Oh crap! How long have you been on replacement? Before you had your TT did you feel better with your levels on the high end of your ranges? I am on Synthroid but I still have my thyroid so I did bounce around a bit from month to month...I'm just not sure its that way for people who have had a TT. There's lots of info on Graves Disease General Info...you can just copy it and take it in with you...if we have what you need. If we don't and you find something that backs up your case...please feel free to post it there. Big Hugs...Kathy

I've only been on the replacement for a month.
Yeah, Kathy, I think I did tend to feel better with my ft4 on the higher end. I remember posting to elaine when my ft4 was on the lower end and I wasn't feeling well and she said that it was probably too low for my body's needs. I'll look over in the general info and see if I see anything. Thanks!

jjbrookes posted this just the other day...great stuff

http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/11115974

yeah I read those, they were good, but I know his response is going to be that these deal with those who still have a thyroid and use ATDs. I'm going to try to find something specific to post-tt since he said the antibodies won't affect me now that I don't have a thyroid.

Not the first endo to suddenly loose his mind post surgery.But as long as you understand , this will all work out okay. But it will most likely take some effort, and eventually meeting new doctors. Too soon to know that though. He really doesn't know that only some of our antibodies are made in the gland ? They're made in B cells specifically, and are active for about three months from being produced.

I have this reply for Elaine that , while not directed to post surgery, is a great help in understanding Graves' antibodies.
http://elaine-moore.com.dnnmax.com/QA/tabid/57/forumid/6/threadid/2795/scope/posts/Default.aspx

Hi SahmLaura,
He might have just been trying to say that the autoantibodies can no longer make you hyper, so if your Ft4 and FT3 are too high, its because of the synthroid. It sounds like there may have just been a miscommunication here. I'm comforted that he looks at your Ft3 and Ft4, and it does look like you might be on the high end of the ranges with those levels, and the reduction from 112 to 100 is not too severe, so I wouldn't worry too much just yet.
Big hugs!!
Hannah

Hi sahmLaura,

Don't let this discourage you. Your labs look good. Feeling cold and dry skin are symptoms of hypo, however it may take a little while for the synthroid to do it's thing with that. Most important is how you feel. Brokken's study as well as Gelwane's regarding a low or suppressed TSH while the Free T3 & Free T4 are in range apply to all of us with grave disease antibodies regardless of our treatment choices including ATD's, Radioactive Iodine or TT.

I had RAI 2 1/2 years ago and I still have antibodies, hence my suppressed TSH. My Free T's are in the upper part of the range and I finally feel well.

It's too bad that we have to fight for adequate replacement. I've had my share of battles with these doc's over it. It's a very real thing after TT and RAI. Keep on keepin' on...things will work out :)

Hit "Add" too fast.

Some post surgery patients have had to resort to demanding their TSI and TBII antibody tests be run, to have proof for a lower TSH. Don't be one that waits 3 or 4 years to get there, if it needs to be done.

I'm concerned about your plan to have labs in only 4 weeks. Adding hormone replacement is a much slower process than our ATDs. Labs at 6 weeks show a trend, and labs at 8 weeks are more accurate. The body still takes longer to stabilize and start healing, once a good level is found.

Her's is the Synthroid site.. click on the PDF file for full package insert. Listed are times between labs, timing of pills and types of foods, and possible drug interactions, Same info for all brands, I just like this one.

Testing too soon can lead to a roller coaster affect, and potential antibody increase.

If those were my labs, I would expect the small decrease to help symptom wise. My FT4 would come down a tad, and in return my FT3 would come up to balance nicely. Something to keep in mind as you move forward.

When Elaine said your FT4 might be too low.. what were your lab results then?

http://www.synthroid.com/

It was back in 2009. My FT4 in July 09 was .62 and in December 09 it was .74 with a reference range of .58 to 1.64

I hope it was just a miscommunication, Hannah!

He said we can either go down to 88 and come back up to 100 if we need to, or go down to 100 and maybe go down to 88 if we need to. I opted to just go down to 100. Per the package insert my weight equates to a dose of about 92, so I think I like the 100 dose better than the 88!

I just got really worried when he mentioned the non existent tsh and about not worrying about the antibodies now that I don't have a thyroid. With all of the horror stories you read about hypothyroidism and people having to beg for a sufficient dose of replacement it scares me. It was one of the main reasons I was scared about having a TT! But, I had asked him about dosing and about armour (which he said I could try if the synthroid didn't work and that he has a few patients on it) so I thought I was good. I have an appt with my OB on monday because we want to start TTC once levels are good, so she will definitely be open to testing the antibodies for me, so atleast I won't have to fight to see where they stand. And then if I have to maybe I can take those levels in to him if I need to.

So I wonder if I should've remained on the 112 for another few weeks before doing the first labs, Pam?

I guess my only option is to take the 100 and relab in 4 weeks? He gave me a sample (4 weeks worth) of the 100, but said I could finish up my 112 by skipping a dose on saturday. what do you think about that?

Hey! I don't know too much about replacement after a TT but with a FT4 of 2.16 where it was 70 something, that's a BIG difference! That's why you felt hypo back then, anyone would. I think he sounds pretty good as far as endos go and the reduction isn't much but like Pam said, labbing every 4-6 weeks isn't necessary on Synthroid, 6-8 weeks would be better to see where you are then. I don't like skipping days, at least on the Methimazole, it didn't really work out good for me.Some people may vary the dose of Synthroid but skipping days, I don't know.

Don't forget, too, being cold and having dry skin are among the top symptoms of "winter!"

What a great group we have here!

Laura,
Sounds good..I'll explain more in a minute, but first I want to post the half-life of our MMI, PTU, and T4 search results I found. Looked because of your dose question, and I need to refresh my memory. It's been awhile.

Half life of MMI search result= 4 to 6 hours
http://www.google.com/search?q=+MMI+%2B+half+life&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

Bonus=
Carbimazole is rapidly converted to MMI in serum: 10 mg of carbimazole yields about 6 mg MMI
EXCELLENT reference
Werner & Ingbar's the thyroid: a fundamental and clinical text
By Sidney C. Werner, Sidney H. Ingbar, Lewis E. Braverman,
http://books.google.com/books?id=HoOm6PuNcwwC&pg=PA668&lpg=PA668&dq=MMI+%2B+half+life&source=bl&ots=lWfwQVYCFO&sig=uHN1f7uzmmebCpj_LqUUcJXmvH0&hl=en&ei=VRQMTYDyOIq6sQPfjP2ECw&sa=X&oi=book_result&ct=result&resnum=2&ved=0CBoQ6AEwAQ#v=onepage&q=MMI%20%2B%20half%20life&f=false

Half life of PTU= 75 minutes
http://www.google.com/search?q=PTU+%2B+half+life&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a
This was a funny search result and informative . Looks to see who has the answer correct...took the time to google before being an on-line expert.(cough, cough )

Encyclopedia of Molecular Pharmacology, Volume 1
By Stefan Offermanns, Walter Rosenthal
http://books.google.com/books?id=iwwo5gx8aX8C&pg=PA190&lpg=PA190&dq=PTU+%2B+half+life&source=bl&ots=Uu6QFih81g&sig=W_T3SswKRFVlrqtTrX6BPEzBDQM&hl=en&ei=tRQMTbqfG4XAsAPUw6jzCg&sa=X&oi=book_result&ct=result&resnum=10&ved=0CGYQ6AEwCQ#v=onepage&q=PTU%20%2B%20half%20life&f=false
Also includes more on both ATDs for those interested.

Synthroid half life = 7 days
http://www.google.com/search?q=synthroid+%2B+half+life&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a


Psst.. Linda,
Look under the PTU link with the multitude of erroneous answers, and notice our old buddy John /ithyroid) was perfect as expected. He may have had some of the more interesting ideas, but he was consistent in accurate research sources.

So Laura, you can see why it is common to take a variation of Synthroid strengths in one week, to come up with a precise dose per week. It really shouldn't be problem.

Hannahbee,
You may be right. What a great observation. I felt better immediately.
I've been meaning to tell you how valuable your diet posts are. Love them.

jjbrooks,
Hey, if I'm ever invited to a street fight, I want you by my side. We would win too! LOL

Laura,

Thanks so much for fleshing out the story. As you know, I'm new around here so lack the background of all you have on your plate. I'm seeing this in a whole different light now. And I apologize if I added to your concerns .

First labs following a TT make perfect sense at 4 weeks, to see the trend. And in your case it worked out to prevent you going higher in the next few weeks. so that parts great.

You've said some very positive things about this endo in the second post. So I'm going to guess he has chosen the faster than average second labs due to both the smaller decrease picked, AND the fact that you are eager to TTC. Much better to watch so close in case of an accident in the BC department. You really don't want to be hyper when conceiving. With the risk of miscarriage that goes with being too hyper..imagine the emotional toll that would take at this point.
Of course hypo is horrid too, with the risk of growth problems, mental retardation or learning disabilities.

Yes, easy to get antibody testing when wanting to TTC. Great news there. And if your worried about neo-natal Graves', I can tell you the only moms I've seen have those problems were either undiagnosed with high antibodies at the time, or post RAI, with high antibodies.
I've known lots of new moms in our groups over the years, and what fun that is. Both those on ATDs and post surgery have all done very, very well. Yeah for new little ones !!!

Dose? If it were me, I would not be concerned at all about this nice gentle drop. Sounds good.
Which pills.. personally I would look at the expiration dates and pick the oldest now. Keep your stock rotated. :)

Thanks, Pam! I am very happy that you joined our group! I just think that doctors don't often know how well educated and savvy patients are these days. The internet has changed everything, and has made medical information available to people that would normally not have been available unless people had the opportunity to visit their local college library. So, he probably wasn't realizing how advanced SahmLaura is in the understanding of Graves and autoimmunity. He may also not know about the TSH-autoantibody correlation, or he may, but just didn't think that Sahm would. I think that the moderate decrease is comforting, and I think it speaks well of him. I think we have a much better endo here for Sahm, than JLBrooks encountered. It may very well be that the 100mcg of synthroid might be better.
Big hugs,
Hannah