# Just plain Frustrated...need encouragement



## khop (Feb 2, 2010)

I am 28 yo female, been diagnosed sine 6/08.

When I was diagnosed I went to dr right away...racing heart and shakes were not normal for me. Immediately got the graves test and came back positive. Although my levels were through the roof my dr put me on Tapizol for 6 mos before RAI. The weeks following RAI were horrible...and months later felt no different. Again in June of 09 I did RAI again and had no luck.

My dr. decided to talk about surgery finally in November of 09. Problem was...I was moving out of state in Dec 09. I am now settled in my new home, got married (with pictures of me looking like a zombe) and I am ready to tackle this.

I went to a new endocrinologist last week and they told me they won't take my thyroid out...I am so discouraged by this news I feel like this is never ending.

I am also confused because most of the people who list having my sypmtoms of fast (127) hr, muscle weakness, joint pain, sweaty etc claim to have lots of energy...I am the opposite and I am tired all the time. How does this happen?


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## sidpb (Jan 2, 2010)

I wonder why they won't take out your thyroid? It seems reasonable to me. I was diagnosed with Graves in Dec. 09 and they said it was one of my options which I chose because I had heard of so many people having problems after having RAI 2 or 3 times. I'd find another Endo or go to a surgeon. I had NO energy. I felt at first like I did but whenever I would try to do something I would poop out in just a few minutes and shake like I drank a pot of coffee and ran a marathon without eating. I was generally a very high energy person. We have a 25 horse ranch and ride 2 or 3 horses 4 or 5 times a week. Plus I worked out 4 days a week and worked part time in my Salon. It's very shocking to find your muscles wasting all of a sudden and barely have enough energy to type on the computer - I feel for you khop! SERIOUSLY find an endo or a surgeon who will help you. Maybe start with a GP who can refer you.


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## Andros (Aug 26, 2009)

khop said:


> I am 28 yo female, been diagnosed sine 6/08.
> 
> When I was diagnosed I went to dr right away...racing heart and shakes were not normal for me. Immediately got the graves test and came back positive. Although my levels were through the roof my dr put me on Tapizol for 6 mos before RAI. The weeks following RAI were horrible...and months later felt no different. Again in June of 09 I did RAI again and had no luck.
> 
> ...


If the new endo won't take out the thyroid, what does he/she purport to do as far as treatment is concerned? What if you have cancer? People w/ cancer sometimes don't uptake the radioactive material too well. Also, they often present w/ hyperthyroid.

You are tired because even while you are at rest, your body is in high gear. This is exhausting.

You may have to seek out another doctor.

Are you on any meds for this at all?


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## khop (Feb 2, 2010)

I am on both tapizole and metroprolol. I have been on incredibly aggressive doses with no result.

I want to know more about the surgery...and yes, I will go to doctor after doctor until someone helps me.


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## Andros (Aug 26, 2009)

khop said:


> I am on both tapizole and metroprolol. I have been on incredibly aggressive doses with no result.
> 
> I want to know more about the surgery...and yes, I will go to doctor after doctor until someone helps me.


Wow!! I wonder if you have ectopic thyroid tissue somewhere else in your body?

Struma Cordis 
Functioning apparently normal intracardiac thyroid tissue has been reported a few times and has been visualized by radioiodine imaging (95). The clinical finding is usually a right ventricular mass, and the diagnosis has typically been made after operative removal.

Finally, ectopic thyroid tissue has been reported rarely in the submandibular (96) an parotid (97) salivary glands, in the duodenum (98), the adrenal (99), the gallbladder (100), and the iris of the eye (101). Of course, great care must be exercised to be certain that these are not metastases from a well differentiated thyroid cancer.

You may wish to read about ectopic thyroid here.....
http://www.thyroidmanager.org/Chapter21/ch01s20.html

I have heard of it on the lungs, ovaries, the heart, the stuff mentioned above and all sorts of places. The tissue travels somewhat like endometriosis.

It is a terrible thing to have to be your own advocate when one does not feel well.

Sending hugs,


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## Lovlkn (Dec 20, 2009)

khop said:


> I am on both tapizole and metroprolol. I have been on incredibly aggressive doses with no result.
> 
> I want to know more about the surgery...and yes, I will go to doctor after doctor until someone helps me.


Depending on your health plan you should be able to go to a surgeon and tell them to take it out.

Get copies of all your lab work - take it with you to the surgeons office and there shouldn't be any issue. If you ned a referral that is where you might have issue if the endo does not support your decision they you definitely need to find another doctor.

My surgeon was fantastic - leaving only a 1" scar -

What are your current labs and medication doses?

What state are you in?


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## khop (Feb 2, 2010)

Im in CA. I have been in Florida for most of my treatment though...and had a great endo. I am waiting on my referral to another new endo over here...since the first didn't work out. I am on health benefits that require referrals. Honestly...I am prepared to go to endo after endo until I find someone who will work with me.

I am on Tapizol and take 8 pills a day...not sure what the dose. The pharmacy will never give me the script till they call the dr...because they don't believe the dosing. It has not been effective in treathment though. I am also on metroprolol...I am only supposed to take one a day but have been taking 2.

My endo is still treating me (prescribing etc) from Florida until I find someone who will work with me. I go for new bloodwork this Wed and I am interested to see the results...


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## Andros (Aug 26, 2009)

khop said:


> Im in CA. I have been in Florida for most of my treatment though...and had a great endo. I am waiting on my referral to another new endo over here...since the first didn't work out. I am on health benefits that require referrals. Honestly...I am prepared to go to endo after endo until I find someone who will work with me.
> 
> I am on Tapizol and take 8 pills a day...not sure what the dose. The pharmacy will never give me the script till they call the dr...because they don't believe the dosing. It has not been effective in treathment though. I am also on metroprolol...I am only supposed to take one a day but have been taking 2.
> 
> My endo is still treating me (prescribing etc) from Florida until I find someone who will work with me. I go for new bloodwork this Wed and I am interested to see the results...


I sure hope that you are getting your liver enzymes checked. That much Tap can be damaging to the liver on the long haul for some patients. It's not like the doctors don't know this. I had to have my enzymes checked every 8 weeks while on Tap.


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## khop (Feb 2, 2010)

Newest Test Results:

TSH 
<.05 (.10-5.5)

T4
3.6 (.8-1.7)

Waiting on T3 and Vitamin D


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## Andros (Aug 26, 2009)

khop said:


> Newest Test Results:
> 
> TSH
> <.05 (.10-5.5)
> ...


Wow!! Why doesn't your doctor run Free T4 and Free T3? With Total 4 and 3 you can't tell what is bound, unbound and reverse hormone.

We would want to know what the unbound portion of hormone is which is available for cellular uptake. The Frees are your active hormones.

Thank you for posting your results and ranges. I think you are still in hyper territory but as I said, with the Total, it is hard to say lab wise. Clinically, you know you are hyper, right?


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## khop (Feb 2, 2010)

It was Free T4...thought that was what I had posted...


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## Andros (Aug 26, 2009)

khop said:


> It was Free T4...thought that was what I had posted...


Oh, it just says T4. If that is FT4, then it is conclusive. You are in hyper territory. The lab test confirms it and I will love to see the Free T3 when it comes in.

But since you are on Tapazole, I'll bet those Free numbers have come down significantly?


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## khop (Feb 2, 2010)

Unfortunately I just had my blood taken yesterday and those are the results. I have been on Tapizole for months, and have felt no relief and seen no relief in the test results. I will post Free T3 when I receive. I know I am very hyper and know that Tapizole isn't the asnwer afte over a year...which is why I want surgery.


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## Andros (Aug 26, 2009)

khop said:


> Unfortunately I just had my blood taken yesterday and those are the results. I have been on Tapizole for months, and have felt no relief and seen no relief in the test results. I will post Free T3 when I receive. I know I am very hyper and know that Tapizole isn't the asnwer afte over a year...which is why I want surgery.


And I could not agree more. I wasted more than a year on Tap myself. Advanced cases of hyperthyroid do not respond well to anti-thyroid meds I have observed and personally experienced.

If I could do it over; I would have it yanked forthwith. I kid you not.


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