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Old 05-02-2012, 09:47 AM   #1
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Going off synthroid and healing thyroid naturally

I was diagnosed with hypothyroidism at 13 and have been treating it with prescription drugs since then which is about 22 years (been on Synthyroid .137mg for last several years).

Despite being on meds and having "normal" TSH levels, my symptoms have NEVER gone away (fatigue, hard time losing weight, cold, dry skin/hair). I also developed or worsened other symptoms such as anxiety, brain fog and general muscle/joint aches despite going to physio and massage therapy.

On a separate issue, I recently visited a nutritionist and it turns out she specializes in thyroid issues who recommends that I talk to my doctor about going off Synthyroid and changing my diet (higher protein, gluten-free, eating only animals fats and avoiding goitrogens vegetables) so I can heal it naturally - with all due respect, I'm not looking for advice on this piece unless you have actually tried it.

I started recording my temperature and pulse rate throughout the day so I can keep track - I haven't gone off the meds yet or made the dietary changes until I talk to my doctor and also have about a week's worth of food and temperature.

I still think there's a lot of stigma around how to treat hypothyroidism (with Synthyroid) so there's not much medically documented information on this - just wondering if anyone has gone of Synthyroid after being on it for years or any other advice you can share?

Is there anyone who has first hand experience going off Synthyroid after being on it for a long time? What that was like, and how did you supplement?


Thanks!

Last edited by oceania; 05-02-2012 at 11:58 AM.

 
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Old 05-02-2012, 11:02 AM   #2
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Re: Going off synthroid and healing thyroid naturally

Welcome!

Sorry for the reason you're here but, glad you found us.

If you've been dealing with hypothyroidism since you're 13, you most likely have Hashimoto's thyroiditis, the most common cause.

Having Hashi's means that your thyroid is slowly being destroyed by antibodies. There is no way to treat this other than replacing the hormone not being produced in sufficient amounts by your thyroid to meet the needs of every cell in the body.

You only mentioned your TSH and, if that is the only test your doctor has been running all these years, therein lies a very big reason why wellness hasn't been restored.

TSH is a pituitary hormone and, as documented in "Thyroid for Dummies" and countless medical resources, is not a reliable indicator of thyroid function.

Thyroid-savvy doctors know to look at the actual thyroid hormone levels - FreeT4 and FreeT3 - for treatment.

Those same doctors know that each of us has his/her own optimal FreeT4/T3 levels (called setpoints) within the ranges of normal.

For most of us this means having FreeT4 and FreeT3 levels above mid-range, if not in the upper quarter of the range.

I'm sorry but, I do not recommend you following the advice of the nutritionist.

Unfortunately, I've seen patients be taken off Synthroid or they took themselves off and all this accomplished was them becoming miserable and their health endangered. They always learned they needed thyroid hormone replacement but had to start all over with the meds titration process.

You are correct that a lot of stigma is associated with T4-only meds such as Synthroid. In fact, I just started a thread that describes a petition being created for submission to various endo associations addressing the poor care we thyroid patients receive - especially T4-only meds.

There are other options out there such as Cytomel (T3 med) or desiccated thyroid, if appropriate.

Rather than stop Synthroid, I highly suggest you get properly tested with the FreeT4 and FreeT3 tests. We can show you how to interpret the results so you can rally for the proper care.

It's entirely possible to feel well while having hypothyroidism - it's all about optimizing the FreeT4/T3 levels.
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Last edited by sammy64; 05-02-2012 at 11:15 AM.

 
Old 05-02-2012, 11:54 AM   #3
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Re: Going off synthroid and healing thyroid naturally

Hi Sammy,

Thank you for such a quick and detailed response however, with all due respect I'm not looking for advice to not do this because there always be at least one person who says the opposite on just about any topic imaginable.

This in itself makes it so frustrating because it's next to impossible to get consistent or accurate information...how do you know who to believe? In the end, we all have to do what's what right for our own bodies and no one knows their own bodies better than themselves.

I should also mention that except for Synthyroid I refuse to take any other medication unless absolutely necessary. I don't believe our bodies were meant to healed or treated with foreign, unnatural substances, particularly ones developed by profit-driven pharmaceutical companies which is one of the reason why I'm very weary of Western medicine.

What I am looking for is someone with first hand experience who has gone off Synthyroid after being on it for a long time. I want to know what they're experiences have been and what they did to supplement.

Thanks!

 
Old 05-02-2012, 12:09 PM   #4
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Re: Going off synthroid and healing thyroid naturally

Quote:
Originally Posted by oceania View Post
What I am looking for is someone with first hand experience who has gone off Synthyroid after being on it for a long time. I want to know what they're experiences have been and what they did to supplement.
I doubt very much you'll find such a person on this board. The board regulars among us are being successfully treated with some kind of replacement thyroid hormone, either synthetic or natural dessicated. The others who come here are desperate for a diagnosis or a similar successful replacement regimen. I've never in my entire time on the board seen anyone in this forum who has reported being successfully treated any other way.
Perhaps the Alternative Medicine board would be helpful.

I will say it, even though you don't want to hear it. Herbs and potions aren't thyroid hormone; they can never replace thyroid hormone. You wouldn't try to treat type I diabetes with herbs and potions; it takes the hormone insulin. The same is true of hypothyroidism. You have to replace the missing hormone. Your gland is for all practical purposes dead. It can't make hormone no matter how much "support" you give it. A dead horse can't be resurrected.

With all due respect to you... You'd be much better off to educate yourself about what successful treatment is and the ways to accomplish it. I doubt you learned that as a 13-y.o., so you may continue to think the only way to treat is the way it's been done so far to you. Synthroid and TSH-monitoring is absolutely not the only way it can be done. We on this board are testament to that.
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Old 05-02-2012, 01:23 PM   #5
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Re: Going off synthroid and healing thyroid naturally

Quote:
Originally Posted by oceania View Post

What I am looking for is someone with first hand experience who has gone off Synthyroid after being on it for a long time. I want to know what they're experiences have been and what they did to supplement.

Thanks!
Hi Oceania,

I have to say without Midwest1 and Sammy64 on this board, I don't think I would learn a ton of stuff I already know about thyroid issues and interpreting labs. I had to respond to this b/c you really are looking for a needle in a haystack to find the few people that have dropped T4 medication (in this case, Synthroid) after being on it for quite a while. Two years ago, I got off Synthroid cold turkey for 8 weeks. The first two weeks for fine (my dosage was 50 mcg/day) and dandy thinking that I don't ever have to touch T4 again. Wrong! After 4 weeks, my face, legs, arms, and stomach were so puffy. Huge bags under the eyes, walking like a turtle, and brain fog to the point where I couldn't even concentrate on my own conversations. No amount of nutrition, exercise, or alternative medicines will help. Please listen to Midwest1 and Sammy64 b/c you will waste your time doing alternative thyroid treatment. I've tried nutrition, Iodoral, bovine thyroid, drinking distilled water, and more. Nothing worked and I had to get back on Synthroid. Most people I know that were told by their doctor that they no longer needed Synthroid needed to stay on b/c they looked hypo and suffered from hypo symptoms. Also, the posters I've read about that have dropped Synthroid had to go back on it to feel better.

Good luck with whatever you decide.

 
Old 05-02-2012, 01:31 PM   #6
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Re: Going off synthroid and healing thyroid naturally

When you use the word "medication" it isn't really descriptive of synthroid, armour, naturethyroid, tirosint, etc---they are replacement hormones of what your body isn't producing.

I'm glad you haven't dropped it yet---you won't feel the results for about 4 weeks.

A good nutritionist will want you to have accurate blood work (you can post your results here and get great feedback), and work with your doctor.

I'm glad you are waiting to speak with your doctor, it's a great idea. I have a feeling you will find that your dose was not adequate, and that's why you have symptoms. Best of luck in your journey.

 
Old 05-04-2012, 03:18 PM   #7
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Re: Going off synthroid and healing thyroid naturally

Hi all,

First off, thanks to everyone who took the time to respond. I'm sorry I should have mentioned that I would be going on desiccated thyroid (I was looking at ERFA because you don't have to chew/break it down unlike Armour) I'm not looking at herbs or potions as suggested but I do believe there are ways to help heal our bodies naturally as well through diet and in this case some yoga techniques. IF it weren't for the nutritionist I would have never explored this so her role should definitely not be downplayed especially since is recommending that I do speak to my doctor.

I've done a lot of research over the past week or so and I'm a little annoyed at myself that it took me this long to educate myself and that I blindly trusted my doctor all these years who refused to look at symptoms I would share with him over the years like carpal tunnel...I can't believe that's related to hypothyroidism! I've been having really bad body aches, especially my hips and thighs which is affecting my back and sleep in addition to neck, shoulder and carpal tunnel problems. I'm also having an absolutely terrible time with excessive fears, anxiety, anger, moodiness, sadness, crying spells and irritability - honestly I thought I was going crazy!! Really tough time concentrating, thinking clearly. I imagine most of you know what I'm going through.

I just can't get over how clueless I've been - I'm trying not to be too hard on myself as it's not going to get me anywhere except upset - at least I know why I've been feeling the way I have.

Anyways, the doc agreed to letting me get my free T3 and free T4 checked but none of the other ones I requested. I've been under a huge amount of stress which I think have also caused adrenal fatigue but he refused to test me for adrenals/cortisol.

I haven't made any changes yet because I want to get some base level tests first and start monitoring things. I don't want to make too many changes all at once because I won't know what works. I honestly feel that my doctor is not a good resource - his first response was to put me on anti-depressants even though I didn't want to - I'm not on them.

I'm looking for advice, support and understanding and for those who have made the switch from synthetic to natural thyroid- I apologize for not being clearer in my previous posts this is all very new to me so please bear with me.

Last edited by oceania; 05-04-2012 at 03:23 PM.

 
Old 05-04-2012, 03:23 PM   #8
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Re: Going off synthroid and healing thyroid naturally

Have any of you made dietary changes? If yes, what are they and how effective are they?

 
Old 05-04-2012, 05:01 PM   #9
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Re: Going off synthroid and healing thyroid naturally

Quote:
Originally Posted by oceania View Post
I'm looking for advice, support and understanding and for those who have made the switch from synthetic to natural thyroid- I apologize for not being clearer in my previous posts this is all very new to me so please bear with me.
Oh well... That I can answer. My MD started me on Synthroid, the only brand of thyroid med she ever prescribes. It overmedicated me at the lowest dose, so she told me to just stop taking it and wait until I got "sick enough" to "tolerate" it. That was the stupidest thing I ever personally heard from and MD. So I took myself to an MD who specializes in homeopathy who I knew would prescribe Armour. I never again had the problem of overmedication I'd had with Synthroid.

When you asked about "natural" methods, I assumed you meant going without prescription thyroid hormone altogether. Armour and other brands of dessicated hormone are prescription products too. Natural dessicateds aren't for everyone, but they do fill a need for a lot of thyroid patients. You may do much better on it than you did on Synthroid; I hope so, anyway.

Diet, vitamins, etc. are useful adjuncts to optimal thyroid hormone dosage; but for me personally, it didn't make a huge difference. But then, my diet wasn't bad to start with, and I already was supplementing with basic vitamins. For me, it was the thyroid hormone - of the right type and in the right dosage - that made all the difference.

Good luck to you!
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Old 05-04-2012, 05:39 PM   #10
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Re: Going off synthroid and healing thyroid naturally

Quote:
Originally Posted by oceania View Post
Hi Sammy,

Thank you for such a quick and detailed response however, with all due respect I'm not looking for advice to not do this because there always be at least one person who says the opposite on just about any topic imaginable.

This in itself makes it so frustrating because it's next to impossible to get consistent or accurate information...how do you know who to believe? In the end, we all have to do what's what right for our own bodies and no one knows their own bodies better than themselves.

I should also mention that except for Synthyroid I refuse to take any other medication unless absolutely necessary. I don't believe our bodies were meant to healed or treated with foreign, unnatural substances, particularly ones developed by profit-driven pharmaceutical companies which is one of the reason why I'm very weary of Western medicine.

What I am looking for is someone with first hand experience who has gone off Synthyroid after being on it for a long time. I want to know what they're experiences have been and what they did to supplement.

Thanks!
I did. I went off of Synthroid for a month because it was poisoning me.
I was mostly dead already.

This was only until I could get into a thyroid savvy doctor who put me on a natural thyroid called Nature-Throid.

I don't know if I would have been worse if I had stayed on Synthroid for that month or not because I was so very, very sick. Unable to get out of the bed sick.

I can only tell you that without my natural thyroid hormones, I would not be able to be typing to you right now.

I feel well again.

I've read posts from hundreds of people on this Board. I've never seen or heard of anyone who was able to heal hyperthyroidism with anything other than with thyroid hormones, either natural ones or synthetic.

By the way, I don't take any other drugs now, and I'm now Gluten Free due to Gluten Intolerance.

There are several books out there written by medical folks who will tell you what Midwest and Sammy64 are telling you.

One is called "What Your Doctor May Not Tell You About Hyperthyroidism".

Another is called "Thyroid For Dummies".

None of us want to see anyone suffer the way we have.

Anything being offered to you here is being offered solely out of concern for you and your health.

I wish you the best.

 
Old 05-04-2012, 05:49 PM   #11
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Re: Going off synthroid and healing thyroid naturally

Quote:
Originally Posted by oceania View Post
Hi all,

First off, thanks to everyone who took the time to respond. I'm sorry I should have mentioned that I would be going on desiccated thyroid (I was looking at ERFA because you don't have to chew/break it down unlike Armour) I'm not looking at herbs or potions as suggested but I do believe there are ways to help heal our bodies naturally as well through diet and in this case some yoga techniques. IF it weren't for the nutritionist I would have never explored this so her role should definitely not be downplayed especially since is recommending that I do speak to my doctor.

I've done a lot of research over the past week or so and I'm a little annoyed at myself that it took me this long to educate myself and that I blindly trusted my doctor all these years who refused to look at symptoms I would share with him over the years like carpal tunnel...I can't believe that's related to hypothyroidism! I've been having really bad body aches, especially my hips and thighs which is affecting my back and sleep in addition to neck, shoulder and carpal tunnel problems. I'm also having an absolutely terrible time with excessive fears, anxiety, anger, moodiness, sadness, crying spells and irritability - honestly I thought I was going crazy!! Really tough time concentrating, thinking clearly. I imagine most of you know what I'm going through.

I just can't get over how clueless I've been - I'm trying not to be too hard on myself as it's not going to get me anywhere except upset - at least I know why I've been feeling the way I have.

Anyways, the doc agreed to letting me get my free T3 and free T4 checked but none of the other ones I requested. I've been under a huge amount of stress which I think have also caused adrenal fatigue but he refused to test me for adrenals/cortisol.

I haven't made any changes yet because I want to get some base level tests first and start monitoring things. I don't want to make too many changes all at once because I won't know what works. I honestly feel that my doctor is not a good resource - his first response was to put me on anti-depressants even though I didn't want to - I'm not on them.

I'm looking for advice, support and understanding and for those who have made the switch from synthetic to natural thyroid- I apologize for not being clearer in my previous posts this is all very new to me so please bear with me.
AHA. That would be me. See my post below. Natural Thyroid saved my life.

I thought you meant you were just going to go cold turkey without anything. That worried me for you.

Yes, many of us are on natural thyroid after having been on synthroid. Many of us had doctors that were mismanaging our meds.

Now you sound like I did when I first came.

But to answer your question, I made the switch, thank God.

Your labs will probably come back saying they are all within "normal" range.

It tain't neccessarily so.

THAT'S where part of the problem lies.

Bring your lab results here and post them if you feel comfortable.

There are experts here who will explain what they really mean and why you are feeling so bad.

 
Old 05-06-2012, 07:23 AM   #12
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Re: Going off synthroid and healing thyroid naturally

Some questions if you don't mind:
  1. Are there natural treatments (natural hormones, etc) for low cortisol?
  2. I'm getting my free T3 and T4 checked first thing tomorrow morning. Should I take my Synthyroid before or after the test?
  3. Once on desiccated thyroid - how long does it typically to alleviate the worst of the symptoms? Particularly with lack of energy, fatique, body aches/pains and brain fog? I know each woman is different but just a rough idea because I'm just in such a terrible state right now and I want to know to roughly how long before I can start to see even the tiniest bit of improvement.
  4. I'm worried that my doctor won't know what dosage to put me on with desiccated thyroid - any advice?

Thanks!

 
Old 05-06-2012, 07:40 AM   #13
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Re: Going off synthroid and healing thyroid naturally

I don't have enough knowledge about adrenal issues to properly answer question #1.

Accurate labs can only be done if thyroid meds are taken at least 8 hours beforehand....no sooner.

Some people report a little relief from symptoms after switching to desiccated thyroid - probably due to the T3 in it (if the patient was deficient in T3). For everyone, it's usually at least 6 months if not closer to a year before levels are optimized and symptoms dissipate.

The Armour and I think NatureThroid sites have dose equivalent charts that your doctor should use. They are truly guesstimates to help prevent accidental over/underdosing when switching the patient from synthetics to desiccated.

Since everybody's body responds differently to any type of thyroid hormone, it's still going to take some trial and error to find the right dose.

If your levels were close to optimal before making the switch and you are now getting much-needed T3, you might be one of the lucky ones to be optimized within 6 months.
That's what happened to me when taking T4 only and the need for T3 arose.....I read similar on forums. (my FT4 level was optimal but, my FT3 level had dropped below optimal thus indicating the need for T3)
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Old 05-07-2012, 07:04 AM   #14
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Re: Going off synthroid and healing thyroid naturally

In terms of diet - have you any changed the foods you eat? For example, gone gluten-free or low carb, reduce/eliminated cruciferous or goitrogenic foods? Switched to coconut oil? Do you feel that's made a difference?

 
Old 05-07-2012, 07:29 AM   #15
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Re: Going off synthroid and healing thyroid naturally

Quote:
Originally Posted by oceania View Post
In terms of diet - have you any changed the foods you eat? For example, gone gluten-free or low carb, reduce/eliminated cruciferous or goitrogenic foods? Switched to coconut oil? Do you feel that's made a difference?
I am now Gluten-Free after being diagnosed with 400% more of the Gliadin antibodies than normal.
It's been a month now. Oh yeah. Big changes. No more joint pain. No more sinusitus or allergy symtoms. Dropped 8 pounds, but that may be due to the proper dose of thyroid hormones.
It isn't for the faint of heart. I ate out on Sat. where there was a gluten free menu. They accidentally glutened me anyway, and caught it but not before it was too late.
After an hour, I had joint pain and sinus issues, and felt generally terrible. The joint pain is still there today but otherwise feeling better. It isn't easy going Gluten Free. There are many foods with hidden gluten. It only takes a small amount to make you sick, after you have been gluten free.
I have no issues with dairy products.

 
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