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Stopping Levothyroxine
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Stopping Levothyroxine

I have been taking Levothyroxine since December 2008. I am now 23 and reconsidering my life. This isn't about not wanting to take a pill, its about whether I am taking the right pill.

I was diagnosed with hypothyroidism after going to the school clinic for heart palpatations and having bloodwork. My TSH was 16.2. After two weeks of being on the levothyroid, my numbers were down to 8 and I was switched to Levothyroxine. My number is about 1.8 right now on 75 mcg. The reason I am rethinking it is because I have always been somewhat clumsy, but I have been bruising a lot. And I mean a lot. I wake up in the morning with huge big dark bruises and have no clue where they came from. While doing some research on that, I found that iron deficiency can cause bruising. It can also have an effect on Thyroid levels. This got me to thinking, is it an iron deficiency or hypothyroidism. Especially since last year, I found a goiter on my thyroid. It is benign so they are leaving it alone for now. But that still worries me. They told me when I started the meds that it would be easier to lose weight (I am in the low end of overweight) and that my depression would be helped. Here I am after more than 3 years of treatment 10 lbs heavier than I was then and my depression is getting worse.

My question is... Is it possible to come off Levothyroxine if the root cause of they hypothyroidism is treated?

Thank you so much for responses!
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14 Comments Post a Comment
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Avatar_m_tn
The history of how you were first diagnosed and then treated suggests that you likely have the most prevalent cause of hypothyroidism, which is Hashimoto's Thyroiditis.  With Hashi's, the autoimmune system sees the thyroid gland as foreign to your body and produces antibodies to attack and destroy the gland.  This goes on over an extended period, until the gland function is no longer functional.  The definitive tests for Hashi's are for the Thyroid Peroxidase and Thyroglobulin antibodies, TPO ab and TG ab.  Getting those tests done would confirm or rule out Hashi's.

There are no pills to treat Hashi's.  The treatment is to take replacement thyroid hormone, adequate to relieve your hypo symptoms.  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and Total T4), as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  Test results are valuable mainly during early diagnosis and afterward to track Free T3 and Free T4 as meds are increased to relieve symptoms.  

TSH is a pituitary hormone that is supposed to reflect levels of Free T3 and Free T4; however, it cannot be shown to correlate well with either Free T3 or Free T4, much less with symptoms.  Scientific studies have shown that Free T3 correlated best with symptoms, while free T4 and TSH did not correlate.  So TSH should never be used as a diagnostic by which to medicate a thyroid patient.  

You can get some good insight into the clinical treatment I mentioned, by reading this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is tent sent to the PCP of the patient to help guide treatment.

http://www.hormonerestoration.com/files/Thyroid.doc

Note this statement in the letter.  "the ultimate criterion for dose adjustment must always be the clinical response of the patient. I have prescribed
natural dessicated thyroid for your patient (Armour, Nature-Throid) because it contains both T4 and T3 (40mcg and 9mcg respectively per 60mg). This assures sufficient T3 levels and thyroid effects in the body. Since NDT has more T3 than the human thyroid gland produces, the well-
replaced patient’s FT4 will be below the middle of its range, and the FT3 will be high “normal” or slightly high before the next AM dose."


So I suggest that the first thing you need to do is to request testing for Free T3 and Free T4, along with TSH.  If the doctor resists and makes excuses, just insist on it and don't take no for an answer.  It is that important.  You should also be tested for Vitamin D, B12, ferritin, and a full iron test panel. When test results are available, please get a copy of the lab report and post results and their reference ranges and members will be glad to help interpret and advise further.

While with the doctor I also suggest you ask about his willingness to treat clinically as described in the link above.  If the doctor is unwilling to treat clinically and also prescribe T3 meds (if necessary), then you will need to find a good thyroid doctor that will do so.

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649848_tn?1357751184
There are a wide variety of thyroid medications that might work well for you, including other synthetics (both T4 and T3), along with the "natural" medications, which are derived from porcine thyroid and contain both.  We're all different, so there's no "one size fits all" medication; it's often a matter of trial and error to find the right med(s)/dosage(s).

I agree with gimel; if Hashimoto's is the reason for your hypothyroidism, the only treatment is that for the hypothyroidism.  

You do need to get the FT3 and FT4 tested, since TSH is a very poor indicator of actual thyroid function.  

You really do need to find out about that bruising.  There are various things that can cause it, in addition to iron deficiency.

A goiter is simply a swollen/inflamed thyroid.  Do you mean you have a nodule on your thyroid?  Nodules are very common with Hashimoto's, and are usually not a concern unless they exhibit unusual characteristics or begin to grow more rapidly.  Thyroid cancer is actually quite rare, but is one of the easiest to treat.
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2087589_tn?1332597196
The doctor said it was a goiter. It is a "fluid nodule" and is nothing unless it gets bigger or bothers me. That is what he said. I generally don't put a lot of faith in what he says, but this being something I know nothing about I believed him. I am going to get the blood tests soon and I will post results asap!

Thank you both for your quick responses.
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168348_tn?1379360675
Please keep us posted and welcome to our community!
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2087589_tn?1332597196
I go to the doctor on the 9th to talk to him about the blood tests. I originally had an appointment for May, so that was the earliest he could get me in. That means I should have my results by the 13th.
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Avatar_m_tn
Please make sure that they do all the tests I suggested above.  Also, please make sure they test for Free T3 and T4, not Total T3 and T4.  I would also like to add one more test, Reverse T3.  
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Avatar_m_tn
I'd add Vit B-12 and also Vit D3 and iron & ferritin. in addition to FT3, FT4 and RT3.

fight for all of them but especially for the FT3 and FT4.  Do not take no for an answer and as gimel stated make sure it is FREE hormones and not total.  Total is an outdated test of little value. your body ONLY uses the free hormones so that is why you want to be sure to get the "free" tests.

Free means that the hormone is free from being attached to a protein.  Once attached to a protein molecule the hormone is useless.  Total counts BOTH free and bound hormone. But as stated your body only uses the Free T4 to be converted into T3. And the body's cells ONLY uses the free T3 hormone.
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2087589_tn?1332597196
I had him do all my normal blood work on top of the ones everyone suggested. I will post what everyone suggested:
T3: 121
FT3: 3.1
FT4: 1.2
T4: 11
Iron, Total: 101
Iron binding capacity: 413
% saturation: 24
Ferritin: 106
Vitamin B12: 630
Vitamin D: 27

I have so many other numbers here but the only ones that were not good were my total cholesterol (There are some genetic issues in my family and I'm working on that through diet) and Vitamin D. He is having me start Vitamin D supplement.
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649848_tn?1357751184
Please provide the reference ranges, since these vary lab to lab and must come from your own report.

Was there a TSH done?

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2087589_tn?1332597196
TSH was not done. I'm not sure why because I know it was on the lab order. Either it wasn't done or I am completely missing it.

T3: 121 -- 76-181 ng/dL
FT3: 3.1 -- 2.3-4.2 pg/mL
FT4: 1.2 -- 0.8-1.8 ng/dL
T4: 11 -- 4.5-12.0 mcg/dL
Iron, Total: 101 -- 40-175 mcg/dL
Iron binding capacity: 413 -- 250-450 mcg/dL
% saturation: 24 -- 15-50% (calc)
Ferritin: 106 -- 10-154 ng/mL
Vitamin B12: 630 -- 200-1100 pg/mL
Vitamin D: 27 -- 30-100 ng/mL
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649848_tn?1357751184
Your FT3 and FT4 are still less than optimal.  

Your FT4 is only at 40% of the range, while most of us feel best with it about mid range.  Your FT3 is only 42% of the range and most/many of us feel best with it in the upper 1/3 of the range.

Your vitamin D is too low; did your doctor recommend that you supplement? While your B12 is about 1/2 the range, you might want to think about supplementing.  I have to inject weekly, in order to keep my level right at the top of the range, in order to feel good.
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Avatar_m_tn
Also some people who get their thyroid hormone levels optimized they find their cholesterol also is reduced to normal levels.  (High cholesterol is a symptom of low thyroid).
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2087589_tn?1332597196
Wow. I did not know that High cholesterol is a symptom of low thyroid.

Also, I have begun supplementing with D. 1000 IU daily. He didn't say anything about my B12, but now that you mention it, I will definitely look into it.  I go back in 3 months to have all my thyroid and D checked again to see if supplementation has helped.
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649848_tn?1357751184
Yes, high cholesterol is a symptom of hypothyroidism.  My cholesterol follows my thyroid levels pretty closely - thyroid levels go up, cholesterol comes down, thyroid levels go down, cholesterol goes up.

I'm not surprised that your doctor didn't mention your B12, because, like I said, it's mid range and doctors will look at it and say it's good; however, I know that I have to keep mine way at the top of the range in order to feel well.
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