Hi all, I've already read quite a bit on this topic in other discussions here but I just wanted to share my recent experience and maybe guess get some reassurance?
I was first diagnosed with hypothyroidism when I was about 20 or 21. My pcp diagnosed me, and at the time he didn't do any further testing to see why I was hypo. I just started Synthroid and that was that. I didn't have any issues with it for years, I was on a pretty low dose as my levels were kind of borderline. Flash forward a few years, I moved to Houston and saw an endocrinologist. He tested me for Hashimotos, which was negative, and just told me to keep taking the Synthroid and chalked it up to genetics. Then another year or so later I saw another endo that was closer to my house (the first guy was way downtown, over an hour drive) and she took a look at my current and previous labs and thought I didn't need to be on Synthroid any longer. Which was weird, because I was going to ask her if we should increase my dosage, as I'd done some research and felt my levels were still kind of high even though they were technically considered within normal limits. I don't exactly remember her reasoning, she said something about it being likely that my levels were only hypo when I was first diagnosed because of a virus or something as they were borderline. So I listened to her and stopped taking it, all seemed fine. I'd say this was about 2 years or so ago.
Then earlier this year in March, I started feeling super lethargic and gained about 10 pounds out of nowhere. No change in my diet or exercise, and it seemed that I'd gained it in literally like a few weeks. That was the only 'symptom' I'd had when I was first diagnosed, so I asked a PA that I work with (I work in a doctors office) to just order some labs to see. My TSH was high, she recommended I see my PCP. So I go, and I guess the PA didn't order a full panel, only checked TSH, so my PCP was reluctant to start me on Synthroid but agreed because I'd had the weight gain and fatigue. She started me on 50 mcg (pretty sure I used to take 25, but it may have been increased to 50 at one point during the years).
So now for the present...about a month ago I started noticing I was just feeling off. I couldn't quite explain to people what was wrong, but I was just feeling very jittery and anxious and like I wanted to vibrate out of my skin. I was also noticing heart palpitations and intermittent pains all over my torso, chest, ribs, collarbone area. it was weird. So being me, I googled it and naturally freaked myself out enough about all the worst case scenarios, and went to an urgent care. While I was there, they did an EKG and listened to my heart, etc. The only thing out of whack was my blood pressure was high. I also have white coat syndrome so I figured that was why. I remembered while I was there that these symptoms could be a result of my Synthroid, so I mentioned it and they ordered labs. It came back a couple days later that my T4 was elevated, though everything else was within normal limits. (T4 was at 14, normal limits per the results are 5.1 - 11.9)
So I went to my PCP (who I haven't been crazy about honestly, I was going to look for a new one next time I needed a physical). I told her what had been going on, and she's looking at my bloodwork and somehow missed the elevated T4 even though that was the reason the urgent care told me to follow up with her. I had to point out to her that it was elevated. I had already stopped taking the Synthroid, and she agreed that I should not take it and recheck levels in 6 weeks. So, even though she's not my favorite doctor, she was clearly right about not wanting to put me on Synthroid again so quickly last time.
Anyway, in the meantime she also noticed my blood pressure was high and asked me to monitor it. I did, and it was consistently high for about a week and a half, so I decided to see a cardiologist just to be sure everything was okay. we discussed my BP and I told her about the palpitations etc., she initially said she wanted to get me on medication for my BP until I could lose some weight and hopefully stop taking it. In the meantime she did a 24 hour heart monitor and echocardiogram. Both came back okay, she could see the palpitations on the monitor but said they were benign. By my follow up visit, my BP had pretty much normalized. I still sometimes have higher readings, but they aren't as high as they were and for the most part its back to normal thankfully so I didn't need to start meds.
LONG POST SHORT...it's now officially beginning of week 5 since I stopped synthroid and I am still feeling ill. Not nearly as bad as I was, but I'm still having palpitations and elevated heart rate. Elevated enough that I have to be sure and monitor it closely while exercising so I don't overdo it. And the anxiety is still there in a big way. I already have some issues with anxiety and this has just tripled it, and then monitoring things like my heart rate make me anxious when it's high, so it's just a never ending vicious circle. it doesn't seem that my T4 was horrifically elevated, has anyone else experienced these kind of symptoms with T4 only being a little high? I think I've read it takes 6-8 weeks for your thyroid to level out after changing your dosage/stopping, but some say it can take months, anyone have any personal experience?
Sorry for the crazy long post, I kind of just wanted to write down all that's been going on for my own therapeutic reasons as well as get any kind of advice or to commiserate with anyone who's had the same! Oh and for the record, I'm a 28 year old female.
Thanks to anyone who read this far! <3
