Thyroid medication (Synthroid) is one of the most commonly prescribed medications in the United States.
But do all of those people who take Synthroid (or any other type of thyroid medication) have to do it forever?
Not necessarily, and that’s something I want to explore in this article.
Article highlights:
- People start taking thyroid medication because of blood tests, but these blood tests are not 100% accurate.
- Some people who start taking thyroid medication may be able to eventually wean themselves off.
- Doctors aren’t likely to make this suggestion, though, unless you bring it up.
- Some individuals may require thyroid medication for the rest of their lives (but not everyone).
- If you decide to try and get off thyroid medication you must do it slowly and controlled.
Why People Start Taking Thyroid Medication
This topic should really be “why doctors prescribe thyroid medication”, but the point still remains the same.
The only real reason to start taking thyroid medication is that your body isn’t able to produce enough thyroid medication on its own.
If this happens, then you will be at a deficit that must be replaced and supplemented with some amount of oral thyroid medication.
This isn’t necessarily a problem, but the problem does start to arise when we talk about how doctors determine if your thyroid is functioning well or not.
The main way that doctors do this is through a test called the TSH or thyroid stimulating hormone.
If the TSH is high then you are considered to be hypothyroid and your doctor may start you on thyroid medication.
If the TSH is normal, then you are considered to be ‘euthyroid‘ and you don’t need thyroid medication.
So, where’s the problem?
The problem is that TSH is a pituitary marker and not necessarily an accurate measurement of thyroid status in your body.
There are times when it is considered normal for your TSH to be high or outside of the normal reference range (1).
In addition, the TSH test only gives you information about what is happening RIGHT NOW.
It doesn’t give you any information about your future thyroid function (2).
Most of the time it is an accurate measure of thyroid function, but there are times when individuals are placed on thyroid medication inappropriately (3) or times when they may only need thyroid medication short-term.
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Can you Stop Taking it?
Knowing this information, why isn’t it common to hear stories about people getting off of their medication?
The reason has to do with how thyroid medication impacts your brain and your thyroid gland.
As you take thyroid medication it causes a change in your pituitary and hypothalamus which alters how much thyroid hormone your body can produce naturally.
This makes it difficult (almost impossible) to see how much thyroid your body could produce on its own if you weren’t taking thyroid medication.
In addition, most doctors are conditioned to believe that once you start taking thyroid medication you will simply be on it for life.
This means that stopping thyroid medication in certain patients isn’t even on their radar.
So if you fall into one of the categories that I’ve listed below, it’s not likely that your doctor may start a conversation about reducing or eliminating your dose.
This leaves it up to you to start that conversion! But only if it’s appropriate.
3 Groups of Thyroid Patients
There are roughly 3 major groups of people to consider before you stop taking your thyroid medication.
Where you fit into these 3 groups will determine how likely you are to be able to stop.
Let’s dive into these 3 groups so you can help determine where YOU fit in.
#1. Those who Need Thyroid Medication
It’s worth talking about these people first because if you fall into this group then you don’t really have an option.
The truth is that some people will be required to take thyroid medication for the rest of their lives (4).
Not every single person will fit into this category, but it is certainly true that many of you probably do.
Why is thyroid medication sometimes required?
Because your body REQUIRES thyroid hormone to survive.
In fact, zero thyroid hormone in your body is not compatible with life and it ultimately leads to coma and death (5).
People who must take thyroid medication for life include the following:
- Those who don’t have a thyroid (either because it’s been removed or because they were born without it)
- Those who have had their thyroid 100% destroyed with radioactive iodine ablation therapy (sometimes RAI does not destroy the entire thyroid gland so you may not have to take it in all cases)
- Those people who have end-stage Hashimoto’s thyroiditis which has resulted in complete thyroid atrophy (ultimately, untreated Hashimoto’s will end up here over the course of decades)
- Those who don’t have a pituitary either because it’s been destroyed or damaged from trauma (these people can’t produce TSH)
If you fit into any of these categories then it is very unlikely that you will not be able to wean yourself off of your thyroid medication.
But not everyone is in a position where they HAVE to take it, there are still some groups of people who can potentially either get off of their medication or reduce their dose.
#2. Those who were placed on Thyroid Medication Inappropriately
Believe it or not, there are some people who have been placed on thyroid medication incorrectly.
Most people like to think that they have the best doctor around, but trust me when I say that not everyone can have the best doctor!
Doctors tend to make mistakes from time to time, and it’s certainly possible that you were incorrectly placed on your thyroid medication at some point in your life.
I’ve personally seen a great many patients who were placed on thyroid medication 20-30 years ago for one reason or another and they have just stayed on their medication since that time.
And each subsequent doctor that they go to looks at their medication and just assumes that they need to be on it.
There is a percentage of thyroid patients who take thyroid medication who fit into this category.
But how does this happen?
There are several known conditions that can cause a temporary increase in the TSH such that it may mimic the lab results seen in hypothyroidism.
But just because you have a high TSH on a one-time test doesn’t guarantee that you have hypothyroidism.
There is also the possibility that the test that you used was inaccurate as well.
It’s estimated that up to 5% of all lab tests are not accurate which leaves a fairly high degree of error and difficulty with interpretation (6).
If you were someone who was placed on thyroid medication because you had one isolated high TSH at some point in your life and you weren’t experiencing any of the symptoms of hypothyroidism then you may have been subjected to one of these issues.
If so, there is a decent chance that you probably don’t need to be on thyroid medication long-term.
People who fit into this category also find that they felt no difference on or off of their thyroid medication.
#3. Those who only need Thyroid Medication Temporarily
Lastly, there are a group of patients who need thyroid medication but only temporarily.
Several conditions, including thyroiditis, some cases of Hashimoto’s, hypothyroidism from obesity, hypothyroidism from iodine deficiency and other nutrient deficiencies, and so on, may be reversible causes of hypothyroidism.
Take for instance Hashimoto’s thyroiditis:
It is true that people with this condition may go on to develop fully-fledged hypothyroidism, but a small percentage of patients with this disease experience spontaneous and complete remission (7) (even without therapies!).
So, it may be that you were placed on thyroid medication because it was necessary at some point, but it doesn’t mean that you have to stay on it indefinitely.
Other conditions which may require the temporary use of thyroid medication include:
- Some cases of Hashimoto’s thyroiditis
- Hypothyroidism from dieting or obesity
- Hypothyroidism from some causes of thyroid inflammation and thyroiditis
- Postpartum thyroiditis (8)
- Hypothyroidism from nutrient deficiencies such as iodine deficiency
- Hypothyroidism caused by extreme but temporary stress
These are just a few of the causes of temporary hypothyroidism and there are probably many others.
If you aren’t sure why you were placed on thyroid medication in the first place then you should go to your doctor and try to figure out when and why you were.
From there you can determine if your issues are potentially reversible or require the use of thyroid medication long-term.
Even if you don’t find yourself in a position where you can get off of your thyroid medication completely, you might find that you can reduce your dose somewhat.
Take for instance the case of obesity:
I’ve seen many patients who require much less thyroid hormone once they start losing weight.
And if you are able to lose 25-50 pounds on your own then there is a very high chance that whatever thyroid medication you required at your heavier weight will not be required in the future.
The key here, however, is to address the potential cause of your thyroid issues.
What to do if you Want to Try and Stop Taking your Medication
First things first, you don’t want to do this on your own!
Believe it or not, it can actually be dangerous to stop taking your thyroid medication abruptly and I’ve written about why this is the case in previous articles.
I’ve been accused of being a shill for pharmaceutical companies for this recommendation but I still stand by it.
The truth is that it can be dangerous for some individuals to suddenly stop taking their thyroid medication, especially if they just don’t understand why they were started on it to begin with.
I’ve seen some people who don’t have a thyroid (because it was removed) who want to stop taking their medication.
This simply cannot happen.
Because thyroid hormone is required to sustain life, you MUST take thyroid medication if you don’t have a thyroid.
And the fact that some people don’t understand this is a failure of the medical system.
But, what if you are among those people who can potentially stop taking their medication? What do you do?
The best thing you can do is go to seek help from your current physician and ask if they are willing to help you get off of your medication.
Make sure that they know that you are aware of the risks (read about them here) and that you understand you may need to be placed back on it.
If they are on board with the idea then you can proceed in a very slow and cautious manner.
You should then attempt to slowly decrease your thyroid dose by 25mcg every week (if you are using Synthroid or levothyroxine) until you are completely off of your medication.
From there you will need to give your body at least 2 months to adjust to life without thyroid medication because it will take at least that long for your HPT (hypothalamic-pituitary-thyroid (9)) system to ‘reset’.
By slowly reducing your dose, you are allowing your thyroid to slowly start to kick in naturally which allows it to start to produce more thyroid hormone on its own.
If your thyroid is capable of producing thyroid hormone then you will probably notice a temporary worsening of your symptoms which should resolve over the next 2-3 months.
If you don’t ever start to feel better and your thyroid labs start to get worse, then you may be someone who needs to be on thyroid medication long-term.
What to Expect if you Stop Taking Your Medication
What should you expect if you stop taking your thyroid medication?
The first thing you should realize is that you are most likely going to feel worse for a short period of time even if your body doesn’t need thyroid medication.
The reason for this is simple:
Once you start taking thyroid medication (of any dose) it causes a negative feedback loop in your brain which REDUCES the amount of thyroid hormone that your thyroid gland produces naturally.
This is a natural and healthy mechanism that is put in place by your body to prevent too much thyroid hormone from being produced.
But the problem is your body doesn’t necessarily know the difference between thyroid medication that you take by mouth or thyroid hormone that your thyroid gland produces naturally.
So once it sees any thyroid hormone it alters the signals that it sends to your thyroid gland by lowering the TSH.
The more thyroid medication you take by mouth the lower your TSH will get.
So, as you stop taking your thyroid medication, it’s only natural that this TSH will start to increase.
But you have to be aware of one major important point.
Once your TSH has been artificially lowered with thyroid medications, it takes time for your brain and pituitary system to get back to full strength.
In fact, it can take several weeks to months for it to get back to the normal state you were in prior to taking thyroid medication.
Because of this, there will be a short period of time where your body isn’t producing enough thyroid hormone on its own (because it can’t) and where you are not taking enough thyroid medication by mouth to supplement this difference.
During this transition period, it’s normal, therefore, for you to feel bad! Because you don’t have sufficient thyroid hormone in your body.
This by itself isn’t a reason to think that you have to be on thyroid medication, however.
But, if your body doesn’t get back to normal and if you aren’t feeling well after 2-3 months, then you may be someone who has permanent thyroid damage and will be required to take thyroid medication indefinitely.
Conclusion
Is it possible to stop taking your thyroid medication? The answer is yes, but it’s not true for every single thyroid patient.
Is it possible that you may require long-term thyroid medication treatment? The answer is also yes, but it depends on why you started taking thyroid medication, to begin with.
Before you decide to try and wean yourself off of your thyroid medication make sure that you find a physician who is willing to work with you.
Also, make sure that you know exactly why you were taking your medication in the first place!
It’s certainly possible (and I’ve seen it many times) that patients were placed on thyroid medication decades ago for whatever reason and now they may not need to continue it.
Just be aware, though, that getting off of your medication is a process that may require several months to do it safely.
Now I want to hear from you:
Have you been able to stop taking your thyroid medication?
Do you know why you were taking it in the first place?
What thyroid condition do you have that necessitates medication?
If you’ve stopped your medication and you feel poorly, please also share your story below!
I have been using medical thyroxin for about 20 years. I wanted to start on natural thyroxin from bovine, and started on that. It did not go so well. So I went to an endocrinologist who checked my thyroid and took a lot of blood tests. I thought I had Hashimoto, but the tests showed no antibodies and my thyroid was normal. He said I could stop using medication and that the body will produce thyroxine itself. After two week without medicine my t3 and t4 was below reference border and the tsh was a little higher, but still inside the reference. But I feel bad. My bowel is not working so well, I feel it’s hard to breathe and I am anxious. How low will my metabolism go before the thyroid starts to work? Then I read your article and figured it is more wise to decrease the medicine slowly. I now went back on 2/3 dose and will go on lowering it. And take blood tests every second week. Is this a good plan?
Hi May-Lisbeth,
It’s a reasonable plan but testing your labs every 2 weeks is not really helpful. I would re-read the last 2 sections of this article for more information on how to proceed with titrating down your dose.
September 2018 dr. Told me I have severe Hashimoto. That’s when I start taking meds.
Do you think I can stop taking them?
My dr. Believes that thyroid med should be taken for the rest of your life, but I don’t want to be taking meds the rest of my life!
I was first told I had Hashimoto 10 yrs. ago. I took Armour Thyroid for several years. I started to see a new doctor and she kept me on the Armour until my blood work showed it wasn’t working and put me on Levoth. I didn’t do well on it and went back on Armour but now that I’m on Medicare they wouldn’t pay for the Armour. So I had to go back on Levothyroxine but ended up in the ER with a rapid heart rate and high blood pressure and dizziness. Last year a dear friend of mine died suddenly and it hit me so hard, I couldn’t stop crying. That night I took a Homeopathic remedy for grief and the next morning I was feeling great and couldn’t cry if I wanted to. It also seemed to heal my Thyroid. I had heart palpitations and my doctor said to stop taking my meds. So now a year later I know I need something. I see my Cardiologist next week about the palpations I’m having off an on. I’m praying I don’t need to be on Thyroid meds again.
Hi Diane,
Heart palpitations can be caused by both too much thyroid hormone and by not enough and in some cases, it’s difficult to determine which is which. It may take some trial and error to figure it out, but it’s either because you need to be on meds or because your dose was too high.
How does one determine if they would be considered as having severe Hashimoto’s? I have Hashi’s and TPO antibodies. I have been on 50mcg of Synthroid for over 7 years and it has helped me feel better and less tired and anxious. My ultrasounds do show damage to my thyroid (shrunken and holey like swiss cheese). I think I had undiagnosed Hashi’s for years and also low and then high iodine intakes – double whammy!
I tried going off meds (wrong – too fast) and got progressively more and more tired and felt physically and mentally worse but I wonder how one could tell if they are ‘past the point’ of ever getting off thyroid meds by the ultrasound results alone (or is there any other indicator that you would say..don’t even bother trying to go off meds other than the route you mentioned in the article)?
Thanks
Hi Jaz,
By the time you have visible changes to your thyroid via ultrasound that is usually an indication that there is some element of permanent damage which means you will probably require medication from that point forward. You may be able to salvage some thyroid function, but I suspect that some amount of medication will be necessary to function optimally. It’s far better to try and treat the issue when your thyroid is enlarged, inflamed but still functioning as opposed to atrophied.
I tried to go off my thyroid medication on my own. there are two diff blood tests. one said my level was normal but the other test said it was extremely high… then I realized my teeth started to rot because the right chemicals were not getting to every part of my body even though I slept fine and lived fine… that told me (after 4 root canals) that something was wrong… I went back on it and no more root canals.. everything is back to normal.. so ask your doctor about the two different blood tests and what the results are 6 weeks after you go off. then you’ll know…
I started taking Levothyroxine in 1991 due to symptoms of hypothyroidism. I was under extreme stress at the time and smoked. I was 40 years old.
I was tested by an endocrinologist. Lab tests revealed I had Hashimoto’s thyroiditis. I was told I needed to take thyroid medication for the rest of my life.
My mother was started on thyroid medication at 17 years old and other women in my family also have autoimmune conditions, including Hashimoto’s.
I started taking HRT in 1996 at age 45 due to severe pre-menopausal symptoms. Horrible hot flashes and insomnia.
In 1998-1999, still taking Levothyroxine along with HRT, all my original symptoms of hypothroidism returned. My TSH level was at the very high end of the normal range. I was told by the endocrinologist that no medication increase was warranted. This continued for several more years of me feeling horrible.
In 2002 I found a doctor who prescribed Armour thyroid since I read it might work better for me. It sure did. With a couple weeks I was feeling much better. I also quit smoking in 2001.
Around 2003-2004 I switched to a different type of HRT. I now realize this was a big mistake. Hormone pellets were inserted into by buttock every few months.
Gradually I required higher doses of Armour. I started at 120 mg and topped out at 180 mg. I recently learned taking HRT blocks the thyroid receptors so more thyroid medication is needed. I finally stopped taking HRT in 2012 and my Armour dose was gradually lowered back to 120 mg according to my lab results.
In July 2014 I was diagnosed with stage 1 breast cancer. My oncologist told me it was probably due to my long term use of HRT and the weight gain that started after stopping HRT. Even though I was stage 1 the cancer was a very aggressive form. Estrogen driven and HER+.
I was in treatment for a year. Surgery (lumpectomy), chemo, radiation, and targeted therapy with Herceptin. I could not tolerate the aromatase inhibitors they wanted me to take for ten years after treatment. I tried taking three different medications over an 8-9 month period. I had the most horrible side effects, dementia and extreme joint pain! I had trouble moving around. When I stopped taking the medication the side effects gradually went away.
Since the fall of 2015 I have been healing from the breast cancer treatments. I started by cleaning up my diet, taking supplements, and making better lifestyle choices.
I recently asked for comphrensive thyroid panel testing. I no longer have Hashimoto’s. Now almost five years later I feel pretty good. I would love to get off thyroid medication. My current dose is down to 75mg of Armour.
I was told many times it was not possible to stop taking medication since my thyroid gland was shriveled up and gone. No imaging test was ever done to verify it though so I do not know how they say this is true?
About 6 months ago I started taking Metformin for pre-diabetes. So far it has not lowered my HA1c. The doctor keeps increasing the dose. I am now 68 years old so it has been 28 years since my original diagnosis of Hashimoto’s.
This has been a very long story I know but I would love to hear your comments Dr. Child’s!
Hi Joyce,
It would be a good idea to check the status of your thyroid gland with a thyroid ultrasound. Thyroid imaging with ultrasound will give you some information but it’s not 100% accurate in testing for thyroid function (obviously), so you will probably need further tests beyond that.
Where would you consider someone who has half of a thyroid? I had half removed 4 years ago due to a long standing undx intrathyroidal parathyroid adenoma of 15+ years. I had a rough couple of years post op rebalancing both my thyroid and minerals (low calcium, magnesium and vit D). I was never out of range in anything though my calcium, PTH and FT4 were bottom of range. Supplements (calcium, d, k2, mag, zinc, b vitamins, etc) and thyroid medicine went a long way. I have a good endo who also practices functional medicine. I take a combo of levo and NDT to support pregnancies and nursing over the last few years. But I have always been suspicious that with the proper nutritional balancing the other half of my thyroid could be up to the task and maybe one day go off all meds. I’m hoping to start exploring that once I’m past the childbirth and nursing stage of life.
Hi Erin,
It’s possible for some people with a half a thyroid to never use thyroid medication as thyroid tissue has been shown to hypertrophy and take over for some non-functioning gland. It’s not always true, however, and some people without a thyroid certainly benefit from the use of added medication.
Hi there,
Can I try to lower my thyroid med even if I have thyroid nodules? or can I get rid of the med if I have nodules? Does that mean my thyroid got damaged and can’t be fixed anymore?
Dr doesn’t help in here they say just keep taking this for a long time.
Thanks for this article.
Sue
Hi Sue,
Typically, thyroid nodules do not have any impact on your thyroid gland function so it would probably depend on how many nodules you have, how big they are, and if they are functioning vs non-functioning.
Hi Dr. Childs,
I asked my doctor if I could try going of Armour, and she said, “Sure, go ahead!” I weaned off per your recommendations above. I have been off all thyroid for about three weeks and have been feeling pretty good. Last week, my doctor tested my TSH (I tried to get her to run a full panel, but she said no). It went from .01 in March to 58.88. She said I would need to get back on medication immediately. I would love to hear your opinion. Thanks,
Kala.
I have a goiter found in high school and back then my doctor told me to eat iodized salt.. but a year later my goiter enlarge and I went to Endocrinologist and she put me on Synthroid and I have been taking it for 38 years… I was over 100MCG and now I take 75MCG just from take Whole-Food Multivitamin plus (Dr. Mercola). Dr. do my lab test and told me I will be on Synthroid for the rest of my life without any other test! Help.
Hi Jeanne,
This article discusses the potential categories that patients fall into and how these categories impact their ability to get off of thyroid medication. You will need to determine where you fit in and then you can determine if you are able to stop thyroid medication. If you are able to treat your goiter and to reduce the size of your thyroid gland then you might be able to wean off of your medication.
Hello Dr. Childs,
About March 2015, I went to see my OBGYN for a yearly well woman’s exam. We started talking about my energy level. At the time, I was switching between day and night shift so I said I was pretty tired most of the time. She checked my TSH and T4. My T4 was within normal limits, but my TSH was elevated at 5.3. Being tired was the only “symptom” I had. She referred me to an endocrinologist. She ran a TSH and T4 again. T4 was normal but TSH was about 5.5. She told me I needed to be put on Synthroid. She started me off with 50 mcg. Two weeks later is when my nightmare started. I started to loose hair, having constipation, feeling more tired then before, acne, weakness. I went back to her after a month bc she wanted to check my labs again. I told her all the symptoms I was having. She said “it will get better once your TSH is back to normal.” I believed her but something in me kept telling me something was wrong. I went to her for a year. My synthroid dose went up to 100 mcg and my TSH was 1.2, but I was still having symptoms. I decided to leave and see a naturopathic doctor. His NP ended up seeing me. I told them the whole story. They decided to change me to a combined T3/T4 medication. I still continued to have constipation, acne, my hair was thinner even after all my thyroid labs were normal (TSH , free T3, free T4, TPO TBG). I got pregnant in 2017, and my symptoms went again. But now 2 years after having my baby, I’m starting to have the symptoms again. I have already had to increase my dose twice. I recently got my labs checked and results are pending. What really has me sad is that I have noticed a lot of hair thinking. I end up growing baby hair, but even that falls out. My hair is just not the same as before I started taking thyroid medication. My hair thickness and texture has changed tremendously! I am wanting to be weaned off and hopefully get back to how I was. Do you think I can be weaned off based on my story? What should I do?
Hi Flor,
It’s possible, yes, but not guaranteed. The only way to know for sure is to try. This, of course, assumes that you are also doing everything within your power to optimizing your health such as eating an healthy diet, exercising, being at a normal weight, etc.
You sound like you have rt3 issues. You need ft4, ft3 and rt3 run by your doc. You’ll likely need more t3 meds
Diagnosed hypo post partum 27 yrs ago. Was also on severely restricted no sodium diet for Inner ear disorder. After reading this information I’m wondering if I would be a good candidate for stopping my NDT. It could have been lack of iodine and post partum levels that caused my thyroid levels to be high. Currently my frees are not optimum and my tsh runs very low but myvRT3 is 15. I’ve never taken more than 1 and 1/4 grain. Perhaps medication wasn’t right for me to begin with?
Hi Deb,
It’s always possible but hard to say without a comprehensive history.
I went to the doctor for low vitamin d because it was an issue I have had for three years. doctors tested the thyroid and it was fine. The new doctor, I moved, tested the thyroid because I complained of being tired all the time, which is normal for low vitamin d. My thyroid was slightly elevated and the doctor put me on the levothyroxine. I was not happy. Months later and I feel worse. My hands are always cold and I gain weight so easily along with thinning hair, I am tired all the time. My thyroid test came back good and is now 1.14. I swear this pill is my issue and want to stop it immediately but I know that is unsafe so I will try this and get tested in 3 months to see what the test says. I am pretty sure I will be fine.
I know that those are symptoms of the medication not working but how does one go from no symptoms to many when taking a pill that is supposed to help. We will see.
Hi Brandie,
It’s possible for some people to wean themselves off of thyroid medication, but you will invariably encounter symptoms of hypothyroidism in the process (worsening fatigue, weight gain, etc.).
Sounds like a rt3 issue. You need ft3, ft4 and rt3 tested.
I was diagnosed with large b-cell lymphoma in Sept 2019. Before chemo could start my body crashed. I went to ER and put straight into ICU with Sodium at 104. Took a week to get back within normal range and chemo was started the next day. During that period they also put me on levothyroxin. I thought it was related to the chemo. Recently found out it was not, they put me on because they decided I was also low thyroid based on blood work done for my other conditions. Prior to start of this I had zero symptoms of low thyroid and considered myself very healthy and active (63 yrs, 5’7″, was 126 lbs), didn’t have a doctor, did not take any medications – prescription or OTC (63 yrs, 5’7″, was 126 lbs), eat healthy home-cooked meals, feeling great. Told oncologist nurse today I want to get off and she said I could just stop taking it (50 mcg/day). I wondered about that advice and found this article (among others that said Do NOT do that). I think I fall into one of your exception groups – What do you think? Can I cut the pills in half to get 25 mcg? I think I will take the 50 mcg tonight and talk to the doctor again tomorrow! (In hospital now getting 24hr chemo for 5 days).
I’m currently titrating off my thyroid medication because I’ve consistently tested negative for antibodies and my doctor thinks that my elevated TSH (3.75) might have been transient. Since I’m pulling myself out of a suppressed TSH situation, I notice that my thyroid is throbbing a lot, almost like it is “waking up.” Is that normal? Otherwise I feel okay.
About five years ago I saw a functional MD who tested my thyroid levels and claimed I had low T3, even though it was in the reference range, on the lower end. I don’t have Hashimoto’s and I don’t think there has ever been anything wrong with my thyroid gland itself. I think I have had some HPA axis dysregulation and I have other digestive/autoimmune issues. I recently went on a strict diet for autoimmune disorders and after a couple of months I started feeling very hot all the time, hungry, anxious, with heart palpitations. At my age (54) women tend to dismiss everything as being related to menopause, but finally I realized that my thyroid medication was too high. I started tapering off it and feel better. Everyone screams about working with doctors and getting labs, but I think the lab tests are misleading and inaccurate. I go more by how I feel. I feel better at a lower dose. I think whatever was causing the poor T4 to T3 conversion has been corrected by an anti-inflammatory diet. Maybe at some point I will be off the meds entirely. People should realize that problems with thyroid hormones are not always related to the function of the thyroid gland itself.
Hi Gigi,
I’m glad you understand some of these nuances and I think you are correct on several points. Lab tests are highly inaccurate and often misleading and there are many patients who suffer from thyroid-esque symptoms which are secondary and not primary. This isn’t true for everyone, but it is for many people!
Can extreme temporary stress and poor diet cause high TSH?
Hi Brandi,
Definitely!
Hi Dr.Child,
Can I replace my levothyroxine to a thyroid supplements if my TSH lab tests shows improvements? Or, when do you think I can stop my med and just continue taking my supplements instead?
Hi Lori,
You might be able to given the right circumstances.
I had what I believe to be postpartum hypothyroidism ( it happened post breastfeeding) , but have now been on .025 of levothyroxine for 6.5 years, because no one told me to stop. Currently all I experience is side effects of the levothyroxine and not hypothyroid at all. I think its time, but am not getting support from my doctor – he is just convinced once you start you never stop. Sigh. How do you wean off of such a small dose – cut in half then quarters? I am looking for specifics if possible.
I would love to know what you did …. I’m on lev as well and after two yrs am having extreme issues… I want off.
I would get a second opinion. I was on level since I was 18. In 2020, almost a year after my last child was born, I cold turkey stopped taking all my meds (NOT ADVISED), but I was on low doses. I waited a fewinths to get everything out of my system and time to rebuild some, and started taking natural supplements BEFORE I went and had a new Dr run a full panel. She referred me to an endocrinologist because of another issue I have with my pituitary gland. The endo ran another full panel about six weeks later. Both my thyroid and my other pituitary gland issue were normal. Fast forward two years, my thyroid is now going the opposite direction (I was hypo now I’m hyper). My endocrinologist ran another full panel and did an ultrasound to see where I’m at. We’ll go from there.
I would definitely get a second opinion. Find an endocrinologist that will run a full panel. TSH is not enough, as this Dr says, there are so many outside influences for TSH. You need a full panel as a base line and go from there.
Hi Jessi,
I agree that getting a full thyroid lab panel is certainly helpful, but it’s usually pretty rare that an endocrinologist is willing to order all of the right tests: https://www.restartmed.com/endocrinologist-for-thyroid/
Hello Dr Childs
So happy to have found this site. I have been on Levothyroxine for many years due to hypothyroid. I was currently taking 50 mcg. Last year I started having what felt like an increase in my female hormones, breast tenderness, inflamed pelvic ovary area and hives on my body. I also had experienced some dizziness. I have had all necessary tests, ultrasounds and a full CT scan of pelvic and abdomen all is well, except free-fluid in cul-de-sac in pelvic area. (Probably from constant inflammation) As soon as I try to start taking the 50mcg symptoms return. Can this medication cause these symptoms? I have lowered to 25mcg and not experiencing so much of this but still not comfortable, trying to come off completely, any suggestions? I do not take any other medication other than krill supplement for my joints. Thank you any advise would be very helpful.
Hi Cheryl,
Your symptoms are probably more related to the thyroid status in your body which is related to the dose and not the medication itself.
I went to a functional Med dr a couple years ago and found out I have celiacs in addition to Hashimoto (I was going bc I knew I had Hashimoto, not the celiac). I was not on any medication (my Hashi was caused initially by postpartum thyroiditis that never went away). At that point all of my thyroid labs were in range but not optimal. My thyroglobulin was a 8 and my TPA was around 80. I was having hair shed, joint pain, cold intolerance. I tried gluten free for 1 year, the joint pain went away but not the hair fall or cold intolerance. I started armour, .15 gr taken initially 1x then later 2x a day. The hair fall and cold intolerance eventually subsided but I started getting this lump feeling in my throat I had never ever experienced before. I’ve taken the medicine for a year and that feeling comes and goes. After taking my labs, my TPO initially shot up to almost 200, but my thyroglobulin has been steadily dropping. It is currently at 3, and my TPOs are at 160. I would like to decrease the amount to 1x a day, because I really dislike the throat feeling and feel it has to be somehow related but ever time I ask I’ve been told armour should not cause that effect. I’m wondering if I should have given going gluten free more time before stating medicine or have you ever heard of armour causing a goiter feeling?
Hi, I wish I found your blog two months ago, but at least I have it now. I switched to a gluten free, mostly dairy free ketogenic diet a little over 2 months ago. I also became fed up with my doctor when I realized she was only testing my TSH level. I was placed on Levothyroxine about 15 years ago after my second pregnancy and about 80 pounds of weight gained. Over the years my dose just continues to increase. But with my new diet I feel so different – I talked my doctor into doing more tests, but didn’t test for Hashimoto. My doctor was unwilling to decrease my dose so I stopped my medicine completely. I still feel great but my thyroid is definitely enlarged. Do you have articles about that??
Hi Lana,
Articles about an enlarged thyroid? Yes, you can find one here: https://www.restartmed.com/enlarged-thyroid/
I am on 75mcg and was put on this for a slightly high thyroid. I don’t like the symptoms so I’d like to try weaning off. I want to understand that I should take 50mcg for a week, then 25mcg for the next week and then nothing after those 2 weeks?
Hi Kellie,
That will probably be okay but you should touch base with your doctor to make sure it’s safe to wean off.
Good evening Dr. Childs my daughter is on a T4 and separate T3. She is still having acne and weight gain. She is just 20. She has only been on thyroid meds for 1year and 3 months and has not improved. Is there doctor in Tampa Florida or Orlando Florida that you can refer us to, to help her consider getting off her thyroid meds. We are
Desperate
Hi Lora,
I don’t know anyone there but you can use this resource to help you find someone: https://www.restartmed.com/thyroid-doctor/
I had half of my thyroid removed 9 months ago for what ended up being an adenoma and not cancer. I had about 4 weeks of severe hormonal effects such as panic attacks, extreme sensitivity to heat, heart palpitations and insomnia post surgery. My bloodwork at the time was opposite of my symptoms and indicated hypothyroidism. I was prescribed synthroid but was told I didnt have to take it yet and could wait to see what happened post surgery. After 4 weeks my symptoms completed disappeared without medication. My TSH came down to a 4.4 from an 8.0 on its own and I felt great. Therefore I didn’t end up taking synthroid. I got pregnant 4 months ago and my TSH shot up to a 10 so I had to take 50 mcg of synthroid and the TSH has since been regulated to 2.5. I have been very tired all the time which very well could be pregnancy related but I want to be able to go off of synthroid or at least reduce the dosage following pregnancy, maybe to 25mcg if needed. Does it sound like a possible option for me? I am concerned the lethargy will stay and could be possibly related to the synthroid. I was not tired previously when my TSH was 4.4 prior to pregnancy. I am 36 years old, 100lbs. 5’1″.
Hi Dr. Childs,
I had absolutely no symptoms, however, my family doctor ordered TSH test during a medical and the test came back with a reading of 37.
He automatically put me on a prescription of Synthroid (50mg) and no further tests were performed. I asked to be referred to an endocrinologist. Upon meeting the specialist, he stated that the TSH test was all that was required and considering my high reading, that I have Hashimotos disease and will require Synthroid for life.
I asked if there were additional tests that needed to be performed and he insisted that TSH was suffice for this diagnosis. He also upped my dosage from 50mg to 75mg. After increasing my dosage, I felt my heart racing and had difficulty breathing. I had to check into the ER. The specialist told me it was all in my head. Additionally, I have been tired all the time and have no desire to do anything. I was not like this before starting this medication. I took the 75mg dose for 2 months then performed another TSH test, which came back at 11.
I went back again to see the doctor a few days ago following these results and asked once again if he had diagnosed me with Hashimotos and he said yes. I asked if there was a requirement to perform antithyroid antibody tests. This time he said, ‘we did those tests already didn’t we?’. I stated that we hadn’t (he looked through his files and went ‘oh’) and his suggestion was to increase my dosage to 100mg of synthroid, then perform TSH and antithyroid antibody tests in another 2 months time.
I am very doubtful about this entire diagnosis, as only one test was performed initially. No further work ups were performed and as this medication dosage has increased, my symptoms are worsening (I had no symptoms before the medication).
My question is what do I do? I feel a full blood workup and thyroid ultrasound should be required in this situation, however, I am in Canada and our health system is not private, so I can not order testing and am at the mercy of the physician who has been allocated to me. My current specialist does not listen to me and believes prescribing is the key.
I appreciate any input.
Thanks and regards,
Jason
Is the schedule the same for weaning off of Nature Throid?
Hi Robyn,
I wouldn’t call it a schedule but more of a general guideline and yes it would loosely apply.
I started Levothyroxine 2 months ago with 100 mcg however due to side effects, reduced to 50 and then 25mcg. I had TSH 19 which in 3 weeks by 100mcg overtreated to below 0.1 and hence doctor reduced dose.
I have hashimoto thyroids and they found anybodies during lab test. I have reduced 5kg since my medication. Do you think i should try stopping medication and see symptoms for few months ?
Hi Jitendra,
Unfortunately, I can’t give you that kind of medical advice over the comment section here.
Hi Dr. Childs,
I have been on 75 mg of Synthroid for several years but don’t believe I should be. My doctor believes the only test that’s necessary is TSH. When I insisted on T3, T4 and Free T3, his comment was, “I don’t use those”. I have been told my entire life that I have low hemoglobin but no one has investigated it. I’ve done tons of research and feel that this could be my whole problem. My last test showed MCV=80.0 and MCH=26.3. I have some issues that no doctor is able to explain and I feel that anemia might be the cause. I have been suffering from a burning, swollen tongue for years, no matter what I do, I can’t lose weight, I have restless legs, heart palpitations and my hands get so cold (in my house)I have to wear mittens to work on my computer. My doctors don’t care about my symptoms, so I am left to my own research. Years ago I had a problem with the skin inside my mouth. It would slough off of the inside lower lip and up the insides of my cheeks. I could never get an explanation from the countless doctors so after lots of research I decided to take kelp. Within two weeks the issue was resolved, never to return. At that time I was not on thyroid medication. I would like to try kelp again but was told it can be dangerous when on thyroid medication. What are your thoughts and is there a safe dosage I could try?
I am interested to see the reply from Dr. Childs ! My wife also has same problem !
-mukesh
Hi Dr. Childs,
I’ve been on levothyroxine since I was 13 and I recently saw this article. I was put on the thyroid medication as a young teenager due to mood swings and one lab test that said my levels were low. I’ve always been a little overweight and I am constantly trying to maintain it.
Right now I’m 19 and I’m working on trying to wean off my medicine and I wanted your advice on whether I should continue. I’ve been at 100mcg of thyroid medication and recently at my doctor’s I asked if I could start coming down so I was prescribed 75mcg. My levels have been extremely normal the last several years and i’ve been wanting to come off it for a while. It’s never impacted my physical function and my thyroid has never “died” as some doctors have told me.
What are some side effects of lowering doses?
Hi Dr. Child’s,
In 2008 I received radiation therapy for a tumor that sat below my thyroid gland. Due to location of the tumor my thyroid gland was exposed to that radiation. Went into remission months later and recovered great.
Fast forward to 2014 I had my first child. Two years later I was having symptoms of foggy brain, mood swings, irregular periods, and a couple others. So my ob at the time did a blood test and can’t back with results showing I was slightly off the scale for TSH levels. She put me on synthroid which I reacted terribly to so she switched me to Armour 30. My symptoms soon left and for about another year and half nothing changed. Then I had my second child in 2017 and things went downhill and I can’t seem to get back to feeling well. My new doctor upped my dose to 45 but I feel the same. I have made many changes in my diet, improvements, in hopes that maybe I was just deficient in something. I do know that caffeine triggers me to feel worse, cut that out. Anyway wondering if I actually need to be on medication anymore or if I was improperly diagnosed. When I see a doctor and bring this up they focus on the fact that I had radiation and say that I will need the medication for life.
I was taking Desiccated (30 mg) thyroid for 4 months because my T3, T4 levels were low (normal TSH ~2). For the last month my T3 and T4 became high and abnormal high. My TSH = 0.01. I think I should get off the Desiccated thyroid now. Is it save?
Or should I just decrease the doze?
Hello Dr. Childs,
My mother, 85, has been on Thyroid meds for at least 40 (50?) years. Possibly after a hysterectomy. None of her Dr’s suggested taking her off or even asked why she was on it. I never allow her to have salt due to her high blood pressure. Could not enough salt affect the thyroid?
Now she’s faced with adding another pill (blood thinner) because her pacer says she’s in AFib. I asked her doctor to take her off Thyroid-meds years ago. Since then I have learned that it can cause Afib. Is it possible to wean her off using your instructions to see if she can self-naturalize her thyroid then take another Afib test? I believe she was mis-diagnosed or possibly only needed the thyroid meds temporarily. What she needed 50 yrs ago may not be what she needed or needs now but of course the doctors never allowed her to go off of it. They only diagnosed from the lab reports. Should she have an Xray of her thyroid?
My background: I am a 52 y/o female, and three months ago I started a new job that, due to COVID19, I am rather stressed out about. I do not eat out, I do not east fast food, I have a very healthy diet, and cook solely with non-iodized kosher salt for the past 20 years. I am not on ANY medications.
3 months ago I started feeling an odd pressure on the front of my neck when nothing was touching my skin, which was not painful, but very annoying. I went to my doctor who took a thyroid function cascade and free T4 test. my TSH came in at 4.18 uIU/mL, and FT4 came in at 0.62 ng/dL.
Let me be clear: I have NO OTHER SYMPTOMS. No constipation, hair loss, dry skin, feeling cold, nada. Just some weird pressure on the front of my neck, and maybe some difficulty breathing, although I’m not sure this isn’t psychosomatic in nature.
I am extremely concerned about starting to take (doc says a very low dose of) Levothyroxine/Synthoid due to the long-term changes it creates in the pituitary.
Since what I’m reading here is that it can be difficult to STOP the medication… I’m thinking I should start to increase my iodine intake and see what happens before jumping into the prescription solution.
Does this sound like a reasonable action?
I have been on thyroid medication for about 12 years. It is continually being increased and I am now at 125 mcg. I have also been on HRT for about 20 years. In the last ten years I’ve developed a chronic case of kidney stones and have had three operations to remove them. The biggest stone was 18mm and only took about a year to grow to that. I have chronic pain in my left knee and have also been diagnosed with fibromyalgia. I can do a 2 hour walk before my feet swell up and are in pain, especially the heals.
It’s been about a month since I stopped taking HRT and am suffering from terrible hot flashes.
I wish to start the journey of stopping the syntroid – I realize there’s a possibility that I may have to go back on it . My endocrinologist & gp don’t wish to assist me do this in the safest way possible. I just want to start to feel better and strongly believe that all these toxins we put in our bodies contribute to our discomforts and illnesses. I wish to make every effort to heal through proper food and would love the support of my doctor.
On my own, I suggested to reduce the dosages on a monthly basis – it should take about 6 months in total. I assume this way my body can better adapt but don’t really know.
This morning I was lying in bed and could feel my heart beating like crazy. Turns out it was a 92 bpm and I was resting. Crazy!
Please provide some guidance than I can relay to my doctor’s who are holding out on helping me. Again, I wish to be syntroid free for at least 6 months before going back on it – an that only if it is absolutely necessary.
Hi, I’m 33 with 3 kids I was diagnosed with hypo right after I had my last baby, 3 years ago. I was a few months post partum. My hair was falling out horribly and I was beyond exhausted. They checked my thyroid levels and they were 4.51 so they said yes your hypo gave me synthroid. When I first took the medicine I began to feel great my hair started coming back, I felt good. Fast forward about a year I started feeling horrible again but my numbers were good, they added cytomel. I started feeling a tad better I thought but nah not really so I go back and they just keep telling me take your meds there’s nothing else you can do. My numbers are good at 1.62 but I feel awful, tired exhausted, fatigue constantly, no energy, I use to could walk two-3 miles a day but now it feels like my joints are shot and my muscles won’t work very good. I’m thinking I was prematurely put on medicine and my numbers and symptoms were from having a baby a couple months prior to the test. I decided I’m going to try weaning off my medicine, I can’t live like this forever I feel like I have an e edgy level of an 80 year old and I just can’t do that anymore. I’m hoping the weaning won’t be to hard since I’ve only been on meds 3 years
I was diagnosed with Hashimoto’s four years ago. All of my labs were normal except my thyroglobulin was really high. I was tired of that time but I was also going through a lot of mental stress. I’ve been on medication since and I’m just tired of it. I have side effects with most of them even the tirosint. I really want to wean myself off with the doctor’s help but I’m so scared of feeling like total crap again.
My question is.. anything that somebody can do during that time to help heal their bodies? I figured you need to start doing something else to help the thyroid while you’re weaning off medications.
I have Hashimotos and have been on amour thyroid for about 15 years or so, post menopause. It helped me enormously in every single way.
I removed gluten from my diet 5 years ago, which has improved my general health.
I quit drinking alcohol in 2016, as I definitely drank too much wine back then. Now I occasionally have small amounts in social settings, but am aware it adversely affects my thyroid as well as liver etc…I plan to auit entirely again in 2021.
Because of covid, I really got religious about taking all my supplements, every night before bed. For awhile I took really large doses of Vit C, l-proline and l-lysine, but have settled on around 1600 iu’s of C. I take berberine and pqq. I take ubiquinol, krill oil, selenium and zinc. I add liquid magnesium to my water that I swallow the supplements with.
I know it is alot, but guess what, after years of taking two 90 mg doses of NP thyroid, I began feeling it was too much. I asked my doc to reduce it to 2 60’s twice a day. I feel great. Yesterday I forgot to take the second dose. I woke up this morning feeling very good.
For now I will continue with two pills, but gradually see, over time, if I can do with just one. Then, if that goes well, I might go down to 2 30’s a day, and so on…over the course of another year or so.
I believe in going with how I feel, how I function, and my heart rate. My previous (female)doctor agreed with this. Cutting out gluten, getting a divorce, retiring to a peaceful life, quitting alcohol and adding boosting supplements have all helped me to reduce the thyroid medication. I believe the tests to be nonsense, required by insurance companies…and as back up in case of malpractice suits.
Most docs are woefully ignorant about thyroid issues. I take what they say with a grain of salt, and keep learning for myself.
Hello Doctor, I was diagnosed with an under active thyroid 35+ years ago due to fatigue. I was prescribed 75 mcg- of Levoxyl. I have a thyroid gland.
I moved to Mexico 7 years ago and switched to Eutirox, the only thyroid med available here. Within months I began having rashes. I’ve been treated by dermatologists, immunologist and general practitioners, without resolution.
These flare ups have continued, some quite serious with total body involvement. I’m very photosensitive.
Two months ago I knew I was about to have another severe episode because it came on so quickly and was spreading rapidly.
I did some research and came upon articles about drug induced cutaneous lupus. I’m certain this is the problem!
I attempted to get help from several doctors. The response has been “you cannot stop taking this med. I won’t treat you or be responsible”. I had no alternative than to quit the med cold turkey which I did 45 days ago.
Within 2 days the rash stabilized and was no longer itchy. Now it is nearly completely healed
I can acquire lab tests independently, without a doctor’s order and plan on going to the lab tomorrow.
Any advice or comments you can share will be very appreciated.
Regards, Ingrid
At 22 I was diagnosed with depression I was put on antidepressants and became manic so my Dr. put me on a antidepressant for bipolar at the same time he tested my thyroid TSH T3 and T4 and an antibody test. I went for a follow up and was told I had Hashimotos and he took me off the antidepressants and prescribed me 50mcg of levothyroxine. I’m now 36 taking 88mcg of levothyroxine. I stopped taking it abruptly when I was 28 due to loss of health insurance. I did not feel worse but I have never felt good even on the medication. 2 years later I went to a fertility clinic and they tested my thyroid my tsh was 13 and the clinic was wondering how I wasn’t feeling worse. They put me back on it and I have been taking it since. I want to try to lose weight to see if I can reverse my hashimotos.
Hello again Doctor, just to update I received the lab results and everything is great! Had a complete thyroid screening including thyroid antibodies, no problem. I also checked immuglobin e and g. When I was at the height of a severe reaction the ig-e was 1495, now only a bit high at 201.2 (range should be under 100 UI/ml) thank you for all the info you’ve provided. It certainly helped me! Sincerely, Ingrid
I found this article via a search for “weaning off thyroid meds”. I accidentally reduced my dose about 6 weeks ago. I had a bottle of a lower dose sitting behind the bottle of my most recent dose. It was only 6 months old, so I don’t think there’s anything wrong with the meds. I actually had an improvement in my symptoms after about 3 weeks (about the time I realized I’d been using the wrong bottle). My sleep got better, my periods got better, my mood was a little more steady, my heart stopped doing that weird pounding thing it had been doing. So I was thinking it was a happy accident, but this last few days I’ve been very tired. I also have a head cold, so I’m not sure that the tiredness isn’t just that.
I was just wondering, since I’m on this lower dose for maybe 6 weeks now, if it might be a good time to get checked. What would my labs look like if I am a good candidate for weaning off further, or even leaving it at this lower dose. Should I still expect a higher tsh as my body adjusts? I think this post indicates that I should expect to feel kind of bad for several weeks?
I’ll keep researching, just in case you don’t watch this post any more. Thanks in advance, if you have any suggestions for me!
My son appears to have Central Hypothyroidism with TSH 2.79 (0.4-4.2), fT4 11.6 (12-22) and fT3 3.8 (3.1-6.8) and has had it for at least 3.5y from side effects of a prescription drug.
We have started a natural treatment plan but may have to consider replacement hormone eg Armour or levo, after that.
Would you agree that would be a case for weaning off it once levels increase and stabilise?
Dr. Childs,
My son is 36 years old and has Down Syndrome. He was diagnosed with hypothyroidism and placed on Levothyroxin (##mcg daily) about 2 years ago. He has had normal thyroid hormone levels since he began taking medication, but I am wondering if he can be weaned off it. We don’t want him to take Levothyroxin indefinitely unless absolutely necessary due to its negative effect on the body’s natural hormone production ability. I know that some people are able to wean themselves off Levothyroxin. I just haven’t found any research on the matter as it relates specifically to individuals with Down Syndrome. Any information you can provide would be greatly appreciated. Thank you!
Dr. Child’s, I forgot to note my son’s current dosage of Levothyroxin in my earlier post. It is 25mcg daily.
Tim
Hello, I was put on Levothyroxine 2 years ago due to elevated TSH with no symptoms to note at the time. Later diagnosed with Lyme disease and Bartonella coinfection. While on thyroid medicine they have never been able to get my levels normals but T3 and T4 WNL. Now that I have been on treatment for Lyme disease my thyroid levels are finally normal and seem to be the only thing to change my TSH. Can I slowly wean off since I believe no actual thyroid problem to begin with? Tests did show initally that antibodies were positive and other autoimmune issues ruled out.
Hi Havilah,
You might be able to, but I wouldn’t do it without physician supervision.
Hi Dr Childs,
My TSH had been getting elevated (3.5/4.5)in the past few years.But my T3 and T4 were normal. I had no symptoms, except I had a sensation of something stuck on my throat… My dr prescribed me Synthroid but I avoided it for a few months and went to see a Naturopathic dr. He gave me few vitamins and Iodine. We ran the tests and my TSH was 10.5!! I got so scared I started taking the Sinthroid immediatelly. After a month I noticed I was gaining weight… I am so disapointed and don’t know what to do…. My dr says we need to elevate the dose but I dont want it….
Hi Cecilia,
I would consider taking the all natural approach if you don’t like to use medications: https://www.restartmed.com/natural-thyroid-remedies/
Hi Cecelia, according to what I’m reading about iodine, if you’re thyroid hadn’t been working optimally because of iodine deficiencies, and you then correct those deficiencies, your TSH will rise. But that doesn’t mean there’s a problem. At that point, you also need to check the T3 and T4, and if they’re in normal range, then it’s fine. Your naturopath should’ve known that, and it doesn’t sound like he’s someone who should be prescribing iodine supplementation. The TSH would come down naturally once your thyroid is working optimally again.
Hi,
I believe I was placed on thyroid medication inappropriately.
My thyroid panels have always tested within normal ranges my entire life. A cardiologist placed me on Lithothyronine to “optimize” my ratios and because he said that bloodwork does not indicate cellular uptake of thyroid hormones. The Lithothyronine was included in a set of supplements and probiotics to begin taking to improve my already very good health. As a 53 yr old, extremely athletic woman, I felt this course would help me continue to preform at a high level.
What was not explained was that the medication would cause my thyroid to stop producing. I thought the Lithothyronine was to SUPPLEMENT my existing hormone levels! I want off!!
I currently have not completed my step-up dosing and am taking 5mcg twice/day. Can I begin to step down from this dose as you recommend under doctor supervision?
Under active thyroid which is also enlarged. Using 1.5mg Eltroxin for the past 15 years. Can I stop it after the negative things that I have read?
Hi Ronel,
It may be possible but you wouldn’t want to make any changes without consulting your physician.
I’m 47 yo and it was determined in 2015 after 5 drs, that I had Antibody in the triple digits. I was put on a low dose levo. The weight gain stopped, but can’t lose weight and do not feel better.. it seems they just kept putting me on a new med for every ailment..My doctor just released me from all care when I suggested none of these medications were helping me. I have a drawer full of meds and supplements! I was taking meds by the handful 3x a day and the symptoms did not end. So I am two weeks into detoxing off all meds. It’s rough, but if the meds were not helping…now I’m detoxing without a physician. Today I feel great, but….I’m looking for another doctor who will listen. I’ve been on your supplements two months, but little help thus far. Praying for a miracle. I just want to NOT continue being a prisoner in my own body. Is that too much to ask?
Hi Robin,
That is certainly not too much to ask for.
After 3 mos. on Levothyroxine 50 milligrams my TSH went from 11.8 to 1.18. Amazing drop, right? My T4/Free was always in the reference range. Well, after reminding my PCP that I have osteoporosis, SHE suggested that I cut my Levo in half to 25 mil./day and perhaps by my next blood test, I could completely come off thyroid medicine. I was so happy.
Hi D,
It’s a good plan, just make sure you don’t feel worse as you drop your dose!
I’ve been taking a small dosage of levothyroxine for a year now (25mcg). Recently, I switched doctors and he recommended I stopped taking the medicine and that he doesn’t understand why I was put on it to begin with.
However, I still have some hair loss and other side effects. He said it could be due to me taking the medicine in the first place.
Do you recommend someone taking such a low dosage to stop taking it cold turkey or what process would you recommend ?
My doctor is going to keep me on it for 3 more months and then stop altogether. Is that safe?
Hi Maria,
It’s usually not a good idea to stop taking any medication cold turkey but the lower the dose the easier it is to get off of.
Reading all of these comments before make the decision to start my 13 year old daughter on Levo 75mg. She had a sports physical last week and I asked for blood work (mostly as a baseline, she had never had any) Well, Pedi was shocked as the TSH came back 69, next day antibodies were both positive>900. T4 low 2.7. Got in with Pedi Endo yesterday and she said Hashimoto’s, meds forever and didn’t even care to find the cause, no ultrasound, no more tests now. Redo bloodwork after 6 weeks of Levo. See you in 6 months. My question is…. should we try all of the natural things first Supplements, diet, etc. or does this sound like a case where the meds should be started. I just don’t want to go down that road if it is possible not to. Mild symptoms, if any.
Hi Kelli,
As long as your daughter is not in a life-threatening situation that would require the use of thyroid medication immediately, it’s always a good idea to exhaust natural therapies first.
Between 1960 and 1972 I was diagnosed with hyperthyroidism and took a medication for it (can’t remember what). In 1972 I had RAI and was told I then needed to take a medication because I would then have hypothyroidism. Since 1972 I have been prescribed just about every thyroid med there is. Not one has stabilized my thyroid, if, in fact it need to be stabilized. In 1972 I weighed 129 pounds. Today I’m taking liothronine 5 mcg am inching my way up to 180 pounds AND have lost a lot of hair. My last TSH was very high, I was told (I wasn’t given a copy of the results). I am approaching 81 years old and wonder if I can cease the thyroid med. Just as an aside, my mother at age 90 was prescribed her first thyroid med. It could never be regulated–up and down constantly. She passed away at age 94. Whether or not because of the thyroid med late in life or not I’ll never know. Would appreciate your comments and/or advice.
Hi Maryanne,
I’m not really sure I understand the question but if you are wondering if you can get off of thyroid medication the answer is probably a no. RAI is permanent which means that you have some degree of permanent damage to your thyroid gland.
I was put on 50mcg of levothyroxine by my Dr in November the problem is is that there was nothing wrong with my thyroid. He said it was because of weight gain and hair loss. Needless to say I had additional blood work in Feb and he raised my dose to 100 McG by the middle of march I was experiencing some really horrible side effects. Tremors, extreme Anxiety etc. So I called his office and he had me alternate days between 50-100 McG. By may 24th I couldn’t take any more of the side effects so I went to see my Dr and he had me stop taking it cold turkey. Which I did not knowing what was going to happen over the next 7 weeks. How much longer can I expect to feel like this. I have on days and then there’s just days where it seems like I can’t control my own body? Will these feelings ever go away?
Hi Christine,
The thyroid medication should be out of your system about 4 weeks after you stop but it may take several months for your thyroid function to get back to normal.
In 2010 because of high TSH I was started on Synthroid, For 5 months dosage was upped and downed per lab tests. I had NO SYMPTOMS at all! I quit the drugs cold turkey, as the side effects were intolerable, after which I felt fine. (Couldn’t afford to keep bouncing dr. to dr. The one I saw said he had never seen a case like mine.)
2021 deja vu – age 68, now with Medicare I went to a PCP who did new patient lab work. Very high TSH. Insisted on putting me on 150mcg Synthroid, which makes me feel worse than I’ve ever felt in my life. Prior to the drug, I felt fabulous! NO SYMPTOMS at all. After 1 month I cannot tolerate these side effects any more. Will be making an appointment with endocrinologist to find out why such outrageous lab results when I felt great. (PCP also said she had never seen such a high TSH with no symptoms.)
Would love to find a naturopathic physician, but insurance will not cover and I’m financially poor.
No known heath issues. Possibly a pituitary issue causing the high TSH?
What do you think of this feel great off drugs, feel horrible on drugs? I suspect, as I did in 2010, that I should not be taking levothyroxine.
Hi Brenda,
It’s hard to say what’s causing the issue without a lot more information. It would be reasonable to check your pituitary function, though, based on what you’ve stated.
Hi Dr Childs,
I am so happy I have come across your site after searching and searching for help. I have taken 25 mcg levothyroxine since 2017 all with the same mfr until this April the pharmacy changed mfr for my prescription. I had never been told to not change mfrs on generic levothyroxine because the dosing can be off. I started to slowly develop tremors in one hand and GI problems and by June I woke up one day with horrible shakiness, heart palpitations, anxiety, tiredness, dizziness. My primary ran test including thyroid which he said was normal so wrote that off. I then was sent to GI to have a scope and multiple testing which all came back good. My GI doc recommended I see endocrinology. Endocrinology kept asking are you sure your dose wasn’t changed? I said no but they did change mfrs. They explained then to me you don’t want to change generic brand because the dosing can be off and felt I was being over medicated. I am very sensitive so they felt that little could have triggered this and changed my prescription to brand name synthroid. They also thought I may not even need it and would work to try that. I cut my generic in half to take 12.5mg hoping the less amount would make me feel better until the pharmacy could order the brand name. Took 1/2 dose for a week and felt a little better. Went ahead and cut the synthroid in half when I got it and felt ok then started to feel off again. Dr said to just stop it for 3 months and they would test at 8 weeks. I have been off for 3 weeks. By the 2nd week my symptoms were horrible. My anxiety went extreme and they had to give me hydroxzine to be able to cope each day. I stopped it this week and can tell I am getting better but still so weak with mild symptoms. I am hoping I am on my way to getting better soon. My primary still refuses to agree this is my thryoid because my tsh test is normal range. I am hoping to not have to use it again when they retest me. Can you give me your opinion? Does this sound like something I would be going through being overmedicated? And how much more time do you think this could last till I feel normal again? Sorry for such a long story and thank you for your help. It is so appreciated.
Hi Yolanda,
Yes, those symptoms could be related to being overmedicated. If that is the case, then the symptoms should subside within about 4-6 weeks after you stop taking it.
After reading this article, I’m upset. My doctor told me I could stop taking my medication immediately. I was taking 0.25 milligrams. I asked if I had to wean myself off , and the answer was “no”!!!
Hi Gayle,
You can definitely stop taking it cold turkey, you just won’t feel well in the process. But you were on a fairly low dose so that may have impacted their decision.
Hi Dr Childs,
I have had a mild goiter for years (TSH = 5.0), but wasn’t really affected by it. Recently my goiter slightly increased with TSH = 8.0, T4 = 0.64, T3= 2.9 , TPO = 1000, TG = 1300.
Am not very happy being on medications and shocked by my results, since I do enjoy good energy levels and symptom-free so far (dr. agrees). My current PCP is not a thyroid specialist and follows the typical rationale that you mention in your blog posts.
At this point: I seem to have 3 options:
1) start with 25mcg levothyroxine for the first time(or talk to an endocrinologist) and consider the possibility of being dependent lifelong on thyroid meds
2) find natural alternative remedies to make my thyroid start working on its own. (takes a bit longer to reset, but better for me long-term). E.g. I normally eat a lot of gluten, goitrogenic foods (cabbage, nightshades), iodized salt is not helping much, so taking 2 pills of my multi-vitamin supplements to get RDA selenium, iodine and zinc. I also need to start taking probiotics to heal my gut and switch jobs to reduce my work stress.
3) A part of me is open to consider the natural diet-based approach to start lowering antibodies and to start weaning myself off levothyroxine (Synthroid). However, am concerned because my doc is adamant I will need this life long.
Am unable to decide if it’s crucial for me to get started on it ASAP or take some time to heal on my own. Am not sure if taking an extremely small dose of levothyroxine (with lifestyle changes) makes it likely that my thyroid hormones will keep trying to work or if it’s just going to keep making my thyroid hormones all the more sluggish?
Please advise.
Hi Dr Westin Childs.
I was tested for thyroid issues 2017 8 months after my son was diagnosed type 1 diabetic. As you can imagine those months leading upto my blood test was very very stressful time indeed. I had no symptoms apart from fatigue and burning and tingling in both hands 24/7. Bloods results came back showing i was borderline hypothyroid and doctor offered meds, symptoms never went away, I didn’t knowni also had hashimotos thyroiditis with my antibodies sitting in mid 500. I have been over medicated a few times but I’m now on 100mg of Levothyroxine and started as of today on small dose of t3 medication as looks like I’m not converting properly. I get bloods done privately as my GP only tests tsh and t4 ( here in UK) my antibodies are now sitting at 200. I supplement with iodine and selenium aswell as other vitamins. And since doing so the antibodies have been coming down.. I’m so glad I came across this article as I’ve been thinking about thisnissue of being on meds when I may not have to be… GP is hopeless so I will find a functional doctor and keep you posted to whether I get off these meds or not…..
@ Heather, it’s great to know that you are seeing a difference in antibodies with iodine, selenium supplementation. Have recently started ensuring I take regular multivitamin with RDA iodine, selenium, zinc, vit D and vit C in combination. Am curious to know how long it took you to see that marked reduction from 500 to 200 in antibodies.
Am also planning on taking black seed oil and aloe vera as additional supplements, to see if this helps naturally boost thyroid function as well. Will definitely post in here, if I see good results.
Hi Dr Childs,
I’ve been on thyroid for 5 years for a very slight problem originally with hypothyroidism, but now wish I’d never gone on it. My doctor felt I needed it. But I think I could have easily found other ways to simply boost my thyroid to work a little better.
For whatever reason, the med worked well only at first, but then I had to keep going up higher and higher on it because it would wear off, and now I’m finally at a place where I’m really no better off with my hypo symptoms than I was before going on the medication. It’s a waste of my money and I want to just come off and go back to square one. But I know it will only make me feel much much worse, like I’ve felt when I’ve tried to just come down on my dose. Major hypo symptoms. And I have chronic infections that get worse. My TSH is extremely low, like .007. It makes no sense to keep taking more. I’m already up to 150 mgs daily of Armour.
How do I get off this? Honestly, I was better off before I ever went on it! Wondering if there is some other drug or herb that can boost thyroid production while weaning off Armour. I feel trapped.
Hi Victoria,
Please see this article for more information on how to get off of thyroid medication:
https://www.restartmed.com/stop-taking-thyroid-medication/
https://youtu.be/fWQy12y-iNg
Hello
I have been on Natural Thyroid 1/2mg for about 5-6 years now. I was going through trauma and divorce. My THS level is and still is .90. T4is and has been 0.80 and T3 is 3.4. My Dr stated that I needed to get on meds. Like a car engine my ranges were low. My symptoms were dry scalp and hair some nails brittle.
I want to wean myself off of the meds to see snd I’ll go get blood work done after weaning off. Should one cut pill in half every other day for 4-6 weeks and then keep data or do 1/2 then 3/4 quarters. I was also just going to do a hormone boost supplement and make sure I’m eating all the right foods to help. My stress is less and I just don’t see any changes In my blood work every year since taking them. How will o know if they are doing anything if I don’t come off of them ? I also noticed my cholesterol went up while on thrn and not down. ?
Thank you for any answers.
Hello, I am taking 75mcg of dessicated thyroid. I changed my diet completely and am eating plenty of cruciferous vegetables s well as other things to help the thyroid function properly. You said that the dose should be decreased 25mg for Levothyroxine, so is it the same for dessicated thyroid? I’m getting plenty of iodine as well so I’m hoping I can reduce and eventually completely get off the medication. Thanks.
Hi Hamid,
I generally avoid making recommendations on how to increase the dose of any thyroid medication because each person is so different. Having said that, when it comes to NDT, making dose adjustments in the range of 1/4 of a grain tends to work well for most people.
So I should decrease 25mg per week?
Hi, I have been on Synthroid/ or its generic brand for 27 years for hypothyroidism. I have gone off and have asked my doctor to lower by dose to see what happens. Right now i am on 125Mcg. I am also taking right now for the past 6 months a supplement of beef liver with kelp which has iodine. I want to ask my doctor to do blood work and see where I am and then wait for a time to see what happens. I am asking your advice as to how to approach this. The reason I am on this Synthroid is 27 years ago I was diagnosed with Hep C and was put on Interferon injections. I started noticing strange things happening such as my eye were puffy and swollen. After finally convincing my Hep C doctor to check for any interactions and to check my blood because in fine print on the Interferon it said patients 1/1000 could develop thyroid issues. After testing my TSH I was diagnosed with Hypothyroidism. I should have just waited until I was done with the interferon for my body to adjust but I did as I was told by doctor to take medication for thyroid. can I go off of it ? Should I continue to use the Kelp and beef liver supplement? Thank you
Hi Margaret,
Unfortunately, that’s not something I can say for sure because I don’t know your full history. I would recommend checking out this resource which outlines the probability of getting off of thyroid medication: https://www.restartmed.com/how-to-get-off-of-thyroid-medication/
I love your clear and informative article. I was looking for advice on the best way to wean off. My doctor supports it but I was not sure about just stopping. Since I’m at 25 mcg only (Tirosint), should I take it every other day for a week then stop or what is the best guide? I was put on Tirosint 5 months ago by a different doctor based on one lab test with slightly high TSH and slightly high antibodies. I didn’t have any classic hypo symptoms. I will explore your natural methods if needed after weaning off. Thanks!
Hi Linda,
Because 25mcg is a pretty small dose you may just be able to cut your dose in half and go from there. You could probably even get away with just stopping cold turkey but you’d want to be careful trying something like that. Your proposed every other day dosing would also be reasonable.
Hi Dr. Childs,
I *promise* I’m not asking for medical advice… But let’s say – hypothetically – someone was on 50mcg of Levothyroxine for a slightly low T4 (.7) and a normal/low end TSH.
And let’s say, hypothetically, that aforementioned patient took this dose for 2 years, seemed to stabilize- then lost quite a bit of weight intentionally- and now has a TSH of .2, a normal/low T4.
Would you brush said patient off and say “see you in 6 months” or would you take them off or lower the 50mcg of Levothyroxine?
Also this hypothetical patient is experiencing hyperthyroid symptoms.
I would more than appreciate your input! And thank you immensely for this website.
Hi Dr Childs,
I was recently put on levothyroxine 25microgram due to underactive thyroid. Before I knew this, I had two miscarriages, and the doctor told me most probably thyroid issues caused them. My first pregnancy was perfect, with no problems at all. I developed hypothyroidism after I had my first child. The endocrinologist told me I would be on levothyroxine all my life?! I wonder if I can get off them after a certain period, and if so, how will it affect future pregnancies?
Hi Dijana,
The standard advice that once you start thyroid medication you must take it forever is wrong. Up to 30% of thyroid patients can get off based on newer studies/research. You can learn more here: https://www.restartmed.com/how-to-get-off-of-thyroid-medication/
Whether or not you fall into that 30% is another story entirely but that article will help you figure it out.
Re “Have you been able to stop taking your thyroid medication?” Yes, I was on Cytomel (T3) monotherapy since 2010 but since April 2019, was able to/had to gradually titrate my dosage down in small increments over the past 3 years so have been off thyroid med now since April 26, 2022 thanks to a couple of decades of anti-inflammatory measures taken in diet, lifestyle habits & personal environment, some forms of BHRT since 2017 (no estrogen though due to high cancer history on both sides of my family) but most especially, since 2019 – Low Dose Naltrexone (LDN), a novel anti-inflammatory & immunomodulator (means LDN works to restore balance to immune function).
Re “Do you know why you were taking it in the first place?
Yes. First became life-altering ill in 1999 with 24-7/365 pain & fatigue which in 2004, rheumatologist dxd as FMS/CFS & in 2010, endocrinologist dxd Hashi’s with hypothyroidism. I have conversion problems so was intolerant of any T4 (tried Synthroid & then Erfa Thyroid but both meds sent my then fibro pain right through the roof!) so had been on Cytomel (T3) monotherapy for the past 12 years which worked great for ‘my’ body.
Dr recently confirmed from thyroid lab & symptom picture that I am now in remission of Hashimoto’s & no longer require thyroid med. Have been reading up on and so am seriously considering taking a guggul supplement so as to ensure that my T3 stays at a good level being it’s the active thyroid hormone needed/used by the cells as this herb aids in the conversion of T4 to T3.
Hi Mare,
I’m a big fan of guggul extract which is why I’ve included it in my thyroid conversion supplement: https://www.restartmed.com/product/t3-conversion-booster/
You can also read more about guggul and its benefits here: https://www.restartmed.com/guggul/
This information was so helpful! I have been taking 125 mcg. Since 1994, within 6 months of the birth of my last child. I had a few fluctuations in 1999 and was diagnosed with premature ovarian failure by my endocrinologist. After 10 years of HRT (Premarin and Progestin) I’m only on 125 mcg. Synthroid. The last couple of years my TSH has been coming in at <.02 and .30. My FT4 at 1.57 and 1.49. I asked my MD (haven’t seen the Endo since 1999 after starting HRT) why isn’t she lowering my Synthroid? She said because my FT4 was normal. I have remained on the 125 mcg. For the last two years. I have been miserable!
1. Lycus planus in my mouth
2. Blood pressure rising
3. Can’t sleep
4. Anxious
5. Irritated
6. Shaky hands and legs
7. Huge digestive issues 6-8 tums a day
Many other things not even worth mentioning.
Since she wouldn’t lower it and I can’t find a decent Endocrinologist in my area, I started cutting my dosage in half two months ago. I feel fantastic!!! All of the symptoms listed above are gone. I had to do something and decided to listen to my body. I figured if I started to feel run down and tired I would move it back to 2/3’s or even 3/4’s if need be. I’m searching for a new doctor and hope to have one by my next physical in August 2023 or earlier if I don’t feel right. I’ll be honest so that when my new labs come then we will be on the same page. I just feel great!
Hi Diana,
You may have been someone that was incorrectly placed on levothyroxine in the beginning. It’s really hard to know for sure but I’m glad you are doing better.
I was diagnosed by my OG/GYN as hypothyroid in between my two pregnancies 12 years ago and have been on Levo or Synthroid ever since. About 5 years ago my TSH number was getting close to 5 when I was on .5, so I was referred to an endo who raised my dosage to 1.0. It brought my TSH back to 1.4 and was stable for 2 years and felt good and I have been at that same dose since. Now in the last 4 years my TSH is going down each year, and was .5 at the last appointment. My BP has also been inconsistently increasing in that same time frame. My doctor is only testing my TSH and says it is still fine, but the trend down to the lowest TSH number I have had in 10 years tied with the increased BP readings (sometimes normal, sometimes not) seems important to note before I’m just put on BP medication as well. Could there be a connection? Is it possible that I am over medicated now and my dosage needs to decrease?
Hi Sarah,
The TSH level is tied to the dose of levothyroxine that you are taking. The more levothyroxine you take, the lower your TSH will go. So, yes, it is possible you are taking too much: https://www.restartmed.com/levothyroxine-overdose/
I had half my thyroid removed at a young age due to a growth a cyst no meds were ever prescribed until I moved countries then all of a sudden it was a problem I was put on synthroid however I do not take it haven’t for years still get my prescription but don’t take it I read it causes lung cancer not sure if that is correct but that frightened me I had spoke to my doctor and she said that’s why we monitor you. I feel OK I sometimes get burn out but who doesn’t