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Old 09-13-2011, 02:52 AM   #1
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Talking Iodine therapy or not....please help

Hi Everyone,

I have been suffering with symptoms of Graves Disease for 6 months now with little improvement. My endo keeps suggesting that I have RAI therapy and be done with it, however my eye site has been affected poorly and I hear the RAI can make this worse? Any ideas would be helpful.

Thanks

 
Old 09-13-2011, 08:02 AM   #2
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Re: Iodine therapy or not....please help

Quote:
Originally Posted by Brooketown View Post
My endo keeps suggesting that I have RAI therapy and be done with it...
He's telling you this because he wants to "be done with it".

Your eye disease might indeed be made much worse by the RAI. Other risks are: pretibial myxedema (skin involvement), increased thyroid hormone levels or even thyroid storm, loss of salivary gland function, and/or increased risk of various cancers at a future date.

How are you being treated now? If properly dosed, anti-thyroid medicines are your best shot at remission. Trouble is, most endos do not dose them properly and push RAI when it's they don't know how to get the meds right.

Do your research.

 
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Old 09-13-2011, 01:43 PM   #3
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Re: Iodine therapy or not....please help

Ditto! On Midwest.

Search for threads by mkgbrook keywords thyroid care and concerns RAI versus thyroidectomy. This ran about two years back but it is packed full of information.

If it was me and the thyroid needed to be taken our of the picture I would insist on a thyroidectomy. Why? My family has had BAD experiences with RAI ablAtion that resulted in a need for thyroidectomies anyway.

I wish you the care YOU deserve not the care your MD wants to provide.

MG
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Old 09-13-2011, 02:28 PM   #4
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Re: Iodine therapy or not....please help

Hey thanks for the reply. I am currently taking tapazole 20 mg a day and 60 mg of beta blockers. I should have mentioned in the original post that I'm seeking to become pregnant ASAP once this thyroid business sorts itself out, so we are looking at the best and safest way to do that pre-baby.

 
Old 09-13-2011, 09:27 PM   #5
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Re: Iodine therapy or not....please help

The RAI is a definite NO NO. You have to wait OVER TWO YEARS POST RAI to get pregnant or there are risks to your fetal development. In addition RAI can have a lot of other system impacts.

Now anti thyroid meds are also not safe during pregnancy. What does that level you since your Graves had not went into remission? Well a thyroidectomy and then treating the resultant hypoT may be your only option. You need to talk to a maternal fetal medicine MD about your options and how that would effect the health of a fetus.

I wish I had more information for you.
MG
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Old 09-14-2011, 05:54 AM   #6
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Re: Iodine therapy or not....please help

Quote:
Originally Posted by mkgbrook View Post
The RAI is a definite NO NO. You have to wait OVER TWO YEARS POST RAI to get pregnant or there are risks to your fetal development. In addition RAI can have a lot of other system impacts.

Now anti thyroid meds are also not safe during pregnancy. What does that level you since your Graves had not went into remission? Well a thyroidectomy and then treating the resultant hypoT may be your only option. You need to talk to a maternal fetal medicine MD about your options and how that would effect the health of a fetus.

I wish I had more information for you.
MG
What is this maternal fetal medicine MD that you talk about I have never heard of that in Canada??? Thanks again for the wonderful help

 
Old 09-14-2011, 07:01 AM   #7
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Re: Iodine therapy or not....please help

MFMs are like high risk OBs. They manage thyroid, diabetic, and more patients through their pregnancy. They basically specialize in managing difficult pregnancies. Most of ours are associated with major hospitals. I saw mine once a month until my final trimester then I saw him every 2 weeks.
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Old 09-14-2011, 05:54 PM   #8
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Quote:
Originally Posted by mkgbrook View Post
MFMs are like high risk OBs. They manage thyroid, diabetic, and more patients through their pregnancy. They basically specialize in managing difficult pregnancies. Most of ours are associated with major hospitals. I saw mine once a month until my final trimester then I saw him every 2 weeks.
May I ask what treatment you were on prior to and during your pregnancy, did anything affect your baby during or after pregnancy?

Thanks

 
Old 09-15-2011, 09:43 AM   #9
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Re: Iodine therapy or not....please help

Before pregnancy I was under going treatment for Hashimoto's induced hypoT. Long term untreated hypoT induced Hypoadrenalism. Insulin resistance. Reactive hypoglycemia. Acid reflux. Allergies. Rosacea. Migraines. Vitamin deficiencies (D,B6&12, Ca, Mg).... I think that covers it... HASHIMOTOs induced POTS symptoms and sleep apnea.

How were these things treated? After finding the right MD.....
zyrtec for allergies.
nasonex seasonally.

Acid reflux had to swap to omeprozol because other treatments are not safe to take during pregnancy.

I was getting thyroid adjustments in 4-5 week intervals. After pregnancy these went to 2 wk intervals.

Hypoadrenalism 20 mg a day. During pregnancy I had periods of time I needed 25 mg. Back on 20 again.

Reactive hypoglycemia I had a nutritionist I saw and managed my diet with increased fiber and sugar cut backs. Sniff, me miss my sweets! During pregnancy my MFM had an RN diabetes counsilor that I had to send my food logs and 5 x a day blood sugar results too.

Insulin resistance was on 1000 of metformin. Pregnancy drove me to 2000. I am still on 2000 of metformin.

Heart issues were controlled by the use of a short lived heart med known as pindolol. My heart was monitored by my cardiologist because fluxing thyroid hormones were doing a number on me.

Supplemented all my vitamin issues. Tested my levels every four weeks while pregnant.
Nothing for the migraines other than treating my thyroid and mineral deficiencies.

General care given my hypoT stare was to increase my T4 by 25 mcg upon detection of pregnancy. Then every two weeks for the next two months I went in to my OB for blood draw and adjustment. My MFM told her to get me above 60% of normal range.

I had ultrasounds once a month until my final trimester when they were doing them every two weeks.

My Endo did a US of my thyroid in thexsecond trimester to make sure my single nodule was stable in pregnancy hormone hades.

My daughter received targeted ultra sounds of her Heart and thyroid in the second trimester and third trimester every 4 weeks..,

My girl was born at 35 weeks, 8 lbs, with only an inherited grade 3 heart murmur. I have the exact same thing.

I required continued thyroid hormone resting post pregnancy. Every 4 weeks my levels were checked and adjusted.

Does this help? Your MD should work with you to monitor your care. It can be an intensive time consuming process.

MG
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Old 09-15-2011, 05:07 PM   #10
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Talking Re: Iodine therapy or not....please help

MG,

Thank you so much for all of the amazing helpful information. I feel terrible that you went through all of that, and we have some similarities for sure. I am also insulin resistant and on metformin interesting. Again I thank you for your time and information, greatly appreciated!!

 
Old 09-15-2011, 10:31 PM   #11
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Re: Iodine therapy or not....please help

i had graves and i went on propytherucel...oooh i know spelling is wrong! i still wanted to make a baby even though i had no boyfriend at time ;o i think that drug is better if you want baby? tapazole is more harsh??? DO research!
Yes they tell u if you are allergic they will stop pills and radiate you! I FOUND OUT you just need to lower your dose! I ate kale cabbage and brazil nuts and after every blood test would cut my pill, lower dose then the doc would call the next day and say lower dose and i smiled over phone and said i already did!
i stayed on pills for about 15 months and finally doc said quit taking cause i had whittled it down to not many milligrams! I have been perfect blood tests for 8 yrs!
gosh i always post when i am tired sorry for bad penmanship but info is all genuine and from my experience!

 
Old 09-16-2011, 08:10 AM   #12
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Re: Iodine therapy or not....please help

Actually my second pregnancy with my daughter was MUCH better. The only really bad part was trying to bleed out during my c-section.

With my first pregnancy I new things were wrong. I was only diagnosed with allergies and hormonal induced migraines. I requested my MD run a full thyroid panel based on my symptoms and my mom and her four sisters having Hashimoto's and Graves. I was young, innocent and trusting of all MDs at this time. Well she didn't test me until after my son was born. And then she only ran a TSH! I was fine... I just had to stay in the hospitAl for a month post delivery.

It wasn't until I was burned by this OB and moved that I realized how bad my initial care was... This second time I was a living pin cushion, but my MDs were able to react immediately and adjust to my own needs and the needs of my daughter.

I hope that someone takes care of you just as closely. Micromanaging a thyroidettes pregnancy is grade A care in my opinion.
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