# I want off this ride!!



## minli (Aug 2, 2011)

Hi guys. Small recap from last visit, been an interesting time....heh.

Diagnosed with Graves November of 2011, started on Methimazole. Original labs:
FT4 *6.22* (0.82-1.77)
T3 *491* (71-180)
TSIab *587* (0-120)
TPOab *319* (0-34)
TSH *<0.006* (0.450-4.50)
Vitamin D *32.1* (30.00-100.00)

Ok, now you know where I started. Not fun. Was put on Methimazole 30mg, Propranolol.... and played the wonderful game of my Endo shoves pills at me while I become sicker and sicker game....for a year...fired him, hired another who recommended RAI. So I have RAI October 13th of 2012. These are my labs before RAI:

September 26th 2012 pre-RAI:
FT4 *2.08* (0.82-1.77)
T3 *296* (71-180)
TSH *<0.006* (0.450-4.50)
Vitamin D *31.3* (30.00-100.00) (I was put on Vitamin D supplements at this point)

Had the RAI Ocotber 13th 2012, these were the following apt:

November 15th, 2012
FT4 *2.97* (0.82-1.77)
T3 *488* (71-180)
TSH *<0.006* (0.450-4.50)
Thyroglobulin, Qn. *2751.0* (0.5-55.0)

The tumor marker freaks us all out, but it can go high with Graves and RAI, we tenatively schedule for FNA of a known 3cm nodule once my numbers look a bit better since my thyroid is very reactive to being messed with.

I go back for more blood...yay:

December 26th 2012:
FT4 *1.79* (0.82-1.77)
T3 *256* (71-180)
TSH *<0.006* (0.450-4.50)

We decide it was a good day to go ahead and FNA, it is ultrasound guided....doc is commenting on how large my thyroid is and how angry the tissue is....finds the nodule....it has lost two of its margins!!!! AND, has shrunk dramtically 1/2 the size it was!!! We also reduce my Methimazole from 40mg to 20mg to give my body a break as my liver levels, while still stable, were not as good as we like them. Everything is good and we're all pretty happy....and then this happens....

February 19th 2013:
FT4 *0.49* (0.82-1.77)
T3 *100* (71-180)
TSH *14.050* (0.450-4.50)

* I should mention Vitamin D was checked with this draw, it is sitting at 31.7 now, cannot seem to get it in the 50-60 range they want *

WTH??? :sad0049: I feel horrible, started to feel bad about a week ago, but thought I was getting sick. Apt is Monday, been instructed to stop taking Methimazole...duh. Now I am just super confused, and the goiter still rages on huge as ever


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## Octavia (Aug 1, 2011)

Wel...it looks to me like your RAI treatment worked, so you don't need any (or as much) anti-thyroid med.

I don't know...I wonder if you might be a candidate for surgery to get it over with once and for all.


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## minli (Aug 2, 2011)

not yet, this round of RAI got the tissue to shrink a lot, but it is still too large to remove and we can't section it with the cystic bands that run through it. Originally this appointment was supposed to be the take me off Methimazole and prep for RAI again mid to late April gig. With the goal of shrinking it further so we can reevaluate surgical options.

Ultimately the goal is removal, but this whole suddenly hypo as all get out is throwing a wrench in the plan


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## minli (Aug 2, 2011)

forgot to mention, I have a call in to the Endo's office because for the past few days (3-4) my voice has been raspy and my throat sore when I swallow on the left side.

I've never had my throat be sore this whole journey and my voice never was affected before, so it concerned me. Is that something common with hypo?


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## Octavia (Aug 1, 2011)

Might be more related to the swelling than being hypo...but anything's possible, especially considering that your thyroid has decreased in size and you didn't have the soreness before.


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## minli (Aug 2, 2011)

yeah, I have begun to seriously expect nothing and everything regarding this crazy thyroid world we live in.

I was feeling down about, well, feeling down and so very tired yesterday while talking to my dad. He said from what he's witnessed the past few years it's like there's a kid playing ping pong against a brick wall, my brain is the kid trying to control everything, my thyroid is the wall, rejecting everything it is told to do, and I'm the ball, just along for the ride and absorbing every hit.

I laughed last night, I cried this morning. Don't know how much longer I can be the ball or what else I can do about it, all I truly know is it has been a rough ride.


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## minli (Aug 2, 2011)

Well, had the apt with the Endo today and right now I am in remission. We don't know how long I will stay like this so she put me on 50 of Synthroid, blood every two weeks for the next 6 weeks to check levels to be sure we have a handle on things.

My thyroid has shrunk considerably, she said it is still more reactive than she'd like to see upon palpation, but given my eyes' reaction to the RAI, she has given me the green light to get another surgical consult and see if we can use this remission to get the damned thing out  I have an apt with the surgeon on the 18th which was the earliest I could get in....cross fingers, I would love for this to finally be over!


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## Lovlkn (Dec 20, 2009)

I have questions about your Vt D treatment - can you expand your treatment plan.

I took 35K IU daily for I think 6 weeks then re-tested in the high end of range. Began taking 1K IU daily , only to find my D level drop significantly.

I now take 5K IU Vit D 6 days a week and maintain around 70-80 in range.

As far as your situation my fingers are crossed you can have the surgery ASAP. You have not reached remission until your TSI has disappeared - you likely are having blocking and stimulating antibodies making you appear to be in a remission, Ask your doctor to define what he means by remission


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## minli (Aug 2, 2011)

I was on 4K of vitamin D, but it has been raised to 10K. Apparently there was a recent study that came out regarding vitamin D and E capsules where they discovered that two capsules from the same bottle were found to have different levels of the vitamin.

If going up to 10K doesn't bring me up to at least 55-65 range, we're switching to prescription. My grandmother on my dad's side has osteoporosis, so it is a concern of mine.

I asked about antibodies yesterday because I keep having flushing and general hyper symptoms every now and again, this concerned her so she started me on 50 of Synthroid instead of 75 like she originally was going to do. Right now I think we're in more of a holding pattern just trying to keep things as copacetic as we can while working towards getting it out.


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## Andros (Aug 26, 2009)

minli said:


> Well, had the apt with the Endo today and right now I am in remission. We don't know how long I will stay like this so she put me on 50 of Synthroid, blood every two weeks for the next 6 weeks to check levels to be sure we have a handle on things.
> 
> My thyroid has shrunk considerably, she said it is still more reactive than she'd like to see upon palpation, but given my eyes' reaction to the RAI, she has given me the green light to get another surgical consult and see if we can use this remission to get the damned thing out  I have an apt with the surgeon on the 18th which was the earliest I could get in....cross fingers, I would love for this to finally be over!


I hope so and I have my fingers crossed also. I could not find where you posted the results of your biopsy!


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## minli (Aug 2, 2011)

Hi Andros  Sorry my memory sucks right now. The results came back as inconclusive.


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