Thanks l felt awful this weekend couldn't get out if bed. Headaches eyes hurt ...

Brook,

This just popped up.. I didn't see it before, and apparently neither did people that could reply. Sorry about that.

I don't understand this Advice area. Sometimes I see it on the main page, and other times it's just gone. IF I have been in a conversation with someone in this Advise area.. I have to consciously click the main discussion, then return to discussion, then find the Advice area to click up above.

Any body else have this going on ?

If you want more views, I think asking questions in the Discussion area might be better in the future.

I'm going to do a separate reply for your question ... start with a fresh mind. LOL

So your labs from August show your FT4 very, very low. ( hypo)

Was this early in treatment ???? Because if so, the FT3 is only beginning to come down, and showing in the upper part of the range is normal. FT3 falls slower than FT4

Lowering your MMI dose because of the low FT4 was correct.. BUT it was not lowered near enough. So while your FT4 would have come up a little bit closer to mid range.. odds are that relief was brief, and you likely started dropping too low fairly soon.

With that lab being done on 8 - 15.. you should have had labs again by at least 9-15. Frequent labs when we re still adjusting the dose to get to "normal" really needs to be done. There's no reason to allow the patient to suffer and not be able to heal.

If you are more hypo now, that explains the eyes and all the headaches, aches and pains.

You say you have had "hyper " symptoms. You may be surprised when you see the new labs. If they are hypo as I guess.. the things your feeling are hypo symptoms for you. They overlap enough I think all of us guess wrong , especially when we're still learning exactly how our individual body reacts to thyroid levels .

When he writes the new prescription, just request that the pills be 5 mg. That way as you go forward, you will have the smallest ones made, and they are the best to be able to split in haves etc. as things improve.

How about also requesting the next labs be in one month. You can have lbs only, have a copy send directly to you, and the doctor can consult on the phone then if the dose need to be changed. That would prevent another mess lie what they have done to you right now.

You might want to ask for a referral to an Opthamologist for a base line exam and advice about your eyes. Endos are bet left to the thyroid part of things and are not as specialized as the Opthamologist.

Sorry your having such a hard time. This next dose reduction should make a big difference real soon, so hang in there.

Pam

I just hovered over your avatar and noticed your not brand new, but started meds spring of 2010.

So now I'm thinking when he tells you the next dose, it might be a good idea to ask him directly WHY he picked that dose. The answer may be reveling.

IF he is trying to get your TSH to show..then we will no why your having such a hard time.

IF he is trying to hold your FT3 down with MMI.. we will know why your having a hard time.

Just come back with his answer, and we can help sort it all out for you.

Pam:

Go to the left side of the page where you have Graves' Disease under the header My Support Groups. Click on it and it will bring up both Discussions and Advice sections together.

No need to click on the individual Discussions and Advice sections from up in the top.

{{{hugs}}} :-)

brook:

I think you're going too long between labs and not dosing properly if your doctor is going by the TSH. If that's the case, run and look for another doctor to dose you by the Free Ts, especially the FT4 for the MMI you take.

Take the steps to be proactive with your thyroid health. Read, read, research, research...

Good luck and {{{hugs}}}

Thanks so much for the ideas.
got my new labs today. Convinced my dr to see me every 2 months (tried for less but she said it wouldn't make a difference and the drugs need to take effect during 2 months). She is also moving me down from 15 mg to 10 mg (got then in 5 mg dosage so I will split them up, easier than splitting pills). the Dr. will try to get me as weened as low as possible, she still thinks I'll be on it forever but at least she is working with me and the office is only .5 mile away..

my new labs as of 11/11/2011 (note I think the labs were done somewhere else then usual since the ranges are different)
TSH 0.4 (0.4-4.5) Shooting for mid-range 2.45
T4 Free 1.2 (0.8-1.8) Shooting for mid-range 1.3
T3 Free 3.5 (2.3-4.2) Shooting for 3.25 mid-range

any suggestions on getting the TSH up and keeping Free T4 and Free T3 the same?

I am taking alot of vitamins
to name a few:
Selenium 200 mg
Glutamine 200 mg
Biotin 5000 mcg
Magnesium 1000 mg
Calcium 1000 mg
Fish Oil 1000 mg
1-A Day and Vision
Vitamin D 2000 (levels were low as of 5/25 36 should be 50)


ohh and I did ask which # she looks at and asked to always have all 3 checked. She said she only checks TSH when she is upping the meds and checks all 3 when she is lower the meds, not sure what all that is about, haven't read about that.,..

The doctor needs to check all three labs of FT3, FT4, and TSH regardless.

Remember that you have Graves' Disease which means the thyroid antibodies are affecting the TSH numbers. Unless the antibodies numbers come down, the TSH will stay low.

Check that your multi (the one a day) is free of Iodine. Also fish oil for some people can make them hypER. It does with me. Selenium should probably go down to 100 mg instead of 200 mcg. It will make the FT3 go up which is not what you want.

{{{hugs}}}

thanks so much!!! this group really does help me cpe and make me feel I can feel better. Like a second opinion. Family and friends are there but don't always understand ;) I will do that and adjust my vitamins and see my levels in 2 months . I told her I always want all 3 checked.

Great, it looks you will do fine.

{{{hugs}}} :-)

Oh my gosh Linda !

I have been doing this the most difficult way ALL this time. I thought the Advice and Discussion areas were sort of two different groups. I have link I follow to get here..it is the Discussion area..blue. The Advice area is separate and all red.
Now, thanks to your excellent understanding of what I was trying to say.. and instructions.. This is a whole new deal !

I made is so complicated. LOL !!!

Brook,

I am so relieved you stuck with us through this and your still here.

This:
****She said she only checks TSH when she is upping the meds and checks all 3 when she is lower the meds****

Is just so WRONG ! Might explain why this has been harder on you than it ever should be.

Here is a good start for you.
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/11115974

As long as we have Graves' antibodies telling the thyroid to produce hormone, the body wisely stops sending TSH to tell the gland to produce. It's a self protective mechanism. My TSH was variations of zero .01, .02, .001, .002 etc. for the first three years on my PTU, and luckily I found two doctors that both reassured me over and over, that my zero TSH was perfectly normal for my active Graves' disease.

If the patient is baddy over medicated ad thyroid hormones go way too low, the body then will send out a crisis TSH in an attempt to tell the gland to produce hormone and keep the body alive. Then as soon as the medical error is over and the overdose corrected, the TSH can slowly disappear again. That's a good thing in that circumstance.

As we heal our body and near remission, as the antibodies decrease, the brain recognizes the fact that it needs to now properly send out TSH, to tell the gland to produce. THIS is a wonderful TSH.

All this together is how we view a TSH result. We need to pattern leading up to the result, to start understanding why it reads as it does. Also in most circumstances, the TSH has a lag time of about 6 weeks.. this can vary depending on the reason, but is the most common thing you will see.

It sounds like once you are able to take more control of the steering wheel of this thing, your going to do much better.

When using ATDs we can test at two weeks from a dose change and see a solid trend. We need 4 weeks to see absolutely what that dose will do.

It is replacement thyroid hormone that takes two months.. not ATDs.

If you don't feel right at 3 or 4 weeks.. just call and request lab. You do not need a doctors appointment to do this.
For me.. after many trials on time between labs /dose chances.. it turned out as long as I got a FT4 each and every 4 weeks..on the nose, I was finally able to find my optimal levels and stay there.

Given the current symptoms and that 1.20.. it may be you need to be higher up on that. Time will tell.

You probably have this, but just in case...
http://www.elaine-moore.com/Home/tabid/36/Default.aspx

Thanks so much! I just ordered her Book on thyroid eye disease. I read her thyroid book and had good stuff just need to figure out the scientific stuff;)