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#1 March 18, 2012 10:24:43

swolfgang
Registered: 2012-03-18
Posts: 3
Profile  

New with GD, lots of questions? Pills or RAI

HI may name is Sherry and I was just diagnosed with graves disease a few days ago, the doc gave me the 3 choices, and initially I went with the RAI but have been looking thins up and I am not sure. I am 44 years old, basically healthy, run 3 to 4 times a week, want to lose 10 more pounds weight 143, started out last year at 165, and I swim and lift weights, so I am concerned how having this procedure done will effect my performance, I am training for a trialathon and don't want to slow down. I work as a physical therapist assistant and lead a very busy life style, although I get very tired, that was my main complain when I went to my doc and I have high anxiety and trouble sleeping, and he said my TSH was 0.005 so he made me an appt with an endo. She did US, states I have some small nodules but nothing for concern, my thyroid is small, then had the uptake and scan and and more blood test, my TSH was 0.004, T3 4.79 and T4 1.59 and other test that showed graves disease. My endo wants to do the RAI as soon as possible and I guess my question was is this a good idea or should I try the pills first, I am aware their are side effects with both, but I don't know which way to go. Any words of wisdom would help…thanks


Sherry

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#2 March 18, 2012 13:51:13

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3489
Profile  

New with GD, lots of questions? Pills or RAI

Hello and welcome - I'm sorry to hear about your diagnosis, but am glad that you found us. We had a poster here a couple of years ago who was a runner and did RAI – you might use the “search posts” feature to search for runlacie. (I believe that was her screen name).

A couple of notes on RAI. First, if you have any eye involvement, you might wish to consult with an opthalmologist, as the latest guidance from the American Association of Clinical Endocrinologists and the American Thyroid Association notes that RAI is a “risk factor” for progression of the eye disease. This does not mean that everyone who has RAI experiences this issue, but there is an increased risk that patients need to be aware of.

Also, some docs promote RAI as a “quick fix” for hyperthyroidism, when in reality, it takes some time for the RAI to do its work and then for you to find the “sweet spot” of replacement hormone that will get you to feeling well again.

As you mentioned, all three treatment options (RAI, anti-thyroid drugs, surgery) do have unique risks and benefits, so you definitely want to do your research and be comfortable with your final decision.

Please check back and let us know how you are doing!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

Edited Kimberly (March 18, 2012 13:51:36)

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#3 March 18, 2012 14:59:29

rdial
Registered: 2011-12-17
Posts: 2
Profile  

New with GD, lots of questions? Pills or RAI

swolfgang
Hi i am a 48 yr old male. I have been dealing with hyperthyroidism since 2008. My endo recommended RAI so i took it within 3 month follow up i got real sick and had to go back to him he recommended surgery so surgeon did x-rays and did not want to do surgery so he recommends me to a doctor at Duke Medical Center she gives me RAI 2 more times as of today 03-18-2012 i am in worser condition than 2008 my body is trying to go hypo, i have no energy, severe constipation,(thats with a daily laxative), terrible blurry vision, and my bones are thinning my personal opinion.Worst damn decision i ever made was RAI but i do understand everyones body is different plz plz do research and may god bless everyone with this disease.
p.s. i am from laurinburg nc worked same job for 23yrs and i am afraid this disease is going to end up putting me out of work permantly. g/l

Edited Kimberly (March 19, 2012 09:46:41)

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#4 March 18, 2012 15:14:24

swolfgang
Registered: 2012-03-18
Posts: 3
Profile  

New with GD, lots of questions? Pills or RAI

rdial,
Hi thanks for your info, I am sorry that you are not doing so well and that the RAI did not work for you. What your TSH levels before the RAI and how did you feel before you had it done. Are you taking meds now and did you have eye problems before the RAI? I live in the fayetteville NC area, so not far from you, I am seeing an endo in Pinehurst NC. but am thinking of getting a second opinion, probably from the Raleigh Area. I know If I get the RAI my body will go hypo, but I thought it was more treatable than hyper? Am I wrong? Also have you gained weight. Its very frustrating…..I don't know what to do….

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#5 March 18, 2012 15:19:59

swolfgang
Registered: 2012-03-18
Posts: 3
Profile  

New with GD, lots of questions? Pills or RAI

Kimberly,
Thanks for the info you provided, As of now I do not have any eye problems that I am aware of, should I have my eyes checked before I have the RAI done if I decide to have it done? I know you are not a doctor but do you think my levels are totally out of wack? I know my anxiety is getting worse, but I am not losing weight, but seem to be short tempered…..thanks for any info….

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#6 March 18, 2012 16:17:59

NLBatten
From: Dallas, TX
Registered: 2012-02-22
Posts: 47
Profile  

New with GD, lots of questions? Pills or RAI

Hi Sherry. I was diagnosed with Graves on Feb. 21 and did RAI on Feb. 24. I am same age as you and had similar numbers. (.008 TSH (range .3-5.1)/ Free T4 2.06 (range .73 - 1.95/ Total T3 215.47 (range 90-200) ). When I had the uptake test, they said the result was 53% uptake and that is what made my endo say Graves (the radiologist who adminstered the RAI told me over 50%, they considered to be Graves as 10%-20% was normal, 25% was considered high so 50% was way too high). I did not have antibody or any other test.

My decision to do RAI was very quick, but I read some info that Kimberly posted for me and based on those and my preferences, decided RAI was the way to go for me. The reason for me was 1) surgery just seemed too drastic / risky if there were other options and I have had a lot of other health issues and 4 surgeries in the last 18 months, so I didn't want another surgery. 2) the meds seemed to me to be a temporary fix and I wanted a permanent solution. I have been sick and miserable too long. I have noticed lots of folks on this board have very strong opinions one way or the other, but I can tell you, that you are the only one that can answer that question. When I read through these boards, I sometimes question making the decision for RAI so quickly, but given the other options, I don't think I would have changed my mind. I currently do not have any eye involvement either, so I am hoping that I don't and will certainly keep an eye on it. I haven't found any info about strongly one way or the other about seeing an eye dr to be sure there are no issues, but honestly from the way folks describe TED, I think you would know (and hope I would) if there were some eye issues.

If it helps, I have (so far) had no side effects from RAI. I HAVE gained 10 lbs which I believe is related to the beta-blocker Atenolol, but I am also VERY overweight and not active too begin with so I can gain weight very easily and the Atenolol brought my already messed up metabolism to a screaching halt. The Atenolol did make me feel much better right away though, so it was worth it for the temporary fix. I go back for my first follow up this Friday, so I am hoping (and will ask) if I can come off the Atenolol or switch to another beta blocker if she thinks I still need it.

Below are the links Kimberly gave me that helped me make an informed decision:

ATA/AACE Guidance:
http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf [thyroidguidelines.net]

“Different Strokes” article:


If those links don't work, search for my post from Feb. 22 titled “Just diagnosed w/ Graves - need some reassurance” and you will see Kimberly's response to me with those links and lots of other helpful comments. I have found the folks on here to be extremely helpful.

You can always try the meds first and see how it works for you and opt for RAI later if it doesn't work for you. You just need to weigh the pros and cons for your personal situation. Good Luck with your decision and let us know what you decide.

Nancy
[gdatf.org]

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#7 March 19, 2012 09:54:30

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3489
Profile  

New with GD, lots of questions? Pills or RAI

@Sherry - I'm not qualified to comment on anyone's levels; this would be a discussion to have with your endo. Also, he/she might be able to provide some guidance as to whether an appointment with an ophthalmologist might be helpful. In general, mild symptoms of Thyroid Eye Disease can include dryness, swelling, excessive tearing, and a gritty sensation in the eyes. More serious issues can include a “bulging” of the eyes (proptosis) and double vision. In severe cases, patients can end up with compression of the optic nerve, which requires emergency surgery to correct. Difficulty in seeing colors can be a sign of optic nerve compression – for example, something that you *know* is red starts to look more orange or brown.

@rdial - Thanks for sharing your story. I'm sorry to hear that you have had such a negative experience. (I edited your post to remove the individual doctor's name, as this is a public forum). Do you feel your current doc is working with you to get you some relief – and to give you your life back? If not, a second opinion might be helpful. Referral sites for endocrinologists are available at www.aace.com and www.thyroid.org. On the AACE site, be sure and select the specialty “thyroid dysfunction.” The Foundation has also just launched a physician registry of doctors who have told us they have particular expertise in Graves’. To access the registry, go to the home page at www.gdatf.org and click on “physician registry” in the box on the top right-hand side of the screen. Because we are just getting started, we might not yet have a lot of listings in your part of the country.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

Edited Kimberly (March 19, 2012 09:54:52)

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#8 March 19, 2012 12:47:40

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1750
Profile  

New with GD, lots of questions? Pills or RAI

To rdial,
Have you considered seeing another surgeon, consulting with that person about the pros and cons for you in your situation? Probably a good idea for you to see a neuro opthalmologist for a baseline workup on your vision. There is definitely evidence of the possibility of the onset of TED thyroid eye disease after RAI, and you have had it three times.

I am so sorry that you feel so crappy, and of course your work situation matters a lot. Maybe you need a new endo, too? Are they compassionate are they being vigilant about your symptoms, and trying to help you?
Shirley


TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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