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Old 09-22-2006, 03:36 PM   #1
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Talk me out of this...

...if you can.

I was supposed to stop Cytomel yesterday to prepare for an uptake scan scheduled about 2 weeks from now. I didn't take my morning dose but then I got some news about a critical health issue with my daughter and I figured I was going to need my wits and strength to deal with the looming crisis, so, around noon yesterday I took one of the three daily doses of Cytomel I have been taking for 3 weeks. I figured I would contact my endo and let him know we would need to delay the uptake scan.

Fast forward a few hours and I learn the looming crisis is no longer looming. A dosing error at the Mayo in Jacksonville had put her in crisis but she came out of it OK once they figured it out. No more immediate crisis on that front, so I didn't take my Cytomel last night, and I skipped the first two doses today.

With no Synthroid (I stopped that 4 weeks ago) and now no Cytomel I am starting to drag, already. If this is what it feels like after just one day without thyroid hormones I am going to be bedridden within a few days (exageration, yes, but I am already staggering like a drunk and expect worse shortly).

I've got this bright(?) idea I can take a teeny-tiny dose of Cytomel as needed to stay on my feet, and maybe it won't negatively impact the scan. The T3 in Cytomel is used up quickly. I haven't taken T4 in 4 weeks. I can go cold turkey three or four days before the scan and there will be no evidence of my indiscretion.

I have to head out shortly for a poker game that sometimes runs past midnight, so I just took 1/2 of a 25mcg pill (1/6 of the prescribed daily dose). I'm taking some caffeine to help me along and the Cytomel bottle in case I crash in the middle of a big poker pot where thousands of dollars are at stake. JK

I'm thinkng I can take tiny doses of T3 to ward off the extremes of hypo. If I have work that must be done, take a half-pill. When I want to go out during the evening but I'm dragging, take a half-pill.

Your assignment, if you decide to accept it, is to talk me out of this. Tell me I will negate or postpone the scan, tell me I'm crazy, tell me what you really think.

Or, tell me what I want to hear.

 
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Old 09-22-2006, 04:06 PM   #2
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rozzihippychick HB User
Re: Talk me out of this...

You know Archie you make sense to me, why not just have a few days discomfort rather than weeks if cytomel can keep you ticking over and not affect the scan. I like to use my wits like that too not all medical advice is the right advice cos we have lives to lead.Glad your daughter is ok
Rozzi

 
Old 09-23-2006, 06:14 AM   #3
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Re: Talk me out of this...

Archie:
The Cytomel only stays in your body for a couple of days. I don't see why you couldn't stop for 3-4 days before the scan. If you were going to have the RAI then I might say to follow the docs orders for the optimal result. It appears your only taking a minimal amount of Cytomel anyway by halfing it. I'm no expert but I know how you feel. After stopping the meds I was dragging too - but I had to prepare for the scans and the RAI.
Good Luck!
Kathy

 
Old 09-23-2006, 09:31 AM   #4
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Re: Talk me out of this...

Thanks to both of you for telling me what I wanted to hear.

You are correct about this scan, Kathy--it is not a therapeutic one, just diagnostic.

Now, can we hear from someone with a different take on it? What is the downside?

I'm assuming my TSH will not be as high as it might be if I go cold turkey for 2 weeks. Does anyone know how critical the TSH reading is when preparing for an uptake scan?

 
Old 09-23-2006, 05:32 PM   #5
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Re: Talk me out of this...

If I were you I would not do this unless I could convince the doctor it is a sound plan. Getting a couple of internet pals to agree with your naughtiness doesn't count.


Edit to say: I do feel sad you need to feel really bad for two weeks, but I have to wonder if cheating on the doctor's instructions would actually be cheating your health, maybe not worth feeling a little better during that time.

Last edited by ErinBeth; 09-23-2006 at 07:00 PM.

 
Old 09-23-2006, 05:48 PM   #6
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Re: Talk me out of this...

Archie:
In reference to the previous poster. My endo wanted the numbers to be 30 when I had the scan and then subsequent RAI. Mine was 114 (tested right before the scan and subsequent ablation therapy). Now, this was 6 weeks without Levoxyl and three weeks without Cytomel. However, although they they precribed 50mcg/dayof Cytomel I never took it. I maybe took 1/2 to 3/4 of 25mcg per day. It really didn't sit well with me.

So, what were your current readings? Will your doctor take blood before the test to make sure you are ready for it?

Again, I would definately advise your doctor you are taking a little Cytomel. I don't see the big problem, espcecially if your life will be considerably altered without the drugs. I know when I hit 114 my eyelids were puffy and I started to slow. I could go to work, but got tired when I got home. Everyone is different.

Hope that helps!
Kathy

 
Old 09-24-2006, 04:35 AM   #7
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Re: Talk me out of this...

He will be testing TSH and several other things a few days before the scan, but he didn't give me a goal for the TSH number. He also advised avoiding seafood and iodized salt--again, he didn't push to have me on the strict low iodine diet, just avoid sources with concentrated amounts. What he said was the scan would be scheduled for a few days after the blood work, with no mention of where he expected my TSH to be.

Yesterday I noticed skin peeling on my hands, a symptom of hypo that I had when I didn't get hormones for five weeks. So far the hair isn't falling out, so far I haven't been freezing in a 73 degree room. It's hard to guess where my TSH is at the moment. My only previous experience was during the weeks following TT and rib surgery. I'm not yet that fatigued but my body was dealing with serious healing issues in addition to hypo back then.

So far I've managed with just 1/6th of the dose prescribed, per day. I take that around 6PM to keep me going until bedtime. Since the Rx for Cytomel was for a 3 week supply (no refills) I should have run out last Wednesday, but because I was afraid of the 75mcg dose, I started slow and ramped up slowly. I never got to the full daily dose. Because of that I have a few of the pills left. Because I have been taking less I actually started going hypo 3 or 4 weeks ago.

Back in January when we were preparing for the therapeutic RAI my endo set a TSH goal of 30 but my radiation oncologist said he wanted at least 60, but 70 would be better. He wanted the higher level because he said it was more effective in killing cancer cells when the TSH is higher. This time we're not trying to kill them, just identify them.

I appreciate all the comments but would still like to hear from someone with specific knowledge of how they approached this when they were being scheduled for an uptake scan. Did your endo set a goal for your TSH? If so, what was the number? Did he say he would delay the scan if you were below your goal?

Last edited by Archie343; 09-24-2006 at 04:40 AM.

 
Old 09-24-2006, 07:54 AM   #8
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Re: Talk me out of this...

Hi- Talk me out of this...
Why are you having the thyroid scan? Do your blood levels indicate that it is necessary?

Please read information from the American Association of Clinical Endrocrinologists - **** website that pertains to thyroid scans. According to **** - unless you are hyperthyroid- the scan is "of relatively little value". MDs won't tell you this. Go to a better doctor if you are questioning the advice.

 
Old 09-24-2006, 05:10 PM   #9
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Re: Talk me out of this...

Archie

Are you going to have the thyroglobulin done as well? That is going to be a crucial tumor marker if you are hypo---sometimes small tissue amts. show in the blood and not the scans....

I wonder how the cytomel would impact that?

You should definitely talk to the radiation oncologist about these issues. In your case, this is your first real follow up, and you don't want to mess it up.

I didn't go hypo for the follow up, but my friend stayed on cytomel only (no synthroid) throughout the first 8 months for a scan, treatment, and 2 follow ups, and she really felt okay---she never got as bad as you and I did, and since you aren't having a treatment--you will get on meds right away, this might not feel as bad.

I didn't feel the true effects of hypo after my thyroid was removed for 4 weeks, and my TSH was ready to go by that point (I think above 40). (paperwork dragged it out to the point that I felt so terrible).

I have read of many pp. going hypo for just that 2 week period and being okay---read Benzi's old posts.

Please don't "cheat"---you want to have a great results scan---and you want to know things really are great, because you did your prep right.

Good luck!

 
Old 09-25-2006, 04:35 AM   #10
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Re: Talk me out of this...

Quote:
Originally Posted by Archie Wilson

Yesterday I noticed skin peeling on my hands, a symptom of hypo that I had when I didn't get hormones for five weeks.
I didn't know that was a symptom? I experienced that when I was 5 or 6 years old & have only just found out this year at 38 years old that I'm hypo.

 
Old 09-25-2006, 10:53 AM   #11
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Re: Talk me out of this...

Skim--I'm sure there are other causes as well but when it happens for no apparent reason hypo may be the cause.

Reece--yes, the thyroglobulin level was one of the tests he mentioned. I couldn't recall the name so thanks for reminding me. Since I don't have a thyroid anymore I'm not sure what that test will provide but at this point I probably wouldn't understand--kind'a foggy, ya' know?

I have to weigh my ability to function against the possibility that cheating on the Cytomel will hurt the scan in some way. Based on what folks have said so far on here I'm thinking the impact is not likely to be significant. Unless I misunderstood, your friend took Cytomel right through, scan and all. That suggests there is a disparity in how much importance doctors place on pushing for a high TSH number before an uptake scan, just as there was a wide disparity in what my endo wanted for the RAI treatment (30) and what my rad. oncologist wanted (70). Since everyone wanted the best possible outcome from the RAI treatment I followed orders (I didn't really have much choice since no Rx had yet been written). This time I have a little more control and will probably continue with 12.5mcg (1/6th of the daily dose I was prescribed) until 4 or 5 days before the scan or until I run out--which may happen sooner. At that point I'll just have to bite the bullet and go cold turkey--and to bed.

Thanks to all for your comments and concerns.

 
Old 09-25-2006, 12:06 PM   #12
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skim... HB User
Re: Talk me out of this...

Quote:
Originally Posted by Archie Wilson
Skim--I'm sure there are other causes as well but when it happens for no apparent reason hypo may be the cause.
I think you could well be right that it is a symptom - the skin on my feet is peeling like mad at the moment & I'm still quite hypo(TSH 23)

 
Old 09-25-2006, 01:03 PM   #13
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Re: Talk me out of this...

No, my friend stopped the cytomel 2 weeks before, and she got tired, but not bedridden tired.

Thyroglobulin, is the tumor marker. If you are not on medication, and you have no thryoid, and it is high----it means you have thryoid tissue which needs to be irradicated. If it is not noticeable, and you have no thyroid, then your thyroid cancer is in check.

Why don't you just ask for a thyrogen scan if you can't take it---that would be much better than "cheating the scan" and I think your radiation oncologist would agree to it, if you told him/her your plan.

Call the endo or the radiation oncologist----ask for the thyrogen injections----there's no point in having a test if it doesn't give the right info.

 
Old 09-27-2006, 12:00 PM   #14
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Re: Talk me out of this...

Thanks for the advice, Reece. An automatic reminder popped up when I opened my computer this morning, advising that the blood work is scheduled for next Wednesday, not next Friday. I guess it's time to suck it up and go cold turkey.

I've seen other discussions about the thyrogen injections and gathered that is a very expensive alternative, one many insurance companies will not cover. I will just try to be a good little boy from here...to there. (I've already put on 4 pounds since cutting the Cytomel to 12.5mcg per day; I'll be forced into my bathrobe by the time the scan is done; none of my clothes will fit by then!)

Thanks again to everyone who gave me a piece of their mind.

 
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