[krcole July 24, 2012 at 12:13 am Post count: 6]

#1059227

Hi!

So today I was diagnosised with Grave’s Disease. Tonight, with my insomnia, I fell upon this forum. How thankful I am to see that there are so many other people who have walked this journey and continue to walk this journey. I am near tears knowing that I am not alone today.

At the end of June, I was hospitalized with what they thought was meningitis. They ruled that out and then declared that it was “sepsis.” While trying to rule out every possible option before coming to the “sepsis” conclusion, they did two CT scans during my 5 day hospital stay.

They found a mass. A significant mass in my neck.

So off to the ENT surgeon I went. We made plans to do surgery two weeks from the appointment. Nervous does not even begin to describe those two weeks.

Two days before surgery, my mother (who is retiring this year after 40 years of nursing service) was after me about my continued shortness of breath. For the past three months she had been after me but I kept convincing myself that it was from the recent activity that I had always been engaged in..making the bed, taking out the trash, etc. My mother was never convinced by my explanations but would let it go. So two days before the surgery she made me promise to see my PCP to make sure that it was actually “nothing” before surgery.

So here I am, just before my 31st birthday, sitting in his office and complaining of shortness of breath. He ran some labs and took a chest x-ray.

The evening before surgery my MD called to tell me my thyroid numbers were off the charts. He used words like “hyperthyroid” and “Grave’s Disease.” He said “NO WONDER YOU FEEL SO BAD!” He called the surgeon and surgery was called off until I could see an Endo…due to things like “thyroid storm” and “stroking” during surgery.

So fastforward through the weekend to today (Monday). They were able to get me in to see an Endo MD today…Both the surgeon and my regular MD made calls to make it happen in such a short period of time. He confirmed what my MD already thought. Key dramatic mucis here…Grave’s Disease.

So the traditional options were presented…surgery, the radiation one, and just trying to work through it until the thyroid kills itself.

So that long story to ask this question:

Knowing that they are VERY concerned that the mass is a cancer or lymphoma….that they are going to take it out as soon as possible…What is my best choice?

Logic would tell me that the surgery to remove the thyroid would be best…they are already going to do surgery on my neck to remove the mass…why not just take the thyroid?

I would love to hear the opinions of those who have chosen all options! To see what your experiences have been? Would you go back and choose a different one? Are you convinced that your choice was the best?

I am a person of strong faith. I firmly believe that all of these events have been a blessing. If I hadn’t been hospitalized they would have never found the mass. Had it not been for the upcoming surgery I would have never sought treatment for the shortness of breath. The shortness of breath helped them understand to look for a problem beyond my lungs and took a great step to explore the idea with my thyroid. All leading up to finding the Grave’s Disease and finally realizing why I had felt so horrid for the past several months (about 6 to be exact).

As I move forward to make decisions about the Grave’s Disease AND the concerning mass, I appreciate your thoughts and insight.

Blessings.

[KimberlyOnline Facilitator July 24, 2012 at 10:42 am Post count: 4294]

#1173162

Hello and welcome to our forum. How fortunate that your mom stepped in to help you get a correct diagnosis!

This board has a search function (in the top right-hand corner of the screen), so you can run a search for “ATDs”, “Anti-Thyroid Drugs”, “RAI”, “radioiodine”, “thyroidectomy”, “surgery”, etc. to read stories from other patients.

You can find some info on the risks and benefits of the three options in the “Treatment Options” thread in the announcements section of the forum.

I have been taking anti-thyroid drugs (Methimazole) for going on 5 years now, and plan to stay the course with this treatment unless there is a medical reason (complications with white blood cells or liver function) for me to move on to a more permanent treatment option.

However, the fact that you are dealing with a significant mass will certainly affect your treatment options. One presenter at our Boston conference noted that it is advisable to try and get a definitive ruling on any suspicious nodules prior to proceeding with treatment. The *vast* majority of nodules are benign, but if there is any malignancy involved, surgery will become the preferred treatment option.

Take care – and keep us posted on how you are doing!

[Carito71 July 24, 2012 at 11:05 am Post count: 333]

#1173163

Hello. Welcome to the forum. I’m Caro.

I’m so sorry to hear that you have ended here because of you diagnosis of GD but I’m happy to read about your positive outlook. I do feel it is a blessing having been diagnosed and having an answer to why you have been feeling sick. You can’t fix a problem unless you know what it is … right?

I’m new here too. I just joined in early June when I was diagnosed after having been in the ER with tachycardia. I’m currently on Methimazole 30mg/day and I think it is the right choice for me right now. My thyroid ultrasound showed zero nodules and as per my last Endo appt, it is 2 grams, which I believe is the size of a normal thyroid (I have to ask him about this at next appt). My lab work shows that there is nothing else wrong with me.

You have two situations going on. On one hand you have the mass which could be (hopefully it is not) cancer. On the other you have hyperthyroidisim, which if left untreated can cause serious damage. I guess the best solution is having your Dr.’s help you decide how to approach both at the same time keeping in mind which of the three thyroid treatments is a lesser risk in your case. As far as the thyroid treatments, all 3 have their risks but your Drs should be able to tell you which one has the least risk for you since you will have the mass removed as soon as possible. Did the Dr. say they could do both surgeries at the same time? Did they think all three options where the same for you as risks went? Did they have an opinion as to how to proceed? I just keep thinking that with RAI you will feel sick at first because the thyroid will take time to die off (if it dies off on the first treatment). The Rx route also takes time to heal. I’ve started week 6 on the Rx and just last week did I start feeling more like myself. The surgery I have been told is not done until the thyroid #s are normal but there are ways to make the surgery happen even if they are not normal. It is a tough decision but I think your Drs. are the best ones to help you make a decision.

I’m so glad you have your mom on your side and that your Drs are aware of what is going on.

Please keep us posted on your decision. Best wishes!
Caro

[adenure July 24, 2012 at 11:12 am Post count: 491]

#1173164

Hi!

Don’t you love moms??!! They’re the best! My mom factored into my healing through my Graves journey as well! I too am a person of faith and I’m not a believer in coincidences. My Graves was discovered after I had my 4th baby, but more because of an allergic reaction triggered by azithromycin. I chalked up my symptoms to post partum issues and being tired, run down. The azithromycin episode pushed my body over the edge and got me into the doctor to have blood work and diagnose hyperthyroidism with a referral to an endo who did more blood work (antibodies as well) and diagnosed Graves which was further confirmed with an uptake scan. If it hadn’t been for my scary bout with azithromycin, I would have probably kept thinking it was all baby related!

I started methimazole (5 mg daily) for 7 weeks, but it raised my liver enzymes 8 times the normal amount, so I had to stop taking it right away. It did level out my hormones fortunately, so I was able to have a total thyroidectomy 5 weeks ago. I was not comfortable with RAI for many reasons, but I know that it is the right choice for others. The first surgeon I met with left me uneasy, so my mom (here’s where mom comes in!) told me to come out to where my parents live in CT and have the surgery done there by a surgeon she’s worked with and knows well. She’s a surgical technologist (has been for 20-25 years- not sure exactly). She called her anesthesiologist friend as well and basically assembled her favorites for me! Wow, what a blessing. Plus, we stayed at my parents for 2 weeks- made it a family vacation of sorts and I was spoiled as I recovered. Very, very grateful indeed. My surgery went super well with no complications. I was a good candidate as my thyroid levels were normal, I took SSKI (potassium iodine) drops 7 days before surgery to shrink my thyroid and draw blood away from it to make the surgery safer, my heart rate was fine, and apart from Graves, I am a healthy person.

Right now I’m on the hormone journey- waiting to get labs to get the Synthroid dose right, requires patience and I have headaches, hard time sleeping, and I don’t feel quite right, but I know that with time it’ll get better . It’s a journey, that’s for sure. I am happy with my decision to go with surgery; that isn’t to say RAI is a bad choice or that long term ATD’s are a bad choice. I probably would’ve tried for remission if my liver hadn’t had such a hard time, but knowing for sure that hyper symptoms won’t be visiting me again is a nice relief.

It sounds like, if you are able to get your hormone levels normal, surgery would be a good option for you due to the mass found. I had nodules, but they weren’t very big; they tested them after surgery and were benign. Good luck to you & stay in touch.

Alexis

[snelsen July 24, 2012 at 12:11 pm Post count: 1909]

#1173165

Hi, welcome to this forum. It is the best there is. So glad you found us!~

You have certainly had a eventful medical ride lately! The diagnostic trail of events is really an amazing one. I am surprised that you did not have a thyroid panel drawn long ago. Sounds like your mom was having reservations about all that was going on, and I sure am glad that she expressed her concerns.

Well, in reading your post, I am not sure if the mass *is* your thyroid gland. Or is it a “different” mass?
As Kimberly said, many people have thyroid nodules which don’t mean anything, and are benign. Your docs will confirm that.
So, as others have said,you have two issues-maybe.

One is Graves’. That cannot be ignored, or untreated. I’d like comment on the option of your comment of just working through it and waiting till the thyroid kills itself. That is not an option, perhaps there was a misunderstanding about that choice. I believe you know the three options of surgery, RAI and ATD’s.

The other is the mass. If, indeed it is a mass separate and different from an enlarged thyroid gland, I would imagine the docs will order further tests, perhaps more labs, to have an idea what they are dealing with. I would imagine, too, that it seems that someone would tell you that they would like to biopsy the mass first. At this time, from what you said, there is no documented evidence that it is malignant or benign. Or maybe you did not address it in you post.

I imagine your endo will want to have you take an ATD anti thyroid drug, and perhaps a beta blocker, if your heart rate is high or if you have other cardiac issues probably related to Graves’.

If you have a thyroidectomy, there is a preparation for that, and you will learn about it from the docs and on this site from those of us who have chosen surgery.

If there is a discrete mass in your neck that needs to be addressed, ie, excised, I imagine you will be seeing more surgeons, possibly an ENT surgeon as well as a general surgeon. Sounds like there is a lot to sort out.
It is a good idea, as your mom knows, because she has worked in health care all these years, to be very vigilant and ask many questions. I am a big proponent of 2nd opinions. And 3rd opinions. This is a very interesting experience, especially when the reports differ, sometimes contradict, what you have heard from the first docs. And where they all agree, and confirm the diagnoses, it is very reassuring.
Do write again as the days go by, you have a whole forum of new friends, and good ones, too!
Shirley

[catstuart7 July 24, 2012 at 4:08 pm Post count: 225]

#1173166

Hi krcole, you are on quite a rollercoaster ride! I hear you about the dramatic music….it is such a serious moment when you are told you have Graves, even the name of it sounds awful. It sounds like you’ve got lots of doctors taking your condition seriously though so that’s good. How big is this mass in your neck? Have they considered doing an FNA (fine needle aspiration) biopsy first before just jumping right ahead to thyroidectomy? Benign thyroid nodules are not uncommon with Graves.

[Carito71 July 25, 2012 at 8:58 am Post count: 333]

#1173167

I’m too wondering if the mass is on the thyroid or some where else in the neck. Good question. 😎

[krcole July 27, 2012 at 12:25 am Post count: 6]

#1173168

Hi!

I hope everyone is doing well and looking forward to the start of the weekend!
Things keep moving at lightening speed here…

So…A few more details to questions and an update!

First…The mass is somewhere else in my neck about is about the size of a quarter to half dollar. It is too deep to do a needle aspiration for it to be successful. To even try the aspiration they would have to put me to sleep so it was decided to just removed it then get a conclusive biopsy.

Second…They believe that my thyroid has been bothering me for more than a year now and really my only options are the RAI and surgery. They think that, if I just tried the meds, the thyroid would just be too damage to recover until a type of “death” occured. About January of this year, I suddenly dropped 30 + pounds. I thought I just was losing weight after being off some steriods (I have lupus on top of everything else). So…this has been going on for a while and the MDs feel like a year or more is conservative…with some/most of the symptoms being masked as the lupus until recently.

Third…Until the future I am taking an anti-thyroid and beta blocker. The blocker I look forward to finishing because it is making me short of breath…the ENT says that it is because of the lungs are not actually needing a blocker…but the heart and thyroid do.

The UPDATE:

Surgery has been set for August 7. The MD that I really trust has had several convesations with me over the past few days. He has helped me balance out all the options and I feel really good about this one after hearing/reading/and talking about them all. I also look at it this way…I am going to have surgery on my neck anyway…why not just do it all at once…why drag this out over two different procedures.

So that is that. Now for a week and a half of worry and being anxious. I am going to have to work really hard at surviving that part of the whole ordeal. Telling myself I can do it and lots of prayer…I will make it. The surgeon also sent me home with some meds to help with the anxiety…which will be VERY helpful!

After that, the worse thing I’ll have to deal with will be my mother reminding me that I should listen to hear when she tells me “You are short of breath!” I don’t think she is going to let me forget that part!

Thank you all for your help and support. I will keep ya’ll posted on how things go over the next week or two.

Your prayers and thoughts are coveted!

Blessings,
KRCole

[Carito71 July 27, 2012 at 12:37 am Post count: 333]

#1173169

KRCole,

Hello! I’m so happy that you have come to a decision about your thyroid. It is a good feeling, I’m sure, knowing that you now how a plan.

I’m also glad it is all happening fast for you and that the surgeon will work on both the mass and the thyroid at once.

I too have another autoimmune problem … Celiac. I was told by my Dr. that one autoimmune problem made it more likely to having more than just one … such as GD.

I’m sorry the beta blocker is keeping you short of breath. My first beta blocker wasn’t working too good for me and it had to be changed to a different one (from Propranolol to Metoprolol) and now things with my heart are going better.

I’m so very happy for you that your mother is there by your side and helping you through all this. My dear mother helped me through so so much when I was first diagnosed. She lives in a different city but makes sure every day that I’m doing well. Thank God for our wonderful mothers

Please keep us posted. We’ll keep you in our thoughts and we’ll be thinking about you on Aug. 7th.

Smiles,
Caro

[KimberlyOnline Facilitator July 27, 2012 at 9:00 am Post count: 4294]

#1173170

Thanks for the update! If the shortness of breath persists, I would continue to ask your doctor’s office about this. I’ve never been on a beta blocker, but shortness of breath is one of the first symptoms that I notice when swinging hypER. Wishing you all the best!

[gatorgirly July 27, 2012 at 9:10 am Post count: 326]

#1173171

Carito – what wasn’t working with propranolol? I have been on it for 2.5 years now. It’s doing what it’s supposed to do – slowing my heart rate down. I am down to 10mg every morning but if I have more than one glass of wine in the evening, I find I need another 5mg. My LDL doubled after I started taking it, so my endocrinologist was eager to take me off it, but we just can’t seem to regulate my heart rate without it. My new endo did mention there are “better beta blockers than propranolol.” Like krcole, I also find myself short of breath often, but I attributed that to the palpitations…maybe it IS the propranolol. Next time I see him, I’m going to ask about metoprolol or any other BB that will not drive my LDL through the roof. My goal is come off it completely with six months.

krcole – sorry to hijack your post but I figured my question to Carito about propranolol might be of interest to others on here as well. I hope you find the surgery brings relief. It sounds like this is just one more thing you don’t need to deal with and I wish you the best.

[krcole July 27, 2012 at 11:18 pm Post count: 6]

#1173172

Hi!

I will definitely keep ya’ll posted. I also appreciate all the encouragment and advice. Especially seeing the comments about the beta blocker!

My mom won’t be able to come for surgery (I live on the West Coast; Mama and Daddy live in MS). My sisters will be here (they live out here with me). I will have them post after surgery to let everyone know how things went!

Again, thank you so much for being there and for everything ya’ll are doing to support me! No matter, day or night, I know that someone is out there and knows what the heck I am feeling. That thought gives me overwhelming comfort.

Blessings,
KRCole

[catstuart7 July 28, 2012 at 1:10 am Post count: 225]

#1173173

Hi Krcole, I’ll be rooting for you too! Individual beta-blockers do vary in how intensely they can cause the shortness of breath symptom. I had it a while back after taking atenolol for a year, but later was able to take metoprolol without a problem. All of the drugs have different half-lives too with propranolol being the shortest, so to get more even effects on your heart rate a switch to one of the other blockers might help you too. Good luck on your surgery!

[krcole August 15, 2012 at 11:06 pm Post count: 6]

#1173174

Hi Everyone!

I wanted to give a post surgery update.

A brief recap to remind and catch up everyone…At the end of June, I had an infection that kept me in the hospital for 5 days. While working up the infection they found a mass in my neck. They referred me to a surgeon for removal. During the pre-op work up for surgery (two days prior) they tested my thyroid due to complaints of some shortness of breath. Turns out I had Grave’s. Surgery was canceled, I saw an endo, and then surgery was rescheduled to include the removal of the thyroid plus the mass. Now to the update…

So I went in for surgery on August 7 to remove the thyroid and the suspicious mass.

The surgery went great. The mass that they were so worried about was a begnin tumor. Most likely a one time occurance and nothing I should worry about again. As custom for all thyroid removals, they also sent the thyroid to pathology.

Today I had my post op appointment with the surgeon. He came in with the pathology report re: the thyroid.

There is no pretty way to say it…he did a really good job; but I can’t…I have thyroid cancer. He said that he had seen the mass on the thyroid when he got in there. It was fairly early, but as with all cancers despite removal attempts…there is going to be follow up treatment. I am being rushed back to the endo MD tomorrow afternoon.

This story has taken another turn in the events of all the other craziness and this one, for me, is very scary. I am a hospice chaplain. I know what cancer can do.

New question:

DOES ANYONE HAVE ANY EXPERIENCE SUCH AS THIS? ANY ADVICE? How do things like this happen! We are going to talk about the RAI and traditional radiation tomorrow. Please, if you have walked this road…I would love to hear from you.

Again, as it is late at night, I am up and you are here in spirit with me. In the shock of the visit today (they had alleved my fears of the mass almost instantly so never did I imagine a cancer dx today), I got lost and it all became a blur. I didn’t cry. All I could done was laugh at the absurdity of this moment and the past two months. I am sure he thinks I am crazy! With all the hormone changes I have been crying like crazy at magazine articles, tv commercials, the Olmypics. This moment was the only laugh today…until I began to process the statement “I have cancer.”

I appreciate your support, thoughts, and prayers. Just knowing that you are all here as a resource and support group has helped so much and helped me smile several times of the last week.

Know that I also keep ya’ll in my thought and prayers.

As we continue to walk this journey…

Katie

[karebear August 16, 2012 at 8:50 am Post count: 5]

#1173175

First- Breathe. Second ((((( Katie)))))
Now, my Dad had thyroid cancer and lived to a ripe old age. I have had two different types of cancer and I’m groovy. Cancer DOES NOT have to mean a death sentence. Remember that!!!!!
My Dad had his thyroid removed and some radiation. He took thyroid meds. He lived a full, active, normal life.
Sending up lots of prayers for Katie!!!!
– Karen

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