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#1 Oct. 15, 2012 23:10:15

davidkang106
Registered: 2012-10-12
Posts: 12
Profile  

Graves?

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?



Edited davidkang106 (Oct. 16, 2012 16:17:47)

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#2 Oct. 16, 2012 09:44:57

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 2711
Profile  

Graves?

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!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 Oct. 16, 2012 12:49:40

currietm
From: Camas, WA
Registered: 2012-10-05
Posts: 17
Profile  

Graves?

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!

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#4 Oct. 16, 2012 13:11:27

adenure
Registered: 2012-03-22
Posts: 444
Profile  

Graves?

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.


Alexis

Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).

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#5 Oct. 16, 2012 16:16:22

davidkang106
Registered: 2012-10-12
Posts: 12
Profile  

Graves?

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.

Edited davidkang106 (Oct. 16, 2012 16:22:12)

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#6 Oct. 16, 2012 16:44:34

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 2711
Profile  

Graves?

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.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#7 Oct. 16, 2012 18:27:49

gatorgirly
Registered: 2010-02-23
Posts: 260
Profile  

Graves?

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.

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#8 Oct. 18, 2012 16:24:03

davidkang106
Registered: 2012-10-12
Posts: 12
Profile  

Graves?

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.

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#9 Oct. 18, 2012 17:05:12

adenure
Registered: 2012-03-22
Posts: 444
Profile  

Graves?

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.


Alexis

Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).

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#10 Oct. 19, 2012 08:02:29

mlb0603
Registered: 2012-10-15
Posts: 4
Profile  

Graves?

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.

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