[James]

#1061081

Hello,

Ideally Doctors should work closely with their patients in a collaborative manner in order to determine the best option for the patient, with the patients interest at heart of course. Sometimes there are biases that can get in the way with both patient and doctor.

For me, the choice of using the ATD option provided me with an opportunity to get well again without having to take permanent action. As biased as my first endo was concerning treatment options, I pressed for what I thought was best for me in my particular situation.

I am attaching the link of an article that was forwarded to me by one of the other facilitators which really speaks to the heart of your question. I think you may find this insightful.

http://www.endocrinetoday.com/view.aspx?rid=85888

Best Regards,

James

[haren001]

#1017815

Is there anyone out there who does not want to have radiation treatment or thyroid removal? (not because a doctor gives you reasons not to; just that YOU don’t want to) What has led to your decision?

[Kimberly]

#1061082

Hello – I’ve been on ATDs for going on 4 years now, and I don’t have any plans to pursue a “permanent” solution unless I have issues with WBC or liver function.

I feel pretty well now, and my preference is to *not* trade that for the process of finding the right dose of replacement hormone following RAI or surgery. Following these treatment options, once you are hypO (which happens immediately after surgery, but can take weeks or months after RAI) your doc will make an estimate as to the level of replacement hormone you need. Then you need to wait several weeks in between labs to see if the dose needs to be adjusted. Some patients have to go through several iterations of this process before finding that “sweet spot” of replacement hormone that will keep them feeling good. I think that many docs neglect to mention that it takes time to find the correct doseage of replacement hormone after TT or RAI – instead, they make these treatment approaches sound like quick fixes.

Also, I have mild eye involvement, so that would certainly be a consideration prior to choosing RAI. And my insurance won’t cover *anything* Graves’-related, so if I were to have surgery, that would be 100% out of pocket. Yikes!

However, even by remaining on ATDs, I spend a LOT more time in my doctor’s office than I would like. I get bloodwork done every 3-4 months when things are going well, and more often if my levels start to get off kilter. With Graves’, none of our treatment options are quick fixes!

[msmanatee]

#1061083

I am avoiding radiation treatment and thyroid removal because I’m not even hyper yet. Isn’t going by symptoms as reasonable as any other decision pathway? It’s not like you do one or the other and bang you are cured.

Only my TSH is low (antibodies high). My doctors disapprove and want me to choose one or the other "ASAP" because I have moderate TED (eye disease). They think getting rid of the thyroid will "stop the antibodies faster" and prevent worse eye damage. When I confronted them with info suggesting that disabling the thyroid does not necessarily stop TED, they rolled their eyes and said, "Well there are no guarantees…"

I’m also being told I must prepare for imminent orbital decompression surgery, that it’s the most difficult kind (no fat to remove so only very precise bone removal). Who in their right mind takes on an elective procedure while facing mandatory emergency surgery? I’m looking for a true TED specialist, have received some suggestions, welcome any more. The so-called TED docs here are ALL cosmetic surgeons, even the ASOPRS members. Have just heard good things about Johns Hopkins’ eye hospital.

[Bobbi]

#1061084

There are good medical reasons for avoiding ANY of the treatment options available to us. Irrationally discounting any one of them can do us harm. Sure, we all have preferences. And, in a perfect world, we would be able to choose whichever one we feel most comfortable with. But it’s not a perfect world. Some folks are allergic to ATDs. Some folks’ livers cannot tolerate the extra load that ATDs put on them. Some folks cannot control their hyperthyroidism sufficiently on ATDs, and they go into and out of hyper and hypo all the time. They should look at the other choices. Some folks have heart disease on top of things, and that might dictate doing ATDs instead of RAI or surgery. Your doctor is the person to listen to about such things. If you have a choice, consider yourself lucky. If the doctor says you don’t really have a reasonable choice, listen to him/her and really carefully try to understand the reasons: ignoring the advice might be the worst possible thing you can do. And if you don’t like what you hear, go to another equally well-qualified doctor for a second opinion.

The bottom line is that we have three good possible options to make us healthy again. Some of us prefer one treatment over another. But just because I chose option "A", it doesn’t mean everyone else should or that anyone else can safely do it for the same reasons.

And, BTW, msmanatee, oculoplastic surgeons are not "just" cosmetic surgeons. I think you may be misreading the "label."

[Kimberly]

#1061085

@msmanatee – There was a study done in 2008 that showed that TSH Receptor Antibodies (TRAb) actually *increase* for up to a year after RAI, and can still remain elevated 5 years after treatment. In terms of antibody reduction, ATDs and surgery had similar profiles, where the antibodies gradually decrease over about an 18 month period. Here’s a link to the NIH summary; you can also download the full text from the site:

http://www.ncbi.nlm.nih.gov/pubmed/18166819

Some doctors do believe that there is a direct correlation between TRAb and severity of the eye disease, but not all docs agree.

As for centers that specialize in TED, we have had presenters at our conference from Shiley Eye Center in San Diego and Kellogg Eye Center in Ann Arbor, MI.

[JennaV]

#1061086

I chose to avoid RAI because I have a nursing baby, and RAI would have required weaning him. Since I have no intention of weaning him anytime soon, my doctor said I had a choice between staying on ATDs and having a total thyroidectomy. Because of the risk of ATDs passing through the breastmilk, my baby had to have his thyroid levels checked every 2-4 weeks while I was breastfeeding. My son’s pediatrician and my endo both agreed that it would be fine to remain on ATDs as long as his levels stayed normal, but for his sake and for the sake of future children (ATDs are not entirely safe during pregnancy), I decided to have a thyroidectomy.

I am about 2 months post-thyroidectomy now, and we are still working out my T4 replacement dose. This process does require patience, but I am happy with the decision, and looking to the future, when my levels are correct, I am very optimistic.

[msmanatee]

#1061087

Bobbi wrote:And, BTW, msmanatee, oculoplastic surgeons are not "just" cosmetic surgeons. I think you may be misreading the "label."

I am aware that oculoplastic surgeons are not only cosmetic surgeons. My point was that in my area, cosmetic surgery is their main business. There are very few TED patients in this small city but plenty of cosmetic surgery customers as it’s a wealthy elderly population (Florida retirement mecca).

@Kimberly, thanks for that link! I went to see a new endo, who also confirmed what that article said. Quite a relief after being dismissed as misinformed for the past two months.

[HonestBabe]

#1061088

I just decided to do RAI and am post-RAI three days since the treatment (I have hyperthyroidism due to toxic nodules; no Grave disease) and it was real struggle to make this choice. Initially, the treatment has gone well and besides some mild fatigue and a mild headache, I’ve been feeling fine. Time will tell how things progress. I was terrified of RAI; read all the pros and cons. Who doesn’t think ‘radiation’ isn’t a scary word? I avoided RAI, thinking it was the enemy, the destroyer, the bad guy. I tried the natural approaches (including acupuncture and Chinese herbs, which helped temporarily). When I looked into what radio iodine really is, I learned it is a fission of uranium atoms. "Uranium" really scared me even more, but it’s quite an amazing material if you look deeper into its origin. Uranium, the heaviest atom in nature, only forms inside exploding supernovas (star explosion) and resides in the earth crust, space and other planets. And if my science information is correct, it was formed billions of years ago. Its half-life is 4.5 billion years so it quite long lasting. Scientists say we likely have about 12% left of the original amount of uranium formed inside our earth and only half of that 12% will be decayed over the next 4.5 billion years (that is if we don’t use up too much for fuel). Anyway, I did find comfort in knowing that I could take something to heal me that the universe naturally created (or God created, if you are inclined to believe, which I am) somewhere in the beginning of time. The decision to choose RAI for me became crystal clear. If we could move beyond the fears and trust nature (trust God), remain positive, opportunities for healing may arise. So, today, my perception is that I have a little bit of God’s starlight radiating through my body to heal me. Thinking of it this way feels like a lovely place to be at the moment.

I’d say to all who are struggling with these types of decisions, find strength to look deeply into the options with an open mind and heart. HonestBabe.

[Halbarad]

#1061089

My wife’s endocrinologist points to variability in her thyroid output (FT3/FT4) as
an argument for radiation or thyroid removal.

The idea is… even with anti-thyroid drugs, there remains the possibility that
her thyroid will spontaneously start putting out hormones for whatever reason.
A month ago she did go into a really sick stage… losing 12 pounds in 2 days…
a potentially life threatening situation… due to a flareup in thyroid output.

She sees the endocrinologist’s point, but is (like most of us) hesitant to remove or
irradiate her thyroid because it is so final, and because perhaps the thyroid
has functions that are not yet fully understood. Also a friend had a thyroid
removal, and feels they have not ever felt right again.

So for the moment she is taking the anti-thyroid drug (methimazole).

But the question we’ve got is… how can we get solid clues as to what drives
her thyroid output up? We think from the various readings that her autoimmune
system is making the various antibodies that stimulate her thyroid. A variety
of the pertinent antibodies *were elevated* 2 years ago in her tests, but,
in this round the endocrinologist didn’t test for any of them… he assumes that
the data from 2 years ago is still valid, and says antibody testing is expensive.

Is it possible to get `early warning’ of a coming thyroid storm from monitoring
antibodies? Or FT3/FT4? Seems like FT3/FT4 build up over weeks.

And the biggest question of all… what are the odds of identifying the cause
of thyroid antibody flareups and preventing them? In 2009 and 2011 her flareups
happened in early summer… could pollens be the origin? Or a food allergy from
a seasonal food? Can allergy testing help?

Thanks in advance. The alternative to figuring this all out, due to the
*ups and downs* she suffers, might actually be radiation or removal.

[Kimberly]

#1061090

Hello – I’m not aware of any formal type of “early warning” system, although this would be a great area for research! In general, I would encourage your wife to keep in tune with her body’s signals. She might find that she doesn’t experience *all* of the classic symptoms of hyperthyroidism, but she might notice that one or more symptoms tend to be prevalent. For me, the rapid heart rate, hand tremors, and shortness of breath are the big tipoffs that I’m heading into hypER territory.

The reasons behind antibody fluctuation aren’t well understood. Stress can have an impact, as can pregnancy or illness/injury. And there has been quite a debate in the scientific community over whether Anti-Thyroid Drugs directly affect the immune system – or whether getting thyroid hormone levels under control is what causes the immune system to eventually back off.

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