[enid]

#1059613

Hey all, newbie to the forum here. I’m glad I found it!

I was diagnosed as hyperthyroid with a fairly large “complex nodule” (non-cancerous), in early 2009. I am stubbornly adverse to taking medications for pretty much anything. My endlessly patient doctor let me try options through my naturopath and my TCM acupuncturist for 2 years, which controlled symptoms but didn’t actually change my labs, before I finally gave up and agreed to try another endo early in 2012 (did go to one endo after the initial diagnosis who was SO UNBELIEVABLY RUDE to me, particularly during the nodule biopsy, that I said some very choice words to her and never went back).

I have been on methimazole since last January 2012 with no ill effects and am apparently in normal range with my labs, with the nodule pretty much gone, as of Dec 11, and actually feel hypo. I also feel like I get about 2 hrs of sleep a night, even though I get 8 – 9. Anyway, to the point of all this rambling, I would like to try getting pregnant, BUT I am terrified, phobic almost, of the liver risks with PTU, which is recommended for the first trimester, and of course risks to the fetus associated with too little or too many thyroid hormones.

Talking with my doctor and the more recent endo (both of whom I do like and trust) about monitoring and risks has not given me a tonne of reassurance that I’m not going to turn yellow and have my liver explode while walking down the street one day (sorry for the hyperbole), or that, should I get pregnant, I’m not going to grow a human that is simply going to have a gauntlet of problems because I had to take anti-thyroid meds, or didn’t take them, or took too many, or not enough. Searching the internet for information is basically like opening a Pandora’s box ranging from vaguely confusing to all-out terror inducing! And it’s all “MAY cause”, “linked to”, “risk of” It’s like everyone really just wants to make sure their butt is covered without giving any actual answers to anything.

Can anyone please point me in the right direction of a reputable resource AND/OR offer any insight AND/OR share their own experiences (I guess I’m also needing some compassion and/or empathy right now)? I can’t emphasize enough how big a step it was for me to take the methimazole in the first place, and now having to switch to PTU, even if for only a short time, is just very stressful.

[Bobbi]

#1176171

Hi, Enid, and welcome to our board. I know you will find lots of supportive folks here.

A word of caution about the internet: there’s a lot of really bad information out here. It can make you crazy when you are trying to navigate the pros and cons of treatment options. Try very hard to use medically wise sites….i.e. the type that are recommended links from here. We work with doctors to make sure that the information that folks get is at least reasonably reliable. And, you need to be able to filter fact from opinion on boards like ours. If an opinion is offered, fine. But check it with your doctor rather than treating it as “fact.” Your doctor is your first line of defense for good opinions.

I’ve been here a long time. I was diagnosed in 1996, and took PTU for a couple of months or so, before deciding to do RAI. I’ve been healthy ever since thyroid-wise. I’ve seen people come and go who have done all of the treatment options successfully. The folks I’ve seen in these years who have not done well have typically been people who have not listened to the medical professionals, or who were diagnosed too late (after the hyperthyroid condition had damaged their hearts, etc.)

I understand your aversion to taking the drugs because I am very much the same. That was one of the reasons I chose to remove my thyroid rather than continue on the PTU. So, perhaps it would help you to think in “slightly” different terms about the decision facing you. That “slight” difference is that you have a choice, and that you are, in fact, making your own choice. (I know—your real choice would be not to have Graves in the first place, but we’re dealing with reality here and you don’t have a choice about that.) But given the Graves’ reality, you DO have choices available to you, and they all offer a very reasonable possibility for good health. There is a good reason — for your baby’s sake — to choose to take PTU for the first trimester. Yes, the data on PTU has shown some truly serious liver issues is a very small number of people. Our doctors prefer to use options that offer the least risk medically, so PTU has suddenly fallen off the map as a treatment option of choice based on the accumulated data about it. But during that first trimester, it is still the antithyroid med of choice.

But you do have other choices as well — although I’m assuming you have chosen not to consider either surgical removal of your thyroid or RAI. But those ARE reasonable choices for you to consider. Being on replacement hormone carries none of the risks to the baby or you that being on the antithyroid meds does.

So, the “slight” difference I’m suggesting is for you to focus on the fact that you have choices that YOU are making. And that may make it easier for you to live with the choice that you ultimately make.

[enid]

#1176172

Thank you Bobbi!
The internet is such a weird universe, isn’t it? As I said, a Pandora’s box of wild misinformation. My doctor and endo don’t feel that RAI or surgery are the appropriate options for me at this point, which is nice in the lack of pressuring me way! I am glad that even though I didn’t go with the medication right away that I have not suffered any damage to my heart or otherwise! I was very careful with the other options I followed first, and was also following a heavy regimen of yoga, which I love.

It’s hard when you want to bring another human being into the world, and you know there is a responsibility to reduce harm and possibilities of bad effects on that person before they’re even a reality. A midwife friend of mine who also has an autoimmune disorder and is pregnant, also suggested talking to an obstetrician that she knows who works with high risk pregnancies, and was helpful to her through her pre-conception concerns, so I am working on getting a reference through my doctor.

This website/forum has already been helpful. Thanks again!

e.

[catstuart7]

#1176173

Hi Enid and welcome! Another factor to consider is that you want your Graves’ antibodies to be low as possible before conceiving – tests for this would be TSI and TRab. These do cross the placenta and can sometimes cause neonatal hyperthyroidism.

[Kimberly]

#1176174

Hello – I’m not really clear as to whether you were diagnosed with Graves’ or whether your hyperthyroidism was due to the nodule.

If you have been diagnosed with Graves’, as Catstuart7 said, the antibody issue is something to keep in mind. In fact, the latest guidance recommends testing antibodies in *all* pregnant women with a present or past history of Graves’ (regardless of treatment) at the 20-24 week mark, with the involvement of a maternal-fetal specialist recommended if antibodies are extremely elevated.

If you are interested in learning more about thyroid issues and pregnancy, this is a nice document from the American Thyroid Association. It was written for doctors, but there isn’t a ton of medical jargon, so it’s not too difficult to follow. Hope that this is helpful!

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/thy.2011.0087.pdf

[StacyA]

#1176175

Just lending support as I am breastfeeding and also paranoid about the liver effects of PTU and currently fighting with my endo over it, too… I have read ptu is highly recommended for the first trimester, at which point you can usually safely switch to methimazole.

[adenure]

#1176176

Hi Enid,

I understand your fears. I’m not a big pill person either. I took methimazole while hyper, but had to stop bc the methimazole messed with my liver enzymes pretty bad; fortunately it was caught with liver labs 7 weeks into it and all is well now. I had a thyroidectomy 6 months ago and am doing pretty well.

I have never been through pregnancy on ATD’s (I was diagnosed after my 4th baby was born). However, I do have a good friend who was diagnosed with Graves after her 1st baby was born and she continued to have 3 more children while taking either methimazole or PTU over the next 10 years off and on. All of her children are healthy and fine. I do believe that PTU is recommended for the 1st trimester and methimazole is seen as okay for the 2nd and 3rd trimesters, but obviously, do get your doctor’s approval before doing any of the above.

If it were me, I would try the PTU for at least 2 months to make sure all was well with the medicine and my liver before trying to conceive. Last thing you want is to find out PTU is causing you liver issues while you’re pregnant, have to stop it, and not have an option to keep your thyroid levels in check bc you can’t take methimazole, have RAI or surgery (because of being in the 1st trimester). If the PTU does cause liver issues, it’ll probably be in the first months that you are on it and having a liver panel lab work up will detect it easily enough. Once you’re safely taking PTU (if you decide to do that) for 2-3 months, then I would think you could look towards conceiving with confidence. Then, if your doctor allows it, and you choose to, you can go back on the methimazole for the last 2 trimesters. You can also breastfeed on either of the meds. as well.

If you’re really dead set against PTU, you could consider surgery or RAI. But, from what I understand, you are supposed to wait 6 months to ideally (my lactation consultant friend that I mentioned up above said) 1 year to conceive. If you opted for surgery, it would probably be recommended that you’re hormones are balanced out on Synthroid after surgery before conceiving (same with RAI). For me, it took 4 months to have my levels balanced out post surgery (1 dose change). Actually, it took 2 months for the numbers to be right on the paper, but it took 2 months on that dose for me to feel better.

If you’re looking to conceive sooner than later, it seems that giving PTU a shot is the answer. I really would give my body some time on it though to make sure your liver agrees with it and your hormones are stable on it before conceiving though.

[enid]

#1176177

Thanks everyone! This is helpful for sure. I was not diagnosed directly with Grave’s Disease, but things became a little vague after my initial refusal to keep going to the first endo. I’m setting up another appt with my current endo to ask for a clearer diagnosis, but my understanding is that it is/was the nodule.

In all my searching around, this website seemed well researched with the most useful links, and the forum has been particularly helpful and interesting. I am going to pick up my prescription for PTU tomorrow! eep! I feel my fears have been assuaged some about it now though. Thanks again, all!

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