# What is going on...numbers going down on the same dose!!



## Sabrina (Aug 30, 2016)

I've been on 100mcg Levothyroxine since September 2016. When I was taking 125mcg I ended up with hyperthyroid symptoms at four weeks.

*January 9, 2017*

*100mcg Levothyroxine since September 2016
Free T4 1.3 (range .8-1.8)
Free T3 2.5 (range 2.3-4.2)
TSH 2.51 (.55-4.78)*

*March 6, 2017*

*100mcg Levothyroxine since September 2016
Free T4 1.1 (range .8-1.8)
Free T3 2.3 (range 2.3-4.2)
TSH 1.99 (.55-4.78)*

Nothing has really changed except that I've lost about 10 pounds since the beginning of January, so I was expecting the numbers might have gone up a bit. This...this confuses the heck out of me!

I checked to make sure I'm on the same manufacturer of the generic and have been all along, which I have been.

What would cause the numbers to go down on the same dose? I am taking the medication the exact same way at the same time every day, haven't missed any yet.


----------



## joplin1975 (Jul 21, 2011)

Well, those are minor, minor, MINOR changes. One could argue they are essentially the same, which makes sense since you are on the same dose.

Are you doing more now that you lost the weight and have been on the meds longer?


----------



## Sabrina (Aug 30, 2016)

joplin1975 said:


> Well, those are minor, minor, MINOR changes. One could argue they are essentially the same, which makes sense since you are on the same dose.
> 
> Are you doing more now that you lost the weight and have been on the meds longer?


I would say that I am less sedentary, I do more work around the house - nothing heavy duty but I don't sit as much as I did before. Could that create the change? More activity uses more thyroid hormone making less "free" and available in the system?


----------



## fttfbass (Jan 8, 2014)

Sabrina said:


> More activity uses more thyroid hormone making less "free" and available in the system?


You are correct.


----------



## joplin1975 (Jul 21, 2011)

Yup, exactly.

I'm a runner. When I would undergo a dose increase, I would initially feel better and therefore run more. A few weeks later, I'd start feeling fatigued again and you'd see my numbers drop because I was moving more.

It takes time...it's a process.


----------



## Sabrina (Aug 30, 2016)

joplin1975 said:


> Yup, exactly.
> 
> I'm a runner. When I would undergo a dose increase, I would initially feel better and therefore run more. A few weeks later, I'd start feeling fatigued again and you'd see my numbers drop because I was moving more.
> 
> It takes time...it's a process.


You are a runner and have had a total thyroidectomy?? You are my hero! I haven't heard of anyone doing the things I love after a thyroidectomy and I was starting to believe it wasn't going to be possible. How did you get there? I assume it's ideal to be as consistent as possible because our dose is consistent, right? Like...don't run a lot one week then not run at all the next?

I would love to hear anything you are willing to share about what the process has looked like. My body went into rejection mode when I started adding some mild cardio on the elliptical in January and I haven't been able to get past that yet. If I can't do elliptical, running is a long ways away.

What is getting increased, your T4 meds? T3 meds? Or both?


----------



## joplin1975 (Jul 21, 2011)

Oh, I don't accept the thinking that you can't do things after a thyroidectomy. I think its just because people are 1) really impatient and 2) are not treated properly by doctors.

Keep in mind that I've been running since I was young. I also played Div 1 college soccer. When my cancer was found, my surgeon said it had likely been growing for at least 10 years and I had likely been hypo for longer. Which means I had been running and involved in high level athletics while hypo for years. So that was my baseline - I was used to working out when I was totally fatigued. I thought that was normal.

After my TT, I had to do RAI so I was off meds for weeks. My starting TSH was 121. I started walking for 10 minutes and worked up to 30 mins. Then I walked for 10 mins and did the elliptical for 10 mins. I increased to 20 for both. Then I started walking outside and did hills.

When I started running outside again, it was an up and down process. Some days were good. Other days I only ran for a bit and then walked the rest. You just listen to your body, be forgiving and do whatever you can do.

Since I was so severely hypo, I did blood work and dose changes ever four weeks (see my signature). It was a bit of an accelerated process. You just keep on keeping on until you feel better.

I only do t4 meds. I'm a weirdo super converter. T3 meds would probably kill me.


----------



## Sabrina (Aug 30, 2016)

joplin1975 said:


> Oh, I don't accept the thinking that you can't do things after a thyroidectomy. I think its just because people are 1) really impatient and 2) are not treated properly by doctors.
> 
> Keep in mind that I've been running since I was young. I also played Div 1 college soccer. When my cancer was found, my surgeon said it had likely been growing for at least 10 years and I had likely been hypo for longer. Which means I had been running and involved in high level athletics while hypo for years. So that was my baseline - I was used to working out when I was totally fatigued. I thought that was normal.
> 
> ...


I have lead a very active life as well, until the last few years before my surgery when I could barely get through my days. Before that, I ran everything from 5ks to half and full marathons. I would be happy to do some decent distance again, although the allure of 26.2 is gone. 

Do you have any labs with your FT4 and FT3? How do you know you're a super converter? I think I am the opposite, unless my body is hoarding it away as reverse T3 - I get those labs in about a week, they take longer than the others I just got.

May I ask what the process is like? As you are adding activity, how long does it take to feel it if you are undermedicated, and does that just seem like fatigue/hypo-symptoms? Right now I'm having some adrenal responses to activity so I need to figure out what's up with that.

Thanks so much for the information! It's awesome you have been able to run, and you are inspiring the heck out of me that maybe my life isn't over as I envisioned it.


----------



## joplin1975 (Jul 21, 2011)

Since I was getting blood work every four weeks, my insurance company stopped paying for free t3. But, every time I've had blood work done, my free t3 is pretty much in line with free t4 and, very often, in a better place (i.e., my free t4 might be at 30% of the range but my free t3 would be at, say 40% of the range).

That was five years ago. I don't have the results handy, but I'll see if I can dig them up.

There wasn't a clear cut pattern of how things progressed. When I first got back on synthroid, I think it only took one or two trip to the gym before I was wiped out. As things progressed, it might take two weeks. It wasn't a straight line.

I wish I could give you better answers, but...it just doesn't work that way


----------



## Sabrina (Aug 30, 2016)

I'm very interested to hear! Even when my T4 was a little over the range my T3 wasn't even in the range yet. I am being put on T3 meds.


----------



## Sabrina (Aug 30, 2016)

Hi joplin1975! I just had labs done today and am hoping my results indicate I can start exercising again.  Curious if you had any more info, I know you started out slowly, was it mostly fatigue that indicated need for rest, or did you experience elevated heart rate or anything else?

Were the increases in your dose due to increases in your activity levels? Or were some of the increases anticipated, did you start low at that initial 50mcg?

Thanks!


----------



## joplin1975 (Jul 21, 2011)

Post-surgery, I don't recall ever having an elevated heart rate.

I dealt with extreme fatigue and also swollen, sore joints. Everyone's symptoms will be different. You just will have to experiment.

Keep in mind I was severely, severely hypo (TSH of 121). So when I had just the smallest increase, I'd feel better. When I felt better, I did more mostly because I was desperate (I had gained 27 pounds in ~8 weeks). Then after a few days of doing more, I would get tired again.

It was a process is chasing my proverbial tail until I finally didn't get that energy drop when I increased activity.


----------



## Sabrina (Aug 30, 2016)

Glad you got to where you wanted to!!  Thank you for the information!


----------

