TSH results, thinking through options

[PeterPan]

Ok, so we got back my new labs, and my TSH is 1.55. The doc had said he often takes people below 2 (said this after saying oh it's mild and hold, haha), so I don't think he's going to say change it. My brain fog cleared up and I started weight lifting again, so that part is good. I'm not like super human energy ball at this dose, but I'm functional, cleaning the house, decluttering, not sluggish. However I also don't think it's quite right. Not bad, just not quite right. And that's on 3/4 gr naturethroid.

Option 1--keep the 3/4 gr naturethroid, say thank you Jesus, and just up my kelp a bit (I'm still taking kelp as well) to get to a sweet spot. I had been taking more kelp and had decreased by 25% when I started the thyroid meds. The kelp alone was NOT enough to get my TSH to normalize, but it does boost energy, etc.

Option 2--run the more thorough labs (free T3, free T4, blah blah) and try to fine-tune it by adding in some T3 and decreasing the naturethroid to a 1/2 gr or something like that. My *suspicion* is my T4 is plenty high and that I'm not converting well, leaving my T3 a bit under. I think that would explain why I don't feel quite the way I want to feel even though the TSH is fine. This doc was trying to run just TSH to save me money, and he's not a super-swanky doctor for thyroid or trying to be hip or progressive. He's just been rolling with what I asked for. So I have an appt next week but don't have the labs to fine-tune like that, meaning either he has to call them in or I ask at that appointment and then have ANOTHER appointment or I pay to do them through HealthCheckUSA ($$) and take the results in or...  Supposedly they keep the blood and could run more tests, but maybe it's too late? The blood was drawn Friday, and I think he's out of town till late next week when our appt is.

Option 3--something else I haven't thought of.

Like I said, for a pretty run of the mill doc, he's been agreeable with anything reasonable I suggest and easy to work with. My TSH has gone down nicely with the meds (5.5 to 3.5 to 1.55), and just the small amount was enough. My energy is noticeably better with them and my ability to stay awake while driving and reading to ds. Part of my concern in the back of my mind is adrenal fatigue. I don't want to be taking more than I need or components I don't need. But I do need to feel better, definitely. 

Option 4--Hold at this dose, maybe even punt on that appt (I have refills) and ride out this dose? Is there warrant to *increase* it even though my TSH is 1.55? We did 8 weeks on the first dose and 6 weeks on this one. Someone here had said to give doses time to come to feeling the full effect, and I feel like it is improving weekly, definitely. Maybe if I just hold here a few weeks, I'll know what I want? 

I do wish he had done the fuller labs. TSH alone just isn't telling us much. But I think that's overkill to be tweaking and adding in T3 when the naturethroid dose is so low already. Seems like I shouldn't need to do that.

I don't know, see anything there? I don't know how good it's reasonable to expect to feel at 42 either, lol. I don't feel like I'm as zesty as I'd like to be, but I don't know that we need to up it again given that TSH is 1.55. Sigh.

[Ann.without.an.e]

I cannot remember for the life of me, even though I feel like we have "talked" about this...do you have Hashimoto's?  If you aren't sure, have you been tested?  It is such an overlooked factor when diagnosing thyroid conditions, yet it really changes the goals in treatment. Many that know Hashi's well or have it will agree that you feel best when you TSH is less than a 1 with Hashimoto's.  The reason behind this is because the more you can suppress your thyroid's activity, the less active the auto immune response.  Less thyroid activity = less auto immune factor.  For me, it is a huge factor to how I feel and I have a doctor who agrees.

You can feel so bad that you accept it to feel better, even if you aren't really at your best.  

I would....

Try a dose increase if Hashimoto's is a factor. 6 weeks after the dose increase have another lab run and pull a full thyroid panel to peek at your other numbers as well.

If you don't know about Hashi's then have more tests run - a FULL thyroid panel and also the antibodies tests for Hashi's.

If you know that you do not have Hashi's (tested recently for antibodies) then still have a full panel done to test the T3, etc.  

If it has been a while since testing antibodies and they were negative, possibly test again.

The other big reason to know if you have Hashimoto's is kelp and iodine are not always a good addition when you have Hashimoto's.  It can be great if your thyroid is simply sluggish.  

 

Good luck ❤️ 

Edited December 30, 2018 by Attolia

[Ellie]

8 hours ago, PeterPan said:

Ok, so we got back my new labs, and my TSH is 1.55. The doc had said he often takes people below 2 (said this after saying oh it's mild and hold, haha), so I don't think he's going to say change it. My brain fog cleared up and I started weight lifting again, so that part is good. I'm not like super human energy ball at this dose, but I'm functional, cleaning the house, decluttering, not sluggish. However I also don't think it's quite right. Not bad, just not quite right. And that's on 3/4 gr naturethroid.

Option 1--keep the 3/4 gr naturethroid, say thank you Jesus, and just up my kelp a bit (I'm still taking kelp as well) to get to a sweet spot. I had been taking more kelp and had decreased by 25% when I started the thyroid meds. The kelp alone was NOT enough to get my TSH to normalize, but it does boost energy, etc.

Option 2--run the more thorough labs (free T3, free T4, blah blah) and try to fine-tune it by adding in some T3 and decreasing the naturethroid to a 1/2 gr or something like that. My *suspicion* is my T4 is plenty high and that I'm not converting well, leaving my T3 a bit under. I think that would explain why I don't feel quite the way I want to feel even though the TSH is fine. This doc was trying to run just TSH to save me money, and he's not a super-swanky doctor for thyroid or trying to be hip or progressive. He's just been rolling with what I asked for. So I have an appt next week but don't have the labs to fine-tune like that, meaning either he has to call them in or I ask at that appointment and then have ANOTHER appointment or I pay to do them through HealthCheckUSA ($$) and take the results in or...  Supposedly they keep the blood and could run more tests, but maybe it's too late? The blood was drawn Friday, and I think he's out of town till late next week when our appt is.

Option 3--something else I haven't thought of.

Like I said, for a pretty run of the mill doc, he's been agreeable with anything reasonable I suggest and easy to work with. My TSH has gone down nicely with the meds (5.5 to 3.5 to 1.55), and just the small amount was enough. My energy is noticeably better with them and my ability to stay awake while driving and reading to ds. Part of my concern in the back of my mind is adrenal fatigue. I don't want to be taking more than I need or components I don't need. But I do need to feel better, definitely. 

Option 4--Hold at this dose, maybe even punt on that appt (I have refills) and ride out this dose? Is there warrant to *increase* it even though my TSH is 1.55? We did 8 weeks on the first dose and 6 weeks on this one. Someone here had said to give doses time to come to feeling the full effect, and I feel like it is improving weekly, definitely. Maybe if I just hold here a few weeks, I'll know what I want? 

I do wish he had done the fuller labs. TSH alone just isn't telling us much. But I think that's overkill to be tweaking and adding in T3 when the naturethroid dose is so low already. Seems like I shouldn't need to do that.

I don't know, see anything there? I don't know how good it's reasonable to expect to feel at 42 either, lol. I don't feel like I'm as zesty as I'd like to be, but I don't know that we need to up it again given that TSH is 1.55. Sigh.

Option 2. You MUST know what your Free T3 and Free T4 are. To treat based solely on TSH is a recipe for disaster. Your Free T3 should be in the upper fourth of your lab's ranges; Free T4 in the upper half; TSH in the lower fourth (which puts 1.55 slightly high and therefore in the hypothyroid range).

3/4 of a grain of Naturethroid is negligible. Most people feel their best on three to five grains. If you have caught this in the early stages of hypothryoidism, then yay; 3/4 of a grain might be enough...but you need all the labs.

And you should be able to take just Naturethroid without having to add specific amounts of T3.

If you have not already perused this site, you should.

Yes, even at 42 you should feel great. I'm telling you this as someone who was diagnosed at your age, and then undermedicated for 20 years. I wish I'd had more information back then, because now I need *five grains* of Naturethroid to feel optimal. Perhaps if I had been medicated properly back then my poor little thyroid gland would still have some operational ability. 😞

[ktgrok]

Also, have you looked at your other lab work recently? Vitamin D, B12, Ferritin, Hemoglobin, Hematocrit, etc? All of those things impact energy levels as well. 

[gardenmom5]

tsh - you shouldn't dose by  tsh.  and 1.55 is still technically hypo.  even if your dr doesn't consider it to be.  tsh is a pituitary hormone whose job is to tell your thyroid to make thyroid hormone (there are actually five thyroid hormones).

did he do free t3 or free t4? that's how we dose.  those are far more important than tsh.  

have they checked your RT3?    then you're looking at tailoring (though I felt worse on the RT3 protocol).     example. - my free t3 is high - while free t4 is optimal.  I'm "pooling".  it's t3 isn't getting into the cells. - my adrenals are the problem.

how are your iron labs?  (there are four).   

how are your adrenals?    they really do go hand in hand.  (24 hr savlia test - the blood test is very misleading)

and yes

D3, B12,- and if your iron labs are good but your ferritin isn't - check for mthf.

[PeterPan]

6 hours ago, Attolia said:

I cannot remember for the life of me, even though I feel like we have "talked" about this...do you have Hashimoto's?  If you aren't sure, have you been tested?  It is such an overlooked factor when diagnosing thyroid conditions, yet it really changes the goals in treatment. Many that know Hashi's well or have it will agree that you feel best when you TSH is less than a 1 with Hashimoto's.  The reason behind this is because the more you can suppress your thyroid's activity, the less active the auto immune response.  Less thyroid activity = less auto immune factor.  For me, it is a huge factor to how I feel and I have a doctor who agrees.

You can feel so bad that you accept it to feel better, even if you aren't really at your best.  

I would....

Try a dose increase if Hashimoto's is a factor. 6 weeks after the dose increase have another lab run and pull a full thyroid panel to peek at your other numbers as well.

If you don't know about Hashi's then have more tests run - a FULL thyroid panel and also the antibodies tests for Hashi's.

If you know that you do not have Hashi's (tested recently for antibodies) then still have a full panel done to test the T3, etc.  

If it has been a while since testing antibodies and they were negative, possibly test again.

The other big reason to know if you have Hashimoto's is kelp and iodine are not always a good addition when you have Hashimoto's.  It can be great if your thyroid is simply sluggish.  

 

Good luck ❤️ 

Thank you for explaining that! I had heard people in the past talking about taking their doses to the point of suppressing TSH, and I didn't get why. So here's the answer. I had antibodies run 10-ish years ago (2007) and they were TPO Ab <10, antithyro Ab <20, so both normal. TSH was 7.87 then. Fall 2017 TSH was 5.63, so the nutritionist suggested I take iodine to see it it would get me the rest of the way there. Began the iodine, started gaining weight, did not feel right even though had crazy energy, just something was not right. So eventually, after regaining 20-30 pounds (I lost track, it was ugly), in summer of 2018 I discontinued the iodine and got a plain, normal, random GP, just the first available. So fall 2018, TPO Ab=14, reference 0-34, and TSH=6.49, Free T4, 1.25 ref 0.82-1.77. 

So *my* suspicion, unsubstantiated, is that the iodine was stimulating my thyroid to dump thyroid, hence the energy, but increasing the antibodies and flaring things up, hence not feeling right. I've been on kelp for 15+ years and never had problems or untoward side effects, and the low antibodies in 2007 were while on the kelp, yes. However the straight iodine was bad voodoo. Why I continued taking it is beyond me. I read stupidity about how it's causing you to detox and that if you took flouride it would stop that, that what I was feeling was side effects of detoxing. All dumb. 

So I don't think more kelp is an issue, but I'm definitely not gonna go dumping straight iodine in my system again, mercy. I'm much better on the nature-throid, with the brain fog clearing up. I think mainly I'm just frustrated that the doc thinks saving money is more important than making data-driven decisions. I can go to healthcheckusa and run the labs, but it's pricy... If the doc had run them (like he should have), I'd have data to make informed decisions. TSH through the doc is only $14! But even then, it's my fault. I should have advocated and said no, let's pay the money, let's run everything. But I was trying to be agreeable. I'm a really disagreeable cuss honestly, and I was just trying to be agreeable. Sort of like trying on a persona or something, lol. I hadn't been to a doc in over 15 years and I was like hey, let's just see how it rolls if I do what he says, lol. And he's a nice guy and agreeable. I just don't see how we're supposed to sort this out without data.

I don't feel bad now, honest. We're talking subtle nitpicky stuff. I've been able to resume working out at the gym, which started at the .5 gr, and with the .75 gr I was ready to start lifting weights again. I'm a little tired the next day instead of dead. It's coming. And I'm also coming off that bleeding from the lungs bronchitis in summer where they put me on 50mg of prednisone. It's why I've been a bit patient, because I think my body is trying to restore from all that. It was a wicked year the last year or two, with lots of antibiotics, pneumonia, etc. I'm just trying to live quietly and not get sick. It's my whole big goal. 

I have enough energy to go walk 10-15 minutes or lift if I take breaks. I'm just not completely perfect like I want to be. My natural state is pretty ADHD (like I'm clinical, haha), and I'm not quite back to that. I'm also 42, turning 43 in a few months, and I don't know if that's hitting me. These people lifting weights are usually much younger than I am, lol. I may be a little unrealistic. 

Ok, so if we say the fall 2018 antibodies testing is good enough (where I'm in the normal range even if higher than 10 years ago), then I should run more labs. Or is there a nuance on how best to interpret antibodies testing? 

If I pay and get the Free T3 and Free T4 run, thing is how will I know when those are ideal? I mean at some point we're back to just how I feel. What I'm worried about, and I don't mean to contradict the doctor on this, but it just concerns me that we could actually be running my T4 into the hyper range trying to get my T3 up to where I feel good. That's the part that confuses me and doesn't make sense to me. He didn't run my Free T3 this fall (dork) and that Free T4 was already pretty decent. So what if it's now maxed out and it's just the T3 that is lagging? Then it would have made more sense to do .5 gr naturethroid and add in some T3. But we can't tell that without data.

On the plus side, my bowels move better (with only additional magnesium, not magnesium and fiber) and my anxiety is lower and my brain fog better. Actually, the first month on the meds, at .5gr plus the higher level of kelp, I ovulated AND had really good cm. Then I took the kelp down (it was so high and I was having issues with discomfort, pills getting stuck going down) and at .5gr but less kelp no ovulation. .75 gr same kelp, ovulate but not as good cm. So what I WANT is good cm and ovulate, which I had at .5 and the higher kelp. But that may have been a fluke? 

Sorry, that's long. So it wouldn't be so crazy to just up my kelp. I could try it and see what happens. I think my scrip is 3 months. I don't think he really cares what I do, like whether I stay or tweak or hold on the appt. If I'm happy he'll probably be chill. He's a pretty chill guy.

[PeterPan]

6 hours ago, Ktgrok said:

Also, have you looked at your other lab work recently? Vitamin D, B12, Ferritin, Hemoglobin, Hematocrit, etc? All of those things impact energy levels as well. 

Yup, good question! He ran all those things in the fall, including the D at my behest. The D was top of the range, and with our glorious winter weather I could tell it was dropping. I jumped from 10k to 15k IU and my energy came back. I wondered if maybe that's why my TSH went down so much this time? It was right during that 6 weeks that I bumped the D. I could tell it was dropping with winter. I also upped the K2 to make it work better. 

All my other labs were really good, like crazy good. Well except for my low good cholesterol, which is a totally different, unrelated topic I've been trying to figure out.

[PeterPan]

6 hours ago, Ellie said:

Option 2. You MUST know what your Free T3 and Free T4 are. To treat based solely on TSH is a recipe for disaster. Your Free T3 should be in the upper fourth of your lab's ranges; Free T4 in the upper half; TSH in the lower fourth (which puts 1.55 slightly high and therefore in the hypothyroid range).

3/4 of a grain of Naturethroid is negligible. Most people feel their best on three to five grains. If you have caught this in the early stages of hypothryoidism, then yay; 3/4 of a grain might be enough...but you need all the labs.

And you should be able to take just Naturethroid without having to add specific amounts of T3.

If you have not already perused this site, you should.

Yes, even at 42 you should feel great. I'm telling you this as someone who was diagnosed at your age, and then undermedicated for 20 years. I wish I'd had more information back then, because now I need *five grains* of Naturethroid to feel optimal. Perhaps if I had been medicated properly back then my poor little thyroid gland would still have some operational ability. 😞

Ok, here's the thing. I used to take 5 gr of armour, way back in the day. That was a long time ago, back when I was having a lot of physical problems. I definitely don't need that now, mercy. I think if I were at 1 gr I'd probably be zip zooming along. Thing is, without that Free T4 we can't tell what is going on. I'm concerned my Free T4 will go too high if we just keep upping. 

To me, my energy is *almost* there. I think if I went to 1 gr, I'd have it. I just don't know if he'll DO the 1 gr or if he'll hold. And if he's gonna hold, then why bother having the appt? Our conversations are usually something like this:

-your labs seem fine now, it's very mild hypothyroidism

-I'm still symptomatic and think we ought to bump

-how are your bowels? are you still having to take fiber and and ?

-better but still an issue

-fine we'll bump

And every time, it's bizarre like that, with him seeming to think no and then saying yeah fine whatever. LOL I have no clue what to make of it. And if my TSH dropped from 3.5 to 1.55 going from .5gr to .75 gr, there's NO WAY he's gonna want to go to 1 gr, right?

When I was on 5 gr armour I had severe adrenal fatigue. I couldn't walk five minutes on level ground without taking a nap. I had CFS and MCS and it was awful. The whole thing was awful. We use nutrition, dumped the doctor, and pulled out of that very slowly. It wasn't super smart of me not to get *some* thyroid meds, but it also wasn't hurting me, if that makes sense. I can go to Disney, walk all day, day after day, and have a great life. What crashed that was the 4th round of antibiotics this past winter and 50mg of prednisone for coughing up blood with bronchitis. I have had NO problems with my asthma since that stress ended. I just couldn't get my mojo back, which is why I went for the thyroid meds.

So I can't fathom how he can agree to go from .75 gr to 1 gr if my TSH would drop again. That doesn't seem like something he would do. And I would have alternatives, like resuming with my nutritionist to see if I could eat my way back into some more energy.

I decided to take some extra kelp this afternoon, so we'll see what happens. If it feels like good voodoo, I could do that for a while and then run full labs (Free T3/4) and see where I'm at. And I think I may continue to improve even at this dose. I feel stronger every week, like more is going deep somewhere and firing better. I could do that for a month, punt, see how I feel.

[PeterPan]

5 hours ago, gardenmom5 said:

tsh - you shouldn't dose by  tsh.  and 1.55 is still technically hypo.  even if your dr doesn't consider it to be.  tsh is a pituitary hormone whose job is to tell your thyroid to make thyroid hormone (there are actually five thyroid hormones).

did he do free t3 or free t4? that's how we dose.  those are far more important than tsh.  

have they checked your RT3?    then you're looking at tailoring (though I felt worse on the RT3 protocol).     example. - my free t3 is high - while free t4 is optimal.  I'm "pooling".  it's t3 isn't getting into the cells. - my adrenals are the problem.

how are your iron labs?  (there are four).   

how are your adrenals?    they really do go hand in hand.  (24 hr savlia test - the blood test is very misleading)

and yes

D3, B12,- and if your iron labs are good but your ferritin isn't - check for mthf.

Ooo, that was the one, thank you for reminding me!!! This doc didn't run homocysteine. When we ran genetics, I had the MTHFR defect, which I was not expecting. I have some other defects that lend toward an over-methylation profile, but I'm actually that mix with a heterozygous MTHFR defect as well, just to keep things interesting. So I read something that the B12 (was it that? now I'm forgetting, I had the flu) affects homocysteine which then causes the low good cholesterol levels. I've had that for years upon years with no explanation. 

So I that would be another angle for me to pursue for the energy thing, rather than assuming it's all thyroid. 

I'm not up on the 4 irons, but let me see. 

HDL was 38 with them wanting >39. 

Hemoglobin 14.2 range 11.1-15.9

Hematocrit 41.2 range 34.0-46.6

There are lots of other labels and numbers. He went through them, but I don't know much about it. Everything except HDL was in the normal range and seemed good. 

So the whole homocysteine, low HDL, folate/methionine thing, etc. I just haven't sorted out. It's possible my energy complaints at this point aren't really about my thyroid. And they're not *bad*. I'm just not as spunky as I should be. It's a little easier to sit than to go and I don't wake up with VA-VOOM like I should. I've woken up ON, all my life. Like ready to do calculus ON. I'm waking up more slowly. 

Maybe the extra kelp will take care of it. I don't know. I think maybe I have research fatigue. I spend so much time researching ds' stuff (genetics, how to teach syntax, OT stuff, on and on) that when we say oh now research hypolipidemia and figure more stuff out I'm just done. Sigh. That's whining. Just where it is.

[Ellie]

Your TSH *should* be "suppressed."

You need Free T3 and Free T4 tested. If they are in the optimal ranges (FT3 in the upper fourth of your lab's ranges, FT4 in the upper half), then you know your health issues are not thyroid-related. You can NOT NOT NOT treat/medicate based on TSH. When you have enough FT3 and FT4, there won't be very much for your pituitary gland to do (because you know that your pituitary gland makes TSH--thyroid stimulating hormone--when it senses there isn't enough of the Frees), so there won't be much TSH.

You might be in early enough stages of thyroid disease that you can help by dietary changes and supplements and whatnot. But you *always* need to know what your Frees are doing, and treat those, *NOT* your TSH.

The fact that your TSH was so high does indicate a thyroid problem, though.

[PeterPan]

8 hours ago, Ellie said:

Your TSH *should* be "suppressed."

See that's the controversial part. My nutritionist had people using her who had done that who still felt like crap. I was on 5gr of armour and tried T3 and still had CFS. I don't see the value in suppressing below the normal range if there is no issue with hashimotos. My antibodies have never left the normal range. I *suspicion* they were going up taking the straight iodine, but I don't know that they would have dropped dramatically in 6 weeks. It seems like the people who complain about iodine setting off Hashimotos found the change permanent.

I liked how I woke up this morning with the extra kelp dose yesterday. It was more how I should be. I feel like keeping the doc appointment this week wouldn't give me any more info. I can't fathom he would increase the dose again, because that would push me in the hyper range. If I take this slightly increased kelp and like how I feel, then I'm good. I could do that 4-6 weeks and then rerun labs and run them COMPLETELY and see where I'm at. 

Also, I don't have *evidence* on this, but I think partly the way I'm taking the meds might be why I'm making good progress with a very low dose. I found studies (admittedly with T4-only meds, not NDT) showing that taking the meds at night resulted in more stable TSH, so presumably better absorption and compliance. Also there's data on better absorption when taking the meds with C for the acidity. 

So I fast 3-4 hours in the evening, then take my meds with C, and then go to bed. There are also studies showing thyroid naturally surges at night to prepare for the coming day, so I thought this was nice to fit with the natural flow/timing of the body. And it's nice waking it up with it actually in your system! 

Anyways, I'm taking my meds way far apart from calcium, iron, everything else that could bind with it. I *suspicion* that's why I'm getting good results with such a low dose. I could be wrong, but that is what I'm doing. 

Edited December 31, 2018 by PeterPan

[Ellie]

43 minutes ago, PeterPan said:

See that's the controversial part. My nutritionist had people using her who had done that who still felt like crap. I was on 5gr of armour and tried T3 and still had CFS. I don't see the value in suppressing below the normal range if there is no issue with hashimotos. My antibodies have never left the normal range. I *suspicion* they were going up taking the straight iodine, but I don't know that they would have dropped dramatically in 6 weeks. It seems like the people who complain about iodine setting off Hashimotos found the change permanent.

I liked how I woke up this morning with the extra kelp dose yesterday. It was more how I should be. I feel like keeping the doc appointment this week wouldn't give me any more info. I can't fathom he would increase the dose again, because that would push me in the hyper range. If I take this slightly increased kelp and like how I feel, then I'm good. I could do that 4-6 weeks and then rerun labs and run them COMPLETELY and see where I'm at. 

Also, I don't have *evidence* on this, but I think partly the way I'm taking the meds might be why I'm making good progress with a very low dose. I found studies (admittedly with T4-only meds, not NDT) showing that taking the meds at night resulted in more stable TSH, so presumably better absorption and compliance. Also there's data on better absorption when taking the meds with C for the acidity. 

So I fast 3-4 hours in the evening, then take my meds with C, and then go to bed. There are also studies showing thyroid naturally surges at night to prepare for the coming day, so I thought this was nice to fit with the natural flow/timing of the body. And it's nice waking it up with it actually in your system! 

Anyways, I'm taking my meds way far apart from calcium, iron, everything else that could bind with it. I *suspicion* that's why I'm getting good results with such a low dose. I could be wrong, but that is what I'm doing. 

I will say again that thyroid issues should NOT NOT NOT be diagnosed/treated/medicated based on TSH. Whether you agree with whether it should/could be "suppressed" or not, it should never be the basis for treatment. And it is not "suppressed," anyway. When your Free levels are optimal, your pituitary gland doesn't need to make more of it.

We also should never do anything based on our levels being "normal." "Normal" means "the range of levels from people who feel like death warmed over to people who feel really great." You want *optimal* (again, Free T3 in the upper fourth of your lab's 'ranges, Free T4 in the upper half). Which is why you need Free T3 and Free T4.

I think I said this above: you may be in early enough stages of thyroid disease that you can make lots of improvements with diet and supplements. That would be great. But unless and untill you have your Frees tested to see if they are *optimal,* then you don't really know how your thyroid is doing.

Also, FTR, my antibodies are normal ("normal" for antibodies is ok, lol); but my doctor did a sonogram, and there's a nodule; that means Hashimoto's.

And I'll recommend again Stop the Thyroid Madness.

[PeterPan]

1 hour ago, Ellie said:

Also, FTR, my antibodies are normal ("normal" for antibodies is ok, lol); but my doctor did a sonogram, and there's a nodule; that means Hashimoto's.

Regular GP or a different kind of doc? My neck has been larger the last couple years (turtlenecks uncomfortable, etc.), and I wondered if it actually went down a bit with starting the meds. I *think* it did, but I'd need to see pictures or something. He never offered a sonogram, but he's kind of funny.

I'm definitely planning on doing the more thorough labs. It's just more I have this appt on 1/3 and either need to cancel or keep it. I have some other things I want done (homocysteine and b12/folate), so I don't know if I want to keep the appointment and try to badger him to run them all correctly (which doubtless he WON'T) or just order them through HealthCheckUSA and be done with it. 

So then what do they do when they find a thyroid nodule? And was it detectable with palpitation?

[PeterPan]

That's the thing. The thyroid labs he ran when he was running more were only free T4 and TSH and I forget, but no free T3, no RT3. That's why I'm not sure it's worth fooling around with him, trying to save a few bucks, just to have them run incorrectly and have to do them again. I sort of have a mental limit on vampirism.

[Ellie]

10 minutes ago, PeterPan said:

Regular GP or a different kind of doc? My neck has been larger the last couple years (turtlenecks uncomfortable, etc.), and I wondered if it actually went down a bit with starting the meds. I *think* it did, but I'd need to see pictures or something. He never offered a sonogram, but he's kind of funny.

I'm definitely planning on doing the more thorough labs. It's just more I have this appt on 1/3 and either need to cancel or keep it. I have some other things I want done (homocysteine and b12/folate), so I don't know if I want to keep the appointment and try to badger him to run them all correctly (which doubtless he WON'T) or just order them through HealthCheckUSA and be done with it. 

So then what do they do when they find a thyroid nodule? And was it detectable with palpitation?

My regular doctors undermedicated me for 20 years. Finally, my most recent doctor referred me to an endo when I threw a fit in her office after she told me my labs were "normal" so there was no reason for me to not feel well. And happily, this endo was worth his weight in gold (the average number of doctors that people see before they find the one who knows what he's doing is *five.*).  The first thing he did was a sonogram, as well as a boatload of labs (including the Frees). I can't remember if he can feel the nodule by palpitating it or not; it shows up on the sono. We redo the sono annually and it has never grown, thank goodness. Right now, that's all that he's doing: monitoring the nodule. I haven't asked what happens if it grows.

*I* would probably just order the correct labs through HealthCheckUSA and be done with it. What happens with the results, though? If your Frees show that you are hypo, will your doctor be willing to increase your meds to 1 grain?

[Martha in GA]

Thanks for sharing your story, Peter Pan. I don't have anything helpful to add, but I always read the thyroid threads because I've been on thyroid meds for 20 years and none of my doctors seem to know anything, nor do they care, and have dosed solely on TSH (and even then, they have allowed my TSH to climb above 3 before taking me seriously that I was definitely feeling tired). A couple of years ago, I pushed for a full thyroid panel instead of just TSH, and they still didn't do T3 free, but they did determine that I have Hashimoto's (I was a little frustrated that they had never run this test before). The last couple of times my TSH was really low, like 0.05 or so (but I felt great, no heart palpitations, etc), so they sent me to an endocrinologist. I don't hold much hope that the endocrinologist is going to be helpful because she wasn't really connecting with what I was telling her. In any case, she lowered my synthroid from 100 to 88 micrograms and I'll see them again in 6 months. I have never heard of having a dose lowered like that, especially since I've had this dose for over 4 years. I hope the endocrinologist ran all of the appropriate tests when she took my blood. Best wishes to you as you try to navigate this on your own...

[PeterPan]

Ok, so today is going on at the higher kelp dose, and I'm not liking how I feel. I talked it over with dd, and as I was going into the whole litany she's like HELLO TELL THAT TO THE DOC!  

So I think what I'm going to do is keep the appt (because it's 1/3 and probably awkward to cancel with office closures), TELL him all this stuff, and try to cut a deal. I think we could cut my kelp again and increase the naturethroid to 1 gr and I would not go hyper. And I'm going to ask him about running the sonogram, because I *think* he had already offered that. At the time I didn't realize why I would want it, but I think now I'm cool with it. I also happen to have a friend studying ultrasound tech, and she was saying they need victims for their class, hehe. So if it's expensive, I have that way to get it done too. 

I think he'll go for a decrease in kelp plus an increase in the naturethroid and rerunning labs. And I'm going to take in my list of the labs I want and push for them all exactly as I want. He's so agreeable, he might just do it. And if he doesn't, I can go through HealthCheckUSA and still get them done. But if I up the naturethroid and decrease the kelp and feel better than I did, that's actually a win. I just wasn't anticipating feeling *worse* on the kelp increase like I am. I felt better the first day, but now it's not right. Dd was noting my feet are swollen. I'll back off and get it back to my normal dose so we can sort it out. But that's why I'm thinking I could be having strain from my body trying to process the kelp and crank everything out and maybe decreasing it and increasing the meds would actually feel better. And I wasn't BAD on the 3/4 gr, just wasn't quite where I wanted to be. But if there is a dab of nodule or autoimmune stuff going on, I don't know how I'd even recognize that symptomatically, kwim?

[PeterPan]

1 hour ago, Martha in GA said:

Thanks for sharing your story, Peter Pan. I don't have anything helpful to add, but I always read the thyroid threads because I've been on thyroid meds for 20 years and none of my doctors seem to know anything, nor do they care, and have dosed solely on TSH (and even then, they have allowed my TSH to climb above 3 before taking me seriously that I was definitely feeling tired). A couple of years ago, I pushed for a full thyroid panel instead of just TSH, and they still didn't do T3 free, but they did determine that I have Hashimoto's (I was a little frustrated that they had never run this test before). The last couple of times my TSH was really low, like 0.05 or so (but I felt great, no heart palpitations, etc), so they sent me to an endocrinologist. I don't hold much hope that the endocrinologist is going to be helpful because she wasn't really connecting with what I was telling her. In any case, she lowered my synthroid from 100 to 88 micrograms and I'll see them again in 6 months. I have never heard of having a dose lowered like that, especially since I've had this dose for over 4 years. I hope the endocrinologist ran all of the appropriate tests when she took my blood. Best wishes to you as you try to navigate this on your own...

Oh dear, what a mess! I'd be hot to trot if I had a dose that was good and then the doc lowered it. (Famous last words...) I sure hope this doc doesn't do that. He had said he'd go below 2, and I'm below 2. 

So were you feeling well with that synthroid dose before she lowered it? I'm taking naturethroid.  At least my doc didn't leave me hanging 6 months either. He's been like let's do this 6 weeks, 8 weeks, retest, meet again. I hope you feel ok on your new dose!

[Laurie4b]

My advice would be to get a good endo. Mine always checks T3 & T4 as well as TSH. TSH tells you very little.  My endo works with me based on listening carefully to my input, but I am giving input based on how I feel, symptoms, etc. and I  listen to her recocmmendations. I do not have to be my own clinician. I wouldn't be comfortable with a doctor who was just checking TSH and treating you for thyroid. That is not best practice. 

Quote

I have enough energy to go walk 10-15 minutes or lift if I take breaks. I'm just not completely perfect like I want to be. My natural state is pretty ADHD (like I'm clinical, haha), and I'm not quite back to that. I'm also 42, turning 43 in a few months, and I don't know if that's hitting me. These people lifting weights are usually much younger than I am, lol. I may be a little unrealistic 

You are not being unrealistic on your goals for physical activity based on your age.  I am 20 years older than you are with thyroid issues and have more energy for physical activity than what you are describing. I can easily do 60 min of walking with 10 intervals of 3 min of jogging embedded in that 60 min and I can do a full weight lifting program (deadlifts, squats, push-ups, assisted pull ups or rows, etc.) without any more than the normal recommended rests between sets and if I'm doing a circuit, often with no rests.  I didn't not start exercising like that until my 50s, so it's not because I have always done it.  

I hope you can find a  doctor whom you don't have to ask to test your T3's and T4's and go for your goals. 

[PeterPan]

3 minutes ago, Laurie4b said:

My advice would be to get a good endo. Mine always checks T3 & T4 as well as TSH. TSH tells you very little.  My endo works with me based on listening carefully to my input, but I am giving input based on how I feel, symptoms, etc. and I  listen to her recocmmendations. I do not have to be my own clinician. I wouldn't be comfortable with a doctor who was just checking TSH and treating you for thyroid. That is not best practice. 

You are not being unrealistic on your goals for physical activity based on your age.  I am 20 years older than you are with thyroid issues and have more energy for physical activity than what you are describing. I can easily do 60 min of walking with 10 intervals of 3 min of jogging embedded in that 60 min and I can do a full weight lifting program (deadlifts, squats, push-ups, assisted pull ups or rows, etc.) without any more than the normal recommended rests between sets and if I'm doing a circuit, often with no rests.  I didn't not start exercising like that until my 50s, so it's not because I have always done it.  

I hope you can find a  doctor whom you don't have to ask to test your T3's and T4's and go for your goals. 

I hadn't thought about an endo, hmm. I had been without a doctor for 15+ years and I didn't really have a GP before that, just a doc I was seeing for the MCS and CFS who made me worse. This is new territory for me.

Yes, you're describing more than what I do. Now I WAS really zip zoom on that iodine BUT something was really wrong. I was swelling and felt off and kept gaining weight. That's why I finally dumped it and went to the doc. 

I'm not really hopeful I'd find an endo who was remarkably better anyway. I don't know. I had tried to use the referral lists from some of the manufacturers and lists you find online, and I kept hitting walls with people who were listed as using xyz but really just synthroid pushers. This guy LISTENS and he's been agreeable to almost anything I've said. Considering I had NO care before, it hasn't been all bad. I asked for Naturethroid, he did it. Asked for the bump, he did it. 

So how did you find an endo who was worth something? 

My plan right now is to keep the appt on 1/3, just because I won't know what could happen till I try. I'm going to take the kelp dose back down to where it was. I'm going to talk with him. If I can get a tweak I'm cool with, that would give me another 6-8 weeks before labs to see if I could find an endo. And maybe we can get this happy with just this guy. 

So what is the rest period you're using? The trainer at the Y had said 3-5 minutes, and I allow all that. The kids go back to back, boom. Me, I do better with some time to recover.

I'll go look at the lists, but I don't know that I'll find anyone. The pulmonologist I was using (just whatever the nurseline assigned me to) was half worthless, so it's not like some randomly chosen person is necessarily better. They can cost more and not work any harder.

[Laurie4b]

Found my endo on first crack from a respected teaching hospital. She's incredibly thoughtful , listens well, and I am definitely a partner in the treatment process, but I can relax into the role of patient rather than feeling like I need to come to her with solutions. 

Rest periods: Usually 60 seconds + or - if I am doing another set of the same exercise sequentially. I sometimes do a circuit on machines at the gym, and then I just walk to the next machine which will be using a different group of muscles, so no rest period needed. Or maybe I walk over to the fountain and get a drink.  Same with light weights or bodyweight for one side of the body. If I'm doing rows, for instance, on one side, then my left side is resting during the right side's set and vice versa.  Only when doing some lifting of significant amounts of iron, like deadlifting, do I leave more time. I tend to do deadlift sets one after the other and that is taxing but I have found  2-3 minutes is enough if I'm working at around 8-10 reps of the weight I'm using. If I were doing fewer lifts with more weight, I might wait longer.  The 3-5 min rest is what I do if I'm probing a new 1 rep max. 

A lot of my allocation of rest times is just paying attention to how my body is reacting.  If my heart rate is elevated I will wait for it to get down some before moving on. Same thing if I feel like I am reaching an outer limit of being able to keep good form while doing an exercise. It's something of an organic adjustment. My mantra at my age is "First of all, do no harm" so I don't ever push when I'm feeling off for any reason.  If something doesn't feel right or if my form slips, I stop that set right there. 

My main point is that I can hit my goals without my thyroid issues affecting my strength and stamina. It's not unrealistic to aim to do so.