Thanks Pam,yep this may be it - the graphs look really familiar to me here:

http://www.eje-online.org/content/158/1/69.figures-only

Snippy, you might find those graphs pretty helpful too for looking at surgery vs RAI or to bring to your endo. I do find it silly that they arbitrarily stopped the meds at 18months though....of course some of the patients went hyper again!

When I was first diagnosed all of my doctors were stuck on thinking that you had to be on meds for 18 to 24 months before remission could be tested. For some reason...this was the golden rule. I was told that you cant be on meds for longer than 24 months and regardless of where you were at with levels...if you were not in remission you never will be. Hogwash! I was on meds for only 4 months when I went hypo but because this was the golden rule...they kept my hypo for over a year...way longer than I needed to be. When the 24 months were up..they didnt taper you off...they just stopped the meds...its no wonder so many go hyper again...thats when the docs say...see...you will never achieve remission...you must have a permanent treatment. Hogwash again. Its so frustrating. Big Hugs...Kathy

I agree with dairytech- I also told myself that if the medications didn't work I would have a TT. RAI never sat well with me and never will. I know three people that have Graves, all had RAI. One in particular regrets it deeply- she is only 30 and told me how the RAI has ruined her life. She's been on a never-ending search for a doctor who will medicate her properly. She was rushed into that RAI by a doctor- she beats herself up about how she didn't research anything. She reinforced how lucky I am to have my thyroid. I would wait until you see those labs and investigate thoroughly before you make any permanent decisions. I also wouldn't be swayed because you got the opinion from the "head doc in the department" either- just because they are the department lead doesn't make them an awesome doctor. I would get multiple opinions from multiple endos, too, along with lots of research. With my Graves experience so far- I'd be scared out of my mind to trust these doctors with medicating me properly after such a procedure. Hard decisions- sorry you are in these circumstances. Best of luck in your decision!

Kathy's story reminded me about what endo #2 told me.....she was "giving" me 18 months on ATD's and if I didn't enter remission by then, she wanted me to have RAI.

Doesn't matter that she overmedicated me and would have had me on a too-high dose when she wanted to pull me off.

And, she didn't blink an eye when telling me about one of her patients needing a second round of RAI. I can't imagine what a hormonal mess that poor soul must have been.

I've read stories of post-RAI patients developing TED years after the procedure. Based upon the fact that antibody levels were shown still high for post-RAI patients on the graph that was linked, this shouldn't be surprising.

And, we all know what antibody levels can to do our sense of wellness. If antibody levels surge, our thyroid hormone levels can surge.

Well, antibodies (and hormone) are "thrown off" as the thyroid slowly dies from RAI.

I just can't imagine anyone feeling good for a long time after RAI......let alone achieving any stability. :(

I blew up the graph to get a closer look.

http://www.eje-online.org/content/158/1/69/F1.expansion.html

Antibody levels 5 years post-RAI are HIGHER than after being on meds for 6 months.

Even though I've seen this graph before, that antibody fact alone makes me happy I didn't choose RAI.

No more thyroid to attack means those antibodies will be looking for something else to attack (while still attacking whatever thyroid tissue it can find)

To be fair though, there's no guarantee that after surgery TED won't flare. There's someone on another board who had a TT and FORTY years later developed severe TED. I think that's probably really rare, but just knowing it can happen is sobering.

Just remember Snippy, RAI is CHEAPER than surgery, don't let them talk you into it,cause they might do it for that reason. You've been given very valuable advice,what pam said and the others about having a doc that won't keep you hypo after you have it done, then you're really screwed if that happens. That's the thing, the doc who treats you is the key With the after effects of RAI plus a lousy doc=miserable patient. If I had to, I would opt for surgery.I've heard too many nightmare stories. Some being people who we advised against it and they come back here looking for help, which we can't always do after. Of course we feel for them and support them and still give advice but usually it's because they did NO research at all. An informed patient is always better off no matter what.

Brans is right. RAI is much cheaper

. The hospital I asked at would give me the RAI at cost, since I didn't have insurance. $400 is all they wanted. I've seen others in lower cost of living parts of the country get RAI at $200 cost.

My first labs were over $400 !

Surgery is thousands of dollars, so naturally the doctors where you are going Snippy will lead to towards RAI. Simple economics.

Surgery is a good choice, and one that might work well for you. You will still have to battle to get the right labs and the right dose of T4, but surgery has so fewer risks for people like you and I.

This is one time when you really need to stand up for yourself ( which I know is hard for lots of people) and insist on no RAI, the risk are just too high when the budget is part of the picture.

I say this taking your personal history so far as the biggest part of the reason RAI is a much bigger risk for you, than for many others.

Rain,

That's a good reminder..surgery or RAI do not solve Graves'. They only make one hypo, not hyper.

The very large group I was part of learning, had so many post RAI TED people join. And often they were years and years post RAI. That's why I always say 20, 30 years since those are the patients I got to know personally.

TED 40 years post surgery is rare enough it gets attention. 20 or 30 years post RAI.. not such a big deal since it happens. Though obviously it's more often in the first three years or so. The crime there is there's really not much those poor people can do except wait a few years while the TED progresses.

And while we're on the subject of cost of RAI. Did you know when I did a survey about a decade ago, those that had RAI with insurance, the price was between $1,800 and $2,200 for the majority. The only one with a "better deal" was Lisa, the gal I have her photo post RAI with the TED it caused. She was only charged $800..she spoke of that many times.

So when the hospital charges say..$2,000, then the insurance co. says they will only pay ____, the cost is lowered but still high. So the insurance co. pays their part and the patient pays to co-pay. I saw a fellow a couple weeks ago struggling to pay off his $900 co-pay.

How does that work ? Did the insurance company pay anything much at all ? Sure a lot of hands out taking parts of the money since the actual cost is so low.

Then remember, after the post RAI patient has a "normal TSH" the doctors put codes for other symptoms under a variety of different diagnosis's.

Depression...obviously not low thyroid levels.
High cholesterol....obviously not low thyroid levels
Carpal tunnel...obviously not low thyroid levels
weight gain....obviously not low thyroid levels
Fibromyalgia....obviously not low thyroid levels
Joint pain and muscle cramps....obviously not low thyroid levels

The insurance companies need to pay attention, but they don't they just process papers and try to maximize profits. After all, patients that do poorly after RAI often loose their job, so loose their insurance. Not the insurance companies problem anymore. They're not stupid.

Another thing I'm a bit taken by with the vocabulary and choice of language I have witnessed with my own endo. My first meeting with him after being diagnosed he promptly handed me a pamphlet containing information on Graves and went through the options for treatment. He first spoke of TT, but within the same breath stated,"but some people say they never feel the same again after surgery". He then spoke of RAI and said," you take a pill, and that's it." And he literally wrote, "NO" on my pamphlet next to the ATD section, explained that that was not an option because I wanted to have another child sooner than later. By the way- I'm sub-clinical, only in a few instances in life I can truly appreciate my "worry-driven, over-analyzing, research-based" personality, served me well in this circumstance. Also, a woman I had been corresponding with on DS's infertility site told me right after my Graves diagnosis, "oh, my niece had Graves disease. She is 13- her parents decided to 'zap' her thyroid, so now she's cured". Wow... certainly a endo would choose to use a more friendly, less serious term... "zap"... Seriously, why wouldn't parents choose to "zap" their child's thyroid rather than have a permanent scar across their neck or subject their child to drugs that need to have tests measuring if there is liver damage occurring? I really wonder how their endo described treatment options to them- I would bet it would be quite skewed- whether it is ignorance or financially driven. Time and time again- we need to get all of the information before making decisions about our health...

I flatly refused to have either surgery or RAI, and I am certainly glad I took that route. I also flatly refused to take more MMI than I needed, especially when I found out that I could get away with it.* I agree with CD--I distrust nearly every doctor's ability to adequately supply replacement hormone, and I don't want to get lost in the wilderness without thyroid.

Graves' is an autoimmune problem that the thyroid just happens to be involved it. Autoimmune diseases are incurable at the present time.

My endo #2, who is much better than endo #1 but far from ideal, sounded like he was trying to give me hope by saying that "20% of Graves' patients go into remission in the first two years of treatment." I think the odds are terrible.

Still, each of us has slightly different responses, and possibly different aspects to our condition. For me, much to my endo #2's surprise, my thyroid levels decreased when I decreased my MMI dose. I felt like the antibodies would only decrease when I was in the more optimal portion of the normal range. I suppose that is in the upper third, at least.

I am now off the MMI and experiencing hypO thyroid symptoms: Tired, cold at 75 deg. F room temperature, brain fog, etc. I intend to fight hard at my next appointment to get my endo to give me supplementation until my thyroid is optimal. If he won't do that, I will go elsewhere for another second opinion, either my reg. doc. or possibly to a naturopath.

*For the record, this is how I dealt with my MMI:
1. I would take the pill or pills at night, not in the morning, because I could deal with lower thyroid levels as I slept. (It may also have helped my lab numbers show how low I was, when I got tested the next day.)
2. If I had something very important going on the next day, and if I would not be getting labs done within the next 2 to 4 weeks, I would "skip" a day's dose so I could function properly the next day.
3. After I skipped a dose or doses, I would tell the doctor. If my labs turned out well, (which they did,) my doctor had to accept the fact that it was good, or at least not harmful, that I skipped the doses.
4. After finding out that I could get away with it on that level, I made a regular plan of decreasing my dose somewhat. I started by skipping one pill every Monday. I was totally honest with the doctor, after-the-fact.
5. After each appointment with the doctor, if he didn't decrease my dose, I did.
6. If he decreased my dose, I would follow his instructions until I started feeling hypo again, then, if I still had 4 weeks or more to my next blood draw, I would decrease my dosage again myself, reporting again at the next appointment.

If there is anything I would have done differently, it would have been to obtain copies of my labs as I went along. I have ordered back copies now, but haven't received word that they have been prepared for me. I will call them, I guess.