[Edy]

#1059579

Hi everyone,

I just talked to my Endocrinologist and she says I probably have Graves’ Disease. I am wondering what to do.

Let me explain. Until mid-February 2012, I was on a 48 week clinical trial for Hepatitis C. I was taking 3 meds; a study drug, Interferon and Ribavirin. Dec 31, 2011, I noticed I was out of breath quickly, my heart was beating very fast, I was losing a lot of weight and I was weak. I went to my study drs. They took a bunch of tests and starting treating me with Procrit which stimulates the bone marrow to make red blood cells. When reading the test results they noticed my TSH was not detectable. I went to an Endo dr. All drs said it and high T3 & T4 were related to the Interferon or Ribavirin.

So, I started taking Methimazole and Propranolol. I took them and went Hypothyroid & started gaining weight. Now hyperthyroid back even though I’m still gaining weight (52 pounds since February). I moved to a different state. I was going to go to the Mayo clinic, but didn’t want to wait until the first of the year.So, I went to the University of Minnesota and the dr called me with the results today.

She did the TSH, T3 and T4. She also did a Thyroid Stimulating Antibody test. It was 4.3.

TSH was less than 0. Total T3 was 488 and the T4 was 4.66.
She wants to do a Iodine uptake test to really determine Graves.

I am looking for some advice. I never had any problem w my Thyroid until the 2nd time I took Interferon and Ribavirin.

[Kimberly]

#1175929

Hello and welcome! I’m sorry to hear you are going through this, but am glad that you found us.

We’re fellow patients here, not docs, so I’m not personally familiar with the Interferon/Ribavrin link with elevated T3/T4 levels.

As for Graves’, some docs will actually bypass the uptake & scan and instead rely on antibody testing for a definitive diagnosis of Graves’. It’s worth having this discussion with your doc to see what she believes this test will add to the diagnostic picture.

If you do get a definitive diagnosis, there are three available treatment options for Graves’: Anti-Thyroid Drugs, which block the production of thyroid hormone, Surgical Removal of the thyroid (thyroidectomy) and Radioactive Iodine (RAI), which destroys the thyroid gland. All three have risks and benefits, so you definitely want to do your research (from credible sources) and make an informed decision.

A great place to start is the “Treatment Options” thread in the announcements section at the beginning of the forum.

Take care – and please check back to let us know how you are doing!

[vanillasky]

#1175930

The scan doesn’t always reveal Graves’. I had it 2 times and they still came up with Hashimotos/Hashitoxicosis. Wrong! The true test is TSI – the antibodies that mean GRAVES. That’s the ticket. Mine is 800. Then there is TPO – the antibodies for Hashimotos. Mine were in normal range.

Dont know anything about the drugs you have been taking, but with your symptoms, it sounds like Graves’ to me but you have to go through some pretty extensive blood testing to be sure. Good luck!

Karen

[Edy]

#1175931

Hi,

Here’s the scoop.

Jan 31
TSH <0.01(Range 0.04 - 4.6o)
FT3 – 1599 (Range 230 -420)
FT4 – 6.2 (Range .08 – 1.7)

Feb 8
TSH <0.01
FT3 – 1862
FT4 – 5.0
Anti-TPO Antibodies – 144.3 (Range <9.0) (What is this)

April 8
TSH – 5.39 FT3 – 185
FT4 – 0.4

May 22
TSH – <0.01
FT3 – 1867
FT4 – 5.7

October 25
TSH – <0.01
FT3 – 1321
FT4 – 4.6

I moved to a different state in June, flew in to see my Endo in Oct. because they wanted to see me.
Last week I went to the University of Minnesota. (I was going to the Mayo clinic but we had a snow storm and I couldn’t go – so I called the Endo dept and the U of M and was able to get them to see me in 2 days.

The results
TSH < 0.01
Total T3 – 488 (I have never heard of this one – it’s different than the FT3)
T4 – 4.66
Thyroid Stimulating Anti-body – 4.3 (Does anyone know what this is?)
Oh, my EKG was abnormal, even though I don’t have high B/P or anything heart related.

She said I probably have Grave’s Disease and if I took the Meds instead of RAI or TT, I would need to take it for 2 years.

I don’t know what to do. I lost weight earlier in the year. I have put that on and more. 52#

[Kimberly]

#1175932

Wow, that’s great that you were able to get in so quickly!

In terms of choosing between anti-thyroid drugs, surgery, and RAI, the “treatment options” thread in the announcements section of the forum is a great place to start. Also, this board has a search function (in the top right-hand corner of the screen), so you can run a search for “ATDs”, “Anti-Thyroid Drugs”, “RAI”, “radioiodine”, “thyroidectomy”, “surgery”, etc. to read stories from other patients who have selected different options.

Also, if you do a search for “weight”, you will see that each patient’s experience is a little different. Some patients (including me) actually struggle with weight gain as opposed to weight loss, for reasons that aren’t well understood.

I would check with your doctor on the test you were unclear about. There is a TSI test called Thyroid Stimulating Immunoglobulin that tests for the Graves’ antibodies that cause stimulation of the thyroid, but I’m not sure if this is the exact same test.

I would also encourage you to get a hard copy of your labs (if you don’t already have them), so you can see where your levels are compared to your lab’s “normal” reference ranges – and keep track of them over time. Different labs can use different “normal” ranges, so the actual numbers are only useful in the context of your lab’s range.

Take care!

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