I think this sentence of Pam's most recent post is saying the same thing I just said but, in a different way:

"TRAb tests (biologic) typically measure the type of activity that occurs on that TSH-Receptor when exposed to your blood -- both blocking and stimulating effects. "

TRab measures the type of activity - both blocking (as caused by TBII) and stimulating (as caused by TSI).

So, having a positive TRab result means a person can have either/both blocking and/or stimulating antibody activity.

For whatever it's worth, these were the labs I had when my doctor agreed to start me on replacement:

FT4 1.2 (.8-1.7)
FT3 3.5 (2.0-4.4)
TSH .019 (.45-4.50)

And, these were my antibody levels at that same time:

TRAb 2.33 (0-1.75)
TSI 300 (positive >139)

Obviously, I had high TSI but I certainly wasn't hyper - I had been off MMI for easily 5 months.

Elaine told me that my TRab level must have represented mostly blocking antibodies that were over-riding the TSI and making me hypo.

She also told me that each of us has a different response to antibody levels. Some people will have severe hyperthyroidism with low levels of TSI or vice versa.

Bottom line, treatment should be based upon the thyroid hormone levels only.....

I just don't feel capable of suggesting a "doctor speech" right now since I'm jamming in the office in preparation for a week-long trip that starts on Saturday. Pam already did her usual bang-up job of that anyway :)

I think we all realize that we have to figure out a way to get the doctor to do what we know is right while making the doctor feel like it was his/her idea.

That works for me with my current doctor. It didn't work with my 3 former endos - their egos were just too big.

Thanks you guys! that is so helpful. Pam, I'm going to practice the speech and see what happens. It can't hurt. I sure wish I knew of a dr in the area that does brt but I haven't run across anyone sharing a name as of yet. Carol, thank you for sharing your labs at least that helps me to see a little bit better what I may be looking at. Still no results as of the end of the day....should have had them send it to OHSU for testing rather then the outside lab in Utah they use...LOL

It is a crap shoot and I am just tired of feeling this way. I took a .625 tonight just because I felt I "should" not because I wanted to.
I honestly think i would feel better off the meds and let the chips fall where they may but I don't want to start this process all over again.

I just want to make Dr understand that information from people who live this disease, have worked to get into remission has more value then any text book possibly could. We are all different and I think that is what needs to be remembered but it doesn't mean that what worked for one in a similar situation won't work for someone else. I am hoping he will at least listen and try. Carol, have a fabulous trip and I will keep you guys posted as soon as I get test results, hopefully tomorrow....:))

Thanks for the good wishes for my trip, Cindy - I so need the break :)

I got to thinking after sharing my labs (dangerous thing) and was reminded that I've often wondered if me being overmedicated for much of my time on MMI was the reason my antibody levels were so high when I went off ATD's. I had been dealing with Graves' for two years before seeking Elaine's help just before going off MMI.

Anyway, I thought that sharing some other parts of my history might prove helpful.

I had only two TSI tests done in my earlier days - one at time of diagnosis (the endo I was seeing back then didn't even want to run the test - he was pushing RAI) and the other after one year on MMI while under the care of yet another clueless endo.

My TSI at time of diagnosis was 200 (positive greater than 139) (I'm amazed the site accepted my greater than symbol before lol)

The TSI that was done one year after I started ATD's and had been overmedicated the entire time was 588!!

You already know what the level was when I went off MMI.

Fast forward to 3 months after starting replacement (8 months off MMI) and look at how my antibody levels dropped:

TRAb 1.32 (range .00-1.75)
TSI 270 (0-139)

Here's what they were a little more than a year after being on T4 and 3 months after the addition of T3:

TRab less than .51 (.00-1.75)
TSI 174

I discussed these with Elaine and she speculated that my TSI was artificially elevated since I was taking replacement.

Ironically, while my current doctor told me "We know to ignore TSH in Graves'", I've had to remind her about that a few times.

She is not aware of the fact that taking any form of T3 has a profound effect on TSH and suppresses it when the dose is optimal.

She has checked my TPOab level from time-to-time (I think you know TPOab's are markers of inflammation). I went from zero several years ago to 136 (0-34) at the time of my last test in 2012.

In light of the fact that my Graves' antibody test results aren't too helpful these days and I'm still hypo, I'm not pushing for more testing only because it might give my doctor ammo to start paying attention to my TSH (sigh)

And, since we each have our own response to antibody levels, I figure I'm best off focusing on maintaining optimal thyroid levels while continuing with a Graves'-friendly diet and lifestyle.

One might question why I'm sticking with my doctor. It's basically because I had SO much trouble finding a doctor willing to ignore TSH and I'm doing VERY well on T4 & T3. I'm not inclined to try to fix something that's not broken.

After sharing my symptoms journal as it related to my labs, my doctor accepted my declaration of my optimal levels and noted them in my chart.

She sometimes forgets that she noted those optimal levels represent the *minimum* levels at which I stay free from symptoms. Sharing my journal with her once more has usually helped me convince her to adjust my dose.

The times I didn't "win" were the times I developed symptoms.....all ultimately noted in my journal.

She hasn't made errors with my T4 dose in a long while.

Unfortunately, after being stable on the same T3 dose for over a year, she dropped the ball late last year and didn't give me the T3 dose increase when my labs first showed the need. That mushroomed into the need for a T4 dose increase.

Everything got straightened out.....and there were many entries in my journal :)

I don't expect *that* to happen again.

Unfortunately, it seems some doctors have to learn at the patient's expense....but at least some of them learn vs. those like my former endos who refused to do so.

Sorry if I wore your eyes out. I know that hearing about others' experiences sometimes helped me with my own.

Hope you enjoy YOUR trip, Cindy - Glacier National Park is on my "must-visit-before-I-die list"

And, Pam....as always, great to brainstorm stuff with you :)

Since we know that, no matter what my level of TSI, I'm definitely not hyper, one might wonder just what is going on with me since I obviously have an unmeasurable level of TRab.

Elaine has speculated that I am now dealing with what is called autoimmune atrophic hypothyroidism which basically means that my thyroid has atrophied from the antibody attack.

I am aware of others who are hypo yet have low antibody levels or none.

Yes, the thyroid has amazing powers of regeneration (I am aware of people who had TT's yet their thyroids re-grew).

While it would be nice to not need any type of thyroid meds, I've decided to stop hoping for things like that and just be grateful for the fact that I can still feel awesome while dealing with thyroid disease.

OK...enough of my rambling - I need to get back to work lol

Best to all of you!!!!

Carol, that is the beauty of this board -hearing each other's stories.
I know what you mean about a break although I doubt my vacation is a restful one...LOL Peaceful but not restful....:))

Ok ladies, one more question - I am probably going to have to lead Dr down the primrose path if he'll go - should I ask for 2.5 or 5.0 plus T4?
He probably won't know the protocol from there so what do I offer if anything? i,e, labs, how often, and how long on this protocal, etc?
Man, I wish I could just find a BRT dr and not have to mess with any of this...:)) But if wishes were wings we'd all have some...LOL

I will post in a new thread when and if I get the Antibody results.
Blessings everyone!!!
Cindee

Elaine mentions starting BRT with 5mg MMI and 50mcg T4 (levothyroxine)....and then adjusting the T4 dose as needed to maintain an appropriate FT4 level.

Since it takes a full 6 wks. for levels to accurately reflect time on replacement hormone, that is the frequency with which you should get labs after starting replacement and also after dose adjustments.

For whatever it's worth, I have found that optimal levels don't necessarily "stick" for a variety of reasons.

So, if my latest-greatest dose adjustment optimizes my levels and I don't need another adjustment moving forward, I'll only go 4 wks. for labs the next time.....just to play things safe.

Invariably, my labs have shown the need for a slight dose adjustment and, by getting it in a timely manner, I've been able to escape symptoms.

Your body (via your FT4/FT3 levels) will tell you how long you need to be on BRT. Elaine has mentioned that the ATD is eventually withdrawn and people continue on only replacement (but hasn't mentioned timeframe since everyone is different).

She likened my situation to skipping the BRT part and joining the Graves' patients who are just on replacement lol

I remember someone on here who didn't do BRT but, she went into remission and then wound up on Synthroid for awhile. She titrated up to 100mcg (as labs dictated since she already knew her optimal levels) and then wound up having to slowly decrease her dose and finally go off. This was all based upon her labs. I believe she's back on Synthroid but, I'm not sure what dose.

At the end of the day, optimizing the FT4/FT3 levels is all that matters. Optimal levels = no thyroid symptoms.

Best of luck to you!!!