# Need advise-so confused! Newbie



## bosox10 (Jun 9, 2011)

Hi all. So I guess I'm not losing my mind after all and my symptoms WERE real! Quick background...

About 2 weeks before Memorial Day, I got the shakes real bad to the point where I couldn't lift a glass of water to my mouth without it sloshing out all over me. I had fallen back in Dec 2010 and landed on my head/neck so my immediate though was maybe a disc injury or nerve damage so that's what I was planning on getting checked out for. I had a lot of other symptoms as well but never thought anything about my thyroid. It got bad enough that I went to the ER expecting them to just do some tests and let me go. Instead, they admitted me for Tachycardia and kept me hostage for 2 1/2 days. They ran some blood tests, did a thyroid ultrasound and echo-cardiograph, and I saw the on-staff Endo for literally 4 min's. He squeezed my neck, told me to swallow, said my Thyroid was enlarged and said they would order the Thyroid Uptake test.

The Blood tests were:

Thyroid Peroxidase AB result 309 ranges 0-34
Thyroglobulin Quant result 122.0 ranges 0.5-55.00 
Antimyeloperoxidase result <9.0 ranges 0.0-9.0
T3 result 9.3 ranges 2.0-4.4

I don't have the individual labs for the following but in the lab data in the medical report says: Sodium 136, potassium 3.6, BUN 15, and creatinine 0.6.
The TSH is 0 and T4 is 14.7.
ALT is 26 and AST is 11

The Ultrasound shows Right Lobe 4.4 x 2.3 x 2.2 cm, Left lobe 3.1 x 1.5 x 2.0, Isthmus is 2mm in thickness. Hypoechoic nodule in the upper pole right lobe measures 3 mm in diameter. Nodule in the lower pole on the right measures 6mm x 4 mm by 7 mm. Hypoechoic nodule in the isthmus measures 2 x 4 mm.

The Thyroid Uptake test says at the 24 hr mark, the uptake is 50% compatible with hyperthyroidism (Just 50%?? Is that definitive enough??)

So I followed up with the 4 minute Endo and he says "3 choices only- med's, RAI or Surgery" Seemed to not want to deal with the med's option as that involved actually working with me and making sure my levels were right...
I don't want surgery and the more I research, I don't think I want RAI.

It's been about 2 weeks now and I'm not taking anything yet for the Thyroid and I know I need too. I still feel like crap, heart is racing, etc. 
I am trying to find a good Endo that I trust. I live within about an 1 1/2 drive from Shands in Gainsville so I thought I would try there.

I guess my questions are:

With the goiter sizes, do you think it's possible to KEEP my Thyroid and manage it will medication?

With the uptake saying it's 50% likely to be Hyper, is that enough to rule out any other issues?

Oh, and I forgot to mention- I have not, am not, losing weight!! Am I the only Graves disease person that CAN'T lose weight?? I've struggled for YEARS with losing weight and finally gave up the diet struggle and just maintain but not 1 pound has come off. In fact, i think I lost a couple pounds from being in the hosp and they came back! My resting heart rate is around 110 and jumps insanely high when I move around doing chores-like to the point where it would be if I were exercising.

Sorry for the long post, but I'm just a little scared and feeling helpless right now. Thanks!


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## webster2 (May 19, 2011)

Hi & Welcome, I am a newbie too. I am not sure about keeping the thyroid. are your nodules hot or cold? I am not taking the RAI. I am pushing for surgery ASAP. I had half taken out 20 years ago. You'll get some great info here. It has helped me to ask the right questions so far. Finding another endo might be a good thing. You want someone you can trust.
Best, Sue


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## bosox10 (Jun 9, 2011)

Hmmm, I haven't heard anything about hot or cold before, guess I have some more questions to ask! I know they said they weren't cancerous but that's all I remember them saying. Good luck with your upcoming surgery!


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## Andros (Aug 26, 2009)

bosox10 said:


> Hi all. So I guess I'm not losing my mind after all and my symptoms WERE real! Quick background...
> 
> About 2 weeks before Memorial Day, I got the shakes real bad to the point where I couldn't lift a glass of water to my mouth without it sloshing out all over me. I had fallen back in Dec 2010 and landed on my head/neck so my immediate though was maybe a disc injury or nerve damage so that's what I was planning on getting checked out for. I had a lot of other symptoms as well but never thought anything about my thyroid. It got bad enough that I went to the ER expecting them to just do some tests and let me go. Instead, they admitted me for Tachycardia and kept me hostage for 2 1/2 days. They ran some blood tests, did a thyroid ultrasound and echo-cardiograph, and I saw the on-staff Endo for literally 4 min's. He squeezed my neck, told me to swallow, said my Thyroid was enlarged and said they would order the Thyroid Uptake test.
> 
> ...


Welcome! A lot of us gain weight w/hyper. The symptoms cross over. I am sorry you are hyperthyroid and I can only say what I would do.

Have it surgically removed. Many reasons why but the most important one is to make sure you don't have cancer.

Your Thyroglobulin is kind of high. So is the TPO.

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology...963/?news_id=811&newsdt=092010&subspec_id=419

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract

You just need to be sure; that is what I am suggesting.


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## oceanmist (Apr 30, 2007)

Welcome!

Andros is so right the symptoms cross over and thats what confused me and hubby. In my posts thats why I say I didn't know if he was coming or going, hyper or hypo. After doing a lot of reading and respecting the answers of the people on here that know what there talking about, we decided to go for surgery. Males have a higher risk to cancer. I don't know if some people with Graves get it worse than others but after what Hubby looked like and has gone through there is no question in our minds its going out!

Sorry I'm no doctor, but look at it this way...if your thyroid was a car and the tires were 50% bald that means its the start of something right? Your going to need to get rid of them...one way or the other...you should be running 100%. But who am I to talk I drove all the way home from work with a flat tire...and survived..lol

You'll get your answers here... I vote take it out...

Ocean


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## bosox10 (Jun 9, 2011)

Thanks so much for the words of advise! I am having a heck of a time finding/getting in to an Endo. Is that normal? I finally gave up today and called my GP and asked him to prescribe something for me until I was able to get in. He put me on Methimazole, 10mg, 3x a day. He had to look up what to give me LOL so definitely not his specialty.

How long before I can start feeling the effects of the pill (she asks after just swallowing her first one 12 seconds ago and hoping for a miracle!)

Also, for those that have had surgery to remove it, did the endo do it themselves, or did you have to find a surgeon for that? I'm in the Tampa Bay area and found a great surgeon at Moffit Cancer center but didn't know if I need surgery, do I just pick my own.

Thanks so much for your help and patience!


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## Andros (Aug 26, 2009)

bosox10 said:


> Thanks so much for the words of advise! I am having a heck of a time finding/getting in to an Endo. Is that normal? I finally gave up today and called my GP and asked him to prescribe something for me until I was able to get in. He put me on Methimazole, 10mg, 3x a day. He had to look up what to give me LOL so definitely not his specialty.
> 
> How long before I can start feeling the effects of the pill (she asks after just swallowing her first one 12 seconds ago and hoping for a miracle!)
> 
> ...


Actually, your GP could probably do a better job than an endo. If you have arrhythmia, please ask GP to put you on a betablocker as well.


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## bosox10 (Jun 9, 2011)

Thanks Andros! Yes, the Cardiologist that I saw switched my Betablocker to an extended release one. I just started that today. And today was my first full day of the Methimazole. I hope it's just a coincidence but I suddenly have UTI symptoms. I had my doctor call something in. I'm only allergic to Penicillin and had a slight reaction to Levaquin so hopefully that's not it. I almost felt a bit better today, like calmer..then I went to Target and after about 15 min's of walking around I thought I was going to pass out. Guess I'm expecting too much.

I finally got an Endo appt on July 5th. Hopefully I'll get some more answers then.


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## lavender (Jul 13, 2010)

Endos are hard to get into everywhere, and generally not the most sympathetic doctors. A PCP may not be the most educated, but may be a lot more willing to actually help you. Hyperthyroid screws with every system in your body. I had a strep infection when I was hyper, and every cell in my body was in pain/felt like it was on fire. My liver levels were off, and I had a lot of abdominal pain. Methimazole did help, but it took a while, and never really restored me to full functioning. I had surgery, and would do it again in a heartbeat, and I didn't have any nodules. RAI makes no sense for someone with apparent nodules. Meds may help control your symptoms for a while, but they are very hard to regulate in hyperthyroid, and most people will end up with a relapse of symptoms.

Thyroid surgery is preformed by a surgeon, usually and head and neck specialist. Mine was done by an Otolaryngologist. Ask your PCP for a referral and take some time to pick your surgeon with care. A VERY experienced surgeon is your best chance for a good outcome with few complications. Thyroid removal is very fine microsurgery that involves peeling your thyroid off your vocal chords and separating out tiny grain of rice sized parathyroid glandss to ensure that your body is able to regulate calcium after your surgery. If I had anything I would go back and re-do, it would be to choose a more experienced surgeon. It is recommended to see someone who does over 100 thyroid surgeries a year and has done a minimum of 500.


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## Andros (Aug 26, 2009)

bosox10 said:


> Thanks Andros! Yes, the Cardiologist that I saw switched my Betablocker to an extended release one. I just started that today. And today was my first full day of the Methimazole. I hope it's just a coincidence but I suddenly have UTI symptoms. I had my doctor call something in. I'm only allergic to Penicillin and had a slight reaction to Levaquin so hopefully that's not it. I almost felt a bit better today, like calmer..then I went to Target and after about 15 min's of walking around I thought I was going to pass out. Guess I'm expecting too much.
> 
> I finally got an Endo appt on July 5th. Hopefully I'll get some more answers then.


I am violently allergic to any quinalone. Cipro, Levaquin, Quinalone and so forth.

Dang. What did the doc Rx?? Get that unsweetened cranberry juice going or better yet, get the cranberry capsules. I take 2 (2000 mgs.) every day of my life now. Besides, I get my Vitamin C that way so I am good to go in that department.

Good about the betablocker. You and the doc are on top of it.


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## bosox10 (Jun 9, 2011)

Great advise on choosing the surgeon Lavender, as much as I don't want surgery, that probably makes the most sense since I have nodules.

Andros- LOL, he called in Cipro for me- which caused the pharmacist to call me asking if I was sure, cause I had a reaction to Levaquin years ago. I took the chance though cause it was after 6 on a Friday and I was desperate. So far so good, 3 pills taken so far and no reaction. Fingers crossed. I am adding cranberry pills too though


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## Andros (Aug 26, 2009)

bosox10 said:


> Great advise on choosing the surgeon Lavender, as much as I don't want surgery, that probably makes the most sense since I have nodules.
> 
> Andros- LOL, he called in Cipro for me- which caused the pharmacist to call me asking if I was sure, cause I had a reaction to Levaquin years ago. I took the chance though cause it was after 6 on a Friday and I was desperate. So far so good, 3 pills taken so far and no reaction. Fingers crossed. I am adding cranberry pills too though


Cipro is a Quinalone. Ciprofloxacin is in a class of antibiotics called fluoroquinolones. I almost kicked the bucket from it. I had anaphylaxis.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000878/

Be wary, my friend.

And by the way; my rheumatologist told me that most of her Lupus patients (I am one of them, PCP Rx'd the Cipro) have that sort of reaction to Quinalones.

So, do you have any reason other than that to suspect you might have Lupus and maybe you should be tested?


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## bosox10 (Jun 9, 2011)

Andros- I plan on asking the doctor when I go but I have to be honest, I can look up everything from MS to Lupus and the symptoms seem to overlap for everything out there  I hope I am able to get a definitive answer as to what the issue is.

I've noticed I've broken out on my neck/chest in this little pimples with little whiteheads. It's just on the front of my neck going down to the top of my breasts, and a couple right on my neck, I swear right over my thyroid. They aren't itchy though but the ones on my neck are uber sensitive when I scratch over them.

Are there diets that can reverse all this mess? Like organic, low carb, etc? At this point I'll eat twigs and berries if there's a chance of fixing things!

Thanks!


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## Andros (Aug 26, 2009)

bosox10 said:


> Andros- I plan on asking the doctor when I go but I have to be honest, I can look up everything from MS to Lupus and the symptoms seem to overlap for everything out there  I hope I am able to get a definitive answer as to what the issue is.
> 
> I've noticed I've broken out on my neck/chest in this little pimples with little whiteheads. It's just on the front of my neck going down to the top of my breasts, and a couple right on my neck, I swear right over my thyroid. They aren't itchy though but the ones on my neck are uber sensitive when I scratch over them.
> 
> ...


Well; if you decide to be tested for Lupus, the proper tests are Anti-DNA, C3, C4..

And yes; it is a conundrum. Many of the symptoms overlap and it is very hard to narrow the field. That is why the proper lab tests are essential.

Strange little dermatitis situation you have there. Any clues?


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## webster2 (May 19, 2011)

Hi, I am not losing any weight either! Graves diagnosis was confirmed yesterday. I am having surgery. I was not at all interested in the RAI. Just the thought of putting that in my body gives me the willies! The restrictions for 30 days after are pretty tough to take. I am a fairly new granny, and would miss seeing my little guy. I have had half of the thyroid out 20 years ago, and it was a breeze. I am going with that for this time too!

Like you, I was pretty scared with the rapid heart rate with doing even the smallest of chores. My heart rate was in the 150's. I've been on atenolol for a little while and can see a difference. Whew! I haven't gone back to exercising yet.

I am not sure whether the nodules I have are malignant or not. I have refused, twice, an ultrasound guided FNA. I figure they can examine the little devil once it is out.

I was very fortunate that the endo I saw was caring. I had heard that endos treat patients like lab tests not humans. This one was very good. She feels surgery is the way to go. She asked if I had a surgeon in mind. I have two and she made referrals to them. They are Otolaryngologists. Try searching in your area for doctors, and see if you find someone that will meet your needs that is experienced with thyroidectomies. I think it makes me feel better knowing I have some control in this. Plus, the librarian in me loves research!

You've come to a great place for support etc. I wish you the best, and hope you will feel much better very soon!


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## bosox10 (Jun 9, 2011)

Webster2- thanks so much! I am counting down till my appt on July 5th.

Question. I've been on the "meth" for about two weeks now and I initially felt better, and the lump in my throat that I felt when I swallowed is actually gone. But now I'm feeling overall icky again. And I still get a little rash on my chest which seems to get worse out in the sun. Is it possible to build up a tolerance to the meds so quick? I still can't walk around a lot without feeling exhausted but the fact that I can't feel that lump in my throat makes me think the pills are doing something. AND I CANNOT SLEEP!! I had to actually call the doctor for Ambien which takes forever to kick in. anyone else up all night? Is it the meds? Thanks!


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## webster2 (May 19, 2011)

I've been on the "meth" and a beta blocker for about 3 weeks. I felt some relief in the beginning too. I am exhausted most of the time, occasionally out of breath too. In fact, I was up most of last night. I didn't get up this morning until 9:30. TG it was not a work day. Tomorrow I see my GP. I am telling him to run some more tests. Lupus for sure and I want my lungs checked. This disease does have so many overlapping symptoms. It is hard to know what to think. I just know I do not feel well, and am going to be an advocate for myself to feel better. I know it is possible! Best wishes to you. Arm yourself with all the information you can find. This board is a tremendous resource. I wish you all the best, and to feel better soon.


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## bosox10 (Jun 9, 2011)

I forgot to add... I feel queezy ALL the time. And a bit lightheaded. I think I drank a bottle of Emetrol just to try and make that feeling go away this week


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## webster2 (May 19, 2011)

I mostly feel nauseous after I eat. Strange, all this weird stuff. I am sure there must be answers, somewhere. I just identified which lymph node is giving me troubles. It is the
retroauricular lymph node. I had mastoiditis with one recent bout of pneumonia. I had to look up the mastoid. I could only think of dinosaurs!

Did the emetrol help? I haven't taken any thing. I tired chewing mint gum. Didn't help...


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## AZgirl (Nov 11, 2010)

bosox10, 30 mgs a day seems pretty high. I was put on 40 a day, and after 3 weeks developed hives. so i switched docs and also took benedryl and lowered to 20 mgs. 2nd endo said that i will probably end up with hypo very soon, and she was sooo right. DEAD I SAY.. couldnt move, couldnt walk, talk eat... quickly reduced from 20 down to 15 mgs. She also said 1st endo did a bit of mismangament with overdosing me! currently i am on 2.5 and feel awesome, and all my labs come back at a normal range, for the last 3 months. Looking back, i probably would of been just fine on starting at 10 mgs. In my heart, i believe she wanted me to have that rash reaction because she insisted on me getting RAI!! This is when i went to endo #2. good luck finding an endo... i was just pushy, i called for a cancellation almost daily to see if i could get in earlier!! and to be honest, i make an appointment with a 2nd endo also, 3 months apart, so incase i didnt like endo 1 then i had 2 to fall back on. And in my case, i needed #2!!! Or else i could of just cancelled! or you could get 2nd opionion... but that is just my opinion!


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## bosox10 (Jun 9, 2011)

AZ Girl- what a great idea! Backup Endo appts!! You just reminded me to re-email Shands again as they are tough to get in but very well known around here for being great. Although I sometimes think they think they're too big for their britches. I wonder if the Endo will do anything other then bloodwork since I already had the ultrasound and the uptake test already. I'll be walking in with those results so maybe they'll see something diff that the ER docs didn't.

Can they know for sure just looking at the nodules that they aren't cancerous without dipping a biopsy ? I think someone said in passing it wasn't cancer but I was fuzzy. Ok my new friendly meds are kicking in. I hate not being able to yawn and actually sleep Good night!


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## bosox10 (Jun 9, 2011)

Webster2 how did your GP go? Hope you got the help you needed. The Emetrol helps to calm the queasy feeling but it comes back soon and then I have to take more so prob not the best thing to take.


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## AZgirl (Nov 11, 2010)

Bosox, i am not an expert at all, but when i looked up on the thyroid group message board, it says this.......
A biopsy is the only way to tell if a thyroid nodule is cancerous. But cancer may be more likely if you have:

A single, hard lump that feels very different from the rest of the thyroid tissue or other thyroid nodules.
A nodule that keeps growing for weeks or months. 
A nodule that does not move when you touch it.
Swollen lymph nodes in your neck.
A hoarse or scratchy voice that does not go away.


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