Sarah,
TSH: It is odd that your TSH took so long to decrease to a somewhat normal level. The same thing happened to a poster in 2017, but there wasn't any explanation. This is another good example of why doctors should not use TSH to guide the amount of T4 to take. Your TSH seems to be acting normally now though. However people who take only T4 usually do not go to such low TSH as you (0.276 - 0.388), so this is a clue to me that you were taking too much T4.
FT4: I agree that your FT4 flattened-out at 175 mcg T4 and above, which supports the theory that your body will protect you from becoming hyper. It is regrettable that your doctors didn't measure FT3 at the same time.
Poor absorption and poor conversion: Doctors seem to toss these words out when they can't figure out what is going on. I simply would not believe that unless they gave you some incontrovertible proof that was happening. For absorption, I am assuming that you allow enough time between eating and taking the thyroid meds both before and after meals. Your FT4 and FT3 were somewhat normal back in March 2018, so conversion was working then and I don't see any reason to believe that conversion is not normal now.
Based on all the info you provided I still believe that it is quite possible that 187.5 mcg T4 was too much and your current 150 T4 + 10 T3 dose is too much T4.
I think it would be good for you to nail down a game plan now. You ran the marathon in May on 187.5 T4. I think the 150 + 10 is better (but not necessarily optimum) so you should be okay for the September marathon. It takes 4 - 5 weeks for T4 to stabilize, which means it will also take that long for RT3 to stabilize. I would advocate getting new labs at 5+ weeks, which would put you in the week after your next marathon.
If your doctor only orders TSH and FT4 again, I believe they both will be somewhat similar to your last labs and nothing will be learned - he may say you're fine or there is no difference so just go back to T4. If he gets FT3 as well, I predict that it will roughly near mid range. Again, he will say you are fine and just carry on. The only way that you prove that you are taking too much is by getting RT3 - if it is very high, then you're taking too much T4. However you have a big problem - trying to explain that to an endo - not very likely. If you don't think the doc is going to get all those tests then start planning now to get them yourself and if you are going to do that, I suggest going for all of them (TT4, FT4, TT3, FT3, RT3,TSH). You may think that is going overboard. But the way I look at it is that you put 5 weeks of your time and effort into it, so get all the info that you can - really how else can you decide what to do next if don't get all the info you can on what you are taking now.
Ahead of the labs, try to be consistent on when you take the meds. Take your meds as normal on the day before the labs. If possible schedule your labs to be taken at the time that you normally take your morning meds (but do not take the morning meds before the labs are taken).
In the meantime, keep on jogging...
Sarah,
TSH: It is odd that your TSH took so long to decrease to a somewhat normal level. The same thing happened to a poster in 2017, but there wasn't any explanation. This is another good example of why doctors should not use TSH to guide the amount of T4 to take. Your TSH seems to be acting normally now though. However people who take only T4 usually do not go to such low TSH as you (0.276 - 0.388), so this is a clue to me that you were taking too much T4.
FT4: I agree that your FT4 flattened-out at 175 mcg T4 and above, which supports the theory that your body will protect you from becoming hyper. It is regrettable that your doctors didn't measure FT3 at the same time.
Poor absorption and poor conversion: Doctors seem to toss these words out when they can't figure out what is going on. I simply would not believe that unless they gave you some incontrovertible proof that was happening. For absorption, I am assuming that you allow enough time between eating and taking the thyroid meds both before and after meals. Your FT4 and FT3 were somewhat normal back in March 2018, so conversion was working then and I don't see any reason to believe that conversion is not normal now.
Based on all the info you provided I still believe that it is quite possible that 187.5 mcg T4 was too much and your current 150 T4 + 10 T3 dose is too much T4.
I think it would be good for you to nail down a game plan now. You ran the marathon in May on 187.5 T4. I think the 150 + 10 is better (but not necessarily optimum) so you should be okay for the September marathon. It takes 4 - 5 weeks for T4 to stabilize, which means it will also take that long for RT3 to stabilize. I would advocate getting new labs at 5+ weeks, which would put you in the week after your next marathon.
If your doctor only orders TSH and FT4 again, I believe they both will be somewhat similar to your last labs and nothing will be learned - he may say you're fine or there is no difference so just go back to T4. If he gets FT3 as well, I predict that it will roughly near mid range. Again, he will say you are fine and just carry on. The only way that you prove that you are taking too much is by getting RT3 - if it is very high, then you're taking too much T4. However you have a big problem - trying to explain that to an endo - not very likely. If you don't think the doc is going to get all those tests then start planning now to get them yourself and if you are going to do that, I suggest going for all of them (TT4, FT4, TT3, FT3, RT3,TSH). You may think that is going overboard. But the way I look at it is that you put 5 weeks of your time and effort into it, so get all the info that you can - really how else can you decide what to do next if don't get all the info you can on what you are taking now.
Ahead of the labs, try to be consistent on when you take the meds. Take your meds as normal on the day before the labs. If possible schedule your labs to be taken at the time that you normally take your morning meds (but do not take the morning meds before the labs are taken).
In the meantime, keep on jogging...
Hi Sarah,
I think it is great that you are trying the T4-T3 combo, but I fear that you may be taking too much T4. Your previous average daily dose of 187.5 mcg T4 was very high and would be far too high for most people. Likewise your current 150 T4 plus 10 mcg T3 would also be too high for most people. It evident from your posts that you have done a lot of research on thyroid hormone replacement and if you have this covered, then just disregard my comments.
You may ask - why aren't you hyper if you are taking too much T4? Here is a brief explanation. T4 is normally converted to T3 and Reverse T3 (RT3) in approximately equal amounts. If you take excess T4 you will get a temporary rise in Total T3 (TT3) and FT3, but then your body's mechanism that prevents you from becoming hyperthyroid will start working. That is, your body will start converting a higher percentage of the T4 to Reverse T3 (RT3) rather than T3 so that TT3 and FT3 don't go into the hyper range. Your RT3 will go up above normal and because RT3 is not an active hormone like T3, you can actually experience hypo symptoms.
If you found that your FT3 did not go up as you increased your T4 dose, then the above could be the explanation.
I believe that if indeed you are taking too much T4, then adding the T3 will not improve your symptoms. It would be easy to prove if you are taking too much T4 by getting a RT3 blood test - if it is way above the reference range then you are taking too much T4.
It really would have been wise to get TSH, FT4, FT3 and RT3 measured prior to starting the T4-T3 combo - that way you can see what effect the Cytomel had when you get the next blood tests.
Unfortunately you cannot count on your doctor or endo knowing about these things. If your doctor/endo refuses to send you for blood tests then I would suggest you go to a private lab and pay to get the tests done. You can search for labs online at findlabtest.com.
Keep up the good work Sarah - you are doing the right thing in learning as much as you can about thyroid hormone replacement because you are going to have to live with it for the rest of your life and as you can see, doctor's training and knowledge on the subject is woefully lacking. You're an active person and it's your body and your life. I really think that you are doing the right thing for the long term by going to the T4-T3 combo - now you have to get it to the right dose. You might have to take the bull by the horns and get your own lab tests. Personally I set my goal to get all of my thyroid hormones to near the middle of the reference ranges (TT4, FT4, TT3, FT3, RT3 but not TSH).
have you checked your vitamin B12 levels. This can cause fatigue as well.
I personally take a B12 sublingual (gummies at the moment but they don't seem to work as well as the sublingual B12) at around 2PM or so. This seems to help me with later afternoon and early evening fatigue.
My wife and daughter take their T3 between 2Pm and 3PM.
Nothing seems to be able to affect my wife's ability to sleep. She can fall asleep anytime, anywhere for the most part. And she is on fairly high doses of both T4 and T3. That said, her sleep quality is not the best. And no she does not have sleep apnea, (checked twice in sleep clinic).
Be aware and prepare your Dr that your next test may very well suppress your TSH! This may freak out your Dr as it does almost every single doctor and they will want to dramatically cut your dosage. REGARDLESS of whether you feel better or not.
It seems that T3 seems to be able to overwhelm the pituitary and it will cut back TSH production as a result. While possible on any therapeutic value of thyroid medication if large enough dose of even T4. But T3 really seems to have an effect of suppressing TSH. So just be prepared n case that happens to you.
Many a person who was just starting to feel well and on the road to recovery, gets the rug pulled out from them as their Dr freaks out at a suppressed TSH, and cuts the dosage, and crashes the patient and they feel like crap again. Don't let that happen to you!
Hi Sarah... Typically, the first dose of a T3 medication, such as Cytomel or Liothyronine is taken with one's Levothyroxine in the morning and the second dose around noon/early afternoon; however, there's nothing carved in stone, so you can experiment with the timing and do what works best for you. T3 does not have to be taken on an empty stomach, like Levothyroxine does so there's more leeway in the timing. It can be taken with lunch, just before or just after.
When I was taking 10 mcg T3 (2 X 5 mcg), I was getting up at 3:30 am to be at work by 5:30 am. I took my T4 on an empty stomach when I got up, but if I took my T3 that early, the first dose was worn too early in the day. In view of that, I waited and took the first one sometime around 7:00 am.
I took the second dose around noon or 1:00 pm. This helped keep my Free T3 levels more stable throughout the day, but allowed them to drop sufficiently as to not interfere with sleep since I had to go to bed by around 7:30 pm. Of course, most people don't go to bed that early, but it's typically recommended that one not take T3 meds after about 3:00 pm or they could interfere with sleep.
It all depends on the person though and what works for your schedule.
Goodness, It's been awhile, since I took Cytomel T3. I was prescribed 1x5, but split pill in half. I always took first dose with T4, wait a few hours, take 2nd dose. Let's say I take first dose 8am, I'd take next dose after lunch approx 2pm,. Suggest not taking any T3 after 6pm or close to bedtime. Good luck, wishing you well.