# Confused- diagnosed with Graves but normal labs????



## jezebel423 (Oct 16, 2012)

Hi All,

About a year ago things were going quite badly for me (hair loss, heat sensitivity, insomnia, weight loss, etc. etc.) I went to two endocrinologists and was told I had Graves disease after much testing. Here are some labs from that period of time.

Thyroid Stim Immunoglobulin	686 %	0-139 H
Thyroid Peroxidase (TPO) Ab	103 IU/mL	0-34 H 
Antithyroglobulin Ab	51 IU/mL 0-40 H 
TSH 0.018 uIU/mL .450-4.500 L 
T4,Free(Direct) 2.51 ng/dL 0.82-1.77 H
Triiodothyronine,Free,Serum	7.7 pg/mL	2.0-4.4 H

I took Tapazole for a few months but ended up hypo so have been off my meds since February. However all my tests have been in normal ranges since then and I mostly feel fine (numbers below.) I have an appointment with my endo but not for some time (they are so booked I can only get in like every 6 months!). What I'm wondering is does this mean I had a temporary thyroid flare but not really an autoimmune disease? Do I not have Graves? If I did, why would I be showing normal numbers now? Thanks!

TSH 1.770 uIU/mL	0.450-4.500 N 
T4,Free(Direct) 1.13 ng/dL 0.82-1.77 N 
Triiodothyronine (T3)	129 ng/dL 71-180 N


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## Andros (Aug 26, 2009)

jezebel423 said:


> Hi All,
> 
> About a year ago things were going quite badly for me (hair loss, heat sensitivity, insomnia, weight loss, etc. etc.) I went to two endocrinologists and was told I had Graves disease after much testing. Here are some labs from that period of time.
> 
> ...


The binding, blocking and stimulating antibodies are what make your labs look normal.

These are antibodies to the receptor sites.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

TBII
http://www.ncbi.nlm.nih.gov/pubmed/9364248

You are hyper but what made the doctor draw the conclusion of Graves'?


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## jezebel423 (Oct 16, 2012)

To be honest, I'm not sure what made the doctor diagnose as Graves. They didn't do any additional testing except the blood work and a sonogram which showed that my thyroid was "swiss cheese." They also sent me to an eye doctor who said that while my pressure was normal, my eyes were no longer producing tears which can happen with Graves.

That being said, it's hard finding an endocrinologist who sufficiently can explain what's going on with me in a way I understand. I'm still losing my hair, but otherwise feel fine, and when the doctor called about the labs all she said is that they are normal now so I don't need to come back in.

Overall I'm just confused and don't know if I have a thyroid autoimmune disease or if this was just a passing thing and I'm fine now?


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## Ginav (Jun 7, 2013)

Hi - I know exactly how you feel. I was feeling very crazy and all kinds of symptoms and they put me on a beta blocker to help with the heart palps. I feel better somewhat and they haven't given me all of the results yet. I have been waiting for two weeks. I called and they said they didn't know what I was talking about. I feel that the Dr's just look at the blood work and they don't ask how you feel and give complete answers so I guess we need to be very proactive in letting them know what it is we are looking for in regards to treatment.

I was diagnosed with graves in 2005 and have been ok so I thought. I read on here to find out what tests should be done and to empower myself to have conversations with the Endo. I'm actually going to find another because she is not helpful at all. How can you not know about antibodies tests that you ordered?

I'm not so sure I was diagnosed properly either. I'm glad I found this board to figure out what direction to go in.

I don't know if that helps you but know you are not alone.


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## HotGrandma (Sep 21, 2012)

Jez
Can you provide dates of your labs. Also the dose amount and duration and labs when you were told you were hypo.

The reason I ask is this. Short term use of ATD's are great to bring your levels under control for surgery or RAI. But that wasn't scheduled. With your antibodies that high you need to be managed medically speaking. I would agree you probably have graves and probably hashi's too. Graves if forever sad to say but its because of the antibodies. Until those antibodies are under control you are not in remission. It can be treated and managed if you are an informed active participant in your care. Surely there is a GP or DO you could see while waiting for your endo appointment. I am with Andros you need to know where those antibodies are.


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## jezebel423 (Oct 16, 2012)

Thanks all for your responses. It's good to know I'm not alone, and it's really helpful to hear from people who know a little about the background of these thyroid diseases.

HotGrandma- the first labs posted (when I was hyper) were taken in October 2012. I was put on tapazole and stayed on it until February. My doctor took me off after seeing my January labs (below) which she said meant I was hypo. Within a month of coming off tapazole, I was in normal ranges and have been since. I still have some heart racing issues, but it doesn't happen all the time, and I think I notice triggers (such as drinking a glass of wine.) My hair is also still falling out. Otherwise, however, I feel mostly normal.

TSH	56.920 uIU/mL	0.450-4.500 H 
Triiodothyronine (T3)	115 ng/dL	71-180 N 
T4,Free(Direct)	0.45 ng/dL	0.82-1.77 L

You think I should request a blood test for the antibodies as well? I'm frustrated as I really want answers, or some clarity and it just isn't coming. There have been three periods in my life (at 25, 27 and 29) where I literally went off the deep end- all of the hyper systems, that lasted for months, the worst being months of sleeping 2 hours a night, if I slept at all. At 25 and 27 I was told it was anxiety, and I believed it even though there didn't seem to be a logical anxiety trigger. At 29, someone finally did a blood test and saw it was my thyroid. I still don't understand why it happens for 2-3 months and then disappears, and I feel total normal and then all the sudden a year or two later I'm back in the gutter.

How can I get this under control if I can't get doctors to do the right tests, to talk to me and explain what's going on, or even tell me WHY they think I have Graves? FRUSTRATING.


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## HotGrandma (Sep 21, 2012)

Jez. Here's where I'm coming from. I was suspected of having graves 2/2012 by 5/2012 my Free T3 was 5.5 (2.18-3.98). After months of ATD's 10/2012 Free T3 1.5. Severely hypo my TSI was 180 (-123) which confirmed graves. Your doctor would have taken me off ATD cause I was extremely hypo. Exactly the wrong thing to do unless you have RAI or surgery scheduled. The problem with graves is that it is an autoimmune disease. Its the antibodies that are making the thyroid miserable and over work. Additionally causing other health issues. Rapid pulse, high BP, digestive problems and on and on. While there is no such medication to cure the antibodies ATD's do help. In my journey I have researched and learned that you cannot enter into remission with high antibodies. Your levels need to be in the upper 50-75% range of normal while also taking ATD's.

What should have happened is to have Free T3 and Free T4. Tested every 4 weeks. Never longer. And decrease the ATD based on the FT4. That way neither of us would have traveled to hypo hell. There is so much literature that says ATD's should be taken for 18 months to 4 years or even lifelong. It all depends on the antibodies and they are in control. I went from 10 mg Methimazole 3 times per day to 1.25 mg once per day. My FT4 in 5/2013 was 1.1 (getting there). Had labs drawn last night so we'll see. My TRab was still elevated 4/2013. I plan to continue at this pace and re evaluate TSi for withdrawl in October the over 18 month mark. Every time I had a dose reduction it was hell for 2-4 weeks. What scares me about your care is that "abrupt withdrawl from ATD's can cause a "lthyroid storm". Last October when I finally grasped the reasoning behind ATD's and demanded copies of my labs and aimed for the goal is when I finally started getting better. Please find a different doctor.


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