The THYROID Thread

Just curious, does anyone celebrate their cancerversary??

I got the idea from the breast cancer sistas.

Mine will be a week from tomm.:):)

The other year the one ds made me a cake to celebrate.

I usually say the day is the date I had my surgery to get these tumors out etc.

Some people say its when treatment is over etc.

I dont do anything special to celebrate etc. I just feel that me acknowledging it makes me deal with it better etc.

Not really. I'm not even sure what day I would choose. Usually when August passes I say to myself "another year goes by without a recurrence." August is the month I had surgery to remove it all.
 
Hey Christine what actually was your sensitivity to the povidone? (If you don't mind me asking)
 
Hey Christine what actually was your sensitivity to the povidone? (If you don't mind me asking)

Well, it took me awhile to figure out it was povidone but here's the story:

I used to take ibuprofen all the time for menstrual cramps, aches and pains, etc. In fact, I'm sure I abused. Anyway, one day after I took it, about 20 minutes later, I gut an itchy hive on my chest. I didn't think much of it. Figured it might have come from playing with the dog. Then I started to notice that it happened EVERY time I took ibuprofen. So I figured I was allergic to iboprofen and I switched to extra-strength Tylenol. I was fine for a bit on Tylenol but even then I started to get the hive. It was always somewhere on my chest. Occasionally I would get one on my back right at the same level as the one on my chest. It was also only be one singulary, very itchy hive and would disappear in about two hours.

At this point I was getting suspicious but still didn't know what to do. On top of all that, my chest was kind of breaking out all the time and splotchy. I tend to be that way anyway so didn't make much of it.

Then my doctor prescribed Feosol, an iron supplement. I took this and I got a HUGE, and I mean HUGE, hive on my chest. I then realized that I could not be allergic to all of these things. So I made up a spreadsheet of everything thing I took and tried to find the commonality in the meds that caused the hive. The most glaring one was povidone. What threw me is that Synthroid and Sudafed also contain it, yet, I was not having big hives with either of them. After talking to my doctor, he said that it could be a "threshold" thing. Synthroid and Sudafed probably have tiny amounts. Feosol probably has a large amount, and ibuprofen and Extra Strength Tylenol have moderate amounts. But there's no way to tell. I stopped all the other meds with the exception of Synthroid and Sudafed (as needed). I was able to tolerate Children's Liquid Motrin and Regular Strength Tylenol as neither have povidone. I still had a slight, rashy look even after stopping things so I stopped the Synthroid and went to Levoxyl. I still get rashy occasionally, but not like I was. I will occasionally use Sudafed if I have a bad cold and I seem to be okay with it.
 
Thanks Christine! Sorry you had to go through all of that.

I am having some trouble with facial ticks towards the end of the day sometimes. My right eye to be specific. I keep twitching it closed. If I make sure I am aware of it I can stop doing it! Really strange.

Anyone have this happen? Or muscle contractions? I find myself all tensed up sometimes.
 

Thanks Christine! Sorry you had to go through all of that.

I am having some trouble with facial ticks towards the end of the day sometimes. My right eye to be specific. I keep twitching it closed. If I make sure I am aware of it I can stop doing it! Really strange.

Anyone have this happen? Or muscle contractions? I find myself all tensed up sometimes.

Are your calcium levels okay? I think low serum calcium will cause this (damage to parathyroids more specifically).
 
Your endo should be happy with you on any of the brand names: Synthroid, Levoxyl, Levothroid, Tirosint, to name a few. All brand names, all proven effective, and they won't vary month to month.

I actually started out on Levothroid because they made a dose that Synthroid didn't. Levothroid was also $10 per month cheaper for me. Then Levothroid went up in price and, somehow I got on Synthroid. I don't know why. But I took that for years. Once I discovered I had a sensitivity to povidone and it was in my Synthroid, I looked for a thyroid med that didn't have it. That was Levoxyl. And it runs me $10 per month on my insurance or $20 for a 90-day supply.

Good to know....we are still TTC though so for right now I will probably stay on the Synthroid just so I am minimizing TSH changes that are under my control.
 
Are your calcium levels okay? I think low serum calcium will cause this (damage to parathyroids more specifically).

Yes my calcium levels were ok. When he removed my thyroid he was very careful with the parathyroids and said they looked pretty good.

I go back to the endo next month, so I will be sure to ask her.

last blood work on 12/14 was:

CA (calcium) 9.4 (8.4 - 10.6)
TSH .056 (.03 - 4.00)
Free T4 1.23 (.71 - 1.85)
Free T3 3.1 (2.4 - 4.2)

Do these seem ok? The doctor seems to think so.
 
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Yes my calcium levels were ok. When he removed my thyroid he was very careful with the parathyroids and said they looked pretty good.

I go back to the endo next month, so I will be sure to ask her.

last blood work on 12/14 was:

CA (calcium) 9.4 (8.4 - 10.6)
TSH .056 (.03 - 4.00)
Free T4 1.23 (.71 - 1.85)
Free T3 3.1 (2.4 - 4.2)

Do these seem ok? The doctor seems to think so.

Yes, they seem really good. Is your lab range really .03 - 4.00? Mine runs 0.3-4.00. If your range is really 0.3-4.00 and your TSH is .056, then you could be dealing with a hyperthyroid issue which could explain the symptoms.
 
Oh, you are right. It reads .3 - 4.0.
My TSH is .56.
Oops!
 
Back from the endo.

I think I got some of the numbers wrong because it was just crazy busy there and I had a resident on top of that too.

The endo said my sono was great and my bp was great too 128/70, so the new med is really working well.

She said my labs were great too. She said my Tg was less than 0.2 so that is undetectable. (I hope I have that number right) and then she said that my tsh is .05. This is where I cant remember. It could have been .5. But she said that I am still too hyper and since all my testing has been coming out good, she has to balance out the high synthroid dose with the heart palpatations and worse the osteoporosis, since the high dose ruins your bones, which in my case it probably is doing due to the dexa scan and already getting one reclast infusion. She said she wants to get the tsh down to 0 too??

So she is lowering my synthroid to 150. I have to get a blood test in 6 weeks. She said dont throw out your old synthroid yet, because we might have to sub the higher dose a day or two a week etc. Its a balancing act she has to work n but she said she will work on it etc.

I did ask her if she had any other patients with columnar cell variant. and she said she had a few, but they only have really small, small tumors. She said, yours by far is the biggest one I have (12.5 plus the other 4 cm one.) I joked and said, well I guess its good to be remembered for something.:)

She commented - Oh I knew you were going to do really well?? Hmm, the rad onc. never even said anything like that to me, not once ever. Of course the surgeon never said anything all that much, especially since he almost killed me.

Dh said, she said, well its been almost 4 yeas. I honestly didnt hear her say that, but its really only almost 3 etc.

So we shall see how this all works out, but I am praising God for the good news. With everything else that is not going well with our family, I sure could use that good news, its like a ray of sunshine:)

Dh said, lets go out to dinner to celebrate.:banana:
 
Has anyone ever taken cisplatin? Just read an article describing it as the leading treatment for a list of cancers including thyroid, & I've never heard of anyone taking it. From what I can google I'm guessing it my be a treatment for recurrence & if that's it then here's hoping we never do.
 
I think one of the breast cancer girls did that chemo.

Is that chemo for anaplastic or medullary or for late stage pap or follicular? Just curious as to what the article said.

One of my surgeons told me that if mine was not responsive to the rai then they might try external beam on me. The rad. onc. never mentioned even that to me.
 
Jenn - and if you are reading along, can you please comment on what the tear duct plug procedure entails.?

I know my eye surgeon didnt mention it, but due to all my personal family problems now, I dont know if I can go through all of that surgery right now, so I am thinking I might ask her about this option. I am suppose to call soon for an appt. as I think her maternity leave is over soon.

Specifically I am interested in the procedure, pain or more needles in the eyes? Do you notice them etc. etc.

Thanks so much.
 
Thyroidectomy went great on Wednesday, already off the pain meds and I feel great! Went back yesterday for dr to remove the drain, and it's already healing.

I have my followup on Wednesday and I get the biopsy results then. Also, I'm guessing they will test my hormone levels that day for the first time since removing part of my thyroid? Dr is hoping I won't need meds, that the remaining thyroid will pick up the slack?

Of course, I have not seen an endocrinologist, this has all been handled so far by my ENT......
 
Thyroidectomy went great on Wednesday, already off the pain meds and I feel great! Went back yesterday for dr to remove the drain, and it's already healing.

I have my followup on Wednesday and I get the biopsy results then. Also, I'm guessing they will test my hormone levels that day for the first time since removing part of my thyroid? Dr is hoping I won't need meds, that the remaining thyroid will pick up the slack?

Of course, I have not seen an endocrinologist, this has all been handled so far by my ENT......


So very happy to hear that everything went well for you. I cant believe the drain came out so easy too. My one in the hospital hurt a little, but the other one I had in for weeks. I had the dr. give me a shot of lidocaine before he took it out. Didnt hurt at all then.

Wishing you all the best with the results on wed. Keep us informed.

Glad you are feeling better, but I would take it easy for a little bit. Heah, let everyone wait on you for a while!
 
Thyroidectomy went great on Wednesday, already off the pain meds and I feel great! Went back yesterday for dr to remove the drain, and it's already healing.

So happy it went well!


LMP- the article described that drug as "the leading treatment for" and listed several types of cancers, including thyroid.
 
Good morning everyone.

I am here today because there is gong to be a virtual...party::rockband::dance3::cheer2::cheer2: party to celebrate...

my 3 year cancerversary!!!

Praise God that 3 years ago today I had 3 surgeries in 14 hours, 11 hours of surgery and was in the coma for 2 days after nearly dying and I am still here today!!

Thank you all for letting me vent, for Chrstine for your wealth of knowledge and for those who have gone through all of this and will go through this too, thanks for being inspiring and listening and encouraging etc.

You are all a great bunch of dis'ers.

Blessings to you all always

Now you can all have a virtual piece of :cake: to celebrate along with me.
 














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