[Shaunak]

#1060259

I’m at a loss right now. I don’t know what to do. I was diagnosed with Grave’s in February 2012 while ttc. I went into remission shortly after with no medical intervention and got pregnant in July 2012 through ivf. (I am 38, husband is 40). I had very little thyroid monitoring throughout my pregnancy (tsh levels were normal) and had a healthy baby April 2013.
I had given my Grave’s very little thought because I had no symptoms other than an occasional heart palpitation or hand tremor. Most of my symptoms are the opposite of Grave’s. I’ve got no energy, I am struggling to lose the last 15 lbs of baby weight, my resting pulse is low normal.
I went to a new endo who didn’t believe I have Grave’s because of my symptoms so she ran all new blood work and confirmed it is Grave’s. The antibodies are there. My tsh was .01 in September so she put me on ptu for 6 weeks because we want to start trying for our second (and final) baby. Well bloods came back and tsh was only .03 and liver enzymes are elevated. She is telling me surgery is my only option to ttc now. I can’t imagine removing my thyroid and struggling with hypo for the rest of my life when I barely have symptoms now! All I have to do is make it through the first trimester and methimazole is safer to take.
Has anyone heard of other options? We are doing ivf so there is no accidental pregnancy possible. I want to take methimazole up until implantation then it’s only 3 short months until I can take it again. I’m willing to try anything but surgery. Diet, exercise, acupuncture. I just don’t want a TT. I welcome any advice because I feel really pressured to make a decision ASAP and I want to make one I can live with.

[Kimberly]

#1181595

Hello – This is certainly a difficult choice to make. Hopefully, others here will chime in who have been in the situation of having to make a treatment choice while trying to conceive.

Elevated liver enzymes can be a side effect of the meds, but they can also be associated with hyperthyroidism itself – which is why doctors generally run a baseline test prior to prescribing Anti-Thyroid Drugs (ATDs). Usually, the thought process is that if the levels haven’t gotten *worse* over time, the effect is due to the hyperthyroidism, and not the ATDs. The latest medical guidance from the American Association of Clinical Endocrinologists and the American Thyroid Association recommends *not* starting a patient on ATDs at all if liver enzymes are extremely elevated.

The other options in addition to ATDs are RAI and thyroidectomy. The “treatment options” thread in the announcements section of the forum includes a couple of nice links that go through the pros and cons of each option. Regardless of which one you choose, it will be important to make sure your levels are both normal and stable before trying to conceive, as this is safest for both you and the baby. You might also be interested in the following guidance from the American Thyroid Association that covers thyroid issues and pregnancy:

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

The section on Graves’ starts on page 1094 of the original journal article (page 14 if you download as a PDF).

Wishing you all the best!

[Shaunak]

#1181596

In August my liver enzymes were the low end of normal around 15 and 16 (before atd’s). My 6 week bloodtest (post starting atd) showed 1 enzyme elevated (33 and 75). They retested again last week just to make sure it wasn’t a fluke and both enzymes were elevated (44 and 88).

I have an appointment with the fertility specialist on Monday to get their opinion and I am going to see another endo for a second opinion before I make any decisions.

And thank you for the info. It was very helpful to be able to read through the guidelines during pregnancy. I hope more people give insight. It is helpful to hear others experiences.

[adenure]

#1181597

Hi!

How high are your enzymes? Do you know what they were before the PTU? I had elevated liver enzymes (8 times the normal range) on methimazole, so I too had to stop taking my ATD’s. I opted for surgery. I got Graves after my 4th son was born. I was breastfeeding (and still am) and didn’t want to have to wean so I didn’t want RAI. I also didn’t want RAI for other reasons too. Do you do well on methimazole? I’m sorry you’re having a hard time on PTU- stinks, but your liver is important and you can’t live without it. So, I wouldn’t risk staying on the PTU any longer, especially if your enzymes are really high.

RAI is out of the question as you would have to wait 6 months to preferably a year to conceive – from what LLL people and doctors have told me. Spending the time, the money for IVF, energy, and the emotional investment only to have a problem with the pregnancy due to hyperthyroid levels isn’t what you want. If you want to conceive now, and you’re hyperthyroid, it could be the surgery is the fastest and safest way in order to conceive sooner than later.

I know the thought of surgery is scary, but with a good surgeon who is experienced with thyroidectomies, it can go well and you won’t have to worry about hyperthyroidism again! It will also allow you to conceive faster than RAI and not have to worry about the effects of ATD’s. I was euthyroid (normal levels) about 2 months post surgery with 1 dose change in Synthroid- so it can go fairly quickly. I hope all goes for the best for you.

[npatterson]

#1181598

Hello,

It sounds like one thing you need is a second opinion. There are gynecologic endocrinologists. It sounds like you are headed in that direction.

There have been many babies born to Graves’ mothers. You are one of them. You have gotten some good support and advice. I just wanted to say hello and wish you the best.

I have a question: What is “ttc”? I figured out ivf, but also don’t know what LLL stands for! Abbreviations always get me cross-eyed.

Take care,

Nancy

[barbra]

#1181599

I’m going to take a blind shot here:
ttc = trying to conceive.

I have no clue on the LLL.

Anybody?

Barbra.

[adenure]

#1181600

LLL- La Leche League- it’s a world wide organization that supports new mothers and breastfeeding. They are usually Lactation Consultants with a huge amount of knowledge when it comes to pregnancy and breastfeeding- including medical information. Dr. Thomas Hale is the best “go to” when it comes to wanting to know what is considered safe (medicines) in pregnancy and breastfeeding. http://www.llli.org/ http://www.infantrisk.com/

[Jake_George]

#1181601

This is actually a fairly common question back in the day when we started this board.

Some doctors want to do RAI or surgery right away and not give antithyroid drugs a chance to work.

With you trying to get pregnant it is hard when levels are out of whack or changing. At your age they may have recommended the surgery to give you the best chance to conceive once on replacement hormone (about six months post surgery).

The other thing to consider with a confirmed diagnosis of Graves’ disease is the thyroid is not healthy. It will not get better with time. It can stay the same or get worse, it will not get better.

There was a BIG argument and probably still is about RAI or thyroidectomy to treat Graves’. Many sites would harass you saying you were removing a working thyroid and caused many a great deal of stress.

Truth is, your thyroid is not healthy. It can stay the same or get worse. If it stays the same you can try medication to slow it down or speed it up to a normal thyroid level and make pregnancy more likely.

If you wait, you may get pregnant but it may be harder with fluctuation levels.

If you have surgery to remove the thyroid you do hypothyroid in less then a week. You go on replacement hormone to get your levels normal. That is where the six months comes in I was talking about. Any change to thyroid levels takes 21 days to get into the blood stream and read as new true thyroid levels.

It is a lot to think on. But, we are here for you. Hope to hear you are looking for a new bundle of joy soon. But in long term, think about a treatment option.

[snelsen]

#1181602

Few things to think about.

1. TT really is the “fastest way” to move forward with a plan to conceive. It is most likely a mistake for Jake to say that you’d be hypo a week after the surgery, so I disagree with that,and a good surgeon or endocrinologist can give you some statistics on that. After TT, you do labs, see you you feel, begin thyroid replacement, and see how it goes. But as Alexis said, RAI takes a much, much longer time before you can even begin to think about conceiving.The difference between TT and RAI when planning to be pregnant, is that it takes a much, much longer time with RAI to get to where your thyroid is stable..so you CAN begin treatment with ATD’s, and move on with your life and conceiving.
BUT you have ruled out TT, so that is that. It is your choice, and you do have them. But diet, exercise and acupuncture, or anything else you have thought of, does not replace the three options for treatment of Graves’/

2. So, your plan to see the fertility doc tomorrow, and the endocrinologist a few days after that, is a very good plan.

Each of the posts you have received, including mine, are no substitute for the consultations you will have with your docs. IT is a good idea to explore this carefully, ending up meeting your goal of having a decision you can live with, and that you made for yourself with the help of knowledge. I realize a lot of the pressure here, is your own, cause you want to move ahead with IVF,and get that 2nd baby! Very easy to understand, and I wish you the best. Do write again.
Shirley

[Shaunak]

#1181603

Thank you everyone for the kind words and information. I have done a lot of reading over the weekend and I have many questions for the specialists. The internet can be an informative and scary thing so I am trying not to read into anything until I speak to my doctors.
I will give an update after I see the fertility dr tomorrow.

[snelsen]

#1181604

See you docs, as you plan to to do!

You are MUCH better off not reading stuff on the internet, unless, as Kimberly suggested,the site she recommended, and/or an academic institution. I would stay off it before and after you see the doc tomorrow. Ask HIM/HER for references, or follow the suggestions listed here.

There is much on the internet, that is AIMED at worried and vulnerable people seeking information.
Shirley

[Kimberly]

#1181605

Just a quick note that it’s the immune system that’s faulty with Graves’ – not the thyroid. The exception where there *is* thyroid damage is with someone who is dealing with both Graves’ and Hashimoto’s thyroiditis. The HT is a destructive process that actually does damage thyroid tissue.

And it *is* possible for the immune situation to right itself, as some patients will experience a period of remission from Graves’. We have a former facilitator here (James) who is in a 10+ year period of remission. The stats on who will have a remission vary — but the factors that make remission *less* likely are extremely high T3 and antibody levels, large goiter, male gender, and smoking.

[Jake_George]

#1181606

Actually if you have a total thyroidectomy you make no hormone at all and as soon as what you have in your system is gone you are hypo. This is not the case with a partial where some is left and you are then correct. Hypo may or may not happen. Depends on how much is left and how well it works.

But a total removal will make you hypo very fast. There is no hormone being released at all. So hypo is fairly rapid.

If I remember right one or more of our bulletins address the need to have blood work shortly after TT so the patient does not go really hypo.

1. TT really is the “fastest way” to move forward with a plan to conceive. It is most likely a mistake for Jake to say that you’d be hypo a week after the surgery, so I disagree with that,and a good surgeon or endocrinologist can give you some statistics on that.

[Shaunak]

#1181607

Just an update on what is going on. I saw the fertility Dr. last week. He stated because I was sub-clinical hyperthyroid he would have no problem proceeding with the IVF as long as I was closely monitored. His feeling is that the studies that showed a higher miscarriage rate were done when the thyroid was “out of control” and there are many studies that show that the rate of miscarriage is not higher in a sub-clinical state. If I ended up having a miscarriage he would blame my older eggs more than my thyroid. He wanted to run some blood work before we decided to go any further and my TSH came back at .363! (it was .03 before). So all my T3/FT4/TSH levels are within normal limits. This is exactly what happened right before my first pregnancy and I was able to carry her without medication.
I called the endocrinologist and asked about the new TSH level and she said it could be because a different lab that did the test (which I don’t buy, it is too much of a difference) or the PTU could have pushed my body into remission. She agreed to go ahead with the IVF and closely monitor until the 2nd trimester when I can start the methimazole if it is necessary.
We will run a full thyroid panel right before implantation to get a baseline and then monitor bloods as often as necessary. I understand there are risks involved and if this takes several tries it could get worse. But for now, things are as good as they are going to get so we are proceeding with the IVF. Implantation should happen in early December. I appreciate any kind words or support. This was not a decision made lightly.

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