Graves' Disease Support Group

Carol, hope things work out with your new Dr. Now, I'm beginning to understand why you are so thoughtful in helping others not go into hypo-hell. Poor you!

So...as a follow-up question to your post, in general, if one's levels go below midrange, does one STOP ADT medication? Or does one lower it? I ask because from what I read, stopping ADT is not recommended when we reach ideal levels rather, it is best to stay on low dose ADT for 6 months (in a Japanese study) (or 6 weeks according to Elaine Moore). But, in your case, you haven't reached ideal levels, rather you have gone lower. So what is the protocol in that case? I see that you have decided to STOP altogether, but might you risk going hyper again?


All the best,
Naomi

Thanks for your kind words, Noami.

I am very optomistic about my new doctor....truly, I am liking the idea of waiting to see what my body does before starting a new meds regimen like BRT.....since my care has been so grossly mismanged, I'm just not sure where my body is at right now so I do not want to introduce any new variables just yet.

OK...onto your first question....

You already know that the starting dose must first get FT4 levels in-range.

Hopefully, that starting dose will "land" the person at somewhere around mid-range FT4, at least. Once a person "lands" there, usually the starting dose is cut in half.

Remember, that starting dose had two purposes: to eliminate the excess thryoid hormones in your body that brought on the hyPERthyroidism symptoms AND bring those levels down into range.

Once those levels get in-range, the dose is usually dropped down to 1/2 the starting dose.

Now, if the starting dose brings a person to below mid-range FT4, it's suggested to not take ATD's for a few days and then restart at the lowered dose which will hopefully be the maintenance dose.

Many people only "last" at a particular dose for a few months....that is why it is vital to get labs every 4-6 wks. max to "catch" any change in FT4 levels and adjust the dose appropriately and prevent even a short "visit" to hyPOhell.

it doesn't seem like we have to worry about our docs medicating us so we wind up hyPER......because of their erroneous thinking about TSH, they have an easy time accepting in-range low FT4 levels but start with stupid comments about wanting to try for upper-range FT4 levels.

Again, regular labs will help you to maintain stable levels.

Eventually, after taking ATD's, on average 18-24 months, a person might be nearing remission. The dose would continue to need to be lowered to maintain their "best place" FT4 level and TSH just might start "showing".

Elaine Moore tells us that TSH higher than .4 often means remission. Higher TSH early "in the game" is NOT to be confused with this.....it most often means the patient has been overmedicated.

While a person is trying to find their "best place" FT4 level (also known as setpoint), it is a good idea to shoot for mid-range FT4, at least. Stay at that place for a few months, making dose adjustments if necessary.

If that mid-range FT4 results in the patient having hyPER symptoms, the dose would be tweaked up a tiny bit.....if hyPO symptoms are present, the dose would be tweaked down a bit.

Once a person gets in-range, radical dose changes in and of themselves can bring on either type of symptom.

That's why we all say slow and steady wins the race.

I'm confused about your comments about the Japanese study saying low-dose ATD for 6 months and even more confused about your statement that Elaine Moore says 6 weeks.

Would you please clarify this? I've never read anything of this nature - especially from Elaine Moore - I've read her book, continue to read on her site and post questions there as well.

OK....re your next set of questions.....

I don't know how to give a short explanation for my history but, since you asked about me not reaching ideal levels, I think you'll need to understand my full history.

Endo #1 started me on 10 mg MMI and my levels got nicely in-range after 8 wks. (FT4 1.59 range .61-1.76 back then).....I felt great.

Rather than reduce my dose as is suggested on here and by my "earlier" thyroid forum, he kept it the same which made me nervous but I was too early into my Graves' journey to have the confidence to stand up to him.

Turns out it was better he didn't reduce my dose in my particular situation (sheer luck for him, I think :)

Think I told you I had the unexpected event of my FT4 rising slightly above range 4 wks after that - it went up to 1.88. Endo #1 accused me of skipping doses (I already had the "don't want to go hyPO discussion with him - he was quite arrogant and wasn't happy about me being proactive - I never skipped doses, though).

He doubled my dose to 20 mg and, within 4 wks, my FT4 dropped to 1.0 - I hadn't developed any hyPO symptoms by the time of these labs (sometimes symptoms can lag) but he wanted me to continue at the 20 mg. for 8 more weeks (!!!) to "bring the TSH up a bit".

I knew this was dead wrong and called him to express my concern about my FT4 levels dropping even more and me developing hyPO symptoms.....he was so angry with me that he was yelling at me!!!

I reduced my dose to 15mg and made an appointment with endo #2. I shared my history with her but she wanted to keep me at 15 mg "just to see" so we tried that.....my FT4 level didn't rise to my "comfort zone" by the time of my next labs and I still had hyPO symptoms so she reduced my dose to 10mg.

Each time my dose was reduced, I had the expected situation of feeling better after the dose reduction.

Since I was feeling better at the time of my next set of labs, I allowed her to maintain the dose, thinking maybe my setpoint was lower than mid-range (Brans is a perfect example of someone with a lower setpoint - she feels best at FT4 1.0, I think)

Well, the inevitable happened, I started having hyPO symptoms again, we reduced my dose to 7.5mg.....I was feeling better by the time of my next labs (still not mid-range FT4 but higher than previous) so I stayed at that dose thinking maybe THAT FT4 was my setpoint.

Nope....realized this in Sept 08, we reduced my dose to 5mg and I started feeling better and kept feeling better with each passing month.

My FT4 had risen to 1.23 (just slightly above mid-range) by the end of January 09 and you already heard the rest of the story in my earlier post.

Hindsight is truly 20/20. I could have saved myself from trips (or short "visits") to hyPOhell if I followed the advice given to me by the members of the forum I joined shortly after Dx......and the advice I give to peeps on here now.

My Sept. labs showed my FT4 to be 1.23 (slightly under mid-range for the lab's latest-greatest ranges) but I was still having SO many hyPO symptoms, I told endo #2 I wanted to "skip a level" and go right down to 1.25 mg.

I HAD to stop taking meds on 10/08 because the hyPO symptoms had become debilitating. The reasons are explained in the next paragraph.

I was "technically" still under endo #2's care - she was pushing RAI at this point since I passed my two-year "limit" on ATD's.....she did not believe in BRT so I was in between a rock and a hard place.

So, finally, I made the decision to "doctor shop" and decided, worst case, I would meet with new docs regularly enough to get labs, stay with a doc as long as the doc would agree to the meds dose I knew I needed at whatever point I was at in my Graves' journey.

You know the rest from endo #3 forward, including my decision to stay off meds for the time being.

I am getting labs with enough frequency to 'cover" me.....remember, I'm a lot further along in my journey....all those excess hormones have long been gone.....I just need a maintenance dose, tops......or BRT....or I might even be nearing remission.

I am doing just what docs do when a patient has been overmedicated. Early on, a good doc will have the patient stop taking meds for a few days up to a week, depending on the situation.

Since my FT4 was rock-bottom when I stopped meds, I had lots of "room" to go up.

After 4 weeks off meds, my FT4 was just below mid-range and I still had lots of hyPO symptoms.....I'm not at my setpoint just yet.

In light of the info I gave you about my potential situation with TSH being suppressed due to being hyPO causing an increase in my antibodies, there is a chance things will level out for me.

I am getting labs in 4 weeks......if my FT4 increases at the same rate it did before, I will "land" at 1.54.....just below the level I "hit" after my starting dose....the level I felt great at.

Everything is a calculated risk.....my current doc seems quite "up" on all things Graves'.....again, I don't want to start BRT just in case
I don't really need it.

Look at all the stories you've read about how people wound up finding themselves in remission and thinking they probably took ATD's too long......all no thanks to their doctors.

Each of us has to acknowledge where they are in their particular Graves' journey, decide what info fits them best.

My 20/20 Hindsight tells me I should have never stayed at a dose if that dose didn't bring me to mid-range FT4, at least

I never got to "try on" the most common "size" of FT4 level......I learned the hard way it was to my detriment.

I want to help prevent others from making the same mistakes I did.

My doctors never provided me the information I needed to stand a chance at remission.

The experiences and knowledge of the people on here can provide that information.

It's up to the patient to sort through it all and make the decisions for themselves.

Based upon my own personal experiences, I recognize the errors I've made moving forward and I know I won't make them again.

Also, I've realized that I think it's best for me to keep as many variables out of my Graves' picture as possible so I stand a chance of identifying certain things correctly.

For example, I have no idea what my selenium levels are and just learned that higher (yet in-range) selenium levels seem to help stave off autoimmune disease.

I know that it is not uncommon to have more than one autoimmune disease and I would like to decrease my odds of getting another one.

Since I supplemented my diet with 2 selenium-rich Brazil nuts long before my Graves' diagnosis, I really don't know what my "usual" selenium level was.

Also, since Brazil nuts can have inconsistent levels of selenium, I'm not sure that's an optimal choice if I want to maintain higher, in-range selenium levels.

There's also a chance that those Brazil nuts I've been taking have increased my T4/T3 conversion (although that seems to be fine based upon my recent T3 tests - the T3 levels correspond appropriately to my FT4 levels).

And, no, my ever-thinking Naomi :), my docs have never run FT3 for me....only T3. I've read countless posts by Elaine Moore on her Q&A forum that we can "survive" with just T3 or Total T3 being tested since those levels aren't as "impactful" as FT4 levels.

She says the only time a person REALLY needs to push for FT3 is if they are having T4/T3 conversion symptoms and the T3 or Total T3 looks "off" in regards to the FT4 level.

All of that said, I've decided to refrain from eating Brazil nuts until my next appointment with my new doc. I'm going to share with her the info I just mentioned and ask for a selenium test.....I want to have a baseline for MY body moving forward.

Once I see where my selenium level is, I will decide my next step.
I might just opt for a selenium supplement to ensure consistent selenium intake vs. Brazil nuts.

Again, having baseline info "fits" for me.

These are what I call the "finetuning" of my disease and body.

Kinda like how I choose which videos I'll use for any particular workout. Being that I was an avid cyclist in my earlier life, my gluts and legs are like rocks.

My upper body and abs need more attention. I make sure to devote two workout days to specific upper body and ab work.

The remaining workouts are based upon my "mood" for the day :)
since the workout videos "cover" all sections of the body.
(I have easily 30 videos from which to choose).

For me, it's always been about finding the "right fit".

PS Elaine Moore first agreed that BRT seemed appropriate for me just before I met with endo #3. A member from my first-ever thyroid forum relates very well with me and suggested I consider waiting to see what my body does.

After I shared my endo #3 experiences with Elaine, I told her I would be pretty much on my own until I found the right doc. She agreed with me staying off meds and would advise resuming MMI only if my FT4 rose above 1.7 (again, range .82-1.77).....now, she suggested 2.5 mg daily.

You know my new doc's position re BRT......she recommends 1.25mg MMI every other day if my FT4 hits 1.7

Since my Graves' journey wound up being such a roller coaster ride, I'm in no rush to change anything right now.....I'm going to wait and see what my body does......I might just be pleasantly surprised!

Getting labs every 4 weeks (sooner if I have symptoms) will help me stay on track.

My path is very clear to me right now, I am comfortable with the thought of getting regular labs and dosing as I deem appropriate.

I have some time for everything to sort itself out.....I'm confident moving forward and will make decisions based upon the facts at hand, keeping in mind the recommendations made to me.....I want to find the "best fit" possible then.

Thanks for plodding through yet another novel-length post :)

Definitely hope to get clarification from you as mentioned above - we all learn by sharing experiences and information.

All the best,

Carol

PS I'm lucky that I type as fast as I think - otherwise, I'd never get anything done besides post on here - lol

Carol,

I'm not sure I understand your whole story, but I trust you know what you are doing, and I thank you VERY MUCH for taking the time to explain things to me. I have learned so much from you, and I really appreciate it!

As for the 6-week, 6-month question, here is a link to a study on remission (81%) in Japan.

http://www.uptodate.com/patients/c...~KjIIracLshvN/&refNum=19

It states:
"These data indicate that minimum maintenance therapy to keep euthyroid (normal FT4 and TSH) for 6 months is a practical measure for 81% prediction of remission in Graves' disease."

As for Elaine Moore, I have been slowly plodding through her Q&A, and in several responses she suggests that a low dose (1.25mg of MMI for example) be taken for 6 weeks (with stable labs), and then to stop. Here is an example of one such commen from 10/28/09, but there are others. It seems to be her consistent advice:

She says: "After 6 weeks of being on a 12.5 mg dose, you'd have labs and see if you're secreting TSH normally. If so, then you'd stop meds."

So, I'm wondering: 6 weeks or 6 months? Well, obviously I don't have to worry about this yet, but I'm curious; and it may help others.

All the best,
Naomi
(p.s. I type fast, too!)

Noami

Your eagerness to embrace all things Graves' is commendable. Understanding people's individual stories and experiences can make one nuts.

Everyone's experiences are so different, especially when they didn't get off on the right foot (as in my case).

I second-guessed myself too long with endo #2 - I should have been "doctor-shopping" much sooner. But, I guess everyone does everything in their own due time.

I see the BIG issue driving the Japanese info.....,they suggest maintaining a minimum of 6 months worth of maintenance dose after euthyroid with normal FT4 AND normal TSH.

We all know "normal" means in-range......we also know that in-range TSH often doesn't happen for at least 12 months. So, the
Japanese study is saying that, once TSH becomes "normal" aka in-range, then continue to take meds for 6 months to ensure remission.

I don't remember reading these exact comments of Elaine's.
However, I do remember her telling me that TSH higher than .4 (this is in-range at the lower end for most labs) can often mean remission.

I posted this on my other thyroid forum and the "resident antibody" expert took exception to this. The antibody expert said that we must have TSI less than 50 and test negative for TRab (blocking antibodies) to be confident of remission.

The expert herself was in the position of her endo wanting her to stop meds when her TSH was higher than .4.....she insisted on antibody testing and discovered elevated TSI and TRab (blocking antibodies that usually don't become part of the Graves' picture until later, if at all)

So, the jury is out on that one.

I speculate that those who have achieved remission without antibody testing but who initially "showed" TSH due to overmedication.....continued to "show" TSH and be hyPO for so long that they decided to go off meds for whatever their own particular reason may have been

They had the pleasant discovery of being in remission....they had passed the "average" 12-24 months on ATD's for possible remission (I erroneously listed 18-24 months in my earlier post).

According to Elaine Moore, most people achieve remission through ATD's after 2 years....and sometimes as long as 4 years.....the total remission rate with these experiences is 80%.

So, my thinking is I still have "time" to think remission is possible for me.

I hope to get all of these topics addressed in the informational threads Kathy asked me to post in the permanent General Graves' Info section under Groups here.

There's a lot of information and I'm doing the best I can.....I've chosen to "triage" topics such that I provide the info I think newcomers need to get started and move forward from there.

Between the huge amount of resource information I have and the actual number of topics, this is a big task.

I will post new threads in the Discussion section here as I complete them and also let everyone know they will be posted in Groups for future ready access.

I also deal with a lot of messages from new members so I hope everyone can bear with me.

I do have my own business to run, a son getting married next year and two still at home......thank goodness, I don't anticipate any more "delays" with stuff due to 'detours" to hyPOhell.

All the best,

Carol