That makes sense Branns and mmz. Yeah tweeking on my own is like breaking some unwritten rule...:)) I may take the plunge and reduce for a few days to see how it feels and if I can maybe reduce some of the symptoms - would guess tho it will take more then a few days to really know. Next labs are 5 weeks away.....

I think from feedback from Pam I believe, that the TSH has responded because I was dropped so low, so quickly that it went,
huh,,,,guess I better do something so it did. I really don't expect it to stay up or readable once the levels are more stable. I just want to see how I feel at mid range....

One other question - have you noticed the symptoms changing from day to day or within a few days? The hot flashes seem to be better but the phlem and the throat/pill swallowing seemed to take its place.....weird. but so is this disease...
Have a super weekend - we actually have sunshine and 60's so
going to go enjoy the rest of the afternoon raking leaves...."))
Cindee

Yes.. as yu dropped low quickly, the TSH responded. Then once your dose was lowered and you were able to stop the drop and raise the FT4 a tiny bit, it was enough the TSH came back down a bit.

So the real question is... is the TSH now still in the process of reducing further due to the antibodies working in it's place....

Or is the antibody situation resolving, resulting in you entering remission, in which case the TSH will be able to work normally ?

Perhaps the biggest lesson here is most doctors believe as long as our numbers are within the reference range, none of our symptoms are caused by thyroid.

What would you do right now if you were either post RAI or post surgery and needed an increase in your replacement hormone ?
The only way to purchase thyroid hormone is with a prescription.

Pam, you are exactly right. In a perfect world I be on BRT but endo won't consider it, won't consider that I have hypo symptoms even though I'm below "mid range". Thats the frustrating part. I am hoping that with a reduced dose of atd the levels will come up - the next 5 weeks will tell and if not then I have to do something different and the what/who is the major question. Truthfully, I think the tsh is reacting to me being over medicated - with only 4-5 months into this I doubt remission is occurring - would be nice but I don't believe it is.

So one more question - do the hypo/hyper symptoms occur based only on FT4 and FT3 or do the antibodies come into play? I've never
been real clear on that one.
Thanks

Ha ha... leaves still laying on the ground huh ? I went and looked at mine when I read your post, but I don't have enough down yet to really bother with. Our first cold night to start the color change was the middle of this last week. So I have some bright yellow.. waiting for the orange and red. The yellow is still so bright it's reflecting the light onto everything. Pretty !
Boy the hostas turned and dropped darn near overnight. I'm always sad to see them go, but I need to devide a bunch this year, so I guess it's time. Probably should go out and do that, but I'm not excited.. maybe later.

Back to thyroid stuff....

You think not remission. well, there's a bell curve. Someone needs to anchor that fast to heal end. They say 30% of cases end in spontaneous remission.
In my younger years it seems I have had several flares up and was misdiagnosed....family pictures combined with memory and those supposed diagnosis at that time all add up. Both of my good doctors would only say when asked.. you've most likely had this for years. They would not commit to how many years, and how could they. So those would be part of that 30% right ?

But it seems like your current situation sure could be in the group. Look how fast you went own and what a tiny dose your playing with at such an early stage.

Or.. maybe the stimulating antibodies are dieing out and being replaced by blocking antibodies ? Antibodies can change. I hope that's not what' going on becasue you don't yet have a good, kind doctor by your side. One that's willing to prescribe replacement hormone when it's needed becasue that's just so much easier.

That's why I suggested the BRT before. It's a foot in the door and prevents the trauma of extra worry. But that didn't fly, so now we work with what we have. But.. of all the new people, you are in the group best prepared to work with these possibilities, so try not to worry. I know that you had already been educating yourself as far as diet and exercise, and would only had to alter that a bit regarding the iodine. This fact alone tells me your more likely to be holding that end of the bell curve.. those fast responders.

Do you have a regular family doctor that might fit in the picture better right now ? Someone that already knows YOU is the best bet.

Just never burn any bridges behind you. Getting fired by an endo for being a bad girl, could bite you in the hinny later. Doctors do have the right to dismiss a patient . It's only fair after all. Think what they must run up against.

I've never believed antibodies could cause symptoms, but I know some do. I know that when my levels were too high or too low, the thyroid swells in it's attempt to correct things and during that process the antibodies increase. Higher antibodies then affected my eyes more.. but the cause was my too low numbers. Sort of a chicken / egg thing I guess.

I'm definitely not trying to give medical advise or suggest anything. But in my own case (if you're curious), I did tweak my doses somewhat regularly and I think I'm doing okay. It is also important to note that I did communicate about my choice with my doctor.

After one month on 2.5mg I was going hypo, so two weeks or so before another blood test I started having some days where I'd only take 1.25. I have no idea if it's "good" for me, but it did help me to feel better, and when I had my blood test it came out just a few points over the lowest point in range.

My endo wanted to keep me on 2.5 thinking that it was a pretty good dose for me, but when I told her what I'd done, she agreed to let me try 1.25mg. I did start getting a few hyper symptoms for the first week or so, but they leveled out. Now I only have the occasional hand tremor (but I consume caffeine, so).

On some days if I feel a little worried, I take 2.5mg just in case-- but I always note which days I did so in my calendar. I was taking 2.5mg every two or three days, but now I only take 1.25 and I feel pretty good. Not sure where I am lab-wise, but I definitely happier and more stable than I did on 2.5mg.

When I ended the MMI, I did do 2.5 three times a week, with 1.25 four days a week,until I was doing 1.25 every day, then 3 times a week, then off,that could be done too.I went real slow but probably wasn't necessary. I'm on replacement now. I probably could have stopped long before I did. I was only started on 2.5 to begin with but my first doc kept me over dosed for awhile(my numbers got too low on this dose too) He even tried to put me on 5 mgs cause my tsh went low about 6 months after starting meds, I had actually stopped taking them for about 3 weeks because of joint pain but it was just a hypo symptom that I didn't realize. I figured out what was happening after joining these kind of boards. I got another doctor and she let me do the 1.25. I could have dropped down to 1.25 much sooner than I did though, for sure. Do you have antibodies for Hashi's too?

I have to answer I don't know as there was something in my blood that prohibited a valid test - some type of interference but after questioning the lab and they calling to the outsourced lab - I never got a definitive answer.