@mlb0603 - Thank you for sharing your story! Your experience helps to illustrate how persistent we have to be in getting a proper diagnosis.

@davidkang106 - Remember that we are fellow patients here, not doctors. In general, though, the TSI test is a measure of how much stimulation the thyroid gland is receiving from the antibodies in our system. A result above the “normal” range indicates that there is enough antibody activity going on to make us hypERthyroid. The term “normal” in this test is a little confusing, though, because someone without Graves’ should have a reading well below what the lab calls “normal”. Personally, when I was diagnosed, my TSI was below the “normal” cutoff, but a few months later, it had more than tripled.

Bottom line, you are experiencing very real symptoms that are significantly affecting your quality of life. I would encourage you to read mlb0603's story – and continue to be persistent until you find a doctor who will listen to your symptoms, interpret your labs, and help you find a root cause for these issues.

Thank you so much all. I really appreciate all the feedback, information, and support… truly. I'll keep everyone posted.

Endocrinologist said that I have no chance of having Graves'. Of course, from the moment he walked in the door he didn't really seem to listen to me at all as well. This blows my mind. Wouldn't having TSI in my blood be indicative that I would at least have SOME chance? Especially when I suspected Graves' before testing the TSI.. I REALLY don't think it is all a big coincidence. I admit that saying that I have no chance was a very bold statement and really made me feel like a hypochondriac.

But one thing is for certain, the symptoms are very real and there is no way that anxiety and stress are causing very extreme physical, mental, and cognitive symptoms very specific to thyroid conditions. And having TSI in my blood although it is not passed the 139 mark is NOT a coincidence. As well as the eye symptoms and slight protrusion of my eyes. The doctor took a quick look at my eyes and said “they look fine.” ….really? As if he knew what my eyes have looked like my entire life.

I am still not convinced and am still motivated to find someone who is willing to actually listen and take my symptoms seriously. I found this wonderful website of a place that is near me and am really hoping to find some answers there.

I also decided to invest in a thyrogluboluin and thyroid peroxidase blood test to rule out the possibility that I may be experiencing a hyperthyroid phase of Hashimitos. HEY it's a possibility right? Not likely but if doctors won't listen I need to take initiative myself. I don't want to suffer for years of my life only to find out I've been overlooked later.

Thanks again for listening and the support.

I was diagnosed with Graves' Disease with Hyperthyroidism in June 2010. Yes, the symptoms are very real. I went through a round of specialist, endocrine, neurology twice, and hearing . It was confirmed that I have Graves' with the endocronologist; however, for my symptoms I was suppose to see my regular provider. I have had 6 MRI's since my diagnosis. There is no trauma or tumors associated with my brain. This year I went to a hearing specialist. I have hearing in the “normal” range – so why do I continuesly have this high pitched buzzing sound in my ears – I don't know.

I have been looking for answers since I was diagnosed, haven't found any. When I was first diagnosed I had all the symptoms of a stroke, but on the right side. No problems with my brain. At the ER checking my thyroid levels was the last thing they did – therefore diagnosed. I was taking around 8 5mg of methamazole at least 5 weeks daily before my levels started to go down. In the first month I couldn't think, remember, or concentrate worth a darn. Driving was out. I was walking with a cane and when it came to talking that was so difficult that I would get frustrated because the words were there in my head, but the sound came out stuttering and slow.

My provider let me have access to a web site for physicians as a guest for 30 days. This web site had a lot of information on Graves' and I printed it all. Here's one for you – the two least common symptoms of Graves' are vertigo and tennetis; but those were the two my provider used when I was diagnosed. He told me that I might have a “sonodoform disorder”. I did a short question/answer thing and I answered more no's then yes', which discounted that one.

When I was doing the research I found that Graves' can be onset by stress as a factor. It can also cause neurological problems. What I would like to know is – if the information is there for the medical profession why do I know more than they do?

My provider does listen to me and has tried very hard to help me find answers. I am still looking and so is he, but with no income right now I am at a stand still.

Interesting info about tinnitus. I've had it for about 2 years. I just ignore it, I think that's the normal “treatment” for tinnitus. Unless I think about it, it doesn't bother me, and I don't think it's constant. I have had GD for 6 months, although I think it is in remission now. I guess I'm lucky that I can pretty much put the tinnitus out of my mind, I'm sure not everyone is able to do that. I never thought it was related to GD though, and I'm not sure it is in my case. Good luck.

Radio active uptake scan to prove Graves? My doctor just said I had it due to my symptoms and levels. The surgeon said he is going to perform this test before surgery along with an ultrasound so he knows what he's looking at before surgery.

The uptake scan is SOP for diagnosing or confirming a GD diagnosis. It's just like an MRI, except you take a radioactive pill the day before the scan, then you return in 24 hours and have the scan. Takes about 1/2 hour, not constant, different angles are done with waits between them. Some places have you take the pill early in the day and hang around for 4 hours, and then do the scan same day. The cost here in NE was about 1100, and another 120 for the radiologist to read it. I got a discount because I am self insured and a self payer. Your doc will get the results soon in a day or two. The radiologist will describe the thyroid, its shape, characteristics. Most importantly, whether or not the test suggests cancer or just a benign enlargement

My advise—-find another Endo.

I have had years of going from Dr to Dr to always hear, “we can't find anything, you are fine, change your diet and exercise.” I have had my thyroid levels checked every 6 months for the last 12 years and they ALWAYS come back normal. I went for the RAI uptake scan last Wed., 10/24, I have Graves. The only way they found this was because I kept pushing and pushing until more was done. Don't take no for an answer.

@davidkang106 - All I can tell you is to keep being persistent until you find a doctor who will listen to you…BUT also make sure that you are dealing with someone who is board certified in endocrinology. I removed the link above, as our forum's policy is to only post links from established organizations (American Thyroid Association, National Institutes of Health, etc.) and from well-established, peer-reviewed journals.

I am not familiar with the doctor you mentioned, but there was a huge scandal a year or so ago, where a chiropractor from the Denver area was pretending to be an endocrinologist and charging patients literally thousands of dollars for treatment. Not only that, but he put out a video showing other chiropractors how they could make boatloads of money by preying on thyroid patients! (As I recall, his quote was something like, “It's like shooting fish in a barrel”).

So please keep fighting until you can find some answers…but also be very careful who you put your trust in. And be very wary if you find a doctor who charges ridiculous fees and/or wants you to sign a contract for a specific number of visits.

As for the RAIU uptake & scan, yes, this can be used to differentiate the various causes of hyperthyroidism: Graves' vs. overactive thyroid nodules vs. thyroiditis. But since your levels are currently normal as opposed to hyperthyroid, I'm not sure how valuable this information would be.

Take care – and keep us posted!