[alsha]

#1058896

Hi I just had a couple questions that I’ve been wondering about lately:

1) I have been told that as a Graves Disease patient, it is best to stay away from iodinized foods, seafood, artificial sweetners, cigarettes (although I don’t smoke), and more. Would this diet be a life-long adjustment since Graves/my thyroid is something I must deal with for the rest of my life? Or are we allowed to eat as normal people do after our thyroid is stabilized? (Because I’ve heard that even if your thyroid is stabilized, it is still a good idea to stay away from the iodine, seafood, etc)

2) For eye disease patients who eventually opt to kill off their thyroid (either through surgery or radiation), is it suggested to take care of the thyroid before going into orbital decompression surgery? Or does it not really matter?
My thyroid is currently still functioning (I’m just on methimazole) and I’m also planning on having an OD. I’m just concerned that if I ave an OD soon, but I later want to get rid of the thyroid, that radiation might be a bad idea since I’ve heard that it can worsen the eyes. OR, if I decide to eventually decrease my medicine dosage, I’m afraid that my thyroid and possibly my eyes could become active again.
I know that the thyroid and the eyes aren’t exactly a direct correlation, but there’s a possibility that one might still trigger the other right?

3) For people who had an OD, did you opt to have both eyes done at the same time or separately? I just wanted to hear some feedback about why you chose to do what you did.

4) Is the fat that sits above and below the eyelids a result of the muscles pushing existing fat forward to create a swollen look? Or is it an increase in the amount of fat around the eyes and the accumulation creates bags?
I was wondering whether an orbital decompression would be able to fix this if it made more room so the fat could sit back and not be so apparent. Or must this be taken care of with a separate cosmetic surgery? (I’m a bit wary about cosmetic surgery because I’ve heard that it’s not covered by insurance.)
Or is it different for every case? Or maybe it depends on severity?

Any insight would be appreciated! Thanks

[Bobbi]

#1170746

To take your questions out of order:

There are fat pads, top and bottom, at the front of the eye. As the eye muscles swell, the fat pads are pushed forward. OD usually alleviates at least some of that issue. But it varies from patient to patient. Also, depending upon your age, your skin may not “bounce back” to the original condition, and sags will remain. That is my case — I didn’t have to have surgery, but after my eye disease remitted, those fat pad pouches were left saggy and baggy.

You have a thyroid, therefore, you need to ingest foods containing iodine. (The only way for the thyroid to produce thyroid hormone, is to have iodine.) So the folks telling you to avoid all such products are wrong. When I asked my endo about this issue, she told me that the only “foods” to avoid were things like kelp supplements — i.e. something containing HUGE amounts of iodine. (I also stayed away from kelp.) Throwing lots of iodine on the hyperthyroid fire can cause UNpredictable results. So, it’s best to limit extreme iodine consumption. People will also tell you to avoid certain veggies that have a chemical in them that is known to produce goiter if ingested in large enough quantities. But these veggies are good for us. And you would need to ingest physically impossible amounts in order to affect your thyroid function. So don’t worry about them, either.

When you are going in for something like an uptake and scan, or RAI treatment, you will be told to severely limit your consumption of foods containing iodine (like shellfish and seafood). But that is only so that your thyroid cells will be temporarily depleted of iodine, so they will hungrily soak up the treatment RAI or test RAI. It is a temporary necessity, not a long-term one.

Hyperthyroidism — uncontrolled — is a contraindication for any type of surgery. Other than that, I don’t know that it matters by what means you have controlled your hyperthyroid condition. You would need to ask your doctor directly.

In general, treating your thyroid problems has little or no impact on your eye disease. One study has shown that there may be a temporary worsening of the eye disease in about 16% of the patients who undergo RAI. That study also showed that a concurrent treatment with prednisone, eliminated the temporary worsening. So prescribing a course of prednisone in someone who already has existing TED is common. There have been subsequent –as yet not definitive — studies as well trying to establish other links. What we don’t know about this issue is still huge. But, in general, you can expect the course of your eye disease to be separate from your thyroid issues and treatments. Keep in mind, some folks get the eye disease long before their thyroids go wonky. Some folks, like Shirley (who posts to this board) got the eye disease long, long after their treatment. Some folks get the eye disease who have only ever been hyPOthyroid. They are separate diseases, linked only by their connection to thyroid abnormality.

Our health insurance companies typically will not pay for any surgery deemed “cosmetic.” That includes OD — in some cases — depending upon the insurance company. It’s wise to check things out with yours.

[snelsen]

#1170747

Good morning!
1. Bobbi covered #1 about the iodine. What you heard, is misinformation, except for the situation she so nicely described.

2. Just some general comments, addressing your questions and comments as they appear in #2.
I think you know about the two phases of TED, the active or hot phase and the inactive, or cold phase. The most important thing about timing your surgical procedures on your eyes, is to have your symptoms (not changing all the time, but in a steady state) and your doctor’s concurrence that you are ready for corrective surgery on your eyes.
As I recall, and based on what you wrote in this post, (when I am replying, I can’t return to your beginning posts to check anything out. I can see only your recent post and Bobbi’s response, ) you want to get OD’s done before you begin school in the fall. There is quite a bit to check out with the docs on this one, but I feel confident in saying that any MMI dose is totally unrelated to your eye disease TED. So your comment that one does not trigger the other, is correct. Both Bobbi and Kimberly have written, and I would imagine your docs would say the same thing, that there is a ton of information we don’t know about the treatment of TED, and everyone hopes that there will be better choices in the future, but yes, there is enough information to know that TED symptoms can be worse after RAI. Your question about having your corrective eye surgery first, and then deciding to have RAI, is a good one, and I imagine you might not get a definitive answer from anyone. My personal thought, because of my severe TED, is that I would not take that chance. There is not good enough information for me to take that risk. I’d be concerned that even with small changes in TED, after my surgical procedures, that there could be changes I did not want. Be aware that I am speaking from no knowledge at all in this area, it is juset what I would feel. But, it has been stated before, that good management with prednisone, can make a positive difference with increased TED symptoms after RAI.

3. I have not heard of anyone who has had both eyes done for OD at the same time, but I bet that has been done. Since you have lots of help, I would ask the surgeon. I realize it would save a lot of time for you regarding recovery.
Both eyes would be covered for several days post op, so you would not be able to see at all.

4. Your question about orbital fat is a good one to ask the surgeon. If the orbital fat is in the orbit, when it is removed, your eyes will not be as bulgy.
Removing the orbital fat in the orbit is a much less complex procedure than
working on the orbit itself. My gut feeling is that the fat on your eyelids is a separate eyelid procedure. Definitely a surgeon question.
Regarding insurance, if your docs code it correctly in whatever language the coding is for medical procedure relating to TED, my experience is that all my procedures were covered completely.
Shirley

[jansm]

#1170748

I have read comments elsewhere, not on this forum, from patients who did undergo OD on both eyes at the same time. I do not know their reasons, but most admitted it was extremely difficult. They all needed assistance in normal everyday activities, since they could not see clearly out of either eye. I recall at least one of them concluded they probably lost as much time recovering from one large single surgery, as they would have if it had been broken up into two separate surgeries.
My OD surgeries were about 2 weeks apart. While I did have help at home from a husband and college age son, I was still able to see well enough with the non-surgical eye to walk through my home and pretty much take care of myself. It also allowed me to watch a little television, read the newspaper, do some needlework and other things to pass the time, and not feel completely useless or out of touch with the world. I owned my own business at the time of my surgeries. In between the two, there was time to catch up, as well as prepare for a little more time away. I believe it made things much easier for me and everyone around me.

[Kimberly]

#1170749

Hello – Just to add on to the comments you’ve already received, smoking is a *major* risk factor for worsening of the eye disease. Even second-hand smoke can have a negative impact, so it’s important to steer clear of second-hand smoke as well. Take care!

[alsha]

#1170750

Thank you everyone for the helpful posts!

I was also wondering whether most patients eventually take care of their thyroid (through surgery or radiation), or if a significant amount of people just keep on adjusting methimazole and see if they go into remission.
I know there isn’t exact data on this, but it seems to me that people usually end up killing their thyroid sooner or later, and that methimazole is just a temporary fix?

[snelsen]

#1170751

Hi, I thing the use of ADT’s as the third treatment option has evolved over the years as more information was gathered. The reason to use it in the first place, as I am sure you know, is to get up out of the potentially dangerous and life threatening, and certainly to decrease the amount of hormone that is courtesy of Graves’, so we can begin to feel sane again, minus tremors, feeling like we are losing our minds, and all the other miserable symptoms that go with untreated Graves’.
Over time, ATD’s began to be regarded as a third treatment option. Kimberly has been on ATD’s for a long time. Not sure about Ski. Bobbi had RAI.
Kimberly is the best person to tell you her own experience, but I can see a couple cons to be:
-if we become hyper again on ATD’s, there might be a need to re-visit the other two options of a thyroidectomy or RAI.
-the very very small incidence of liver involvement on ATD’s. but it is rather small as time passes. When we first begin them, I am sure the endocrinologists order liver function tests (lovingly know as LFT’s, in the “trade.)

Like all of the three treatment choices, the reasons for these choices are all over the map, some of them very personal, but that is ok as long as we have options. There are quite a few posts on this, but you’d have to fiddle around with the words on the search engine.
Brief examples are, “I don’t want surgery if I have any other choices,” “I am afraid of RAI (or surgery) or “I don’t want to take the chance of starting this all over again if the ATD’s don’t work over time.” The last one illustrating your comment about a temporary fix.

You got some really nice responses about one eye or two eyes for OD. Sometimes the surgeon has a preference, too.
Shirley

[Kimberly]

#1170752

alsha wrote:

I know there isn’t exact data on this, but it seems to me that people usually end up killing their thyroid sooner or later, and that methimazole is just a temporary fix?

Hello – I’ve seen varying statistics on remission with Anti-Thyroid Drugs, and they run on the low end from 20-30% to other sources that say 50%. So the possibility of remission is one factor that people pursue ATDs.

Also, none of the three options are risk-free, so all we can do as patients is do our own research and make the decision we are most comfortable with. I have been on ATDs for almost 4.5 years. We have another facilitator, James, who has been in remission for several years after (I believe) three rounds of ATDs. Ski and Bobbi were both treated with RAI and are happy with that option. Other members here (including Shirley) were treated with surgery and felt that was the best decision for them.

This is a nice article from an endocrinologist that talks about the importance of taking patient preference into account when selecting a treatment option:

[size 10](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. As an alternative, you can right-click the link and open it in a new tab or new window).[/size]

http://www.endocrinetoday.com/comments.aspx?rid=90930

Take care!

[Bobbi]

#1170753

Weighing in: there can be good medical reasons why one patient might need to choose one form of treatment over another. The doctor will provide those reasons, if they exist, and, personally, I think the patient then needs to pay serious attention. For instance, if you are seriously allergic to the antithyroid meds, they are not your wisest choice of treatment. Some folks have underlying heart issues or liver issues, which can limit their choice of treatment option. Otherwise, all things being equal, we usually have a choice. I think that it makes sense to make a list of OBjective pros and cons. Cost. Side effect possibilities. Etc. Then, and only then, take into consideration emotional responses. Our emotional responses are typically out-of-whack while we’re hyper, which is why I think we need to be careful here. The emotional side of things does count, but it’s an unreliable guide.

[snelsen]

#1170754

Bobbi’s post covers the other arm of decisions about treatment that have to be thrown in the mix as you decide what do. Thoughts and knowledge from Kimberly and Bobbi on this important topic of deciding which treatment plan to take, are very helpful for you at this time.

Most definitely, making a list of pros and cons is the way to begin. She also mentioned the very critical topic of knowing that when we are hyper, we are not very grounded in any way. We’re sick. That is an extremely important issue to understand. Quite frequently the pros and cons do reflect what you want to do for your own reasons, added with the list that Bobbi mentioned. Cost, and the realities of where you live and what is available can limit your choices.

[Author]

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