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At a crossroads with Naturthroid vs synthroid/cytomel. Help!

I'm new here.  Not at all familiar with chat groups and really seeking input and wisdom.
Briefly....46 years old, diagnosed Hashimoto's at 31 which was, we suspect, tripped off by Lyme in my 20's.  Also had EBV early 20's.  I have never suffered from Lyme in visible ways...no body pain or fatigue or major illness like you see in many.
  
Have been treated for the entire time with combo Levo/cytomel.  Consistent results of low TSH, and low but in range T3 and T4 the whole time.

In April I decided to try NDT.  My deceased mother insisted on NDT only.  Armour first at 60 for a month, terrible constipation.  Switched to Naturthroid with positive results up to 93.5 in May.  Have felt amazing...more social, more at ease in the world, just really outgoing and more interested in life.  Super motivated and just happy.  Maybe the best I've felt in 20 years.  No joke.

Here we are 3 months later having been at Naturthroid 93.5 for 6 weeks with the following labs:
TPO Antibodies-         13        (should be lower than 9)
Free T3-                      2.6       (2.3-4.2 pg/ml)
Free T4-                     .07        (0.8-1.8 NG/DL)
TSH-                           4.35     (0.55-4.78 uIU/ml)            

I admit, these last 2 months as I've slid down from low/in range to below range I've noticed more PMS and ovulation mood stuff.  Most recently frazzled, stressed, short tempered....even thinking I was over replaced until this recent lab work from 3 weeks ago.

A week ago, not knowing what to do, I asked an osteopath I see from time to time to put me back to synthetic.  A week in and I'm markedly depressed, like I feel really low and out of it and withdrawn and it's awful!  88 synthroid brand and 12.5 cytomel.  Not doing well emotionally.  Also since switching back to synthetic have developed a large fibrous cyst in one breast.  Very painful.

Also of note is that these past 2 months have also seen significant mold disruption in my house as I have had remediation done.  There is also a roof leak that was repaired but the drywall beneath it is waiting to be replaced.  Mold + lyme + thyroid = unhappy trio.

My questions....am I feeling crappy from low #'s or from the synthetic drugs?  It seems like the latter.
                         Stick it out with the synthetics to get my #'s back up and assume that NDT failed?
                         Or go to 2 grains of Naturthroid?  Perhaps adding in  T4 later if needed?

Here's the rub, the only person willing to work with me, really willing to dig into this, and seemingly the only person with a clue at all, is my cousin a state away who is a nurse practitioner specializing in thyroid...working on her functional med licensure.  Mainstream endo's are overwhelmed with diabetics.  A functional med doc in Lexington along with the osteopath I mentioned here in town are totally focussed on Lyme/mold to the exclusion of pretty much anything else.  The functional med doc was like, "Yeah, sometimes Hashimoto's people do better with synthetic."  The osteopath said, "Tell me what you want me to prescribe."  So I have little direction except for my cousin.

Sigh.  Please advise.
Desperate and low,
Hope
5 Responses
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649848 tn?1534633700
COMMUNITY LEADER
You mean the breast cyst is gone?  How do you know it's totally gone?  Did you have another ultrasound?   I don't think that would have anything to do with Synthroid.  I think it's just a coincidence that it appeared/disappeared when it did.  It could reappear again at any time.  I'd certainly agree that it should be checked again in a few months.

To answer your previous question... Cortisol can affect thyroid hormone levels and it's best to do cortisol as a 24 hr saliva test.  Many doctors won't order this test and many insurance companies won't pay for it...if this is the case for you, we can tell your where to order it online for a very reasonable price.  
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I mean the cyst is gone yes, the pain and inflammation are gone.  I can feel just the slightest remnant of it, but there is no pain.  A few days ago my breast was sore to the slightest touch.  The cyst was large and that bulk and significant pain went away totally in 2 days.  Huge coincidence to me.  Disappeared as quickly as it appeared.

I will ask my osteopath about the 24 hr cortisol saliva test.
649848 tn?1534633700
COMMUNITY LEADER
If it's positive that you had/have Lyme Disease, why were you never treated for it?  It only progresses if not treated.  How did the EBV manifest?  Did you have mono?

FT3 can be "upper half to upper third" - there's wiggle room there and some people go to the top of the range, as long as they don't have hyper symptoms.  And yes, you want FT4 around 1.3.  Of course, this is assuming that the lab you use continues to keep the same reference ranges.

Just keep in mind that the labs are "guidelines"... your symptoms are the deciding factors.

Note:  You're saying "T4 and T3"... always make sure Free T4 and Free T3 are tested... I know that sounds nit-picky, but if you don't specify Free T4 and/or Free T3 or FT4/FT3, you'll get Total T4 and/or Total T3 and they aren't the same tests nor do they provide the same information as the Free's...

I'm confused as to why you'd think you'd have to abandon the chosen avenue of treatment... once you find something that works, the last thing you want to do is abandon it.  The only time we abandon a working treatment is if we have to change doctors and the new doctor refuses to prescribe the same medication or something like that... then we start looking for another doctor... lol

You're right, though, that you'll probably have to add a source of T4 in order to get/keep your FT4 at/near mid range - and remember, these are guidelines - you don't have to keep your levels "exactly" at 1.3 and 3.3... you aren't going to be able to do that as they will fluctuate at times - just stay in the ball park and feel well.

Don't forget to split the NatureThroid dose - 1 grain in the morning and 1 grain around noon... if you wait too late in the day, the T3 in the medication will cause interference with your sleep. If you have the med dispensed in 1 grain tablets, you won't have to split the pills.

Typically, it's best to test at 6 week intervals, as long as we're actively adjusting medication(s).  Once you get to the point where you think you're pretty close to optimal (for you), you can cut back to every 3 months, then when you get there, every 6 months.  My doctors have always had me test every 6 months; others have patients go for a year.  I think a year is too long, but if you feel okay, it's fine as long as you can test when you need to. Always make sure Free T4 and Free T3 are tested every time... never settle for just TSH.

You can test female hormones and cortisol whenever you want to.  It's a pretty sure thing you're in perimenopause; are you looking to supplement your female hormones? There are herbal supplements you can try, to help alleviate those symptoms, if you're interested in that route.

It's normal for the adrenals to kick in to take up the slack when there isn't enough thyroid hormones, but they should go back to normal soon.  A single blood test is a poor indicator of adrenal status.  The best test is a 24 hr saliva test.  Not all doctors will order this test and many insurance companies will not pay for it.  You can check it out and if yours won't we can tell you where to order it online at a very reasonable price.
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Ok regarding Lyme...here's the story.  I went to a functional med doc last year for a suspicious rash, not the bull's eye but red splotches all over my stomach and chest.  This doc is a leading doc in the country for Lyme and the town is only an hour away and I'd had a very early, notable, Lone Star tick bite the month prior so.....I went to her.

The results came back as inconclusive....tons of blood was taken and all sorts of markers were read and I can share those with you.  The test didn't plainly reveal 'positive' for Lyme, but there were other markers that were suspicious.  And it's easy to test negative for Lyme and actually have it. One level, MSH the master hormone apparently, is very very low in me.  She zeroed in on that and mold exposure.

Wanting to get input from a doc closer to home I went to an osteopath who some friends see here in town.

She says I have Lyme beyond any question, hands down, absolutely for sure.  Ok.  She said that based on another # from that very same bloodwork done in Lexington she can tell that I have had Lyme in my system for years, likely 20 at least.  She wants me to detox for mold first then treat for Lyme with herbs.  Like I said, I've never had *overt* symptoms like some people I see who are totally disabled.  So no, we did not treat with doxy or any of that.  It's assumed to be in there lingering but dormant perhaps?  Idk.  I just want to fix my thyroid.  I don't have time to fixate or hop on the bandwagon for Lyme OR mold really.

Yes, when I was about 21 I had mono then again some years later and I swear I had a flare up last year right at the time of that rash.  Still not sure what that was, but I do know I slept for 2 days straight.  Then the rash vanished.

Like I said, I'm pretty much alone in this, or have been, and haven't known what avenue to take regarding thyroid and best treatment.  All I've ever known, mostly, is conventional treatment with synthetic hormones.  I had to fight to find a doc 15 years ago who would allow cytomel.  I have not wanted to do something wrong and let my mood slip.  I can't afford that.  I guess I just haven't had the confidence in nor full knowledge of NDT and its efficacy since it's all new territory.  That's why I thought to abandon it.  I have simply not had sound nor consistent advice.  I've been treated 'in range' successfully, albeit low I know, for so long yet haven't really felt super.  Assuming our constitutions to be similar I figured I'd give NDT a try since it's the only thing my mom would take.  Period.  When my hashimoto's was discovered NDT wasn't presented as an option and never has been.  This has all pretty much been a solo journey, educating and advocating for myself.

Don't worry, free T3/4 always, free.

Yes, please recommend tests to order for cortisol as well as estrogen and progesterone.  Is it true that it's best to do saliva testing for the two latter?  And test in the window of days 19-21?  I just wasn't sure if optimal thyroid levels would influence sex hormone levels.  If so it makes sense to wait.  If they are not influenced then I could go ahead and test.  I have no idea if I'm low estrogen or low progesterone or what.  And I have no clue about adrenals.
Godsend to have this conversation with you.  Thank you.
UPDATE.  I had the cyst examined Thursday as it was of true concern to my family doc.  The doctor at the breast imaging center, after looking at it for a long time via ultrasound, determined it to be a 'complicated cyst'.  He wants to see it in 4 months.

I did not take synthroid that day and instead took 2 grains Naturthroid.  Did that again yesterday.

Today, 2 days after that ultrasound with a very large very painful cyst, that cyst is totally gone with no trace of pain.  I think it's absolutely got something to do with synthroid.  It appeared 5 days into taking it last week, disappeared 2 days after stopping.  Profound to me.
649848 tn?1534633700
COMMUNITY LEADER
Weren't you treated for the Lyme Disease?  If so, that means you should no longer have it, even though it "could" have triggered your Hashimoto's.  But then if you had EBV, so could that have triggered your Hashimoto's... They could both have been the triggers - who knows?  

Is the one TPOab the only antibody test you've had done?  that one isn't very high, since we often see antibodies, either, TPOab or TgAb, in the hundreds or even thousands.  

Some research indicates that selenium will lower antibody counts; I've taken selenium for years and my antibody counts started going down when my thyroid died, but they still haven't gone back to zero yet...

Some people also say that you can reduce antibodies by eliminating wheat (gluten), and while some research is pointing that direction, it hasn't been proven yet.  My doctor says "why do eliminate a food if you don't have to?" meaning there's no need if you aren't allergic/sensitive to it.

As for what you should do - you're the only one who can make that decision, along with your doctor,  You have 2 options, which are the NatureThroid or the synthetics.  It's not unusual for those on desiccated hormones to have to add a small amount of T4 medication, such as Synthroid or Levo in order to increase Free T4 levels, but, in my opinion, that's a small price to pay, if you feel better, overall...

If the osteopath is willing to prescribe what you want, personally, I'd go for whichever I felt the best on and stay with it until my levels were optimal.  Once that were achieved, if symptoms weren't alleviated, I'd start looking at vitamin deficiencies, other hormone levels (reproductive hormones, cortisol, etc).  
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Nope, never treated for Lyme.  And yes, the EBV is all tangled up in there as well.  Nice.

OK, I really really appreciate your input.  I'll keep you posted.  And now I know to shoot for upper third of range for FT3 and mid range for FT4.  So. T3 at or above 3.3 and T4 at or above 1.3.  Is this right?

I'm going to request Naturthroid 2 grains now.  At which point would this avenue need to be abandoned?  Or perhaps never if a little T4 gets added in.....
And how frequently can I test as I'm striving for this sweet spot?  
Sorry, one more....should I wait until thyroid levels are good and squared away *before* testing sex hormones and cortisol?
649848 tn?1534633700
COMMUNITY LEADER
"I concluded that NDT was 'not working' for me, that I am not a candidate.  Was it premature to conclude this?"

Yes...but it wasn't only the NatureThroid; it doesn't look like you've ever really had a high enough dose of any type of thyroid medication to get your levels, to what we would consider, "optimal".  

As I noted in my previous post, Free T4 should be about mid range, so if the highest you've ever been is 1.1, in a range of 0.8-1.8, the most you've been is 30% of range... that's not high enough.

For Free T3, you should be in the upper half to upper third of the range.  With a level of 3.2, you would have been at 58% of the range... while that's in the upper half, that's not high enough for many of us, especially with Free T4 at only 30%.

You have to have a good balance of Free T4 to Free T3, which is why the recommendation of FT4 at mid range and FT3 in the upper half to upper third or range.  If either are too high or too low, you aren't going to feel good; in your case, both have been too low.

Most of us find that when we take a thyroid medication with T3, such as NatureThroid or Cytomel/Liothyronine, it works best to split it into 2 doses, with 1/2 in the morning on an empty stomach and the other half around noon or early afternoon, since T3 is fast acting and only stays in the system for a few hours.  This keeps Free T3 levels more stable throughout the day.  I'm sure it must be difficult splitting a 25 mcg cytomel tablet in half to get 12.5 mcg, then splitting it half again in order to take 1/2 in the morning and 1/2 later in the day.  
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It's not easy, no.  But I've been doing it.  The 25mcg tablet is scored so getting to 12.5 isn't terrible.  Then I break that in half...getting the whole amount per day, more or less half at 7am and the other half at 3pm.

So I guess I'm faced with two paths.  Stick it out with synthetic or back to Naturthroid and bump that up.  

I hear you about my levels never being optimal.  I had no idea.  Wow.  That's amazing.

So, considering everything....46, perimenopause, Hashimoto's, lyme, mold, etc.....and considering that I really loved, albeit short term, NDT....but also considering that my #'s haven't improved yet on those....  What should I do?
And there's the antibodies thing....I know I could be doing more to get those down on my own.  Eliminate wheat being #1?
649848 tn?1534633700
COMMUNITY LEADER
Both your Free T4 and Free T3 are way too low in the ranges.  Free T4 should be about mid range and Free T3 should be in the upper half to upper third of its range...

That said, why did you decide to change from NaturThroid to synthetic when you were feeling so good?  Why not simply increase your dosage?

Do you know what your labs are like on the 88 mcg Synthroid and 12.5 cytomel?  

Did you take all the NatureThroid in one dose in the morning or did you split it into 2 doses?  Had you taken your dose prior to having the blood draw?  

Are you currently, taking all your cytomel at one time or do you split that into more than one dose during the day?

Are your symptoms mostly the depression, PMS type or do you have others, as well?

Sorry to ask so many more questions, but the answers will help us give you better responses.
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1 Comments
I'm really grateful for a response.  

Ok, for years I've been on 88 levo, 10 cytomel.  In March I switched to brand Synthroid and cytomel, both, from generic.  Because of price I bumped up to 12.5 cytomel (splitting a 25mcg pill) from 2 generic 5's per day.

I did notice an improvement in energy and zest in just the switch from generic to brand.  So I pressed further in my decision to try NDT wondering, 'Wow, maybe I can feel even better.'

For years my levels on that combination of synthetics were consistently:
TSH- from .23-.70 (.55-4.8)
Free T3- from 2.9-3.2 (2.3-4.2)
Free T4 unchanged for years at 1.1 (.8-1.8)

Always, for 15 years, I have split the cytomel dose.  So I have done the same with the NDT.

Yes, my symptoms are and have always been emotional/mental and my reproductive hormones have always been influenced.  I've never had body pain or hair loss or PCOS (that I know of) and this breast lump is the first thing of that sort.  I do have migraines, also hormonal....right at ovulation and immediately prior to a new cycle.

I had not taken my dose of 93.5 Naturethroid prior to that most recent morning blood draw.

The reason I went back to synthetic last week is this...I had had 2 blood draws in the past three months both reflecting fallen levels.  After 6 weeks on Armour 60:
TSH 8.6 (.55-4.8) rising from .23 on synthetic
Free T3 2.3 (2.3-4.2) falling from 2.9 on synthetic
Free T4 .7 (.8-1.8) falling from 1.1 on synthetic

After 6 more weeks at 93.5 Naturthroid:
TSH went down a bit to 4.35
Free T3 inched up to 2.6
Free T4 static at .7

I was in the midst of hellacious PMS, the worst in years (obviously related to low thyroid) and seeing that the T4 had not changed I concluded that NDT was 'not working' for me, that I am not a candidate.  Was it premature to conclude this?  It's true, I felt so much sunnier, more motivated, more ambitious, etc on NDT.  And I just have no direction from anyone.  Feeling pretty alone in this.  Really eager to hear your thoughts.
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