so this whole thyroid thing is pretty new and am learning when it's in the pooper and not. Last few times I was able to tell that it was off however funny thing is 2 weeks ago my tsh was 3 and felt ok. I been feeling crap this last week and and when it and sure enough it was 5 so it seems to be crapping out again.. :( I am moving up to taking 50mcg and trying synthroid. THe generic one seems to give me palpitations and is not fun at all.
I didn't bother to get t4 and t3 cause I have before and my t4 and t3 do respond and convert fine. I have felt pretty good when I am around 2. I am just curious from others here that:
1.) Can there really be a difference in how you feel between being at 2 and say 5? So far I think so but wanted some opinions.
2.) Also could the levo be stopping my body from making it's own? I know we are adding to our reserve and not stressing our thryoid out, but could it be that the medicine is stopping my body from producing more so it will continue to slow in production or is this the fun part about Hashimotos.
TSH causes no symptoms, and there is no "target" for it, because sooo many things cause TSH to vary, it totally unreliable to use as a diagnostic/treatment tool; in many cases, you can't go by it at all.
A dosage change of T4 med takes up to 6 weeks to reach full potential, so what you feel like this week is probably the result of something you did several weeks ago, whether it be an increase or decrease, or even staying the same, which would indicate that you need an increase in med, but that should only be determined by FT3, FT4 and symptoms.......
You have to have the Free T3 and Free T4 in order to see what the actual hormone levels are.
I know you've posted past levels of FT3 and FT4, but if you could give us a quick rundown of your most recent levels, we might be able to add some insight.
The main thing I really want to impress upon you, is that TSH should NEVER be used a diagnostic/treatment "goal"........ example: my TSH routinely is < 0.01 - if that was used as my dosing criteria, my medication would be taken away (I actually had a doctor who did that -- he kept me ill for nearly a year). I only look at FT3 and FT4 results and that's what you should be doing too.
I'd say you should move up to 50 mcg, and then retest FT3, TSH and FT4 in 6 weeks.
Some people are lucky and their TSH does reflect what their ft3 and Ft4 area doing, but others of us, particularly those of us who have been on thyroid meds for a long time, find that TSH is no longer a reliable indicator.
Just for reference, in people whose TSh does reflect things, optimal level is often in the range of 1 - 2.
Ft3 and FT4, for most, is mid range or a bit higher, as a starting guideline.
Also consider that the more Thyroid medicine you take, the less reliable TSH is. As the medicine suppresses TSH.
The main important thing to remember is that you have to feel well and symptom free. Regardless of where the numbers for anything are. Having said that people tend to feel "well" when their FT4 are mid range and FT3 are in the upper 1/3 of the range. They have also found that symptoms have almost zero relation to TSH and even a very weak relation to FT4. FT3 is the best correlation to symptoms. And that makes perfect sense given the fact that your body ONLY uses FT3.
I agree with Barb. The one thing to take away here is to absolutely NOT rely on TSH. Instead monitor your FT3 & FT4 and your symptoms. And when you get feeling well, knowing your blood levels of both Free's will give you your target to keep within so you remain feeling well.
Finding a Dr who will medicate you to mid range FT4 and upper range FT3 based on your symptoms and ignoring resultant TSH is an altogether TOTALLY different story!
In my opinion, yes, you should get Free T3 and Free T4 tested prior to increasing your medication, so you will have something to compare to when you retest a few weeks after your increase. That way, you'll know whether the increase actually brought your levels up.
Do make sure you are getting FREE T3 and FREE T4, not just T3 and T4, which would be total and is obsolete and of little value, so pretty much a waste of $.
TSH REFLEX = 6.15 (using a reference range of .5-6.)
Free t4 = 1.37 (using a reference range of .71-1.85)
TSH REFLEX = 7.72 (using a reference range of .5-6.)
Free t4 = 1.59 (using a reference range of .71-1.85)
the above was before the Meds.
Currently with 50mcg alternating with 25mcg
T3free - 6 (5.27 reference)
T4 - 2.2 (1.8 reference)
this was early this year and then I stopped taking LEvo all together since I was hyper.
Doc thought it was maybe something else causing the thyroid to act up.
So I stopped taking levo do see that my Thyroid would do. I did great from a few
months till 8weeksa go when I tested tsh at 14 so doc up me back on it. I had lots of fatigue and still do.
I would say fatigue and weakness is my main issue right now. I have alot of neck and back pain and I think it's related to just being weak and tired... but then again maybe I am making this up cause I heard that being this low is not enough to cause such symptoms.. ie you have to be waaaaaay of to cause the kinda symptoms I have.
When I first got tested I had alot of muscle aches and pains that nothing else seemed to resolve. Saw 20 diff docs and ended up at a Internist that said everything else looked good save for Vitamin D and Thyroid levels, saying that my thryoid was struggling to keep my levels normal and that I should take this medicine to help. SO in taking 50mcg I became hyper really quick..
No, I would not conclude that just because your t4 was within range you shouldn't be on the levo. Many times that I've been tested my free t4 is within range but my TSH is high so my dosage is increased. And then I feel much better. It just depends on your personal situation and what the doc says for you. If you are symptomatic and the TSH results show it, go with what the doc says and increase your dosage. I have learned to request the doc also send orders to have my free T4 tested along with TSH just to have extra data. And yes, my dosage has gone up over time since I started the medication. But, I would rather monitor the levels and increase as needed than not feel like I can function. Just part of life I guess.
You are only being tested for TSH and free T4. You NEED to have your free T3 tested.
many people report not feeling well until their FT4 is mid range AND their FT3 is in the UPPER 1/3 of the range. Not simply "within range".
Since your body only uses the free T3 molecule and you have no idea where you are at, you may have some sort of issue related to the conversion of T4 into usable T3.
it appears that you are sensitive to medicine or you have a fluctuating Thyroid production from your thyroid gland. Hashimotos's can do this. So can "hot" nodules that periodically "leak" thyroid hormone from the Thyroid gland. Have you had an ultrasound to determine if you have any thyroid nodules?
This may simply be just an issue with tweaking your medication dosage. From the info you gave above alternating 25 & 50 was too much, and 25 may have been too little. So you may be narrowing it down to the dose that works for you.
Quite possibly you don't need another whole 25 mcg -- why not sit at 37.5 for a few weeks, then retest and see how you feel? If you're good at that level, leave it there, but be aware that with Hashimoto's your thyroid will continue to produce less and less, so you dosage will have to increase accordingly, until your thyroid is "dead", and you are completely dependent on the replacement med. I was actually, relieved when I got to that point, because I felt relatively sure that I'd be able to maintain more steady levels.... I was right.
most endos will shoot for a tsh around a 1 definitely under a 2 . the way you feel can be hugely different from a 5 to a 2 . but you really also have to look at the free t4 and free t3 to see how your converting .these will best show how you feel . kevin
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