Ok, so he said I could manage the MMI as I see fit but he does not do combination therapy and that is was outside the standards of practice. So what do I do now?? :))

I went and had a look at what your Aug labs read. Your FT4 is low on the .625mg and your FT3 was just under mid range...I think now is a really good time to wean off the MMI and see what happens...being low on your FT4 could very well cause your antibody readings to be a bit high...Big Hugs...Kathy

Thanks Kathy. That is what I am thinking. I was actually on 1.25 mg and I was trying to stay there but history repeats itself in that I drop the FT's when I'm on that dose for more than 30 days....

I do think I will wait until after my trip (8 days backpacking in Glacier National Park) before weaning off - not sure how to do that either...LOL
Doesnt sound like I will have much input from the Dr at this point other than a lab slip.

Thanks so much again,
Cindee

Sorry to hear that your doctor let you down, cindeeh.

You know I went through similar.

Even though BRT seems quite logical to me, my current thyroid doctor (an internist) wanted to refer me to an endo if I wanted such a "complicated therapy".

I agree with Kathy (as you know from your other thread). I see that you posted on Elaine's forum and she advises staying on MMI until after your trip.

You could try going off now and bring the MMI with you in the event you feel nervous but, I wouldn't prolong the inevitable.

I do agree with your doctor - the important issue is proper thyroid levels.

Best of luck to you!

Thanks - so how do you recommend weaning off? I've been on .625 for a couple of days. I figure since he said I could manage the MMI how I saw fit, this would be the next logical course. Now my question is - what can I expect during this phase? Any hyper symtoms, etc? How long does MMI stay in your system? Dr didn't really respond with any type of suggestion so feel I'm pretty much on my own at this point and he'll just help monitor.

I want you guys to know that I appreciate all you shared with me - very valuable. Yes, Elaine said pretty much the same thing except to wait - not sure about that as it's not like I can call a taxi...LOL

So appreciate the weening process info - I remember Elaine talking about every other day for awhile, etc and I know some have just gone off....:)) Scary next step but you all are invaluable. Thanks for holding my hand through this next step....:))

BTW - he didn't let me down - he responded as I expected he would.

Cindeeh

Some people report transient hyper symptoms after going off ATD's.

As you know, I went off 1.25mg daily and my labs were "better" (higher in the range) than your most recent levels.

I had quite the large number of hypo symptoms at that point and experienced no hyper symptoms after going off MMI.

Instead, a good number of my hypo symptoms slowly dissipated as my levels improved somewhat (never getting up to where I need them to be)

It wasn't until 5 months later that my levels tanked and I started replacement.

MMI stays in the system for 2-3 wks.....tops

Thanks Carol. Ok so Dr just blew my socks off when I told him I was
going to withdraw from the MMI - he said he was excited that I was considering that....l'm like "duh" if it is time why in the world wouldn't you recommend it???? Maybe because I keep telling him what dose I am and am not willing to take...LOL Maybe I've been my own worst enemy. I guess the key would be to just ride it out for a few weeks and see how things go. What is the initial lab draw after going off since there may be those transient episodes? I remember reading that somewhere.....:))

I think I'm getting excited to at least try and see what happens.

I could tell you stories upon stories about the nonsensical things doctors say/do when "practicing" thyroid treatment.

Yes, sometimes we are our own worst enemies and I think a lot of that is due to the fact that we've had to lead our treatment when the doctor should have been doing so all along.

I met my current doctor one month after going off MMI. She had me get labs every 4 wks. just to stay on top of things.

Please understand that, just because someone has transient hyper symptoms doesn't mean their labs will go hyper.....at all.

It's all part of the body getting used to life without ATD's and the ultimate change in thyroid hormone levels.

Any time our thyroid levels change, it's realistic to expect symptoms.

I'm very excited for you! I know you've worked very hard to get where you are today so it's time for you to reap the benefits.

Just keep taking selenium and maintaining a Graves'-friendly diet and lifestyle.....that's the best you can do.

Thanks for the heads up. I will be in touch more after I get back and see how he suggests coming off the MMI - I figure with being on .625 it really isn't going to matter and I may just drop a day here and there and see how that feels. I am excited to get back to feeling better and having more energy. I'd rather be hyper than hypo any day....:))

Thank you guys so very very much. Can't do this without you!!

When I weaned of PTU I did it really slowly. With each reduction I would spike. When I stopped all together my FT4 spiked for about 2 weeks and I experienced many of the hyper symptoms but to a lesser degree. I did stabilize...however...I am one of the 20% of graves patients that has gone slightly hypo. I take 50mcg of Synthroid each day...Big Hugs...Kathy

Kathy, Thanks that helps a lot. When I first started MMi, within 2 weeks I had all these "symptoms" - I had no idea what to expect nor did the Dr care to explain what was happening to my body. It was very scary and basically I was told to shut up and take the medicine...thus we found Dr #2...:))

I do wish I had a TSI to compare to the first one. I feel like we are comparing apples to oranges with the Trab that he ran...oh well, maybe Dr #5 will help - i say that because my primary physician moved and I need to find a local clinician I can work with on other basic things so I figure I'll ask them if they are familiar Graves and maybe coax them into running a TSI - can't hurt to ask - I handle No rather well...LOL

Thank you all and I will begin the withdrawal process when I return

Hi Cindee,

So I checked here and Elaine's Q&A, so I'm caught up. Yep, those darn blocking antibodies are messing with you. So many of us go down this side road, so your not in unexplored territory.

But all in all, a good day. And you may now check the box " no regrets at this point, the doctor had his big chance to step up to the plate, and I did the best I could". Sorry if my babbling about BRT right then, even though it seemed his answer was clear earlier. We do see some doctors come around, and it is often exactly at the point you were at. Steady, good levels, track record, needing a lower dose, and antibody results coming in. It's one of these moments in time that only happens like that once.

Stopping meds experience: I was lucky I had one longer term Graves' friend in my first big support group go there ahead of me. She bounced up and down for the first couple months, then slide too low. So when my turn came and the same thing was happening, I was able to hang in there and stay calm . Unfortunately I too slide hypo, and then ended up dishing out wads of cash finding a doctor that would treat me, not my TSH. I'm so grateful when that phase finished for me, I was running out of money.

No regrets, check. :)

I guess I'm kind of dense tho with the blocking antibodies. I haven't paid.attention to those discussions so guess I have to backtrack and research what this means for me going forward... feel.free to jump in here...lol...Dr 5 didn't pan either as not accepting.new patients so guess I will.just hang out for now. Should I pursue getting a tsi? Thanks for everything.nlmlkf

Back when I came off MMI (2009), I didn't remember reading much about blocking antibodies beforehand.

In fact, I had been in contact with Elaine Moore when I was on lower MMI doses and she never mentioned them as a possible cause of my continued suppressed TSH on decreasingly lower doses.....until I went off MMI.

I'm at the point that I no longer seek antibody testing for the plain and simple reason that each of us has a different response to antibody levels. I am hypo with suppressed TSH so I know either/both of the following two things are happening: my TSH is suppressed because of blocking antibodies and/or because I take T3 (it's a biochemical thing).

If antibodies were no longer doing their thing, I'd need decreasingly smaller doses of thyroid hormone replacement.....and that hasn't happened to me.

While Elaine says I have moderate hypothyroidism, I am taking doses that would be considered full replacement doses (as in, a healthy thyroid makes approx. 100mcg T4 and 10mcg T3 per day and I'm taking 125mcg T4 and 10mcg T3 per day)

Yes, a TSI test is imperative to confirm/rule out Graves' and maybe one every 6 months or so when on ATD's to monitor progress.

However, if a person is hypo on the smallest possible dose of MMI and their TSH is lower than .3 (low end of normal), there's a good chance blocking antibodies are coming into play.

Thyroid treatment is always based upon the actual thyroid hormone levels - FT4 and FT3 and not the reason they are what they are (antibody influence).

Antibody testing is relatively new. Before that, people just slowly weaned down and off MMI based upon whatever dose was needed to maintain an appropriate FT4 level.

If TSH didn't "hit" .3 on the lowest possible dose, it was reasonable to expect that hypothyroidism might follow - if "only" temporary.

Hope you have an awesome trip! I'm just back from quite the restorative vacation :)