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Wean off synthroid

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  • Sean_TheITGuySean_TheITGuy Member Posts: 67 Member Member Posts: 67 Member
    anayapaya wrote: »
    On top of that, I feel like I was Miss diagnosed from the beginning. I went to the doctor for a routine check up and she said my thyroid levels were a bit off. Then she immediately put me on synthroid without testing again... I've been on it ever since. I feel like maybe she should have tested me a few times before giving me the drug, but I was only around 18 years old so I didn't really think about what it was. I didn't know it was going to be long term either.

    Other factors can affect your thyroid levels. It's possible, but not entirely probably, that you were misdiagnosed. If I were you, I'd see your doctor (or get a new one if you're uncomfortable with yours, as you seem to think she's not working in your best interest) and ask to be tested again. Before being tested, however, you should stay on whatever level of synthroid you are supposed to be on for a period of a few months (2 or 3). Take it consistently, always an hour before food with plain water.

    The TSH that is tested on thryoid bloodwork is "thyroid stimulating hormone". It's basically the body's "gas pedal" for your thyroid. The T4 tested is an indicator of the amount of stuff your thyroid is making.

    My thyroid was essentially non functional. When I went in for bloodwork, my TSH was sky high. A normal is 0.4 - 4.2, I think. Mine was 21. Essentially, my body had the gas pedal to the floor (and then some) and my thyroid was all "I'M GIVIN' 'ER ALL SHE'S GOT, CAP'N!" and only releasing a tiny trickle of the hormones required.

    If your TSH is in the low end of the normal range on the level of synthroid you're on, maybe you can ask the doctor to back you off a bit. Wait a few months, test again, etc. If you start to see your TSH creep back up into the high end of the range, you'll know that you have found the appropriate amount you should be taking.

    It's not depressing to have to take medication. Its not more shameful than a diabetic needing insulin. Make it a part of your personal bathroom routine in the morning and get on with enjoying life.


    edited August 2015
  • LKArghLKArgh Member Posts: 5,171 Member Member Posts: 5,171 Member
    anayapaya wrote: »
    Anyone who has hypothyroidism, can you please tell me if you were able to wean yourself off of the synthetic drug synthroid? I have had hypothyroidism for about 4 years and I have decreased my dosage from 100mg to 50 mg. I am praying that there is hope that I will never have to take this drug again once I'm healthy.

    What you are trying to do is idiotic. Sorry for being this harsh, but there is no other word for experimenting on your own with hormones.
    If you doubt your diagnosis, get a second opinion. If you doubt your dosage, discuss it with your dr. It should be checked and possibly adjusted every 1-2 years anyway. If you are on some exceptionally expensive brand, ask for an alternative, my levothyroxine pills cost 3 euros per 50 pills, and they are not even generic.
    But do not experiment. And if you read about magical natural remedies on the internet, run away.
  • Carol_LCarol_L Member Posts: 296 Member Member Posts: 296 Member
    I cannot emphasize enough that this is not something you want to mess around with on your own.

    Consider yourself fortunate to have been diagnosed so early. I spent my late teens and the entirety of my 20's starving myself to keep any kind of semblance of a normal weight - when I didn't, I gained quickly and it was impossible to lose it eating anything more than 600 calories a day.

    I found myself to be abnormally cold much of the time, had anemia, depression, and a host of other seemingly unrelated issues that I couldn't figure out what was happening.

    Accepted medical wisdom at that time was that unless you had had a child or were over 50, hypothyroidism was rarely considered. It was only when I saw a gynecologist for menorrhagia that I was actually diagnosed.

    The effects of thyroid deficiency can manifest themselves slowly, and you might attribute some of these things to other conditions when taken separately. By the time I found out I had hypothyroidism, I had gained a lot of weight, had severe depression, very low blood pressure (had passed out suddenly on several occasions and was damned lucky that those times it happened were in places where the worst thing that happened was getting a few bruises), anemia due to having (at that point) a heavy 6 month long period, and was borderline hypothermic (body temperature 94.8 as opposed to 98.6). You do not want to get to that point.

    Losing the weight has been a hard slog, and is still a work in progress. There have been setbacks but that usually coincided with a requirement to change my dosage. Thyroid affects everything from your ability to conceive to cholesterol levels. That little bit of knowledge (about cholesterol) saved me from having to get onto cholesterol medications by having my levothyroxine dose adjusted.

    There are some good resources out there on hypothyroidism, but if any one or any site that tells you that you can 'cure' yourself of this condition RUN, quickly, in the other direction.
  • umaysterumayster Member Posts: 651 Member Member Posts: 651 Member
    If you tried to switch to generic and it did not work then that is a sign that you really do need drugs. The problem with self weaning is that you really can't tell how much you needed it until 6-12 months down the road when you are miserable - and then it will take at least another 6 months to feel better with dosage reintroduced.

    $90 is too much to pay - online quotes were about $35/mo for sythroid and $25/mo for armour from assorted chain stores with pharmacys. Shop your prescription!!

  • MonsoonStormMonsoonStorm Member Posts: 371 Member Member Posts: 371 Member
    Ironically coming of your thyroid meds will probably show you what depression truly is...

    Stop self-adjusting and talk to your doctor.
  • murphysplace100murphysplace100 Member Posts: 1 Member Member Posts: 1 Member
    I am not a doctor, nor am I suggesting you should try anything without doing your own research. This is my opinion and experience once I had researched and spoken to several medical doctors who specialize in"Functional Medicine" (gets at the root of the problem, not treat symptoms). You can wean yourself of Synthroid (t4) and Cytomel (t3) if your hypothyroidism is caused by low progesterone, bad diet, low selenium, low iron, low iodine. I did. An imbalance of hormones can throw your thyroid off balance which is what happened to me. You can also have what is called "estrogen dominance" which means you have too much estrogen in comparison to progesterone. In addition, you can also have a normal or low estrogen level yet still be estrogen dominant which is what also happened to me. Only a Function medical doctor can determine that, Conventional doctors go by a different scale. Have a Functional doctor do labs for all hormones, selenium, iodine, iron, iodine to ensure they are within normal range. If you do not have Hashimoto disease, or your thyroid has not been removed, then it can be done. My functional doctor temporarily placed me on Synthroid and Cytomel (t3 med) to eleviate my symptoms while he balanced my hormones. He also did a food allergy test. He had me change my diet and take two tablespoons of a liquid probiotic per day. He stated I should get the majority of my nutrients from food, not vitamins, with the exception of d3 4,000 mg. He then "slowly" kept decreasing my dosage until I no longer take thyroid medication anymore and I feel great. Now he did tell me he has had success with Hashimoto and weaning off. And I have been on forums where people stated they were able to go off thyroid meds with Hashimoto. However, I will leave it up to others to do their own research.
  • AnnPT77AnnPT77 Member, Premium Posts: 21,559 Member Member, Premium Posts: 21,559 Member
    CSARdiver wrote: »
    If you need Synthroid - you need that for life. Thyroid glands do not increase output. Don't think of this as a negative - think about how lucky you are to live in a time where this is treatable by taking a pill daily!

    Go to your physician, endocrinologist hopefully, and request a full thyroid panel: TSH, Total T4, Free T4, Total T3, Free T3, and RT3.

    Never alter your Synthroid dose without specific direction from your physician. Decreasing this dosage can cause a myriad of other medical consequences, particularly to your pituitary gland.

    He's too modest to point it out, but in the quoted post, you're hearing from an actual scientist whose work has been with this condition and these drugs. Listen.

    I'm hypothryoid, too. I'll take levo for the rest of my life.

    See your doctor, or a new one if your current one is unhelpful. You could perhaps stop if you were misdiagnosed in the first place, but that's something that would be determined by blood tests, not by how you feel. It can't be determined by how you feel.

    If you're unable to afford your essential medications, look into drug company assistance programs, or other sources of aid. Don't just stop taking it.
  • amtyrellamtyrell Member Posts: 1,449 Member Member Posts: 1,449 Member
    Perhaps instead of thinking of it as depressing that you have to take meds likely for life or a really long time you could view it differently.
    Instead
    Wow isn't it wonderful that due to medical science I hsve a method of dealing eith my medical issues that greatly increases my quality of life. Also science improves over time so perhaps some day new research will make treatments that are even better.
    edited January 2020
  • Gisel2015Gisel2015 Member Posts: 3,979 Member Member Posts: 3,979 Member
    Anyone who has hypothyroidism, can you please tell me if you were able to wean yourself off of the synthetic drug synthroid? I have had hypothyroidism for about 4 years and I have decreased my dosage from 100mg to 50 mg. I am praying that there is hope that I will never have to take this drug again once I'm healthy.

    I wouldn't even try!!!! If my thyroid levels are within my normal range is because I am taking meds. Talk to your doctor or endocrinologist!!

  • dreamer182dreamer182 Member Posts: 36 Member Member Posts: 36 Member
    I am almost a licensed pharmacist (graduate in May) and am 22 years old as well. Hypothyroidism due to Hashimoto's is not something you can "cure". It is an autoimmune condition that you will unfortunately have for the rest of your life. I am currently slightly UNDERweight, yet I still take it because my thyroid does not function properly and I have Hashimoto's as well as other autoimmune conditions.

    However.... there are things you can do to make sure your medication is working properly! Most importantly, be sure to actually follow the instructions to not take it with food or other medications. This actually does inhibit the absorption of it and your doctor may be increasing your dose because he thinks you need more drug when actually your body isn't absorbing it properly. I wait two hours to eat breakfast after taking it. Its been shown that in some people it actually takes 5 HOURS to absorb fully. My levels improved so much after waiting longer to eat. Please please please do not change your dose without talking to your doctor first. Thyroid medication is a very narrow therapeutic index drug and even a slight change in dose can really affect your levels.
    edited January 2020
  • kimny72kimny72 Member Posts: 15,931 Member Member Posts: 15,931 Member
    Just a heads up that the OP and most of the thread happened 5 years ago, so whatever was done is done. But it's never a bad time to stress that you should never alter your dose of any Rx without consulting with your doctor. :smile:
  • Gisel2015Gisel2015 Member Posts: 3,979 Member Member Posts: 3,979 Member
    @ kimny72
    Oh dear, I need to put more attention to the date of the original posting. Darn! The good thing is that I am not alone. Thanks.
  • Nony_MouseNony_Mouse Member Posts: 5,647 Member Member Posts: 5,647 Member
  • AnnPT77AnnPT77 Member, Premium Posts: 21,559 Member Member, Premium Posts: 21,559 Member
    Suckered by necro thread again: Need to get my guard up. ;)
  • Carlos_421Carlos_421 Member Posts: 5,084 Member Member Posts: 5,084 Member
    If you want a second opinion from another doctor, get one.

    But if you have hypothyroidism, you need the synthroid and can't just wean off it and expect the hypothyroidism to be gone. For the sake of your health, take it as prescribed until a doctor tells you otherwise.
  • Carlos_421Carlos_421 Member Posts: 5,084 Member Member Posts: 5,084 Member
    AnnPT77 wrote: »
    Suckered by necro thread again: Need to get my guard up. ;)

    me too
    source.gif
  • Gisel2015Gisel2015 Member Posts: 3,979 Member Member Posts: 3,979 Member
    AnnPT77 wrote: »
    Suckered by necro thread again: Need to get my guard up. ;)

    You and me both; but don't worry it seems that we have more company coming... :D Hi Carlos, what's up?
    edited January 2020
  • bekahlou75bekahlou75 Member Posts: 304 Member Member Posts: 304 Member
    Hypothyroidism doesn't just go away. I don't know your insurance situation, but maybe you should go see an endocrinologist. This is part of their specialty.
  • gothchiqgothchiq Member Posts: 4,597 Member Member Posts: 4,597 Member
    Synthroid didn't work for me, I still felt horrible, so then I was switched to Armour Thyroid so that I get both T3 and T4. Armour is natural, if you don't like synthetics, as it is made out of pig thyroids. Once your thyroid is shot, it doesn't fix itself. Trying to get off your meds may not work out all that well. I second what others say about speaking to an endocrinologist.
  • ktlynn447ktlynn447 Member Posts: 38 Member Member Posts: 38 Member
    NP here... you will likely need this for life. DO NOT make any dose changes on your own.. always consult with your provider first! Your provider should also be able to help you out with programs if affordability is an issue since this is an essential medication for you. Also.. I'm sorry that it sounds like this wasn't really explained well to you from the beginning.... it is generally not something that we repeat testing for once labs have verified abnormal levels.
    edited January 2020
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