# Need thoughts..



## teri2280 (Feb 7, 2012)

I received a message on my phone (sent last fri, didn't hear til last night - we NEVER check our home phone lol) that my last body scan came back clean, and he wants to see me again in a year.

I'm going to call today, of course, but does this sound right to you guys? A year? Since March of 2012, I've had a TT, RAI ablation, 2 body scans, and only 3 blood tests since then. The 2nd blood test was high, so they changed my meds around, and the blood tests this time were "perfect" (still waiting on the actual numbers to be mailed).

A year, to me, just seems like a really long time to wait to see an endo for someone who is relatively new to all this. And the thing that bugs me is that even I don't know what perfect feels like. I feel pretty dang good now, but I felt pretty dang good with high numbers (at least compared to before surgery). Even before surgery, I was on the hypo end, for about a year at least, so I have NOTHING to go by.

Thoughts???


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## joplin1975 (Jul 21, 2011)

Going back a year later for a scan is totally normal. Waiting a year for blood work to make sure you are not the right track is not. Once I got regulated, I went on a quarterly basis for blood work.


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## webster2 (May 19, 2011)

Yup. I agree. You'll need blood work during the year to see that your are on the right track. Perhaps, the GP might do this for you?


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## Andros (Aug 26, 2009)

teri2280 said:


> I received a message on my phone (sent last fri, didn't hear til last night - we NEVER check our home phone lol) that my last body scan came back clean, and he wants to see me again in a year.
> 
> I'm going to call today, of course, but does this sound right to you guys? A year? Since March of 2012, I've had a TT, RAI ablation, 2 body scans, and only 3 blood tests since then. The 2nd blood test was high, so they changed my meds around, and the blood tests this time were "perfect" (still waiting on the actual numbers to be mailed).
> 
> ...


Unfortunately you are going to have to go to work and find a doc who will monitor your TSH, FREE T3 and FREE T4 on a quarterly basis assuming you are now euthyroid (feeling fine) and stable for now.

That is my humble opinion. The scan? A year is reasonable.


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## Lovlkn (Dec 20, 2009)

My Primary Doc runs my labs every 6 months - I am 8 years post op. I have not made a dose change in 4 or more years although my labs have moved somewhat.

I think once regulated annually is fine for labs. You are too early into the mix to lab infrequently. For now I would suggest every 6 months for a lab minimum.

Be sure and request FT-4 and FT-3 at every lab .


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## teri2280 (Feb 7, 2012)

I was late getting out of work today by about 15 minutes, and they were already closed, so I'll have to wait til Monday to call them. (My endo's office is retarded. They switch over to an answering service at 445 Mon-Thur, and 345 on Fri. I ended up working through my lunch today playing catchup from the past few days, and wasn't able to call.) I think I'm just going to let my endo handle the scans and stuff, and have my PCP take care of my #s, especially if they stick to the "no bloodwork for a year". Granted, my endo can do the bloodwork in house (with the exception of the one that has to be sent to USC), while my PCP can't, but one of the 2 diagnostic labs in town are right around the corner from my work (along with my PCPs office), while it takes me no less than 20 minutes to drive from work to my endo's. I think it'll work out better. I can make a 415 appt with my PCP for after work (instead of having to set one before 4 @ my endo and have to do it on a day off), have him order the blood work, get it done on my lunch the next day, and he'll have the results about 24 hours later. I think I'm gonna like this! (Plus the fact that my PCP will actually run my frees and the endo just runs TSH and total T4.)


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## StormFinch (Nov 16, 2012)

Uhm, yeah. Definitely go with the PCP. Not only more convenient, but Frees are what you need, not the 'All Powerful TSH test'. Notice the tongue firmly planted in cheek on that last part.


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## Lovlkn (Dec 20, 2009)

Teri,

Can I ask how much you weigh?

Your doses are really high.


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## teri2280 (Feb 7, 2012)

Lovlkn said:


> Teri,
> 
> Can I ask how much you weigh?
> 
> Your doses are really high.


Sure. weight questions don't bug me. 5'10", and 255. I know that weight makes me sound like a frigging whale, but I'm only about a size 18-20, depending on the brand. Walmart stuff tends to be a 20, but Kohls or Old Navy is 18. It's kinda funny when I get a "new" nurse at the doctors office - They'll make me get weighed at least 2 times before they let me get off, saying that there's no way I can weigh that much lol. (Especially, when during the thyroid stuff I was up to 275/80 ish and size 22.)


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## Lovlkn (Dec 20, 2009)

Thank you Teri,

I'm 5'10" as well and it really helps hide the weight being as tall as we are.

The reason I asked your weight is to try and figure why your doses were so high.

Your weight converts to 115kg multiply by 1.7mcg = 195.5 mcg

That would be the manufacturer recommended dose for a T-4 replacement medication.

My weight stuck and I could not lose a pound until I added Cytomel - maybe you are having the same luck.

Be on the look out for over medication symptoms as you begin to lose weight. If you have some it may indicate a slight dose reduction or switch around your doses.

To put it into perspective for you, I weigh 155 and take 125mcg of Unithroid and 12.5 mcg of Cytomel. Prior to my surgery I weighed 154 and prior to my DX I weighed 147.

Post vacation - I weigh 160. Gotta love those all inclusive s - LOL


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## teri2280 (Feb 7, 2012)

Lovlkn said:


> Thank you Teri,
> 
> I'm 5'10" as well and it really helps hide the weight being as tall as we are.
> 
> ...


Yeah, this is part of the reason I was worried about waiting a year for labs. I mean, just because it's resulting in "perfect" numbers now (which I'm still waiting on, gonna call them tomorrow, but I wouldn't be surprised if they're closed on both NYE and day), doesn't mean it's gonna hold steady there. I mean, my #s were good in April at my post op appt, no changes, and then in Sept, they were way high, and that was just 5 mos. later. IF I were to wait a year, hard telling what will happen. My main concern is that even though the doc is saying "perfect" I don't really know that it is, since he's running just TSH and T4, especially since my 1.9ish TSH was considered "normal" by him before the TT. I'm also still so new to this it isn't even funny. Don't get me wrong, I feel better now than I have in a LONG time, but I don't know if I should be feeling even better yet, or if I'm feeling "too good" lol. It's been so long since I felt "right" that it's STILL taking feeling better to realize I felt bad. (I know that probably sounds confusing to some readers, but I'm sure that alot of us who have been through this stuff know EXACTLY what I mean lol.) I'm not experiencing any symptoms of hyper or hypo, other than thin hair, but that one's getting a lot better than it was. I know I can't expect it to become perfect overnight, but I'm not afraid to go out somewhere with my hair down anymore. (I still wear the ponytail at work, for convenience, but I used to wear it ALL the time, just because my hair was so thin that I looked like I had a mullet if I left it down!)

I'm going to call both my endo and my PCP tomorrow. I have to call my PCP about another issue anyway, so I'll call them after the endo (assuming they're even open), and run the thought of him handling my bloodwork by them. I'm sure he'll have no problem whatsoever taking it over and letting the endo handle the cancer stuff. He's going to have to hopefully do it after a few years' worth of "all clear"s anyway, so why not start now?


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## Lovlkn (Dec 20, 2009)

Teri,

I completely understand.

It is so important to get your labs in order - my suggestion to get started since your doctor isn't running the proper labs is to order a lab panel from healthcheckusa.

Here is the link with the tests you need and it looks like they are having a sale this month. I have used them many times and usually get the results quicker than any doctor I have ever gone to. Check first to see if there is a lab draw location near you.

http://www.healthcheckusa.com/Thyroid-Panel-II-T4-Free-T3-Free-with-TSH/46938/

Hair loss is common with moving thyroid hormones. Once you get leveled out it will stop.


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## teri2280 (Feb 7, 2012)

Yeah, I've checked into it before. There's one about an hour away, not TOTALLY inconvenient, I guess. But if I tell my PCP what tests I want run, he'll run them.  He's cool like that. He's a DO vs. a reg. MD, so I'm betting he'd run all the frees anyway, and may already have done so back when we were trying to figure out the lump in my throat. I've been going to him since 2000 sometime, at the suggestion of my late stepfather. I needed someone at the time who accepted patients without insurance, and he was actually the only one in town at that time. I pretty much "settled" for him back then, but I wouldn't change it for the world now, especially now that I know that DOs are so much better than regular MDs for thyroid patients! I've had some pretty awesome docs (my surgeon for the TT, and my neurosurgeon for my back a few years ago) who have since left the area/moved on to diff specialties. Both kinda ticked me off a bit when I found out they were leaving, but I'll honestly cry for days if this guy ever leaves, that's how much I like him.


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