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DNBNFAT's Photo DNBNFAT Posts: 80
6/12/09 7:23 P

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Hey there.I understand wanting to be off the meds.BTDT.It was not a good choice.Try 40+ lbs of a bad choice and chronic depression.It did get my Dr to switch me to another brand of Thyroid medication that worked a lot better then the synthetic Sythroid or Lyvoxil.Ask for Armour.For the first time in nearly 12 years I have a normal body temp. of 98.6 and I had been running at 96.7.I lost 10lbs without trying hard.Sometimes it is the medications and needing to switch things up.I still have issues with being compliant on my treatment plan but each person has to decide for themselves.Know your risks and make a educated choice.

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CD5368708 Posts: 64
6/8/09 6:20 P

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I've been on Thyroid HRT (hormone replacement therapy)for over 15 years and just today I learned NOT to take my calcium with the Levoxyl. WHO KNEW! At least I knew about the soy products.

I have to urge you not to go off this medication without your doctor's approval Think of it like insulin. A diabetic without insulin replacement may slip into a coma within about 3 days. We, without our thyroid replacement hormones may slip into the same coma in about 45 days.

I also learned about the walnuts and the fiber. (see below) This is terrible. I had just learned that by ingesting a full daily recommended amount of fiber per day would burn 300 calories just by working itself through your body. I've been having fiber additives for the past 90 days or so. I even found a yummy low cal, candy type version.

Walnuts are my favorites and a good high protien snack. This just keeps getting better and better.
I added the link and if it didn't work, I've added the excerpt.
Good luck to you,


"Consumption of certain foods may affect Levothyroxine absorption thereby necessitating adjustments in dosing. Soybean flour (infant formula), cotton seed meal, walnuts, and dietary fiber may bind and decrease the absorption of Levothyroxine sodium from the GI tract."

74.125.95.132/search?q=cache:tdk-gBl
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7IJ:www.drugs.com/pro/levothyroxine.R>html+www.drugs.com/pro/levothyr
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BR>20A73055236&cd=1&hl=en&ct=clnk&gl=us


WILLOWWINDS's Photo WILLOWWINDS Posts: 3,953
6/8/09 11:54 A

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I have had thyroid issues for a long time.
I started on levth. (generic of synthroid) 50m

Then I did a High Protein diet which consisted of a lot of SOY protein. I was a mess. I was so severely depressed all I did was lay in bed. I was crying what seemed like 24/7.
Soy makes the medicine not work. I was eating 800 to 1000 calories a day for almost 2 years and gained 60 lbs.

I am now on 350 m a day. Yes not a typo 350.
My last blood work my reading was 4.2

The nurse practitioner won't consider upping my Med's. I read an article saying new guidelines should be 3.0 or lower.


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EL2339's Photo EL2339 Posts: 49
6/7/09 12:49 P

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Hello. I was diagnosed with hypothyroidism almost 10 years ago. I had been taking .125 synthroid all this time. I am very active and otherwise very healthy. I want to caution you about going off the thyroid meds. I tried discontinuing synthroid about 8 months ago and I went through hell. I lost energy, got moody, depressed, achy muscles, generally felt very poorly. I went back on the .125 again and after 8 weeks my thyroid is still not where it needs to be and blood results show I now need .137. True, taking meds on an empty stomach is bit of an inconvenience but compared to physical symptoms, it's a blessing.

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HUMANBEES Posts: 28
6/7/09 12:08 A

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hi queenmeme

any updates? i'm really curious about what you've learned and your experience so far.

thanks and good luck!

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QUEENMEME's Photo QUEENMEME Posts: 81
4/14/09 2:25 P

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thanks! I'm working with a natural healer who projects that I should be off the meds within 2 years or so.

HUMANBEES Posts: 28
4/14/09 1:26 P

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hi.

i also have graves, but luckily still have my thyroid. I am taking tapazol.

I have done some of my own research on ways to affect thyroid function through diet. certain foods, such as broccoli, cabbage, and soy increase thyroid function. I generally avoid these foods, but you may want to eat lots.

The key thing with Graves is to do everything extremely gradually. Wean yourself off of the pills as you replace them with whatever you decide to replace them with. Wait until your labs come back hyper before you reduce your meds. Make extremely small reductions. Take as long as your body needs to adjust. If you are on meds for another couple years, it will be worth it to have a functioning thyroid.

I support your decision, and I wish you the best. I look foreward to hearing how this goes for you.

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QUEENMEME's Photo QUEENMEME Posts: 81
3/16/09 8:25 P

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Thanks for linking the article Mizzchief. I'm ready to give it a go. I see the natural healing doc on Saturday and I'm looking forward to hearing what she has to say.

I am giving my body a chance to heal. I'm taking it like it was a nuclear accident, which in some ways it was.

It's not that I'm not doing well on medication. It's that I'm not going to be on medication for the rest of my life. RAI was an uninformed decision made under pressure and now I am going to do something to heal myself.

anyway, like I said, thanks everyone for your concerns. Was looking more for people who had taken a course like mine but guess I'm unique ;). I'll keep you all posted on my progress.

MZZCHIEF's Photo MZZCHIEF Posts: 10,408
3/16/09 5:40 P

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hey Queenie!

Coupla things...

First... here's a hyperlink to your article on Thyroiditis, to make in easier for others to get to.

In the future, if you'd like to hyperlink your articles look for the "add a link" option on top of your message composition box. Its the blue and white box in the middle.

emedicine.medscape.com/article/12549
7-
overview


Like Purr indicated, subacute thyroiditis is a relatively rare condition.

Thyroditis is usually viral in origin and resolves itself leaving the patient with either normal thryoid function or slightly hypothyroid. Rarer still, its caused by bacteria and can be stopped with an antibiotic.

I know that you included this article because you wanted to show that the thyroid can heal itself. And in the case of thyroiditis, that's often true.

There are other circumstances under which normal thyroid function is restored, granted this is if the thyroid has not been substantially damaged in the progression of the disease.

Those conditions are:

1. Following an episode of post-partem thyroditis
2. Spontanteous remission of auto-immune disease
3. Stopping medications that cause thyroid disease in some individuals if enuf healthy thyroid tissue remains.
4. Thyroid surgery for goiter or nodules where a portion of healthy tissue has been left behind
5. Following RAI if the thyroid has not been completely ablated and enuf healthy tissue has survived.

In ALL these situations, you'll know that your thyroid is healing, when you need less and less thyroid medication to maintain a healthy TSH.

At that time, your dosage of thyroid hormone will be decreased until you don't need it anymore.

The goal is to keep everything running smoothly, if and when the thyroid is ready to resume its job. It may, however, claim disability for the remainder of your life, and you have to be prepared for that!

What potentially can occur following RAI if you STOP your meds now, is that any remaining thyroid tissue will enlarge to become a goiter to meet the sudden demand for thyroid hormone that every cell in your body needs to survive.


Believe me, no one here WANTS to be on replacement thyroid hormone. But we all NEED to be for our health, until our bodies indicate otherwise.

Just to put your mind to rest with regard to "additives" in thyroid medications... if your the typical Jane Doe, you get a staggering amount of additives from the processed foods, vitamins and supplements in your diet. I don't know how pure your diet is, but just check the labels of even simple foods like cottage cheese, bread or yougurt for a reality check.

The amount of fillers/binders/excipients in your thyroid meds are truly miniscule by comparison.

If you're not doing well on one medication, the trick is to switch to another brand, not just chuck the whole thing!

Realitically, Queenie...right now, at your current dose of thyroid hormone, you are not a good candidate to go cold turkey off your meds.

Please consider what I've written here. I've thought about you all weekend and I am concerned.

: )
Mzzchief








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GRAMMYTINK's Photo GRAMMYTINK Posts: 1,640
3/16/09 3:44 P

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I had a problem with the med I was on for my thyroid and when I tryed to talk to my dr. he said I was depressed and wanted to put me on depression meds, but I wouldn't go on it so I stopped taking my thryoid med and didn't go back to the dr. After a year I started to feel tired again so I found a new dr. She put me on the same meds at a higher dose and I got moody like before so I told her and she put me on another kind of thyroid med and it helped. I got energy back and feel better. I go next month for my blood work and am hoping the dose is right and they don't have to up it again.

I TAKE ONE STEP AT A TIME AND HOPE I KEEP GOING FORWARD


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QUEENMEME's Photo QUEENMEME Posts: 81
3/16/09 1:43 P

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The only reason i mention subacute thyroiditis is to highlight the fact that a damaged thyroid gland can, in fact, regenerate.

PURRBALLS's Photo PURRBALLS Posts: 7,966
3/16/09 12:57 P

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not to mention subacute thyroiditis is an uncommon and specific occurrence. It is NOT the norm and a doctor should be able to diagnose it.

If you get stressed out eat some catnip and go to sleep

“Many of life's failures are people who did not realize how close they were to success when they gave up.” Thomas Edison

If you soap or make bath/body/candle products join us at the soapers and chandlers sparkteam!

The Seven Dwarves of Hypothyroidism: Itchy, *itchy, Sweaty, Sleepy,
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ENSIGNMOM's Photo ENSIGNMOM SparkPoints: (0)
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3/16/09 9:49 A

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I have a health nut sister that always tries to get me to go off my meds...if they are replacing my body's ability to do EVERY METABOLIC FUNCTION...how could I possibly handle tthat myself? Sounds extremely optimistic dangerous and frankly a bit irresponsible...I am afraid to wish you good luck...I disagree with what you are doing... people go to medical school for a reason. If you don't like your doctor find a new one. If you don't like your treatment find a new one, but just thinking you canc reate a treatment yourself is a little sketchy! I usually don't preach, but be careful.

You can''t begin to discover the sea until you leave the shore behind.


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HIPPIEGURL's Photo HIPPIEGURL Posts: 5,062
3/13/09 11:20 P

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Hello USE2BAGODDESS,

You mention that you take your meds with a drink of water.....it's important that thyroid meds are taken with at least 8 ounces of water to be properly absorbed into the system.

Sandy

Sandy



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QUEENMEME's Photo QUEENMEME Posts: 81
3/13/09 10:13 P

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I refreshed my pharmacology (it's been a while ;) ) and while l-thyroxine is "identical" to the endogenous hormone, all the additives in the pill are not.

I am doing more research into the regeneration. in subacute thyroiditis, the thyroid regenerates (http://emedicine.medscape.com/article/125
497-overview). If the thyroid is not totally destroyed after RAI, which I don't think mine was, there is a capacity for regeneration and I am going to exploit that. I will be doing much more research on this and I will keep you updated.

CSONJADEE's Photo CSONJADEE Posts: 124
3/13/09 9:49 P

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Queenmeme,
Good Luck, I hope you lower the dose and do not stop all at once. That could be very dangerous. I also would like to know how you are coming along. I would like to know how to jump start a thyroid that has stopped working all together. emoticon

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USE2BAGODDESS's Photo USE2BAGODDESS Posts: 2,703
3/13/09 9:32 P

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If you have hyperthyroidism and are really determined to try to get off of the med's and go natural look at Andrea Beaman's website. I saw her on tv and she healed her hyperthyroidism and helps others.

http://www.andreabeaman.com/

I take Armour but for hypothyroidism. I also take it at 3am. I turn the cap on my medicine bottle upside down (it makes a cup shape) and put my 3 tiny pills in the cap. I set a short glass of water next to it and then set the alarm on my phone. When it goes off I pop the pills in my mouth take a drink and roll over and go back to sleep. No problems!

I wish you the best of luck!

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MZZCHIEF's Photo MZZCHIEF Posts: 10,408
3/13/09 8:01 P

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Queenie

Good luck with your thyroid experiment. We'd all be very interested to hear any progress you make on that front.

I fully undertand your desire to be off meds.
I went thru the same thing myself when I was first dx'ed.
But my body forced me to acquiesce to a daily thyroid hormone replacement pill.

Q, whether you disagree or agree with it, the fact is that levothyroxine sodium (T4) IS a hormone.
Levothyroxine is rendered identical to thyroxine by the digestive process and the liver.
Thyroid hormone is needed all over the body for a variety of cell functions, including DNA replication.

It is the same compound regardless of whether you take Synthroid or Armour.
The main diff between these two is that Armour has additional things in it that Synthroid does not, like T1, T2, T3 and calcitonin.
But the T4 portion of it is the same.


We would be interested in knowing what you have read about thyroid regeneration.
Would you please share your sources and outline your plan of action?
thx

: )
Mzzchief




New decade. Big world.
Hello, 60!
Primum non nocere.

Never underestimate the value of getting out of your own way.

Team leader of Thyroid Community. www.sparkpeople.com/myspark/groups_i
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QUEENMEME's Photo QUEENMEME Posts: 81
3/13/09 5:56 P

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Thanks for the input Sparkers. I will keep you posted as I embark on this journey. I am well aware of the risks of hypothyroidism, but the benefits of being euthyroid without pig hormones are worth it to me.

and I'll check out body logic, thanks!

Edited by: QUEENMEME at: 3/13/2009 (17:56)
PURRBALLS's Photo PURRBALLS Posts: 7,966
3/13/09 5:36 P

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I take armour and it's natural...it's hormones...not meds. I was on synthetics before for years but I was UNDERTREATED. As a result I had a heart attack. It's your choice obviously but you are ARE taking risks. It's not just how you feel or weight.

If you get stressed out eat some catnip and go to sleep

“Many of life's failures are people who did not realize how close they were to success when they gave up.” Thomas Edison

If you soap or make bath/body/candle products join us at the soapers and chandlers sparkteam!

The Seven Dwarves of Hypothyroidism: Itchy, *itchy, Sweaty, Sleepy,
Bloated, Forgetful and Psycho


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PUGGY2's Photo PUGGY2 Posts: 5,527
3/13/09 4:53 P

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You might check out Body logic MD

BE


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TLLONG Posts: 8
3/13/09 3:47 P

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Hi Queenmeme! I feel the same way. I have taken myself off my meds several times, all I got was yelled at by the doctor, She named condtions to many to list. It scared me back on my meds. But in the end it is your body your chose. Please becareful I would not like any thing bad to happen to you. You stated you are doing research on the subject about thyroid please let me know what you find out. I would really like to know also. I do not have any natural healing docs around where i live. Thanks Good Luck!

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LESLEYJ2 Posts: 126
3/13/09 3:02 P

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Hi, Just got back from vacation and yours was the first I read. When I initially had my thyroid problem I read every book I could find. Very scary to go off thyroid medication, because your thyroid can effect your heart function. Please check with a doctor first. Take care

QUEENMEME's Photo QUEENMEME Posts: 81
3/13/09 2:19 P

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Haven't tried it, but I may if the natural route doesn't work. My goal is to be off any thyroid medication...

PUGGY2's Photo PUGGY2 Posts: 5,527
3/13/09 2:12 P

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Have you ever taken Armour thyroid, it's a natural thyroid med.

BE


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QUEENMEME's Photo QUEENMEME Posts: 81
3/13/09 1:47 P

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Susannah you are lucky that you had the support/forethought not to go through it!

I will get my labs checked in a month or so to see how I'm doing.

QUEENMEME's Photo QUEENMEME Posts: 81
3/13/09 1:46 P

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Thanks Darthlaurie.

I disagree -- thyroid drugs are not hormones, they are synthetic hormones (hence "levo"thyroxine -- they are oriented differently because or else the body would digest them before they could reach the bloodstream). So that puts them in the"unnatural" "drug" category for me.

I agree that there is a risk to going off the medications, but it is a risk I am willing to take. I have a good understanding of the thyroid gland and it's numerous effects on the body. I just wish I had hadthat knowledge *before* I did the RAI.

The worst thing that can happen is that I get hypothyroid. And I can catch that way before I go into a coma... ;)

SUSANNAH's Photo SUSANNAH Posts: 2,283
3/13/09 1:44 P

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It sounds like you've thought it through. If nothing else, make sure you get labs done frequently enought to keep your system in check! You are lucky to have some thyroid fuction.

It's stories like yours, that make me glad I listened to my gut, and didn't do the RAI!

Patience and Fortitude - Mom

There ain't a thing I've faced that's been too much for me - Classified "Inner Ninja"


DARTHLAURIE's Photo DARTHLAURIE Posts: 2,579
3/13/09 1:41 P

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First off, thyroid drugs aren't drugs, per se. They're hormones. There's a difference between hormones and drugs in my book.
Frankly, I think going off your thyroid medicine is risky at best...not because of the weight loss issue, but because of how much work your thyroid does to regulate your body...but that's your choice. If you really want to get off anything a physician prescribes, you should taper off slowly so your body has time to adjust. Also, make sure you notify your physician of what you're doing so that if something goes wrong, they'll be up to date and they can take that into consideration when you need to be treated.

*bounce!*


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QUEENMEME's Photo QUEENMEME Posts: 81
3/13/09 1:41 P

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Thanks Susannah. To me, taking drugs is a burden I'm no longer willing to live with. I hate having to have an empty stomach, worrying about eating food with iron or calcium, etc etc etc.

I am very in tune with my body and I have a medical and scientific background so I am doing all the research I can on thyroid regeneration, etc. I also am scheduled to see a natural healer who claims experience with taking people off synthetic thyroid.

I do like the last endocrinologist I saw, so I will keep his number in case I need him!

SUSANNAH's Photo SUSANNAH Posts: 2,283
3/13/09 1:36 P

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My personal opinion is that it's worth being on meds if it makes you feel better. I don't like taking meds either, but I also didn't like the way I felt before I was diagnosed. I have Graves, and I was very Thyroid Toxic the first time I went to the Endo. Gradually, over almost 3 years I've been weened off drugs. He wanted me to do the RAI, but I said no. He respected my decision. What you need to do, is find a doctor who works with you to get you on the minimal dosage of meds, and combine that with other changes, maybe you can be off meds all together. I've heard a lot of chatter in this community about bad doctors and Endos, but there ARE good ones out there. You just have to find one! They are probably the ones that book 6 months in advance...like mine!

Good luck, be careful taking it in your own hands. You'll need to be very in-tune to your body!

Patience and Fortitude - Mom

There ain't a thing I've faced that's been too much for me - Classified "Inner Ninja"


QUEENMEME's Photo QUEENMEME Posts: 81
3/13/09 1:30 P

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Thanks for the reply. I started out at 100 and slowly have been going up up up (like when I was pregnant, then it never went down again). I think I am making myself dependent on them.

I do have the good sense to go back to a doctor (hate it as I do) if I can't control it myself. But I'm going this route first.



CRAZEPUPPIES's Photo CRAZEPUPPIES Posts: 3,909
3/13/09 1:24 P

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Well no experience since I've been taking medication. But 137.5mcg is a lot of medication, and you might want to consider taking it until it levels out and your dosage needs to be lowered. I was taking 100mcg for 5mths and after I lost 30lbs it was lowered to 75mcg and as I lose more weight it may needed to be lowered again.
However, last year before I knew I was hypo I exercised everyday of my life for at 2 hours, ate almost nothing and put on 30lbs in about 6mths. No the weight didn't immediately come off when I started levo, but since I am on the correct dosage it isn't too much of a struggle to lose weight.
I understand that a lot of people have issues with taking medications for so long. I only take two and I consider them both necessary, the levo and BCP and I take a multi-vitamin. I don't feel that it is right to take a pill for everything in your life, so if you feel as though you can make adequate adjustments in your life then go for it. I also hope that if in a few months from now and you are not doing any better, I would hope that you will see a dr. again.

~Mary


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QUEENMEME's Photo QUEENMEME Posts: 81
3/13/09 12:11 P

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Hello!

So... I had Graves' disease and RAI (wish I had never done that, but that's another story). Now I am on 137.5 mcg levoxyl, and I'm tired of being on drugs. So I am going to fix myself. I haven't taken it in a week and I'm feeling okay. I am going to up my exercise and find any natural ways to get myself off this drug. I still have some thyroid function, so I am going to work to make my thyroid function like it needs to. I know it sounds crazy. Anyone have any experience with that?

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