# Ive had it!!



## cgoeschel

Going on 1 month with LID and no meds after having TT on June 26th. Blood TSH last week was 41.3 so i figured im getting close although others have been telling me that I should be way over that by now. One week later...get the blood tested again and the levels DROPPED to 40.7!!!! What the hell!!!!!! I believe ive been really good about my diet as far as I can tell. The only thing I ate different is Ive had a couple pieces of London Broil and a couple Smoothie King Carribean Way smoothies that I read on this board were okay to drink. Im lost. Do I have more cancer that they dont know about? Why arent my levels rising more quickly? My toothpaste has carrageenan in it, can that do it. I dont swallow toothpaste but this is how rediculous Ive been thinking of why my levels arent going up high enough.


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## CareBear3030

I've heard that antibodies will keep your TSH suppressed? I am just not hitting that part of my treatment, so I honestly dont have an informed answer. My labs right before surgery with no meds my T3, T4 were coming back down into a "normal" range while my TSH was still undetectable.

Have you asked your doc about thyrogen? I didnt have to ask mine... thats his plan of action. Since my cancer was contained within my thyroid and did not go into any of the lymph nodes he said I was idea for this new way to do things. I will stay on my Synthroid, and do the thyrogen injections with no need to go hypo. I know sometimes you may not be a candidate to do it that way, but maybe worth asking?

I am not too excited about the LID... I'm not so sure I could go a month without eating out?? Geez! LoL!


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## Andros

cgoeschel said:


> Going on 1 month with LID and no meds after having TT on June 26th. Blood TSH last week was 41.3 so i figured im getting close although others have been telling me that I should be way over that by now. One week later...get the blood tested again and the levels DROPPED to 40.7!!!! What the hell!!!!!! I believe ive been really good about my diet as far as I can tell. The only thing I ate different is Ive had a couple pieces of London Broil and a couple Smoothie King Carribean Way smoothies that I read on this board were okay to drink. Im lost. Do I have more cancer that they dont know about? Why arent my levels rising more quickly? My toothpaste has carrageenan in it, can that do it. I dont swallow toothpaste but this is how rediculous Ive been thinking of why my levels arent going up high enough.


What is LID, please? Are you not on thyroxine replacement? What levels do you want to rise?

Sorry but I don't quite understand your post enough to give you an answer.


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## cgoeschel

LID = Low Iodine Diet, I was not on any meds whatsoever before my Total Thyroidectomy on June 26th. I got my pathology report on July 2nd and I was started on 25mcg of Cytomel (T3) twice per day (total 50 mcg per day). I was on that dose until August 13th when I took my last pill and started the low iodine diet to prepare for the RAI I-131. Now Im about a month later with no meds at all and my Free T3 as of August 26th was still 233. My Free T4 was .7 and my Thyroglobulin was .7 and the Thyroglobulin AB was 118. The nurse called me today and said that they were just going to go ahead with the RAI anyway even though I hadnt reached TSH of 50. I said that i could go another week or so on the Low Iodine Diet until my TSH went higher if it was going to increase the chance of a better uptake of the radioactive iodine, so thats what we're going to do. Ive been really good about the diet so I dont think thats it but Im not sure if there's something creeping in that Im unaware is causing my levels of TSH to climb more slowly.


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## Andros

cgoeschel said:
 

> LID = Low Iodine Diet, I was not on any meds whatsoever before my Total Thyroidectomy on June 26th. I got my pathology report on July 2nd and I was started on 25mcg of Cytomel (T3) twice per day (total 50 mcg per day). I was on that dose until August 13th when I took my last pill and started the low iodine diet to prepare for the RAI I-131. Now Im about a month later with no meds at all and my Free T3 as of August 26th was still 233. My Free T4 was .7 and my Thyroglobulin was .7 and the Thyroglobulin AB was 118. The nurse called me today and said that they were just going to go ahead with the RAI anyway even though I hadnt reached TSH of 50. I said that i could go another week or so on the Low Iodine Diet until my TSH went higher if it was going to increase the chance of a better uptake of the radioactive iodine, so thats what we're going to do. Ive been really good about the diet so I dont think thats it but Im not sure if there's something creeping in that Im unaware is causing my levels of TSH to climb more slowly.


Thank you so much for clarifying that. That was some hefty dose of Cytomel. Your TSH is where right now?

You sure have been through the war here. I don't blame you for being aggravated.

Keep the faith though as you are "almost" around the corner.


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## cgoeschel

As of this past Tuesday morning, it was 40.7. I told them I wanted to wait one more week because they said they were just going to schedule the RAI anyway. Im going to get my blood drawn on Monday and just tell them to start the process because I hear it can take a few days or so and if it finally does do the drop off, I dont want to be scrambling around feeling like crap while they're trying to get me in the hospital. I had a friend just go through this and his TSH went from 98 to 198 in two days and he felt like he was going to die. They told him it can cause kidney problems with creatinine? Anyway...dont need that...I just want to get the RAI and move on.


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## CareBear3030

I applaud you for being so diligent on your LID diet!! I'm not looking forward to my 2 weeks AT ALL!! I have found tons of resources for cookbooks, recipes and rules, but would you care to share a few days worth of your actual menu?

It would help me to see what people are actually eating. I can see I'll be living on bananas, cantelopes, watermelon, egg whites veggie scrambles, and potatoes w/no skin of course....

Good luck! I certainly hope you have your RAI date soon!


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## Andros

cgoeschel said:


> As of this past Tuesday morning, it was 40.7. I told them I wanted to wait one more week because they said they were just going to schedule the RAI anyway. Im going to get my blood drawn on Monday and just tell them to start the process because I hear it can take a few days or so and if it finally does do the drop off, I dont want to be scrambling around feeling like crap while they're trying to get me in the hospital. I had a friend just go through this and his TSH went from 98 to 198 in two days and he felt like he was going to die. They told him it can cause kidney problems with creatinine? Anyway...dont need that...I just want to get the RAI and move on.


Very excellent; please let us know when you are scheduled for the RAI. Moving on is what it is all about. I applaud you for that!


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## cgoeschel

UPDATE:

Got my third set of blood labs back today. Here's the results:

TSH 1st test = 41.3 TSH 2nd test = 40.7 TSH 3rd test = 44.7

FREE T3 1st test = 233 2nd test = Didnt test for T3 3rd Test = 265

Free T4 1st test = .7 2nd test = Didnt test for T4 3rd Test = .7

What the hell!!!!! T3 isnt supposed to go up unless im taking meds (im not) or there is active cells building hormone (in my opinion, not a good sign) any ideas??? Frustrated!!


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## CareBear3030

How's it going?


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## cgoeschel

Well, Dr is starting the process of setting up the RAI. He said there's a good chance that my surgeon left behind a remnant of thyroid tissue so he's just going to go ahead with the rai and fry the remaining cells. I had my blood tested again on Wednesday for TSH, free t3,thyroglobulin, and thyroglobulin antibodies as well as a 24 hour urine iodide test. We'll see. Still losing weight after being on this wretched diet for 6 weeks! Yuck!


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