# My story...



## llhg71

In March I developed a sore throat that would not go away. The night before I was to go to the doctor, I noticed a small bump in my thyroid area above my collar bone. I went to the doctor and was prescribed an antibiotic for the sore throat. After two weeks, the sore throat went away but the bump didn't. It got larger. So back to the doctor I went. Blood work and an ultrasound was completed. The ultrasound showed a 2cm x 2cm x 3cm nodule. My labs were fine. I convinced my PCP to refer me to an endo.

In May, the endo. completed an FNA biopsy which came back benign.

In June I started having pain in the right side of my neck (same side as the nodule). I convinced my endo. refer me to a surgeon.

In August, the surgeon set me up for surgery and ordered a ct. The ct showed no enlarged lympnodes but the nodule had grown a little bit. On August 25 I had my total thyroid removed.

Last week I received the pathology report of papillary cancer. My tumor size was 2.5cm. The endo. is now wanting me to go off of my synthroid for 4 weeks before the body scan and such. I'm not sure if I can do it??? I am so tired of having to fight for my healthcare.


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## Octavia

I'm sorry about your diagnosis. You'll get through this. You were smart to trust your instincts.

Stopping the synthroid for several weeks before your body scan is standard protocol. You can do it!!! It's the only way to get a good, reliable reading on the scan. Many of us on this forum have lived through it, and it will be over before you know it. Yes, you'll be tired and foggy, but it may not be as bad as you think. I was only a little tired...not bad. Maybe you'll be the same!

Hang in there!


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## Andros

llhg71 said:


> In March I developed a sore throat that would not go away. The night before I was to go to the doctor, I noticed a small bump in my thyroid area above my collar bone. I went to the doctor and was prescribed an antibiotic for the sore throat. After two weeks, the sore throat went away but the bump didn't. It got larger. So back to the doctor I went. Blood work and an ultrasound was completed. The ultrasound showed a 2cm x 2cm x 3cm nodule. My labs were fine. I convinced my PCP to refer me to an endo.
> 
> In May, the endo. completed an FNA biopsy which came back benign.
> 
> In June I started having pain in the right side of my neck (same side as the nodule). I convinced my endo. refer me to a surgeon.
> 
> In August, the surgeon set me up for surgery and ordered a ct. The ct showed no enlarged lympnodes but the nodule had grown a little bit. On August 25 I had my total thyroid removed.
> 
> Last week I received the pathology report of papillary cancer. My tumor size was 2.5cm. The endo. is now wanting me to go off of my synthroid for 4 weeks before the body scan and such. I'm not sure if I can do it??? I am so tired of having to fight for my healthcare.


Maybe you could find out from the radiology dept. if you could take T3 in the interim and stop that about a week prior? (Cytomel, 5 mcg., low dose)

That is some story. Had you not gone to the surgeon, you would be in serious trouble at this point.

Glad you are here with us and you are through the worst part to keep the faith.

Have you had RAI or will you?


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## webster2

llhg71 said:


> In March I developed a sore throat that would not go away. The night before I was to go to the doctor, I noticed a small bump in my thyroid area above my collar bone. I went to the doctor and was prescribed an antibiotic for the sore throat. After two weeks, the sore throat went away but the bump didn't. It got larger. So back to the doctor I went. Blood work and an ultrasound was completed. The ultrasound showed a 2cm x 2cm x 3cm nodule. My labs were fine. I convinced my PCP to refer me to an endo.
> 
> In May, the endo. completed an FNA biopsy which came back benign.
> 
> In June I started having pain in the right side of my neck (same side as the nodule). I convinced my endo. refer me to a surgeon.
> 
> In August, the surgeon set me up for surgery and ordered a ct. The ct showed no enlarged lympnodes but the nodule had grown a little bit. On August 25 I had my total thyroid removed.
> 
> Last week I received the pathology report of papillary cancer. My tumor size was 2.5cm. The endo. is now wanting me to go off of my synthroid for 4 weeks before the body scan and such. I'm not sure if I can do it??? I am so tired of having to fight for my healthcare.


I am sorry about your diagnosis. It is getting to be to the norm to have to fight to get treated properly. Please know that you will have support here. I am not due to have a full body scan until late fall. I wish you the best during your time without synthroid, but you really need to have the scan. Welcome to the board.


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## CLRRN

Hey there...sorry about your diagnosis. I had similar symptoms; sore throat, lump. I had a partial thyroidectomy on 8/16 and the path was positive for follicular carcinoma (2.4cm) and then had the rest of the thyroid removed on 8/23. I was started on cytomel after surgery (because thyrogen is not available). I see the ENDO on 9/13 to get the rest of the game plan. I was told that I would receive RAI 6 weeks after surgery. It sounds like we might be on the same schedule. Hang in there..we can do this together!!!


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## Octavia

CLRRN said:


> Hang in there..we can do this together!!!


That's the spirit!!! hugs1


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## llhg71

Thank you for all of the wonderful heartfelt responses...hugs4


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## I DClaire

Until fairly recently, a couple of years ago, I honestly never gave a thought to my thyroid. I never gave any thought to thyroid problems nor thyroid cancer. From what I have learned one question arises - is there any other serious health problem where the patient has to be a more determined advocate for their own diagnosis and treatment?

You knew your own body and you stood up for what you knew you needed.

I don't know what going off Synthroid will be like for you but it sounds like you have a lot of courage, wisdom and determination. Considering how far you've already come, I suspect you'll find a way. You inspire me!!


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## Andros

CLRRN said:


> Hey there...sorry about your diagnosis. I had similar symptoms; sore throat, lump. I had a partial thyroidectomy on 8/16 and the path was positive for follicular carcinoma (2.4cm) and then had the rest of the thyroid removed on 8/23. I was started on cytomel after surgery (because thyrogen is not available). I see the ENDO on 9/13 to get the rest of the game plan. I was told that I would receive RAI 6 weeks after surgery. It sounds like we might be on the same schedule. Hang in there..we can do this together!!!


Good to hear from you; how are you feeling these days?

Keeping you in my prayers. The good news is the worst is behind you now.


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## llhg71

Today is my 6th day without synthroid. So far it hasn't been too bad. Some of my symptoms are: fluid retention, feeling sluggish and having joint pain. I'm basically feeling like I did before the surgery. Lol!!! Just 3 more weeks to go.


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## Andros

llhg71 said:


> Today is my 6th day without synthroid. So far it hasn't been too bad. Some of my symptoms are: fluid retention, feeling sluggish and having joint pain. I'm basically feeling like I did before the surgery. Lol!!! Just 3 more weeks to go.


It's a bump in the road to be sure and I hate this for you but it will be over soon and you will be back in recovery mode before you know it.

What a difference thyroxine replacement can make! It staggers the mind really and this is only what, 7 days now? Aaaaaaaaaaaaaargh!!


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## llhg71

I have been without my medication for 16 days and I started my iodine free diet yesterday. I believe that yesterday has been the hardest day for me mentally so far. I'm not sure why. Maybe the diet restrictions actually made me mentally realize that I have cancer. I fought a little depression and shed a few tears. Today has been a much better day. Physically, I am having the basic symptoms of fatigue, memory issues and fluid retention.


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## CLRRN

Hang in there!!! I'm right behind you. I stop cytomel on Friday and start LID. I know this process is challenging. I'm thinking of ya!!!! xoxo


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## llhg71

Today is 25 days without synthroid and 10 days into my low iodine diet. First of all, this diet sucks.. Positive side is that I have lost 3lbs. I had my TSH labwork done today and I am at 63.3. I will see the endo on Tuesday.


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## Andros

llhg71 said:


> Today is 25 days without synthroid and 10 days into my low iodine diet. First of all, this diet sucks.. Positive side is that I have lost 3lbs. I had my TSH labwork done today and I am at 63.3. I will see the endo on Tuesday.


Never mind the question I asked on your son's post there about you and thyroxine replacement. Got my answer here. LOL!!

LHM (Lord have mercy); you must feel awful. I hope they get this over with and soon.

Take care,


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## llhg71

When I start back on my synthroid, should they titer it or start the full amount?


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## Andros

llhg71 said:


> When I start back on my synthroid, should they titer it or start the full amount?


Let's hope they can start you back at least on 1/2 of the amount. That would be maybe okay? It's not like you are not used to taking it; ya' know?

I hope so because you need to get your life back on track fast.

And, they have to now keep your TSH suppressed so I would like to think they are going to hop right on it. Maybe a little Cytomel also?

Guess we will have to wait and see. Wah!


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