Graves is coming back - but TTC #2

[cirillaofcintra]

Hi all, any similar experiences? How did things work out for you?

I first had Graves back in late 2018, did 18 months of carbimazole treatment as standard and went into 'remission', have been fine since. In that time I conceived and had my DD, now 20 months old. The Graves never seemed to return after she was born, however, it does now appear to be. But I am only 'subclinically hyperthyroid' at this point. My TSH is <0.01 (undetectable) but my T3 and T4 are in the normal range although at the higher end of normal. My TPO antibodies have been tested and they are ~250 so high. I am not under an endo yet, this has all been discovered by the GP and they have referred me to endo but still waiting. I'm wondering if I've bumped down the list a bit because I'm only subclinical right now.

Regarding the TTC - DH and I started trying for #2 in March and I fell pregnant straight away, but unfortunately we have just suffered a loss (missed miscarriage) with baby not making it past 6 weeks. I am now panicking that it was the autoimmunity/thyroid levels that caused it.

Has anyone gone through TTC while having Graves and did you take PTU? Were you advised not to TTC? I suppose we could wait a bit to TTC but I'd really hoped for a <3 year age gap. :(

I did and successfully conceived dc3 while on PTU. I was actually advised I wouldn’t be able to conceive easily because I was on a high dose of PTU and my T3 and T4 were way out of range (recently diagnosed at that point). I actually conceived very quickly which was lucky because I was running out of time age wise! I was up and down during my pregnancy and on and off medication but they tested my bloods every few weeks and I had extra scans. DD had to have some blood tests as a newborn but that was all.

Thanks @Misshaped that is super helpful. I think I'm going to ask to go on PTU to get my TSH up a bit and try to sort out the antibodies, nip it in the bud before my T3 and T4 start to go haywire.

That sounds like a good idea. I think I was on 30mg. I was diagnosed and fell pregnant 3 months later so still on the higher dose. My TSH was very low when I was diagnosed and the PTU brought it back up again pretty quickly. I actually went straight to underactive when I conceived as I was over medicated and the pregnancy improved things. I think the change in your immune system during pregnancy helps a bit. I was taken straight off my medication for the first few weeks and then back on later in the pregnancy so make sure you’re getting very regular blood tests.
Sorry for your loss. I hope you manage to conceive again soon.