# Newly Diagnosed



## Dory (Jul 23, 2012)

Hey everyone!

I was just diagnosed with Graves disease on Friday. I'm overwhelmed, a little scared & quite nervous about what is in store for me.

The beta blockers seem to be helping greatly with my symptoms & my endocrinologist just started me on Methimazole. I'll be starting on 10mg, but taking 20mg for the first 3 days(why?).

I haven't gotten any info from my endo about what's next. I'm guessing Radioactive Iodine?

Any info you have about living with graves would be really helpful! I'm looking forward to reading all the posts on here & learning all I can about my diagnosis.


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## webster2 (May 19, 2011)

Hi & welcome!

I can imagine that you are a bit nervous. It does get better! What were your symptoms that led to the diagnosis of Grave's disease? Do you have lab results that you are able to share, and the ranges? When do you see the endo again?

I can only speak from my experience. The beta blockers did help a great deal. I started on a low dose of methimazole and was increased very quickly. I think it was because surgery was the option we were going for.

Have you had an ultra sound or RAIU of your thyroid?

I am about 2.5 years out from having surgery and feel pretty good, better than I have in years.  I am sure others will be along with some comments for you!


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## Andros (Aug 26, 2009)

Welcome to the Board!! Sorry to hear you have been diagnosed w/Graves' but very glad you are getting medical intervention. I should imagine the doc wants to give your body a head start w/the Methimazole.

Many of us here wished that we never wasted months, even years on anti-thyroid meds. If I could do it over, I would have gone straight on to surgery or RAI. Once I had the RAI, I got on track and got my life back.

Others will comment. Glad you are here.


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## Dory (Jul 23, 2012)

Hey Guys!

I had posted on the boards back in 2012 because I had a lot of hypothyroid symptoms. I had slightly elevated TPO antibodies but the rest of my labs were normal(ish) and confusing the hell out of me. In early 2013 an Endocrinologist looked at all my labs, said I most likely had Hashimotos and put me on 25mg levothyroxine. Fast forward a month. I still felt really crappy, so we adjusted my dose to 37.5mg. Fast forward to 6 months in. Still felt exactly the same, so endocrinologist ordered labs. My TSH was at 0.06, but I had no hyper symptoms other than slightly elevated blood pressure. So my endocrinologist lowered my levothyroxine dose back to 25mg. This was in July of last year. By August, I wasn't taking levothyroxine anymore because I ran out & I didn't feel it was helping. I had an appointment to see my endocrinologist In December, so I was waiting to see him to discuss my numbers.

A few months later I was having heart palpitations when I laid down, but I chalked it up to stress. Around Thanksgiving last year (totally off the levothyroxine) I noticed that in the morning after I had showered & dried my hair I would sweat for hours & in general I was extremely hot. No winter coat needed this year! I would get winded going up stairs & my heart was palpitating more regularly.

Around the first of December I had a sinus infection & when I went to the minute clinic for a z-PAC my heart rate was 121. My blood pressure was 141/89. I haven't gained any more weight, but I haven't lost any either (that I know).

I finally got new insurance effective 2/1 and immediately got my labs drawn and got an appointment.

Here are my current labs (2/3/14): (only taking vitamin D pills weekly)

Thyroxine Free: Result 2.5 ng/dL (High) / Normal: 0.7 ng/dL - 1.8 ng/dL
Triiodothyronine: Result 271 ng/dL (High) / Normal: 60 ng/dL - 181 ng/dL
TSH: Result < 0.01 mcIU/mL (Low) / Normal: 0.55 mcIU/mL - 4.78 mcIU/mL
TSH Receptor Antibody: Result 5.12 IU/L (High) / Normal: <= 1.75 IU/L

Ferritin: Result 28 ng/mL / No Range Given

Calcium: Result 8.8 mg/dL (Low) / Normal: 8.9 mg/dL - 10.3 mg/dL

Vitamin D: Result 25.2 ng/mL (Low) / Normal: 29.9 ng/mL - 74.0 ng/mL

B12: Result 221 pg/mL / Normal: 211 pg/mL - 911 pg/mL

I also had a radioactive iodine uptake & thyroid scan done on 2/26/14. My endocrinologist said the scan plus the antibodies confirms Graves. I don't have the results of the scan, but I am tryingn to get them.

I would say my main symptoms would be racing heart, heart palpitations, shaking hands and muscles in general, weakness, frequent bowel movements, antsy/shaky/on speed feeling, insomnia despite being tired, easily winded, heat intolerance, excessive sweating, adrenaline rushes, trouble coming up with words/brain fog, swelling ankles/feet, sweaty palms, acne, increased appetite, but food doesn't seem appealing, joint pain (everything hurts) and aching pain in my neck.

I've been on Metoprolol 75mg throughout testing for the symptoms & my endocrinologist just started me on Methimazole 10mg (taking 20mg for the first 3 days).

My next appointment isn't until May, but he asked me to get labs re-drawn in 3-4 weeks. Said if I needed to he could get me in sooner.

I have to say that the beta blockers have helped a lot. I still get tired really easily, and any kind of semi-strenuous exercise is too much for me. I was trying on clothes a few days go, and my heart started freaking out, I started sweating, hands started trembling and I got a little dizzy. As soon as I sat down and got quiet, I felt fine again. Is that normal? I'm scared to exercise. I get tired walking to my car across a parking lot, and my heart starts beating fast. It's like I'm a 90 year old woman in a 33 year old's body. The way I described it to my mother was, I constantly feel like the first day you get out of bed after having the flu for 8 days.

FOR REFERENCE:

Sometime in 2008: (on birthcontrol pills)

TSH: 3.37 uIU/mL (normal : 0.47-5.01)

January 2012: (on birthcontrol pills)

T-Uptake : 1.5% (Abn:H) (normal: 0.7-1.2)
Free T4 : 0.7 NG/DL (normal: 0.7-1.9)
Triiodothyronine Free, Serum : 3.2 (2.0-4.4)
TSH : 2.83 uIU/mL (normal: .47-5.01)
T4 : 10.0 UG/DL (normal: 4.5-12.0)

Thyroid Stim Immunoglobulin : 119% (normal: 0-139)
Thyroid Peroxidase (TPO) Ab : 40 IU/ml (Abn:H) (normal: 0-34)
Antithyroglobulin Ab : <20 IU/mL (normal: 0-40)

June 2012: (off birthcontrol pills for good)

TSH - 2.98 uIU/mL (.45 - 4.5)
T4 - 5.8 ug/dL (4.5 - 12)
Free Thyroxine - 1.7 (1.7 - 4.9)
TPO Antibodies - 29 IU/mL (0 - 34)
T3 Uptake - 29 % (24 - 39)

November 2012:

Free T4 - 0.9 NG/DL (0.7-1.9)
TSH - 0.63 uIU/mL (0.47-5.01)
Thyrotropin Receptor Ab, Serum - 0.85 IU/L (0.00-1.75)
Triiodothyronine (T3) - 118 ng/dL (71-180)
Thyroid Peroxidase (TPO) Ab - 27 IU/ml (0-34)
Antithyroglobulin Ab: <20 IU/mL (normal: 0-40)

April 2013:

Thyroxine Free: Result 0.9 ng/dL / Normal: 0.7 ng/dL - 1.8 ng/dL

TSH: Result 2.76 mcIU/mL / Normal: 0.55 mcIU/mL - 4.78 mcIU/mL

Testosterone Total: 43 ng/dL

Blood Cortisol: Result 18.0 mcg/dL / No Range Given

May 2013: (on 25mg levothyroxine)

Thyroxine Free: Result 1.1 ng/dL / Normal: 0.7 ng/dL - 1.8 ng/dL

TSH: Result 2.29 mcIU/mL / Normal: 0.55 mcIU/mL - 4.78 mcIU/mL

Blood Cortisol: Result 14.1 mcg/dL / No Range Given

July 2013: (on 37.5mg levothyroxine)

TSH: Result 0.06 mcIU/mL / Normal: 0.55 mcIU/mL - 4.78 mcIU/mL

October 2013:

Cortisol Free Urine 24 Hour: Result 37.2 / Normal: <= 45.0

Cortisol per Volume Urine: Result 15.50 mcg/L / No Range Given


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## webster2 (May 19, 2011)

Wow, you are are hyper. It is no wonder you feel wiped out all of the time. I am not sure if you have been told not to exercise but you really shouldn't right now. I am glad you are having lab tests in a couple of weeks. If you are not feeling any improvement, it might be a good idea to contact your endo before May. You sure do have a lot of symptoms and they are not easy to deal with. I agree with Andros that the anti-thyroid medication is not the answer but a stopgap before the real treatment. Thanks for sharing your story and I hope that you will be on the path to feeling better very soon.


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## gravie (Mar 3, 2014)

Hi am am just diagnosef too .Feel so stupid asking this but I cant work out how to post! Did this by pressing reply but how do yoi start a post? Sorry to use this way to find out but after hoirs trying to figure it out I couldn't think og any other way.Like you I am confused by diagnosis and dont understand any of it.Thamkyoi


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## Andros (Aug 26, 2009)

You are hyper; that is for sure!! Many of us suffered w/hypo for years only to develop full-blown Graves' Disease!

How are your eyes?

Exercise is absolutely contraindicated at this time. Has your doctor explained all your options to you? You might want to consider ablation of your thyroid. We will support you no matter what decision you make.

Hugs,


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## Dory (Jul 23, 2012)

My eyes seem ok. Maybe a little dry/gritty? The pollen is starting to come out where I live, and I work on a computer all day, so either of those things could contribute to my eyes feeling a bit weird. I could also be imagining it because I am TERRIFIED of them bulging. I'm a woman, and I'm a little vain. How many people's eyes get really bad & bulge vs. just have mild GO symptoms?

Haven't been told anything by my endocrinologist. I figured out on Friday that I shouldn't exercise. I went into target to buy a couple new bras, and while trying them on, I started to sweat, I got pale, my heart was pounding, I felt weak, my hands were shaking and I got a little dizzy. Within 5 minutes of me sitting down and resting, I felt fine again. Lesson learned.

My endocrinologist has been very responsive up to my diagnosis. But, he told me about Graves & my new medication via a portal email. No one has called me to tell me anything. That kind of pissed me off, because I would think that getting a life changing diagnosis that normally results in some kind of thyroid killing or surgical removal would warrant a phone call. But they are emailing me back and forth, so I guess as long as they are responding promptly, I can't complain too much. Everything they tell me to so is in writing too, which I like. I like CYA when it comes to medical stuff.

So right now, I don't know the plan of action, what to do, or more importantly what NOT to do, and I don't know what to expect. I've done some research on Graves, so I know a little. I have no idea what my endocrinologist's plan is, and that's disconcerting. Still scared. As much as I know this is treatable, I've never been in a hospital other than to visit someone. Surgery scares me, and the whole radioactive iodine thing freaks me out. Either option has major risks. I'll be going through both the RAI and Surgery boards and reading up on peoples experiences so I can be better educated when I have to make a decision.

On another note, would you say I would benefit from a multi-vitamin?

Ferritin: Result 28 ng/mL / No Range Given

Calcium: Result 8.8 mg/dL (Low) / Normal: 8.9 mg/dL - 10.3 mg/dL

Vitamin D: Result 25.2 ng/mL (Low) / Normal: 29.9 ng/mL - 74.0 ng/mL

B12: Result 221 pg/mL / Normal: 211 pg/mL - 911 pg/mL


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## Dory (Jul 23, 2012)

Endocrinologist just upped my Metoprolol dose to 100mg & my Methimazole dose to 20mg. My symptoms seemed to get worse after the Radioactive Uptake & thyroid scan. Could that little dose of radioactive iodine mess with me?

He said "The plan is to get you feeling well first with the Methimazole. Once this is set we can adjust dose and continue this mediacation or discuss radioactive iodine treatment as definitive treatment."

I guess that ok with me for now.

Is it normal for doctors to use email more than calling these days? Mine has been primarily emailing me through the hospital's "patient portal". He's very responsive, sends me my lab results via email as soon as they are ready. It's nice to have things that fast, but it's a little impersonal. Thoughts?

What would you guys suggest? RAI or Surgery? I got the feeling from earlier posts that staying on Methimazole is not the option I want to go with. It seems like a bandaid with bad side effects.


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## webster2 (May 19, 2011)

My endo emails me and he phoned today. I am between appointments. I like the email, myself. It is quick and I have a record. I have my lab results same day by email too.

Methimazole is hard on the liver. If anyone stays on it awhile, labs are necessary to check liver function. Thyroid replacement drugs convert from T4 to T3 in the liver so optimal liver function is really important to thyroid folks.

Once again, I need to state this is my experience and it may differ for others. I had a partial thyroidectomy in 1990. It was kind of a wham, bam, thank you ma'am kind of thing and I went back to regular life. When it cropped up again 20 years later, patient input and being an informed patient were considered. RAI scared the crap out of me, and it isn't always successful on the first time. Surgery was a known factor for me and it seemed less scary. It is not an awful surgery, if one has to have surgery.

The best thing to do is to educate yourself so you can be your own best advocate. I learned a lot of things here so that I felt comfortable in my decisions and discussing my treatment plan with the doctors.


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## Dory (Jul 23, 2012)

I also just noticed that my Absolute Immature Neutrophils were high. What is that?

Result 0.01 10E3/mcL (High) / Normal: <= 0.00 10E3/mcL

Never had that before, I don't think. Worrisome?

My throat/thyroid has been aching, my mother noticed today that my voice was a little horse. My throat also feels full. That's the best way I can describe it.

No one has said the word goiter to me. Does the attached pic look goiter-ish, or normal-ish?


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## webster2 (May 19, 2011)

You can do the glass of water test, swallow and look in the mirror to see if there may be a bulge. I thought I sounded like a boy in puberty for about 6 months. My throat felt full and the side of my head hurt. I have no clue on your lab test. Someone will b along that will know.


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