any thyroid knowledgable folks?

I'm wondering if anyone who knows a bit about treating hypothyroidism could offer some advice...

The very first thing I was diagnosed with, many years ago, was hypothyroidism... Though my TSH wasn't elevated, and I don't have Hashimoto's or any autoimmune thyroid issues, my T4 and especially T3 were very low below range... So my physician put me on levothyroxine... Then I went to a naturopath for help strengthening my adrenals and he added Nature Thyroid... Then I went to a fatigue specialist who added bioidentical T3.

Now my daily thyroid treatment is
levothyroxine 50 mpg
nature thyroid 1.5 grains
t3 20 mcg

It's been that way for years.

Once I finally got diagnosed with Lyme it made more sense why my T3 and T4 levels were so low, and that maybe even the thyroid hormone that I did have wasn't being effectively utilized on a cellular level.

None of the lyme doctors I've worked with have wanted to touch the thyroid treatment... They sort of think I have achieved some sort of working stability and it's better to focus on the Lyme. But my hypothyroidism treatment is so haphazard I wonder if it's truly optimal. My insurance doesn't cover any endocrinologists, least of all any that are open minded enough to treat hypothyroidism that doesn't present with elevated TSH. I've considered investing in a trip to Holtorf Medical Center, because I think they are super savvy about this, but found out it would cost more than $1,000. I'm wondering if I can somehow get treated for hypothyroidism via my lyme doctor. He's very receptive to my ideas and suggestions. I'm just wondering, what tests would be good to ask for? I know TSH, T3, T4, but there are others, too, right? Reverse T3 or something? Some tests that determine how much of the T4 is getting properly converted? It feels like it would be ideal to at least only be taking 2 different kinds of thyroid replacement rather than the 3.

I have an appointment with my lyme doctor tomorrow, and if there's a way that I could deal with this via him, that would be very helpful financially.

Thanks so much for any thoughts!!

Thanks Girlie!!

It's been a while since I got tests done... I will try to find the last ones...

I do recall that my TSH was super low, basically my thyroid is being suppressed by the thyroid replacement I'm taking. My thyroid doctor wasn't concerned about the low TSH, since my dosages were determined clinically... I was in very bad shape, couldn't walk a half block to the corner store, and my thyroid replacement dosages had been gradually increased until I came to life again. My T3 and T4 were in range, I believe mid-range.

I don't like the idea of being on medication so I tried to wean off of some of the Nature Thyroid last summer and just got super fatigued again... So that makes me think I'm not being over-treated, despite the low TSH. But I don't know.

I just wonder if it could all be better organized/optimized.

Just getting caught up to speed this morning....

Girlie gave you some great advice!

Please understand that, despite what mainstream doctors might say, TSH is not a reliable indicator of thyroid status....at all.

You see, TSH is a pituitary hormone. Looking at TSH to gauge thyroid status is like looking at the odometer in attempts at guessing at how much gas is in your tank.

The levels of thyroid hormone that are available for use by the body are the ones to watch: Free T4 and Free T3.

Your Free T4 level will tell you whether or not your thyroid is making enough T4 storage hormone for your body to use to convert to T3, the active hormone.

Your Free T3 level will tell you whether or not your body is converting enough T4 into T3.

It is unusual to take 3 different thyroid meds - especially Nature Throid *and* T3 since Nature Throid contains T3 (and T4).

It's very common to need to take T4 (levothyroxine) along with Nature Throid.

Reason being: Nature Throid is made from porcine thyroid that has a larger proportion of T3 than T4 compared to human thyroid.

Therefore, people taking desiccated thyroid products such as Nature Throid will have Free T3 levels that are proportionately higher in the range than their Free T4 levels.

Most people need both levels near the high ends of their ranges to be free from thyroid symptoms....that's where the addition of levothyroxine (T4) can come in.

All of that said, you'd need to see what your Free T4 and Free T3 levels are currently and then figure out your doses from there.

I am going to show you how to figure out just how much hormone you are getting from your current meds regimen. Firstly, take a peek at the NatureThroid site I'm linking below and you'll see that 1 grain contains 38mcg T4 and 9mcg T3:

getrealthyroid.com/the-real-facts/conversion-guide/

(you can basically ignore the conversion guide because that's to help people switching from T4-only meds such as Synthroid/Levoxyl/levothyroxine) and it does not address the common need for additional T4)

Anyway, now that you know how much actual hormone is in one grain of NatureThroid, you can see that 1.5 grains provides 57.75mcg T4 and 14.5mcg T3.

If you add in your 50mcg levothyroxine along with the 20mcg T3 you take, your total thyroid hormone intake is 107.75mcg T4 and 34.5mcg T3.

Once you get Free T4 and Free T3 testing done, you'll be able to figure out what you need.

If your FreeT4 level isn't near the high end of the range, you'd need more T4

If your Free T3 level isn't near the high end of its range, you'd need more T3.

Just what med(s) gets adjusted depends on those levels....it might take a few dose adjustments to optimize your levels.

And, you could very well find yourself not needing T3 anymore and just increasing your NatureThroid....

I will gladly help you figure things out once you get some thyroid labs done.

Happy to help.

There's really no "higher quality" anything in regards to thyroid meds - it's all about the individual's response.

I can tell you that many people swear by desiccated thyroid products such as NatureThroid and I do see merit in taking something like that.

However, I am very much aware of the fact that I and many others need a higher Free T4 level than what taking NatureThroid alone can provide.

Therefore, I see merit in continuing with levothyroxine (T4) as well.

T3 is redundant in your case since you're already getting T3 in your Nature Throid.

Still, you'd need to adjust your NatureThroid dose to compensate for the elimination of T3.

When switching thyroid meds around, it's always best to start a bit lower.

Since you'd be "losing" 20mg of T3 by ditching your T3, I suggest upping your NatureThroid to 2.5 grains (an increase of 1 grain that will provide 38mcg T4 and 12.rmcg T3)

And, since the NatureThroid increase obviously also means 38mcg more T4, I think you need to look at your FreeT4 level before deciding what to do about your levothyroxine dose.

Since your current regimen is "T3" heavy, I suspect your Free T4 level might be on the low side. Still, rather than continuing with your 50mcg levothyroxine, you might want to back down to 25mcg (so as not to shock your body) when increasing the NatureThroid

And, more likely than not, it will take several dose adjustments before your levels are optimized. That's just how it goes.

Most people need seasonal dose adjustments at the absolute minimum. My thyroid has been sooo erratic since I've been dealing with Lyme - I've needed monthly dose adjustments all along.

That said, I wouldn't be in a rush to have anything compounded made. Instead, maybe ask your LLMD for 90 day prescriptions for 1/2 grain Nature Throid tabs in sufficient quantity.....and 25mcg levothyroxine tabs in sufficient quantity.

This way, you can get labs every 3-4 wks. and adjust your doses without having to get new prescriptions. Wash, rinse, repeat until your Free T4 and FreeT3 levels are in the upper quarter of their respective ranges.

Once that happens, it makes sense to "wear" those levels for awhile and see if those final symptoms dissipate. If they stayed gone, get labs again and note those levels - more likely than not, you've identified levels that fall within your own personal "comfort zone".

I'd continue to get regular labs for at least a year to see how stable your thyroid remains...dose adjustments geared towards maintaining your "comfort zone" levels are what will keep you free from thyroid symptoms. You need to not only identify those "comfort zone" levels but see how long your body can maintain them before you need a dose adjustment.

Sorry if TMI but I wanted to put it out there....it's a lot to think about but will become second nature to you.

I will gladly help you brainstorm your labs when you get them.

Good luck with it all!

Bump for ShmilyKate

marigold,

I actually started my thyroid disease journey with Graves'-induced hyperthyroidism - a self-limiting autoimmune disorder.

I went into remission from Graves' after taking anti-thyroid drugs for 2 years.....and I then joined the 20% of Graves' patients who go hypo after remission. That happened back in 2010.

My Graves' antibodies suppress TSH. This means my TSH is often something like <.005. On a "good" day, it's .006.

It was very difficult to find a doctor that recognized my hypothyroidism in light of my suppressed TSH - endos wanted to put me back on anti-thyroid drugs.

I found an internist that understood Graves' and I've been working with her ever since.

I don't know when you developed hypothyroidism but, if it happened after you got infected, there is the cause.

There are other causes for hypothyroidism other than autoimmune and a thyroid-savvy doctor diagnoses clinically (sound familiar? ;)

Your suspicion rings true for me. I've continually needed dose increases throughout my Lyme journey. I know the bacteria block thyroid hormone receptors. Also, we're dealing with more inflammation and that impacts thyroid function as well.

Sorry but, after suffering needlessly under the care of 3 different endos, I don't care what any of them think....my GP knows I refuse to see an endo for thyroid. She and I know more about thyroid than the 3 I saw.

I think you now understand why low Free T4 and Free T3 levels just don't work for most people. Healthy people have upper range Free T4/T3 levels.

And TSH is truly meaningless.....look at my situation.

Hyper/hypo symptoms overlap. That's why we always need labs to guide dose adjustments.

If the labs you just shared are typical for you, I think I know why you never got the much-needed dose increases you should have: your TSH is "normal".

Unfortunately, many doctors consider their job "done" when TSH falls within the normal range and they leave patients horribly hypothyroid. I'm sorry this seems to be the case for you :(

Clearly, both your Free T4 and Free T3 levels need a LOT of help (so sorry)

You'll be well-served if you can remember the types of levels healthy people have and these are the only levels that matter:

Free T4 1.6 or higher --- your level: .85 (.82-1.77)
Free T3 3.8 or higher --- your level: 1.7 (2.0-4.4)

Then, think about what you're taking:
Levothyroxine T4
bioidentical T3
NatureThroid (T4 & T3)

By looking at your levels and comparing those levels to what a healthy person would have, you can see which level(s) needs the most help....and then you adjust the dose of whichever med can accomplish the task.

Since both your Free T4 and Free T3 levels need help, I think a NatureThroid dose increase makes the most sense because it contains both T4 & T3.

Since our bodies can process just so much new hormone at any given time and you need more T4 as well as T3, I'd be asking for a .5 grain NatureThroid dose increase.

You need to be on a new dose for 3 wks. to reflect whatever Free T4/T3 levels that dose accomplished.

I hope you'll get labs again within that timeframe and I'm sure you'll need another dose increase. Wash/rinse/repeat until those levels are much higher.

(for whatever it's worth, 25mcg is an insanely large dose increase for T3 - it packs as much "punch" as 100mcg levothyroxine)

Hope what I've shared makes sense. If anything isn't clear, please let me know and I will do my best to clarify.

5mcg is a reasonable dose increase for T3.

When are you scheduled for labs again?

And, sorry to tell you that I doubt you'll be feeling all that much better. It's not until our levels get closer to the types of levels healthy people have that *some* symptoms might dissipate.

It's not until *after* we've been "wearing" those healthy levels that the final symptoms dissipate.

Thyroid levels are like shoe sizes - we each fit into only one size. If we have too-low Free T4 and/or too low Free T3 levels, that's like trying to squeeze into a too-small shoe size. We're certainly not going to feel comfortable.

And, even if we try on another size, if it's still not the right one, we're still not going to feel good wearing that size....maybe less uncomfortable (as thyroid levels get closer to healthy) but, certainly not good - sorry.

That is why I'm suggesting that you get labs/appropriate dose adjustments every 3 wks. Why prolong the agony?

Just so you know, both the Free T4 *and* Free T3 levels have to be at healthy places for symptoms to finally dissipate.

One without the other is no good. Same as if you have your right shoe in your correct size but your left shoe is too small....you're not going to feel as well as you will if both shoes are the correct size.

marigold33 - this is kinda off topic - as this thread is about your thyroid....but your cortisol test shows your total cortisol is high.
Did your Dr. discuss that with you?

It might be worth doing a 4X day saliva cortisol test and see if it's high all day long...or?

My total cortisol was high when we were trying to figure out what was wrong with me.
I did the blood test first...and then the 24 hour total urine cortisol. My cortisol was quite high - I think more than double the high end of the range.
I also had the ACTH hormone level tested...and it was in range. It checks for a pituitary issue. (something about it stimulating the production of cortisol in the pituitary gland)

My Dr. ordered a CT of my adrenals...and the Endocrinologist had me do a cortisol suppression test.
Everything came back normal.
But, I was freaked out by that time...and was worried about a pituitary gland tumor. (I know - extreme over-reaction) - but I was feeling so awful..I really thought there was something very serious wrong with me. So, I paid for an mri of my pituitary gland to check it.

Three months later I requested another 24 hour urine cortisol test..and it was in range.

I remember reading about how to lower cortisol levels at night - I think one supplement was phosphatidyl serine...gosh I can't remember what else. If your levels are high at night...you won't sleep well.

The benefits of the saliva test is you will see the levels throughout the day.
You want to have a higher level in the morning...and lower in later evening before bed.
Yours is high in the morning...but higher than range...not sure what that means...but it would be a good idea to check the rest of the day and see what the levels are.

Was your cortisol high before you had lyme?

I think it's very likely it could be from lyme. But, you still need to address them and you've got some good information from cd for your thyroid. That should help.
The thyroid and adrenals are interrelated...so the wonky thyroid may be affecting your adrenal/cortisol levels.

cd, I'm laughing because I opened this thread bracing myself to get scolded! I love that you support my going rogue! It's a bit against my nature so it made me nervous but I 100% agree that increasing the NT by .5 makes the most sense. I guess I'm going to see how I feel on it until the new t3 arrives in the mail (or maybe, until my current bottle of t3 20 mcg runs out). I actually monitor my own NT... It was a previous doctor who prescribed it to me and I just re-order it from his supplement department as needed... So yeah, I can really be on whatever dosage of that I want! I know that's weird. The only pickle is going to be next week when I run out of my t3 20 mcg and just have the new t3 25 mcg as called in by my doctor. But perhaps, if I'm not feeling hyper at that point, going to 25 of the t3 could be in order, too?

Girlie, Thanks so much for that information. I never had my cortisol tested before my lyme diagnosis.. But I realize now I got lyme a long time ago as a kid so I wouldn't be surprised if it was already an issue. In fact, thoughout my 20s by blood pressure was getting lower and lower (70s/40s consistently) and I fainted a lot, and I think that's related to adrenals. I think you're right that I should look into this further. Thanks!!

Ah, this makes sense. Yes, I don't love the idea of going up on the T3 either. It would be nice to aim towards fazing it out. It is time-released so I take it in the morning and I think it works throughout the day. The NT obviously isn't time-released and at the moment I'm just taking all of it in the morning. I just checked and I have a week's worth left of the 20 mcg T3. I do have a refill left on that, so maybe I should go ahead and try to get that refilled. But it sounds like maybe I do need to have a conversation with my doctor about preferring to work up on the NT as opposed to the T3. It feels awkward, obviously, as I'm questioning his choices. Oh dear! He's receptive to emails so maybe I'll email him directly and make a case for it next week, after I've felt out how the NT is going (so far so good!)

So, you do think I may need more than just this one NT increase, right? Based on labs after a few weeks. But you'd rather see it happen with more NT and/or levothyroxine?

I will email you!! Feel free to email me, too!!

Hey - quick question:

Do you take your NT and levo at least one hour before/two hours after last food/drink other than water and at least 4 hrs away from any calcium or magnesium supplements?

This is really important for T4-containing meds and being consistent with these practices will help your levels more stable.....which will help keep you feeling better.