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Should I Get Back On Thyroid Medicine

About a year ago, my endo put me on thyroid medicine for hypothyroidism eventhough my blood test indicated normal thyroid levels.  My thyroid level was 3.36, which she said is normal high and with discretion, could try it.  Before putting me on medicine, I felt horrible all the time.  I had muscle and joint pain, excessive sweating, weight gain, trouble losing weight, fatigue etc.  I started feeling better after being on the medicine.  Three weeks ago, she told me to stop taking it.  Her reasoning was this...Since you have to be on thyroid medicine for life, she wants to see if I really need to be on it.  She said it would be a shame if I didn't need it and take it for the rest of my life.  She said if I start feeling bad, I can go back on it. Currently, I feel depressed, extremely fatigued, achy, and can't stop sweating.  I feel like I should go back on it, but don't want to be too hasty.  Does anyone have any advice?  Should I wait for a few more weeks?  Is it possible to have normal thyroid levels and need thyroid medicine? Thanks in advace for the comments!
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Avatar universal
It seems pretty clear to me that the ONLY thing that changed years ago was the addition of thyroid medication and the result was that you felt better.

Similarly now the only thing that changed was stopping medication and you now feel worse.

I think the answer seems pretty clear to me!

Also "normal" range is a joke.  Especially with regard to TSH which is most likely what you were talking about with the 3.36 results.  About 9 years ago or so the American Academy of Clinical Endocrinologists (AACE) recommended the TSH reference range be changed from (0.5-5.0) to a much lower range of (0.3 - 3.0)  But many labs still refuse to use this new lower reference range.  So even with this new range your old lab TSH of 3.36 would be slightly ABOVE range and NOT within the so called "normal" range.  Granted it is pretty negligible amount. But the point is that it would lean toward needing hormone medication rather than not.

The Dr's test seems reasonable. But it also appears the results are in!  And you seem to need medication.  You can ride it out longer and see if your thyroid starts to wake back up and starts picking up the pace.  That is up to you and how poorly you may feel.

TSH is a screening tool at best and really shouldn't be used exclusively for dosing mediation.  But even when it is, many Dr's will try to keep TSH between 1.0 and 2.0.

A FAR, FAR better measure of thyroid condition it to actually measure the two thyroid hormones rather than a pituitary hormone which TSH is.  The two thyroid hormones you really should be tested for are; Free T4 and Free T3.  

Many people find that in order to feel well they need to have both of these results to be:

1) Free T4 (FT4) to be in the MIDDLE of the range (50%) or slightly higher

AND - that means in addition to

2) Free T3 (FT3) to be in the UPPER 1/3 of the range (66.7%).

Notice that BOTH of these are WELL higher than simply "somewhere" in the normal range.  Many Dr's will only dose until the person gets somewhere in the range and often times that is on the lower part of the ranges and leaves the patient feeling sick.  But telling them that they are fine and normal.

So you may want to get tested for FT4 and FT3.  In addition you may also want to be tested to see if you have Hashimoto's. This is the most common cause of low thyroid in modern world.  This is an auto-immune disorder where your body thinks that your thyroid gland is a foreign invader and your immune system goes about killing your thyroid.  As a result the thyroid gland produces less and less hormone over time. Which means that your medication dosage will have to increase to keep up with this loss of hormone. IF you have Hashimoto's.

The tests for Hashi's are two.  One is TPOab and the other TGab.  These measure the antibodies that are attacking the thyroid.  It seems everyone has some of these. But an elevated amount of one or both would be indicative that you may have Hashi's.    If so there is nothing really different about treatment. Other than you may want to have your thyroid FT4 and FT3 levels checked more often. They way you can catch when the thyroid begins to poop out and an increase in dosage may be needed to make up for that loss.
Helpful - 0
3177814 tn?1347334677
Oh nevermind the pregnancy comment.  I forgot I was part of this community and thought someone was asking about this in one of them.  (d'oh) sorry; still, it's not okay IMO.
Helpful - 0
3177814 tn?1347334677
I had thyroid cancer last year and am on levothyroxine for life, as well as a low dose of cytomel, and if I let myself go hypo that could be dangerous.  The only time I have ever heard of anyone going off of the med is to prepare for a whole body scan and even then Thyrogen is used to prevent going hypo, and at any rate, a pregnant woman wouldn't get a WBS because it requires a tracer dose of radiation.  This has red flag written all over it and I would seriously consider talking to your OBGYN about this advice you were given.  Nobody should be hypo for any reason, let alone being told to go cold turkey from it.  Ugh this upsets me a lot.
Helpful - 0
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