Ok thyroid friends, I got new labs, need some help...

[PeterPan]

So to fill in the back story, my thyroid crashed 20 years ago while living under high tension lines post-partum. Like my armpit temps were 95.3 and I was a MESS. Went on armour (5 gr), then started with a nutritionist who put me on kelp, which I kinda ramped up over the years. Moved out of the lines, never really felt great but was gradually improving and just kinda plowed on. So a year and maybe 4 months ago I thought screw this, I'm getting a doctor. (I hadn't been in umpteen years except for UC and the pulmonologist.) He put me on naturethroid, which stabilized out my TSH to a nice happy (1.9? I forget) and allowed me to lose weight, feel great, haha. And since I was SO happy with my thyroid meds (super lower dose, only .75 gr, taken at night, way far away from food to improve absorption), I was like HEY LET'S GO OFF THE KELP!

That's where it got crazy. I went hypo two weeks, hyper, started decreasing the meds, was STILL hyper, so I finally went off totally. Also got a thyroid ultrasound btw, during that, because I had a slight goiter. Had benign cysts that at some point had been hyper, risk now 0, so that's all good I guess. And I felt fine for a while, even really great. Then it went down a little, and I was like well hyper to normal, deal with it.

We reran the bloodwork after 8 weeks of no meds (just TSH, cuz my doc is flexible but boring) and it was 2.52, not enough to justify going back on meds and not low enough to feel exactly like I wanted either. So I waited another 3 weeks, and in that time I've gone from feeling sorta tolerable (I mean, there's a reason 2.5 is your top end of what progressives are cool with) to really not tolerable. Like really, I'm not staying like this. My legs swell and hurt at night, my bowels are sluggish, my anxiety is back with a vengeance, I'm not losing weight even running 30 minutes a day 3X a week, and it's just generally unacceptable. 

So, drum roll, new labs. 

TSH=3.96 (no shock)

Free T3=2.9 (2.0-4.4)

Free T4= 1.14 (0.82-1.77)

TPO=13 (0-34) and a year ago it was 14 (0-34) meaning it actually went DOWN. 

Thyroglobulin antibody=<1 (range 0.0-0.9)

Reverse T3=22.4 (9.2-24.1)

So the Reverse T3 is the one that surprised me. I just got it to be thorough and because they threw it in for free with the antibodies and TSH and Frees. I don't really know what it is or what you do about it. I thought it was correlated to stress??? I mean, sure I've got a kid with ASD2 and drive to long therapy appointments and push too much, lol, but I don't really have a lot of stress right now.

So what is causing that? And is going back on the naturethroid (which I still have and can start immediately, TONIGHT) the correct treatment? Both T4 and T3 are low, so there's no reason to think I need a T3 only treatment, right? What is the appropriate approach to this reverse T3 gig?

I'm surprised on the antibodies btw. Gratefully obviously, as you'd rather they be low than high. But I honestly thought they'd go up.

Know anything here? I'm just excited to get back on the meds. I should feel a LOT better. The thing I won't ever know, by going on the meds, is how high up my TSH would go without them. I'm not willing to find out. I had been 5+ and 7+ over the years, and it's completely unacceptable to do that again. I was just waiting for it to get high enough that I was certain I had to go back on.

So is there anything I need to do for this Reverse T3 gig, or do I just go back on the naturethroid and all will be well?

Adding: The other thing I did in the 3 weeks was I took my selenium from 400mcg a day to 200mcg. I assume I'm getting some bump in conversion, maybe a decrease in TSH, from the selenium, but I didn't feel quite right at the higher dose. When I dropped it to 200mcg, I felt better. So the retest this week was at 200mcg selenium, which is where I want to stay. So whether it's that my TSH is flat going up or that it was the selenium, doesn't matter, because I am not willing to go back to the 400mcg.

I'll go pull up my old Free T4 numbers and compare, because I'm curious.

Oh this is wacky. My Free T4 was 1.25 (0.82-1.77) when my TSH was 6.490 before meds. So my TSH is lower now and my Free T4 is lower. But I had read TSH goes up very slowly. Anyways, that's kinda weird. So definitely have my argument to go back on meds, considering my numbers are lower AND I'm symptomatic AND my TSH is going up.

Edited January 3, 2020 by PeterPan

[ktgrok]

Are you still taking kelp?

[Mbelle]

I don't know about all the ins outs of why, but I always have D3, B12, insulin resistance and hormones checked too because they are things that get out of kilter for me and treated accordingly.  

 

[Ellie]

2 hours ago, PeterPan said:

So to fill in the back story, my thyroid crashed 20 years ago while living under high tension lines post-partum. Like my armpit temps were 95.3 and I was a MESS. Went on armour (5 gr), then started with a nutritionist who put me on kelp, which I kinda ramped up over the years. Moved out of the lines, never really felt great but was gradually improving and just kinda plowed on. So a year and maybe 4 months ago I thought screw this, I'm getting a doctor. (I hadn't been in umpteen years except for UC and the pulmonologist.) He put me on naturethroid, which stabilized out my TSH to a nice happy (1.9? I forget) and allowed me to lose weight, feel great, haha. And since I was SO happy with my thyroid meds (super lower dose, only .75 gr, taken at night, way far away from food to improve absorption), I was like HEY LET'S GO OFF THE KELP!

That's where it got crazy. I went hypo two weeks, hyper, started decreasing the meds, was STILL hyper, so I finally went off totally. Also got a thyroid ultrasound btw, during that, because I had a slight goiter. Had benign cysts that at some point had been hyper, risk now 0, so that's all good I guess. And I felt fine for a while, even really great. Then it went down a little, and I was like well hyper to normal, deal with it.

We reran the bloodwork after 8 weeks of no meds (just TSH, cuz my doc is flexible but boring) and it was 2.52, not enough to justify going back on meds and not low enough to feel exactly like I wanted either. So I waited another 3 weeks, and in that time I've gone from feeling sorta tolerable (I mean, there's a reason 2.5 is your top end of what progressives are cool with) to really not tolerable. Like really, I'm not staying like this. My legs swell and hurt at night, my bowels are sluggish, my anxiety is back with a vengeance, I'm not losing weight even running 30 minutes a day 3X a week, and it's just generally unacceptable. 

So, drum roll, new labs. 

TSH=3.96 (no shock)

Free T3=2.9 (2.0-4.4)

Free T4= 1.14 (0.82-1.77)

TPO=13 (0-34) and a year ago it was 14 (0-34) meaning it actually went DOWN. 

Thyroglobulin antibody=<1 (range 0.0-0.9)

Reverse T3=22.4 (9.2-24.1)

So the Reverse T3 is the one that surprised me. I just got it to be thorough and because they threw it in for free with the antibodies and TSH and Frees. I don't really know what it is or what you do about it. I thought it was correlated to stress??? I mean, sure I've got a kid with ASD2 and drive to long therapy appointments and push too much, lol, but I don't really have a lot of stress right now.

So what is causing that? And is going back on the naturethroid (which I still have and can start immediately, TONIGHT) the correct treatment? Both T4 and T3 are low, so there's no reason to think I need a T3 only treatment, right? What is the appropriate approach to this reverse T3 gig?

I'm surprised on the antibodies btw. Gratefully obviously, as you'd rather they be low than high. But I honestly thought they'd go up.

Know anything here? I'm just excited to get back on the meds. I should feel a LOT better. The thing I won't ever know, by going on the meds, is how high up my TSH would go without them. I'm not willing to find out. I had been 5+ and 7+ over the years, and it's completely unacceptable to do that again. I was just waiting for it to get high enough that I was certain I had to go back on.

So is there anything I need to do for this Reverse T3 gig, or do I just go back on the naturethroid and all will be well?

Adding: The other thing I did in the 3 weeks was I took my selenium from 400mcg a day to 200mcg. I assume I'm getting some bump in conversion, maybe a decrease in TSH, from the selenium, but I didn't feel quite right at the higher dose. When I dropped it to 200mcg, I felt better. So the retest this week was at 200mcg selenium, which is where I want to stay. So whether it's that my TSH is flat going up or that it was the selenium, doesn't matter, because I am not willing to go back to the 400mcg.

I'll go pull up my old Free T4 numbers and compare, because I'm curious.

Oh this is wacky. My Free T4 was 1.25 (0.82-1.77) when my TSH was 6.490 before meds. So my TSH is lower now and my Free T4 is lower. But I had read TSH goes up very slowly. Anyways, that's kinda weird. So definitely have my argument to go back on meds, considering my numbers are lower AND I'm symptomatic AND my TSH is going up.

Always take a natural desiccated thyroid such as Armour or Naturethroid. Your body wants both T3 and T4; IOW, you don't treat just one (i.e., a synthetic T3-only drug such as Levothyroxine).

Your TSH is high. Your Frees are low, but I can't figure the math so I don't know how low. 🙂 Free T3 should be in the upper fourth of your lab's ranges, Free T4 in the upper half. TSH should be in the lower fourth. In short, according to these labs, you need thyroid replacement therapy (NatureThroid, Armour, etc.). Most people feel best on three to five grains (around 60-65 units).

Here's an article about reverse T3.

[prairiewindmomma]

I think calling reverse T3 an indicator of your stress level is a misnomer.

Naturethroid is a “natural” product like Armour and has both t3 and t4. Go back on it. It’s clear your body needs it. 🙂

 

[Lawana]

I think the reverse T3 is telling you that you are not converting T4 to T3 well. Have you had it checked in the past? Since Selenium is needed to convert, I am wondering why you reduced your dose? 

I can tell when my reverse T3 is high because even if my free numbers look decent I feel like crap. I need Cytomel (T3 only) as well as Armour to feel half way decent. On Synthroid only, my rT3 was 40 something. Switching to Armour brought it down to 20s, then adding Cytomel brought it down to mid teens. 

[sweet2ndchance]

3 hours ago, Ellie said:

(i.e., a synthetic T3-only drug such as Levothyroxine).

Levothyroxine is a synthetic T4 and has the trade name Synthroid. Liothyronine, which has the trade name Cytomel, is synthetic T3.

[PeterPan]

6 hours ago, Mbelle said:

I don't know about all the ins outs of why, but I always have D3, B12, insulin resistance and hormones checked too because they are things that get out of kilter for me and treated accordingly.  

 

Ooo, good points. We've been running D, B12, and Hba1c, yes, definitely. All beautiful. Like seriously. He offered to run hormones, but even they got so good on the thyroid meds that I wasn't worried about it. It was very obvious that my cycles began getting (  ) again as the TSH went back up. I expect that to tidy up when I get back on the meds.

6 hours ago, Ellie said:

Here's an article about reverse T3.

Thanks!

6 hours ago, prairiewindmomma said:

I think calling reverse T3 an indicator of your stress level is a misnomer.

Naturethroid is a “natural” product like Armour and has both t3 and t4. Go back on it. It’s clear your body needs it. 🙂

 

Yeah, looking at that article Ellie linked, I think my body could still be in "let's clear out from when it was hyper" mode (still clearing even though levels have dropped) or that my liver isn't too hot (often the case, since I used to be very chemically sensitive). But it looks like from that article going back on the meds is the right thing, and it's what I'm planning to do TONIGHT, in just a few hours. Glory. So ready. 

5 hours ago, Lawana said:

I think the reverse T3 is telling you that you are not converting T4 to T3 well. Have you had it checked in the past? Since Selenium is needed to convert, I am wondering why you reduced your dose? 

I can tell when my reverse T3 is high because even if my free numbers look decent I feel like crap. I need Cytomel (T3 only) as well as Armour to feel half way decent. On Synthroid only, my rT3 was 40 something. Switching to Armour brought it down to 20s, then adding Cytomel brought it down to mid teens. 

Ooo interesting. Well let's see what happens. It sounds like I should re-run these more complete labs after I've been on the meds a good number of weeks and see where we're at. My doc, like I said, just runs TSH if I ask him, which really doesn't give me enough info to fine-tune. So that's a good point to track it and see how it goes down. He's so congenial, I'll bet if my T4 was good and I just wanted to use T3 to get the rest of the way, he'd probably do it for me, so long as I came in with the data to show why. 

So just to be clear, how did you decide you were at the right Armour dose and that it was time to bring in Cytomel? I almost think I did something like that 15 years ago, but that was so long ago, lol. No that would have been closer to 19 years ago, lol. Anyways, then it was all the excipients and fillers that were the issue. The naturethroid is beautiful for having nothing too toxic to give me crazy headaches. If I can feel well on the straight naturethroid, that's easier for me. I just made a mess and upset everything by dumping the kelp, and it's taking a while to get it settled back out. 

At 200mcg/day selenium I'm really good. At 400mcg my energy is a *bit* higher but I have this sort of foggy unpleasantness. I feel noticeably better on the 200 so I'm not wanting to go back up to 400. Now I've read that symptoms at the higher dose can indicate you don't have enough iodine in your system for the selenium to do it's gig. But again, that's back into a rat race. I couldn't get euthyroid no matter how much I put in. So now I only take the US RDA of iodine as contained in a general B/multi I take daily (Empower by FoodForm). It's food source, doesn't bother me with my MTHFR/COMT defects.

4 hours ago, Manager Mom said:

Just a note about NatureThroid:  I was on it for years and last year they had a "supply" issue so my doc switched me to Armour.  I asked him a few weeks ago about NT because Armour costs me more money.  He said he has gotten several complaints from his patients with the new supply of NT so he suspects they've changed their formula.  You can google search the issues of it not working as well and some kind of urine smell from the pills.  

Also, treat to symptoms.  I tried a higher dose to see if I could perk up a little bit more and felt very anxious even though my labs looked great.  It took me a few miserable months to figure that out because I do have some stressful people in my life so I attributed it to them.  I was wrong.  I felt better the day I dropped back down and it hasn't come back.

Oh interesting. Guess we'll see. I have some old and just filled new, so we'll just see. 

Yeah, that was why I went off the meds temporarily. I was clearly, clearly hyperthyroid, two times in a row on testing, and I was having symptoms. I needed to let that pass, let my body decide what it was doing. This is where it's landing, so I'm cool being back on the meds. I clearly liked them, so I'm fine with it. My biggest worry was what I was going to do if it WASN'T a thyroid explanation, lol.

 

[Ellie]

4 hours ago, sweet2ndchance said:

Levothyroxine is a synthetic T4 and has the trade name Synthroid. Liothyronine, which has the trade name Cytomel, is synthetic T3.

I know that.

[bethben]

I have been researching and learning about iodine a lot lately.  Kelp is not a good source of iodine because our oceans are toxic and therefore, kelp absorbing from the oceans is toxic.  If you do want to start taking iodine again, look here:  https://stopthethyroidmadness.com/iodine12345/.  It also talks about vitamins that should be taken along with iodine in order to counteract the side effects of detox.  I have also learned that the only supplement you want to test for is selenium. That level could go to high easily and they suggest testing your levels before starting that one.  Supplementing with iodine will also make your TSH go high temporarily.  My example is a bottle of lotion that has that crust on the top.  You squeeze the bottle and initially, a ton of lotion comes out all at once.  When there is an increase of iodine, the TSH pathways increase to get the thyroid to suck as much iodine as it can.  Once it normalizes and realizes there's a consistent path, it calms down.  This site also has a lot of suggestions as to what your levels should be: https://stopthethyroidmadness.com/lab-values/.  

 

Overall, this book is good:  https://www.amazon.com/Iodine-Need-Cant-Live-Without/dp/B01AU40LIQ/ref=sr_1_2?keywords=iodine+brownstein&qid=1581436330&sr=8-2  and this one:  https://www.amazon.com/Iodine-Crisis-What-About-Wreck/dp/098603200X/ref=pd_bxgy_2/137-2201066-3885334?_encoding=UTF8&pd_rd_i=098603200X&pd_rd_r=4f774a44-9f11-4daf-a967-6a2daee46fce&pd_rd_w=nVlug&pd_rd_wg=LQ2j6&pf_rd_p=fd08095f-55ff-4a15-9b49-4a1a719225a9&pf_rd_r=QKA4V5HQR91KKM12EX97&psc=1&refRID=QKA4V5HQR91KKM12EX97

[PeterPan]

30 minutes ago, bethben said:

If you do want to start taking iodine again

Yeah I was on iodine, in one way or another, for 16+ years. At this point, I'm taking the RDA for iodine in my multivitamin that is food based, and that's it. It's a consistent, small, daily amount.  I feel better and I think it's less strain for my body to process. It took a long time to wash the excess iodine that had built up in my system. And now we know we can't put enough iodine in my system to keep me euthyroid anyway, so I might as well just pick a consistent amount of iodine and take meds to make up the rest. That's why I picked the RDA, because it's something I can do consistently. 

I'll be rerunning labs in a week, so we'll see how the new values are. My energy isn't quite as good as it needs to be, so I'm thinking we'll need the meds to go up a dose. However I did lose some weight with the extra walking on vacation, so that's a good sign, showing that the meds are on the right track. Just gotta tweak and fine tune at this point. 

So just to back up here. I had been taking a lot of kelp and had tried iodine supplements. I'm currently on the dose I had been on when I was on the kelp, etc as well, and I probably just need a step or two to fine tune. So in reality the kelp, iodine, etc. wasn't making a huge difference relative to the *expense*. If I can take $7 extra of thyroid meds a month and ditch $80 of supplements, that's a good tradeoff. And I feel better in a way that is subtle. 

So we'll see. When I've tweaked the meds as far as we can get them with the doctor and as much as he'll fine tune then I'm left with supplements. But I'm not adding anything for supplements till I've pushed the thyroid meds as much as I can to get them to do what they can.