[davidkang106]

#1059443

I suspect I have Graves disease. Hopefully, that way I can get it treated and get on with my life.

TSH 1.29 Range .40-4.50
FT4 1.9 Range .8-1.8
FT3 3.6 Range 2.3-4.2

Vitamin D Deficiency

Symptoms: Constant extreme surges of adrenaline in bloodstream (hyperactivity), insomnia characterized by restlessness due to adrenaline and muscle aches,
shortness of breath with exertion , extreme fatigue, rage, emotionless face, shaky hands, carpal tunnel, extreme brain fogginess and cognitive
impairment, delirium, difficulty swallowing, intolerance to moderate to high exercise due to dizziness and high heart rate and faintness, food intolerance,
tension headaches and sore/achy eyes, inability to sit still, physical anxiety and panic symptoms, jaw clenching and urge to clench fists and toes,
blank facial expression, sensitivity to stress, resting heart rate of 90 bpm, depression, chest pains, angina, hypoglycemia, confusion, constant dizziness and vertigo, and
disturbing psychological symptoms like paranoia, feelings of unreality which never goes away.

Doctor says, “…Your levels are normal take some anti-depressants and see a psychiatrist.”

Bro.. I’m not depressed, these SYMPTOMS are making me depressed.

I requested TSI or anti-bodies blood test. He said it wasn’t necessary.

I purchased a TSI online gonna do that this week.

I know a diagnosis’ aren’t allowed but what do you think?

If I test negative for Graves I’m pretty scared. Every single symptom of hyperthyroidism + the eye symptoms?

Where to do from there?

[Kimberly]

#1174711

Hello – We aren’t doctors here and can’t make a diagnosis for you, but *clearly* you are experiencing significant symptoms that are affecting your quality of life.

If your current doctor won’t help you find the cause for these symptoms, perhaps a second opinion would be helpful.

We do hear from patients who experience hyperthyroid symptoms as their levels are swinging upward — but at this point, it’s really important for you to get a definitive diagnosis, as this will affect your treatment options.

The TSI test should help shed some light as to what is going on. However, the problem is that there is currently no cure for the autoimmune component of Graves’. Instead, the treatment options all focus on getting hyperthyroidism under control. So even if you do end up with a diagnosis of Graves’, your doctor will likely not initiate treatment unless you are clearly hyperthyroid.

If your heart rate is dangerously high, there are specific drugs that can help with this — but again, you would want to get a definitive diagnosis first.

Take care!

[currietm]

#1174712

I already take anti-depressants and 3 months ago after going to the doc all the time he just kept upping my meds like I was crazy. After the 3rd time, I changed docs. That doc new ‘immediately’ my thyroid was out of wack and sent me to an endo. I am now on my way to feeling better. If your levels show hyper/graves I would recommend a second opinion. I told myself, if this new doc says the same thing then I MUST be crazy and a shrink appt was my next stop……. but it was NOT in my head!

[adenure]

#1174713

Definitely a 2nd opinion. Another doctor might also order a radioactive uptake scan which can confirm Graves.

My numbers reflected hyperthyroidism and I tested positive for antibodies & had a percentage above normal for the uptake scan. I understand the symptoms you’re feeling. I had terrible anxiety and was scared to be by myself. I’d start to have a minor panic attack every time I was alone (even in the shower if my husband was in the house! I made him sit on the toilet seat so I could shower without panicking!) Geez!!! I never had issues like that before getting sick. I had minor tremors, elevated heart rate- my worst being 120 when walking down the hall. Initially I was told by one “lovely” doctor that I needed to relax, he sent me home with a paper bag (to blow into when I was anxious) and wanted to give me xanax. Yeah…. no.

Fortunately, I did get a doctor who did blood work and figured it out so I was very, very fortunate to only have been really sick for 2 months. Then, I got on the path to being well with ATD’s and then eventually surgery 4 months ago. I now shower on my own- , take care of my 4 boys, homeschool like I did before I was sick and am able to enjoy life again and feel normal most of the time. Sometimes I feel a little off, but it’s probably from adjusting to life without a thyroid and being fairly new to Synthroid and all that. Plus, really, it was a traumatic experience (as odd as that sounds) to go through all the weird emotions and symptoms of being hyper- I think part of me has a little residual of that every once in awhile- weird. But, like I said, now, that all is back to normal pretty much, I’m doing WAY, WAY better and feel pretty good most of the time.

Good luck to you and let us know how it all goes.

[davidkang106]

#1174714

What are the chances of my TSI test coming back normal if I do have Graves? I used the last of my money to order this test and took it today. If it comes back negative, my life is going to become a living nightmare. My entire family thinks I’m delusional because I was misdiagnosed with anxiety/depression/bipolar which I KNOW I’m not but my parents think I’m insane for challenging doctors and psychiatrist when thyroid patients are always misdiagnosed. My parents are constantly yelling at me and accusing me of being weak and paranoid.

Guys… I’m scared and desperate.. my symptoms are getting severe and I don’t have any family support. If this goes untreated I will be put on anti-depressants and bi-polar medication, and kicked out of both my parents house.

The emotional, cognitive effects are getting extreme as they can be and I can’t support myself. I can’t even function at ALL.

Ugh.

[Kimberly]

#1174710

Hello – The TSI test is very, very, accurate — but not 100%.

Also, keep in mind that while Graves’ is the most common cause of hyperthyroidism, other issues can affect thyroid function as well, including overactive thyroid nodules and thyroiditis.

If you’d like to read more, check out the “Treatment Options” thread in the announcements section at the top of the forum. There is a guidance document from the American Thyroid Association and American Association of Clinical Endocrinologists that goes into a lot of detail on causes and treatment options for hyperthyroidism.

At this point, it would also be worth continuing to pursue any other possible causes. You know your body and you know that something is off — so please continue to be persistent until you find a doctor who will work with you to put the puzzle pieces together.

[gatorgirly]

#1174715

Are you near any safety net hospitals? These are hospitals that offer charity care, usually in the ER, for people who cannot pay but need immediate treatment. If you go in the early morning, there is usually an endocrinologist there doing rounds. Or you might find an ER physician who truly understands your symptoms and is willing to run the appropriate tests to either rule out or confirm thyroid issues. Just make sure you’re vocal about your financial situation.

[davidkang106]

#1174716

Guys. I’m really scared now. My TSI came back negative but I KNOW I have Graves’. My eyes are starting to bulge, my eyelids won’t open unless I try really hard, there’s a constant pressure in my eyes, and all the hyperthyroid symptoms have been happening for 6 months and getting worse and I never suspected Graves or hyperthyroidism until a couple weeks ago so I know it’s not anxiety. It’s just slowly getting worse.

But what are the chances I am one of those rare cases that TSI test couldn’t confirm it? Ugh.

I hope you guys believe me on this form. The fact that people with these diseases don’t receive sympathy is definitely the worst part.

[adenure]

#1174717

My endocrinologist told me the only way to know with 100% certainty whether you have Graves is to have a radioactive uptake scan. I’d go with that I guess.

[mlb0603]

#1174718

Hello all. I am new to this post and figured I would start here. I have been experiencing all of these symptoms for about 16 years now (always suspected for Lupus). My GYN doctor was the first to bring the thyroid to my attention in 2001. On a routine annual he said it felt extremely large. He sent me down for thyroid blood work, which of course, came back normal. A year later when I found out I was pregnant, same thing. Blood work still normal. He sent me to a Endo Dr, which couldn’t do anything beyond blood work because I was pregnant. I never followed back up with the Endo after my daughter was born because he and my PC doc always said my blood work was in normal ranges and I was just one of those people with a large thyroid. All the dr’s (which have been A LOT) I have seen since 2000 for the symptoms I have been experiencing have always thought it was Lupus. My Ana’s have always been off but the other blood work they do along with this didn’t show anything to be given a diagnosis. In ’01 a rhematologist said it was Fibromyalgia. Anyway to make a long story short, I was finally diagnosed with discoid lupus after a biopsy of the rash I get on my arms. Then last July I had multiple blood test done and was confirmed to have Systematic Lupus. In these blood test they also did thyroid panels. Still normal!! My PC doc I have now finally sent me down for an ultra sound of my thyroid. When I went to see my Cardio Dr (for heart palpitations) a month later, he reviewed the ultra sound and told me I needed to get in to see an Endo asap. (I see all my Dr’s at one hospital) He got me an appointment 2 days later. The Endo came in, listened to all my symptoms, reviewed all my medical records from 2000, looked at the ultra sound and my last thyroid panel and said “you have graves disease.” I was floored!! I didn’t know what to say, what questions to ask, or anything. He said he was going to set up the RAI uptake test to confirm because only one of my thyroid panels is off a little. Anyway to get to the point of commenting on this post is, he said that you can have graves disease but it may not show up with just blood work alone. He said that if you are not in an active state when the blood is drawn then the panels can be in normal range. Just like others have said on here, “I thought I was going crazy.” I go next week for 2 days for the uptake test. My Endo wants me to do the RAI treatment to kill the thyroid cells. He said it will stop the Hyper state, but not cure the graves disease. I have to say I am really scared and have mixed reviews on what to do. I have read a lot on this the last few weeks and still don’t know what to do. I have 3 autoimmune disorders and don’t want to be medicated the rest of my life. I am only 36. My mother had systematic lupus and died of stomach cancer at the age of 51. Well I could go on, but I’ll stop rambling for now. I wish you the best of luck at getting a proper diagnoses. Don’t stop until you find a Dr you can trust.

[Kimberly]

#1174719

@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.

[davidkang106]

#1174720

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

[davidkang106]

#1174721

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.

[Teri_Odegaard]

#1174723

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.

[cmac]

#1174724

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.

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