I had RAI 6 months after diagnosis of Graves' when I was 24 (I'm now 37) and haven't been right since. I did do well on ATDs. I was told that I couldn't continue them because I could go into thyroid storm (even though I was doing OK). I was told I'd be fine post-RAI and that I'd have thyroid function left (it's now dead). At the time, my husband was an intern and didn't know much more than I did. As the years have gone by, I got a master's in biology and my husband became an academic emergency physician. I got progressively worse and had clearly hypothyroid symptoms. But my standard lab tests were normal so nothing was done. I first had an inkling that they don't really know what they're doing when my cholesterol shot up to over 230 when I was only 29 (it had never been above 150 before that). My TSH was 4.0 (still normal but higher than it'd ever been). I brought up that high cholesterol is a symptom of hypothyroidism but the doctor said that it wasn't possible that this was the reason since my TSH was still normal. They told me I'd have a lifelong problem with cholesterol and put me on a low-cholesterol. diet (I weighed 126). I ate like that for 1 year, went back and my cholesterol was still over 230. My TSH was still 4.0. I had my husband prescribe 50 more mcg of Synthroid increased slowly over 2 months. Then I changed doctors and got retested. My TSH was 2.5 (well within normal) and my cholesterol dropped down to 125-150 regardless of what I ate. And it's been like that ever since.

Over the years I slowly developed swelling, arthritis, sick fatigue, panic attacks, acne, apnea, neuropathies, irritable bowel syndrome, etc... I was also infertile when everyone else in my family easily becomes pregnant.
Finally, I had a beautiful boy after I took fertility drugs.

Then in Feb. last year. My husband brought home an article on replacing T3 (active hormone) as well as T4 (replacement hormone). I hadn't known about the small amount of T3 that our thyroid makes and no one knows what it's for. Since my thyroid is completely dead, I was appalled that this wasn't replaced for me (not biologically sound reasoning to not replace it). I also found out that all the healthy females in my family had TSHs ranging from 0.5-1.5. I couldn't get my family doctor to help me so Tom (my husband) prescribed me a small amount of T3. The reduction in symptoms was almost immediate. Neither of us felt like meddling too much with it more because we didn't feel we knew enough. So almost 6 months later I got to see the endocrinologist that I wanted to see. He saw me for free as a professional courtesy to my husband and was not covered by our insurance at the time. If I wasn't married to a doctor, I'd still be on T4 only.

 

The endo ran some non standard tests (free T3, total T3, and TBG) and decided that I had problems converting T4 to T3 in my tissues. He put me on a big dose of T3 along with my T4. I have seen many of my hypothyroid symptoms either disappear or be greatly reduced. I still have many ups and downs because of the short half-life of T3 but I'm greatly improved.