# Oh, that wacky thyroid of mine!



## Prudence (Oct 30, 2012)

So a while ago I posted that my thyroid was still under active, and that a bump in dose to 137 of the levothyroxine was still making me feel crummy. Very very dizzy, heart palps sometimes, anxiety, still a bit on the jittery side, etc.

I had an appointment yesterday and explained my concerns, the NP decided to do a blood lab first to see what was up before going forward and was I ever shocked to discover that in just six weeks or so, my TSH went from 20 to a .04, and my Free T4 went from 1.4 to 2.7 (the reference range on my labs go from 0.40-4.4 for TSH and 0.9-1.8 for Free T4) So obviously, I'm getting _way_ too much medication, and we're going to try splitting a 112mg dose for a bit to see if that helps. The NP says he's never seen anyone do a total 180 in numbers so fast before! (of course, apparently I was the first person they saw with a high uptake scan even with thyroid labs in a borderline/normal range, too) I'm starting to wonder if I'm going have a medical journal published about me.

Anyone else have such a quick turn around? I'm really hoping it's a med problem and not Graves' rearing it's ugly head again. If so, I honestly think a TT might be the way to go at this point.


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## Octavia (Aug 1, 2011)

Prudence, what was your previous dose before bumping up to 137?


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## Andros (Aug 26, 2009)

Prudence said:


> So a while ago I posted that my thyroid was still under active, and that a bump in dose to 137 of the levothyroxine was still making me feel crummy. Very very dizzy, heart palps sometimes, anxiety, still a bit on the jittery side, etc.
> 
> I had an appointment yesterday and explained my concerns, the NP decided to do a blood lab first to see what was up before going forward and was I ever shocked to discover that in just six weeks or so, my TSH went from 20 to a .04, and my Free T4 went from 1.4 to 2.7 (the reference range on my labs go from 0.40-4.4 for TSH and 0.9-1.8 for Free T4) So obviously, I'm getting _way_ too much medication, and we're going to try splitting a 112mg dose for a bit to see if that helps. The NP says he's never seen anyone do a total 180 in numbers so fast before! (of course, apparently I was the first person they saw with a high uptake scan even with thyroid labs in a borderline/normal range, too) I'm starting to wonder if I'm going have a medical journal published about me.
> 
> Anyone else have such a quick turn around? I'm really hoping it's a med problem and not Graves' rearing it's ugly head again. If so, I honestly think a TT might be the way to go at this point.


It does sound like TSI is on the rise again! Have you had TSI labs or Trab..................ever?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583


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## Prudence (Oct 30, 2012)

Octavia-was on 112mg from late March to mid/late May, when my TSH result then was 20. My FT4 and T3 (I don't believe it was a FT3 test) were normal, but they bumped my dose to 137 then based on TSH alone (though both of the FT4 and T3 were somewhat on a lower end.) It's been barely six weeks and it skyrocketed

Andros-Funny enough? Nope. never had either one-was told by an old endocrinologist there was "no need" for one even when my labs were off,(long story short, he was convinced I was just depressed and making up my symptoms.) this present group is a bit more thorough, but just assumed I did have anti-bodies since my uptake scans were always high/symptoms I had while being in a good range meant my thyroid was under attack. I'd love to ask for these,(and a FT3 instead of a regular one!) and if they don't feel the need to, I'm thinking of finding another GP to run a better test. (My present GP is a nice guy, but knows nothing about thyroid and would rather my endo group take care of it) The doc that agreed my thyroid was off and gave me medication for Graves' seems to be a good guy who ran a lot of the basic thyroid tests, I might go visit him again this summer and ask about it.


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## Prudence (Oct 30, 2012)

Well. I asked and got rejected. Apparently my endo group says that those tests would help only for diagnostic purposes, and since I already had 2 uptake scans and radioactive iodine treatments that indicated that I had Graves', "they're not neccessary for treatment." I wrote back requesting that maybe if my antibodies were still high, we're going down the wrong treatment path and since ive had three years of labs borderline when I was hyper and they know that my thyroid is sneaky, couldnt I at least get checked??. Waiting to hear back on that one, but to me that's ridiculous. I would think making sure your antibodies are down during treatnent would be benenficial, wouldn't it? I guess I need a plan B.


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## Andros (Aug 26, 2009)

Prudence said:


> Well. I asked and got rejected. Apparently my endo group says that those tests would help only for diagnostic purposes, and since I already had 2 uptake scans and radioactive iodine treatments that indicated that I had Graves', "they're not neccessary for treatment." I wrote back requesting that maybe if my antibodies were still high, we're going down the wrong treatment path and since ive had three years of labs borderline when I was hyper and they know that my thyroid is sneaky, couldnt I at least get checked??. Waiting to hear back on that one, but to me that's ridiculous. I would think making sure your antibodies are down during treatnent would be benenficial, wouldn't it? I guess I need a plan B.


You are thinking correctly. One would want to test the antibodies from time to time to be "sure" the medical protocol of choice is working.

Durn. It's all about saving money; not about the patient.


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## Prudence (Oct 30, 2012)

Andros said:


> Durn. It's all about saving money; not about the patient.


Sadly, you're correct. :/ I'm awaiting to hear back on my second request, but my husband has a co-worker whose wife had hyperthyroidism (but not Graves') who went to a more sympathetic MD that actually ran all the antibody tests for her just to check. My husband is going to ask who they went to, so hopefully I can see them if my endo group doesn't want to budge on the decision. I mean, it could be it was just too much medication, but what's it going to hurt to check antibodies, you know? On the plus side, my endo group isn't opposed to giving T3 and they told me they wouldn't mind giving me a low dose once we figure out what T4 dose would work well for me. I'm thinking the muscle cramps/joint pain/dizziness/headaches I occasionally get might be because I'm not converting it well. (Would actually help to know for sure if they actually, you know, checked for these things! )


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## Andros (Aug 26, 2009)

Prudence said:


> Sadly, you're correct. :/ I'm awaiting to hear back on my second request, but my husband has a co-worker whose wife had hyperthyroidism (but not Graves') who went to a more sympathetic MD that actually ran all the antibody tests for her just to check. My husband is going to ask who they went to, so hopefully I can see them if my endo group doesn't want to budge on the decision. I mean, it could be it was just too much medication, but what's it going to hurt to check antibodies, you know? On the plus side, my endo group isn't opposed to giving T3 and they told me they wouldn't mind giving me a low dose once we figure out what T4 dose would work well for me. I'm thinking the muscle cramps/joint pain/dizziness/headaches I occasionally get might be because I'm not converting it well. (Would actually help to know for sure if they actually, you know, checked for these things! )


Oh what good news. I sure hope they don't mind sharing info with you and for you. That would be awesome. Crossing my fingers here.

Please let us know!


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## Funkyg (Jun 25, 2013)

...,..,()'cfmmj


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## Prudence (Oct 30, 2012)

Bumping the thread:

My regular GP agreed to run a couple antibody tests... but I got a stern lecture about how it wouldn't help me since I was already on a thyroid replacement drug and "to stop googling things." Which...I wasn't, really. I had explained to his own staff about looking specifically for the TSI test, and they all seemed baffled why I never had one. He wrote some down orders, and they didn't look right to me, so I asked if that would cover what I was looking for and he snapped at me that "yes, it will." The tech who drew my blood didn't even know. 
I got results back for these two things:

*Anti-thyroglobulin AB*: 15 _(Reference Range <60)_
*Anti-thyroid peroxidase AB*: 39 _(Reference Range <60)
_
Helpful? Sure. What I was looking for? ....not exactly. I might have to bite the bullet and order the TSI myself (I can) But the good news is, I have some (though low) floating in there-and my last doctor who poo-poo'd me about having a thyroid problem claimed I had tests and they were zero (and then turned around and said they were never ordered.) So I do have a little something going on, there. Now if I could just get my TSI!!


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## Andros (Aug 26, 2009)

Prudence said:


> Bumping the thread:
> 
> My regular GP agreed to run a couple antibody tests... but I got a stern lecture about how it wouldn't help me since I was already on a thyroid replacement drug and "to stop googling things." Which...I wasn't, really. I had explained to his own staff about looking specifically for the TSI test, and they all seemed baffled why I never had one. He wrote some down orders, and they didn't look right to me, so I asked if that would cover what I was looking for and he snapped at me that "yes, it will." The tech who drew my blood didn't even know.
> I got results back for these two things:
> ...


Hmmmmmmmmmmm; let's back up a bit. You do or don't have a thyroid? I was not quite clear when you said you had radioactive iodine treatment. Please clarify.

You may need to look around for a better doctor.


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## Prudence (Oct 30, 2012)

I had RAI done on me twice. My history was that after the first RAI last year, I began to have hyper symptoms again a few months later, yet I had to push to get a second RAIU scan because my free T4, total T3, and TSH were okay during that time. (Yeah, I know...never do FT3 and I wish they would.)Second RAIU scan showed I was still overactive. Had the second RAI treatment done this February. Blood tests right now are hyper after going from hypo to hyper in a month on a slight bump in meds, and I wanted a TSI test done because I've never had one,(went off my symptoms/scans) and I feel like maybe this might be something to look into to make sure we're heading in the right direction. I'm not saying it might not be just too much medication-it very well could be-but I thought I was to have TSI done throughout my time as a Graves' patient to monitor what's up. My labs often don't reflect my symptoms, and I'd like to make sure my thyroid isn't kicking in again, if that makes sense.


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