Can you Stop Taking Thyroid Medication Once You Start?
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.
- 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 which 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 the TSH is a pituitary marker and not necessarily an accurate measurement of thyroid status in your body.
There are times where 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 that 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 some percentage of thyroid patients who take thyroid medication who fit into this category.
But how does this happen?
There are several known conditions which 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 temporary.
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.
They 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 which 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.
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 which 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!
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