Wean off synthroid

TheAnayalator
TheAnayalator Posts: 41 Member
edited December 18 in Food and Nutrition
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.
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Replies

  • abatonfan
    abatonfan Posts: 1,120 Member
    Unfortunately, not many of us are doctors or know your entire situation (and cannot offer a ton of advice). Personally, I would take the amount of Synthroid your doctor/endo prescribed and to discuss it with them if you want to lower the dose or stop taking it.
  • Sean_TheITGuy
    Sean_TheITGuy Posts: 67 Member
    Being a healthy weight doesn't mean your thyroid is ok. If your thyroid is severely damaged by an autoimmune disorder (hashimotos, etc) then it's like trying to expect a car engine with three blown cylinders to work like new if you touch up the paint.

    Get your TSH/T4 levels checked regularly as your doctor recommends and stay on synthroid. If you're worried about the synthetic nature, ask your Dr for Armor instead. It's a natural thyroid hormone made from, appropriately enough, dried pig thyroid glands.
  • TheAnayalator
    TheAnayalator Posts: 41 Member
    Pawsforme wrote: »
    My understanding is that once you go on thyroid medication you're on it for life. It's not like blood pressure or cholesterol where one can get it under control. When your thyroid stops working there's no getting it started again. Stay on your medication.
    That's very depressing -_-
  • kellystuart11
    kellystuart11 Posts: 11 Member
    I am also on synthroid for hypo. I've lost around 7% body fat and am still taking the same dosage. I expect to take it the rest of my life, if I lose 20 lbs and am super thin or gain 100 lbs. It sucks taking a pill every day, but rather than being disappointed by it, just accept that you most likely will take this your whole life and get it checked every 6 months.
  • TheAnayalator
    TheAnayalator Posts: 41 Member
    jgnatca wrote: »
    Awww, honey. I have been on medications for decades. I've replaced many of those with vitamins after my recent weight loss, but it's not so bad, really. Chronic conditions are just like that. Chronic is not a bad word either. It just means a condition that won't go away.

    Anyone who wears glasses is dealing with a chronic condition.

    Anyone with a life-threatening allergy will be carrying an epi-pen. It's just something they need to do.

    I understand.. I just feel like I'm only 22 I shouldn't have to be on medications for the rest of my life. I know there are people who are younger who have it way worse than me but it just sucks. Synthroid costs about $90 a month for me because the generic levothyroxine doesn't work for me.. and I hate having to remember to take it.

    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.
  • QuietInkedOne
    QuietInkedOne Posts: 15 Member
    Hi there. I am in the process of this now. I have been on Synthroid for 10 years and started working with a naturopathic doctor to try to get off of it. When my ND got my bloodwork from my MD, my levels sat at around 3. In the middle of the range by old standards. My ND thought that because my levels were at that while ON meds, I would probably not be able to go off of it. Despite their advice, I took my natural supplements and weaned myself from half dose of Synthroid over 6 weeks, then no Synthroid for 6 weeks. New bloodwork showed my levels were over 8. I am now back on the meds but only because I am terrified of gaining more weight. No matter what I do, no exercise & eating what I want or 6 day a week workouts and 1400 calories/ day, the scale does not budge more than 1 pound up or down. If my options are staying at this weight or risking gaining even more, I'll stay put I guess. I am not happy about it but this much weight has already seriously impacted my quality of life.
    I am now back on my gluten & dairy free diet, walking, doing yoga, and kickboxing and hoping for the best but I am extremely discouraged.
  • Pawsforme
    Pawsforme Posts: 645 Member
    anayapaya wrote: »
    That's very depressing -_-

    Maybe it is depressing in a way.

    But I prefer to focus on feeling very, very thankful that taking one little pill every day makes me feel SO much better than I was feeling, and keeps me healthy. In the scheme of things taking a little pill once a day isn't much of a big deal at all.

  • jgnatca
    jgnatca Posts: 14,464 Member
    Young people with cystic fibrosis are on medications for life. Similarly children born HIV positive, and type 1 diabetics. It is annoying to be young and on medication for a chronic condition. I get that. It is what it is, though. Those who love you would rather you stay on your meds and be healthy, though.

    I used these examples to reconcile myself to my son's diagnosis of Schizophrenia, who similarly will be on mood-altering drugs for life.
  • rybo
    rybo Posts: 5,424 Member
    I have a friend that had his thyroid "killed" and will take synthroid the rest of his life. Its not the worst thing that can happen to you & certainly not something to get depressed over. He leads a normal healthy life and is in great physical shape
  • Kalikel
    Kalikel Posts: 9,603 Member
    edited August 2015
    I don't have any thyroid hormone naturally, so I'm on it for life, as most people are.

    I don't know and have not met anyone who was being weaned off of thyroid medication. That's not to say it's never happened, but it's not a common thing.

    I hate taking pills and I hate timing all the different pills and timing food eating around them. It's highly annoying. But it is what I have to do, so I do it. There are worse fates.
  • VegasFit
    VegasFit Posts: 1,232 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.

    Years ago I was put on this medication and had no idea I even had hypothryoidism. I was younger and I did take synthroid as prescribed for awhile but honestly I was lazy and eventually just stopped filling my scrip and I never had any symptoms that I noticed anyways. Obviously, I would never suggest doing that but when I got more serious with my health and started getting regular blood work again and check ups I showed no signs of hypothroidsim and haven't taken the medication again.

    I can understand the frustration as $90 a month is expensive but if you feel that you should be retested why don't you see another doctor and go from there because it doesn't sound you have confidence in your doctor's diagnosis.

  • danapotter16
    danapotter16 Posts: 1 Member
    I have been on Synthroid for 9 years and I have only heard one person being weaned off but they were only on it for 6 months. I think you should get a second opinion to see if you really need Synthroid but do not try to wean off of it yourself as it can cause severe reactions. It really is not that bad of a medication as it rarely does any bad while you are on it. The reason I am even typing right now is because of Synthroid. Good luck!
  • RLeighP
    RLeighP Posts: 232 Member
    Go back to your MD, request labs done. You need to have regular labs done to check thyroid. Thyroid meds are needed if yours isn't functioning properly. Don't wean yourself off by yourself, that's very dangerous to do with any med. Adjustment of any prescribed med needs to be done by an MD only.
  • CSARdiver
    CSARdiver Posts: 6,252 Member
    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.
  • Talan79
    Talan79 Posts: 782 Member
    Get more blood work done. Maybe see an endocrinologist. My mom has been on synthroid since she was 27, now 65. My sister also has the same issue, and medicated since the age of 25, now 40. I also have never heard about being taken off. The drug is used to regulate a imbalance. My sister had had to also get adjustments on the dose a few times. I would have more blood work done if you don't think you need it. But I don't think it's something you could choose not to take. Good luck.
  • chantelleburbine
    chantelleburbine Posts: 5 Member
    Ive never heard of weaning yourself off of synthroid. I only have half a thyroid so its synthroid for life. Best of luck though if its doable to get off of it!
  • NJGamerChick
    NJGamerChick Posts: 467 Member
    I've been on thyroid medication for years. I've made it a little routine now where I get up and make my coffee and take my little thyroid pills with my coffee (not recommended for most unless you know what you're doing). My mom, who recently started taking it in low doses takes it when she wakes up with water and then dozes back to sleep until it's time to get up. We both found ways around having to deal with taking it. It works well for both of us. The alternative of not being medicated properly really isn't an option for me. We're talking fatigue, hair thinning and falling out, dry skin, weight gain, carpal tunnel, depression, etc. to go along with everything else.

    I second with the comments above about not being confident in your doctor and looking at seeing an endocrinologist. A person can learn a lot by going to a good specialist.
  • Sean_TheITGuy
    Sean_TheITGuy Posts: 67 Member
    edited August 2015
    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.


  • LKArgh
    LKArgh Posts: 5,178 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_L
    Carol_L 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.
  • umayster
    umayster 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!!

  • MonsoonStorm
    MonsoonStorm 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.
  • murphysplace100
    murphysplace100 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.
  • AnnPT77
    AnnPT77 Posts: 34,598 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.
  • amtyrell
    amtyrell Posts: 1,447 Member
    edited January 2020
    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.
  • Gisel2015
    Gisel2015 Posts: 4,189 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!!

  • dreamer182
    dreamer182 Posts: 43 Member
    edited January 2020
    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.
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