I agree T3 needs to be taken more often and consistently, because it has a fairly short half life.

But this seems so odd, that given they are writing a scrip for T3, why do they not run a correct FT3 lab ?

With only the TT3, you may as well not bother with a blood test for what you doing now. Yes, FT3 is more expensive than a TT3, and sometimes it's wasteful, adding no useful information, but times like this it is the only test that's going to be relevant.

Thank you for your reply, Pam, sorry I'm slow getting back to this. I tend to agree with you, even though I understand why I was tested for the TT3.

Basically, in May I got an appointment with a new endocrinologist in Denver (out of state, and an 8 hour drive away). Why? because I wasn't happy with everything about my TSH worshiping Endo #2 whose office is about 10 minutes away. I chose the one at UCH in Denver because she was listed as specializing in thyroid, female problems, and the pituitary, while not seeing diabetic patients. (While there, I found out she did see diabetic patients, but at a different office.)

She was good for at least two reasons: 1- She explained enough for me to realize that I have both HT and GD auto-antibodies. 2- Endo #2 rejected me as his patient because I went elsewhere for a second opinion. 3- Being so far away, Endo #3 agreed to see me just once a year with having my PCP here do the labwork according to her suggestions. (That is both good and bad.) She insisted that the FT3 was "a poor assay" and that I should get the TT3 test instead. Still, it opened up the way for my PCP to treat me at all, which he wouldn't have done if I were still a patient of the local Endo, and if #3 hadn't sent me an email explaining things to me and telling me to show it to my PCP. #3's recommendation was that I receive no treatment at the time, but be tested every 3 to 4 months and see her in a year unless "my symptoms or lab results" indicate I need to see her sooner.

Here is the link to what I wrote just after my trip to Denver:
http://www.dailystrength.org/c/Graves_Disease/forum/16539052-endocrinologist-visit-denver

My PCP agreed with me when I told him I feel like I am walking a tightrope and I just need the means to do it. We discussed treatment options and I wanted the Cytomel because it is fast acting and fast leaving, which I felt I needed to have if my two opposing auto-antibodies go out of balance one way or the other.

I thought that my blood pressure and heart rate were better indicators of where I am at with my meds because I can get the results daily.

It turns out that I really did need the doctor's guidance in being more consistent with my meds, but I am having some trouble, now that I am taking the 1/4 pill per day. I will still finish out the week this way and see how I feel. If I feel alright, I should up my dose to 3/8 pill on Monday. If I feel like it is too much, I should decrease back to 1/8. So far, I haven't been doing very well this week.

Also, even though my labs say "total t3" it looks more like the results of the free T3 tests I had had before and not the total T3 test I had in Denver. For one thing, which I didn't post, it was measured in picograms not nanograms; the other thing is that my previous results of total T3 was: 83, range 60-181, units ng/dL.

The ranges you posted for TotalT3 do look like FreeT3 ranges. In fact, they are exactly the same as my lab's ranges for FreeT3.

I'm sure you can see that your level needs a LOT of help.

As always, PaminRemission has given you great advice.

I think you know I questioned you taking T3 as needed only because of my understanding about it's short half-life.

Yes, I can see taking an extra piece here and there.....maybe.

However, I have found that I feel best when taking the same dose every day....divided into an 8AM and a 2PM dose.

T3 can be a little tough to adjust to in the beginning but, I have found that the worst was over within a week.

The rest of my experiences after a dose adjustment were typical....an improvement in some symptoms, a worsening of others and/or the development of new ones.

Things evened out once my levels were optimized and I've been able to stay virtually free from symptoms with regular labs and appropriate dose adjustments.

I understand how things worked for you and I commend you for making the 8-hr trek to get things going in the right direction.

Maybe you can ultimately convince your GP to test your FreeT3 level just to "humor" you :)

For whatever it's worth, I can't picture you developing hyper symptoms by increasing your dose by 1/8 tab each week **if** you are taking 5mg tabs.

You'd ultimately wind up on the most common T3 starting dose: 5mcg.

(how the heck are you able to divide that tab into eighths? I had trouble splitting mine into quarters...I often wound up with crumbs)

I am indeed prescribed the 5 mcg tablet. I split it in quarters the normal way, but then I take the "fat quarter" and slice it with a sharp knife in half the other way to make a "thin quarter". It isn't always very accurate, but good enough for me.

I think there is a certain amount of inconsistency that my body responds to positively. That is one reason I take my pill only once a day, in the morning. When I was on MMI, it worked best for me to skip a day from time to time and really only take it at night. I couldn't tolerate being lower thyroid in the daytime at all.

When I started the L-T3 treatment I took 1/2 tablet and it was a huge jolt to my system. It was good in one way, because I felt like it lifted me up out of a deep, dark hole and into the world of the living, breathing normal people.

Even skipping the pill entirely for two weeks had me much better off than how I was before taking it at all. Maybe that is why I was confused about how to take it. My GP had just given me general guidelines: "Take 0-2 pills daily." "As needed" was implied.

Essentially, the Denver doctor refused to treat me at all because she was afraid that "even the smallest dose" (25 mcg L-T4) might be too much if I suddenly turn hyper due to the TSI. Knowing how she thought about it, made me err on the side of caution.

Even now, I hesitate to take too much until I see the next labs, but like you say, my GP also considers it to be obvious that I would need to take at least 5 mcg daily, but I could work up to it.

How I am and how I respond to the treatment is really only half the story. I am dismayed that I have had to suffer for 20, 30 or 65 years just because my TSH didn't come up with numbers that would clue the doctors in about my thyroid condition. The only thing that would make it all worth while, is if I can make a difference for the future treatment of thyroid sufferers. I have gone the traditional medical route instead of through naturopaths, etc. because I know that it is the only way to really get the attention of those with the power to change things, or to study the thyroid in a different and more effective way. My PCP is apparently progressive thinking--he would have prescribed Armour if I had wanted it--but he is an MD and is at least credible in the eyes of other doctors.

I don't suppose I am really hyper on the 1/4 pill a day now, but I have had problems staying asleep at night. Maybe you're right, cd, and I could try the 8 am and 2 pm dosing schedule with 1/8 each time to see if it helps.

In any case, thanks for your comments, they are all helpful.

Thanks for sharing more of your story, FernRL. I'm so very sorry that you suffered for so long :(

It sounds like you are maximizing your position - congratulations!

Just so you know, having trouble staying asleep is a classic hypo symptom called "interrupted sleep".

You probably remember us sharing a mantra on here: symptoms can be confusing, labs don't lie.

With an FT3 level that is below mid-range, it's virtually impossible to go hyper on a quarter of a 5mcg tab. In fact, I doubt you are at risk of going hyper on 5mcg.

If you are concerned, there's no reason why you couldn't take 2.5mcg daily for the full 6 wks. and see where your FT3 "lands".

Slow and steady always wins the race.

Dividing whatever dose of T3 we take makes sense based upon its short half-life.....it helps eliminate the possibility of hyper symptoms after a morning dose and can prevent an afternoon crash.

I had what I call a "T3 mentor". Even though my doctor Rx'd 5mcg once daily to start, my mentor suggested starting with 2.5mcg daily and dividing that into two doses as I've been doing.....and then to increase to the full 5mcg (divided into two doses) once I felt comfortable with what was going on.

I had some occasional bouts of irritability after starting the 2.5mcg but that was it. I was able to increase to 5mcg after a few days...and without incident.

Of course, we are all different but, taking replacement meds (and especially T3) is very different than taking ATD's.

I'm not surprised to hear that you decided to err on the side of caution as a result of the Denver doctor's comments. We get such contradictory information about thyroid treatment that it's hard to sort through everything.

I wish you the utmost success with this next step of your thyroid journey.

Please keep us posted.

Thank you for your responses.

I find it hard to get to the computer as often now that I have a life. :) But I'm really glad to read what you've said, too, and feel a part of the DS community.

So...at the end of August I was having trouble adjusting to the quarter pill dose.... I eventually decided not to up the dose or decrease it until I felt stable on it or had some distinct symptoms* telling me otherwise.

I just changed my dose yesterday, increasing it to 3/8 of a pill. Today, the same thing happened that happened last time the day after I increased the dose: I forgot to take any of my morning pills. I thought I had taken them and didn't realize otherwise until around 3:30 this afternoon. I have felt very good today, though.* Even now at 5:22 local time, I don't feel bad at all.*

*Maybe y'all could explain this mantra better, "Symptoms can be confusing, labs don't lie."

It's true, my symptoms now** are more confusing than they were when I was more distinctly hypo and had probably been hypo for many years, but labs are just a snapshot of what is going on: TSH could be rising or falling, FT3 particularly could have been totally different from one hour to the next. I know that TSH is not looked on as important here, but it is all-important to the doctors which makes it important to me. Also, personally, I think I feel better when my TSH is stimulating the hormone creation than when it is the TSI.

** Actually my symptoms are virtually completely gone, as far as I can tell--I'm even sleeping better now, all night long. The only thing that seems strange to me is forgetting to take the pills after increasing my dose. Maybe, the increase suppresses my TSH enough that I don't get the natural increase from my thyroid, and I get temporarily more hypo?

PS. I am scheduled for a fasting blood test on Monday the 23rd. I guess he will check my cholesterol again, also. (Another symptom.) I plan on staying with the 3/8 tablet until then--unless someone convinces me to do otherwise.