# Graves..Help!!!



## spurrier (Aug 14, 2011)

Hello! I'm new here...Diagnosed with Graves few months ago. Started Methimazole, after 3 weeks on it developed rash, quit taking it 2 weeks ago still have rash. Endo does not know what it is...will see dermatologist this week. I am supposed to start moving forward with RAI...but i am unsure about it. My tests TSH--.007
T3--4.5
freeT4---1.43
Thyroid antibodies---2453
When the endo told me what the normal antibody range was I was shocked at how high mine are. I am overwhelmed..do nutritional supplements help? The RAI seems frightening...any advice would be appreciated. Thanks so much.


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## Lovlkn (Dec 20, 2009)

spurrier said:


> Hello! I'm new here...Diagnosed with Graves few months ago. Started Methimazole, after 3 weeks on it developed rash, quit taking it 2 weeks ago still have rash. Endo does not know what it is...will see dermatologist this week. I am supposed to start moving forward with RAI...but i am unsure about it. My tests TSH--.007
> T3--4.5
> freeT4---1.43
> Thyroid antibodies---2453
> When the endo told me what the normal antibody range was I was shocked at how high mine are. I am overwhelmed..do nutritional supplements help? The RAI seems frightening...any advice would be appreciated. Thanks so much.


Are you taking antihistamines? You may have had an allergic reaction.

What was your initial dosage?

What other tests have you had run and can you please post ranges?


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## spurrier (Aug 14, 2011)

I called endos office to get my levels after browsing this forum..I thought ranges were universal..normal ranges or parameters, if that makes sense. I will get a print out of my full lab results. I am so desperate for info that I do not even care how uninformed and clueless I must sound. My endo does not give me any real information...nothing. I feel lost and confused. Thank you for your response. Oh..she had me on 10 milligrams to start. Thanks...I will get some more information on my ranges and results.


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## Andros (Aug 26, 2009)

spurrier said:


> Hello! I'm new here...Diagnosed with Graves few months ago. Started Methimazole, after 3 weeks on it developed rash, quit taking it 2 weeks ago still have rash. Endo does not know what it is...will see dermatologist this week. I am supposed to start moving forward with RAI...but i am unsure about it. My tests TSH--.007
> T3--4.5
> freeT4---1.43
> Thyroid antibodies---2453
> When the endo told me what the normal antibody range was I was shocked at how high mine are. I am overwhelmed..do nutritional supplements help? The RAI seems frightening...any advice would be appreciated. Thanks so much.


Spurrier, welcome!!

Have you had RAIU (radioactive uptake scan?) I do recommend that you do that before you go into RAI as you need to find out if you have cancer. Hopefully that would not be the case but if you do, that would drastically change your treatment options.

With antibodies that high; I am suspicious. I presume you are referring to TPO Ab?

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

Have you had a Thyroglobulin test?

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

And my observation combined with personal experience shows that people who are in the advanced stage of hyper, really do not respond to anti-thyroid meds to well and do in fact break out in a horrible itchy rash and hives.

How long have you been hyper?

What criteria did your doctor use to diagnose Graves'?










In any case, it is my humble opinion that RAIU is necessary before chosing a permanent solution and I am in favor of getting rid of the thyroid; that is for sure. (not a doctor; just personal experience)

Second opinions are always good also.


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## spurrier (Aug 14, 2011)

Hello! The only other test I wrote down the result for is Immunoglobulin, I think it is TSI, my result was a 437 and she said 0-139 is the normal range. I have an appontment for a Thyroid Scan/Uptake, before any RAI. I did not realize i had any Thyroid issues at all until a routine blood test a few months ago, my Doctor sent me to an endo and she told me I had Graves Disease based on my lab results. I realize now that I have had thyroid issues for at least 10 years. I am 46 years old...I have not had a period in 6 years, started getting hot flashes...my dr. said it was premature menopause.Swollen neck and cheek area...gain weight at the drop of a hat. Lots of symptoms. I appreciate your help and advice. I am trying to learn as much as I can right now...Thanks.


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## Andros (Aug 26, 2009)

spurrier said:


> Hello! The only other test I wrote down the result for is Immunoglobulin, I think it is TSI, my result was a 437 and she said 0-139 is the normal range. I have an appontment for a Thyroid Scan/Uptake, before any RAI. I did not realize i had any Thyroid issues at all until a routine blood test a few months ago, my Doctor sent me to an endo and she told me I had Graves Disease based on my lab results. I realize now that I have had thyroid issues for at least 10 years. I am 46 years old...I have not had a period in 6 years, started getting hot flashes...my dr. said it was premature menopause.Swollen neck and cheek area...gain weight at the drop of a hat. Lots of symptoms. I appreciate your help and advice. I am trying to learn as much as I can right now...Thanks.


That range for TSI is only to establish a baseline and detect movement. You should have no TSI.

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

If your cheek and neck are swollen, you definitely should have RAIU (radioactive uptake scan) and I would not dilly dally either. 
When is your RAIU set up for?

Thyroid cancer symptoms
http://www.cityofhope.org/patient_care/treatments/thyroid-cancer/Pages/symptoms.aspx

Oh, I feel so bad for you that you have not been diagnosed sooner. Please do get that RAIU set up and let us know when.

Many of us gained weight w/hyperthyroid, believe that or not. Symptoms can and do cross over.


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## spurrier (Aug 14, 2011)

Thank you for your help. my RAIU is scheduled for next Tues and Wed, She said that it is a 3 appointment process. I appreciate your help! I am a little freaked out about everything right now. Thanks again.


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## Andros (Aug 26, 2009)

spurrier said:


> Thank you for your help. my RAIU is scheduled for next Tues and Wed, She said that it is a 3 appointment process. I appreciate your help! I am a little freaked out about everything right now. Thanks again.


As to be expected but do know that many of us here, myself included will keep you in our thoughts and prayers.

When you say next; you mean next week? Aug. 23 and 24?


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## Shadowlands (Aug 19, 2011)

Hi, I too was diagnosed with Graves Disease last January, due to my allergies it was advised that I not take Methimazole. I was put on beta-blockers because I went from low heart beat to rapid heart beat. I ended up having RAI in Feb, because I was at risk of having a stroke, the beta-blockers weren't working.

RAI seems scary, but I had the lowest possible RAI dose and went hypothyroid 10-12 weeks later. I now take a form of Levothyroxine (thyroid hormone replacement therapy) everyday. The RAI isn't as scary as everyone makes it out to be and I now feel like my old self without any side effects, except for mild hair loss which usually happens the first few months of taking Levothyroxine. You do however tend to feel awful until your doctor finds the correct dosage that your body needs when taking the thyroid replacement medication and it took me about 8-10 weeks to find the dosage that works best for me. I'm unusually sensitive so they had to slowly make adjustments, but I am perfectly fine now and will only have to see the doctor 1 or 2 times a year. I know several people who have had RAI therapy and are perfectly fine without any side effects. It will get better!


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## Andros (Aug 26, 2009)

Shadowlands said:


> Hi, I too was diagnosed with Graves Disease last January, due to my allergies it was advised that I not take Methimazole. I was put on beta-blockers because I went from low heart beat to rapid heart beat. I ended up having RAI in Feb, because I was at risk of having a stroke, the beta-blockers weren't working.
> 
> RAI seems scary, but I had the lowest possible RAI dose and went hypothyroid 10-12 weeks later. I now take a form of Levothyroxine (thyroid hormone replacement therapy) everyday. The RAI isn't as scary as everyone makes it out to be and I now feel like my old self without any side effects, except for mild hair loss which usually happens the first few months of taking Levothyroxine. You do however tend to feel awful until your doctor finds the correct dosage that your body needs when taking the thyroid replacement medication and it took me about 8-10 weeks to find the dosage that works best for me. I'm unusually sensitive so they had to slowly make adjustments, but I am perfectly fine now and will only have to see the doctor 1 or 2 times a year. I know several people who have had RAI therapy and are perfectly fine without any side effects. It will get better!


Welcome to the board!










And.......................thank you for the soothing reassuring words. Many need encouragement!

What thyroxine replacement are you on and how much per day? Sorry you had to go through this.


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## Shadowlands (Aug 19, 2011)

I am on a new med called Tirosint, a gel capsule that is similar to Synthroid, but is dye and additive free. I alternate with 75 mcg every other day and 50 mcg on the other days, strange, but this works great for me.


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## Andros (Aug 26, 2009)

Shadowlands said:


> I am on a new med called Tirosint, a gel capsule that is similar to Synthroid, but is dye and additive free. I alternate with 75 mcg every other day and 50 mcg on the other days, strange, but this works great for me.


Yes; that is fairly new on the market, is it not? I am so glad that it is working well for you. How long have you been on it?

Are your eyes okay?


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## Shadowlands (Aug 19, 2011)

I've been on Tirosint about three months. It is new to the market, my doctor said it is basically the same medicine as Synthroid, just minus the extra additives and dyes. I never had any of the eye problems, just a rapid heart beat and tremors in my hand.


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## patient50313 (Aug 27, 2011)

Do you consume aspartame or any other artificial sweetner?

I had read that some doctors believe that aspartame is the cause of a lot of auto-immune diseases and neurological disorders. So, I thought I'd eliminate it from my diet to see if it would help me.

I was taking 30 mg of methimazole a day for my hyperthyroid and when I stopped consuming aspartame my symptoms improved DRAMATICALLY in just a manner of a few days and I could no longer tolerate my thyroid medicine, so I stopped taking it. I now take a dietary supplement called L-Carnitine which gives you the same results as methimazole without all the side affects. Once I started taking it my hair stopped falling out and now I rarely find hair in the shower.

I would start there and you might be surprised you may not need any medication.

I continue to follow-up with my Endo Dr who recommends that I stay on the L-Carnitine since it's working. He says it's perfectly safe to take, so I've been taking 500 mg in the morning and 500 mg at bedtime.

Hope this works for you as well as it has for me. Good luck to you.


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## Shadowlands (Aug 19, 2011)

I'm actually allergic to artificial sweetners, my condition is genetic, grandparents, sister and cousin either had graves or hashi's. I had RAI therapy so outside of the mild hair loss I feel great. I'm allergic to most meds so my options were limited to surgery or RAI. My grandfather had surgery and the nerve that controls swallowing was nicked and he could no longer swallow after his thyroid was removed and ended up on a feeding tube, so I did not explore the surgery route.


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