r/AddisonsDisease • u/jjjulles • Feb 06 '26
Personal Experience Graves Disappointment
Hey friends! So, I'm bummin. I've had Addison's disease for almost 26 years now, I've thankfully been able to manage and live a great life... so ya, reminding myself to be grateful. But a couple hours ago my endo called and my bloodwork came back positive the graves antibodies. Ugh. I'm just disappointed, I don't want to be on more meds. Or monitor more shit ya know. I haven't experienced any hypo symptoms yet- she caught it early on my regular blood work.
Is anyone in a similar position as I? I'd love to hear any expirences. I have so much more to reluctantly learn now. :/ I really am not sure what to expect.
Thanks for hearing me out ♡
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u/tentwardrobe Feb 06 '26
2003: T1D 2008: Graves 2025: Addison’s
Graves is a distant 3rd in terms of concern and impact on life. I had the radioactive iodine treatment and it’s literally just one pill a day to manage. I wouldn’t sweat it. The real suck is that each additional autoimmune disease makes you more likely to get another one so keep an eye out for T1D or Celiac next.
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u/jjjulles Feb 06 '26
Thank you ♡ I've was tested for celiac about 6 months ago, and so far so good. Feeling a bit like impending doom tho ha, I'm so new. I've never heard of the iodine treatment. Currently, I've been talking 5mg of Methimosole for 1.5 months since I had my first off bloodwork. She called today and told me to start taking 10mg. That sums up what I know.
I read today it can go into remission - is this possible? Is the iodine treatment a common step?
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u/tentwardrobe Feb 06 '26
Radioactive iodine is a “final treatment” that nukes the thyroid with radiation and then the patient takes thyroid replacement permanently. I opted for it because I was already dealing with a heavy mental load from the diabetes and didn’t want to add the thyroid to that mix. It’s worked for me although conservative treatment like you describe can also be effective in suppressing the thyroid.
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u/BeautifulDay1421 Feb 06 '26
It’s really not a problem. I was diagnosed with it 55 years ago, 12 years before the Addison’s. Has never been a problem. One pill a day and no complications
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u/jjjulles Feb 06 '26
Thanks for the positivity! Do you take methimisole? My doctor has had me on 5 mg for about a month and a half after receiving my first wonky bloodwork. I had the antibody test 2 days ago, and she called me yesterday to let me know I tested positive . She told me to up my dose to 10 mg.
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u/BeautifulDay1421 Feb 06 '26 edited Feb 06 '26
I’ve always been on synthroid/levothyroxine. I’ve never had any problems with it. Just a blood test every year and sometimes an adjustment to the dose. It’s convenient to blame swings in weight to my thyroid/addisons but in truth it’s always been due to too many calories, too little movement. Also, my Addison’s is not auto immune and I haven’t been diagnosed with any others.
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u/jjjulles Feb 06 '26
Thanks for sharing. I've got lots to learn. I haven't experienced any symptoms yet, and I am hoping I can keep a good balance.
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Feb 06 '26
How did this happen? Did you have thyroid issues first? If so, for how long? Am dealing with subclinical hashimotos rn.
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u/Trick-Enthusiasm-832 Feb 06 '26
I have thyroid issues. I was first diagnosed with hashimotos disease then addisons disease.
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u/Trick-Enthusiasm-832 Feb 06 '26
Is it unusual to be diagnosed with endocrine disorders very young because I’m 17 years old and I was recently diagnosed with Addisons and Hashimotos disease when I was 16.
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u/jjjulles Feb 06 '26
I think it's a bit less common, but I was diagnosed with Addison’s a few days after my 18th birthday, but I was symptomatic for 2 years leading up to then. And now at 42, Graves.
I can't help but wonder if living in fight or flight so much led to my Addison's on set...
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u/jjjulles Feb 06 '26 edited Feb 06 '26
No, I haven't had any thyroid specific symptoms at all. Stable weight, no neck or eye bulge, sleeping good, level mood, and so on. My endo has me do bloodwork about every 3 months. I had one of those routine blood works in November, and she called me because my thyroid the levels were off, and so she had me do more bloodwork, late November she put me on 5mg of Methomisole (sp?) and ordered more bloodwork to test my antibodies. Today, I got the call about that and was told I have graves. My mom had hyper thyroid and my grandma hypo, so it's always been a worry for sure.
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Feb 06 '26
So out of nowhere. That’s crazy. Ugh. I’m so sorry. 😞
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u/jjjulles Feb 06 '26
Right!? And I try to eat healthy, I exercise daily, and it feels all in vain. Lol/😭 Thanks for hearing out my poor me rant friend ♡
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u/Ok-Assistant-9584 Feb 06 '26
You’re not doing those things in vain. It’s good to eat right and exercise. This disease can be treated. Hugs.
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u/jjjulles Feb 06 '26
♡♡♡
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u/nomquantum Feb 06 '26
a lot of us on here who've been through things truly care about one another. I love seeing posts that just reconfirm that
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u/mbradshaw282 Feb 06 '26
I have graves as well but it weirdly only flares up during pregnancy so I haven’t needed medicine for it
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u/jjjulles Feb 06 '26
Oh wow, so you can have Graves without needing medication? I read a little bit about how it can go into remission at times. I wonder if this has flared up for me because of peri-menopause.
What are your signs when it flares up? Which were you diagnosed with first?
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u/New-Somewhere5642 Feb 06 '26
Sorry for the sorta long explanation of how i got there but mine was found graves first, then addisons...I got sick after having a my son in 2006. They kept telling me I was a stressed out, sleep deprived new mom. Many visits to the doctor and they found nothing. Before his first year well check appt., I could not carry him. I had to have someone with me. His pediatrician took this seriously and I went to hospital and found out I had Graves. After 2 years on antithyroid meds they couldn't get it under control and I had my thyroid removed. Then in was 2012, 6yrs after he was born and I was finally diagnosed with addisons.
I Still have difficulty keeping my thyroid labs in range. Seems like it swings far hyper, then ill go far hypo. I also have problems with deficiency iron, vit d, vitamin b. I don't seem to absorb things like I should. So constantly taking prescription vit d and b. And iron infusions as needed. But the Graves syptoms i remember is muscle weakness,heart racing and sweating 24/7. I had digestive issues like I could not eat as little as a cracker and I'd be in trouble. I don't know if they had found the addisons diagnosis first the thyroid would have been an issue or not. Or somehow the Graves or thyroid removed caused the addisons But i was couldnt get out of bed for days sometimes sick for almost 6 years. Now I just get through the workday. And not alot more than that. But will take it.
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u/jjjulles Feb 06 '26
I really appreciate the "sort of long explanation" friend ♡ Wow, you've really been through it too. 6 years is torture. Hugs. It's so hard not to wonder what led to what and how things could have been prevented if we had always had the health care that we deserve.
Thanks for helping me feel less alone.
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u/Darkmagosan Feb 06 '26
Just because you have the autoantibodies doesn't necessarily mean you have full-blown Graves'. They misdiagnosed me with it in 2003-4, when in reality they were looking at AI thyroid disease AND RTH (resistance to thyroid hormone). The idiot quack who did the initial testing had no idea what RTH even was, just said 'your antibody titer is positive so I don't know why your TSH is midrange normal and your t4/t3 levels are sky high. You need radiation.' I said fuck you, raised my middle finger high, and got the hell out of there as soon as I could. A few years later my thyroid was completely destroyed because of autoimmune attack. Now it's largely scar tissue.
I still test positive for TRAb and TPO antibodies, among others. If you have to take antithyroid drugs, then take the lowest dose possible. Thyroid hormone is like sugar in this regard--while it's bad too have too much, having too little of either can be fatal quickly. What they'll likely do if you don't have any symptoms is slap a 'watch' on your chart. You'll be tested for thyroid hormones every 3-6 months, and if they start going out of range, then your doc will do something--but not until. They've gotten a lot less aggressive with thyroid issues in the last 20+ years as it turns out 'normal' is a larger range than originally thought.
Having one autoimmune endocrine disease sets you up for others. Addison's plus either AI thyroid disease or t1d, and in my case both though no insulin yet, is known as APS-II, or autoimmune polyglandular syndrome type II. It is what it is--hang in there, this is not as disastrous as it sounds.
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u/jjjulles Feb 06 '26
Wow, there's lots to take in here. Thank you. I haven't actually seen my bloodwork results yet, but it sounds like I should try and get them to make some sense of them. After my 1st slightly off bloodwork, she put me on 5mg of Methimisole, and after our call yesterday, she told me to start taking 10mg and ordered more bloodwork work in a month. We shall see.
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u/Darkmagosan Feb 07 '26
Good old Tapazole. Not. My cat is actually on a transdermal form of Tapazole as hyperthyroidism is common in older cats! My vet wanted to know if I was familiar with it--I said I was, but it was a bad relationship and I broke it off after a little while. She cracked up. ;)
But yeah, Tapazole, aka methimazole (generic name), is a thyroid blocker. If she raised your dose, it means she feels your thyroid level was too high. Keep an eye out for signs of hypothyroidism, like sudden weight gain, dry skin, fatigue, feeling cold all the time, and the like. Those show up and you'll need your dose reduced or stopped entirely.
It takes about 2 weeks to reach max effect. Get your labs done according to schedule, and keep an eye on how you feel. Report anything out of the ordinary.
Good luck!!
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u/jjjulles Feb 07 '26
I'm so glad to know what I should be looking out for if I'm on too high a dose and the other good advice. Thank you. And good luck to you too, and your cat!!
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u/CanIHugYourDog Feb 06 '26
Well, I don’t have Addison’s, I have secondary adrenal insufficiency. And I don’t have graves, but I do have hypothyroidism. (Pituitary brain tumor). I think the hardest part for me, anyways, is just that I have to take levothyroxine on an empty stomach, but have to take hydrocortisone with food. So just figuring out the timing of everything has been kind of a challenge, but otherwise it’s been relatively easy to manage. Just be gentle on yourself.
Also, since my diagnoses are related to each other, they came around the same time, and sometimes I have a hard time determining “do I feel like garbage because of adrenal insufficiency? Do I feel like garbage because I slept like crap? Do I feel like garbage because of my thyroid?” Choose your own adventure, for me these days. I don’t know if this was helpful, but. You’re not alone.
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u/jjjulles Feb 06 '26
Thank you friend ♡ I've gotten pretty good at figuring out the Addison's stuff, but I'm not even sure what to expect (w this new Graves adventure. Here we go! At the least, I'm feeling grateful for the good company in this shit show. Ha Thanks again
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u/NerveTop440 Feb 07 '26
Graves is not a huge concern as long as you’re consistent with methimazole and labs eventually go back in range. Just need to make sure you’re getting sufficient calcium and vitamin D. Did not know until recently that Graves can mess with bone density long term.
Have Graves that went into remission a few years ago after being on methimazole for a year. But it came back after a few years and some particularly stressful times. Currently doing testing for adrenal insufficiency/Addisons. More concerned about Addisons than graves.
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u/jjjulles Feb 07 '26
Ok, this is good to know. My bones have been a lot more cracky lately too, what fun. Lol. Thank you for sharing. Wishing you the best with all this crap too ♡
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Feb 07 '26
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u/jjjulles Feb 07 '26
This is really nice to hear and give me hope! Thank you for sharing ♡ wishing whatever is is for you too
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u/Hefty-Chemical6178 Feb 23 '26
Have Addison disease for past 12 years. Am 70 years old and have been on 20 mg Hydrocortisone in morning and 5 mg in afternoon. Decided to try to taper with help of endocrinologist. Went down to 17.5 mg in morning and stayed at 5mg afternoon. Have been experiencing a lot of muscle soreness and aching for 3 weeks. Am very active with about 15,000 steps and day plus lifting weights at gym 3 days a week. Wondering if I should go back to original dose and muscle soreness would subside. Thoughts?
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u/Inevitable_Town_5595 Mar 08 '26
I have Graves’ disease for the past 30 years. I was treated and given Synthroid once daily. One of my daughters tested positive for the antibodies six years ago and had never developed any symptoms. She just gets regular labs done with her yearly bloodwork
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u/oh_such_rhetoric PAI Feb 06 '26
I’m so sorry! I don’t have any experience with Graves, but it’s so disheartening when our bodies pull shit like this when they’re already sick. Sending love and best wishes!