dose any one here have graves disease
I was just told that I might have it and I want all the info I can get
I don’t trust some of the internet web site abot it I want to hear
frome real people that have it or know abot it and thanks


I’ve had Graves’ disease for nine months and Type 1 for 25 years.

Let me know if there’s any specific questions I can help answer. I’m still fairly new to Graves’, so am far from an expert, but am happy to share any knowledge or experiences that might be helpful.


can you plase tell me what semtems you had befor your dex and what meds did
they put you on


I think Graves’ came on very fast for me. I only had symptoms for about a month before I was diagnosed. I initially made an appointment with my GP after several weeks of not feeling well due to increasing symptoms, but then one night in the week before my appointment they got severe enough that I ended up going to emergency. The symptoms that caused me to go to emergency were my heart racing uncontrollably and muscle weakness and achiness. Other symptoms I’d been experiencing were insomnia, overheating, mood swings (irritibility, rage, inability to concentrate), upset stomach, shaky hands, irritated eyes, and fatigue/exhaustion.

At the hospital they monitored me closely, gave me IV fluids, and did a bunch of bloodwork (did not know what was going on initially), and my TSH came back so low that it was undetectable. They tested Free T3 and Free T4 and both were way above the normal range. The next day they also tested for TSH receptor antibodies (came back highly positive) and did an ultrasound of my thyroid (I think just to rule out other causes like tumours). They started me on propranolol overnight and Tapazole the next day.

I’m still taking Tapazole, but am now taking a very small dose of bisoprolol instead of larger doses of propranolol.


What information don’t you trust on websites, @shelly4?

If you do have Graves’, I hope you’re able to get confirmation and treatment soon.


Shelly, look at the Mayo Clinic website, they usually have outstanding information.



I was recently evaluated for it bc myself and other people kept noticing I have very large and pronounced thyroid cartilage in my neck… It looks like I swallowed a handful of nuts and bolts and they got stuck in my throat. That and I can’t seem to get my weight back up to where I like it no matter how much I eat.

My doc reviewed my history, particularly my weight trends poked and prodded my neck and said that’s just the cartilage and not the thyroid gland m itself, which he pointed out was actually much much lower in my neck than was my previous understanding, well below the area of which I was concerned regarding its appearance. Said The physical exam was normal, just with his fingers, and because my weight had been steady he wasn’t that worried about it but he’d do a couple labs (TSH and Free T4) to be sure and if they came back normal it would be the end of the concern, if abnormal he’d do an ultrasound on my way back through town a few days later. They came back normal thankfully.


When I had hyperthyroidism (20 years ago; now in remission and recently dx’d HYPO!)

I was experiencing a lot of what @Jen did:
Insomnia, emotional swings, heart racing palpitations (though my heart would burst out of my chest!), fatigue (from heart racing and insomnia), wildly hungry (eating anything and everything), and a weird eye symptom which caused me to look bug-eyed!

The emotions were so wild, I felt like it was first trimester pregnancy.

Those teamed up with the insomnia --and I would find myself, every night, up at 3 am, crying my eyes out to country music videos! And I was not a fan of country music!

I could not go on. Seeing an eye doctor, for the bug-eyed thing, that doctor recommended I go have my thyroid checked.

I did! Classic Graves’ disease: non existent TSH and free t4 off the charts.

Tapazole and meditation really helped.
I was in remission within 6-8 months.

But I GAINED a lot of weight. 50 lbs.
I never lost it: until I became diabetic T1.

Get your labs done. It may or may not be a quick fix for you, but it is treatable. And if it’s not Graves’, at least you rule that out and keep searching for answers :slight_smile:


thanks and I hope I do too
I just don’t know witch web sites to
trust bkus 1 says I can eat what ever I want
the other says onley eat surten foods
and most web site I think are eather fake or rong on things


Unfortunately, with autoimmune thyroid disease there is a HUGE amount of “natural cure” stuff out there. It’s everywhere, hard to avoid unless you stick to sites like the one suggested above. I’ve heard a lot about dietary restrictions, don’t eat wheat, don’t eat dairy, don’t eat sugar… Well, I was doing all three of those things (avoiding wheat and dairy due to allergies) before I was diagnosed and it didn’t prevent it nor make me go into a super fast remission like @LADA_lady, so I really take all of that with a grain of salt. I also read a lot about thyroid levels within the normal range being abnormal, but I don’t know if I trust that, either. I think ultimately you should listen to the guidance of your doctor and not worry about the rest, and if you continue feeling bad despite treatment, it might be something to look into.


I forgot about this one. Between the insomnia and hunger, in the weeks leading up to and following my diagnosis I used to wake up in the middle of the night with my stomach growling as if I had fasted all day. It was crazy!


Oh, @shelly4,
Listen to What @Jen says!
She says it better than I did!

@shelly4, your endocrinologist is the best place to start. If you only have a GP, get a specialist. The endo treats thyroid AND diabetes. And will know how these two interact.

Go get the labs and see the endo. That will steer you better to health than any website.

PS @Jen
The day after we shared we’d both gained weight while suffering from Graves’, I met another lady who had the same experience!!!


thanks for the info I sure will get to see 1 soon as we get
a new truck or car ours is broke down very bad


My grandfather had graves- he did the radioactive treatment to destroy the thyroid gland and then he was on synthroid for life. I have hashimotos and so does my father. I’m wondering now if I could have graves too, I’m not sure if that’s even possible, or if it’s just the hashimotos causing my symptoms. I have had some more hyper symptoms and weight loss, but digestive issues could explain the weight loss.


Most of the symptoms of Graves’ are actually symptoms of hyperthyroidism in general, so they are the same for people who have other causes of hyperthyroidism like thyroid nodules or cancer OR taking too high a dose of thyroid medication. So they are not really specific to Graves’, except the eye irritation/protruding thing is (it’s caused by the TSH receptor antibodies attacking the eyes for some reason). Since you are taking thyroid medication, maybe you are on too high of a dose? It would be easy enough to check your levels and see if you have hyperthyroidism. It seems a lot of people with autoimmune thyroid conditions swing between hypothyroidism and hyperthyroidism just from needing medications adjusted. My endocrinologist has already told me that at some point I may go hypothyroid and it will be a sign that my medication needs to be lowered.


I felt and looked like Marty Feldman
When I was hyperthyrodic


It’s crazy how many things it affects. Like hyperglycaemia, I’d never miss the symptoms again if I were to get them again, now that I know them! I find that still do seem to get the symptoms occasionally, even though TSH, Free T4, and Free T3 are normal, especially during periods when I’m stressed or sick.


I know about that Jen, I have had both symptoms of hyper and hypo on and off but I wonder now if I could also have Graves? I don’t have antibodies for that or at least I didn’t 3 years ago.

When I lie down to go to sleep I often have palpitations and can’t sleep- it also seems to happen with bg flipping around too but not all the time…

My levo dose is very low, only 25mcg because my bg went high at 50mcg, I don’t think I can go lower than that. Last test tsh was lower at 1.25 I think and t4 was the same at 1.2. The test before tsh was higher because I got up early for the test I think.

Isn’t it awful to swing around? I’m sure it makes bg management much harder too. I hope you feel better :-):smile_cat:


Why did they test your for Graves’ antibodies three years ago? Did you have hyperthyroidism then? I’ve heard of people who have Graves’ come and go out of remission before.

I’ve heard that some people with Graves’ disease also have Hashimoto’s antibodies (in fact I was tested for them, but never did get the results) but that it’s still considered Graves’ disease. So not sure if it’s possible to have both diseases at once. I think it would be impossible to get a diagnosis of Graves’ disease without hyperthyroidism and antibodies, since that’s the very definition of the disease (though I don’t know exact criteria, since I’m not a doctor). Probably best to ask your endocrinologist about it.

I often get the lying awake feeling my heart pounding unable to fall asleep, too. Taking a very low dose of beta blocker has helped a lot with that. My GP thinks it’s due to my thyroid, even though my thyroid levels are normal. I’ve also talked to people with hypothyroidism who say that they experience heart palpitations, so maybe it could be due to your Hashimoto’s. I’m wondering if mine may be due to my levels being a bit too low now—with those levels you quote, my TSH is higher than yours and my Free T4 is lower. Others have suggested my thyroid being too low might be why I’m having difficulty losing weight. But I’m not sure, since my levels are still squarely within the normal range. I’ll definitely be talking to my endocrinologist about it next time I see him!


Hi Shelly! I had been holistically treating my hyperthyroidism with some success but it took a while. I have followed suggestions by this site http://www.naturalendocrinesolutions.com/ and also the AutoImmune Solution book. I just found out that I don’t have Graves Disease which the experts suggest can be harder to treat. I have most of the classic symptoms. I feel what has helped the most is talking herbs: motherwart, buggleweed and lemon balm i get all three in a product called Thryrosoothe. I also have gone gluten free and made some other modifications in my diet, continue with yoga and trying to schedule down time and rest. There is probably more to my protocol but those are the big ones. My TSH is still barely there but my T3 and T4 have almost normalized. My doc wanted me to start on meds but I am not interested, if all else fails i will have to go the radioactive treatment route. But my point is we can be an integral part to our health and well being, traditional western docs don’t always see beyond the numbers and pills. Having faith that my body is restored like in the NOW has been huge, we must believe in our ability to heal. Of course modern medicine is essential and if my health was truly compromised i would move forward the more traditional way. Best of luck on your journey. Amy