Help 😩

Hi, I'm 35 and have got diagnosed with Graves April last year. I have been on block and replace for 14 months but came off on the 1st of September because me and my partner are going to start ivf I was told by my endo to come off completely so I'm 20 days in and I feel like crap again ears ringing pins n needles in my head feel like I'm racing 😞 So I'm really disheartened because I'm due my bloods to be done on Monday to take to the ivf centre to make sure I'm (stable) to witch I'm thinking I won't be due to my symptoms. I know because of me wanting to go forward for ivf they are gona push the radioactive pill or surgery.. can anyone offer me any advice loosing all faith 😢

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11 Replies

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  • Hi there, sorry to hear that your feeling this way. I don't have any experience of graves. I have had my thyroid removed and am on levothyroxine. When you say been on block what do you mean.

    I have had radio active iodine and I would defo check with your practitioner as after this I wasn't allowed to ttc for 6 months to a year. Although my circumstances were different as I had thy cancer . I do know that if you are on Levi then surely you would have to keep taking for conception. This is very important. Is this what you mean?

  • Block and replace is where Iv been taking carbizmol to block by thyroid then Levo to replace the thyroxine at a normal level. My ivf dr and my endo are communicating with each other and have stated if I choose radioactive pill I have to wait six months witch is fine with me as long as the centre keep my ivf spot open for me as I'm a bit worried about having the operation, any advise on these would be greatful 😊

  • The only thing I can say is that I found it took my body a while to realise that it was 'back to normal' when I stopped my block and replace.

    There's not really much you can do without knowing your results so just hope that maybe you're feeling rough while your body acclimatises. I'm not sure I felt as bad as you seem to be feeling.

  • Iv felt fine up till the last week I'm hoping and praying this is just an affect because Iv gone pretty much cold turkey and my results come back normal 🙏🏼

  • Sorry you are going through Graves and wanting to do IVF. I am hoping you are just having a sort of adjustment reaction and your bloods are fine. But if not, what exactly have the endo and IVF team said about Graves' medication and pregnancy? A quick internet search seems to reveal that some people are pregnant while on the alternative to carbimzole, PTU, so pregnancy itself and medication does not seem forbidden altogether. Is the problem the IVF procedure/drugs while on thyroid medication? I would want to know what is specifically the problem with being on PTU while doing IVF before I necessarily chose radioactive iodine or surgery because if PTU and IVF are OK together, it might actually be quicker to stabilise your thyroid levels (if indeed they are changing) on PTU than the alternatives. I don't know that is the case as I know nothing about this but that is what I would want to ask the endocrinologist.

  • Thank you so much for answering, I have seen a few people have adjustment issues after stopping the meds I'm hoping this is the case. As at as I can make out the ivf centre are unsure of the complications with ivf and graves so they looked to the endo to make the final call and he advised me to come off block and replace and make an app for my bloods to be done after a month and if I stayed stable it would go ahead but if not he wanted me to opt for surgery or the radioactive pill & to be honest I'd rather not go through either. I had heard or an alternative to to carbizmol but my endo never mentioned switching drugs.

  • Think you should do some research about taking PTU instead of carbimazole so that you can go your endo prepared. I can see why you don't want to be pushed into having RAI or a thyroidectomy, I kept being offered it should I relapse but I had a word with my GP and said it would be an absolute last resort and that I would want to go back in B&R should I relapse.

    Don't worry about going cold turkey - that's how you stop B&R - one day I was taking 40mcg carbimazole plus 100mcg levothyroxine- next day - nothing at all. Have to say it felt weird but it was ok. Like I say, I was so overactive for so long I don't think my body knew what it felt like to be normal.

    Once you've had your bloods done you will have more of an idea of what's going on, so do your research into pregnancy and PTU / carbimazole etc now before you see either your endo or the ivf people and you can take you ur evidence with you. You could always ask for a second opinion from another endo.

    It might be worth starting another post asking if there is anyone out there who has become pregnant while being treated for Graves and see if there is any response.

  • Ahhh thank you so much for this. I will have a look into PTU and pregnancy and get it all read for our next app 😊 It hard to get people to understand what's goi g on and how I feel six steps forward and 20 back ATM. You were on the same dosage Iv been on I'm praying it's just my body adjusting to no pills x

  • I also hope adjustment is the case. But to be on the safe side I would read up about PTU if you don't like the sound of the others treatments at this point. I did some reading on here about radioactive treatment and thyroidectomy and got a bit depressed that it does not seem to be a quick perfect fix (I have hyper, probably thyroiditis though my original diagnosis was Graves'). For example, after radioactive there seem to be people who stay stable but others whose levels slowly decline through to hypo and they don't necessarily feel well on thyroxine and therein starts another whole thyroid chapter (sorry, feeling a bit ill and negative tonight). So there might potentially be months of sorting out post radiation changing levels and then possibly hypo medication instead and so forth. While hyper medication can also be fiddly, it could potentially be the lesser of two evils time-wise so I would push for more info about PTU and pregnancy. On the other hand, I know nothing about the risks of a pregnancy while one has Graves' and on PTU and perhaps the endo is of the firm opinion that hyper drugs really aren't a good thing in pregnancy even if they are sometimes used. But even so, I would like to hear that from the endo rather than no info on PTU at all. Hopefully there will be some info/stories out there somewhere from someone else who has been in your situation. Good luck for your next blood test, it would be great if your levels are fine.

  • Thank you so much Rocca

    Yeh I'm going to look into things more this week as my next app at the ivf clinic is the 4th of oct not long 😬 Hopefully I can find some helpful info and pray my bloods are normal and I actually have some good luck for a change!!

  • The ivf process is tough going, I personally wouldn't recommend starting it until you are stable. Speaking from experience here !

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