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Avatar universal

Best TSH level

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.
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Avatar universal
have been on synthroid for a few days and haven't gotten palpitations or rushes anymore so that's good so far... :)

Synthroid is easier to break into two so yea I am on 37.5 a day I think that is a good place to start. WIll get tested in a 6 weeks right.. or is it 4?

As far as I rememver my t4 and t3 responds well with my TSH... will get all tested this time for sure.. :)

See I always wondered about how one would feel at 2 vs 5.
Helpful - 0
535882 tn?1396576685
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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649848 tn?1534633700
COMMUNITY LEADER
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.
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Avatar universal
Yea Barb that is correct. 25 brought me real close to where I want to be so I figure I don't need a whole nother 25 do i?
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649848 tn?1534633700
COMMUNITY LEADER
You're adding 1/2 of which pill?  The 25?  That would be 12.5, which added to your whole 25 mcg pill would give you 37.5.  Is that the way you are doing it?  
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Avatar universal
Switched to Synthroid today to see if I am more stable. Also what I like is that I can break them in half real nice so I take a .25 and then add half a pill to that.
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Avatar universal
hmmm. ok. The doc said just do the 50mcg for now, which I am sure will make me hyper then ill alternate...
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Avatar universal
Ask about alternating 25 mcg one day and 50 mcg the next day?

T4 takes 6 to 8 weeks to build up.  So by alternating you'd be averaging 37.5 mcg.  I'm not sure your body would notice between days as T4 has such a long half life in your blood stream.
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Avatar universal
I really appreciate all the feed back :)

The doc did say that I seem very sensitive to the medicine. So maybe I will try the Synthroid and see if that stabilizes me.

I do think that this is a dosage issue because in between going from hypo to hyper and back I have hit a sweet spot where everything just purrs and it's such a yummy feeling overall.

I am able to tell when I am off. One day I came home, and felt like I had just run a marathon. Standing on my legs I felt like I had been walking ALL day and I had not.


I am going to do that 50 for a week then I will taper off to alternating, I think it will be hard to gauge the dose because yes, 25 is too little and 50 is too much.

Just from my previous results it did seem to me that I converted fine to t3 and that my t4 was reacting well... On the next go I will get all three. done.

Even though my doctor doesn't like to test t3 he does go by symptoms and I do trust him or learning to :)
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649848 tn?1534633700
COMMUNITY LEADER
How are you alternating the 25 mcg and 50 mcg?  Daily?
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Avatar universal
Your body ONLY uses the FREE T3 hormone.

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.
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Avatar universal
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.
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Avatar universal
does that mean then even though my TSH was high, I did not need levo since my t4 was good?
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Avatar universal
yea, my ft4 was good when  I first tested but the doc said that I was struggling to keep it at that level. 25 worked for a while but I can feel myself going backwards again.

I was borderline on the antibodies..
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Avatar universal
Your early FT4 actually looked pretty good.  

Then you started on 50 mcg and you went Hyper.

Well maybe 25 mcg would be the ticket.

Have they tested you for the antibodies to test for Hashimotos or Graves (TSI I think it the test for Graves)?

Either Hashi's or Graves can cause fluctuating conditions as well.
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Avatar universal
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..

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Avatar universal
Advice is much appreciated.

9/16/2010
TSH REFLEX = 6.15 (using a reference range of .5-6.)
Free t4 = 1.37 (using a reference range of .71-1.85)



10/20/2010
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
Tsh-.01
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.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
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 $.  
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Avatar universal
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!
Helpful - 0
231441 tn?1333892766
Hi,

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.
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Avatar universal
Hey Barb, thanks as always for your time.

I hear what you are saying and it makes sense.

I can definitively say that I need more t4 just from symptoms. Mainly fatigue. I started .25 8weeks ago and really hit a sweet spot for a couole weeks and then the last week has been dragging again.  

I saw the doc again today and my tsh was 5. It used to be 14 8weeks ago then 2 weeks ago  it was 3.

Should I get t3/4 done before i move up to .50mcg?

Also I was going to try brand name synthroid since I seem to be very sensitive to generic. I get palpatations.
Helpful - 0
Avatar universal
Hey Barb, thanks as always for your time.

I hear what you are saying and it makes sense.

I can definitively say that I need more t4 just from symptoms. Mainly fatigue. I started .25 8weeks ago and really hit a sweet spot for a couole weeks and then the last week has been dragging again.  

I saw the doc again today and my tsh was 5. It used to be 14 8weeks ago then 2 weeks ago  it was 3.

Should I get t3/4 done before i move up to .50mcg?

Also I was going to try brand name synthroid since I seem to be very sensitive to generic. I get palpatations.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
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.
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