I forgot to mention that I had the labs taken on a day "off" from the low dose MMI.

The TSH Receptor AB test measures *all* of the Graves' antibodies: stimulating (TSI), blocking (TBII) and neutral.

Since you have a lower TSI level, it's a safe assumption that you have a decent amount of TBII within that increasing TSH Receptor AB level.

TBII block the production of thyroid hormone and, just like TSI, suppress TSH.

I think you know that TSI stimulate the thyroid to produce hormone and suppress TSH.

TBII can negate the effects of TSI and make the patient euthyroid (normal thyroid function) with suppressed TSH.

And, the ever-powerful TBII can override the effects of TSI and make the patient hypo with suppressed TSH.....that seems to be what is happening to you.

Your labs obviously remain hypo despite the decreased dose of MMI.

The hyperthyroidism treatment guidelines indicate that the patient is to take the lowest-possible dose that will maintain the FT4 level near the high end of the range, regardless of TSH.

Based upon your lab's range, this means your FT4 should be at least 1.45 or higher.

I was in the same position as you were when I was taking 1.25mg daily.....only I decided to go off meds at that point since I had over 20 hypo symptoms.

5 months later, I was in the need of thyroid hormone replacement and still take it to this day. On a "good" day, my TSH is .007.

Being hypo is stressful to the body and can therefore cause an increase in antibody production....and it's usually TBII. A vicious cycle for sure.

Question of the day: how are you feeling? (and how was the hiking trip?:)

Cd,
Thanks much! I find this test so darn confusing and I don't really know why - I guess just because I'm not familiar with it. To answer you question I feel fine. I have a few hot flashes and they seem to be more on the days I take the .0625 than the days I don't. I'd really like to drop the meds altogether and see what happens.....just a little chicken....LOL

The trip was AMAZING! The best "vacation" I've ever had. Great hiking companions, amazing scenery and the hike and weather were great. The let down was coming back out to civilization. LOL
Learned alot from other hikers and can't wait to try some of their suggestions.

Thanks so much for everything!!!!
Cindee

Sort of what we expected as we have gone along here. The TSI are the antibodies that stimulate the gland to over produce, needing the MMI to hold things steady.

The TSH receptor antibodies are a mix of TSI, blocking and binding antibodies that can block our TSH receptors, blocking pituitary from responding and making enough TSH to tell the thyroid gland to get to work. Thus with not enough TSI to do it ( a good thing) and not enough TSH, the poor gland receives no message to produce enough thy hormone.

That's my simple explanation anyway.

Now that we have these tests available, to truly be rid of Graves' by using meds, it's back to a partial BRT. But we know that's not offered to you right now. It's really too bad because you are a perfect patient for this to work well.

Before we had these antibody tests folks took ATDs until they were hypo on a teeny tiny dose of ATD, then after weaning slowly off, we kept track of our numbers and begged, borrowed or stole ( joking) a small dose of replacement hormone.

We MUST keep our FTs up , or not only do we feel bad, the gland increases blood flow, resulting in swelling of the gland, as it attempts to correct the mistake. Left uncorrected this swelling also increases antibody production..that could swing hyper or hypo, depending on if the stimulating or blocking antibodies predominate.

Without the partial BRT, your like most of us in the past. And that can work fine. Tons of folks wearing those same shoes. Each of us has a slightly different story as to how things worked out from where you stand right now. You certainly have more info than I did back when I hit this spot. I flew by the seat of my pants with no idea what my antibodies were doing.

Turned out my FTs kept dropping and the big battle began to get T4 prescribed. They just didn't want to do it because my TSH held at .45. Well, you and I know that's not the whole story.

Eventually I did get a scrip, but not enough .... then over time it turned out my good friend accidentally happened to loose a new scrip for a big bottle of Synthroid, and I just happened to find a way to slightly add to my Synthroid dose, with labs, to get my FTs back to normal levels for me.

I sure don't recommend doing things this way, but desperate times called for desperate measures. I was hypO sick and needed to work. Needed to work to not only feed and house myself but needed enough to pay the doctors. :(

I could have strictly followed doctors orders and stayed sick on not enough T4, lost more of my life, and eventually gone more hypo, OR the TSI could have increased enough I would have had a "relapse"..as they call it. Then I would need to work extra to pay for another three and a half years of PTU, appointments and labs. Would my eyes have survived enough to avoid many thousands of dollars of surgery ? How would I spend my old age then, what with having to sell my home to save my vision ?

Ya.. I cheated.

I continued working with the things that had proved right.. diet, stress etc. Two years into T4 my symptoms caused by trigger foods and trigger stress faded away,. Rather than spend a min. of $1,200 for the correct labs including what antibody tests where available at that time. I stopped my T4 to see what would happen because this new lack of trigger food reactions was such a big thing.

Turned out this was the right thing in my case. My FTs continue to stay where they belong.. so far. Apparently I made the right guess that my blocking antibodies had dropped enough over that two years on T4. Would have been nice to have those labs before dropping the T4, but I'm a self pay customer. I have to be smart or spend more $.

Jokingly I call my method " The Poor Man's BRT", because a big part of BRT is staying on T4 for a min. of 2 years after ATDs are withdrawn, in order to slightly suppress the TSH and allow the gland to rest, thus letting the antibodies to drop further.

Each of us has a slightly different story during and after ATDs. This one happens to be mine, and I tell it to show a little more about how the antibodies function, and that each of us can be capable of working within or around the system. It's a matter of educating ourselves, keeping close track of our labs, and mostly keeping our FTs where the heck they belong, taking as few out of the box risks as we can. Which if you think about that, is fewer risks than the medical insurance industry puts on us .

Pam
Thank you for the help and I think I'm getting a little better on understanding how this test works. I wish I didn't have to do the homework and I could trust that my health is being taken care of but we all know that isn't to be the case. As you know I am not able to get block and replace which would be an answer to prayer unless you know of someone that will do this...:)) I am pasting my "conversation" with Dr and of course the latest conversation is on top so please scroll to the other end of it to get the beginning. As always my question is "what do I do now?"

Lets just continue the plan as outlined before (1/8 pill every 2 days). As you know, I am not a big believer in trying to titrate the methimazole based on antibody levels. December will be a good time to check things again, maybe we can stop stuff then.

Sincerely c vanek

----- Message -----
From: HENDERSON,CINDEE D
Sent: 10/12/2013 2:03 PM PDT
To: CHAIM VANEK, MD
Subject: RE:antibodies

Are the blocking anitbodies what is keeping the TSH down since the TSI is normal? How do you feel about stopping meds altogether and see what we get in Dec? Everything is holding well and I know I feel better on days I don't take the meds. I'll do as you advise.
Have a good weekend and thank you for answering me on a Saturday - I figured you would get to it as you have time during the week.
Cindee

----- Message -----
From: CHAIM VANEK, MD
Sent: 10/12/2013 1:50 PM PDT
To: Cindee D Henderson
Subject: RE:antibodies

No, the overall results are excellent.

----- Message -----
From: HENDERSON,CINDEE D
Sent: 10/11/2013 6:33 PM PDT
To: CHAIM VANEK, MD
Subject: RE:antibodies

Great news!!! TSI was 175 when I started and that was like Aug 2011 and has not been taken since. Are you concerned that the Trab increased from 2.17 to 2.65? What does that indicate if anything?
Thank you,
Cindee

----- Message -----
From: CHAIM VANEK, MD
Sent: 10/11/2013 5:01 PM PDT
To: Cindee D Henderson
Subject: antibodies

Hi
Both levels came back. The TSI is normal at 89%. The TSH Receptor Antibody is slightly positive at 2.65. These are encouraging results.

Sincerely c vanek

LOL..Pam...your story on Synthoid is pretty funny...only because I've had to do the same thing...I'm actually doing that right now. I have a script for 50mcg but have had to bump it up to 100 over the last month or so...I have to do this every once in a while. My pharmacist wouldnt refill my order because it was too soon...I told her I was going on vacation and she filled it...lol...I lied but got what I needed.

cindee...I havnt been on much lately and cant quite remember all you've been through...question...why arent you going off ATD all together and testing remission? Even if you have to compensate with a small amount of Synthroid...you are still in remission. Even though you are on such a small amount...you are still hypo..which could be causing the symptoms you describe. As far as the antibody tests are concerned...I still get confused but have decided that unless my levels are where they are supposed to be for me...they arent a true reflection of where I am at. As long as I are off my levels regardless of what side...I generate antibodies. If my levels come in low and I am hypo...I would not be all that concerned. Basically what it is telling me is I have graves...Big Hugs...Kathy

Thanks Kathy, Miss you being around over here...:))
As per the "conversation" I posted with the Dr - he doesn't want me off the MMI yet. I'm sure he is still trying to resurrect the TSH number and I have had the conversation ad nauseum with him about it....:))
I do think I will go at least every 2 or 3 days and see what happens.
The hot flashes are worse on days I take the meds. Other than the TSH I can't understand why he won't let me go off and see what happens. I think I'm going to be fighting this fight for a long time.....
I wouldn't even know where to start on the Synthroid and it would be nice to see what the levels would do on their own....:))
Guess I'm still a chicken to totally go off and have to face him in Dec...:))
Have a good one!
Cindee

My docs didnt either...they kept me very hypo for over a year. Once I got a better understanding of all of this...I went ahead and reduced until I was able to come off all together...my docs had no idea I was doing that. When I got the results I wanted I shared with my doc...if I didnt get the results I wanted...I waited until I did...luckily...it all worked out. Because of my self medicating my doc learned I truly had a handle on my maintenance and now just gives me what I ask for...at the end of the month I'm going to ask for a higher dose of Synthroid so I dont have to go through deceiving the pharmacist...she wont have a problem with that. Sometimes we have to resort to less than honest means in order to get well...Big Hugs...Kathy

Thanks Kathy. I am going to think about getting a second opinion from a Dr a bit closer that I have thought about going to and seeing what he would recommend at this point Probably a TSH situation again but I would like another opinion. I really think I need to try going off completely but I did get "permission" to go every 3rd day so that may help some too. and who knows maybe I'll just "stretch" it out a day or so more...LOL It may be worse to take it hit and miss but doesn't MMI stay in your system for a while anyway??
Thanks for always being here.
Cindee

My 2nd Endo told me that the MMI stays in the body for 2 months.

That endo also told me, twice, that if he reduced my dose I would go hyper. I didn't, and even went more hypo.

When I went off the MMI for good last December, I simply knew I was hypo and waited for the blood test, then went off it before even getting the test results. I told the Doctor what I had done and he said I had done the right thing. Still he wouldn't prescribe the supplement.

Now I found a doctor who prescribes me supplements--first Cytomel (L-T3), and now Levothyroxine (L-T4)--I have proven for myself, at least, that the more optimal my thyroid is regulated the more it seems like the autoimmune component is relaxing its grip. [I have the antibodies of both GD and HT (Hashi's), possibly even Low T3 syndrome.]

It is somewhat counter-intuitive that even the TSH should have gone up when I have increased my L-T3, which I did in increments from 1/8 of a 5 mcg pill to 1/2 by my last blood test, but it did. Doctors seem to like logic better than counter-intuitive results, so don't expect a lot from them.

The bottom line is that you need to take charge of your own health and do what is best for yourself.

Rule #1 The doctor can't really make you take anything. He can't make you submit to RAI or TT.

Rule #2 You can always go elsewhere for a second opinion.

Rule #3 It is easier to gain forgiveness than permission.

Rule #4 Be honest with your doctor, after the fact.

Rule #5 If you become Hypo, it might be even harder to get supplementation than to get permission to stop the MMI.

Rule #6 Learn as much as you can about the thyroid so you can talk intelligently with the doctor.

Hopefully that is helpful. :)

Fern,
Thank you - very helpful insight and very true. If it hadn't been for everyone here and Elaine Moore I probably would have been so low hypo I'd never recover...
Blessings to all of you!