[jiboosmom]

in reply to: RAI Scheduled for tomorrow #1062499

I just wanted to give everyone an update. I am 5 weeks out and had my blood drawn last week at four weeks out. My levels are almost normal! My TSH is still a little low, but that is the last thing to change. The other levels are within normal range (the high side of normal, but normal none the less). So it appears the iodine worked (and most likely still working)! I stopped my meds a month and a half ago, a week before the RAI, and I feel sooooooooo much better. For about two weeks, when I was off the meds, I felt pretty horrible — had heart palpitations and just felt exhausted. I haven’t had any palpitations in 3 weeks and I finally have my energy back and am so glad I did the procedure. Only 5 more months before we can start working on another baby. ” title=”Smile” /> Yay!

Within the next 2 months, I imagine I will probably go Hypo and need to start thyroid hormone, but for now, I feel fantastic!

Here are my levels without any PTU:

TSH – .011
T3 – 4.2
T4 – 10.1
T3 Total – 216

These are better than my levels were pre RAI while on 200 ptu. The lowest we were able to get my T3 pre RAI was 5.8 and my TSH was .009.

Overall, I am really glad I did it. I felt pretty run down for a couple weeks after the RAI, but overall, not bad. And now I feel great! So totally worth it and given my fear of surgery, this was the best route for me.

Thanks to everyone for your support. I will defintely stay in touch. I am getting additional bloodwork in a few weeks.

Susan

[jiboosmom]

in reply to: Graves and Acne #1062426

Thanks. My hope is that it will clear up now that my levels are starting to normalize. I still have it pretty bad on my back. I haven’t had this since I was a teen. Yikes!

[jiboosmom]

in reply to: RAI Scheduled for tomorrow #1062497

Thanks Lammie.

I had my RAI on the 15th and my main side effect was exhaustion and the sore throat. I am still pretty hyper (suffering with insomnia , but on a good note, I am still losing weight. ” title=”Very Happy” />)

I am nervous about hitting the hypo stage. Please keep us posted on how everything goes! When did you you start feeling hypo? How did you know it was coming on? What medication are they putting you on? How are you feeling now?

Good luck in your journey! Hoping things start to normalize soon!

Susan

[jiboosmom]

in reply to: Surgical Ablation after RAI? #1062402

Chris,

I would request an ultrasound to see if there is any tissue left and go from there.

I just had RAI and am praying that I am regulated easily. I am one of those who feels great slightly hyper. I used to suffer with depression during the winter and have had no signs of that this year in my hyper state. I wonder if your body just requires a little extra hormone to feel normal. I am curious how that works.

I hope you start feeling better soon! Keep us posted!

Susan

[jiboosmom]

in reply to: Armour vrs. Syntrhoid #1062413

Thanks! This is great information!!

[jiboosmom]

in reply to: Graves and Acne #1062424

I was able to find information on acne being associated with hyperthyroid. I will hope it’s that and not early menopause. ” title=”Smile” /> I made an appt with my dermatologist none the less.

Thanks! I’ll let you know what the doctor says. ” title=”Smile” />

[jiboosmom]

in reply to: Woke up gasping for air today…very scared! #1062415

I am so sorry you have to go through this. Our medical system is truely broken.

I wonder if your family doctor would have better luck referring you to a surgeon for removal of your thyroid. Honestly, an endocrinologist will most likely reccomend you have your thyroid remvoed, and with they goiter as a facter, s/he would probably recommend surgery over RAI.

I hope that your primary care physician can beef up his or her letter to Medicaid to push this through!

Good luck!
Susan

[jiboosmom]

in reply to: RAI and Toddlers #1062489

Shirley,

I am so sorry you are going through so much. Hang in there! I will be keeping you in my thoughts!

Thank you also for the information. I will definitely watch for symptoms as I move through this journey.

Best regards,

Susan

[jiboosmom]

in reply to: RAI and Toddlers #1062487

Shirlie,

I am sorry to hear that you have TED now after all of these years. Do you know how often this happens to graves patients who have already had their thyroid removed? What percentage of people does this happen to?

Susan

[jiboosmom]

in reply to: RAI Scheduled for tomorrow #1062495

I had my dose this morning and so far so good. No nausea. Just a bit tired — though that could be from my lack of sleep over the past week. I’ll let you know how things go over the next few weeks.

For now, I am going to keep my distance from my family. The doctor said I should probably try to keep my distance from my son for 1 half life (8 days), but could relax a little after 3 days.

Thanks for all of your comments. I also did additional research and found that there were little to no complications at low dosages such as mine. So happy about that. I didn’t know, before yesterday that the graves dosage was 10% of that of a cancer patient. That made me feel so much better about moving forward.

This is really a wonderful board! Thank you for all of your input.

Susan

[jiboosmom]

in reply to: it’s back…so I’m back…post-partum :( #1062458

Emily,

I talked to my perinatologist and my endo about this. Apparently, PTU is recommended if you are Breastfeeding and won’t be a problem to the baby as long as the dosage is not too high. My Endo gave me the option of allwoing the graves to go untreated while breastfeeding or only partially controlling the graves with a low dose of PTU (as long as the symptoms weren’t bothering me too much).

I hope that helps. I would definitely talk to your Endo. Best of luck! I hope you are able to continue BFing. It is such a wonderful gift to you and your baby.

Congratulations on your new addition!

Susan

[jiboosmom]

in reply to: RAI Scheduled for tomorrow #1062494

Thank you so much! That is exactly what I needed to hear. Very reassuring! ” title=”Smile” />

Good luck with your bloodwork! Let us know how it goes!

Susan

[jiboosmom]

in reply to: RAI and Toddlers #1062485

Thank you. This is very helpful. My mother had Graves with TED. I don’t believe I have any symptoms of TED yet (at least none that I know of — but I am going to go read up on it). I had no idea it could come on later on.

I really appreciate your candor. This is really great information!

[jiboosmom]

in reply to: RAI and Toddlers #1062483

You are probably right. I had just started ptu at that point, so who knows what else might have been going on in my body.

I am not on beta blockers now, but my doctor did say I could go on them, if needed, since I won’t be on PTU again after my ablation. I will definitely stay on top of the heart rate issue.

BTW, I am not having eye issues (asside from dry eyes), can the RAI cause Graves Eye issues?

Wish me luck tomorrow!

Susan

[jiboosmom]

in reply to: RAI and Toddlers #1062481

Thank you so much for all of the information. I haven’t had my treatment yet. I am scheduled for tomorrow. I will see what my radiologist recommends tomorrow.

That is soooooo good to know about the dosage. It makes me feel much more comfortable about the procedure.

I am very nervous about the dumping. I experienced this when I had my uptake scan. Two days later, my resting heart rate was between 100 and 120 and my bp went way up.

Susan

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