Treatment protocol - Graves

[cmantz2006]

I was diagosed with GD in 1998.  I had a RAI-U scan that confirmed GD.  I was put on PTU (not sure of the dosage) and was monitored in the anticipation that when I was "normal", I would have RAI treatment.  During this time, I moved from the area and discontinued my PTU and my symptoms went away.  I did see another doctor regarding RAI and his opinion was that my condition was not severe and that it was up to me if I wanted to have RAI.  I chose no.  I was not on any ATD after this point (approx. year1999-2000) and had NO symptoms of GD.

During a recent physical I mentioned to my current doctor that I had an elev. heart rate (170-180 bpm) during exercise but that it recovered quickly.  He did a TSH, FT4, and TSI
My results:
TSH - .041 (.49-4.67)
FT4 - 3.41 (.7-1.85)
TSI - 1.1

I was put on 50 mg Toprol XL and 5 mg Tapazole 3xday.  After one week on Tapazole my doctor called and wanted me to discontinue meds and have another uptake scan so that he can confirm GD diagnoses and rule out thyroiditis.  I refused test.

I was retested 6 wks later.
My results:
TSH - .03 (.49-4.67)
FT4 - 2.28 (.7-1.85)
FT3 - 3.80 (2.0-3.5)

I was told me continue on the same dosage of Tapazole and retest in 8 weeks.

My question is this...does this follow the ATD treatment protocol? My doctor has indicated that he does not know alot about GD, but is willing to work with me on the ATDs.  He is pushing for RAI, as he said that it is easier for him to control hypo patients with Synthyroid.  I have no interest in RAI so I need to educate myself and him on ATDs.

Thank you.

[2ndtwin]

My twin was diagonosed 10 years ago and I was just diagnosed.  What constitues mild Graves Disease.  My tsh was .015, my ft4 was 3.89, and my iodine 123 uptake was 73% at 4hours and 68% at 24.  I am not sure about the exact antiobody numbers but for thyroid antibodies my level was more than 3x normal.  I am taking PTU now and will see an endcrionolgist the end of the month to discuss treatment.  Twin had low doses of rai for 6 months.

[LAURIEL]

I think this is all overwhelming the high thyroid ,the hair loss the depression I  am really feeling discouraged. I feel sick all day long.  I am waiting for all the tests results to get done. the doctor I saw first got shot in his office so I have to start the process over again. It is really hard to get a appointment sooner than 2 weeks the they wont treat me until everything is done.  In the mean time my hair falling out and sick and have to wait for treatment.  I feel they need to change things on how to get faster treatment. I dont think doctors understand how sick you really feel . THanks for letting me vent alittle. Lauriel

[lookin4aclue]

I had RAI and have had to have treatment for TED(I had radiation, which really didn't work)I myself am not for nor against RAI, in my opionion, I myself don't think that it was the right choice for me to make, and wish I had not done it.  I like to think that telling people about what I went threw, and the things that are still happening to me, will educate them to make the proper choice for themselves.  I ask that they do research, and educate themselves in every area of RAI, ATD, and other treatments before making that choice, and the proper thing for them to do in the mean time is to take ATD so that they can make an educated choice, and one with a clear head.  If I had done that, then I may have made the proper choice for myself as well, but was wanting what the doctor made out to be the quickest fix(turns out it didn't fix anything for me).  So if you think that people are Anti RAI it's due to what they have learned and what they believe not because they base all the facts on just the words of people they know or the words of doctors but the fact that more than likely they have done research or have experenced themselves.  So go anti RAI people,and people who are not anti RAI, keep educating yourselves and others, it helps us all to make a choice of one or the other.  If there were not a side to every story how would we learn?

[Duchess47]

If RAI "kills" the thyroid.  What is the difference between that and total remova?  Around here, docs. won't totally remove unless cancerous.

[Duchess47]

I was diagnosed with Graves Disease 4 1/2 years ago.  I was on Tapezole for years.  In November 2005, I was told to come off of Meds., as I was in remission.  I have my blood checked every 4 weeks and so far so good.  Just wanted to get my 2 cents worth in because I never see anyone talking about the possibility of remission.

[NURSELPN]

Your welcome, Christine.

The best way to deal with this disease is to educate yourself on all options and possible side effects of each. Taking RAI is an individual decision & your right it is not to be taken lightly. Good for you, that you are weighing all your options & not rushing into a permanant treatment if there is a chance of remission with ATD's.

Even as a nurse. I certainally do not pretend to know everything about thyroid disease but I am only sharing my experience with RAI & I wished I would have known about ATD's before I took my that treatment. I've regretted not being able to try other options to treat my Graves. But they weren't mentioned or offered.

I did not mean my above post to be sarcastic in any way. I just wanted you to hear the other side of RAI & you can be the judge.
It's a permanant solution to what can be a temporary problem when other treatments are available. I'm not saying there isn't a time when RAI may not be needed...sometimes there is no other option but it's not the first line treatment in most cases.

Good Luck with the ATD's or whatever treatment you choose.....................May God Bless & Heal You, TJ

[NURSELPN]

Graves Lady,

By the way, I am not mean or an Anti-RAIer. I'm just a  Graves sufferer who is trying to share my experiences. I post very little & I don't appreciate being verbally attacked whenever I post just because I have a difference of opinion from yours.

Thank you for your time & God Bless you, TJ

[Mark Lupo, M.D.]

PTU is the med that is taken every 8hours -- tapazole is once daily for most cases (unless there is nausea or severe hyper needing more than 30mg/day).

Would recheck in 4-6 weeks at first to see how you are doing.

[cmantz2006]

Thank you for your input.  It is interesting that you say that I can take my Tap at one time.  Everything that I have read said to take in every 8 hour doses.  That is sometimes difficult.  I think I will try to take all 15mg at one time in the morning and see what my labs show next time.  Do you feel it is important to get labs sooner than 8 weeks based on my recent blood work, or should I just wait the 8 weeks like my doctor wants?  Thank you for your time.

[cmantz2006]

Thank you for all your opinions.  At this point I have chosen to take the ATD route for treatment.  That may change at some point down the road, but for right now RAI is not an option for me.  

My question was more directed at the dosage and testing schedule that my doctor is using and if it is appropriate based on my test results.

Thanks again and I look forward to hearing from Dr. Mark.  Thank you in advance.

Christine

[GravesLady]

No, I am one of many fortunate RAIers who are doing fine after RAI.  You don't hear from them because most when feeling well do not feel the need to post on forums. Don't get caught up on the Anti-RAI forums and Anti-RAIers, they can be down right mean when it comes to RAI treatment.

As far as the TED eye disease has no favorites in treatment including the use of Armour.  Plenty of ATDers have TED worse then most of us RAIers, you will find a few but they would have had the TED regardless. The site that has been mention by the former poster, you will find ATDers who have very bad cases of TED as well as perhaps one or two lonely RAIers. They all gather around this forum. So if you are an Anti-RAI these are the forums for you and you will fit right in.
TED has its own antibody separate from Thyroid Antibodies and is going to attack regardless if it so desires regardless of treatment, as many times as it want, and as often as it wants. Some say that RAI made their TED better. So don't let people fool you. I love the scare tact's on these Anit-RAI forums. There is a small percentage even of RAIers who ever get the real bad TED that these Anti-RAIers talk about.
I am not here to promote any treatment, this is your choice.  However I do get offensive when Anti-RAIers bring down my treatment choice for their own agenda. This happens way to often and way to many times.

Good Luck!

[Mark Lupo, M.D.]

Your have recurrent Graves Hyperthyroidism.  Tapazole can be dose once a day (3x/day not necessary, but take all three tabs -- 15mg - at once in am).  Given your hesitation to RAI (reasonable) I would treat with Tapazole for 12-18 months under guidance of a thyroid specialist -- be sure to monitor liver function and white blood count

[GravesLady]

My understanding from other ATDers test are done every 4 weeks to keep on top of the situation.  Some can go hypo very suddenly and you want to be winged from meds before this happens. I  know of several who almost went into coma and ended up in the ER.
The remission rates are variable, and relapses are frequent and remission is most likely to be achieved with mild hyperthyroidism and small goiters.
Antithyroid drug treatment is not without the risk of adverse reactions, including minor rashes and agranulocytosis (lack of white blood cells) and hepatitis.
Symptoms are fever or sore throat. Leukopenia, thrombocytopenia, and aplastic anemia (pancytopenia) may also occur. Headache, or general malaise.
Tapazole may cause hypoprothrombinemia and bleeding.
ATDs should be discontinued in the presence of agranulocytosis, aplastic anemia (pancytopenia), hepatitis, or exfoliative dermatitis.  Tapazole may cause hypoprothrombinemia and bleeding. You will need periodic test done  and probably Bone marrow function should be monitored.

Due to these issues and the fact that your doctor does not know that much about ATD treatment, I'd suggest  you go to a endocrinologists who treats many Graves' patient per year or a Thyroidologist.

Nothing wrong with RAI.  I did RAI 9 years ago and have no complaints.
Many clinical endocrinologists prefer an ablative dose of radioactive iodine while some prefer a smaller dose that would attempt to render the patient euthyroid. Ablative therapy with radioactive iodine yields quicker resolution of the hyperthyroidism than does small-dose therapy and thereby minimizes potential hyperthyroid-reoccurrences. Radioactive iodine therapy is safe, but most treated patients become hypothyroid and require lifelong thyroid replacement therapy.

It's just a matter of preference and life style on how fast you want to heal and get on with life and living it in good health.

Good Luck.

[NURSELPN]

cmantz2006,
Dr. Mark will be answering soon but in my opinion & I'm not a doctor..................
You are very wise in being leary of RAI. Ceck out this website, please! http://www.geocities.com/ibayoa/index.html
Graves Lady was one of the fortunate few who hasn't suffered after receiving from RAI. If you go to this forum, you will find others including me who have had alot of problems including the onset of thyroid eye disease after RAI. They will answer any question regarding the treament of hyperthyroidism & Graves disease.
http://mediboard.com/groupee/forums/a/frm/f/150103281
It's your decision but please make an informed one. Your future health depends on it.           God Bless U, TJ