# New to Group



## lsangels (Aug 15, 2011)

Hi. I am 46 years old. Last week I was diagnosed with Graves Disease. I have never been diagnosed with hyperthyroidism until now, even though my lab tests have shown it in the past.

I have been suffering with chronic headaches/migraines for about four years. I've had anxiety (prescribed xanax) rapid heart rate/palpitations (toporol) insomnia (lunesta) and various other ailments (hives, muscle weakness, joint pain, weight loss, excessive sweating).

I have been on over 45 medications in the last four years for migraines. Some days I can't get out of bed.

I went to an allergist in January because I had daily hives covering my entire body. He did blood work and my thyroid levels were off. I went to see an Endo and he blew me off and told me nothing was wrong. After six months of chronic hives they went away. In July, I went for my annual gyno appt. Doc did blood work and said I was severely hyperthyroid. I went to an Endo who ran blood tests and scan. I was told I have Graves. She prescribed 60mg of Tapazole. I take 20mg 3/day.

Lab results
Free T4 3.30
TSH less than 0.006
Thyroid Stim Immunoglobulin 377
T3 186
Sedimentation Rate-Westergren 9
TPO 282
Triiodothyronine, Free, Serum 9.1

Yesterday was day four on meds and for about two hours I had a burst of energy. I was bouncing off the walls and then I crashed. Very tired and dizzy and sweating more than usual.

I'm really not sure what questions to ask as I am new to this diagnosis. I plan on following this forum to learn as much as I can.

Thanks,
Linda "


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## Andros (Aug 26, 2009)

lsangels said:


> Hi. I am 46 years old. Last week I was diagnosed with Graves Disease. I have never been diagnosed with hyperthyroidism until now, even though my lab tests have shown it in the past.
> 
> I have been suffering with chronic headaches/migraines for about four years. I've had anxiety (prescribed xanax) rapid heart rate/palpitations (toporol) insomnia (lunesta) and various other ailments (hives, muscle weakness, joint pain, weight loss, excessive sweating).
> 
> ...


Welcome to the forum!










You are not alone; so many here have been "blown off" until such time as they could not put one foot in front of the other or nearly died. You are lucky you have not had a thyroid storm all these years or have you?

Thyroid Storm
http://www.clivir.com/lessons/show/thyroid-storm-symptoms-causes-and-treatment.html

And, wow!! Your TSI (thyroid stimulating immunoglobulin) is "really" high! Eeeeeeeeeeeks!

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://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

And since you are in the advanced stage, you might find this helpful.

Myopathy from hyper.
http://www.medicalonly.com/2007/07/27/thyrotoxicmyopathy_hyperthyroidism

What a sin that you have been on all those different pharmaceuticals all those years. I am so so sorry for this.

And I would like to give you my opinion which is based on years of observation.

It would be very very important for you to get RAIU (radioactive uptake scan) to make sure you don't have cancer. You would have to stop your anti-thyroid med to do this. Probably for about a week as it has a half-life of literally 3 to 4 hours. Could possibly clear your system a bit sooner.

Thyroid cancer in patients with hyperthyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/12876418

And additonally, it has been my observation and experience that in the advanced stages, the best thing to do is have the thyroid out; that is if you want to get on w/life. Anti-thyroid meds just don't cut it.

Remember; this is opinion only based on a modicum of experience!

In the future, in addition to your lab results, ranges are really helpful as different labs use different ranges.

Nice to meet you, Linda!


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## lsangels (Aug 15, 2011)

Andros...thank you so much for all the information. It is very helpful. Sorry I forgot to mention that I did have a Thyroid uptake scan.

My results were:
The 4 hour radioiodine uptake was 44%, normal range is 5-15% and the 24 hour uptake was 71%, normal range is 15-35%

Lab results
Free T4 3.30 range 0.82-1.77

TSH less than 0.006 range 0.45-4.5

Thyroid Stim Immunoglobulin 377 range 0-139

T3 186 range 71-180

Sedimentation Rate-Westergren 9 range 0-39

TPO 282 range 0-34

Triiodothyronine, Free, Serum 9.1 range 2.0-4.4


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## Andros (Aug 26, 2009)

lsangels said:


> Andros...thank you so much for all the information. It is very helpful. Sorry I forgot to mention that I did have a Thyroid uptake scan.
> 
> My results were:
> The 4 hour radioiodine uptake was 44%, normal range is 5-15% and the 24 hour uptake was 71%, normal range is 15-35%
> ...


Aside from the rate of uptake, were any irregularities noted on the RAIU result form? Any nodules noted, vasularity, heterogenicity?

You are really really in hyperland; that is a given.

And thank you so very very much for adding the ranges. They are most helpful and boy; that Triiodothyronine (FREE T3) is really really high. That is your active hormone so I know you have the jitters not to mention other symptoms.

Pretty high uptake also!

How are your eyes? Do you have a goiter?


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## webster2 (May 19, 2011)

lsangels said:


> Hi. I am 46 years old. Last week I was diagnosed with Graves Disease. I have never been diagnosed with hyperthyroidism until now, even though my lab tests have shown it in the past.
> 
> I have been suffering with chronic headaches/migraines for about four years. I've had anxiety (prescribed xanax) rapid heart rate/palpitations (toporol) insomnia (lunesta) and various other ailments (hives, muscle weakness, joint pain, weight loss, excessive sweating).
> 
> ...


Welcome! My goodness, it never ceases to amaze me the long route it takes to get diagnosed, it is a wonder you have any energy. You poor thing, all of those medications, and none were helping. You have come to a great place to get some information.


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## lsangels (Aug 15, 2011)

thank you all! it is so helpful to have others to turn to who are going thru the same thing.

I am going for an ultrasound on thursday. Report states: Mildly enlarged bilaterally functioning thyroid gland. Questionable small hypofunctioning nodule at the right lower pole on the LEO view only.


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## AZgirl (Nov 11, 2010)

60 mgs!!!!!! O MY GOSH that is very high!!!!!!!! i was on 40mg and rash bad,,, so i dropped to 20 by myself,,,, my new endo told me she give patients 50 when they are admitted to the hospital!! please, get a 2nd opionion... next thing you know, youll develope rash bad and hypo bad, and the doc will encoursage you to do RAI because your "body cant handle meds" DO NOT LISTEN TO THAT IF IT HAPPENS.. i think you have been mismanaaged with the meds! many studies indicateing you dont need that high of dosages! there are also studies that show that doses above 10 mg per day are unnecessary - even if a person is very hypO and has the 'worst' Graves. 10mg, 20mg and 30mg all had the same result 3 months into therapy - all were euthyroid. But the people on the high doses suffered the most hair loss and hives, since the hormones came down way too fast, and a titration before landing hypO was much harder to achieve.


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## Rebecca1986 (Aug 14, 2011)

I just wanted to come back and welcome you tothe group.

I remember what it was like when I first got diagnosed!! It was plain scary and all the medical terms doctors use now!!! They are scary in themselves!!

Trust me you will feel better, but it's not an overnight job, like we all wish it could be.

Take it easy on yourself and with time and the correct medication you will get there.

Hugs!!

Rebecca


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## Andros (Aug 26, 2009)

lsangels said:


> thank you all! it is so helpful to have others to turn to who are going thru the same thing.
> 
> I am going for an ultrasound on thursday. Report states: Mildly enlarged bilaterally functioning thyroid gland. Questionable small hypofunctioning nodule at the right lower pole on the LEO view only.


 There you go; I knew they had to say something. Please let us know about the ultra-sound and whether or not they will do FNA.

Bless your heart; you must be fraught with worry! We are here for you!


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## lsangels (Aug 15, 2011)

thanks again everyone. the doctor prescribed 60mg for the first week and then 40 mg after that. i have to see her in six weeks. today was a rough day. i spent 14 hours in the hospital with my dad. he has to get a defibrilator implanted tomorrow. my body aches and i am exhausted. gotta go and do it all over again. i may have to reschedule my ultrasound on thursday because i need to be with him.

how long does it take being on meds before you start to feel better? doc told me i could start to feel better in three days....not feeling it yet


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## AZgirl (Nov 11, 2010)

Once on meds, ususally you start to see a difference in your FT3 and FT4 within usually 5-6 weeks. This is why doc do labs around then. Im more worried about you feeling worse then better, im sorry to sound that way, but that is still a very high dose! When overdosed, your symtoms are HYPO not HYPER......some signs are the following so keep an eye out for them... •Being more sensitive to cold
•Constipation
•Depression
•Fatigue or feeling slowed down
•Heavier menstrual periods
•Joint or muscle pain
•Paleness or dry skin
•Thin, brittle hair or fingernails
•Weakness
•Weight gain (unintentional
make sure you post your next labs up with their ranges.


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## AZgirl (Nov 11, 2010)

And of course a lot of those symptoms can go along with having to deal with your dad! so sorry to hear that...


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## Andros (Aug 26, 2009)

AZgirl said:


> 60 mgs!!!!!! O MY GOSH that is very high!!!!!!!! i was on 40mg and rash bad,,, so i dropped to 20 by myself,,,, my new endo told me she give patients 50 when they are admitted to the hospital!! please, get a 2nd opionion... next thing you know, youll develope rash bad and hypo bad, and the doc will encoursage you to do RAI because your "body cant handle meds" DO NOT LISTEN TO THAT IF IT HAPPENS.. i think you have been mismanaaged with the meds! many studies indicateing you dont need that high of dosages! there are also studies that show that doses above 10 mg per day are unnecessary - even if a person is very hypO and has the 'worst' Graves. 10mg, 20mg and 30mg all had the same result 3 months into therapy - all were euthyroid. But the people on the high doses suffered the most hair loss and hives, since the hormones came down way too fast, and a titration before landing hypO was much harder to achieve.


I believe you are right about that. Oh, dear!


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