Don't want my Endo to take away my T3 meds

[DebE13]

What would be the best angle to take with my endo about my most recent labs? I had my total thyroidectomy in Sept. 2012 and have been adjusting meds ever since. I was finally allowed to try liothyronine (T3) but was told if my endo wasn't comfortable with my TSH numbers he may reconsider. I wanted to up the T3 meds in March but he wanted to let my body "rest" and work things out with my new dose. I didn't argue since it wouldn't have gotten me anywhere. I had my labs done again last week and TSH has taken a jump again. I'm dreading the follow up phone call because I don't know what he will want to do. He admitted I may be a poor converter so I'm torn on what to suggest. I always feel more comfortable giving him my own game plan instead of waiting for what he thinks but I don't know what to ask for. I only know 5 MCG of T3 is not enough. I want to add an afternoon dose.

I am very dependable when it comes to my meds. I take the levothyroxine at 9 PM every night or at least two hours after eating if I have a late meal. I take my T3 meds first thing in the morning when I wake up and usually eat an hour after taking them before I go to work. I have my labs drawn at 7:15 AM each time I go and do not take my morning dose until after I have the blood draw. My TSH is not being suppressed due to the cancer because of the totally encapsulated mircro carcimomas. There was no lymph node involvement and I did not have RAI. My thryrogl. tumor marker/anti TG is at <0.2 ng/mL (yay me).

I currently take:

Levothyroxine: Monday - Saturday 100 mcg and Sunday 175 mcg on Sunday. Due to the manufacturer I can only get the kind I need in 50 mcg tablets- no dyes no questionable fillers.

Liothyronine: 5 mcg/day

My recent labs:

TSH
date 6/13- 3.83 uIU/mL
3/4- 2.69
1/3- 1.85

Free T4
6/13- 1.1 ng/dL
3/4- 1.1
1/3- 1.4

Free T3
not sure if they weren't taken or not in yet. ??
3/4- 2.2
1/3- 2.1

I will need to ask why there was no T3 labs but the rest have me concerned that he may want to make a change.

I am feeling much better than a few months ago but am still dragging and still nap (not like me). I have more of a spring in my step so I am on the right path but tend to fizzle in the PM and usually hits me like a ton of bricks. It's sudden- like a light switch. I have more good days than bad days but feel the need to shake the tired feeling that's dragging me down.

Any suggestions

[tex]

I will need to ask why there was no T3 labs but the rest have me concerned that he may want to make a change.

That missing Free T3 result is critical to this decision.

Your increasing TSH result means that you clearly need more of either T4 or T3. Since your Free T4 seems to be holding relatively constant, that seems to suggest that increasing the dosage of either one would help to bring the TSH down to a better level. But if your Free T3 result is already above range, then that would be a disincentive for increasing your T3 supplement (or even continuing it at the present dosage level).

On the other hand, if your Free T3 result is holding steady, or decreasing, then you have a reason for increasing your T3 dosage.

At least that's the way I see it. If your endo forgot to order a Free T3 test, then either he isn't taking care of business (that's a bad oversight), or he doesn't know how to properly treat hypothyroidism.

If you were taking enough thyroid hormone, you probably wouldn't be running out of steam most afternoons.

Tex

[DebE13]

Well that is just plain disappointing. The results list 2.1 pg/mL to 4.1 pg/mL to be the normal range for Free T3 so I am still at the low end. Of course, this is the norm for people with a thyroid and I have none. However, these are the numbers my endo uses so I'm stumped where I fit in. I guess at this point I need to ask why it was missed and what he plans to suggest. My follow up visit isn't until September so that's too long to wait. I have more energy now than I have in years so I'm not complaining because it feels good find myself after so long BUT now that I feel good, I want to feel GREAT and I'm close to being satisfied.

I know I won't ever be the same but considering the MC and the thyroid issues, which will be lifelong, I'm doing pretty darn good.

Although, ask again in an hour and if I've fizzled hard I will tell you a different story.


Doctors, gotta love them.

[tex]

Deb,

I'm not sure why you say that is disappointing, but if your Free T3 is in the lower part of the so-called "normal" range (or below), then you need more T3 supplement. "Normal" ranges apply to people who still have normal thyroid function. Anyone who is hypothyroid should be taking enough supplement to push their Free T3 and Free T4 results into the upper part of the "normal" range, certainly above the mid-point. And they should be taking enough total hormone supplement to push their TSH result into the lower part of the so-called "normal" range, preferably around 1.0.

If your doctor will allow you to do that, you will feel normal, all the time.

Tex

[DebE13]

I know you are right but I am overly paranoid about my endo's reaction to rising TSH. I should give him more credit since he has allowed me to try the combination meds, just not as quickly as I had wanted. He wasn't eager to do it and made it clear it would not continue if he didn't like my TSH numbers. I am simply horrified of the idea of ever feeling that bad ever again. I told him I wanted to see myself in the upper ranges of the scale and that's when he brought up the TSH and "do no harm."

It serves as a good reminder that just like MC, there are no overnight changes and it takes time. My best step right now will be to initiate the phone call to his office.

[Pat]

Deb,

Here is an article from the Magnesium Advocacy Group:

http://gotmag.org/magnesium-supports-th ... s-thyroid/

Pat

[DebE13]

Good article Pat, thanks for sharing.

[DebE13]

It was a relief that the Free T3 wasn't missed but just not posted to my account when I had looked at the numbers. My 6/13 labs showed it dropped to 2 pg/mL. I am disappointed the nurse called back and said he wants to make no changes because everything is in the normal range. The range given for the Free T3 is 2.1 to 4.1. Wouldn't you think, given my history, they would address that?

I told the nurse I would like to try an afternoon dose also since I still take naps and am feeling drained. Until this past couple of years I NEVER took a nap in my life, even if I tried. Of course, it was late in the day when she called and he is out today so I have to wait. Hopefully there will be no issues with my request.

[tex]

Hi Deb,

Am I blind, or are both your nurse and your doctor math-challenged? I read that result as "2", as in "2.0", and back when I used to remember how to use mathematics, 2.0 was not in the range of 2.1–4.1. Silly me — I would have interpreted a result of "2.0" to be below range, meaning that you clearly need more T3 supplement. Apparently the rules of mathematics have been changed since I went to school, and as usual, no one even bothered to tell me about it.

I reckon I wasted my time and money getting an engineering degree, because I don't even understand how 2.0 falls within the range of 2.1–4.1.



Tex

[DebE13]

Yep, this is total BS The nurse just called me back and said no changes. He gave no reason just No. But I should keep a journal of how I m feeling to review in september at my next appointment. And sometimes when we write things down we find that they aren't as bad we originally thought! Really? Oh yeah, but then wished me a good summer.

I don't have any high hopes to find a better endo because i already looked. They seem to be made out of the same mold where I'm at. I think it was just easier to say no and get on with that day of vacation instead of figuring out the math for a new dose. I should have never mentioned that I am feeling better.