Although most cases of thyroid eye disease are mild, some people with this condition do experience moderate to severe symptoms. This can include symptoms such as eye bulging, pain, difficulty closing the eye, and double vision. While the goal should be to address the underlying cause of the problem, there are situations when conventional treatment is necessary. On January 21st 2020 a new medication was approved by the FDA that looks very promising for those with moderate to severe thyroid eye disease.
Whenever I write a blog post related to conventional medical treatment I’m sure there are some people who question why a natural-related site would put out such content. The obvious reason is because while the focus of this website will always be on “natural solutions”, there is a time and place for conventional medical treatment, and I think it’s important to keep an open mind. Everything comes down to risks vs. benefits, and while I’ve had success using natural treatment methods in people with thyroid eye disease, more severe cases are less likely to respond to a natural treatment approach.
So while I would like to say that everyone with thyroid eye disease can benefit from natural treatment methods, unfortunately this isn’t the case. I admit that sometimes it can be challenging to know when conventional treatment is necessary, as I’ve had some people with moderate cases of thyroid eye disease respond to a natural treatment approach, but I’ve also had others who didn’t respond. Not surprisingly, many people prefer not to receive corticosteroids, even when their eye symptoms are severe, but I’m sure some will be more open to this new treatment option I’m about to discuss.
The Relationship Between IGF-1R and Thyroid Eye Disease
Graves’ disease is an autoimmune condition that involves the binding of thyroid stimulating immunoglobulins to the TSH receptor, which causes the excess secretion of thyroid hormone. The autoimmune component is also responsible for the development of thyroid eye disease. And while the same thyroid stimulating immunoglobulins might play a role in thyroid eye disease, it’s not as simple as these antibodies attacking the tissues of the eyes. I also should mention that a small percentage of people who don’t have Graves’ disease develop thyroid eye disease.
Insulin-like growth factor 1 (IGF-1) is a 70-aminoacid polypeptide hormone with endocrine, paracrine, and autocrine effects (1). It is produced in the liver, and it acts to provide an inhibitory feedback signal on growth hormone secretion in the hypothalamus (1). IGF-1 has different roles in the initiation and progression of different diseases, as in some cases it can help with cell survival, but in other cases it can lead to the development of cancer (2).
A 2012 journal article discussed the role of the insulin-like growth factor 1 (IGF-1) receptor in the development of thyroid eye disease (3). Fibroblasts are cells that produce connective tissue proteins, and they also play a role in the development of thyroid eye disease. The journal article discusses how elevated levels of the IGF-1 receptor have been found in orbital fibroblasts as well as B and T cells from patients with Graves’ disease (3). Apparently IGF-1R forms a complex with the TSH receptor, and inhibiting this complex can greatly help people with thyroid eye disease.
What Is Teprotumumab?
Teprotumumab (the brand name is Tepezza) is the new medication that can help people with thyroid eye disease. The way it works is by binding to the IGF-1R, which causes degradation of the antibody-receptor complex I mentioned above. This in turn has been shown in trials to decrease proptosis, double vision, and other symptoms associated with moderate to severe cases of thyroid eye disease. Unlike other non-surgical options for thyroid dye disease (i.e. corticosteroids), teprotumumab can stop the progression of thyroid eye disease.
Teprotumumab vs. Other Thyroid Eye Disease Treatments
Glucocorticoid therapy and orbital radiation can help to reduce orbital inflammation. However, unlike teprotumumab they don’t do anything to stop the progression of thyroid eye disease. Surgery is sometimes indicated for severe cases of thyroid eye disease, as some receive orbital decompression, while others will receive eye muscle surgery and/or eyelid surgery. But the research shows that teprotumumab can be as effective as surgical intervention. So while taking teprotumumab usually shouldn’t be the first treatment option for those with thyroid eye disease, if someone has a severe case and surgery is recommended it makes sense to give teprotumumab a try first.
That being said, it’s important to mention that teprotumumab is only effective during active thyroid eye disease. This usually lasts from 6 to 24 months, although in some cases it can be present for up to three years. Inactive thyroid eye disease is usually stable, and since significant improvement is less likely, surgery is commonly indicated for severe cases.
What Does The Research Show?
Both phase 2 and phase 3 trials show that patients treated with teprotumumab improved significantly compared with the placebo group (4) (5). Even though the treatment consists of 8 intravenous infusions given every 3 weeks, many people showed improvement after only 6 weeks (3 infusions), and the phase 2 trials showed that 71.4% of teprotumumab-treated patients had ≥2 mm reduction in proptosis at week 24 (5). For the most part teprotumumab was well-tolerated, but I’ll discuss some of the common side effects shortly.
Dosing and Administration
As I briefly mentioned when discussing the research, teprotumumab has to be administered through intravenous infusions, which of course is a major inconvenience. The good news is that it’s only given once every 3 weeks for a total of 8 infusions. The dose depends on the patient’s weight, and the starting dose used in the studies is 10 mg/kg, followed by 20 mg/kg.
Side Effects and Contraindications
These are some of the potential side effects of teprotumumab:
- Muscle cramps
- Spasms
- Nausea
- Hair loss
- Diarrhea
- Fatigue
- High Blood pressure
- Hearing problems
- Taste changes
- Headache
- Dry skin
As for the contraindications, since teprotumumab can cause harm to a fetus it is contraindicated during pregnancy, and therefore cycling women receiving treatment should use effective contraception during treatment, and for 6 months after the last dose (6). Teprotumumab can also worsen inflammatory bowel disease (Crohn’s disease and ulcerative colitis), and because it can cause hyperglycemia (increased blood sugar) those with diabetes need to be cautious when taking this medication, and should be under the guidance of a competent healthcare practitioner.
Are There Long Term Side Effects?
Because teprotumumab is new there are no long term studies, and because of this some people might be hesitant to take it. In fact, if I had severe thyroid eye disease the lack of long term studies would make me think twice about taking this medication. But if I had moderate or severe thyroid eye disease that was getting worse and the only other option was surgery I still might choose taking this medication.
Obviously one also has to consider the common side effects I listed above, but it’s the same situation with antithyroid medication. Many people don’t want to take methimazole and other types of antithyroid medication due to common side effects, and this also described me when I was diagnosed with Graves’ disease. But there are certain situations when the benefits of taking methimazole are greater than the potential risks, and while I’m not a big fan of this drug, I think it’s safe to say that a lot more people with hyperthyroidism would receive radioactive iodine and thyroid surgery if it wasn’t available. And the hope is that teprotumumab will help many people with severe cases of thyroid eye disease avoid surgery. I’ll add that from the trials side effects seem to be less common when compared to antithyroid medication, and not as severe.
Does Teprotumumab Address The Cause of Thyroid Eye Disease?
Most people reading this probably know that the answer to this question is clearly “no”. Teprotumumab doesn’t remove the triggers associated with the autoimmune component. On the other hand, neither does antithyroid medication, and there are some people who need to take methimazole or a different type of antithyroid medication for symptom management. The truth is that most people with thyroid eye disease won’t need to take teprotumumab, but some people with moderate to severe cases might want to consider it.
Because teprotumumab doesn’t address the cause of the problem some people might be hesitant to take it, which I understand. As I mentioned earlier, everything comes down to risks vs. benefits. When I was dealing with Graves’ disease I chose not to take methimazole and instead took the herb bugleweed. If bugleweed didn’t successfully lower my thyroid hormone levels I would have considered taking methimazole, and even though side effects are common with methimazole, if someone is trying to avoid radioactive iodine and thyroid surgery they might need to take antithyroid medication on a temporary basis. Similarly, while I can understand someone wanting to try taking a natural treatment approach for their thyroid eye disease condition, if it doesn’t help AND the eye symptoms are severe they might want to consider teprotumumab.
Where Can You Learn More About Teprotumumab?
For those who want to learn more about Teprotumumab I’ll include a few links below that you might want to check out.
https://www.ncbi.nlm.nih.gov/pubmed/31971679
https://www.fda.gov/news-events/press-announcements/fda-approves-first-treatment-thyroid-eye-disease
What natural treatment for TED do you support?
Jacquelyn, while I will commonly give natural agents that reduce inflammation and oxidative stress (i.e. high dose EPA and DHA, selenium, glutathione, etc.), my main goal is to try to find the triggers of the autoimmune component, which is responsible for TED.