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6708303 tn?1383972909

Total thyroidectomy and Doctor said no meds?!!

I had my thyroid removed 12 years ago and have been on Levothyroxine ever since. Past year or so I've not been taking them like I should, plus been very stressed out. 5 or 6 weeks ago I went to a new PCP, and she tells me to STOP taking my levothyroxine!
Lab levels: TSH w/reflex to FT4   2.51  (.4-4.5)
T4, total   13.5   (4.5-12)
T3, free   3.4  (2.3-4.2)
T3, total 129   (76-181)
My dr. says that I've become hyperthyroid. Thats why I have night sweats, tired, dry skin, and peach fuzz on my upper lip, high blood pressure.
Yesterday she called with new lab that my TT4 was down to 6.3  That is the only test she did!! Now along with symptoms I already mentioned, I cant focus, I cant think, i don't even want to get out of bed, I also feel like i cant catch my breath. I asked for referral to endo... any ideas whats wrong with me.....or my doctor?!
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6708303 tn?1383972909
thanks for all the help everyone. i really am grateful
Helpful - 0
Avatar universal
You have restarted taking a T4 medication. It takes 6 weeks to stabilize in your blood. So it will most likely take several weeks to start feeling any effects of taking the medication.

Sounds like your Dr didn't realize you don't have a thyroid gland.

I suppose it is possible that you were slightly hyper.  But that only would have meant that a reduction in the dosage, not a complete stoppage!  That is crazy.

TSH with reflect FT4 means that in the event that the TSH test was outside the normal range, they would then and ONLY then conduct the FT4 test.

you need to DEMAND that the Free T4  AND the Free T3 tests are done EVERY time.  And always request a copy of your lab report.  In the USA by law the Dr must provide the report to you if requested.
Helpful - 0
6708303 tn?1383972909
No luck today with getting an appt date with endo. My gut told me that she was wrong for taking me off meds. what can i do about that? the more i think about it, she could have really messed me up. it could take me months to feel better from what ive been reading
Helpful - 0
Avatar universal
I have been hyperthyroid being on medication, however, when my labs show hyper, my Endo and even PCP, have NEVER told me to stop taking the Synthroid, they just reduced the amount by 12mcg and retest in 6 weeks.

I had a TT done 20yrs ago.
Helpful - 0
6708303 tn?1383972909
Sorry for multiple posts, I keep thinking of other questions.
If my TSH and free T4 and my FT3 wasn't too far off of the 50% range, is it possible that before my hack pcp screwed me up, it was something else entirely? I guess since I haven't had a thyroid in over a decade, Im just quick to assume anytime something feels off, its because of that.
Helpful - 0
6708303 tn?1383972909
I would think that for anyone without a thyroid gland at all, a goal of TSH under 1.0 would be the goal if TSH is only there to tell the thyroid to release more hormone. But if TSH isn't as reliable for determining hypo or hyper I guess not?

Helpful - 0
6708303 tn?1383972909
my periods have been quite heavy last few months, but for the most part regular. I did ask for to test my estrogen levels, but she said it wasnt necessary the hot flashed were do To my high TT4
The only thing on my lab report about Free T4 is this line:
TSH W/REFLEX to FT4    2.51 mIU/L
I'm not even really sure what that means or if my TSH alone would be a different number.

She didn't test any other level the second time, smh. I've been back on levo for 2 days. Still waiting on endo referal. Haven't had symptom improvment yet, but nothing worse either.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Having had your tubes tied, should not throw you into early menopause; I had my tubes "snipped" when I was only 25 and I had normal menstrual cycles until I was in my late 30's, when they became quite erratic.  I think that was about the time I started having thyroid issues, along with peri-menopause.  

Being emotional can be caused by a lot of things, including, both peri-menopause and hypothyroidism.  You might want to ask for testing of reproductive hormones to see if you might be entering peri-menopause.  Some women start earlier than others.

As to the high TT4 - it's possible your body just wasn't converting as much for some reason.  Total T4 is obsolete anyway; there's no need to even test it, let alone use it to guide dosing.

Thyroid 101:  Your body mostly produces T4 hormone, with just a small amount of T3.  Of the Total amount of T4 produced, the majority of that (approximately 95%) is bound by protein and is unavailable.  The body doesn't use T4 directly; it must be converted to T3.  Only the unbound (Free) portion is available for conversion, so it's the Free T4 level that we look at and I don't see an FT4 on your list.  

Once the T4 is converted to T3, again, the majority of that, too, will be bound by protein and unavailable for use.  It's the unbound (Free) portion that's used by the individual cells.

Neither Free T4 nor TSH correlate with symptoms; since Free T3 is the hormone that's actually used by the individual cells, that's the result we'd go by, most to determine hyper or hypo.  Your FT3 is at 57% of the range. Most of us find that FT3 has to be in the upper half to upper third of the range, for symptoms to be alleviated.

When you had the TT4 level of 6.3, were there any other tests done?  How long have have you been back on the 100 mcg of levo?  When are you scheduled to test again?
Helpful - 0
6708303 tn?1383972909
Yes Barb, I am trying to get to an endo as soon as I can get a referral (insurance purposes). And yes i had to ask 3 times to make sure I wasn't misunderstanding her. If I hadn't finally got my prescription for levothyroxine (from her, I would swear she was trying to kill me (which she lowered to 100mcg. It was 125mcg)
Im only 32, but ive had my tubes tied...Can that throw someone into menopause early? I am pretty emotional lately
I feel very very hypo but i never have been hyper, but i know myself and I hadn't been feeling well in general when I went in the first place. Any ideas what can make the tt4 so high with other levels within reference range?
Helpful - 0
6708303 tn?1383972909
I haven't done the basal temp, but my feet are cold 80% of the time and hands about 60%. I have "hypo brain fog" Really, really bad so I wana guess that my pulse was around 90. But I may be wrong.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
There's absolutely nothing in those labs that indicates hyper... Find a different doctor asap.  If you have no thyroid, you HAVE to have the replacement hormones; if she doesn't know that, she shouldn't be trying to manage a thyroid case.  She doesn't even know what tests to order.  

If your TT4 is down to 6.3, with the same range, you've gone back hypo.  

I had night sweats when I was hypo; also had them when I was going through menopause, so if that's a possibility, you need to take that into consideration.  All of your symptoms indicate hypo.
Helpful - 0
1756321 tn?1547095325
Doesn't sound hyperthyroid to me. What is your body temp and heart rate?
Helpful - 0
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