End Stage Hashimoto's - What Happens if you don't stop the damage
As someone who has Hashimoto's thyroiditis, you should be very aware of a late stage complication of that disease known as End Stage Hashimoto's.
End stage Hashimoto's refers to the later stages of this disease in which there are complete atrophy and damage to the thyroid gland.
For all intents and purposes, you can consider end stage Hashimoto's and complete thyroid atrophy in the same ballpark as having your thyroid removed or completely irradiated with radioactive iodine.
Even though these conditions are all different they all result in the same thing:
Complete inactivity of the thyroid gland (either through removal as is the case in surgical removal of the thyroid gland or functional inactivity such as RAI and end stage Hashimoto's).
Why should you care?
Well, for several reasons.
But I think the most important is the fact that there may be a chance for you to either SLOW down this permanent damage or completely reverse it.
You might think to yourself, "Great, I'm already doing that with my doctor!" but this is where you would be very wrong.
Doctors, including endocrinologists and primary care physicians or family practice doctors, don't really care about the diagnosis of Hashimoto's or the diagnosis of end stage Hashimoto's.
Both of these conditions (early and late) are treated the same way to them, with thyroid medication.
But thyroid medication does NOT stop the inflammatory damage that accompanies autoimmune thyroiditis (Hashimoto's thyroiditis).
In order to stop and reduce this damage and inflammation, you need to take extra steps on top of using thyroid medication (more on that below).
As a Hashimoto's patient, you should be aware that your main goal in managing your disease is to try and PREVENT end stage Hashimoto's from occurring and to try and retain as much native thyroid function as possible.
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5 Signs of End Stage Hashimoto's
The good news is that it takes a long time for end stage Hashimoto's to really set in.
And I mean a long time.
We are talking probably somewhere around the order of 20-30 years (sometimes more and sometimes less).
In order to reach this late stage of this disease you really need to have not treated or attempted to treat/manage your Hashimoto's for several decades.
So, if you are reading this there is a good chance that there is still time for you to do something about your condition to try and prevent this issue from occurring!
But there is also bad news.
The bad news is that MOST people with hypothyroidism (low thyroid function) have Hashimoto's and a great many people have no idea that they do.
It's not common for doctors to test thyroid antibodies routinely so many people with hypothyroidism have Hashimoto's without realizing it.
And I've lost count of the number of patients that I've treated who have no idea why they take thyroid medication but who have been on it for 20+ years.
These patients are often surprised when I check their thyroid antibodies and notify them that they have Hashimoto's thyroiditis.
Some of these patients may have had it all along and others may have only developed it recently but it's impossible to tell for sure.
So it may be the case that you already have late stage Hashimoto's even if you never knew you had the disease in the first place.
It's a big bummer if this happens but it does occur from time to time.
The reason for this article is to highlight the symptoms associated with late stage Hashimoto's so you can try to figure out if you're there or if you still have some time.
#1. Thyroid Gland Atrophy.
The first, and probably most important, symptom associated with end stage or late stage Hashimoto's is complete thyroid gland atrophy.
Atrophy refers to the shrinkage of a target tissue or gland which typically indicates it is either damaged or nonfunctional.
Atrophy occurs in your muscles if you don't use them (muscle atrophy) and even occurs in some inflammatory conditions such as cirrhosis (1) (liver damage).
In the case of your thyroid gland, atrophy is never a good sign.
In the case of Hashimoto's thyroiditis, it indicates that your thyroid has been damaged from inflammation and autoimmunity for years and years.
Once you get to this point there is typically very little if any native thyroid function present.
And, sadly, thyroid gland atrophy is not a reversible condition.
Your thyroid gland can handle some damage from inflammation and even some swelling.
It can bounce back from these things but this doesn't appear to be the case in thyroid gland atrophy.
How do you know if you have thyroid gland atrophy?
The easiest way to diagnose this condition is with a thyroid ultrasound.
All thyroid gland ultrasounds provide you with information on the size and appearance of your thyroid gland.
If your gland is atrophied, your ultrasound report will say something to that effect.
It will mention that the thyroid gland has reduced volume and that it looks atrophied.
If you don't see this on your ultrasound report (under the impression section) then you don't need to worry about it.
This is not something that is easily missed (unlike other aspects of thyroid function and monitoring).
You can also assess the size of your thyroid gland by simply feeling your thyroid gland in your neck.
If your thyroid gland is of normal size you should be able to feel it through your skin and on your neck.
As your thyroid gland atrophies, it becomes more difficult to feel your gland until it is imperceptible to physical touch.
This method is obviously less accurate and more difficult to do than an ultrasound but it's also very quick and easy and cheap!
But don't freak out if you can't feel your thyroid gland, it's often missed by many residents and medical students before they become skilled at testing for it.
#2. Lower levels of Thyroid Antibodies.
Another sign of end stage Hashimoto's is that your antibody levels may DROP or REDUCE.
I'll explain why this happens in just a sec, but let's talk about your antibodies for a moment.
When I talk about thyroid antibodies I am talking specifically about TPO antibodies and thyroid peroxidase antibodies.
You can test for these antibodies in your bloodstream and if they are present they most likely indicate that you have Hashimoto's thyroiditis.
The presence of these antibodies is an indication that your own body is attacking itself.
So you really don't want to see them elevated at any given time.
But if your antibodies are dropping isn't that a good thing?
You would think so and in most cases, it would be true.
But in the case of end stage Hashimoto's it's quite different.
You see, there are really two ways to reduce these damaging antibodies.
The first is to reduce inflammation and autoimmunity by focusing on your own immune system.
This is good and something that you want.
The second is to take away the tissue or organ that these antibodies are targeting.
If that tissue isn't around anymore then obviously those antibodies won't be created.
And this is what happens with end stage Hashimoto's.
As your thyroid becomes irreversibly damaged and nonfunctional your antibody levels may drop.
Not because your body has improved but because it basically annihilated your thyroid gland into nothing.
And I've seen a number of patients who think that their condition is improving because their antibodies are gone who don't realize that the only reason they have dropped is because their thyroid is destroyed.
Tracking your antibodies is important because it can help you determine if you are on the right track (or wrong track) and it can also act to help you determine how advanced your disease state is.
This isn't a perfect test by itself, however, which is why you still may want to get an ultrasound if you think you have complete thyroid atrophy.
#3. Extreme Difficulty with Weight Loss or Unexpected Weight Gain.
Another important symptom has to do with your weight and metabolism.
Once your thyroid has been completely destroyed you are really in the same boat as those who don't have a thyroid at all (those who are post thyroidectomy or post surgical removal of their thyroid gland).
And these patients have a very difficult time managing their weight.
Most patients who have their thyroid removed gain about 15-20 pounds immediately afterward (2) and most never get back to their normal weight.
This is because no matter what medication you take by mouth to replace the lost thyroid hormone your body used to produce it will never be the exact same.
If you are someone who has unexplained weight gain over the last few months to years AND you have a long standing diagnosis of Hashimoto's then this may be a sign you have reached the later stage of your disease.
A closely associated symptom is that of weight loss resistance or the inability to lose weight.
Late stage Hashimoto's may manifest as weight gain initially but it can also manifest as the inability to lose weight despite your best efforts.
Both symptoms are important to look out for.
#4. Stable Thyroid Lab Tests.
Another sign of end stage Hashimoto's is that of stable thyroid lab tests.
At first glance, you might think of this as something that is good.
Don't you want your thyroid gland to be stable?
And the answer is yes, you do.
But you want it to be stable because it's functioning on its own! Not because it can't function at all.
As someone with Hashimoto's, you are probably well aware of the ups and downs associated with this disease.
Hashimoto's thyroiditis can cause hyperthyroidism, hypothyroidism, and even immune mediated symptoms.
All of these symptoms stem from the impact that inflammation has on the thyroid gland.
Sometimes it will push out more thyroid hormone than necessary (causing hyperthyroidism) and other times not enough (causing hypothyroidism).
But if your thyroid gland is completely atrophied or destroyed, you won't see the fluctuations that you used to in the early stages of your disease.
You should keep an eye on your thyroid lab tests periodically no matter what but make sure you look for stable lab tests which are ALSO accompanied by persistent symptoms of hypothyroidism.
This presentation may be an early indication that you have late stage Hashimoto's.
#5. Reliance Upon Thyroid Medication for Symptom Control.
The last sign to watch out for is complete reliance upon thyroid medication for symptomatic control.
Why is this important?
Because in early Hashimoto's your thyroid gland is damaged but not irreversibly so.
So even if you are taking some thyroid medication your thyroid gland is also producing some thyroid hormone on the side as well.
This means you are getting thyroid hormone from two sources:
#1. Your own thyroid gland (the function depends on how much damage is present).
And #2. From whatever thyroid medication you are currently taking (depending on your dose).
And this is a good thing!
Most thyroid patients probably don't realize or appreciate how much thyroid hormone their own gland can produce even when it is damaged.
They start to appreciate it once it no longer works, though, as once this occurs you are completely reliant upon thyroid hormone medications for all of your needs.
And this reliance makes managing your medication quite difficult.
Your own thyroid gland can make changes on an hour by hour basis, it knows when to convert T4 into T3, when not to, and so on.
All of these things are done without you even realizing it.
And once your thyroid stops doing this, your doctor puts you on a once a day thyroid medication dose and calls it a day.
Do you really think that all of these things will occur on the backend by taking the same dose each and every day?
Not a chance, which is why many people without a functioning thyroid gland struggle with thyroid symptoms despite taking thyroid medication.
So keep an eye on your own native thyroid function by seeing how you respond to various doses of thyroid medication.
If you see that your thyroid medication dose is consistently increasing over time that is generally a sign that the damage to your thyroid gland is progressing and it's something that you should pay attention to!
Preventing End Stage Hashimoto's, is it possible?
What are you supposed to do, though?
Is there any way to actually stop or prevent end stage Hashimoto's from occurring?
The answer is yes but it requires therapies and treatments which you won't get from your current doctor.
As I mentioned previously, doctors focus primarily on the thyroid hormone aspect while neglecting the immune and inflammatory components.
We can talk about all of the reasons why they do this but it's really not important for this conversation.
You should just know, however, that 99% of them think this way.
So don't expect them to bring it up in conversation and don't be surprised when your doctor throws you on thyroid medication and calls it a day.
This is just how it's done for conventional doctors.
The good news is that there are therapies that YOU can do which can impact the inflammatory and immune components.
These therapies include things like:
- Taking specific supplements
- Changing your diet
- Taking specific medications (typically off-label)
- Using thyroid medications (beyond levothyroxine and Synthroid)
- Managing your stress
- Finding the root cause (whatever triggered your disease) of your Hashimoto's
- Treating chronic viral infections (if present)
- Using CBD oil
- And so on...
All of these therapies target the most critical aspect of Hashimoto's which is that immune component.
By targeting your immune system (and regulating it) you can stop the damage to your thyroid gland before it becomes irreversible.
If you have Hashimoto's thyroiditis then you should be keeping an eye out for these 5 signs!
If present, they may indicate that you have reached end stage Hashimoto's thyroiditis.
Your goal, as a thyroid patient, should be to try and avoid this at all costs!
Do whatever it takes to manage and control both your thyroid and your immune system.
Now I want to hear from you:
Do you have any of the signs or symptoms associated with end stage Hashimoto's listed above?
If so, which ones?
Are you concerned that you may have thyroid atrophy? Or do you know for a fact that you do?
If so, which symptoms are you currently struggling with?
Which therapies have or have not worked for you?
Leave your questions or comments below to keep the conversation going!
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