So confused about lab results history vs symptoms
I've posted before about this general issue but I just got my most recent lab results and I'm still confused.
A little bit of my history...I've known for years that I had an underactive thyroid, suspected it especially because my dad had his thyroid removed when I was in high school because it was so enlarged it looked like he had a soft ball sticking out of his neck. He knows next to nothing about his condition though, he tells me its "not graves but I think its the other one" so I assume he has Hashis. But I've had severe fatigue, cold intolerance, depression and weight problems for years despite being very active and leading a healthy lifestyle. In the last few years I've also experienced brain fog, mild hair loss and very slow digestion/constipation. Yet every time I went to the dr I was given the dreaded "your thyroid is normal" non-diagnosis. In the meantime I did 2 sleep studies which were inconclusive so they diagnosed me with "borderline" narcolepsy. But that was based on the word from my dr that my thyroid was fine. I also went to a gastroenterologist for my digestive issues and through process of elimination and a ct scan he said I have IBS.
Two years ago I finally visited an endo (having dealt with various pcp's before that as I moved around a lot) and although he also declared my levels to be normal (TSH 2.65 (0.45-4.5), FT4 1.10 (.82-1.77)) he found a very small nodule so he prescribed 12.5mcg levothyroxine which he said would also help with my symptoms. It did nothing so he agreed to increase to 25mcg. I stopped seeing him when I moved and changed jobs and soon after I increased my dose to 50mcg when I started seeing a new pcp. That was in July 2010 (no useable labs from then because the physician's assistant who ordered the labs didnt order TSH or free T's). Soon after that I started to feel some symptom relief, although definitely not total relief, and I was able to start losing weight slowly for the first time in many years. But at that same time I also started taking Wellbutrin, wearing a BodyBugg calorie monitoring device, measuring and logging all my food and increased my exercising from 4 days a week to 6 days a week. So I wasn't really sure which was responsible for the weight loss, it was probably a combination.
By October 2010 I was still feeling decent but not total symptom relief and had lost 15lb of the 25lb I wanted to lose and my labs were TSH 0.718, FT4 1.24. So my TSH had dropped considerably and my FT4 had increased slightly, by about 15% of range. I didn't know then to request FT3. By January I had lost another 5lb but I was still pretty tired and depressed so I begged my endo to switch me to Armour. In January my TSH was 0.719. After 6 weeks on 30mg Armour my TSH hadn't changed much (0.695) but my FT4 had dropped to 0.88. Over the next 4 months my symptoms slowly returned but it was hard to notice because it was so gradual. It wasn't until July 2011 when I'd gained back half the weight I'd lost that I realized something was off. My TSH had almost tripled to 1.88 and my FT4 was still very low at 0.94. I immediately switched back to levo (with a brief 5wk stint on Tirosint but I had anxiety with that so I went back to levo).
Here is where the pattern of lab results starts to confuse me. After 6 weeks back on levo (8/30/11) TSH had dropped to 1.15 and FT4 was back up to 1.24. So my FT4 was back where it was in October when I was feeling somewhat better yet now I was feeling awful, no symptom relief at all. I had my FT3 tested on 8/30 too it was 2.7 (2.0-4.4). I figured my body was just still adjusting to losing the supplemental T3 from the Armour but after another few weeks I was still feeling lousy I requested Cytomel from my endo. She'd already said she would absolutely not increase my levo dose because my levels were fine so adding cytomel was pretty much my last option. At first I felt great but after another few weeks I went back to feeling how I was before the cytomel. 6 weeks after adding 5mcg cytomel to my 50mcg levo (11/30/11) my TSH was up slightly to 1.19, FT4 dropped to 1.14 and FT3 unchanged at 2.7. Why didn't my FT3 change at all? And why did my TSH increase when supplementing with T3 is supposed to suppress TSH??
I realized at this point the bottom line was I needed a dose increase but I can't figure out why I wasn't able to get the same results on the 50mcg levo as I had the previous year? This doesn't make sense to me. Has my body changed that much? Or have I developed resistance to external thyroid hormone supplementation? I fired my endo and found a new pcp (where I could see the actual dr and not a physician's asst every time) who agreed that 50mcg was too low. I was disappointed to learn that my new pcp does go by TSH BUT she feels that everyone has their own "normal" and lab ranges aren't that useful. So she wanted to get my TSH back down to around 0.7 which is where it was when I was feeling somewhat better back in Oct 2010. But I guess she wasn't comfortable with cytomel so she said I should stop taking that (honestly I wasn't sure I needed it anyway since I did ok with levo alone before) and increase my levo to 75mcg and then 100mcg if needed. Of course stopping the cytomel was a very rough transition but after getting through that I did start to feel a little better. As usual though after about 5 weeks on my new dose I started to feel a return of most of the symptoms. Its been 9 weeks since I stopped cytomel and 8 weeks since increasing levo to 100mcg and my labs are TSH 0.933, FT4 1.28, and FT3 2.5.
So my TSH did drop but not to the 0.7 goal. My FT4 went up slightly (up 15% to 48% of range) and this is the highest its ever been tested at. MY FT3 dropped slightly, maybe still responding to the end of cytomel? I'm feeling better than before the dose increase but still not nearly as good as I was in Oct 2010 when I was only on 50mcg levo. I just don't get it!! My dr increased me to 112mcg which I just started a few days ago but honestly I don't feel much hope. Something just isn't right when 50mcg had some positive effects but 100mcg has hardly any!! How can this be? Did I mess up my system by trying so many different meds? I've changed none of my other meds except for adding some recommended supplements. My exercise and diet have remained the same they were when I was losing weight yet I gained all 20lbs back plus 5 more. Which doesn't help my depression at all!
If TSH is relatively useless once you're on meds, why does it seem to be a better indicator for my symptom level than FT4? If FT4 was the better indicator for me then I should be feeling better (or at least the same) now at 1.28 than I was in Oct 2010 when it was 1.24 but I'm not. So maybe my dr is right and it's because my TSH isn't down to "my normal" of about 0.7.
So sorry this is soooo long but after 2 years of this I am more confused and frustrated than ever and I just want answers! I didn't want to leave out any details so maybe someone will be able to shed some light on the whole thing. Thanks for reading my novel! I appreciate any advice :-)