Does he have your numbers? What are they? You have to ask Snippy. he might mean tsh. Wouldn't advise RAI too many problems after..get more details.

Please get all lab result numbers and post them here. This includes the Graves' antibodies, as well.

I had thought your TSH was off with off Free Ts.

{{{hugs}}}

P.S.

I went back and looked up your old labs:

July labs (2012)
FT3 3.5 range 2.3-4.2
FT4 0.97 0.62-1.57
TSH less than 0.008 0.350-5.500


Oct. Labs (2012)
FT3 9.5 Range 2.3-4.2
FT4 2.76 0.62-1.57
TSH less than 0.008

TSH being low like this indicates antibodies problem of some sort.

Do you have copies of any of your old labs as well as the antibodies to put down here?

I try to help but often do not get a response from you to answer my Qs when I ask. :-(

{{{gentle hugs}}}

The labs are suppose to be in the mail he said. I will check and make sure I get them and post.

Hi Snippy, please share info....how much methimazole are you on now and for how long at that dose? and labs of course! Hopefully the doc is saying this only because of TSH. How do you feel lately?

They put me back on 30mgs of methimazole again. This was the dose I started on two years ago and everytime they start lowering i go the other way. I'll lose 10-15 lbs one week and 10 day later have it back on. I'm not sleeping unless i take advil pm at night and not every day but sometimes my hands shake other then that I'm good I think. Is ther anybody that has had it done and either regret having RAI or are that glad. I want to hear the pros and cons.

Hi Snippy, I'm on the methi, but I read an insane amount on almost all the Graves message boards so I can share what I've seen. There are a few people who have had RAI who it has worked out for - it can happen. However, there are many more who have a rocky path, at least six months or more struggling with either still being on ATD's or various amounts of replacement hormone as the thyroid sputters out. Some also get TED, sometimes badly within the year after. Now of course this is from support boards, it's not an unbiased statistical study, so of course people with negative experiences will post more. BUT it is clear that RAI is a significant risk especially for the eyes as compared to surgery. The people who get surgery seem happier, it's over faster, they get stabilized on replacement faster. But it is surgery and carries certain risks, though I rarely see unhappy customers posting about it. So if you truly feel you have to whack your thyroid surgery seems to be the way to go if you can tolerate it.... If you must do RAI because you can't handle surgery, you could take steroids before and after to minimize eye risk.

BUT before going down either road, let's look at the labs because there's possibility your endo is saying you are hyper because of your TSH only, gotta make sure that's not the case and you are actually hyper based on the FT4/3. If you are uncontrolled with FT4 and FT3 and 30mg of methimazole after taking it continuously for say a month yeah there's a big problem. How long have you been taking 30mg continuously this time?

And....these are my two cents (maybe more I'm really wordy today)

Yes, I agree with Rain about surgery. You really need to post some history and some labs from a few months ago and now to Elaine Moore. She had RAI YEARS ago and that's one of the reasons she advocates against it.
http://elaine-moore.com/QA/tabid/57/forumid/6/scope/threads/Default.aspx
you post a question after you have registered and only SHE (expert) answers you.

Taking steroids shortly before and after RAI can only prevent TED while the steroids are being taken, when the risk is greatest.

Highest risk for TED is caused by high Graves' antibodies.
RAI greatly increases Graves' antibodies, for life.

Most TED after RAI happens in the first year or two. Still many are surprised 10, 20, 30 years later post RAI when it happens. The biggest problem with TED post RAI is those patients will not necessarily be able to heal their eyes naturally. The bulk of serious multiple eye surgery patients are post RAI.

One risk of the eye surgery is permanent double vision, that can not be resolved. Not often talked about, but I know it happens because I have a local man ( post RAI) here with this problem. After his twelve surgeries they told him there is nothing else they can do for him.

He moved to a farm when he can make a living without being seen by the public, and not having to interact with people unless he is up to it. His wife has fits every time he needs to drive into town, but what's he going to do ?

The worst part of all this is that his main passion is mountain climbing. he's one of those experts. Imagine how that has been.

Snippy,

Remember I am the one with no insurance. I know for a fact that we are the LAST people that should consider RAI. The risks are too great for our pocketbooks. And with insurance it becomes a matter of " Can I afford the co-pays if something expensive like eye surgeries come up ?" When I looked into one eye surgery it was 10,000 dollars for just the one, not counting incidentals. And that was over ten years ago so the price is higher now.

I have another fried here in town 20+ years post RAI with severe TED. She has insurance but has never been able to afford the co-pays for the surgeries she needs. She lives with no double vision, but severely protruded eyes that are red, watery and hurt all the time. She lost her promising career due to her appearance ( yes.. society is this way ), and settled for "getting by".

One of the most heartbreaking things happened when we were walking through an apartment parking lot. Some little boys were playing, when one of them came towards us and pointed at my friends face. " Bugs eyes ! Bug eyes " he proclaimed. ...then all his little friends joined in.. "Bug eyes, bug eyes". As soon as we got away..it was the first time I had ever seen my good friend cry. And I know she only allowed me to see because I had TED at the time. I was the only one that understood.

First you need to look at those labs that are coming. Then later if you decide to not stay on the MMI, surgery is a perfectly good choice.

Yes, there's still risk but not nearly so much as RAI, and it's much faster. You start on replacement hormone the first or second day after surgery.

RAI is slow and unpredictable. What with you not getting labs when you should, RAI becomes a much bigger risk for you, than others that can get labs at the right times.

A permanent treatment dose not get rid of Graves'.
It gets rid of being hyper.

Patients still have problems getting the right dose of medication.

RAI with no insurance and the possibility of maybe not having insurance someday in the future is just WRONG ! The possibility of being on of the happy RAI customers is very low in this situation.

I got off track there... LOL

Please everybody, the main thing here is that steroids ONLY protect the eyes on the very few days( couple weeks on average) it is being taken.

This does NOT lower the much greater risk of TED in RAI patients after these few weeks.

Hi Pam, I disagree....I'll have to find some sources for you but from what I've read taking the steroids for weeks before, during, and after the RAI helps to drastically reduce the antibody spike that happens after RAI lowering the risk overall just not only for those few weeks. There's also a study out there with a graph showing the two spikes for antibodies for surgery and RAI and the rate at which they go down over a period of ten years....the rate is way faster for surgery of course. I'll see if I can find the links for you but I'm feeling depressed as hell tonight so it might be a couple days.

Sounds like a project we could work on together. Maybe in a new thread so we don't derail this one. Once we gather a bunch of links then we can do a thread over in our General Graves' group. That way it's all saved as reference for future members.

Your point that this topic needs further clarification is a great one. Thanks. :)

No rush, I'm not into it tonight. Anytime is fine.

Do you know what I think the biggest challenge is after a permanent treatment (be it RAI *or* surgery)?

Getting properly medicated.

Doctors that don't know how to medicate properly when we are hyper don't know how to medicate properly when we are hypo.

It's all due to that blasted TSH.

The scariest part of being hypo and needing replacement is that a doctor who doesn't know how to medicate properly will not prescribe a high enough dose of replacement hormone.

This is a recurring theme on hypo forums.

And, it's because of doctor's misguided reliance on the TSH test that patient advocacy groups have formed.

One of them started this petition awhile back:

http://www.change.org/petitions/endocrinologists-patients-with-thyroid-dysfunction-demand-better-care

It's clear your doctors don't know what they're doing, Skippy.......I fear for you that you will be living a life of hypohell if you have a permanent treatment while under their care.

I always told myself...if I tried really hard to regulate this disease but could not after great effort and remission appeared out of the question...I would get a TT. For me..RAI is absolutely out of the question unless I had thyroid cancer. We have had a number of members that eventually opted for a TT with great success...only a few had problems afterwards but it was mostly needing a T3 and not being able to get it prescribed.

When making this decision you need to take into account whether the doc you have is capable of treating you afterwards. First find out if he would be willing to give Armour or a T3 replacement if needed. This is very important. Also allow you to lab often enough to get you firmly settled with replacement. Big Hugs and good luck on this decision...Kathy

I think this is the article you may be remembering Rain. I'm dropping the link here for our future reference.

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

TSH-receptor autoimmunity in Graves' disease after therapy with anti-thyroid drugs, surgery, or radioiodine: a 5-year prospective randomized study

Conclusion The majority of patients with Graves' disease gradually enter remission of TSH-receptor autoimmunity during medical or after surgical therapy, with no difference between the types of therapy. Remission of TSH-receptor autoimmunity after radioiodine therapy is less common.

This link goes to the abstract, where you can then proceed to a variety of full length views.