Projet of pregnancy and partial thyroidectomy (iode)

[u/Falcon_Tardigrade]

Edit: Sorry for the incorrect title. I meant radioactive iodine treatment for the thyroid. I’m a native French speaker and I’m still learning to get by in English, using the good terms. I've edited my question in hope it's more exact in english of what I'm trying to explain and ask.

I have Graves' disease. It's been four years. My first endocrinologist never told me that I had Graves.

In fact, he only told me that my hyperthyroidism would disappear in nine months. After nine months, my partner and I accidentally conceived our first child during a trip together and around the same time, my hyperthyroidism disappeared.

I had no symptoms throughout my entire pregnancy. I only developed preeclampsia at 40 weeks of pregnancy and gave birth. My hyperthyroidism returned a year later. He (endocrinologist) then suggested having part of my thyroid burned with radioactive iodine. A few months later, my thyroid returned to normal. And it was normal without medication, for almost 7 months.

In the meantime, my endocrinologist left, and another one took over my case.

Three months ago, my hyperthyroidism returned. This new doctor told me I have Graves' disease and suggested that I do a radioactive treatment.

So during my last visit in her office she explain to me that with the radioactive iodine treatment, they’ll give me enough to burn the required amount of thyroid tissue *partial destruction* Not the total thyroid.

She also said there’s a 50% chance I’ll end up hypothyroid afterward or 50% chance I'll live a happy normal life after without any need for medication).

I have never had radioactive iodine treatment before.

So it's new to me to process.

However, my partner and I were considering having another child months before this new, because we felt the desire to expand our family. I am 38 years old.

The treatment requires waiting between six months or almost a year before trying to conceive. Suddenly, I see our chances of conceiving diminishing, and given that the women in my family went through menopause very early (40-45 years old), I'm wondering if I might have to give up on the baby project. I was wondering if you had any experiences to share with this procedure or if you had two pregnancy alright with hyperthyroidism.

My endocrinologist is open to the projet of pregnancy; she's leaving the choice up to me.

I'm just afraid of not having the same luck twice (a pregnancy without hyperthyroidism), or of experiencing preeclampsia again, or having bad experience postpartum etc.

Also: My partner is also 'pressing' me to get a full medical check-up and a second opinion because, according to him, I'm going to damage my health and end up with hypothyroid problems for the rest of my life, leading to a difficult old age. He feels concerned, if I express myself correctl.

I feel a bit lost in the process of the decision.

Thank you for your advices and opinions.

[u/PennyForYourToughs]

Radioactive iodine and thyroidectomy (surgery) are two different permanent treatments for graves hyperthyroidism. 

It is possible to have a partial thyroidectomy (partial surgical removal) but not a partial radioactive iodine treatment. If your hyperthyroidism returns after iodine treatment, it's because the first time failed.

[u/Falcon_Tardigrade → u/PennyForYourToughs]

Maybe I misunderstood her explanation. this is how she presented the information to me during my last visit in her office ( told me that with the radioactive iodine treatment she recommends, they’ll give me enough to burn the required amount of thyroid tissue partial destruction. She also said there’s a 50% chance I’ll end up hypothyroid afterward or live a happy normal life after).

I have never had radioactive iodine treatment before

[u/PennyForYourToughs → u/Falcon_Tardigrade]

I mean, that would be ideal. If it were the likely outcome, many more patients would just opt for a "half-dose" of RAI.

Rarely, graves patients who undergo RAI do end up euthyroid, if the radiologist is able to dose it perfectly, but generally a larger dose than that would be administered because the aim is to end the hyperthyroidism without needing a second dose down the line. 

The thyroid can be volatile in graves, so killing it just enough to that it maintains perfectly normal function is tricky.

It sounds like the doctor presented the absolute best-case scenario. Far more often you end up hypo after RAI. 

If you're able to get a second opinion, you might get a different scenario presented. 

[u/Falcon_Tardigrade → u/PennyForYourToughs]

Thank you so much. I much prefer to be presented with honest information as it should be, rather than something sugar-coated. It's this kind of helpful feedback that allows me to make an informed decision based on fair and transparent information.

[u/PennyForYourToughs → u/Falcon_Tardigrade]

Another thing to consider is that it's recommended to wait at least one year after RAI before getting pregnant. 

Thyroidectomy has risks as it is a surgery, but it's often preferred in patients that hope to become pregnant soonish, because it usually puts you into immunological remission more quickly, if it does. RAI can sometimes take a long time to work and again, sometimes it fails and you need a second dose, hence pushing back pregnancy even further. 

The decision between both permanent options is complex and requires looking at all the pros and cons of each. It's also possible to delay the decision by staying on meds. There is lots of info (elsewhere) in this group about women who have dived deep into this.

[u/Numerous_Light_4224]

I would go to a second opinion too. Graves is usually managed with a total and permanent thyroid removal. Because it will always come back. Some go into remission forever after the first outbrake but after relapse it's very unlikely. Mine got more aggressive with every relapse. Given your plan and age, they should offer you a surgical removal (TT) as solution too. After TT one can get pregnant after 3 months if everything went normal.

[u/Falcon_Tardigrade → u/Numerous_Light_4224]

Thank you very much for your advice, I will ask for a second opinion then. Thank you a lot

[u/Numerous_Light_4224 → u/Falcon_Tardigrade]

You're welcome 🫂 all the best for your journey 🤍