Sick feeling
Recently had my first treatment, about a week afterwards starting feeling very dizzy and nauseated with NO energy, extremely tired all the time. Just wandering how long to expect these effects, really nervous about my next treatment.
, the side effects of any new treatment can be so hard to contend with and I hear how nervous this is making you! Are you doing the Tepezza treatments or some other type of treatment? If it is Tepezza, I am confident if other members of our community have experience with this to share, they will, but in the meantime here is an article we have on Tepezza that you might find hepful: https://thyroideyedisease.net/treatment/tepezza. I also know our patient leader has had experience with this and hope she can chime in! All the best, Sam S. (ThyroidEyeDisease.net, team member). Am I understanding correctly that you are referring to your first of the eight Tepezza Infusions? If so, I can certainly relate to you. I had the infusions in early 2020 when this treatment was new. The good news is that this treatment really helped my TED symptoms. Because of that, I was willing to tolerate the side effects for five months to get on the other side of thyroid eye disease! But for me it was difficult. I did have most of the side effects, like nausea, diarrhea, tiredness, vertigo, headaches, thinning hair, dry skin, loss of taste and muscle spasms. For me these side effects lasted throughout the five months. The vertigo and muscle spasms took almost a year to completely go away although much less troublesome. It is difficult to give you a specific answer about what to expect as you go forward with the infusions because everyone reacts differently; your body may adjust. I wish I could be more specific. I have talked to many TED patients who have been treated with Tepezza and more than half of them have told me they actually had no side effects. You do have one thing in your favor and that is that more is known about Tepezza. Specifically the side effect of hearing loss. You probably had a hearing test to get a baseline before you started your treatment. That is good. I did not and am left with some hearing loss. No need to be startled because you will be followed closely to prevent the damage. I am sharing this so you know what to be aware of. After the third or fourth infusion I started dealing with an annoying plugged and full feeling in my right ear. I did not equate it to what would eventually be a hearing loss as these symptoms were never listed. If you have this feeling in your ears and/or unusual tinnitus, it is important that you let your doctor know. I know you probably have already had a challenging journey with TED and are anxious to get beyond that. Tepezza is amazing in many ways! It works. It is just important to work closely with your doctor to monitor your side effects. I truly wish you less side effects as time goes on. Roxann K. Moderator Thank you, that was very helpful. IAM experiencing alot of ringing in my ears as well.
the ringing in your ears must be frustrating! Have you had the chance to discuss that with your doctor? If not, as Roxann suggested, it is a good idea to keep them in the loop on any symptoms or side effects you show so they can monitor them! All the best, Sam S. (ThyroidEyeDisease.net, team member). The ringing in your ears is also a sign of vestibular damage, as my ENT has explained. I also have chronic tinnitus. Mine sounds more like the sound of an electrical wire...very high pitched. I hear it always but at times can live around it more than others. The tinnitus is another symptom you must be sure to tell your doctor. It has been explained to me that the hearing problems and tinnitus can be temporary. I am two years out so mine is permanent. I am glad you brought this new symptom up and know to bring it to your doctor's attention. I truly hope your hearing problems are temporary. Roxann K. Moderator
