What would you do? Thyroidectomy or radio active iodine?

[stepcutgirl]

Hello all. I have hyperthyroid that has been ill controlled over the past year with anti thyroid drugs. I recently got married and as a result now have insurance. Hooray! So, now it's time to take care of this hyperthyroid and the options both stink. My endocrinologist recommends the radio active iodine for the reasons of it's easiest, it's safe, and it's effective. I work in Radiology so I'm familiar with radio active radiation and frankly...it scares me. I'm 30 and I'd like to try to get pregnant next year and though most people can get pregnant after one year, I'm not sure I could. I don't ovulate on my own very often and as such it might take a couple years for me to ovulate the recommended amount of times before they consider getting pregnant "safe". Working in radiology I've talked to several radiologists about their opinion of it and their opinions range from "it's totally safe, no worries" to "I would never allow anyone on my family to do it, get the surgery".

My endocrinologist has agreed to do whatever I want. If I want surgery, he will do the surgery, if I want the radioactive radiation he's all for that. I know the decision is mine but I would like to know if any of you have had either done and what your thoughts were if you have.

Oh and the down side to surgery is that I'd be out of work a minimum of 1 week, possibly 2, a scar (I'm not concerned about that), possible problems with my voice after, possible nerve damage.

 

[Arkteia]

I'd discuss the danger of radioactive ablation for future pregnancy with a geneticist.

True, iodine isotope stays in the body for quite a while, how dangerous it is, is another question. I know many women who worked in biochemistry department with radioactive iodine and it always got accumulated by the tissues, according to the Geiger counter, but most of them went on and had pretty healthy babies. But the geneticist will know.

 

[LaurenThePartier]

I'd discuss the danger of radioactive ablation for future pregnancy with a geneticist.

True, iodine isotope stays in the body for quite a while, how dangerous it is, is another question. I know many women who worked in biochemistry department with radioactive iodine and it always got accumulated by the tissues, according to the Geiger counter, but most of them went on and had pretty healthy babies. But the geneticist will know.

Ditto this. Speak to multiple doctors who have the experience to give you an honest answer.

I was also diagnosed with hyperthyroidism when I was 19, spent 2 years on Tapazole, and then eventually was faced with the same choice as you at 21. I chose the radioactive iodine treatment, and these days (14 years later), I do ovulate (though it only matters on the left side since I had an ectopic on the right side last year). Were I faced with this decision now with attempts at TTC under my belt, I would absolutely err toward choosing the thyroidectomy. I would absolutely get multiple opinions on this. Good luck to you.

 

[perry]

I work in the nuclear field - and I think the I-131 would be rather safe - as long as you were not pregnant (or got pregnant) for the first 3 months or so. I-131 has a half life of about 8 days, and in 81 days there would only be 1/1024th of the original dose (0.000976). I can't imagine that this would pose any threat to the fetus. In another 40 days the dose would be 1/32768th of the original dose (0.0000305).

Given that most people get between 300 and 500 mrem per year from natural radiation and routine medical, and most people who fly get between 2 to 10 mrem per flight - I don't see the hazard (they don't tell pregnant mothers and infants that they can't fly due to the possible somatic radiation effects on the very young).

How much would the initial dose be? I suspect not that much.

Radiation workers can recieve up to 5 rem per year without expecting any noticeable long term health effects. For reasons I do not know - Pilots, air crew, and frequent flyers are not classified as radiation workers - even though they routinely get far more radiation exposure per year than any class of radiation worker in the US.

Perry

 

[jstarfireb]

I would choose radioactive iodine personally. The risk of surgical damage to the recurrent laryngeal nerves, which control the vocal cords, would be a big concern for me as a singer (and just as someone who likes to talk!). Because of that, I would want to avoid surgery if at all possible. YMMV, of course, but I have seen a few people with vocal cord paralysis after neck surgery, and it's something I wouldn't want to risk having.

 

[stepcutgirl]

Thank you for your responses. I am going to see my GYN , as a geneticist where I live would be a days drive, in two weeks to discuss with her, her thoughts on the radiation vs the surgery as it specifically applies to my ovarian condition. Hopefully she will be able to point me in the right direction.

Perry, the difference in radio active iodine vs regular old radiation as it applies here is that I've been told that 6 eggs deep will be nuked and that those eggs, should they be fertilized will have disasterous effects. Since most women ovulate monthly they are told to wait 6 months to one year to try to get pregnant. I don't ovulate monthly or even every other month. On a bad year I ovulate once, on a good year I might ovulate 3 times. When I told the endocrine doctor that he told me that I would need to wait until I ovulated six times to try to start concieving....even if that took 2-4 years. That's the part that scares me. I'm 30 and due to my ovulation issues the chances of me getting pregnant go down significantly each year. If I do the surgery, I could try at any point I wish to after surgery.

My fears of the radio active iodine don't stem from radiation on it's own, I work in radiology so as a general rule, radiation in and of itsself isn't something that scares me. It's the fear of not being able to get pregnant with a healthy baby that has me timid of saying yes to the RAI.

 

[MonkeyPie]

women ovulate monthly they are told to wait 6 months to one year to try to get pregnant. I don't ovulate monthly or even every other month. On a bad year I ovulate once, on a good year I might ovulate 3 times.

Have you thought about being put on a drug afterward to help you ovulate more regularly? Is that an option?

 

[Miss Sparkly]

I would do what is safest for YOU. If you don't ovulate regularly now, who's to say that you could even get pregnant on this schedule after surgery? Surgery also sounds like it could gave potential complications that would hinder you being a mother, a wife and in the workforce. Finally, if you can't get pregnant you can always adopt a child. Right now you have a husband, a job, and most importantly yourself to think about - not a child which doesn't even exist at this point.

 

[stepcutgirl]

MP-I think that's defintly a viable option at this point, and part of the reason I want to see my GYN before making a decision. I think it would even be possible she could put me on meds to make me ovulate directly after the RAI to force my body to ovulate the reccomended times needed. I'm not certain she would or that it would be safe since I would actually be trying not to get pregnant during that time but I think it's certainly worth talking to her about.

SB-I'm going to have to respectfully disagree with you on this. Surgery is pretty safe with a less than 5% chance of anything going wrong. Of the things that could go wrong, there is nothing even remotely related to impacting my ability to concieve afterwards from surgery. It's also well within the relm of possibility that due to my condition, even with fertility meds, I may not be able to have my own child. I'm ok with that, it's not new news to me and I'd be perfectly happy should I not have my own to adopt. However, that doesn't mean I don't want to at least try to have my own child and to do what I need to do to give that the best possible go I can.

 

[diva rose]

Is there a possiblity to have children before treatment?

Stepcut - with thyroidectomy there are long term side effects. Best to consult your specialist about it but the common side effects are:
- hypothyroidism
- depression
- weight gain
- constipation
- intolerance to cold

The biggest concern would be hypothyroidism and the chances of you getting this is high after surgery.
There is a strong link between women with hypothyroidism during pregnany and risk of birth defects in babies. Hypothyroidism is also linked with infertility.

If you are getting second opions, I'd recommend you consult another endocrinologist who has extensive experience.

I wish you all the best and hope things turn out well for you.

 

[stepcutgirl]

DR-Thank you! There is no chance of having a child before as my hyperthyroid is not well controlled and that poses serious risks to a baby. Wheather I do the radio active iodine or the thyroidectomy the result will be hypothyroid. This doctor I'm seeing was my second opinion and I much prefered him to the first, though they both had the same opinion. They told me that if they only took out part of my thyroid to keep me from becoming hypothyroid itr would be less than a year before I would again become hyperthyroid and need treatment once again. They both say that completely removing the thyroid via whichever method will make me become hypothyroid and I will immediately begin Synthroid, a hormone replacement drug which has no ill effects for me or any child I might become pregnant with. The side effects you mentioned are all true, but I'm told controlled with the Synthroid and those will occur with either treatment.

 

[Munchkin]

Speaking as a pregnant, 31 year old pediatrician whose Mum went the iodine route for Graves, I would go for the iodine. This is also coming from a person who had ovulation issues since adolescence, so I can sympathize with your fears.

That being said, I would connect with a fertility specialist long prior to iodine. I would specifically investigate harvesting eggs prior to iodine so a store of healthy eggs are available for implantation, if necessary. With the mental reassurance that I had a small stockpile to turn to, I would also look into post iodine treatments to stimulate ovulation to enable the requisite number of cycles to occur in the shortest, yet safest span possible. A traditional OB/GYN may not be able to provide you with adequate guidance. Please don't be afraid to ask for a referral to a true high risk/infertility specialist!

 

[stepcutgirl]

Munchkin-Thank you for this post. I'm not sure I have resources (funds) available to me for egg harvesting, but it's something I will absolutely bring up and talk about, as well as the infertility specialist. I feel like this decision shouldn't be that big a deal or so hard to choose between, but for me it is proving to be. Hopefully my appointments this coming month will clear the issue up for me.

 

[merilenda]

I also have hyperthyroidism, which has not been well-controlled for years (also due to a lack of insurance). I now have decent health insurance through my work, so I'll probably be facing this decision at some point as well. So I'm very interested to read the replies here. You'll have to let me know what you find out.

What medication have you used? I've always been put on methimazole, which I hate. It always ends up making me feel worse (I don't have many symptoms when I'm unmedicated) and despite the fact that the pill is tiny, it sticks to my tongue and I have difficulty swallowing it. I wanted to talk to my doctor to see if there were any other options in this regard.

 

[LGK]

I've had my thyroid out, as I had thyroid cancer in my early 20s.

The surgery is not terrible. I recovered pretty quick, faster than with my impacted wisdom teeth taken out actually. You want a *very* experienced thyroid surgeon however. The nerves to your larynx go through the thyroid and if they're severed, you're breathing through a hole in your throat forever. Most people's are in a predictable location but not everyone's, and it is a statistically significant risk from what I remember- something like 10% chance, I could be off on the number though- it's been awhile!

You also can lose your parathyroid glands if they're not careful- I have two missing now out of four (not an ooops, actually- mine were abnormal/cancerous). They process calcium.

The thyroid is very spongy and hard to remove, frankly. It's fairly likely you'll end up taking synthroid or other thyroid replacement drugs after surgery, for the rest of your life, since they can't calculate it accurately- how much thyroid to remove, to fix hyperthroidism.

How good your surgeon is also has a lot to do with how noticeable your scar is later, too. Mine is virtually invisble, it was cut into a natural line in my neck and most people can't tell it's a scar. I've seen extremely hardcore noticeable ones though. Mine looked like I'd slit my throat for a few years, but once the redness went away it was really tough to spot. They tell you to stay out of the sun for a year at least, they're not kidding- tanning a fresh scar will make it more noticeable later.

You may well lose feeling in parts of your neck skin- I have a couple decent size patches that have no feeling at all, which makes wearing chokers easy

Recovery time was... two weeks ish? Your voice will be hoarse for that time (the vocal chord nerves again) and you can't turn your head to drive for at least that long, but the pain wasn't too bad after the first few days especially IIRC- I mean, yes, unpleasant but not unbearable. They arent' kidding to take pain meds before the drugs from the hospital wear off- if you stay on top of it, it isn't too bad.

Can't speak to teh radioactive iodine, but I figured I'd tell you my experience with the thyroidectomy surgery if it helps you at all.

 

[stepcutgirl]

Mer-I started out on PTU, it's a twice daily med and I switched to Methimazole because I kept forgetting the second dose of PTU. I don't really notice too much with them, except the eye symptoms they do seem to help with. I have very bad symptoms of hyperthyroid when I don't take the meds. I found out I had it because I was having cardiac problems. I went to a cardiologist who told me I had Inappropriate Sinus Tachycardia after some tests and had me scheduled for an ablation and a pacemaker to be put in. He had not looked through my blood work carefully as his nurse told him it was all normal. Thank goodness he did look through it after I left! I had nearly off the charts hyperthyroid. My resting heart rate was 160. I was a mess.

The meds have brought my T3 and T4 down to normal but my TSH continues to stay very very low.

I have an appt with several doctors this month. One is my GYN, another my ENT (seeing him for allergies anyhow and he does handle pts with thyroid issues and does thyroid surgery so I'll get his opinion, and then my endocrinologist. I'll let you know what they all say...though I know my endocrine docs opinion is to do the RAI.

 

[stepcutgirl]

LGK-Thank you for your experience. Your story is some of what I was hoping to hear. I will have to take synthroid for the rest of my life with either choice as they both will completely remove the thyroid so that part doesn't really factor in, but I appreciate you bringing it to my attention in case I didn't know. I'm very sorry to hear about your thyroid cancer. I hope that is all in your past now. I'm struggling to decide which to do. Which one I think I want seems to change hourly. Hopefully consulting with these doctors this coming month will help me to decide and stay firm on my choice.

 

[jstarfireb]

Speaking as a pregnant, 31 year old pediatrician whose Mum went the iodine route for Graves, I would go for the iodine. This is also coming from a person who had ovulation issues since adolescence, so I can sympathize with your fears.

That being said, I would connect with a fertility specialist long prior to iodine. I would specifically investigate harvesting eggs prior to iodine so a store of healthy eggs are available for implantation, if necessary. With the mental reassurance that I had a small stockpile to turn to, I would also look into post iodine treatments to stimulate ovulation to enable the requisite number of cycles to occur in the shortest, yet safest span possible. A traditional OB/GYN may not be able to provide you with adequate guidance. Please don't be afraid to ask for a referral to a true high risk/infertility specialist!

I agree with Munchkin, and would also like to let you know that thyroidectomy for Graves' disease is associated with particularly high rates of recurrent laryngeal nerve damage as thyroid surgery goes. (Full disclosure: I'm a resident in anesthesiology as well as a singer, so these issues are particularly important to me.) It's more often temporary than permanent, but the risk of permanent damage is real and something I would want to avoid. However, I'm also someone who doesn't want to have children, so RAI would be the very easy decision for me. I can see why this is quite a bit harder for you. Good luck with your decision!

 

[stepcutgirl]

Speaking as a pregnant, 31 year old pediatrician whose Mum went the iodine route for Graves, I would go for the iodine. This is also coming from a person who had ovulation issues since adolescence, so I can sympathize with your fears.

That being said, I would connect with a fertility specialist long prior to iodine. I would specifically investigate harvesting eggs prior to iodine so a store of healthy eggs are available for implantation, if necessary. With the mental reassurance that I had a small stockpile to turn to, I would also look into post iodine treatments to stimulate ovulation to enable the requisite number of cycles to occur in the shortest, yet safest span possible. A traditional OB/GYN may not be able to provide you with adequate guidance. Please don't be afraid to ask for a referral to a true high risk/infertility specialist!

I agree with Munchkin, and would also like to let you know that thyroidectomy for Graves' disease is associated with particularly high rates of recurrent laryngeal nerve damage as thyroid surgery goes. (Full disclosure: I'm a resident in anesthesiology as well as a singer, so these issues are particularly important to me.) It's more often temporary than permanent, but the risk of permanent damage is real and something I would want to avoid. However, I'm also someone who doesn't want to have children, so RAI would be the very easy decision for me. I can see why this is quite a bit harder for you. Good luck with your decision!

Thanks for the info Jstar. Why is it more common with Graves than with regular hyperthyroid?

 

[manderz]

My mom has thyroid issues, and she's done a lot of research and found sparkpeople.com to be very useful. There's specific subforums that deal with many conditions. My only advice is look into a natural hormone replacement, rather than synthetic.

 

[jstarfireb]

Thanks for the info Jstar. Why is it more common with Graves than with regular hyperthyroid?

I'm not 100% sure, but I believe it's because some disease processes cause the thyroid to grow around the laryngeal nerves and make the nerves harder to identify during surgery. Graves' is one of these. Thyroid cancer is another disease with a higher rate of nerve injury during thyroidectomy.

 

[stepcutgirl]

Thanks for the info Jstar. Why is it more common with Graves than with regular hyperthyroid?

I'm not 100% sure, but I believe it's because some disease processes cause the thyroid to grow around the laryngeal nerves and make the nerves harder to identify during surgery. Graves' is one of these. Thyroid cancer is another disease with a higher rate of nerve injury during thyroidectomy.

This is very good info. Thank you. I found out today that even though I got on to my husbands group coverage they do not cover pre existing conditions for one year. Because I work in radiology I can order the RAI through our nuclear department and get it fairly inexpensively, which may be what I need to do. I still need to go see my GYN to make sure this will work with my fertility issues, but if it will I think I'd like to get it taken care of instead of waiting...I think.

 

[marymm]

Since either way you'll be taking some form of thyroid replacement medication, I thought the following might be helpful.

As you probably know, the current normal thyroid level of TSH in the US is 0.3 to 3.3 (used to be 0.5 to 5.5 and I think some labs and the UK still adhere to that scale).

I am hypothyroid and have taking levothyroxine for the last 12 years. It took 2-3 years to find the right dosage for me and for me personally Synthroid was not the best formulation. The 1st year you are on thyroid replacement medicine you'll get blood drawn every 3 months until your TSH results are within the normal range AND you are responding positively to the treatment. If you are testing within the normal range but still having symptoms (usually symptoms of hypothyroidism or hyperthyroidism, depending on if your TSH is still too low or too high), your dosage will be tweaked and you'll be tested in another 3 months. Once everything is testing out satisfactorily generally you go to 6-month TSH tests and then annually. Whenever you have physical changes (big weight gain, big weight loss, or occurrence of symptoms relating to hypo or hyper thyroidism), you'll want to check in your doctor and get another TSH test.

So even after your hyperthyroid treatment (whether radiation or surgery), it will probably at least one year (and could be more) before your body is stabilized on the thyroid replacement medication. As hyperthyroidism symptoms can include very light to non-existent menstrual cycles, and hypothryoidism symptoms can include very heavy menstrual cycles, probably you would want to wait until you are stable on your thyroid medication before trying for pregnancy. Of course your doctors will know best - I just wanted to point out that going on thyroid replacement therapy isn't necessarily straightforward in that each person responds differently and it can take time and different dosages and formulas before you find what works best for you.

 

[merilenda]

So even after your hyperthyroid treatment (whether radiation or surgery), it will probably at least one year (and could be more) before your body is stabilized on the thyroid replacement medication. As hyperthyroidism symptoms can include very light to non-existent menstrual cycles, and hypothryoidism symptoms can include very heavy menstrual cycles, probably you would want to wait until you are stable on your thyroid medication before trying for pregnancy. Of course your doctors will know best - I just wanted to point out that going on thyroid replacement therapy isn't necessarily straightforward in that each person responds differently and it can take time and different dosages and formulas before you find what works best for you.

Reading this comment jogged my memory a little. I have not done enough research on this yet to add much, but I wanted to throw this out there. I used to work with a woman who previously had Graves' and had radio active iodine. She told me that her doctor advised her to wait a certain amount of time (I believe it was at least one year) before she should TTC due to the risks involved. This kind of goes right along with what marymm said. My memory could be a little faulty here, but I want to say she said she got pregnant about 3 years after having the radio active iodine. She did end up having two healthy children.

 

[stepcutgirl]

Since either way you'll be taking some form of thyroid replacement medication, I thought the following might be helpful.

As you probably know, the current normal thyroid level of TSH in the US is 0.3 to 3.3 (used to be 0.5 to 5.5 and I think some labs and the UK still adhere to that scale).

I am hypothyroid and have taking levothyroxine for the last 12 years. It took 2-3 years to find the right dosage for me and for me personally Synthroid was not the best formulation. The 1st year you are on thyroid replacement medicine you'll get blood drawn every 3 months until your TSH results are within the normal range AND you are responding positively to the treatment. If you are testing within the normal range but still having symptoms (usually symptoms of hypothyroidism or hyperthyroidism, depending on if your TSH is still too low or too high), your dosage will be tweaked and you'll be tested in another 3 months. Once everything is testing out satisfactorily generally you go to 6-month TSH tests and then annually. Whenever you have physical changes (big weight gain, big weight loss, or occurrence of symptoms relating to hypo or hyper thyroidism), you'll want to check in your doctor and get another TSH test.

So even after your hyperthyroid treatment (whether radiation or surgery), it will probably at least one year (and could be more) before your body is stabilized on the thyroid replacement medication. As hyperthyroidism symptoms can include very light to non-existent menstrual cycles, and hypothryoidism symptoms can include very heavy menstrual cycles, probably you would want to wait until you are stable on your thyroid medication before trying for pregnancy. Of course your doctors will know best - I just wanted to point out that going on thyroid replacement therapy isn't necessarily straightforward in that each person responds differently and it can take time and different dosages and formulas before you find what works best for you.

This was very good for me to read. I really had not put much thought into the thyroid replacements meds. I knew there was a period of adjustment but did not realize it could take so long. Thank you for bringing this to my attention.

Thank you also Mer for letting me know about your co worker.

 

[rosetta]

I would not go for thyroidectomy myself due to the risk of recurrent laryngeal nerve injury.

This may be biased though as I am training to be a radiation oncologist and generally quite comfortable with the magic rays