you only test TSH and both antibodies? To answer your previous question, yes I always test privately if my GP won't do it. It's not worth not knowing and then suffering any consequences as I find that changing doses always changes things.
You're also allowed to get copies of your blood results including those for vitamins from your GP under the Data Protection Act. It's a really good idea to get actual results with reference ranges. If you're able to login to your surgery's website you can download them from there too.
He said they won't test my vitamins 🙄 Yeah i may get tested so i know for sure whats going on. Thanks x
I have hashimotos. My tsh was within normal levels without medication (close to upper level), but needed to be below 2 for ivf. They prescribed me levothyroxine and my first ivf cycle worked; I have now a 1 year old. Not sure if my clinic does steroids for more complex cases.Good luck!
Hi, I have Hashimotos and have undergone a FET back in September. Taking progesterone and Cyclogest and I am now 14 weeks pregnant xx
Can I ask if you done anything to treat the Hashimoto before your FET? I had a failed cycle in December with a 5AA blast (just didn’t implant) am starting a frozen cycle in March & am worried il have implantation failure again if it’s not treated. I’m on 25mg daily of levothyroxine My tsh level is within normal range but my antibodies are very high.
I'm having a freeze all on my next round and and they plan to put me on steroids. I would mention this to your hospital as it is meant to lower your antibodies and stop them attacking the embryo xx
Hi holly, no I take my 50mcg dose everyday as told by the doctor. I had a little fluctuate before transfer but nothing major. The private clinic checked me over before and made sure everything was ok. My diet cycle failed too with a decent grades embryo, second one took. The doctor told me it 99% of the time is down to a defective embryo regardless of grading. Sending you lots of hugs xx
Hi LouBoo85, I never write on here, although it's a fantastic supportive group, but reading your post struck a cord. I was considered for a long time infertile when I was diagnosed with Hashimoto. It's a difficult and at times, debilitating disease. It is also completely reversible. The failure of the IVF is very likely down to your TPO antibody count. Have you had these recorded? How much is there? I was at 2000. The problem with your immune system is that it is not strong enough and you need to do everything you can to build it up and rid yourself of the attack. Steroids damage your gut and make this worse. Most standard doctors in England don't understand or have any idea about Hashimoto. I suggest to you, before you make any decisions at all, read, read, read. Knowledge is power. DO NOT accept that the doctors know what they're doing, they don't always know. I highly recommend reading and looking at a woman's website who saved me and gave me my life and fertility back: Dr Izabella Wentz.
She is a truly amazing woman.
I hope this information is helpful to you, you must always make a decision that is right for you. Only YOU know what is best for you and your fertility. Much love and hugs to you
😘
Totally agree with above reply. Docs and even endocrinologists are clueless!!I was told there was nothing I could do
I had Hashimoto and a oaongul goitre. but my tpo levels are now less than 5! I've been on the AIP diet for 2 years.
Strictly off gluten, potatoes and corn
Ahh ok, i cant believe i havent been told any of this. What is an aip diet?Xx
Auto-immune Paleo. It's the most restrictive diet. Good to see what you may be reacting to and it's very tough. Results can be very good however you dont want to be on this long term as you can lose immune tolerance to all those restricted foods. This is what Dr Datis Kharrazian said. Not all foods are bad for everyone.
You're not supposed to be on it for ever.was on it for 6 months (hard but needed)I have reintroduced almost all food except
Gluten
Corn
Potatoes
And tomatoes
I'm trying the above from time to time but get reactions to them
😪It's now been 3 years...
I have however been able to reintroduce nuts, pulses ( although lentils do not agree with me still) and from time to time aubergine and peppers
The key is to realise what food create an immune symptom
Ahh ok so perhaps just do for a few weeks and reintroduce one by one?
For 30 days minimum. You'll need to remove a lot otherwise you might get cross reaction with food you haven't removed I had no idea I was so intolerant to corn
Before the diet I used to have joint pain, hay fever, insomniac anxiety and I was exhausted
Thanks for this, been doing my research and have written my shopping list for next week. Just struggling for meal ideas as I use rice, tomatoes and peppers all the time. So far I've planned 4 meals lol. Brekkie and lunch are fine as I can just have a smoothie and homemade soup...any inspiration would be much apreciated haha x
Yeah you need to think and plan ahead a lot!! it's hard but I promise it's so worth it.
I couldn't wait to reintroduce eggs after the 30th days
I ate a lot of meat and fish at the beginning. Insane quantity...but then you tend to reduce the amount after a while..
Some ideas :
Breakfast: sardines, beetroots and avocados
bacon/sausages, brocoli salad
My favourite snack were fried plantains with Marple syrup
You can also have sweet potatoes fries
a slow cook stew with grass fed beef, sweet potatoes and tunips
Sweet potatoes mash
Cauliflower rice
Roast chicken with root vegetables and then make a stock with the carcass and have it for breakfast with some mushrooms and green Vegs warmed up in the stock
Oooh thank you for this, love plantain so deffo giving that a go and the beef stew is a good idea!! I'm finding a lot of conflicting info about bacon/sausage...I though processed food was a no no and causes inflammation but isabella wentz hashimoto protocol book talks about bacon so don't know what do for the best haha!I'm really going to miss eggs 😢
Yes sausages/bacon not the best but you can remove them after the elimination diet.The elimination stage is already so difficult I wouldn't worry about eating extra clean as you don't have a lot to start with.
Elimination diet is done only so that you can then start to reintroduce food and see whether you have an intolerance or not. You should try the new food is small quantity for 3 days and then see whether you experience any sign of intolerance ( bad sleep, headaches, nausea, anxiety, tiredness,indigestion, diarrhea etc.)
For the eggs you'll need to start with the yolk first and then white.
Thankyouuuuuu, this is so helpful. Much apreciated!
Hi I'm considering the paleo diet but I've looked at the list of things I can't eat...tomatoes, eggs, peppers, potatoes, dairy gluton ,soy, rice....what the he'll do you actualy eat haha!
Hi, I have issues with my thyroid(hashimoto not officially confirmed) my last transfer (5th one) was taking steroids (25mcg) and 125 Levi thyroxine and all the other ones and I think it did worked wonders, I am now just over 13 weeks pregnant... I do believe it did make the difference... good luck xx
congratulations!! These success stories are making me feel really excited about my next round 😁
Are the steroids really necessary? How high were your antibody levels?
After 5 failed embryo transfers im willing to give anything they suggest a go really. My levels were 256 but im booked in for a blood test mon to see if my diet has brought them down at all. Ivf on hold due to covid at the moment so going to continue looking after myself and no gluton etc - I'm going to start the aip diet from Monday to see if there is anything else I need to aliminate....you never know maybe I can do this naturally 💪Xx
Oh I'm so sorry to hear about your experience. Along with changing my diet and reducing stress I also took Low Dose Naltrexone, LDN for many months. It is thought to reduce antibodies but it's probably a combination of everything.
thyroidpharmacist.com/artic...
I dont know if it was just that but my antibodies have come down from 200+ in 2016 to 12 and 42.
Wow that is really good! I will discuss with my dr...sounds like it does a similar job to the steroids. God it's like being a private detective isn't it haha!
Good luck, yeah it can be a bit like finding a needle in a haystack. However, most normal doctors here don’t have a clue about LDN. They’ve heard of Naltrexone but not Low Dose Naltrexone. If you get stuck I’d recommend seeing somebody at The London Clinic of Nutrition thats where I was offered it.
Thanks for this!!! Oooh new options I like it haha, definitely going to suggest to gp/ivf hosp
Xx
Yep you never know you might be able to get it from there
Hi
Did you get LDN on the nhs? Did the dr suggest this to you or did you suggest this to the doctor?
Thinking of calling on Monday to ask about this but just wondered how you came to be on it? Xx
As per the above, I got it privately and it was something my practitioner recommended probably for Hashimoto’s/autoimmunity.
Ahh ok, thanks
Hi Lou, I have Hashimoto disease, and I have been at St. Mary's a few years ago. They did a bit of a mess with me, including the fact that they didn't realise I had Hashimoto, so they didn't suggest any hormone replacement. I didn't get steroids either.When I moved to a private clinic, they immediately fixed my TSH with levothyroxine, and have me cortisone (prednisone) after egg collection. With first cycle, second FET transfer, I was pregnant, and now I have a 16mo DD ❤️
Good luck with your journey! 🍀🍀🍀
Hiya, can I asked how they worked out that it could be your antibodies attacking the embryos? I'm just licking my wounds after a failed 3rd IVF round, and am trying to work out where it could have gone wrong this time.I was diagnosed with hypothyroidism and possible Hashimotos after the first round of IVF 2 years ago. I conceived on that first round, but had a missed miscarriage.
On my 2nd round of IVF this summer, my TSH was 15 on the day of my embryo transfer, which I blamed for the failure, so took extra levo for this round, which kept the TSH down. I was getting it tested after the addition of every medication in case it was the IVF meds driving it up. This time everything was looking better than that first round (more eggs, more better quality blastocysts), but it's still failed. So this post got me a bit excited, as it could be the reason why this round of IVF failed in my case. My IVF consultant and the endocrinologist my GP referred me to are only concerned with the TSH numbers, and don't want to address the Hashimotos issue.
I’ve had similar issues. My Hashis has wreaked havoc with my immune system. My cytokine ratio is all messed up and NK cells elevated so I’ve just had a couple of Humeria injections. Need to wait another week to retest bloods.
With each of my FETs I’ve had steroids and intralipids, more recently I’ve also had tacrolimus.
I think my issues are related to my immune system already been all over the place and with the immunosuppressive drugs only given to me after transfer, it’s been too late by point. I’m hoping the Humaria has calmed everything down. I certainly feel better (despite having to shield because of the Humeria...which is exceptionally boring).
Can I ask how you figured all this out? I have no idea where to start to ask about all this!
Sadly it’s been a lot of trial and error. I’ve been using donor embryos out in Spain. I had one fresh transfer at day 6 that ended in miscarriage at 5+3 and then 4 further embryos ended in BFN, despite being on the clinics full immunology protocol. Checked ERA, was normal too. All the clinic in Spain wanted to concentrate on was the thickness of my lining. Didn’t make any sense at all to me as the only time my embryo implanted was when my lining was at it’s thinnest. Each subsequent transfer it was thicker.
I gave up trying to get any sense out of Spain and went to see another consultant local to me. He’s got a good rep dealing with difficult cases. Talked through my history and he said there was a couple things that needed checking (but that the underlying issue wasn’t the thickness of my lining), so I had a Hysteroscopy with biopsy and a load of immunology bloods...and several things pinged up in my bloods. They also removed a polyp during the Hysteroscopy.
I was/am pretty cross with my Spanish clinic as I’d asked several times if there could be anything else causing issues, particularly within the womb and I was told it was my lining and that I should lose a few pounds (which we all know is friggin difficult when you’re hypothyroid). I just couldn’t keep going at that point as I knew there was something else. I didn’t want to keep trying and trying and expecting a different outcome.
I go for repeat immunology bloods on 7th Dec and then if all is well, I’ll tell Spain I want to arrange my next transfer, although I want to follow my local consultants FET prep protocol. I suspect I’ll respond a lot better as the prescribe a lot more progynova than my clinic will (which is bound to help with the lining) and will start me on steroids and intralipids before transfer, to keep everything settled.
Aww Im really sorry things didnt work out for you last time...we will get there💪It's been a very long road for me, I initially had my egg retrieval in 2017 and I have had five fet in those years.
All my embryos were high quality but I only got pregnant once in that time.
Last year they started looking at why I was having recurrent implantation failure and did a blood test testing me for everything under the sun. All my vitamin levels were fine etc but my thyroid was really high so they put me levothyroxine and i finally got my levels below 2 and had my final fet but it didn't work so they decided to test me for my anti bodies which is high. At the time they said that it is just treated with Levo but they called me this week to suggest the steroids for my 2nd round.
I'm sooooo grateful to be getting a second round as I was only entitled to one before I moved to stockport and now we've got a new plan I'm feeling really positive.
I would speak to your hospital as they certainly took their time considering that hashimoto could be effecting things for me🙄
Good luck xxx
Thanks so much both LouBoo85 sazzle2680 . Its driving me mad, we're paying for each round, you'd think they'd give a rats ass for 4k a pop! @sazzle2689 would you mind sharing details of your UK consultant via PM please?
Get them told beeper one!!I always thought going privately was 10k plus...I'm pleasantly surprised at 4. Where do you live?
West London. Our clinic was set up by Robert Winston, and does NHS & Private in the same clinic. I was surprised at the price, but looking at a couple of other places that were charging 6k plus, we worked out that they were adding treatments that weren't worth it, and I could forgo the free cappuchinos and fresh flowers in reception for the sake of 2k 😉
Haha no way. Well private might be an option after all if it doesn't work out this time.Xx
Really hoping it works out for you this time. When going private, it helps living in/close to a big city, there's more more competition for your buck.
How high were your antibody levels? There are other ways to get them down.
I also wanted to say be careful with steroids. The autoimmune response is your body telling you something. Find out the cause and address that rather than telling the immune system to quieten down with steroids. I'm not trying to put you off what your doctors are saying but at the same time doctors and endocrinologists aren't trained to treat Hashimoto's. If you study the work of Dr Terry Wahls who has MS - another autoimmune disease you'll see this requires a different approach. She is one of the few medics who realised that the conventional drug approach doesn't help everyone and changed her life through her own researched and tested dietary and lifestyle changes.
Thanks for this! I've got a few months before I can get started with ivf again so I've ordered that hasimoto protocol book and will give that a go while im waiting. Did you find out what caused inflamation for you easily? X
I would say stress has been a big root cause for me. A good few months will be a decent amount of time to get things moving. Keep us posted.
Myself I know someone who was in similar situation. She underwent IVF in Poland (failed), 2 IVF with donor eggs (failed)in Czech Rep, and then IVF in another clinic in Poland, and got success with them (twins - a boy and a girl)
Can I ask if you’ve had your next round yet? How are you getting on? I had my first failed fresh cycle in December with a 5AA blast (failure to implant) & am due to start a frozen cycle in March - my TSH is within normal range now but my antibodies are very high indicating Hashimoto. My clinic are not interested in this and have said as long as my TSH is okay it won’t affect my treatment. I am worried that without addressing this I will just have another failure to implant cycle. I’m also extra cautious as the reason for IVF in the first place is due to low AMH (I’m only 28) so I really don’t want to waste any embryos if there is something else going on!
Hi no everything has been put on hold because of covid but I'm ok with this because I am putting lots in place to look after myself at the moment...yoga ,meditation, gluton and dairy free diet and I am also seeing a chiropractor. Trying to focus on my health at the moment and hoping everything will fall into place at the right time. If I wad you I would mention steroids to your hospital as should lower your antibodies xx
Hi, I had tests done (I had to push for them) after a failed fresh and failed FET transfer. We had recurrent implantation/miscarriage bloods done and it indicated that I was positive for ANA (anticuclear antibodies) - the results came back the day prior to my next fresh stim cycle and I was put on hydroxychloroquine immediately - it all happened so fast and to be very clear I'm not sure what this means for me long term if anything, I'm very healthy, so it was a bit of a shock - but also a relief that there was a 'possible' reason I wasn't getting pregnant. The consultant said that the antibodies attack foreign cells in the body. We put a 5AA and 4AA back in a few weeks ago, and I just got my positive test a few days ago. I know it's not the same diagnosis or prescribed drugs, but wanted to offer reassurance, that treating the root cause might be the thing that if not in your next cycle, but a future cycle gives you the result you want. All the very best! x
Ahhh congratulations!! Amazing news! So is hydroxychloroquine LDN?? I've been told for my next round of ivf they will put me on steroids but nobody has mentioned LDN?
Thank you! I'm not sure if it's a LDN - I don't know what that is. Hydroxychloroquine is an antimalaria drug but is used for things like lupus and rheumatoid athritis also. One of my friends took prednisolone (a steroid) as she was positive for NK cells. So far she hasn't been successful, but is in another cycle at the moment. I hope it works for you! x
Hey, I’m just wondering if you had another round yet and weather it was successful? I’ve just found out my second round (FET this time) with another 5aa has failed - BFN again. Really had my hopes up this time as I had my thyroid & antibodies under control. I am now moving clinic to CRGH & hoping to get some more testing as I’m convinced my immune system is causing the embryo to fail to implant! looking for some success stories!
Intralipids prior to & during ivf?
Did you conceive naturally after ivf
IVF & Bereavement :-(
Ivf
Breast lumps and IVF drugs
