Family planning and treatment options (Graves)

[TrashPanda31]

I am planning on trying to get pregnant in the next year or so. I don't know if I should have permeant treatment (Radioactive Iodine (RAI) or surgery) or stick to ATD (antithyroid drugs) before hand.

Hospital doctor/nurse have given me a standard RAI leaflet and explained some of the pros and cons of all the options. They seem to be pushing RAI treatment, saying that I will probably have to have it eventually. No definitive treatment has been subscribed, the decision has been left with me for now.

I got diagnosed with graves disease about 3 years ago, diagnosis was confirmed by blood tests and the presence of antibodies. I started off on a high dose of carbimazole (CMZ) which slowly got reduced. The couple of times I came off the drug completely I relapsed. My thyroid levels at the moment are stable on 5mg CMZ, with suppressed TSH. Bloods checking overall health have come back fine. I am a bit reluctant to change treatments at the moment as feel relatively well and results are stable.

When I am hyper I do get itchy/tired eyes and become sensitive to sunlight. Will this be an issue for RAI?

Any advice/experience around this topic would be much appreciated.

[SilverAvocado]

TrashPanda31,

I think the biggest thing to think about is that after you have RAI or surgery you will almost certainly be hypothyroid and so dependent on thyroid hormone replacement in tablet form.

Some people do well on hormone replacement, and some people do much worse, so it is a bit of a roll of the dice for how well you will be in the future.

A symptom of being hypothyroid is that it can be difficult to carry a baby to term, and common to have several miscarriages. The medical support is always quite bad, even for women who've had a very bad time of previous pregnancies. In that respect, it can be safer to plan a pregnancy while you are stable.

I am not too knowledgeable about the specifics of Graves treatment, so hopefully others who know more about it will chime in. The only thing I'm aware of from the forum is that doctors do tend to push people towards RAI or surgery. Part of the reason for this seems to be that once you've had that those treatments you will be off their list, and your hypothyroid treatment will usually be offered by your GP.

Another little thing is that if you have RAI you will have to wait a certain length of time to start trying for a pregnancy so the baby won't be harmed by the radiation. I had RAI for cancer and it was a year to wait. It may be you'd have a lower dose, which could be a shorter time.

If you think you may have Thyroid Eye Disease I believe that RAI can cause problems. If I'm remembering correctly this is one of those things doctors aren't too dilligent about. Again, I'm not too knowledgeable about these things so I'm just repeating vague memories of things I've heard on the forum But definitely something to look into and make sure for yourself.

[TrashPanda31 in reply to SilverAvocado]

Thank you for your reply Silver avocado.

You have given me something to think about regarding carrying a pregnancy and being hypothyroid. I will very much bare that in mind.

Last year though when I did go hypo for about 3/4 months the only good thing was that it made my periods more consistent.

[kittyelen]

Hi

I have Graves and my endo said as I would be family planning in the next few years he would advise against radioactive treatment

Yep I was surprised too and relieved actually endo who don't want to push for it, it would interfere with fertility.

BUT I am now over the 35 mark so I only have the next few years so they take age into account too, they would put me on PTU but atm my levels are borderline and I am med free since coming off Carb.

I don't know how much it affects with fertility but by the sounds of it the next few years considering my age and the fact they will not recommend it for me if I were to relapse as I am still being monitored since coming off the Carbimazole.

I think it is very complex too, when you have RAI you have to isolate yourself from the family and use separate cutlery etc so if you have a baby first then RAI later there needs to be a lot of planning as you will have no contact at all with the baby for 6 weeks (I think) so imagine even a 2 year old this would be difficult. At the end of the day though if you want a baby in the next year or two then maybe that is the most important thing, and it is not worth putting that on the back burner as you don't know if you will have any issues conceiving yet.

I hope I have not scrambled your brain but there is a major decision if you do go ahead for RAI would it be best say 5 years down the line once you have had a baby? Or if you have it how long would it affect fertility to put off having a baby?

This is a really good article about a lady with Graves who has had 2 babies, she actually mentions with 2 young ones radioactive treatment was not an option:

btf-thyroid.org/kate-having...

[TrashPanda31 in reply to kittyelen]

Hi kittyelen,

Thank you for your response and the article. It has been very helpful . It's interesting the points you have made about fertility after RAI. From what I have read I thought RAI didn't have an impact on your ability to conceive after everything had settled down, I realise nothing is that straight forward. At the moment I feel the healthiest I have for a fair few years so maybe now is the best time to try and not roll the dice on RAI just yet.

I am 29 and as I knew having Graves disease would make it harder to conceive I have tried to give my self a bit of time to try and get my thyroid levels and general health as good as possible.

Taking in to consideration the need to isolate and waiting time before trying to conceive I did think it would be better sooner rather than later if that's the route I wanted to take.

Everyone I have spoken too so far has had permeant treatment after they have finished having children rather than before. Would be interesting to hear someone's experience of trying to get pregnant after RAI.

[kittyelen in reply to TrashPanda31]

I don't know, tbh I never asked my endo consultant but he said due to if I try for a baby and my age he would not advise it. Maybe it takes some months to settle down, he is the consultant so higher up than the nurse I have my appointments with so I respect that he was so kind to look at the wider picture.

Just checked online it says women who receive radioactive iodine therapy are generally advised to avoid pregnancy in the 6-12 months after treatment, due to the risks of radiation to the eggs within the ovaries. So the age things explains it! I have 3-4 years before I am nearly 40! It does also say some can have irregular periods after RAI so there is a lot to review, I would seek more advice if I were you, I also have suspected PCOS I may have issues anyway but you have to weigh things up as at the end of the day if having a baby is the priority you need to do what is right for you x