Want to know why there is so much confusion surrounding thyroid medication and treatment?
You need to look no further than the reports from other individuals in the EXACT same situation as you.
In this article, we are going to explore statements from existing thyroid patients and explain why two patients can react in completely opposite ways even to the same medication.
And this should help you understand why there may appear to be inconsistencies or discrepancies in the world of thyroid management.
Why are Thyroid Patients Confused?
I found this information from a recent study and wanted to share it with you because I really feel that it highlights some very important points about treating the thyroid.
Every single day I get questions and concerns from thyroid patients who see information online which they believe is contradictory, they even point out some information that I have on my site.
On the surface, it may look like this information is contradictory, but it will be made more clear to you once you have a better understanding of how thyroid disease impacts each person.
The statement, "Levothyroxine made me feel good when taking it".
This statement is objectively true for the person who gave it but it can also be false for many other people who take it.
If you are someone who is taking levothyroxine and feeling well, then it is going to be true for you.
But what if you are someone who is taking levothyroxine and gaining weight, feeling persistent fatigue, and other symptoms of hypothyroidism?
Then it's objectively false for you.
And this can be confusing for thyroid patients who just want a simple solution to their problems.
Believe me, I wish it were that easy, but the reality is that it isn't (at least not yet).
What does this mean for you?
It means that you will need to spend time and energy to try and find what works for you.
It also means that it is nearly impossible to predict how you will react to any given thyroid medication or therapy without some element of trial and error.
To drive this point home, I've included direct quotes from various thyroid questionnaires from real thyroid patients with real thyroid disease.
You will find that there is a HUGE discrepancy in how these patients react and respond to the treatments that they have undergone.
What I've done below is simply outlined the quote and explained how it is possible for some people to experience these symptoms and what may be there next step for them (if relevant).
This should be helpful to you because you will probably find that align with one or more of these quotes which can really be thought of as a proxy for major segments of the thyroid population in terms of how they are feeling and how they respond to medications.
Where do you fit in?
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Thyroid Patient Statements/Quotes (With Commentary):
You can find the study which references these statements here (1).
The study referenced explores the potential reasons why thyroid patients tend to be so unhappy (2) with their current therapies and offer reasons as to why this might be the case.
I've already explored these reasons on this blog before so instead of focusing on those we are going to focus on the statements from real thyroid patients.
#1. "Levothyroxine was worse than nothing."
Believe it or not, there are a number of people out there who start on levothyroxine (or Synthroid) because they have abnormal lab tests but then do much worse after doing so.
I've mentioned this before in other blog posts where I show that levothyroxine can cause weight gain in certain individuals.
These types of comments spark a lot of controversies because there will always be a number of people who do well on levothyroxine.
So, how can it be that some people prefer nothing over the medication that is working for you?
Well, the answer is not as simple as you might think and, frankly, we don't actually know why this occurs.
I have some theories, however, and among those theories include individual genetics, the fact that the TSH lab test (which most providers use) may not be the best indicator of overall thyroid function, and other problems such as T4 to T3 conversion limitations.
These are all potential reasons why some people may do worse on levothyroxine compared to nothing.
What are you supposed to do if you fall into this category?
My experience suggests that there are two main steps that you can take:
#1. Consider switching medications.
While it's possible that levothyroxine is not the best medication for you, you shouldn't let this bring you down.
Because there are PLENTY of other thyroid medications available for you to choose from and they are all different.
You might find that you do very well on combination T4 + T3 medications vs T4 only medications.
#2. Consider getting off of levothyroxine all together.
This might be the best news of all.
Perhaps the reason you aren't doing well on levothyroxine is an indication that you simply don't need thyroid medication.
This means there may be a chance that you can wean yourself off of the medication and not have to go back on it ever again.
You can learn more about this concept in this article.
#2. "On levothyroxine, I felt myself getting sicker and sicker every single day."
Even though this comment is similar to the comment listed above, there are some important differences.
It's one thing to simply do better without thyroid medication (but still remain symptomatic) and it's another to experience WORSENING thyroid symptoms as you take thyroid medication.
This statement is another controversial statement among thyroid patients and even doctors because it seems to contradict the very purpose of thyroid medication.
When you are hypothyroid and need thyroid medication, that thyroid medication is supposed to act as a supplement for whatever your body is not able to produce.
If this is true (and it is physiologically), then you should feel BETTER as you take thyroid medication.
Your hair fall should stop, you should start losing weight, you should have more energy, your body shouldn't ache, your brain fog should dissipate, and so on.
But what if all of these things get WORSE as you take thyroid medication?
It puts you in a very precarious situation and most doctors might not even believe that this is possible.
But it certainly is, and I've seen it many times.
Why does it occur?
Again, we don't know exactly but my best theory has to do with problems in peripheral T4 to T3 conversion.
In order for thyroid hormone to be active, it must be converted into its active form and this process is not complete if you are taking levothyroxine.
It's well known that certain conditions can inhibit this conversion process which means that there are some people taking levothyroxine who are unable to activate it and gain the benefit from its use.
To complicate matters further, if your body can't convert thyroid hormone into in its active form (T3) your body will convert it into its inactive form (reverse T3) which then competes for T3 receptor binding (3).
This mechanism may explain why some people actually feel worse when taking thyroid medication like levothyroxine which just add fuel to the flame as your body is unable to activate or convert T4 into T3.
#3. "Just please find something that gives me my life back."
I don't think this statement is unique to a specific therapy, but I will say that I see this sentiment left more often when talking with patients who take medications like levothyroxine and Synthroid.
But I have also heard this phrase uttered by those taking NDT and/or T3.
So I think this statement is more reflective of a persistent hypothyroid state but it doesn't necessarily tell you anything about why you are in that state, to begin with.
The good news is this, though:
As far as I can tell, there is always a way to feel better than whatever you are feeling right now.
It may not be possible to get your life back to 100%, but it's certainly possible to get very close to that mark.
If you are someone who is in this boat then make sure that you put effort and energy into finding a doctor who can help you start improving.
You can use this resource to help.
#4. "I feel good while on levothyroxine."
This is another statement which is absolutely true and one which can spark a lot of controversies, especially among certain thyroid advocacy groups.
It's just a fact that there are plenty of people who do well on levothyroxine.
This doesn't take away from the effectiveness of other medications such as NDT or T3, it just means that certain people can do well on T4 only thyroid medications.
I see a number of people on the internet who have become so anti-levothyroxine that they believe the medication is pure poison and will harm everyone who uses it.
This isn't true.
It may be partially true in the sense that it doesn't work well for you, but I can promise you that there are plenty of people who use it and feel great.
I learned this the hard way when I first started practicing and treating thyroid patients.
I used to put everyone on NDT because I just thought it was a superior medication.
But I quickly found that there were people who didn't do well on the T3 and these people suddenly started to thrive when switched to T4 medications such as levothyroxine.
If you are someone who does well on T4 then keep using it, there's no reason to switch if you are asymptomatic and your weight is normal.
#5. "Now I take T3 also and started feeling better, but I still do not feel well."
Why do some people who use combination therapies do better than others who are using the exact same combination but not feeling well?
This probably comes down to the dose of the medication you are using and the individual demand for thyroid hormone in your body.
This gets into a more complex situation with thyroid dosing as you start to understand that the ratio of T4:T3 that each person needs must be adjusted.
You might be someone who does well on a T4:T3 combination of 90% T4 and 10% T3.
Others might do well on a combination closer to 80% T4 and 20% T3. And even others might need something closer to 50% T4 and 50% T3.
Most doctors who use T3 tend to stick to ratios which heavily favor T4 over T3, meaning that they will use doses of thyroid medication which provide something like 95% T4 and 5% or less of T3 or a ratio of 95:5.
This dosing combination may work GREAT for some people, but what if you are someone who needs 20 or 30% of your thyroid medication as T3?
If so, then you will only notice a small improvement on that ratio and it's not until you take more T3 that you will feel better.
And this can work in reverse as well, some people may need more T4 relative to T3.
#6. "Combination therapy changed my life and health. In my view, it is the best therapy for hypothyroidism."
My own personal beliefs and experience actually tend to align with this statement.
I believe that, whenever we replace hormone deficiencies in the body, we should attempt to replace them in such a way which matches the normal production amount and cycles that the body produces in a healthy state.
And, it turns out that we have this data for our thyroid.
To me, this seems like a reasonable place to start with thyroid replacement for MOST people.
It won't work for everyone, but it seems more logical to start here compared to starting at 100% T4 which is what most doctors do.
If you aren't sure what combination therapy is, allow me to explain:
Combination therapy is meant to describe people who are taking thyroid medication which contains both T4 and T3.
It isn't clear which type of combination therapy is being referenced by this statement but it could be read as either.
One thing to be careful of, however, is absolute statements when it comes to thyroid hormone replacement.
Statements such as "I believe it is the best therapy for hypothyroidism" fit into the category of absolutes.
While it may be true that it works for many people it's certainly not true that it works for EVERYONE.
#7. "I was finally put on extract after 28 years on other options. I would never go back."
These medications can potentially be great but their importance in the grand scheme of thyroid management is sometimes inflated.
While I do think there are advantages to using NDT you must also compare these to the disadvantages as well.
The T4 to T3 ratio found in NDT is about 77% T4 to 23% T3.
This ratio is great if you are someone who does well on around that 80:20 T4:T3 that the thyroid gland produces naturally but what if you are someone who needs more or less than that?
The problem with these medications is that their doses are static in nature.
In addition, there is also a theoretical chance that consuming animal-derived proteins may trigger an immune response in some individuals.
These problems don't necessarily outweigh the positives, such as getting your life back, but they should certainly be considered!
#8. "Had a thyroidectomy many years, no adverse reaction or symptoms."
It's rare but it certainly does happen.
There have been cases of famous actors who have their thyroid removed (for whatever reason) who then proceed to have no issues with weight, fatigue, or other hypothyroid symptoms.
But, even though this can occur, it's certainly not the norm.
Weight gain after thyroidectomy, for instance, is so common that we have plenty of clinical studies which show that the average weight gain after thyroidectomy (5) is close to 20 pounds.
It would be one thing if it was a rare consequence or side effect but it's another if the average is an unacceptably high number.
These statements are important, however, because they do suggest that some people can do well on levothyroxine monotherapy after thyroidectomy.
And there are many cases where removing your thyroid is not optional, as in the case of thyroid cancer.
It would be unwise to suggest that someone doesn't get their thyroid removed for fear of weight gain if they are currently suffering from thyroid cancer.
On the other hand, I've also written and provided a compelling argument as to why levothyroxine is probably insufficient for at least 20% of people who have their thyroid removed which you can read about here.
#9. "If you find something that improves mental clarity and energy, we'll have something to discuss."
Not everyone with thyroid disease will present with the typical symptoms of cold intolerance, weight gain, body aches, and so on.
To some people, the main symptoms that they feel are related to their mental cognition and mental energy.
I find this is especially true for those with highly demanding mental jobs in areas such as law, corporate positions, and medicine (there are others, but these come to mind immediately).
The problem with patients in this category is that they can often be misdiagnosed or mislabeled because they don't fit the typical mold of what hypothyroid patients look like.
This can lead to therapies
I will also point out that I feel that there is a strong connection between hypothyroidism and adrenal function and how this connection plays out symptomatically.
Patients who have issues with adrenal function (or serum cortisol levels) in addition to thyroid disease often showcase the symptoms of brain fog, reduced mental energy, and focus more than patients who primarily suffer from just hypothyroidism.
This isn't a hard and fast rule, but it is a trend that I've seen while practicing on people.
So, if you fit into this category be sure that you have your serum cortisol levels evaluated and look for conditions such as burn out syndrome (6).
#10. "I am on levothyroxine and have weight gain, brain fog, and pain in my points."
This is can really be thought of as an extension of points #1 and #2.
These are people who probably feel the same way for the reasons described in those points.
This statement is important, however, because it outlines that there is a spectrum of tolerance as it relates to levothyroxine.
Some people do very poorly on it, some people do poorly on it, others notice no difference, others notice some benefit, and others notice an significant benefit.
You can pretty much fit anywhere on this spectrum and the reason for it has to do with your dose, absorption rates, genetic variances, and peripheral thyroid conversion.
What I really wanted to outline in this article is just so diverse treating thyroid patients can be.
As a thyroid patient, you may become confused about the information you read at some point on blogs such as mine and it may even feel like some of the information is contradictory.
It's not that the information is necessarily contradictory but that the information may not apply to your specific case.
This is one of the reasons that I am so passionate about managing thyroid disease.
Management is so unique that you basically need a fresh approach for each and every patient that you see.
But now I want to hear from you:
Where do you fit on this spectrum?
Are you someone who knows what you respond well to?
Have you found the magic medication or therapies that work for you?
What have you tried (without success)?
Leave your questions or comments below!
References (Click to Expand)
This post was most recently updated on August 23rd, 2019