# Not sure what direction to go



## CMantz (Jun 4, 2010)

I am new to this board. But unfortunately not new to GD.

Orig diag 1998. Symptoms were elevated heart rate, weight loss, slight TED issues. Endo was pushing RAI but we moved soon after diag and I never really continued treatment.

Then in 2006 I went to a new doctor for general checkup. At the time I was going to the gym regularly and my heart rate would go very high during cardio but then recover quickly. He wanted to run bloodwork and sure enough TSH was low/T4 was high. I talked him into trying ATDs. I seemed to respond quickly to the MMI. I honestly can't remember why I quit going to him. I know...bad!

Which brings me to present...I went to a new GP in April for depression. I figured it was due to some very stressful events last year. (but now am wondering if it is really a result of GD). While there I requested a blood panel primarily to see where I was regarding my thyroid. My TSH came back <.005. My T4 was high as well. She referred me to an endo who I saw finally last week.

Before seeing him I convinced myself that I needed to get this thyroid issue resolved..primarily because my husband had neck surgery this year so our deductible ($6k) is satisfied for the year. But after going to the endo I am really scared. He told me that I am going to feel different and I will gain weight. I think I have had this for so long I am used to the hyper symptoms. I don't even notice them. But he wants me to do something....either RAI or surgery.

I don't have the results of my blood test last week but again my TSH was <.005 and my FT4 was over 4.

So, I have a decision to make...
RAI - which I am not crazy about doing (especially listening to members of another group I belong too) and I don't want to take the chance that I will have to repeat it although this endo says that is rare.
Surgery - which would be quicker but then again it is SURGERY and I wonder if that is really necessary when there is a non-invasive option (RAI)
ATDs (if I can talk him into trying) - which I responded to in the past but then again, I don't want to take the risk of it not working and then next year having to choose RAI or surgery and have to pay another deductible.

UGH! I guess I was really hoping that I would go see him and he would say "you don't even realize how bad you feel...you are going to feel so much better after..." etc. I am so terrified that I am going to do something irreversible and end up feeling worse.

I am scheduled for RAIU on Wens. At this point I figure I will do that test and when the results come back I will meet with the endo again and hopefully I can decide what to do.

Although I would like to ignore this issue and hope it would go away, I realize that is not going to happen. I know I have to do something...I just can't decide what to do...

Thanks in advance for any insight and advice.
Chris


----------



## GD Women (Mar 5, 2007)

Hi!

Well that is a tough decision you'll have to make if you want to say healthy.

RAIU, you'll have to swallow a dose of radioactive iodine either taken as a capsule or a fluid 4 to 24 hours before the test. Iodine has little or no taste.
So what is the big deal in just a little more of a dose doing RAI.

Don't listen to others on different forums. So many out there are anti-RAI radicals. They blame everything on RAI. All their ills and more.

I did RAI 13 yrs ago and I am doing fine as far as RAI treatment goes. I only gained the weight back or I should say half the weight that I lost due to hyperthyroidism. Now with dieting I have lost down to my hyperthyroid pre RAI treatment weight.

People are braver than I, who choses surgery for I will not have surgery unless my life depended on it. I wake up and it horrible!

Any way its your choice and no one here is going to ridicule you for which treatment option you chose. You make your choice and we back you with support and kindness.

Don't stress over this - stress is not good for thyroid. Just take your time within reason and make your choice. Neither one after treatment is a big deal.

Good luck - keep us up dated and if you have any questions some one here will answer or try to.


----------



## hillaryedrn (Dec 14, 2009)

This is a difficult, and personal, decision. People will tell your their personal reasons why they prefer one over the other. I really think this is bad for you. What works for one person may not work for another. Some people who are anti-RAI are going to terrorize you with stories of that, while people who are anti-surgery are going to scare you about that. What it is is the fear of the unknown. Just do your best to educate yourself from RELIABLE sources (not people venting on boards) on both therapy options and then make your own decision. We will support you whichever you choose!!!


----------



## Debbie from Milwaukee (Apr 18, 2010)

Chris:
I can relate to the agony of your decision. 3 years ago my 17 year old daughter was diagnosed with Grave's disease. At first the only option that the docs at the clinic offered was Methimizole. When I read research that showed that this therapy could take 12-18 months and then have only a 20-30% chance of being successful, I was livid! I researched what I could about RAI and found that for young people, the less time the thyroid was in distress, the greater the chance that the person could avoid future thyroid cancer. The choice of RAI seemed the best, and the docs agreed. I asked them why they didn't present it as an option initially, and they said they were "extremely conservative with treatment of minors" (translation: they need to cover their butts, in my opinion). It was my understanding at the time from the research that surgery would only be indicated if there was a goiter or cancer.

My daughter was declared to have balanced thyroid function at .150 levothyroxine just 1 year after RAI. She appeared to be doing well...until this past December. She has attended an art school in Philadelphia this past year (delayed by a year due to major jaw surgery last year). To make a long story short, various emotional concerns landed her in 2 psychiatric hospitals (one in Philly and other here in Milwaukee). However, we finally have her seeing a thyroid specialty doc who has both an M.D. as well as an O.D. in integrative medicine. We don't have the blood tests and scans back yet, but the primary conclusion is that our daughter was unable to convert the standard T4 (levothyroxine meds) into usable T3 for her body. Whether that is from an inherant autoimmune problem or something else, it turned into a *REALLY BIG *problem! It is also suspected that she has adrenal insufficiency, which means she spends big blocks of time just lying around. Even before the tests are back, her new thyroid doc has prescribed a thyroid med that *has* T3 (as well as T1 and T2) in it. BTW, some people in another forum mention that autoimmune conditions often come in 3s. The new doc also suspects gluten intolerance as well as autoimmune adrenal insufficiency. I am also pushing for my daughter to be tested for antibodies for Hashimoto's, because I don't think they really tested for that when she was 17.

As far as your decision, I think you need to apply the research to your specific situation. You *DO* have to do something to halt your thyroid function, because Grave's is an autoimmune condition that nothing can change. Since none of us has a crystal ball, the best you can do is to go in the direction that gives you the best odds. You also can insist with this new endo doc (as well as any future docs) that when you have blood tests that they always test for free T3 and free T4. These are the 2 critical tests that can show in the future (after your Grave's treatment) if you are converting T4 to T3. Apparently many, many docs (even endo docs) don't really understand this lack of conversion problem, and typically just look at the TSH test (which may not give an accurage reading).

I wish you well as you do to see the endo for a consultation about your treatment options. As long as you go armed with plenty of research and questions how it relates to you, you are managing as well as possible in a tough situation. Good luck and God bless you in your decision!


----------



## CMantz (Jun 4, 2010)

Thank you all for your input.

It is definitely a fear of the unknown for me. I KNOW how I feel now. I have lived it for many years. I don't know how I will feel after treatment. The possibility of being scares me and I don't want to have to fight with a doctor the rest of my life to feel good.


----------



## Lovlkn (Dec 20, 2009)

CMantz said:


> Thank you all for your input.
> 
> It is definitely a fear of the unknown for me. I KNOW how I feel now. I have lived it for many years. I don't know how I will feel after treatment. The possibility of being scares me and I don't want to have to fight with a doctor the rest of my life to feel good.





> He told me that I am going to feel different and I will gain weight. I think I have had this for so long I am used to the hyper symptoms. I don't even notice them. But he wants me to do something....either RAI or surgery.


Hi Chris,

I had the same fears - going onto the anti thyroid medication made a huge difference to the positive in my life - I was out of control with my Graves. Do some research and pick what you most comfortable with and you do have 3 choices, anti thyroid meds, RAI or surgery - don't let your doctor rush you into anything.

I surfed the web and convinced myself I could get myself into remission but after 4.5 years choose a total surgical removal of my thyroid and have no regret. I gained 5 lbs going onto anti thyroid medication over the 4.5 years.

One advantage to surgery over RAI is instant hypothyroid and usually an easier road to stabilizing on replacement. With RAI many times the thyroid has a much slower decline before it becomes non functioning thus causing many changes in replacement meds. Sometimes the one dose does not work and additional doses are required prolonging the ablation process - with surgery it all comes out at once.

Take your time and make an informed decision.


----------



## CMantz (Jun 4, 2010)

Lovlkn
Thanks for the info especially the comment about the advantage of surgery over RAI. I was thinking that RAI would be easier on my body as the decline into hypo would be more gradual and therefore my body would have time to adjust. But your comment makes sense.

Chris


----------



## Debbie from Milwaukee (Apr 18, 2010)

Chris:

Another thing: whichever way you go to kill your thyroid, do your research also about the best combo of meds to take post treatment. My daughter is now starting out on Armour meds now, but I don't know if that is what she will ultimately stay with. The key is that apparently many people are unable to convert T4 (standard Synthroid or Levothyroxine) to usable T3 after your thyroid is dead. This has caused my daughter a whole host of anguish for the last 6 months, and the road out of this conversion hell seems pretty long. Her andrenals seem to be affected as well (although final tests and scans are in process). So, both to you and any other autoimmune Graves person out there: don't settle for "standard" thyroid supplement following your Graves' treatment. Either the autoimmune condition or the mechanism of anti thyroid meds/ablation may prevent your body from doing that vital conversion.

Best of luck! Hope the comments here and the thoughts and prayers of everyone help you to the best decsion for your treatment.

- Debbie in Milwaukee


----------



## chopper (Mar 4, 2007)

Everyone converts T4 to T3 or we would all be dead. There is no correlation to autoimmune disease and conversion. Some of us convert a bit more quickly and efficiently than others and for those who do not convert as efficiently, the addition of pure T3 usually takes care of that very quickly.

You do have a lot of options available to you and remember that most of what you read on net is written because people have problems but this does not include the millions and millions of people who either get RAI or surgery every single day and forget about it from that point on. No problems so no reason to write to a board. I just want to make sure you get a balanced view because these boards do tend to be a little "doom and gloom" for newcomers who are just trying to sink their teeth into the disease. For most, it's a walk in the park.

For instance. My Uncle, 50-something year old. Loses like 100 pounds in 3 months for no reason. He goes to a doctor, gets tested and is found to have full blown Graves. 2 weeks later he sees an endo who puts him on anti-thyroid meds. He takes his pills, feels great, gained back 70 pounds and parties like a rock star. He never gave Graves another thought and he has absolutely no problems with it.


----------



## Andros (Aug 26, 2009)

CMantz said:


> I am new to this board. But unfortunately not new to GD.
> 
> Orig diag 1998. Symptoms were elevated heart rate, weight loss, slight TED issues. Endo was pushing RAI but we moved soon after diag and I never really continued treatment.
> 
> ...


I replied to your other post. Do let us know the results of the uptake.


----------

