Sorry to hear of your fatigue.....your labs explain why.

I suspect that you have Graves' blocking antibodies interfering with your TSH. I'm not sure if you are familiar with them but, just like TSI, they suppress TSH.

However, there's a significant difference between the blocking antibodies (TBII) and TSI.

As you know, TSI stimulates the thyroid to produce hormone and suppresses TSH.

Well, TBII blocks the production of thyroid hormone and also suppresses TSH.

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

*Or*, the ever-powerful TBII can over-ride the effects of TSI and make the patient hypo (with suppressed TSH). That's where I'm at right now.

No matter what, your labs indicate the need to go off MMI or add in some T4 thyroid hormone replacement (levothyroxine).

Taking an anti-thyroid drug along with levothyroxine is called "Block and Replace Therapy".

I could never find a doctor willing to do this for me so, I was forced to go off MMI when my labs looked like yours and I was taking 1.25mg.

Please remember that being hypo can cause an increase in antibody production....

BTW, the physical stress of the trip stands a chance of lowering your FT3 level and then, in turn, your FT4 level.....our bodies use more hormone when we get more exercise.

Cd,
Thank you - I didn't realize the exercise can lower the levels. I'm not sure which antibody test Dr ordered it wasn't TSI so will post when I get that information. I'm feeling like I probably should go off the MMI and see what happens - I've been playing with 1.25 and .625 for several months and yes, I feel what my levels reflect. I am better at the 1.3 FT4 level. Would you continue with the Selenium supplement? This Dr isn't interested in block and replace so I think I am in the same boat you were - it will be go off and then see what happens. If levels stay low after I am off the MMI then possibly he will add T4 but I doubt it. Ah the never ending cycle.
The past couple of days I've been feeling like my thyroid might be enlarged which it normally isn't and that would also go nicely with the dropped levels. I am dropping to the .625 per day and see if I can feel better. How would you suggest I withdraw completely - over a few weeks, wait until after the trip, etc? Sorry, I just so appreciate the help.

Cindee

I know Elaine Moore recommends taking 1.25 every other day for a couple/few weeks then every third day for about the same time before going off meds.

I'm sure you realize that going down to .625mg/day is the same as 1.25mcg every other day.

I honestly don't think you need to do more than that because you are at risk of going further hypo which can increase antibody production.

You are and I was in a catch-22.....all because of our clueless doctors (sigh).

I suggest paying very close attention to your body (now more so than ever)

If you feel your throat getting any tighter and/or have difficulty swallowing, I think you might consider going off MMI completely.

I also suggest that you become very familiar with all the possible hypo symptoms and, if you develop more, also consider going off MMI completely.

This site has a very comprehensive list:

http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/

At this point, I'd consider a TSI level for informational purposes only. If anything, I'd want a TBII test as well. (thyrotropin binding inhibiting immunoglobulin). Not sure what lab you use but, LabCorp doesn't offer it - they only offer TRab which is marginally useful (one can only guess what the TBII level might be when interpreted with the TSI level).

I often wonder if me being overmedicated with MMI for so long is what caused my current hypothyroidism. I don't want to see that happen to you.

I think you should most definitely continue with the selenium....it helps to lower antibodies and can also help the FreeT3 level (yours is very low).

Best of luck to you moving forward and hope you have an awesome trip!

Thanks cd. I just posted a question about the antibody tests under the topic Confused. Dr ordered a test I have heard of but am not sure what exactly it tests. Would you go off before the trip or wait until after? I've flirted with hypo symptoms since the start of taking MMI - within 2 weeks I was having hypo symptoms and I've fought ever since to get the levels up. I told Dr I can give him a TSH reading if that is what he is after - just increase the MMI - I've got the history to prove it but that isn't what we're after a med induced TSH - we are after healing... total remission because it's where my body is. I honestly feel like it's time to come off - am I afraid - yeah just a little bit. I guess it is always possible to have it come back.
Thanks for the help and advice.
Cindee

I think you should trust your gut, Cindeeh.

I won't deny that I think it's important that you feel your absolute best during your trip and feeling hypo is certainly not your best :(

It's not like you are at risk of rebounding hyper overnight. Hyperthyroidism develops slowly.

Please realize that, no matter what your antibody levels, your labs indicate the need to go off meds or add in some thyroid hormone replacement.

I'm so sorry your doctor is failing you as mine did.

However, I am still here and doing very well.....I just have to take thyroid hormone replacement right now.

Thankfully, I partnered with a relatively thyroid-savvy doctor two months after I went off MMI. (when I say "relatively", it's because of a few reasons: She considered Block and Replace to be "complicated therapy" and wanted to refer me to an endo if that's what I wanted. She knows to ignore TSH but I've had to remind her at times.....and I had to identify my optimal levels and push her to maintain them. Having a doctor who works with you seems to be the best a thyroid patient can hope for.)

My current thyroid doctor (#5) is an internist referred to me by my post-RAI nail tech. I doubt she would have cared for me while I was on MMI but, she was comfortable monitoring me afterwards and told me she'd put me back on 1.25mg every other day if I started to go hyper....and that never happened.

I do suggest that, when you get back from your trip, you try to find a better doctor.....one who knows to ignore your TSH since that is crucial if you join the 20% of Graves' patients who go hypo after remission.

It's very difficult to get adequate doses of thyroid hormone replacement from a doctor who worships at the TSH altar - just read on the hypo forum here.

I have a few new doctor-find resources I'll gladly share...

This Dr is number 4 and has been working with me despite the tsh. Last time I had a decent tsh was Oct of last year at .55 and that was on 1.25 . He asked me what I wanted to do after he got these labs and I told him I'd wait for antibody results to decide but I wad going to reduce to .625 in the mean time to get to feeling better and he agreed. I will post antibody info when I get it since I will probably need help understanding if. This Dr is the best I've found to work with so far. :)) fingers crossed antibody test supports it.

Thanks so much!

I'm so excited to hear how close your trip is. What a dream vacation. :)

Dose ? It's not like we didn't see this coming. Same ol', same ol'.

Go with your gut and always have a back up plan.

Say for the trip, pack an emergency drug supply. So many times I got through weird 'is this hyper or hypo' moments just knowing I had 'drugs' in my pocket. By drugs I mean the ATD, beta blockers, my prescription strength lemon balm tincture, and even the Bach's Rescue Remedy ( a woo thing, but darn it, it worked for my cat, then it worked for me. LO).

After you have the antibody results, it might turn out to be a moment in time when a discussion about Partial Block and Replace could yield results, even though he said no earlier. Thing is, it is much easier to get a scrip for T4 at this point than once off the ATD and hypo with a low TSH. Thus strategy comes into play.

Your TSH is peeking out there. Did we do this before ?

Never mind my last ? I should have read your last response. oops.

It's the same old scenario - as long as you are in "range" somewhere on that reference, then you are fine and don't need T4 - he doesn't see my FT4 as low at all....:(( So unfortunately, I don't expect him to work with me on that. His response earlier was - no way you are hyper...
Kind of says it all doesn't it but at the moment, he's the best I have to work with and I can do what feels best. I didn't take anything last night or this morning - I figure if I'm going to go back to once a day of the .625, then I want it at night....need some energy during the day. It's really funny how it plays with what I want to eat - when I'm like this it is carbs, carbs and carbs and don't care if it's sweet or salty....of course the exercise could have a bit to do with that too.

I will definitely touch base after the trip. Pray I don't become bear food. We are going from west to east across Glacier National Park just below the Canadian border and then turn south along the Northern Highline Trail. I'm excited but nervous as we've never gone this distance or out for this length of time. Yep, I'm arming myself with goodies.... I can't take the beta blocker - knocks me off my feet no matter how low a dose I take so never did that part - toughed it out... but a high Heartrate for me was in the 70-80 range....:))

Thanks bunches and I will post the antibody information if I ever get it...yep I'm impatient...LOL