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New Thyroid Results -- help interpreting?

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Posted 7/28/2016 7:31 PM (GMT 0)
Backstory... I got my thyroid levels tested around March and realized that, after assuming I was fine for about a year, I was hypothyroid again. I was taking 50 mcg levothyroxine, 20 mcg bioidentical T3, and 1.5 grains of NatureThroid. My TSH was below range but my T3 was 1.7 (2.0-4.4) and my T4 was around I think .9 (.82-1.77).

I advocated for an increase of my NatureThoid and 6 weeks later my T3 had gone up to 1.8.

My doctor suggested we call that good, but I advocated for further increase of NatureThroid.

At that point I started regularly increasing my NatureThroid by small intervals. I am now up to 2.5 grains of NatureThroid (I'm still on 50 mcg levothyroxine and 20 mcg T3).

I *think* I feel improvement. I still feel bad, but I'm not sure if it's hypothyroidism or just lyme and esptein barr now. I feel like my digestion has gotten better (I can eat more foods now) and my metabolism may be improved. I seem to have lost my periods and look pretty tired. My pulse is still pretty low.. like 56 bpm.

I just got new labs and now my numbers are:

T4 1.36 (.82-1.77)
T3 2.8 (2.0-4.4)
TSH .006 (.45-4.5)

Before I talk to my doctor about it, I wanted to ask... Have I arrived? Do you think I need further dose adjustment?
Posted 7/28/2016 7:39 PM (GMT 0)
Hi Marigold. You could stand another increase, depending on when you last increased. It takes. 4- 6 weeks or so to see a change in your numbers. Your T3 and T4 should be mid-range. You are just about there with the T4. I will tell you these critters ((EBV, Lyme) all just tax the thyroid. Many need thyroid med increases while battling these things. I just recently increased mine. Did bw yesterday so can't wait to see what it says. Once these infections took over, my thyroid meds just perished like water.
Posted 7/28/2016 7:50 PM (GMT 0)
Hi Krimpet! Thanks for your thoughts!

I waited 7 weeks before taking these labs, so I think they're pretty accurate. I was wondering, too, if I could maybe stand one more increase. I don't think my doctor is going to be too keen on it... When we discussed my dosages last month he said "That's quite a lot of thyroid hormone you're taking young lady!" It was sort of funny, how he got paternal like that, but also made me nervous that I might be taking too much. He's pretty open to my suggestions, though, so he might be willing to entertain another increase. I don't like the idea of becoming more and more dependent on thyroid replacement, but I think you're right about the thyroid being so taxed by the infections, and so maybe there's not really a good alternative.
Posted 7/28/2016 7:55 PM (GMT 0)
I think that once we get these viral and bacteria loads down we dont need as much thyroid medicine. But right now, it's all we've got.
Now if you are feeling better, you could hold there and wait another 4 weeks to see if it goes up anymore and then decide if an adjustment is in order.
Posted 7/28/2016 8:43 PM (GMT 0)
Most thyroid patients feel best when they are in the upper 1/3 of the ranges, but go by any symptoms that you can track back to your thyroid.
www.stopthethyroidmadness.com/lab-values/
Posted 7/28/2016 11:42 PM (GMT 0)
I agree with Traveler about the "feel best" levels for thyroid patients.

To give you an example, my "feel best levels" are:

FT4 1.7 (.82-1.77)
FT3 3.8 (2.0-4.4)

On a "good" day, my TSH is .005

I take synthetics and my doses when I started Lyme treatment were 125mcg T4 and 10mcg T3.

I needed dose increases every month until most recently. I got up to doses as high as alternating 162/175mcg T4 and 17.5mcg T3.

I now take 150mcg T4 and am still taking 17.5mcg T3.

These infections do a number on thyroid function and it's possible our meds/supplements interfere as well.

Thankfully, my thyroid doctor understands this and agreed to the doses I knew I needed to have.

If you were a diabetic and your blood sugar kept going too high, you have to know you would get an increase in your meds and nobody would be worried about the size of your dose.

It's your body and your levels aren't even similar to what healthy person would have. It's entirely reasonable to point out to the doctor that your FT4/FT3 levels have "room" to increase and still fall within the normal range. To me, as long as you promise to get labs done in 4 wks. after you start your dose increase (and do so), the doctor should be satisfied.

If not, maybe you can find another doctor to manage your thyroid.
Posted 7/29/2016 12:34 PM (GMT 0)
Me again ;)

I remembered last night that you might be interested to read what Dr. Burrascano has to say about the effects these infections have on thyroid function. Please read the 3rd paragraph on page 6 of his "Diagnostic Hints and Treatment Guidelines" here:

www.ilads.org/lyme/B_guidelines_12_17_08.pdf

"Activation of the inflammatory cascade has been implicated in blockade of cellular hormone receptors. One example of this is insulin resistance; clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels. These may partly account for the dyslipidemia and weight gain that is noted in 80% of chronic Lyme patients. In addition to measuring free T3 and T4 levels,check basal A.M. body temperatures. If hypothyroidism is found, you may need to treat with both T3 and T4 preparations until blood levels of both are normalized"

To clarify, "normalized" T3/T4 levels doesn't mean just getting the T3/T4 levels to fall within the normal range....it means achieving the types of levels healthy people have (which would then be considered normal).

If our thyroid hormone receptors are blockaded, it makes sense that we require increasing doses of meds to achieve healthy thyroid levels.

Unhealthy people are the ones getting blood work done most frequently. Therefore, lab ranges are skewed towards unhealthy levels.

With this in mind, it makes sense that healthy people have FT3/FT4 levels in the upper 1/3 of the range.

I can provide only one example of this - my 88 y/o mother who doesn't have thyroid disease. While her doctor never checks her FT3 level (probably because she doesn't have issues), her FT4 level consistently comes back at 1.6 (.82-1.77).

I think most of us here are younger than 88 ;)
Posted 7/29/2016 4:12 PM (GMT 0)
Thanks everyone for the thoughts!

cd, I was hoping I'd hear from you, you were so helpful to me when I was advocating for my last dosage increase.

I miswrote.. I'm actually on 3.5 grains of NatureThroid now. So quite a lot. But I guess that doesn't change anything? If I need more, I need more?

The past 2 days I've been taking my temperature and pulse... My temperature seems to fluctuate between 96.9 and 97.9 (now I realize why when I feel like I have a super high fever, my temperature is only like 100!). My pulse is coming back between 63 and 66. So these are additional signs of hypothyroidism, right?

I'm thinking I may send this information to my doctor before he makes a recommendation of whether I increase or stay at these levels. Maybe he'd be more receptive if I suggest an increase before he suggests we don't increase.
Posted 7/29/2016 4:33 PM (GMT 0)
I'm not CD, but yes, those are still signs of being hypothyroid. And, yes, if your body requires more, then your doc needs to allow you to raise your dose - or find one that will.

I too feel like I'm running a fever still many days, but between Babesia and low thyroid, my temps are never high.
Posted 7/29/2016 7:24 PM (GMT 0)
Traveler, I think I've told you that you're basically my hero.

Does babesia lower body temperature?

I appreciate the thoughts so much.. I find myself in so much doubt about how to proceed with this illness sometimes... With all the controversy around lyme and thyroid treatment.. And sometimes needing more medication can feel like getting worse, not better. It's so helpful to hear from you guys, who I trust so much, that I'm still hypothyroid.

I emailed my doctor with a list of my hypothyroid indicators and he wrote right back to increase my Naturethroid by another .5 grains. I'm surprised just because back when my T3 was still 1.8 he suggested we hold there. Now he seems much more willing to suggest increases. Anyway, I'm so glad that he supports it, too. Consensus! If this could help me feel better I'd be so excited.

Does it seem like this next .5 Naturethroid increase could be enough to get me to the right levels? Or do you suspect I might need further increases to optimize?
Posted 7/29/2016 7:53 PM (GMT 0)
Ha ha ha!! I think you must have me mixed up with someone else!! I'm just a fellow Lyme warrior!! Like you.

No, Babesia will generally produce fevers, or sweats without a fever.

YAY!! about your doc increasing your dose again!! That's wonderful! I couldn't get my thyroid doc to raise my doses for nothing!! I finally had to fire her so that I could go on my own (VERY nerve wracking!) and go on to heal - and it's working!!!

It's really hard to know how high a dose a person might need. I need high doses, even though my blood levels aren't too far off because my body doesn't utilize the available hormones well, so my blood has to be flooded with them. If you are like me, you may need to raise quite a few more times, but only trial and error will tell you that. Sorry, I so wish there were better answers, but each and every body is so very unique that there's really no other way.
Posted 7/29/2016 7:54 PM (GMT 0)
Hi Marigold,

I'm new to Lyme, but the thyroid thing is old hat for me. I go more by a feel best as well. For me, I like a higher T3, a mid T4 and a Mid TSH. When my TSH gets below 1, then I get severe panic attacks and my menstrual cycle gets really wacky. I ended up switching to Armor with daily iodine (liquid form) and I feel the best. Synthroid is horrible for me. My doctor usually has me increase my iodine and armor on opposite schedules (like one now and the other 3 weeks later) and then test 4 weeks after the last increase. I've gone HYPERthyroid a couple of times because of the Hashimoto's and I actually feel way worse when I'm hyper than when I'm hypo. I'm hoping I can get Lyme & Co under control and get my thyroid back on track as well. Keep us updated on how it's doing. What range you feel good at. =)
Posted 7/29/2016 8:09 PM (GMT 0)
Trav, I'm so grateful for a fellow (and super knowledgeable) lyme warrior :) Yeah I was really happy... danced a little.. when I got the email to increase lol

Jingles, ever since I was 20 I've have bouts of amenorrhea. It was kind of the first indicator that something was amiss. Lost my periods again in the past few months, around the same time I started increasing my thyroid hormone, sending my TSH lower. I wonder if that's why. My doctor seems to think the amenorrhea is a sign of hypothyroidism and that my periods will come back when I get my T3 and T4 high enough. Or maybe it's just the change of levels that's causing it? Anyway, I hope I'm not messing anything up by suppressing my TSH so much. But there's no doubt I've started coming back to life since the dosage increases in March, when my T3 was at 1.7. I wasn't able to hardly eat at all and I was super lethargic and puffy face. I'm glad those things have gotten bit better. Thanks for the thoughts!!... I'll keep trying to go by feel.
Posted 7/29/2016 8:23 PM (GMT 0)
I've found that's it's WAY easier to come back from Hyper than from Hypo. Do you have Hashimoto's? I'm at a reproductive endocrinologist now and I've been diagnosed with Premature Ovarian Failure because of all the thyroid issues. It's so crazy how everything works in conjunction...
Posted 7/29/2016 8:39 PM (GMT 0)
Marigold,

I'm very happy your doctor agreed to a dose increase! There's a chance him seeing your issues in black and white helped with that.

There's no way of knowing what a dose increase will accomplish. It's all wait and see.

Just for the record, it takes 3-4 wks. for the FT4/FT3 levels to stabilize after a dose increase (this information was provided to me by Elaine Moore, medical technologist and author of "Graves' Disease - a Practical Guide" among other books (including the one on LDN)

It takes 8 wks. for TSH to stabilize but we don't care about that ;)


marigold33 said...
Anyway, I hope I'm not messing anything up by suppressing my TSH so much

Please know that TSH has no physiological implications. It's similar in concept to FSH, the test we have run to see if we are in menopause. Both tests are basically status indicators.

It's the FT4/FT3 levels that can cause symptoms.

Doctors prescribing any type of T3 should know that TSH is often suppressed in people taking optimal doses.

And, while I agree about dosing based upon how we feel, I think most of us don't know what our FT4/FT3 levels were when we were healthy.

That's why it makes sense to "try on" the types of levels healthy people have.....and see if symptoms dissipate. Tiny dose adjustments from that point forward could be trialed to address any possible residual symptoms.

Good luck!
Posted 7/29/2016 9:22 PM (GMT 0)

cd3764 said...
Please know that TSH has no physiological implications. It's similar in concept to FSH, the test we have run to see if we are in menopause. Both tests are basically status indicators.

It's the FT4/FT3 levels that can cause symptoms.

cd, This is the first I've heard of this and doctors have been messing with my thyroid hormone for years. Is there a link you could point me to for further reading. It's very fascinating.
Posted 7/29/2016 11:20 PM (GMT 0)

Jingles1234 said...

cd3764 said...
Please know that TSH has no physiological implications. It's similar in concept to FSH, the test we have run to see if we are in menopause. Both tests are basically status indicators.

It's the FT4/FT3 levels that can cause symptoms.

cd, This is the first I've heard of this and doctors have been messing with my thyroid hormone for years. Is there a link you could point me to for further reading. It's very fascinating.

Jingles,

The site I'm linking below contains evidence-based information with footnotes to supporting medical references - hope it helps.

www.tiredthyroid.com/tsh.html
Posted 7/29/2016 11:47 PM (GMT 0)
To anyone interested in thyroid....

Some of you may be aware of Elaine Moore, author of "Graves' Disease - A Practical Guide" and highly respected in the thyroid world.

She also wrote "The Promise of Low-Dose Naltrexone (LDN) Therapy" and "Cannibis Extracts in Medicine" along with many other health-related books and articles.

Elaine maintains a Q&A Forum on her website. I've saved links to some of the posts on there. Here are a few links that address the concepts I've shared on this thread:

elaine-moore.com/Forums/ActiveForums/tabid/323/aft/2648/Default.aspx

elaine-moore.com/Forums/ActiveForums/tabid/323/aft/2489/Default.aspx

elaine-moore.com/Forums/ActiveForums/tabid/323/aft/2050/Default.aspx
Posted 7/29/2016 11:50 PM (GMT 0)
Oh Marigold...

I think it was on the stopthethyroidmadness site that I read some people require as much as 5 grains.

The size of the dose truly doesn't matter - it's what gets to your cells that count. Since we can't truly measure *that*, the next best thing is the blood levels of thyroid hormone that are usable by the body (Free T4/T3).
Posted 7/30/2016 3:16 PM (GMT 0)
cd, thanks so much for all the great information.

So I'm up to 4 grains now... and also still taking the 50 mcg levothyroxine and 20 mcg bioidentical t3. So I guess I'm like those 5 grain people when it comes down to it. Trying to trust that for some reason, this is the amount of thyroid supplement I need right now.

I'm curious, do you think that my needing so much more thyroid supplement than I did for the first couple years of treatment means that my body is struggling more with lyme? I hope that question makes sense. I think I always imagined that at this point in my lyme treatment I might be able to start coming off the thyroid supplement, so I'm not sure whether to feel a bit discouraged that the opposite is happening.
Posted 7/30/2016 3:31 PM (GMT 0)
Inflammation is often a factor in absorption and conversion, so yes, having Lyme can make you need more thyroid medication in order to get to the cellular level required to feel well. Sometimes the thyroid isn't able to function as great as pre-Lyme, so you still may require some support, but possibly not as much as you are taking now.
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