Graves Disease, RAI and having babies

[AndOnAndOn]

I've been presented with the options of either surgery or radioactive iodine treatment for Graves Disease/ hyperthyroidism.

Reading about the pros and cons of each, it appears that RAI is a better option. I'm really not a fan of surgery.

However we've recently been discussing children and although no immediate plans, when RAI won't happen for 4-6 months, then I am advises not to conceive for 6-12 months following, it looks like the earliest would be the middle of next year before we could safely try.
And that's assuming all goes well with both the treatment and conceiving, which is entirely unlikely.

I'll be 36 by then and it just feels like time is ticking now I've actually thought about it! Guess I've never planned serious stuff that far ahead before.

Guess I'm wondering if anyone else has been in a similar situation with any thoughts??

Many thanks

Do you need to take the RAI or surgery decision at this stage?

Although consultants seem to like to steer patients to one or the other within about two years, you can actually take carbimazole, or the alternative drug PTU (which is compatible with PG and BF) for years.

If you go for either RAI or surgery, you will inevitably become hypothyroid very quickly and you will then have the problems that hypo women face, trying to get doctors to diagnose and treat you properly and to adhere to the NICE guidelines that say your TSH should be below 2 for TTC and PG. If you look at the Thyroid Issues and GPs thread from last week you will get a taste of what this can be like.

It is highly possible that your doctors have not thought to tell you this and have fobbed you off with 'you'll just need to take a pill every day and you'll be fine', which is at best an over simplification and at worst, completely incorrect.

The implications, particularly of RAI, are lifelong and it is really not something to be entered into lightly. Read, learn and if necessary get a second opinion.

Good luck.

Thank you for your reply RockinD, to be honest I didn't realise that I could continue with medication, it was generally presented that I was fairly severe and needed a resolution.

If you don't mind me picking your brain- naively I thought it was as simple as a tablet a day to counteract the hypothyroidism, would you mind sharing your view/knowledge on why this is not the case?
All very confusing!

Thanks

For some reason, consultants seem to want to push Graves patients to TT or RAI fairly quickly, ignoring the fact that, if you have Graves, the problem is not actually with your thyroidm but with your immune system.

If your priority is to have a baby, you need to find a consultant who understands this and can ok with you to achieve this.

Treating hypithyroidism may be straightforward, but for many people it is not and you cannot assume that it will be straightforward for you. You owe it to yourself to find a way of dealing with this situation so that you can achieve what you want.

Does your current consultant know that you want a family?

Please make sure you Google fetal Graves disease. This is a condition that accelerates the growth of the fetus via maternal autoimmune antibodies called TRab.
They attempt to counteract this condition (which can cause miscarriages too) by giving the mother doses of anti thyroid drugs to reach the fetus (even if her own thyroid is long gone).
Endos treating young women with RAI and incomplete TT fail to mention that RAI increases these TRAB levels in a patient -- sometimes for 30 years or more.
This is why many countries have stopped giving RAI to anyone planning a future pregnancy.
Look up the study that followed the TRAB levels in 3 types of treatment fir 5 years:
And keep in mind that these are also the antibodies that cause TED and Graves dermopathy. (TSH receptor antibodies).
m.eje-online.org/content/158/1/69/F1.expansion.html

Look at any reputable online thyroid forum and you will see the posts from people who have had RAI or TT. The ThyroidUK forum at www.healthunlocked.com is a good place to start.

Otherwise, just reading the Thyroid Issues and GPs thread on this board will give you some idea of what a minefield it all is.

Thank you for your comments. I have spent a week researching and though not much clearer, I am now aware that there is more to it than I initially realised. I shall keep researching.....