[Irishgal]

in reply to: When to make the decision re RAI or more ATD #1062318

Hi there –

When I read your post I felt I couldn’t help by reply. My situation is a little different than yours in that I was never able to take ATD. Thus, I spent a good bit of time evaluating my options before ultimately deciding to have Radioactive Iodine Therapy. It was a tough call to make, but given that your systems are in overdrive which places a lot of stress on your organs and heart function you have to think long term.

Living outside of Washington DC, I have access to NIH and Hopkins is nearby in Baltimore MD. Thus, I exhausted my options prior to having the treatment. What I can share (and everyone’s experience is unique), is that Graves requires you to be your own advocate because so much of what is happening to you is internal. So, you have to push when you don’t feel you are getting the information you need.

Moreover, I believe your doctor is correct in that you should evaluate your options before having RAI. It may be that ultimately you can bring your thyroid function into control and can hold off on having RAI for a long time. However, the Chief of Endocrinology at Hopkins did share with me that typically in the studies they have performed ATD and the other drug usually only hold off a patient needing RAI. In other words, needing RAI is inevitable for the bulk of people diagnosed with Graves. I don’t have the statistics to prove that, but I have certainly talked to enough people since my diagnosis in May 2008 that I trust that statement.

Lastly and maybe most importantly, while you will get better I think it is better to see GD and recovery as a process. This is not to scare you but whatever treatment plan you choose be patient and prepared for recovery to take time. If you have RAI your GD symptoms will go away fairly quickly. Then you will have to wait as your thyroid function dies off. This was probably the most challenging part of the process for me because I went from feeling like a speedball to a turtle. I was incredibly hyper though. Again your experience will differ. While the time spent waiting for my thyroid function to cease was tough because I had low energy, fatigue, and gained weight, once the doctor started my on levoxyl (same thing as synthyroid), I started to feel like myself again. There were 2 months for me overall that were challenging, but that was by far better than spending another summer sweating, feeling like I was jumping out of my skin, and all the lovely symptoms of GD. Now I can honestly say I am glad I bit the bullet and suffered through 2 months of lethargy (but just lethargy, not aches and pains) and have my life back on track. I find now between working out, proper rest, a good diet, and ongoing monitoring of my TH4 etc. that my life belongs to me and not the dark passenger of GD.

Best of luck to you,

Beth

[Irishgal]

in reply to: Feel like I’m going nuts….advice please #1062391

Hi there –

I just joined the site tonight and came across your post and can relate. I too was experiencing a lot of anxiety seemingly out of nowhere in the Fall. I attributed some of it to the highs and lows of Graves. Ultimately it got to be unbearable so I had a full physical to rule out other variables. When everything came back fine, I felt I couldn’t wait any longer to do something. So, I asked my doctor to prescribe a low dose of zoloft. I had taken zoloft years ago when battling some depression and bad PMS, and it helped once it was built up in my system. Since January I have been taking 100mg of zoloft daily and finally felt more in control after about 30 days. Now if I could only get my levoxyl right… ” title=”Smile” />

My suggestion is give it a try in a low dose for a month and see if it helps. Serontin uptake inhibitors take time to build up in your system so in order to evaluate your progress you really have to take it for a month. I would also suggest keeping a journal to track your mental and emotional state daily after starting zoloft to see if there are any trends, etc. I have found by tracking my moods daily I feel a bit more in charge of the disease and have already noticed some trends, etc. There are definitely different times during the day when my energy and mood are terrible.

Anyhow, hang in there. You aren’t crazy but Graves Disease certainly has a way of making us all feel like we are because many of the symptoms aren’t visible.

Best of luck!

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