# Newbie after TT



## edrock13 (Feb 22, 2013)

Recently had a TT (12/31/12) due to the presence of a large cyst along with a number of nodules (coupled with a family history of thyroid cancer). I'm 37, and prior to this, pretty active. Last week, I went to the endo for my follow-up to get my lab results. I'm on 100mcg of Synthroid. According to the labs, I'm within "normal" range, but I feel FAR from normal. I've never been this tired or sluggish in my life. My levels were as follows:

TSH 3.22 Reference Range 0.40-4.50
T4 6.8 Reference Range 4.5-12.0

I've been trying to look on the internet to find out what "normal" means&#8230;I know that is sometimes not the best idea. I was telling the doc that I feel perpetually tired, etc., and he wanted to try to attribute it to everything else but the thyroid levels. It was a little frustrating to have them dismiss the possibility of the levels being off so quickly. Thyroid levels definitely don't seem very black and white. Also, I'm not sure if it is normal to only test for T4 and TSH&#8230;I thought there were other levels to check as well?

I really appreciate any insight/advice anyone could provide.


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## joplin1975 (Jul 21, 2011)

I think you look hypo and could use an increase in you synthroid. Your TSH is too high and your free t4 is too low, so you'd naturally feel tired.

Importantly, you should also have your free t3 run to get your dose just right.

Hang in there, I can totally relate to post-TT fatigue. It gets better!


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## Andros (Aug 26, 2009)

edrock13 said:


> Recently had a TT (12/31/12) due to the presence of a large cyst along with a number of nodules (coupled with a family history of thyroid cancer). I'm 37, and prior to this, pretty active. Last week, I went to the endo for my follow-up to get my lab results. I'm on 100mcg of Synthroid. According to the labs, I'm within "normal" range, but I feel FAR from normal. I've never been this tired or sluggish in my life. My levels were as follows:
> 
> TSH 3.22 Reference Range 0.40-4.50
> T4 6.8 Reference Range 4.5-12.0
> ...


Well; Webster has a good spin on what normal means!

In any case, feeling good would be normal. As far as I am concerned, ranges are to detect movement or establish the fact that something is there that shouldn't be or conversely something that is not there but should be.

Did the pathologist certify no cancer in your case? I sure hope so.

It looks to me like you are undermedicated! Or not converting. It would be in your best interest to get a FREE T3 test.

Most of us feel best w/TSH @ 1.0 or less and the FREE T3 @ about 75% of the range given by your lab.

Thanks for the ranges!


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## Octavia (Aug 1, 2011)

I agree with the others...seems like you are undermedicated to me. Try to get your TSH, Free T3, and Free T4 tested at the same time. That will give a more complete picture.

100 mcg is a pretty low dose for not having a thyroid. Not unheard of, but relatively low.


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## edrock13 (Feb 22, 2013)

Thank you all for such quick responses! It's definitely been a life-altering event for me so far. Not going to say I was in the best shape in the world before this, but I have run a number of marathons and half marathons, and right now I feel like I don't have the energy to run a mile. I have two sons that I coach baseball for (10 and 5), and I've tried to force myself to be as active and normal as possible so as not to impact them, but its SO hard to do sometimes. I've even had little bouts of depression, and it's hard to tell if it's because I don't feel like doing anything, or vice versa (not sure if that makes sense). I felt like getting the levels right would help get me out of this funk, but after the endo told me my levels are "normal," it honestly pushed me deeper in. I'm def going to go to another endo for a second opinion. I just wasn't sure if it was too soon after surgery or something for them to really be able to adjust the meds. Sorry for the mini-rant, I'm just not used to feeling like this. I do really appreciate your responses and support...gives me hope that my current "normal" will not be my permanent "normal."



Andros said:


> Did the pathologist certify no cancer in your case? I sure hope so.


Probably should have mentioned that, but yes...cancer free!


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## Octavia (Aug 1, 2011)

I'm going to guess that you are male, based on the fact that you coach your sons' baseball teams. Is that the case? And how much do you weigh?

Dosing guidelines to start with are 1.7 mcg/kg/day. Let's say you weigh 150 pounds, which is about 68 kilograms. At that weight, your starting dose would be 115 mcg/day. But if you're very active, you'd outgrow that starting dose pretty quickly. You have to listen to your body as well as the labwork--TSH, Free T4, and Free T3.

I weigh about 125 lbs and take 137 mcg of Levoxyl (Synthroid). I'm female, 43 years old, not as active as I should be.


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## edrock13 (Feb 22, 2013)

Male, 190 lbs.

Not sure if I'm reading too much into the "outgrow the starting dose" portion, but could that mean that the more active I am while on this dosage, the more tired I could theoretically become because exercise would also dictate that I need a higher dosage? Like a vicious cycle? To be honest, the more I have tried to do in terms of activity, the worse I have started to gradually feel...it's so hard to figure out what's mental/psychosomatic and what is physical/chemical...

I truly appreciate all of this information...


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## edrock13 (Feb 22, 2013)

Based on the dosage guidelines you just mentioned, my dosage should probably be around 147 mcg.

I was told originally at the hospital that they would likely start me on a low dosage so as not to overmedicate, and would adjust it accordingly based on bloodwork. Would there be any logical reason for them to keep me low for a while, even after the lab results? The only answer that I kept getting from the endo was that I was normal...lol! I may have to start sending my co-pay to this board...at least I'm getting some explanations...


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## joplin1975 (Jul 21, 2011)

You've got it right, mostly.  It is a vicious cycle and I was caught in it for a little while...would start to feel better, would get back on the trails and run again, only to feel worse after a week or so. Eventually, you "catch up" and find the right dose for your body and your activity level, but it can take some time and patience.


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## Andros (Aug 26, 2009)

edrock13 said:


> Thank you all for such quick responses! It's definitely been a life-altering event for me so far. Not going to say I was in the best shape in the world before this, but I have run a number of marathons and half marathons, and right now I feel like I don't have the energy to run a mile. I have two sons that I coach baseball for (10 and 5), and I've tried to force myself to be as active and normal as possible so as not to impact them, but its SO hard to do sometimes. I've even had little bouts of depression, and it's hard to tell if it's because I don't feel like doing anything, or vice versa (not sure if that makes sense). I felt like getting the levels right would help get me out of this funk, but after the endo told me my levels are "normal," it honestly pushed me deeper in. I'm def going to go to another endo for a second opinion. I just wasn't sure if it was too soon after surgery or something for them to really be able to adjust the meds. Sorry for the mini-rant, I'm just not used to feeling like this. I do really appreciate your responses and support...gives me hope that my current "normal" will not be my permanent "normal."
> 
> Probably should have mentioned that, but yes...cancer free!


I am grateful to know that! Very very good news indeed!

When you are undermedicated; no amount of forcing will help.

You may find the links below interesting.

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

FREE T3 explained by Woliner
http://thyroid.about.com/cs/testsforthyroid/a/freet3.htm

Keep in mind that you don't really need an endo. Any doctor can titrate your thyroxine replacement until you feel good.


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## Octavia (Aug 1, 2011)

Andros said:


> Keep in mind that you don't really need an endo. And doctor can titrate your thyroxine replacement until you feel good.


Ditto.

I have never seen an endo. My primary care physician offered to manage my thyroid meds, but since I already had a radiation oncologist on the case, I didn't need her to.

Yes, you pretty much have it right. Just like what joplin said above.

Those two labs you shared in your first post...while they are within normal range, they're not optimal. Your TSH is relatively high (even if it is within range) for some people's preferences, and your T4 is pretty low in the range. Those two things generally move in opposite directions, so that makes sense. You actually want those results to be the other way around, with TSH pretty low in the range and T4 higher in the range.

A good doctor will listen to how you feel AND look a the labwork, and adjust accordingly.

My guess is the longer you stay at 100 mcg, the higher your TSH is going to go (and the worse you'll feel). I'm guessing those labs were taken about 6 weeks after your surgery, is that correct? In 6 more weeks, I suspect they'll be worse, with the cumulative effect of the low dose over a few months.


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## joplin1975 (Jul 21, 2011)

And, just for reference, I'm female, 37, 5'4"ish, 145-150ish, and am obnoxiously active...I'm currently on 150mcgs with my surgeon pushing for me to consider 175. Speaking VERY generally, since men are usually bigger with more muscle mass, you see them on higher doses. So, 100 mcgs for you would be very, very...unusual.


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## edrock13 (Feb 22, 2013)

The labs were taken 6 weeks post surgery. I'm definitely going to speak to my PCP...in fact, I have an appt already scheduled for Thursday. He is also a TT veteran...he had it done by the same surgeon as I did. I assume he will be a little more sympathetic, having gone through it himself already. Not sure if he will be willing to manage my dosage, but it's worth an inquiry.

Haven't had good luck with endos lately anyways...I think it's time to try a new direction. Thanks again, and I'll post and update post-visit on Thursday!


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## edrock13 (Feb 22, 2013)

joplin1975 said:


> obnoxiously active...


LOL...care to define "obnoxiously active"??? For some reason, I love the way that sounds...


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## joplin1975 (Jul 21, 2011)

edrock13 said:


> LOL...care to define "obnoxiously active"??? For some reason, I love the way that sounds...


Hee, sure.

But, first, my PCP offered to manage my dose if things got worse with my endo...I bet yours would be willing! It's not rocket science, but it does take time and patience.

I live on a small horse farm, so every morning and every night, I'm lifting & carrying hay bales, shoveling manure, and pushing around a heavy wheelbarrow. During hay season, we are loading, unloading and stacking hay all the time. We usually do about 1,000 40-50 pound bales a season.

I have a "real" day job and am fortunate enough to be able to work out during lunch. Mondays are an hour long bootcamp class, Tuesday cardio (usually running), Wednesday running/lifting upper body, Thursday cardio (usually running) Friday running/lifting lower body...on Saturdays and Sundays, I go for long trail runs...usually 7-10ish miles.

And, I walk the dog a couple of mile every night. So, obnoxiously active.  I'm heavy for my height, but a lot of it is muscle mass, hence my surgeon's desire for me to bump up a dose. I'm sorta holding off for now because I seem to be sensitive to the stuff and feel good right now, but...who knows what the future will hold.


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## edrock13 (Feb 22, 2013)

Considering your explanation, "obnoxiously active" sounds 100% accurate. At this stage, I would settle for enough energy to be "somewhat annoyingly active" ...


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## Lovlkn (Dec 20, 2009)

Joplin,

I notice you only post TSH. Is that the only test your doctor runs on you?

Do they ever tun FT-4 and FT-3? Those are most important when adjusting doses. I have been tracking my labs for 12 years and can attest to the inaccuracy of TSH for dosing.

Since you had TT and RAI I assume you had cancer and are trying to get your TSH down.

I did not have cancer but can comment that my TSH disappeared after adding Cytomel to my mix. I also did not feel good until I added Cytomel to my mix, the Cytomel put my Frees into a better place for me.


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## joplin1975 (Jul 21, 2011)

Thanks Lovlkn. 

No, they aren't solely focused on TSH. Because I was so under medicated after surgery, I was getting tons of blood work and insurance started rejecting free t3 tests, so we're trying to be strategic about testing that, just for financial considerations. I feel *great*, my free t4 is at the top of the range (if not high some times), and when free t3 was run it was always mid point or higher. So I think I'm ok there. Surgeon is just worried about getting TSH somewhere between 0.1-0.3 because I'm at moderate risk for recurrence.


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## Lovlkn (Dec 20, 2009)

My experience...

When I added Cytomel my FT-3 went up and my TSH completely disappeared.

Even with high range FT-4 I did not feel well - I also had TSH showing at that point.

We have completely different situations - I am sharing my experience as I think it may help reduce your TSH by adding a small dose of Cytomel. If you do you may also have to reduce your Synthroid as your higher FT-3 may bump up your FT-4.

I have tried so many combinations my 8 years post op and this will likely work to eliminate your TSH.


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## joplin1975 (Jul 21, 2011)

Understood and I appreciate it.

Right now, I'm really hesitant to trying any t3. I have a really hard time with dose adjustments, tend to be very sensitive to the meds, and seem to be converting effectively. Both my endo and surgeon don't think I would be a good candidate for t3 supplementation. And, most important to me, I feel excellent. Better than ever. I don't want to mess that up. It's just trying to balance that with my nutty lifestyle.  If we continue to struggle with the TSH stuff, I'll reassess (more labs in March), but for now I'm thrilled with how I feel.


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## edrock13 (Feb 22, 2013)

OK, so got the results of my tests back that my PCP sent me for. TSH was 6.26 (ref range 0.40-4.50) this time, and T4 was 7.2 (ref range 4.5-12.0).

My original results 2 weeks prior were 3.22 and 6.8, respectively. My dosage was increased from 100mcg to 125mcg, with another test to follow in 6 weeks. PCP indicated that he was sure I would need another dose increase at that time.

My questions are as follows:
When undermedicated, is it normal to have your levels fluctuate so greatly in such a short time frame?

What else could impact the levels like that?

If I force myself to resume as normal of an exercise schedule as I used to have, will that deplete the levels moreso than without exercise?

I apologize if these sound like dumb questions. I wasn't prepared for the levels to be so different! I figured the TSH would hover around the 3.something or maybe low 4 range...makes me wonder if I had waited until the next set of tests my Endo wanted to run what they would have looked like then!

Understanding that there are better tests than TSH and T4, I asked someone in my doctor's office about why other tests weren't run, and I was told that it had to do something with the insurance company not wanting to pay for them (something like that)...does that sound accurate?


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## Octavia (Aug 1, 2011)

Deleted...I asked a stupid question. Should've read the post more closely.


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## joplin1975 (Jul 21, 2011)

As you get further "away" from the surgery and continue to be undermedicated, your TSH can start to rise pretty rapidly. That's a fairly big jump, but no unheard of.

With regard to exercise, it's different for everyone, but I just listened to my body and did what I could. I did lots of walking (which is weird for me as I'm a runner). I don't think you'll want to hold off on all physical activity, because you want the meds titrated up to a level where you can get back to your normal. Docs really don't want to over medicate you, so you have to find a happy medium during the medication regulation process.


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## edrock13 (Feb 22, 2013)

Hope everyone is doing well!

OK, just got the results from my latest test. For some reason, I guess he requested something a little different this time than he did last time.

Quest Diagnostics
TSH W/REFLEX TO FT4: 2.86
Reference Range 0.40-4.50

Still at 125mcg Synthroid. Haven't spoken to the doc yet, got the results from the nurse. Does anyone have any idea if this measures TSH the same way as my previous test? If yes, it's definitely better at 2.86 than it was at 6.26. Probably still not ideal, as I still feel very fatigued. Any clues as to why he would request this? No actual report of the T4...

Still not as active as I would like to be, starting to ramp up activity again (starting to walk/jog, in addition to the coaching stuff) before my next blood test. Feel like I'm inching closer to the goal, but the goal feels pretty far away.

BTW, thoughts and prayers go out to all of those potenially affected by the senseless Boston Marathon bomings. :sad0049:


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## edrock13 (Feb 22, 2013)

Had another blood test this week, and spoke to the doctor's office today...they are upping me to 150mcg. I don't know what the test results were, I am going to pick them up later today. I'm trusting the process and so far, it seems to be working.

@Joplin1975- I made a concentrated effort to be more active since my last test, and I guess that was reflected in the levels. Not sure how much, but I will check once I get the results. Just wanted to thank you (and Andros and Octavia and every one else on this board) for the positive encouragement and support. I feel like I'm inching ever closer to "normal" the way I define it. Hope you are still obnoxiously active...lol


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## joplin1975 (Jul 21, 2011)

Glad to hear you are doing well and getting that increase. Hang in there!!!


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