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Discussion Starter · #1 ·
I have hashis and have been on T3 for about a year. Most of my hypo symptoms went away on the T3.

but now I want to go off thyroid support for some time to ensure my thyroid doesn't go completely dormant.

Has anyone done this? My doc wanted me to add in some T4. Armour gave me crazy brain fog, so I'm on some synthetic T4, about a quarter grain every other day, and about 25 mcg T3 every day.

This has dropped my lab tests from a very high FT3, above the range, down to FT3 at the very bottom of the range. My T4 was zero, obviously, and now is barely above zero.

What is confusing to me is that after doing this for several weeks, in other words I'm super hypo based on the numbers, my TSH is almost at zero. I would have expected it to respond to the low thyroid levels by being quite high, therefore enticing my thyroid to start producing again.

Does anybody here have any experience with this and jumpstarting the thyroid again? thanks.
 

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Honestly? I don't believe its an option, long term. You might feel ok for a short time, but it won't last. Autoimmune disease is progressive and there's no cure.

Mixing t4/t3 with desiccated meds is...highly unusual. I wouldn't know how to advise you.
 
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It's all about "how you feel"..................
The ranges and numbers are important but not as much as how you feel...........
TSH a pituitary hormone takes many weeks to respond to a change in med's..........
Most people new to thyroid disease are very impatient.......
If you can suck it up long enough and stay on one dose your body should adjust to it and you should start feeling better......

good luck......
 

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Discussion Starter · #4 ·
"Autoimmune disease is progressive and there's no cure."

I'm not sure how you can say that, especially since there are some people that have claimed to reverse their hashis.

I've been managing mine for over a decade and am not progressing. I've taken measures that result in continuous improvements. All the while, no thyroid supplementation until the last year, which was an experiment with T3.

My question here is if anyone has been fully supplemented and then gone off meds? I'd like more info on that.

thanks
 

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I've never heard of such a thing...........If I did ."I'd be trying it".........
Your immune system is destroying your thyroid slowly over years............
The only organ I know that can somewhat regenerate itself is you liver......and of - coarse your skin...

There ain't no turning back buddy.............
Without thyroid hormone I'd be dead in a few months......
And even if I was still alive..............I wouldn't want to be..........

I'd stick with your med's ............... you're gonna' need them............

PS> anyone claiming to be able to restart your thyroid is trying to sell you something that don't work...
 

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"Autoimmune disease is progressive and there's no cure."

I'm not sure how you can say that, especially since there are some people that have claimed to reverse their hashis.

I've been managing mine for over a decade and am not progressing. I've taken measures that result in continuous improvements. All the while, no thyroid supplementation until the last year, which was an experiment with T3.

My question here is if anyone has been fully supplemented and then gone off meds? I'd like more info on that.

thanks
Welcome to the board Dan!

Do you by chance have any copies of your lab's that you could post with results, ranges and what medication you were taking at time of lab draw?

What you describe is challenging for me to comprehend without seeing your lab results.

Have you ever had TPO or thyroglobulin antibodies tests run? Have you had an ultrasound?

so I'm on some synthetic T4, about a quarter grain every other day, and about 25 mcg T3 every day.
What you list here is a pretty hefty dose of thyroid hormone replacement.

Mixing Synthetic T4, NDT and Synthetic T3 is not the usual course of treatment - what sort of doctor is prescribing this?

If you have TPO anditbodies present and are taking this much medication I doubt highly you will be able to stop your hormone supplements permanently.
 
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Discussion Starter · #7 ·
I have a Naturopathic doctor who combines prescription based medicine with supplements, diet, etc. She specializes in hormone replacement. I've seen others similar to her, and I also have a "functional medicine" DO that I see occasionally.

The latest test is while I was on 25 mcg T4 every other day and 25 mcg T3 every day as stated. I don't know how this is a high dose. It's a quarter grain of T4 every other day. My lab test reflect super hypo on this dose as I am trying to re-stimulate my own thyroid system temporarily. I do not want my thyroid to atrophy to the point where it won't ever work again. Going off the meds is necessary to re-stimulate it.

I went on T3 for a year based on https://www.amazon.com/Recovering-T3-Journey-Hypothyroidism-Thyroid/dp/0957099304

my TSH was .01L (.4-4.5)

FT4 .3L (.8-1.8)

FT3 2.4 (2.3-4.2)

thyrogloubulin antibodies 112 (<1)

TPO 801 (<9)

This dose for several weeks, hoping TSH would start increasing and naturally bring up my FT3 and FT4 in conjunction with the low dose of thyroid.

For around a decade I managed my hashis with supplements such as selenium, Iodine, LDN and the other usual suspects. Plus frequent fasting reversed most of the symptoms.

for those of you that haven't fasted, you have no idea when you say this isn't reversible and is only degenerative. Most of my symptoms were reversed with fasting. But I believe I'm going to have to do a complete fast (40+ days) to completely rid myself of the disease and so far I have only done a maximum of three weeks.

the remaining symptoms pretty much went away on the T3, but whereas that dose was perfect for some tissues, it was too high for others, like the heart. My heart rate went up from 60 bpm to 120 on that dose. So I dropped back to 100 mcg of T3 for the duration of the year. A couple hypo symptoms returned, but a lot of great stuff started happening over time on my lab tests.

Basically, T3 is the magic bullet on a lot of things. For instance, as a man, my testosterone went from almost nothing to near the high end of the range after some time on T3. Weight fell off, lots of good things. Most of the brain fog went away, etc.

But as I mentioned, I don't want to be dependent for the rest of my life. Stopping and starting to ensure the thyroid doesn't completely atrophy is the goal.

Imagine if thyroid meds become unavailable!? What do you do? The economy could collapse, war, who knows!?

Fortunately, if you're OK with synthetic replacement, you may be OK down the road due to the power of big pharma. but if you like NDT, who knows? that's cutting into some big pockets.

Also, I have Lyme. I've read that there are Lyme doctors that claim if you have an autoimmune disease, you have Lyme. Would love to hear thoughts from all of you in the trenches with me on this. How many of you have checked for Lyme? I didn't believe it at first either!
 

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Good luck to ya'..........
My thyroid is a piece of hamburger by now & yours is on it's way to become..........
You can stop the progression with immune suppressive med's but you're stuck in the middle of the destruction.......
You can do whatever you want but we are just giving you advice & experience with the disease...........
Most of us don't have much disposable income to search for a cure........
Until they learn to do thyroid transplants we are stuck taking hormone replacement......

If there's a zombie apocalypse I going after all thyroid healthy people............"so beware"

If you can find the "cure" let us know...........
good luck again.............
 

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The latest test is while I was on 25 mcg T4 every other day and 25 mcg T3 every day as stated. I don't know how this is a high dose. It's a quarter grain of T4 every other day. My lab test reflect super hypo on this dose as I am trying to re-stimulate my own thyroid system temporarily. I do not want my thyroid to atrophy to the point where it won't ever work again. Going off the meds is necessary to re-stimulate it.

my TSH was .01L (.4-4.5)

FT4 .3L (.8-1.8)

FT3 2.4 (2.3-4.2)

thyrogloubulin antibodies 112 (<1)

TPO 801 (<9)
With TPO antibodies as high as yours I have to agree with the "hamburger" reference to the condition of your thyroid.

I would love to see your thyroid lab's during your journey - did you keep a log of med's, results and how you felt?

I am a bit of a lab junkie and have every lab run during my thyroid disease discovery.
 

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Does the author of the book who speaks from his personal experiences and who you are basing your treatment on talk about antibodies?

If you can lower your antibodies you can help stop the destruction of your thyroid gland. Your TPO antibodies are awful high and the damage is likely already done which means you will likely never recover 100% function of your thyroid.
 

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Discussion Starter · #11 ·
Before I started T3, my thyroid output was euthyroid. FT3 and FT4 were within the typical range.

so while it was being attacked, it was still doing it's job.

The real issue with the hypothyroidism I was experiencing was what Dr. Lowe refers to as Peripheral. There is an issue beyond the blood levels, at the cellular level. And at that point, there's no way currently to test anything. hormone receptor problems, diodinase problems, genetic problems

https://restorativemedicine.org/journal/peripheral-thyroid-hormone-conversion-and-its-impact-on-tsh-and-metabolic-activity/

Fasting protected and healed my thyroid. It's that simple.

Through fasting all my major hypo symptoms were greatly relieved.

Joint Pain: disappeared completely

Skin Issues: 95% better

Depression: 90% better

Brain Fog: 70% better

Allergies: completely gone

Basal Temp: completely recovered

etc.

I can't remember what the author of the book said about antibodies. I don't think he cared, because on T3 he felt great and admitted that he had been on it so long that his thyroid completely atrophied. And if that's the case, who cares about antibodies?

Which is the point of my post. I don't want to go down that road.

I can envision a new protocol where one goes on supplementation for a discreet amount of time, say one year, and then weans off for a period of a month or two to ensure the endocrine system still can function on it's own. Once that's established, you can go back on the meds for another year and repeat the cycle.
 

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You have Hashimoto's. Sorry, but their is no cure. I hate to break the news to ya, but you will be on thyroid medication for the rest of your life. That is, unless you want to stop it and suffer the consequences?

Hashimoto's is not just a thyroid that is turned off or has been turned down too low. It is an autoimmune disease that is causing the thyroid malfunction. Your body's own immune system has decided to go all out and attack your thyroid. Big mistake, since we need a thyroid to function, but there is no convincing your body to stop the attack. It's simply not possible, unless you can show me the exact evidence as to how.

Who are these people to claimed to have reversed their Hashimoto's? Or do you mean reversing just plain old vanilla hypothyroidism, non-autoimmune? If you mean some certain people who have recently written another book, but who are not doctors, who have not done any legitimate research on their claims, who don't even have references on their website nor in their book(s) supporting their claims, who are claim you can reverse Hashimoto's but do not ever say exactly how, who say they have reversed their Hashimoto's yet are still on thyroid medication themselves (search their website, including the comments and you too shall read this), then this is nothing but a lie and an attempt to get you to buy their supplements and their phony claims rolled into books.

As with any autoimmune disease (like the one you have), there is no turning off those thyroid antibodies. You might be able to reduce them a bit, but probably not ever very much. Show me some studies where people have actually reversed their Hashimoto's or Graves, and then I'll believe that this is possible.

If you're talking about plain old vanilla hypothyroid, yes, then it is possible to jump start your thyroid into producing it's own thyroid hormones, since this is non-autoimmune thyroid disease. I personally know of someone who had this happen and not longer takes medication. This is possible because this person did not have aliens from outer space attacking their thyroid 24/7, like you, me and all the other people with Hashimoto's do.

Sure, Lyme can trigger autoimmune diseases. Lyme is nothing but a foreign body that disrupts healthy bodily function. It messes up your immune system, just as bacteria can, viruses can, and any other foreign substance that gets put into your body and causes a negative reaction. Pollen, cigarette smoke, chemical fumes, chemicals on your skin, allergies to pets and food, parasites, foods that cause inflammatory response and all the others that I'm leaving out. They can all contribute to getting an autoimmune disease.
 

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Envision all you want...........................

One day you're gonna' have to except the fact that you need hormone replacement...........

Your symptoms are mild and vague at this stage of the disease..................

Wait till you can't make it up the steps to go to bed or the bathroom...........

Or like me another "man".............wait so long as to have permanent nerve damage from not seeking or excepting that there was something wrong.............

"Thyroid disease is nothing to mess with..............

Listen to your body..............................
 

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those numbers don't look good I'm concerned hope you can get your t4 level up also I never heard of synthetic t4 called grains ?? that's news to me always refer to that as NDT
 

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Envision all you want...........................

One day you're gonna' have to except the fact that you need hormone replacement...........

Your symptoms are mild and vague at this stage of the disease..................

Wait till you can't make it up the steps to go to bed or the bathroom...........

Or like me another "man".............wait so long as to have permanent nerve damage from not seeking or excepting that there was something wrong.............

"Thyroid disease is nothing to mess with..............

Listen to your body..............................
And to people who are well educated, and those who have been there, done that, and are not in denial. In the case of Hashimoto's, ignorance never equates to bliss. Sorry to be so blunt!

If you want to be the guinea pig and stop your meds to see if you've "turned the thyroid back on", you could always try and then come back and let us know how it all went, including your lab results FT3, FT4, TSH, and antibodies.

Good luck! ;-)
 

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those numbers don't look good I'm concerned hope you can get your t4 level up also I never heard of synthetic t4 called grains ?? that's news to me always refer to that as NDT
Right? Grain always refers to NDT. T4 is either dosed in mcg or mg. So which is it, NDT or T4? Plus, what's with the atypical and very strange less than starting dose of T4, every other day? Correct starting dose of T4 is 50 mcg, taken every day.

These have got to be the wrong labs, right? Like, these are the labs BEFORE you started meds, not after starting meds? Because if you are on meds with these labs, these labs are really bad and show under medication.

FT4 is below range, forget about being even 1/2, let alone optimal. If this is after starting meds, well no wonder. You're skipping every other day, plus you're not even taking the full starting dose.

FT3 is barely even at the lowest number of the range. Forget about being up at optimal, over 1/2 but close to 3/4 range.

TPO is high. Indicates Hashimoto's.

"my TSH was .01L (.4-4.5)

FT4 .3L (.8-1.8)

FT3 2.4 (2.3-4.2)

thyrogloubulin antibodies 112 (<1)

TPO 801 (<9)

This dose for several weeks, hoping TSH would start increasing and naturally bring up my FT3 and FT4 in conjunction with the low dose of thyroid."

There is a big misunderstanding because that is not how the thyroid works. First of all, TSH is not a thyroid hormone. Unless it is over 2.0, it does not matter. What matters are the levels of the real thyroid hormones themselves, FT4 and FT3.

What you are thinking will happen, take meds, TSH starts increasing and FT3 and FT4 will increase will never happen. Besides, it's not your TSH that matters, unless it's over 2.0. Taking thyroid meds does not ever increase TSH levels, as you can see. Taking thyroid medication suppresses TSH, making it lower. At no time does an increase in TSH ever result in an increase of FT3 and FT4 levels. In a healthy, unmedicated thyroid, the higher the TSH, the LOWER the FT3 and FT4. In other words, the lower the FT3 and FT4, the higher the TSH.

In a medicated thyroid, TSH should be suppressed, resulting in an increase in FT3 and FT4. In your case, your FT3 and FT4 are both not even in the range. You are a very long way from ever being optimal. Get up near optimal, take the strain off your thyroid and your thyroid antibodies might decrease.
 

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those are sad labs for sure hopefully you decide to medicate and get a better doctor if this one is telling you every other day is okay for that dose
 

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When I first found out I had Hashimoto's..I had a TSH of 16 and a TPO of 4,900+ .. (that number is correct).. and an expensive trip to the ER

I can tell you that I 'absolutely believed' that i could turn my thyroid back on.. I read & studied everything I could get my hands on so that I wouldn't 'have to' take pills the rest of my life.. I also had an endo who actually encouraged me to go off my meds to 'see what my baseline was' & to study my progress.. once I was off.. she wouldn't see me until I reached a TSH of 10 again..

Yes, i was in complete denial & believed whole-heartedly I was going to be "cured"..

I believed the hype online..I believed my doctor who was using me as a guinea pig study

I completely changed my diet and was only on 25mcg of levothyroxine.. I dedicated a year to be strict and get back what i thought I'd lost.. I obeyed, I followed..

Yes, i did bring down my TSH.. and my TPO went from that number to 24.. & thought I'd kicked its butt..

AND THEN THE CRASH CAME

Last year in October.. out of the "blue" my numbers skyrocketed once again.. but, in saying that.. they actually were never really truly "optimal".. they fluctuated every test and always on the side of hypo.. and my endo convinced me I was "cured'..

I WASN'T CURED!!... I should've never gone off my meds.. E.V.E.R..

I regret that I 'believed' the BS, I regret that an incompetent doctor used me for her study

I had to wait to feel like crap, heart palps, shortness of breath, hair falling out, swollen lymph nodes and such a huge decrease dramatic weight loss (i now only weigh 112 lbs)..I can't believe I did that to myself.. today, I'm still trying to regroup..

I am getting better but the road to recovery is long and tedious & a lot harder.. I did a lot of damage to my precious thyroid

Trust me when I tell you, I bought the same thing 'hook, line & sinker'.. and it nearly killed me..

I'm worse off than when my thyroid was at 16 and my TPO was 4900+.. don't do that to yourself..

If you're here for people opinions then great.. but, if you can learn from someone's actual experience.. that would be the key..

Think about it.. and I hope you make the decision to stay on meds.. your labs say you definitely need them..

and above all.. don't be a guinea pig or a slave to someone who tells you you can be cured from this..

You can't..
 

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Excellent post, Runa-D.

I'm going to borrow a line from Lovlkn: if standing on your head and rubbing your belly makes you feel better, then do it.

And if it works for you, I'm (personally) 100% supportive. I just can't point to any posters experience or clinical research that supports the idea.
 

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I'm going to borrow a line from Lovlkn: if standing on your head and rubbing your belly makes you feel better, then do it.
I can't take credit for this line - but I like it!!
 
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