You guys are awesome- thank you!

@cd- thanks for your words and recommendations- I appreciate them greatly. I will certainly be mindful of any information I get and to ask further questions if I am confused. I'm getting my reproductive endo involved because he is the one watching out for my embryos with me. He may have more information about proper levels to aid in a successful pregnancy. Plus, I really trust him. He is exactly what a doctor should be. Do you think I need replacement hormone at this time? I know my levels are off but I think I maybe should wait until I'm off MMI to see if my numbers jump back. Or will they still just stay at where I was before treatment?
@rain- how does one order blood tests on their own online??? I assume that isn't covered by insurance- what is the cost of doing that? I have never heard of that before. I really want an ultrasound- I'll hunt someone down to finally give me one...
@Kathy- please know I love your kind words each time you post to me. I hope I'm near remission! It's so exciting to think that there is light at the end of this tunnel- I hope so much for this to be in remission. As an infertility patient- once baby is on the mind it's so hard to stop thinking about it. I just hope I can get well for my little boy and to hopefully get pregnant once I'm feeling good and given a bit of rest. I, too, remember someone posting about dissolving their dose in water... I'll search around the site...
You all are so awesome!!! Thank you so much for your help and guidance!!!

Colleen

Without a doubt, I think you need replacement hormone. In fact, based upon your labs, you've needed it all along (vs. anti-thyroid drugs)

My FT4 was "better" (higher in the range) when I started replacement and my TSH was even lower than yours (completely suppressed).

Endo #3 wanted me to go back on ATD's when she saw my suppressed TSH. I knew that was wrong.

Thankfully, I partnered with my current doctor shortly thereafter and she was incredulous about the shoddy treatment I had received.

Thyroid status is always determined by the FreeT4 and FreeT3 levels.

Yours were hypo when you started ATD's and became even more hypo afterwards.

It's clear that your doctor was confused by your TSH.

You obviously have Graves' blocking antibodies that are overriding the effects of the TSI (stimulating antibodies) and making you hypo. This happens and is exactly what's going on with me.

A successful pregnancy requires a FreeT4 level near the high end of the range and I sure hope your reproductive endo knows this.

The only way to get your FreeT4 level to increase is to take thyroid hormone replacement.

You can order your own lab tests here http://www.healthcheckusa.com/Thyroid-Panel-II-T4-Free-T3-Free-with-TSH/46938/ $85 for TSH, FT3, FT4 there are only a few states that disallow this and you can always hop in the car and go over state lines if you need to!

Thanks for your insight, CD. Oh man, I can't even get an endo to give me an ultrasound, I just have no idea how I can have them get me some replacement hormone... What a mess... I'm a bit nervous- my reproductive endo is great but I'm unsure of how much he knows in this area and I'm wondering if he would just follow what my regular endo would suggest. I have been reading up on some articles and one of the authors is a doctor at my clinic- he seems to have had experience with hormonal interferences to fertility and also says he has experience with thyroid diseases- bridge the graves and infertility together- which would be the ultimate answer for me. I'll try to get to the bottom of it- I'll ask around to see if he could possibly help me out- maybe I do know he is currently focusing on adrenal diseases... Just maybe he could help but then again, I'm definitely not holding my breath. Again, I'll go to Elaine and see what she says. I didn't get the opportunity to do so yesterday, so hopefully today I can contact her. I've also thought about seeing my regular doctor again- she was no help before and I have a suspicion she is getting burnt out. Then again, that probably is useless... I'll keep thinking... Any suggestions???
@Rain- thanks for the site, that's awesome. Nice to have that option! Talked it over with my husband and said that we could do that. Do they test the Trab and TSI, too???

Colleen

I suggest to you what I suggest on hypo forums - find a doctor that prescribes Armour.

Armour is a thyroid hormone replacement med that, when taken in optimal doses, suppresses TSH. This fact is stated on the treatment section of their website.

A logical conclusion is that a doctor who prescribes Armour understands that suppressed TSH alone doesn't tell much.

Compounding pharmacists often make preparations with Armour.

People have had success by calling compounding pharmacists, telling them they are new to the area, take Armour and are looking for a doctor who prescribes it.

It's best to talk directly to the pharmacist vs. the counter help.

It seems that the counter help often gets confused and has privacy concerns or thinks people are looking for doctor recommendations which they can't give.

I know how frustrating it is to try to find a new doctor. I made made appointments one month apart with a succession of potential doctors.

My intention was to get labs with each one and see what their dosing recommendation was. If I agreed with it, great. If not, I planned on figuring out my own dose and move onto the next one.

I would tell the next doctor about the dose I had been taking (I "had" been taking it - right? ;)

The 3rd potential doctor wound up being Dr. Right and I'm coming up on 4 years under her care.

I'm still the one to suggest every dose adjustment (I take replacement now) but, I feel awesome most of the time.....and my TSH has been suppressed the entire time.

Thanks again- I'll be taking your advice. Let you know how it goes. Fingers crossed...

Still no luck hunting down a doctor that prescribes armour... I'll continue looking...

Maybe go down to just 1.25 instead. That's what I did at the end. Then I went to 1.25 three times a week, then off. If you go down to 1.25 and still have levels like this, then you are probably in remission or you have gone too hypo for you and eventually will even need replacement med like some of us.

The girls are right though, I didn't realize you started at a lowish FT4. It was never hyper at all.

Hi Colleen,

I'm playing catch up here... so it was a speed read through this thread for right now. The high points to touched on..that I noticed.

If you throw a handful of endos up against the wall, one will stick.

If you throw a handful of reproductive endo up against the wall, two will stick.

What they do know is that a woman's thyroid levels change rapidly ( this is a good thing) during each phase of pregnancy. ..the body adjusts for the babies current needs.

So comes in the surgery or ATDs for pregnant moms right ? ( I know..your case if different, but stay with me. It's the best way I know to explain.

After surgery the newly pregnant mom needs rapid dose changes to try to more closely intimate nature. Unfortunately changes using thyroid hormone in a pill take 6 to 8 weeks.

A new mom on ATDs has the small risk of problems with the drug itself, BUT she can shift her thyroid levels quickly. A big plus..since low thyroid levels in the first 11 weeks while the fetus has no thyroid gland, causes mental retardation, cretinism, or a variety of learning disabilities. Same with potential physical issues.

I understand your goal and it's perfectly reasonable. .. but it's important to understand how bad hypo levels can be. Not all reproductive endos hit the mark, but the odds are better.

Hair loss....

It has a delayed starting time and a delay in stopping, so don't think it's due to your current levels. If I'm remembering my hair loss was about a month behind my side to hypo..increased the longer I was there..and the standard hair loss sites explain the three month cycle expected to finish shedding and new hair to start.

Antibody tests,

All labs need a reason to be run, curiosity is not one.
Labs guide one to potential treatment changes. Since this last endo was not planning on changing your treatment, he could not turn in antibody testing costs to the insurance company.

Most insurance companies cover antibody testing to confirm diagnosis, then when wanting to confirm remission. A few cover yearly monitoring.

I agree your getting to a point where it will be useful info.

The endo I wanted you to meet would have said.. " Whoa ! Why did they start you on ATDS ? You have never been hyper !"

But then he would have listened to your whole story and suggested adding a small amount of replacement hormone to take with your MMI, in order to be able to lower your antibodies and prepare for pregnancy. The advantage there is partly strategy. Depending on how your antibodies might shift, due to the over medication... you would more easily be able to adjust whichever hypo/hyper way you were to swing in the next months.

Well, I know I'm getting tired, so I hope that all came out okay. Just wanted to let you know how proud I am of you. Your really doing great. Your catching on quickly. (((hugs)))

Pam- you are just plain awesome. Please know with all of my heart how much I appreciate you walking me through all of this...

So, combining the information from many of you here, as well as Elaine... I'm thinking I may stop taking my MMI. It's so tough, I'm typically such a compliant patient and it's a bit scary and intimidating to take the leap. However, I'm also not stupid and will definitely advocate for myself...

CD- since you are also on the hypo site, do you see any point for me to post my circumstances on that site, too? Do you think there is someone like me there???

I will be letting my endo know when I stop. I'm also going to again request that ultrasound- my neck and throat are flared up today and I want it looked at. Should I expect him to order labs sooner than 6 weeks?

Oh your so kind Colleen.

I have another reference for you. This one showing a little bit about what I was trying to explain about pregnancy and how thyroid levels move naturally. This is not extensive, and really deals more with non-Graves'.. but it is enough, combined with what your learning about Graves' and our mischievous TSH, you can see why one needs to be aware. Where I've seen things go off track is with newly pregnant moms and doctors that get all freaked out when the TSH drops ( as it should) and the doctor thinks the mom is going hyper. oh so wrong.

http://www.thyroidresearchjournal.com/content/pdf/1756-6614-6-2.pdf

As far as stopping the MMI.

I would want to know what the time spent hypo has done to your antibodies. I noticed the FT4 has gone up a bit from the starting FT4 with no MMI..and now with MMI it's up.
Not much, but it shows this is either your body returning to your normal.. thus the small dose is not holding you as far down....

Or the antibodies are switching around.. what if this dud has caused your TSI to climb. In that case you would maybe need a tiny dose to hold it down.

Biggest problem is you never had a chance to find the optimal place within the reference range.. where you feel best. They started with you too low, then forced you lower.

I'm pretty sure if you did go hyper, you would notice and could start on a low dose..so there's that.

Hey, I'm not a doctor, and what I would do is going to be different than what others would do. What I try to do here is help you understand so you can make the best choices for you. Then if it goes well or if it was a slight error.. no biggie. You know what, and why. Then you adjust.

I'm pretty sure ALL of us have made a few missteps along the way, I sure did. It goes with the territory. But not changing when things are going wrong is obviously a whole different deal.

One constant we have all agreed on is to not change things abruptly. The shock to the system can upset the ol' apple cart.

Oh, I just remembered... in the link I just gave you it says Block and Replace is NOT recommended for pregnant moms on ATDs.

What they are talking about is the standard Block and Replace Therapy ( BRT). The patient takes about 30 mg MMI or 300 mg PTU, plus enough T4 replacement hormone to bring their levels up to normal for them. This allows the higher dose of ATD to work with the antibodies...then a few years later ( used to be 4 to 6 years) the patient is weaned off of the ATD while staying on the T4 for the following about 4 years. During this T4 time, the thyroid stays sleeping and the T4 keeps the patient normal.

The original studies showed remission was a given. But.. studies were not duplicated so endos toss this out the window. Trouble is, in the original study they chose patients that were willing to commit to the protocol. You know.. get labs.. remember to take the pills.
The attempt to duplicate the study done here once again puts the patient group we have in studies ( those welfare patients with limited education and lack of security ) are the group most likely to fail ATDs. To be successful you need to understand why the meds need to be taken.. you need to understand if you don't feel good, go get labs. You need access to lab work and time off the job to get there, and transportation. You need healthy food. You need to be out of a domestic violence situation. The list goes on.

USA studies given the subjects used will always show poor results. It's our health care as a profit making business that makes the difference.

Well, I've gone on again.
My point was the type of adding a small dose of T4 to stabilize you, in addition to the small amount of MMI, is not the same BRT they are speaking of in that link. ( if that were to become an option at some time in the future )

Pam, you are so right - when I brought a copy of the Japanese study about the block and replace and remission my first endo immediately dismissed it while walking out the door saying failures to replicate it made it irrelevant. What could I say to her then? Any time I told her of things I learned on the internet I could see her writing me off further and further as some soft-headed internet lovin' fool. Gah!