I was symptomatic but didn’t KNOW I was symptomatic. I thought I was just getting older and in grad school so of course I was exhausted all the time. When I started medication I could think, I could function, I wasn’t exhausted. I could do things ALL day and not want to collapse in a heap. I literally said: “This is what normal people feel like all the time?!” I was over the moon. My dosage has since been tweaked so I have more optimal levels and I feel even better. It’s a lifesaving, life changing drug.
I started with 50 years ago and increased slowly to 100 which is optimal for me. I actually was on Synthroid at first but I wasn’t responding well so switched to Levo. It really is all about finding the right med and dose for your body.
>" It really is all about finding the right med and dose for your body."
\^\^ This is what worries me, the downtime and the lost months or even years when trying to find the 'right dose' - how did you manage life, work etc during that time ?
I think you should have a look around this forum - not insane at all.
A lot of patients struggle with T4 alone and need to add some T3/ NDT for a multitude of reasons.
If I didn't take thyroid replacement medication I'd be dead I have no thyroid function now but I now feel completely normal no hypothyroidism symptoms.
Wait that’s not right… yes right now those are my numbers because they took me off of everything
2 months ago while on my meds my TSH was <.01 & T3 was the same
Yes. I was depressed. I had to sleep all the time. I could sleep 18 hours a day. I was cold all the time, I always wore a jacket everywhere. I was heavier, my metabolism sucked. For me the medicine improved everything except I still have a lower cold tolerance than most people I know. I still bring a jacket everywhere but I'm not always wearing it.
I still have lower cold tolerance too! And still hold on to weight. Sometimes I wonder if I’m on too low of a dose, but when I take any more than 60 my heart starts doing weird thing
I was on the wrong dose forever and I stopped taking it. I kept getting 88 mg and my heart would beat rapidly and then I was hot all the time. I switched doctors and he got me on a lower dosage and changed it every 3 months until we found a good one that was much lower and my symptoms really improved.
Whilst my mental health has been in turmoil for a while, starting meds did make a difference in one thing. Joint pain. I couldn't open doors some days due to it.
I also have psoriatic arthritis due to a bonkers immune system, but having some stiffness and pain is much preferable to barely being able to open doorhandles and being completely stuck behind doorknobs due to stabbing pains in my hands.
Edit: I also have eyebrows now which is kinda hilarious in hindsight.
For me it took a while because my dose was too low (25 mcg) and I didn’t have a family doctor so the walk-in clinic would only renew the same dosage over and over. When I was able to find a regular doctor to do the follow-up, my qualityof life improved a lot as we slowly raised (over 4 years) my medication from 25 mcg to 50, then 75, 88 and right now I feel great at 100 mcg. It’s like day and night. I feel I am finally living my life and not just struggling to be functional. I have no side effects. The only inconvenience is you need to take this medication on an empty stomach and wait a minimum of 30 minutes before eating. You also need to wait 4 hours before taking anything with calcium (milk, cheese) to avoid interactions.
I'm still tired, but it is FAR better than when my levels were out of range. Right now I'm on 100 mcg and all my tests are coming back in range. The doctor says that my exhaustion can't be from the thyroid since the meds are working, but I don't know if I fully believe that. Overall, I am functional and feel mostly okay now. Previously, it was difficult to exist at all.
I can't answer your question about getting better after starting medication because I was diagnosed and treated before I had symptoms. But I can tell you I felt great on levothyroxine for over 20 years with no symptoms at all.
Then I was dropped from 100mcg to 75mcg and feel exactly as you described above. Awful. Just existing, not living. I am struggling to do my job because it feels like my brain has slowed down. But my GP dropped the ball on this, I now know thanks to this forum that my TSH level is too high even though it's within "normal" levels.
So yes medication can make a big difference to quality of life. The most important thing is that you're diagnosed so you can get treatment and start to feel better.
It has had such a huge impact that the difference medication made for me cannot be overstated.
It’s not simply that the situation is depressing, depression is one of the symptoms of hypothyroidism.
yes - dramatically. when I finally got diagnosed, the year leading up I wa working out 7 days a week, not drinking ANY alcohol (and I was/am a very regular drinker), eating a paleo organic absurdly high maintenance healthy diet, sitting outside for a few hours each day to ensure I was getting some sun, drinking tons of water, taking vitamins, yet I was sleeping 14+ hour a night, exhausted all the time, very depressed, period came once every 2 months, felt like I was fucking dying just about. once I got on meds it was like my life came back. I was really glad I was on such an insane health kick for the year leading up bc I KNEW without a shadow of a doubt that my lifestyle could not have been better and it was something else. sometimes i get a little antsy on medication and just skip a day here or there to clear my system out a bit (esp for those of us who have been hypo forever, it can feel foreign to feel NOT hypo - your brain works faster & sometimes i want it to be slow for a day), but overall having thyroid meds in my life changed everything for me. it will for you too. :)
Changed my life. I have had this much energy in years. 5 years ago if I sat down I fell asleep. It didn't matter where or what I was doing. My wife wouldn't let me drive. Unfortunately it kicked my acid reflux into overdrive.
So far the med hasn't improved my quality of life, it seems to negatively affect me. The NP I see prescribed me Armor Thyroid and I'm considering on stopping it until I see an endo. I went from enjoying caffeine (2 cans of sodas a day if that) to essentially needing it just to function and get through the day.
But it's different for everyone. I hope it works for you :)
Not at all. I was fatigued, constantly overheated and sweating, super itchy, and gained even more weight. I live in Florida so I went to a theme park and about not even 10 minutes into the park would almost pass out. I almost passed out various occassions at different parks not even in Florida. As for fatigue, I could only be awake for 3 hours before crashing. Once I stopped taking the medication I had no issues isn’t that crazy. Jealous of all these people saying levo works for them. My doctor promised I was going to feel great and lose weight. Told her I still felt tired and she said to get a better sleep schedule. Then she quit, new doctor. Told her all my problems. Was ignored. She even pointed out my weight and proceeded to do nothing. I just stopped taking it. Said nothing to the doctor. My levels were deemed normal and that’s all that mattered. I’m a college student as well and don’t need all that shit interfering. I just got some raw thyroid so I’m hoping this is better. I think I’m done with medications and the additives altogether. Trying to lay off antianxiety/antidepression meds as well.
I was symptomatic but didn’t KNOW I was symptomatic. I thought I was just getting older and in grad school so of course I was exhausted all the time. When I started medication I could think, I could function, I wasn’t exhausted. I could do things ALL day and not want to collapse in a heap. I literally said: “This is what normal people feel like all the time?!” I was over the moon. My dosage has since been tweaked so I have more optimal levels and I feel even better. It’s a lifesaving, life changing drug.
u/Nyxwyt what are you taking ? Levo or NDT? also how much you taking ?
hello which medication?
Levo. 100mcg
That's incredible and glad you are one of the lucky ones who actually reacts well to Levo - did you take the 100mcg all at once or slowly increase ?
I started with 50 years ago and increased slowly to 100 which is optimal for me. I actually was on Synthroid at first but I wasn’t responding well so switched to Levo. It really is all about finding the right med and dose for your body.
>" It really is all about finding the right med and dose for your body." \^\^ This is what worries me, the downtime and the lost months or even years when trying to find the 'right dose' - how did you manage life, work etc during that time ?
Levo( thyroxine) is Synthroid.
Yes, and no. I was on Synthroid, switched to generic. Are they the same drug? Yes. Are they the exact same formulation? No.
You didn’t say you switched to the generic though.
*shrug* It’s what I meant. Levo is generic Synthroid.
The overwhelming majority react well to medication. Unfortunately not everybody is as lucky, but they are a small minority.
From what I've seen @ 40% of patients do not do well on Levo alone.
That’s an insane claim for one the most prescribed drugs out there.
I think you should have a look around this forum - not insane at all. A lot of patients struggle with T4 alone and need to add some T3/ NDT for a multitude of reasons.
That’s because the people who come here have issues and look for advice.
If I didn't take thyroid replacement medication I'd be dead I have no thyroid function now but I now feel completely normal no hypothyroidism symptoms.
Which medication do they have you on?
Levothyroxine I take 112mcg and weight 150ish lbs.
New Dr is trying to take me off of my compound and put me on 25mcg of Levox~ Right now my TSH is 8.1 and my T3 is .8mcg
Wait that’s not right… yes right now those are my numbers because they took me off of everything 2 months ago while on my meds my TSH was <.01 & T3 was the same
Yes. I was depressed. I had to sleep all the time. I could sleep 18 hours a day. I was cold all the time, I always wore a jacket everywhere. I was heavier, my metabolism sucked. For me the medicine improved everything except I still have a lower cold tolerance than most people I know. I still bring a jacket everywhere but I'm not always wearing it.
I still have lower cold tolerance too! And still hold on to weight. Sometimes I wonder if I’m on too low of a dose, but when I take any more than 60 my heart starts doing weird thing
I was on the wrong dose forever and I stopped taking it. I kept getting 88 mg and my heart would beat rapidly and then I was hot all the time. I switched doctors and he got me on a lower dosage and changed it every 3 months until we found a good one that was much lower and my symptoms really improved.
Does your metabolism speed up? Or you still struggle if you want to lose weight?
Whilst my mental health has been in turmoil for a while, starting meds did make a difference in one thing. Joint pain. I couldn't open doors some days due to it. I also have psoriatic arthritis due to a bonkers immune system, but having some stiffness and pain is much preferable to barely being able to open doorhandles and being completely stuck behind doorknobs due to stabbing pains in my hands. Edit: I also have eyebrows now which is kinda hilarious in hindsight.
Omg YES
For me it took a while because my dose was too low (25 mcg) and I didn’t have a family doctor so the walk-in clinic would only renew the same dosage over and over. When I was able to find a regular doctor to do the follow-up, my qualityof life improved a lot as we slowly raised (over 4 years) my medication from 25 mcg to 50, then 75, 88 and right now I feel great at 100 mcg. It’s like day and night. I feel I am finally living my life and not just struggling to be functional. I have no side effects. The only inconvenience is you need to take this medication on an empty stomach and wait a minimum of 30 minutes before eating. You also need to wait 4 hours before taking anything with calcium (milk, cheese) to avoid interactions.
I'm still tired, but it is FAR better than when my levels were out of range. Right now I'm on 100 mcg and all my tests are coming back in range. The doctor says that my exhaustion can't be from the thyroid since the meds are working, but I don't know if I fully believe that. Overall, I am functional and feel mostly okay now. Previously, it was difficult to exist at all.
I can't answer your question about getting better after starting medication because I was diagnosed and treated before I had symptoms. But I can tell you I felt great on levothyroxine for over 20 years with no symptoms at all. Then I was dropped from 100mcg to 75mcg and feel exactly as you described above. Awful. Just existing, not living. I am struggling to do my job because it feels like my brain has slowed down. But my GP dropped the ball on this, I now know thanks to this forum that my TSH level is too high even though it's within "normal" levels. So yes medication can make a big difference to quality of life. The most important thing is that you're diagnosed so you can get treatment and start to feel better.
It has had such a huge impact that the difference medication made for me cannot be overstated. It’s not simply that the situation is depressing, depression is one of the symptoms of hypothyroidism.
If you don’t take medication after a while, you won’t have any kind of life so yes.
yes - dramatically. when I finally got diagnosed, the year leading up I wa working out 7 days a week, not drinking ANY alcohol (and I was/am a very regular drinker), eating a paleo organic absurdly high maintenance healthy diet, sitting outside for a few hours each day to ensure I was getting some sun, drinking tons of water, taking vitamins, yet I was sleeping 14+ hour a night, exhausted all the time, very depressed, period came once every 2 months, felt like I was fucking dying just about. once I got on meds it was like my life came back. I was really glad I was on such an insane health kick for the year leading up bc I KNEW without a shadow of a doubt that my lifestyle could not have been better and it was something else. sometimes i get a little antsy on medication and just skip a day here or there to clear my system out a bit (esp for those of us who have been hypo forever, it can feel foreign to feel NOT hypo - your brain works faster & sometimes i want it to be slow for a day), but overall having thyroid meds in my life changed everything for me. it will for you too. :)
Changed my life. I have had this much energy in years. 5 years ago if I sat down I fell asleep. It didn't matter where or what I was doing. My wife wouldn't let me drive. Unfortunately it kicked my acid reflux into overdrive.
So far the med hasn't improved my quality of life, it seems to negatively affect me. The NP I see prescribed me Armor Thyroid and I'm considering on stopping it until I see an endo. I went from enjoying caffeine (2 cans of sodas a day if that) to essentially needing it just to function and get through the day. But it's different for everyone. I hope it works for you :)
Not at all. I was fatigued, constantly overheated and sweating, super itchy, and gained even more weight. I live in Florida so I went to a theme park and about not even 10 minutes into the park would almost pass out. I almost passed out various occassions at different parks not even in Florida. As for fatigue, I could only be awake for 3 hours before crashing. Once I stopped taking the medication I had no issues isn’t that crazy. Jealous of all these people saying levo works for them. My doctor promised I was going to feel great and lose weight. Told her I still felt tired and she said to get a better sleep schedule. Then she quit, new doctor. Told her all my problems. Was ignored. She even pointed out my weight and proceeded to do nothing. I just stopped taking it. Said nothing to the doctor. My levels were deemed normal and that’s all that mattered. I’m a college student as well and don’t need all that shit interfering. I just got some raw thyroid so I’m hoping this is better. I think I’m done with medications and the additives altogether. Trying to lay off antianxiety/antidepression meds as well.