Someone I love with all my heart has just been diagnosed with Graves Disease. Do any of you have experience with this? The treatment sounds potentially brutal and it could be a year or more before it results in calm and normality. I’m gutted. At the same time, I realize it could be MUCH worse. Got to keep it in perspective.
Would appreciate any insight, even if it includes hard truths.
Thanks.
If your loved one is starting with thyroid inhibiting pills, the hyperthyroidism can come under control within a month or so. Beta blockers can also be used to diminish the symptoms while the antithyroid medicine starts to work. Not brutal really.
I was diagnosed with Graves Disease 29 years ago. Was in my 20’s at the time was pretty overwhelmed with the disease and treatment. I immediately started taking oral antithyroid treatment and beta blockers. I eventually opted for the radioactive iodine treatment to kill my thyroid function. If I could do it over again I would opt for the thyroid removal surgery.
Once the Graves Disease is under control it is a very manageable disease. I’m a runner that won many races including marathons post Graves Disease diagnosis.
Be sure to have your loved one research all treatment options and potential side effects. This is something I did not do. Wishing you and your loved one all the best with the diagnosis.
I was diagnosed in my 20s. They obliterated my thyroid and I had some side effects for a few months. Thereafter, it’s really no big deal. I take synthroid and have my levels checked twice a year. For what it’s worth, it does NOT impact life expectancy. I’m in the life insurance business and people with Grave’s Disease can get the best availalbe rates, meaning they disease is pretty benign.
Thanks, guys. You have really helped.
My experience was different. After taking Methimazole for a little over a year, my thyroid rate went back to normal, so be sure and follow up with blood tests while taking the medication. That said, I was diagnosed with thyroid cancer 20 years later and had my thyroid removed. Taking levothyroxine every day has been easy for me.
My friend’s S was diagnosed when he was in pharmacy school. The disease had progressed farther than it would have if he had been home … his mom took one look at him when he came home for the holidays & immediately made a doctors appointment, because he looked awful. I don’t know the details of his treatment, but he was able to stay in school while being treated. He’s been doing fine since.
A Chinese student I had was diagnosed while in the US for school. She flew home to be evaluated by a doctor in China, who recommended surgery for her eyes. She ended up taking a year off for surgery & recovery. I don’t know the details, or if whatever surgery she had is something that would have been done in the states, but she was fine when she returned to school.
It’s probably irresponsible of me to say this, but I will, since everyone who ever intended to be Covid vaxxed and boosted has already done so, so it’s not as if I’m going to scare people away from the Covid vaccine. I’m wondering if the Covid vaccines and boosters (many people have received four doses in less than 18 months) triggered the development of autoimmune hyperthyroidism (Graves disease). I’ve asked a university-based academic endocrinologist if they are seeing more than usual patients who are presenting with autoimmune hyperthyroidism, and the response was that they couldn’t yet say. However, over-vaccination does have a history of being associated with autoimmune disease. For instance, too many, too frequent Td shots (tetanus which was always combined with diphtheria, now usually is combined with pertussis, too) is known to be associated with an increased incidence of development of ulcerative colitis, which is an autoimmune disease.
Many years ago, I knew a person whose crazy MD father had given his 4 kids a tetanus shot annually, when the booster schedule is every 10 years. Two of the four developed ulcerative colitis, when there had been no family history of it. I kept my mouth shut when the mother asked me why this had happened to her daughters. She thought it was somehow her fault, the result somehow of inadequate parenting. Nope.
Your student probably had Thyroid Eye Disease as well not all Graves patients have it. But I importantly forgot to mention to the original poster to have the recently diagnosed person schedule an appointment with an Opthalmologist that specializes in thyroid eye disease.
My Graves Disease is under control unfortunately my TED isn’t.
Although it might be possible, you don’t really need any wild explanation. Graves Disease is actually quite common.
As for how bad it can be, it really depends on whether or not one develops Thyroid Associated Orbitopathy (TAO). TAO can result in vision loss if it isn’t treated. Treatment can require surgery to create space around the eye, which results in double vision requiring muscle surgery. That process can be brutal.
If the person smokes, they should make an immediate effort to stop. That’s like pouring gas on a TAO fire.
Best of luck to them.
Are you an Opthalmologist? Currently, in the process trying to have my insurance cover the cost of Tepezza. I have have been down the road of considering the orbital decompression surgery but frankly it scared me.
My loved one actually had a recent Covid infection prior to experiencing symptoms that led to this diagnosis. So if I’m going to start pointing fingers, just as likely (if not more, given the fact that the last booster was many months prior to the infection) that the disease caused this than the vaccine.
“COVID-19 infection can cause Graves’ disease and thyrotoxicosis. The onset of this disease after SARS-CoV-2 does not depend on the presence of pre-existing thyroid pathology and requires the appointment of glucocortisteroids.”
The symptoms were only bilateral swollen extremities. Got a scare when a very high BNP result showed up on blood work (highly indicative of congestive heart failure). When echo showed perfectly normal heart, they went digging further and found grossly abnormal thyroid hormones. Finally, a thyroid scan was diagnostic for Graves.
No eye symptoms, so hopefully that will be a non-issue. Just worried about effects of treatment, both physically and emotionally. When you read the list of potential side effects, it’s scary and disturbing.
Hearing these good stories is starting to ease my anxiety.
ETA: lifelong non-smoker, thank goodness.
I don’t have Graves, but I’m hypothyroid an have been for 30 years, After your loved one gets the hyperthyroid taken care of the hypo is usually no big deal, just one very small pill a day.
Hi, do you have a citation for the link between frequent Tetanus vaccination and Ulcerative Colitis? I did a search and the only paper I could find was a 1968 opinion paper where a doctor worried there could be a link, but presented no data. On the flip side, there were many papers finding no link between vaccinations and UC (although admittedly none looked at over-vaccination i.e. vaccination above and beyond the recommended schedule.)
Thanks in advance!
I’m a medical optometrist. I’ve seen many cases, including euthyroid TAO. You certainly don’t want to lose field, but I’d use every other option at my disposal before I was decompressed. That said, if it’s the only option, compressive optic neuropathy can cause permanent vision loss. Do it if you have to. Hang in there. No fun!
@Nrdsb4 - no personal experience other than dealing with a cat with an overactive thyroid, just cyberhugs.
/The cat sprung back to life after methimazole and then I-131 and is doing great BTW.
This was nearly 30 years ago that I saw the paper, but I recall that it wasn’t speculation - it was a report or a study of an association between overly frequent Td vaccination and the development of immune bowel disease, definitely UC, don’t remember if Crohn’s also. And of course it was the only instance I’ve ever seen where the children had received Td annually, all through childhood. Father was a specialist who had no particular training in pediatrics or immunology, but did have a huge ego, and somehow decided that HIS children were special, because they had a backyard barn with horses, so he decided that they were at higher risk of tetanus. So he stole Td shots from the ER and lined his kids up every summer for a Td shot, until he died when the oldest was 19. Two of the four kids developed UC.
It’s early days for seeing whether having had three or four mRNA covid vaccines over the course of 18 months will have led to a higher incidence of any autoimmune diseases. For many of us, it was just a no-brainer, since it appeared at the time that the risk of death or severe illness from Covid was higher than any possible side effect of the vaccine. Now, what with Paxlovid and early at-home testing, I’m hesitant to get boosters of the Covid vaccine. I’m not urging my kids to get the newer booster, although one will have to, for their college, before spring semester.
Totally possible! As I’ve said, it’s always a risk/benefit ratio consideration. And we already know that mild cases of Covid still led to long Covid inflammatory symptoms. But the decision about initial vaccination against Covid is moot - pretty much anyone who was going to, already has. The question now is the risk/benefit ratio of additional boosters, for young people with robust immune systems (that might overreact and cause Graves), the availablility of Paxlovid for virtually anyone, and the general low severity of Covid now, in those who were vaccinated, boosted, and Paxlovided, I really feel I cannot recommend the new booster for the young and healthy. I’m not recommending against it, either. I know I’m telling my kids to hold off, especially since two of the three have already had Covid recently. I do know a young woman who developed Graves, probably 2 weeks after a prior mRNA booster dose. But of course that doesn’t mean the booster caused it.
Interestingly, the paper from 1968 mentioned the apparently common practice at the time of giving children a tetanus booster every year at summer camp. And yet Inflammatory Bowel Disease rates (and other autoimmune rates) were lower then.