So scared of starting PTU

[SophyWophy]

I have a hot thyroid nodule which makes me hyperthyroid. I had RAI at the end of 2017 (don't want surgery) and while it greatly improved my condition I am not fully cured. I am 38 years old and just found out I am pregnant. So my doctor will be changing me from methimazole to PTU, half a pill a day. I am so scared of taking it though, due to the stories about permanent liver damage. I know it's rare, but keep thinking it will happen to me. Any words of reassurance?

[PurpleNails Administrator]

It’s quite unusual for the RAI not to result in eventual hypothyroidism, although not resolving the hyperthyroidism is a known possibility. Did medics suggest additional treatment. Repeat RAI will be out of the question now you are pregnant and while your child is young it will be hard to adhere to the isolation requirement.

Did you doctor say how long you will be taking PTU it might be safe to return to the medication you are comfortable with later in your pregnancy.

Most manage really well on PTU and it is given to those who have reactions to methimazole. Be vigilant for side affects and remember they are rare.

Were you on a low dose of methimazole?

[SophyWophy in reply to PurpleNails]

Thanks for your quick reply.

I did try a radio frequency ablation treatment last year, but unfortunately it didn't go well. The doctor said that I had a panic attack but I think I had a bad reaction to the anesthesia (I think it was improperly administrated) as I fully lost control and passed out. In any case, afterwards my blood tests still seemed to be improving and because of my age I didn't want to delay TTC any more. So we decided medication would be the course of action for now.

I will be on PTU for the first trimester, then will switch back to methimazole. I was taking 3 pills of methimazole a week, now will be taking half a pill of ptu a day ( so 3.5 a week).

[PurpleNails Administrator in reply to SophyWophy]

Did you go the RFA route to avoid surgery & repeat RAI?

That experience sounds terrible, usually RFA is reported quite positively. Here in the UK only a few hospitals offer the procedure.

How frequently is your TSH, FT4 and FT3 monitored? Your doctor might need to adjust your dose. Reviewing FT4 & FT3 essential, don’t allow it be done by TSH alone.

Have you had key nutrients tested vitamin D, folate, ferritin and B12. These need to be optimal for thyroid and pregnancy.

Finally were you thyroid antibodies checked at the time of your diagnosis?

[SophyWophy in reply to PurpleNails]

Yes, I was trying to avoid another dose of RAI and I really don't want surgery. I was so excited the morning I was going to get RFA, but unfortunately it didn't work out. The doctor claimed it was a panic attack, and while I'm an anxious person I had never experienced anything like it. I did some research afterwards, and found if the anesthesia is administered in an artery, it could have the effects I experienced. I truly think that is what happened. However, as so few doctors perform this treatment here ( I am located in Lisbon, Portugal) trying this again is out of the question.

Normally I monitor my TSH, T3 and T4 every 2-3months but now the doctor has asked me to get blood tests in 3 weeks given my current condition. I have never had any nutrients tested- I don't think they do that here. I am taking folic acid supplements though.

I did get tested for antibodies, and was all negative.

A little off topic, but I've been trying to do some more exercise lately - nothing too intense, just trying to loose some of the weight I gained after RAI and to build a bit more muscle. Do you think that could have a positive impact on the hyperthyroidism? Do you know of any connection between muscle mass and tsh?

[PurpleNails Administrator in reply to SophyWophy]

Even the positive RFA stories I have heard have said they required additional treatments. You must be so disappointed & I sorry it didn’t work out for you.

I think you need more frequent testing, 6 weekly is fairly standard and especially important after any dose change. Essential to have key nutrient done, many are refused full testing and forced to used private firms. Is this an option for you? You can always post any recent result and members will advise. Always include ranges as they vary between labs.

Commencing new exercise regimens & trying to lose weight is not recommended during pregnancy. Try to maintain your pre pregnancy activity rather than increasing it, only take gentle exercise. Allow extra time to warm up before and cool down afterwards. Drink plenty of water and other fluids and be careful not to overheat.

TSH is not a hormone, and doesn’t cause any symptoms. TSH is produced by the pituitary to signal the thyroid to produce new hormones. It’s the hormones which cause symptoms, usually the high levels causes weight-loss, despite increased appetite. Did you lose weight when you were hyper? (I didn’t). Low levels causes weight gain. This includes low levels caused by more methimazole than necessary & doctors often allow levels to drop low or even below range because they judge thyroid by the TSH. This is why its important your are reviewed by Free T4 & Free T3. Unfortunately the TSH can take a long time to catch up.

Being either too high or too low can cause muscle aches and pains.

[Lora7again]

Have a look at Elaine Moore's site she had RAI and she might be able to advise you.

Here is a link

elaine-moore.com/