# RAI and delayed side effects?



## Tara1313 (Mar 11, 2014)

End of Aug I received 125 dose of RAI. I had no side effects thank goodness. But, I also drank so much water that the next day I only had 22 of radiation left in me. And the tech that cleaned the hospital room told me that he thought that I didn't even stay in the room as it was super clean from radiation. Usually they have to clean twice and with me they did not. Which was a relief as then I wouldn't hurt my family four days later.

To my question, currently, I have this mind blowing headache for over a week. I went to my chiro and he said that I might be inflamed cause he really couldn't adjust me-my body just doesn't want to. I have taken benadryl thinking maybe it is allergies, I have been taking at the same time tylenol and ibuprofen and it isn't taking the pain away. I just called the dr. at nuclear medicine asking if this could be a delayed reaction to the radiation, as I know that my salivary glands and taste could have delayed issues-I was told that there is no way. But, we all know that sometimes they are wrong. I have a call out to my PCP to check me out, but he can't see me till Thursday.

Anyone that had RAI- did you find that you had headaches a month after?

Thanks
Tara


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## joplin1975 (Jul 21, 2011)

I did not...but I'm wondering if its more due to your meds, and not RAI. I know I had knock-me-down type headaches when I was hypo. I'd be fine one day and then the next I'd be in agony from a migraine-like headache. When did you last have labs drawn?


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## Tara1313 (Mar 11, 2014)

I am due to have them drawn. I last had them done end of Aug and they finally moved from like 2.43 to 1.7. So we upped my dose and now I am wondering if you are correct if my numbers are where they should be and I am dying with these headaches for over a week. Never going away right now for over a week. I am calling my dr. as I type this.
Thanks

Tara


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## Tara1313 (Mar 11, 2014)

Joplin you are always so helpful. and with information I can work with. I am so sick of these nurses that think they know everything. I left a message with a nurse for my PCP. Stating that I am not sure if I am sick etc. and that I don't want to go to Urgent care because that is for emergencies and this feels more chronic and currently with all of my issues. I tell you this nurse fought me on getting the message to the dr. "of course, Urgent Care will look into your history you don't have to speak to your PCP...." so thankfully I am in a place that they cannot intimidate me anymore. I said, "just give him the message thank you" she did and he called me saying that he was able to push me in for Thursday and that he doesn't want me going to Urgent Care they won't help me. eerrrr. Ego's but I didn't even think it was my meds.

Calling Endo now. You rock!


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## joplin1975 (Jul 21, 2011)

Oh I hope you get some relief soon!!! Those headaches are awful.


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## jenny v (May 6, 2012)

I too get the worst headaches when I'm hypo, it's like a hot knife going through my head and behind my left eye. It's awful.


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## Tara1313 (Mar 11, 2014)

Jenny, I am so sorry to hear. Actually, we checked my numbers and I still need to go lower as my tsh is .4, but it prob isn't my hypo giving me these headaches. My PCP said that I may have lyme disease - the one that doesn't come up on the usual test or a sinus infection. Waiting for dr. to call me back.


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## jenny v (May 6, 2012)

Is your doctor basing your medication just off of your TSH? If so, that's not good. You have no thyroid, you need to go by Free T4 and Free T3.


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## Tara1313 (Mar 11, 2014)

Ok, I discussed with my dr. about my numbers and she even wants my TSH lower. as it was .4. My T3's and T4's Free etc. are fine. I have been tested for Lyme all three types and they are negative. Since i have the headaches my endo wasn't going to increase my meds hoping that I would feel better, maybe I was sick. I waited for all of the lyme tests to come back before I retest TSH. I will do that today. My dr. said that if my numbers were in the area that since my numbers weren't in the place that she wanted them that the amount of meds shouldn't be affecting me badly (exmaple: heart etc) but she also knows that I am always different than the norm.

I have had this NON-Stop headache for about a month now. It is temple to temple and the back of my head. Is that the type of headaches you guys get? At this point, I must be considered Hyper at .4. The meds that I am taking are pure. They are the dye free. Tirosint. How do I word to my doctor that it could or prob is my meds and what can I do about it. In other words, I need the meds cause I have no thyroid. I need a high dose right now so my numbers are low to keep cancer away. And I am the purest thyroid meds there are. What are my options?


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## joplin1975 (Jul 21, 2011)

Wait, first, before you do anything, do you have copies of your free t4 and free t3 results? The whole "they are fine" thing worries me.

But, yes that sounds similar to the type of headaches I got.


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## Tara1313 (Mar 11, 2014)

ugh, no I don't have the test, but I will get it.


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## joplin1975 (Jul 21, 2011)

Yup, get copies, and then we can help make a plan from there. Never accept they "their fine!" or just plain "normal" without seeing the actual numbers.


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## Tara1313 (Mar 11, 2014)

Gotcha, usually this Endo is really on top of it. She has been good at recognizing the numbers if off even if the bloods aren't. But I will see


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## Tara1313 (Mar 11, 2014)

I don't know if you guys ever find this corrolation, but I find that when I love the nurses of a doctor's office - I tend to dislike the dr. But when I love the dr. the nurses are really crappy. With that being said, I asked the nurse to fax me my numbers for my last Free T4 and she finally gave it to me, but they are from when my TSH were high. So I then asked her if the blood request is in the system for me to go get my bloods done? She starts asking me, "when are you going to see the dr. I don't see a scheduled appointment for you? Obviously, if I am asking if the request for blood is in the system- it must have meant that I already saw the dr. I mean if this nurse doesn't always work with Thyroid patients that would make sense. if she normally works with Thyroid patients she would realize that her question is quite unnecessary and annoying. I have headache (LOL) don't ask me more than needed. LOL.

Anyhow, my last Free T4 was when my TSH was high. Free T4 was 1.30 in a range of .71-1.85 and my TSH was 2.42 in a range of .49 -4.70.

Now my TSH is finally .42 yet we want it lower. Today, (if the regular nurse gets it in the system) I will go for my new results TSH, Free t4 and t3. So I guess we'll see. Per seeing the above, what does it say about my free t4?

Thanks

Tara


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## joplin1975 (Jul 21, 2011)

You free t4 is just above midpoint, so you had some wiggle room (at that point) to move up a smidgen.

But, given that your fee t4 was at a decent place, I would bet your free t3 is going to be lower that optimal. Again, that's just a guess.


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## Tara1313 (Mar 11, 2014)

ok, so numbers are in. Free T3 3.9 in a range of 2.3 to 4.2, Free T4 is 1.78 range of .71 to 1.85 and TSH is .10 in a range of .49 to 4.70. They actually want my TSH lower, but since I still have the headaches and the palpitations- My dr. decided to lower my Tirosint back to 225. I am hoping that we were too aggressive with the meds initially and that lowering the meds won't make my numbers go up just my head to stop hurting. About four weeks ago, my TSH was .42 and she didn't up my meds cause I wasn't feeling well. and it went down, so I hope that it will go down a little more even though I am lowering the meds.


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## joplin1975 (Jul 21, 2011)

Well...your numbers don't look too bad. I would have expcted a lower t3 and a higher t4.

I wish I had some other suggestion and hope someone else does, but for now, I hope the dose reduction helps!


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## jenny v (May 6, 2012)

I think it's a good move to lower the Tirosint a bit--your Frees are getting into the high end of the ranges and that might be too high for your own body.


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## Tara1313 (Mar 11, 2014)

Thanks that is what I am thinking. I just hope everything will regulate soon. Thank you


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