# Newly diagnosed with Graves



## Lizzy (Mar 3, 2011)

After many months of feeling achy all over, I was diagnosed with Graves. My TSH is .01, T4 Free is 4.3 and T3 Free is 14.9. I'm on 40 mg of Tapazole daily. I'm wondering if these numbers are significantly high and when I might begin to feel better.


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## april (Feb 23, 2011)

Hi. I was just diagnosed with graves too in Feb. What are your other symptoms? Has the medicine worked?


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## Lizzy (Mar 3, 2011)

My symptoms are a rapid heart rate, insomnia, achy joints & muscles (it's difficult to get up my stairs), and no stamina at all. There are probably other symtoms, but these are the first that come to mind. I had my first endo appointment 2 weeks ago and have been on Tapazole ever since. I think it's working but my symptoms tend to come and go (what feels like) hourly. Just when I think I'm beginning to feel pretty good, I seem to relapse and feel horrible. I'm wondering when I'll feel back to normal.??

What are your symptoms & numbers?


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## Debbie from Milwaukee (Apr 18, 2010)

Hi Lizzy and welcome to the board! If you can post the ranges for each of your tests the folks here will be able to make better comments. You might also want to check to see if you were tested for elevated antibodies--some of the people here can tell you exactly which tests those are. In Graves' disease, your own antibodies mistakenly cause your thyoid to overproduce thyroid hormone, thus alternately supercharging your whole body, then leaving you exhausted.

My middle daughter suffered from Graves' disease 4 years ago and ended up getting radioactive ablation. She later had complications that may have arisen from a jaw surgery (since physical and emotional stress can trigger your antibodies to cause overactive thyroid in Graves' disease or cause damage of the thyoid in the case of Hashimoto's) or that her body was unable to metabolize the usual synthetic thyroid hormone. Anyway, you can always click on my name below to see my account of my daughter's thyoid "journey." Happily, she is doing very well now.


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## Lizzy (Mar 3, 2011)

Thanks for your reply Debbie from Milwaukee. I'm glad that your daughter is doing well now.

Here are my lab results with ranges:
TSH, 3rd Generation = .01
T4 Total = 16.6 (range 4.5-12.0)
T4 Free = 4.3 (range .8 - 1.8)
T3 Total = 466 (range 76-181)
T3 Free = 14.9 (range 2.3-4.2)

I haven't figured out what all this means yet but know that I don't feel well. Thanks for your help.


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## Andros (Aug 26, 2009)

Lizzy said:


> Thanks for your reply Debbie from Milwaukee. I'm glad that your daughter is doing well now.
> 
> Here are my lab results with ranges:
> TSH, 3rd Generation = .01
> ...


Hi there Lizzy and welcome to the board!! Oh, gads...........................you sure are hyper!!

I am glad your doctor put you on Tapazole. Are you to take it all at one time or split it up? I ask because it has a short half-life of only a few hours and some patients feel better taking smaller doses through out the day.

Are you on a Beta-blocker for your heart?

Has your doctor run any antibodies' tests?

Such as these?

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

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Are you scheduled for RAIU (radioactive uptake scan?)

You are experiencing myopathy (muscle weakness); I had that too, really bad. I could not breath because the muscles supporting the lungs were not working properly and forget the steps. Are you kidding?

Here is info on that..
Myopathy from hyper.
http://www.medicalonly.com/2007/07/27/thyrotoxicmyopathy_hyperthyroidism

And while you are on Tapazole, you should make yourself familiar with this..........
Thyroid Storm Symptoms
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437

I was on tap and still had thyrotoxicosis so just be familiar w/ the symptoms for safety's sake!

Once again, welcome! Hope you get to feeling better real soon!

Do you have a goiter, are your eyes doing okay?


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## Lizzy (Mar 3, 2011)

Andros, thanks for your reply.

I'm taking 40 mg of Tapazole - 20 mg in the AM and again 20 mg in the PM.
Yes, I'm on 100 mg of Atenolol daily for my heart rate. It's also helped with my hand tremors.
I had an RAIU which confirmed Graves but I have yet to meet with my doctor to discuss the results & uptake (? not sure what that is or means). That will happen on March 23.
I don't think I've been tested for any of the antibodies you listed. I'll be sure to ask that these be included next time.
I think the Tapazole is working because I feel much better than I did a month ago. Looking back, I wonder how I was getting through the day because I really felt awful. I had to get a medical leave from work because I just couldn't get through the day. Thankfully, I think I'm turning the corner and look forward to feeling really good again.

Thank you for all of the links - I'll take a look at them - and thanks again for your insight and suggestions.


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## Andros (Aug 26, 2009)

Lizzy said:


> Andros, thanks for your reply.
> 
> I'm taking 40 mg of Tapazole - 20 mg in the AM and again 20 mg in the PM.
> Yes, I'm on 100 mg of Atenolol daily for my heart rate. It's also helped with my hand tremors.
> ...


I am so glad to hear that you feel some better and that you are splitting the dose. Both things are good news to my ears!!

I will be anxious for you to share the results of your RAIU with us if you would like to do so after you see the doc on the 23rd..

We are here for you Lizzy!! We have a wonderful and very knowledgable group of posters here. I am sure you will be an asset as well.


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## lavender (Jul 13, 2010)

Hi, I had graves diagnosed when I went into thyroid storm almost a year ago. I ended up having to take leave from work as well. Methimazole was not sufficiently helpful and I opted for surgery. It is good to hear you are feeling better on the meds. I hope things continue to get better for you.

I would ask your doc to run antibody tests: TSI, TPO and thyroglobulin.


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## Lizzy (Mar 3, 2011)

Lavender, thanks for your reply. 
I hope I don't experience a thyroid storm like you. Could that happen after starting meds? I'll ask my doc to run the antibody tests that you and Andros suggested. I appreciate everything I've learned on this message board.


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## Andros (Aug 26, 2009)

Lizzy said:


> Lavender, thanks for your reply.
> I hope I don't experience a thyroid storm like you. Could that happen after starting meds? I'll ask my doc to run the antibody tests that you and Andros suggested. I appreciate everything I've learned on this message board.


That is how I was finally diagnosed. Almost died from a thyroid storm. Sad, is it not? And scary. I went to doctors for over 20 years knowing full well something was wrong with my thyroid.


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## Lizzy (Mar 3, 2011)

Andros, 20 years? That's awful. After reading many posts, I think I'm pretty lucky. I've had symptoms for a long time but didn't really think it was anything. Fortunately, the first time I went to my GP and complained, she did blood work, told me I was hyper, and set me up with an endo. Thankfully my GP knew what she was looking for because I don't think I could have gone 20 years.

Is it possible to have a thyroid storm while on medication? After 2 weeks of medication, I had bloodwork and my TSH is still .01, but my T numbers are starting to come down. I felt better at the 2 weeks than I do now that I'm at 3 weeks of medication. I'm starting to feel more achy again. Have you/others experienced a plateau while on meds? I have blood work again next week, then meet with my endo for the 2nd time.


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## lavender (Jul 13, 2010)

I think the chances of thyroid storm are greatly reduced now that you are on meds and have a doctor paying attention. Just be aware of any changes in your symptoms and cal your doc with any concerns.

What happened to me was similar to what happened to Andros. Undiagnosed medical issues for 6 years. Docs blowing off my symptoms. Even a doc who looked at bloodwork that indicated a thyroid problem and blowing it off because I didn't "look" hyperthyroid 5 years ago. Had a doc who did not believe in running "unnecessary" bloodwork. Then, when I insisted on running a thyroid panel and it came back abnormal, I had to wait months to see an endocrinologist. My family doc would not treat my thyroid issue, and totally ignored it as I got sicker and sicker and my condition progressed to being in the lethal range.

Before all this, I had no idea how serious thyroid issues could be. Just thought it might have some affect on my weight. So, when my bloodwork was off, I did not know it's relationship to what was happening in my body. Plus, being that hyperthyroid made me a bit delusional. I thought I had just one more bout of the flu and that I just needed to wait for it to pass.


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## Andros (Aug 26, 2009)

Lizzy said:


> Andros, 20 years? That's awful. After reading many posts, I think I'm pretty lucky. I've had symptoms for a long time but didn't really think it was anything. Fortunately, the first time I went to my GP and complained, she did blood work, told me I was hyper, and set me up with an endo. Thankfully my GP knew what she was looking for because I don't think I could have gone 20 years.
> 
> Is it possible to have a thyroid storm while on medication? After 2 weeks of medication, I had bloodwork and my TSH is still .01, but my T numbers are starting to come down. I felt better at the 2 weeks than I do now that I'm at 3 weeks of medication. I'm starting to feel more achy again. Have you/others experienced a plateau while on meds? I have blood work again next week, then meet with my endo for the 2nd time.


It is possible but unlikely. It just depends on how bad off the patient is, what the dose of antithyroid might be and patient compliance i.e. taking as directed in a timely manner.

Sadly, nothing is carved in stone. So.................take good care of yourself.

My story is true; I lost the best years of my adult life. It is difficult to talk about is so I just let it out in dribs and drabs! Ha, ha!! Well, that works for me; anyway!!


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## Lizzy (Mar 3, 2011)

Lavendar & Andros: I said I would update after my 2nd endo appointment which was last week. I found out that my RAIU uptake was 77, my doctor only tests for TSI in pregnant women due to the expense, my numbers are starting to come down, my TSH hasn't budged from .01 and I'm to remain on 40mg methimazole a day. She sent me to an ophthalmologist who said I have thyroid eye disease too. Fortunately my symptoms are mild. The good news is that I'm feeling better (most of the time) and returned to work part time. My biggest concern right now is weight gain. I never lost weight when I was really hyper and have gained 5 pounds since my first visit 6 weeks ago.


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## Andros (Aug 26, 2009)

Lizzy said:


> Lavendar & Andros: I said I would update after my 2nd endo appointment which was last week. I found out that my RAIU uptake was 77, my doctor only tests for TSI in pregnant women due to the expense, my numbers are starting to come down, my TSH hasn't budged from .01 and I'm to remain on 40mg methimazole a day. She sent me to an ophthalmologist who said I have thyroid eye disease too. Fortunately my symptoms are mild. The good news is that I'm feeling better (most of the time) and returned to work part time. My biggest concern right now is weight gain. I never lost weight when I was really hyper and have gained 5 pounds since my first visit 6 weeks ago.


Yes; contrary to what most people think, weight can be a problem for hyper. I gained weight too. But, I did go on a very strict and sensible diet and managed to maintain my weight (no further weight gain) and have since returned to my normal weight.

So glad to hear from you and that you are feeling better.


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## lavender (Jul 13, 2010)

Did I read this right, your doctor is treating you with methimazole and only testing your TSH???? that is very dangerous and completely irresponsible IMHO. When I was on Methimazole, I was monitored monthly at the least for TSH, Free T3 and Free T4. I know those tests coast a bit more, but they are extremely important with hyperthyroidism. Reason being that TSH is a slow hormone. It takes a long time to change to accurately reflect what is going on with your T3/T4. T3 is your active hormone and can spike long before your TSH drops and accurately reflects your condition. Also, your T3/T4 levels may have gone down while your TSH can take 4-6 weeks to recover.


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## AZgirl (Nov 11, 2010)

andros, thanks so much for the link for Thyrotoxic Myopathy. before graves, aug 2010, i noticed all my muscles just failing! And as a regular bike cycler, and weight lifter, this seemed very odd, thinking i was over doing it (which im still quite sure i was as per husband and family) but my muscles always felt week later, and that all started the last few months before i foundout about graves. felt very heavy... i have never heard of Thyrotoxic Myopathy and thanks to your link, i know that was me! and i also noticed after being treated with methimazole for 7 months, yaaa down to 2.5 mgs a day from 40 back last summer, i am finally getting it back together. So Lizzy, there is certainly some hope. However, i will add, it was a heck of a long 7 months going from very hyper to extremely HYPO from high dosage, but labs show results that im very close to a good range... (still a little hypo as of today) but dosage lowered, well see next lab in 5 weeks!


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## Andros (Aug 26, 2009)

AZgirl said:


> andros, thanks so much for the link for Thyrotoxic Myopathy. before graves, aug 2010, i noticed all my muscles just failing! And as a regular bike cycler, and weight lifter, this seemed very odd, thinking i was over doing it (which im still quite sure i was as per husband and family) but my muscles always felt week later, and that all started the last few months before i foundout about graves. felt very heavy... i have never heard of Thyrotoxic Myopathy and thanks to your link, i know that was me! and i also noticed after being treated with methimazole for 7 months, yaaa down to 2.5 mgs a day from 40 back last summer, i am finally getting it back together. So Lizzy, there is certainly some hope. However, i will add, it was a heck of a long 7 months going from very hyper to extremely HYPO from high dosage, but labs show results that im very close to a good range... (still a little hypo as of today) but dosage lowered, well see next lab in 5 weeks!


You are so welcome. It always helps to understand things. "Knowledge removes fear!"


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