Aa
Abnormally high levo needed regardless of labs?
Just curious. I've posted a few times and two years out, am just as frustrated, confused, hopeless and desperate as I was following RAI.
Long story short, my TSH has been at zero for awhile. I am on 163 mcg of T4 only. No matter what thyroid meds I am on, I haven't felt good at all. (NDT was good except the T4/T3 ratio was another beast). However, My FT4 fluctates from being top of the range (with labs taken 7 hours after dose) to being low-mid range (24 hours after dose). My TSH has not budged at all except when going back to a synthetic combo from NDT and I felt like hell warmed over once my TSH went to 2.0. My question is, I understand that TSH can't be the all knowing eye and that the frees are important, but a lot of people say my dose is high yet I seem to see others on a higher dose with a thyroid. My one constant complaint is that I have not slept since RAI and sleep is terrible. I don't have diarrhea and I get cold with some warmth discomfort at night. I don't have heart palps and I don't feel tremors. I definitely feel hypo but its confusing because many say that hyper can feel like this. I was EXTREMELY active prior to TT, I'm in my mid 30s and yet I can barely stand to say hi to someone because I am so hyper fatigued and irritable from accepting this. Oh, and I occasionally get tingling in my forearms upon waking but I am good with calcium. I was lowered to 150 and raised it to 163 4 weeks ago. On that amount I couldn't even function. I felt bone shivering cold, I still feel extremely emotionally flat, but ohh, I am finding that anything less than 150 and it's bloat central and hypo hell; I also was started on 150 post-RAI.
My FT3 is always in the dumps but I feel like the higher I go that maybe I don't feel so dependent on T3.... I haven't taken it in a long time. And when I go lower, the T3 doesn't really mask the hypo for me anyway.
Question, is there anyone here on a higher than normal dose even with a bottomed out TSH? I'm 5'9 and 155 if that helps but I think I'm to be on 119 by bodyweight and 171 if by BMI. Just curious if I should try giving this one more go and raise to 175 or maybe I'm some genetic freak that needs 200 mcg for all I know. Or maybe I'm hyper and oblivious. Not sure. But just asking for similar minded people. I just know that I want the old, active, jovial me. New me is miserable, fatigued, exhausted, and sad.
Thank you.
Long story short, my TSH has been at zero for awhile. I am on 163 mcg of T4 only. No matter what thyroid meds I am on, I haven't felt good at all. (NDT was good except the T4/T3 ratio was another beast). However, My FT4 fluctates from being top of the range (with labs taken 7 hours after dose) to being low-mid range (24 hours after dose). My TSH has not budged at all except when going back to a synthetic combo from NDT and I felt like hell warmed over once my TSH went to 2.0. My question is, I understand that TSH can't be the all knowing eye and that the frees are important, but a lot of people say my dose is high yet I seem to see others on a higher dose with a thyroid. My one constant complaint is that I have not slept since RAI and sleep is terrible. I don't have diarrhea and I get cold with some warmth discomfort at night. I don't have heart palps and I don't feel tremors. I definitely feel hypo but its confusing because many say that hyper can feel like this. I was EXTREMELY active prior to TT, I'm in my mid 30s and yet I can barely stand to say hi to someone because I am so hyper fatigued and irritable from accepting this. Oh, and I occasionally get tingling in my forearms upon waking but I am good with calcium. I was lowered to 150 and raised it to 163 4 weeks ago. On that amount I couldn't even function. I felt bone shivering cold, I still feel extremely emotionally flat, but ohh, I am finding that anything less than 150 and it's bloat central and hypo hell; I also was started on 150 post-RAI.
My FT3 is always in the dumps but I feel like the higher I go that maybe I don't feel so dependent on T3.... I haven't taken it in a long time. And when I go lower, the T3 doesn't really mask the hypo for me anyway.
Question, is there anyone here on a higher than normal dose even with a bottomed out TSH? I'm 5'9 and 155 if that helps but I think I'm to be on 119 by bodyweight and 171 if by BMI. Just curious if I should try giving this one more go and raise to 175 or maybe I'm some genetic freak that needs 200 mcg for all I know. Or maybe I'm hyper and oblivious. Not sure. But just asking for similar minded people. I just know that I want the old, active, jovial me. New me is miserable, fatigued, exhausted, and sad.
Thank you.
Im on 300 mcgs but my levels are way off and my body seems to have stopped absorbing the levo, and i dont have a thyroid.
2 Comments
are they testing your FT3?
We haven't seen Neekliingz back again, but since she feels so horrible on that amount of T4, there's a good chance they aren't and she's not converting the FT4 to the usable FT3...
As for you, If your FT3 is at the bottom of the range, you're still hypo, no matter what your TSH level is. Much as I hate to, I'd say it's time to find a new doctor, because she's adjusting your dosage based on TSH and will keep you ill.
I'm not sure why you're so afraid of the T3 medication... Our bodies are used to having T3, they produce it. Someone has done you a great injustice by scaring you so much you won't even take it.
Since your doctor prescribed 10 mcg, I'd suggest that you start slow and split it into 2 doses. Most of us find that taking T3 med in multiple doses works best, since it's fast acting and only stays in your system for a few hours. By splitting your total dosage - say, half in the morning with your T4 med and the other half around noon/early afternoon - you'll avoid getting the entire "slug" at once, then running low a few hours later. This will keep your FT3 level stable throughout the day. Most doctors don't bother to tell us this.
If you're getting labs within the next week, I might suggest that you hold off on starting T3 med until after you get the labs done, so you'll know where you're starting. It's customary to get labs every 6 weeks when actively adjusting medications.
Again, I strongly recommend looking for a good thyroid doctor, as it's obvious your doctor is not one.
As for you, If your FT3 is at the bottom of the range, you're still hypo, no matter what your TSH level is. Much as I hate to, I'd say it's time to find a new doctor, because she's adjusting your dosage based on TSH and will keep you ill.
I'm not sure why you're so afraid of the T3 medication... Our bodies are used to having T3, they produce it. Someone has done you a great injustice by scaring you so much you won't even take it.
Since your doctor prescribed 10 mcg, I'd suggest that you start slow and split it into 2 doses. Most of us find that taking T3 med in multiple doses works best, since it's fast acting and only stays in your system for a few hours. By splitting your total dosage - say, half in the morning with your T4 med and the other half around noon/early afternoon - you'll avoid getting the entire "slug" at once, then running low a few hours later. This will keep your FT3 level stable throughout the day. Most doctors don't bother to tell us this.
If you're getting labs within the next week, I might suggest that you hold off on starting T3 med until after you get the labs done, so you'll know where you're starting. It's customary to get labs every 6 weeks when actively adjusting medications.
Again, I strongly recommend looking for a good thyroid doctor, as it's obvious your doctor is not one.
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We can't really tell what's going without knowing what your actual Free T4 and Free T3 levels are, with reference ranges.
Free T4 is actually considered a "storage" hormone and isn't used directly. It's very possible that your body isn't converting the Free T4 to Free T3, which is the hormone that every cell in your body, actually uses. If you're not testing Free T3 every time you test Free T4, you really don't know what's going on, since the 2 have to be in balance with each other.
TSH is, basically, useless when one is on replacement thyroid hormones, so the fact that yours is at zero, is not a concern.
There is not such thing as a "normal" dose of thyroid medication; it's whatever it takes to make you feel you feel right. We've had members that have taken as much as 300 mcg or more. If you aren't converting the Free T4 to Free T3, you might have to add a source of T3 medication to increase your Free T3.
Some symptoms can apply to either hyper or hypo - another reason to be testing, both FT4 and FT3, so you can't always go by symptoms, alone.
I agree that it might be a good idea to test vitamin B-12, D and ferritin. Ferritin tells how much iron you have in storage and iron is necessary for the conversion of Free T4 to Free T3. Ferritin should be around 60-70.
Vitamin B-12 deficiency can cause horrendous fatigue/tiredness, brain fog, etc and vitamin D deficiency can cause some hypo-like symptoms. Vitamin B-12 should be at/near the top of its range and vitamin D should be minimum of 50-60.
Free T4 is actually considered a "storage" hormone and isn't used directly. It's very possible that your body isn't converting the Free T4 to Free T3, which is the hormone that every cell in your body, actually uses. If you're not testing Free T3 every time you test Free T4, you really don't know what's going on, since the 2 have to be in balance with each other.
TSH is, basically, useless when one is on replacement thyroid hormones, so the fact that yours is at zero, is not a concern.
There is not such thing as a "normal" dose of thyroid medication; it's whatever it takes to make you feel you feel right. We've had members that have taken as much as 300 mcg or more. If you aren't converting the Free T4 to Free T3, you might have to add a source of T3 medication to increase your Free T3.
Some symptoms can apply to either hyper or hypo - another reason to be testing, both FT4 and FT3, so you can't always go by symptoms, alone.
I agree that it might be a good idea to test vitamin B-12, D and ferritin. Ferritin tells how much iron you have in storage and iron is necessary for the conversion of Free T4 to Free T3. Ferritin should be around 60-70.
Vitamin B-12 deficiency can cause horrendous fatigue/tiredness, brain fog, etc and vitamin D deficiency can cause some hypo-like symptoms. Vitamin B-12 should be at/near the top of its range and vitamin D should be minimum of 50-60.
1 Comments
OMG, so sorry for the delay! I didn't get a notification of any responses to these!
So no labs as of recent... the last time my TSH was .08 (.3-5.0), FT4 tends to be middle high or top of the range, and FT3 tends to be low on the range. A new doc accredited my lack of restorative sleep (2 years of this missing and i am beyond miserable) due to my non-existent TSH.
She agreed to lower me to 125 T4 with 10 of T3 but I am direly scared.
I've raised back to 163 from 150 of T4 and still feel miserable, no sleep, lethargy and also emotionally devoid. She stated that 150 was too high for me also.
I wonder if I should just try this or if I should just say eff it, try taking the full 175 again and seeing what happens.
Any suggestions? i'm asking for labs so hopefully i can get some within the next week or so. I am just desperate and need something to change.
And does anyone do well on a high T4 amount alone?
So no labs as of recent... the last time my TSH was .08 (.3-5.0), FT4 tends to be middle high or top of the range, and FT3 tends to be low on the range. A new doc accredited my lack of restorative sleep (2 years of this missing and i am beyond miserable) due to my non-existent TSH.
She agreed to lower me to 125 T4 with 10 of T3 but I am direly scared.
I've raised back to 163 from 150 of T4 and still feel miserable, no sleep, lethargy and also emotionally devoid. She stated that 150 was too high for me also.
I wonder if I should just try this or if I should just say eff it, try taking the full 175 again and seeing what happens.
Any suggestions? i'm asking for labs so hopefully i can get some within the next week or so. I am just desperate and need something to change.
And does anyone do well on a high T4 amount alone?
Had you checked your Vitamin D3 level? Also worth to checkout Vitamin B12 and Ferritin levels. Anyway out of these Vitamin D3 especially important as it can give such fatigue feelings also it can contribute to low blood calcium levels and other other related symptoms too.
It may not be thyroid problem alone. Also it can come from overdose on levothyroxine as body convert excess Free T4 to reverse T3 to protect and when doing so your fatigue level can increase.
Anyway doing a Free T4, Free T3 and TSH is useful to find out the suitable levothyroxine T4 dose and for TSH in between 1 and 2 is ideal for many.
It may not be thyroid problem alone. Also it can come from overdose on levothyroxine as body convert excess Free T4 to reverse T3 to protect and when doing so your fatigue level can increase.
Anyway doing a Free T4, Free T3 and TSH is useful to find out the suitable levothyroxine T4 dose and for TSH in between 1 and 2 is ideal for many.
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