# Side Effects or Graves or Meds? Newbie!



## francescabarnes

Hi everyone I'm a newbie here. I'm thrilled I found this site - it was hard to find a place where people with this disease post their personal experiences. I was getting tired of the "WebMD" sites explaining in such broad, general terms what the medical society claims Graves Disease actually is. 

Backstory: I'm 27/F and my problem started w/a sudden kidney stone (my 1st and hopefully last). I spent over a week in the hospital with "complications" from their 2nd attempt to remove it.

Anyway, the following are my Graves disease symptoms, though I attibuted them to my hospital stay for the kidney stone:

Weight Loss (ended up losing over 30lbs)
Breathlessness - (I'd get out of breath when EATING or even TALKING)
Pounding Heart - (found out later my resting HR was over 120)
Tremors
General Weakness

Honestly my catch-phrase started to be "WOW that kidney stone really took a lot out of me!" 
I kept thinking I'd get over it.

Diagnosis randomly came 4 months after the stone by way of a military request for me to take a pregnancy test. I went to my OBGYN where the nurse practitioner suggested I get bloodwork for my thyroid since it looked enlarged. This wasn't the first time I'd heard it - 2 years prior I'd been told the same thing but tests were negative (so I was told...) Anyway, this bloodwork was positive for hyperthyroidism. Pregnancy test was negative 

Saw the Endo in Oct 09 says it's Graves. I did the betablockers and the Methimazole. Dropped the betablockers and take less Meth since it was "helping".

Wondering if these are symptoms of Graves, or side effects of the Methimazole:

- Loss of libido (Please tell me this is common!??! It's causing trouble in my marriage!)

- Muscle cramps (I can't do pushups without my arm muscles "charlie-horsing" on me, does that make sense?) It also affects other parts of my body

- Sensation of a loss of circulation - it feels like my legs or sometimes hands will not be getting good circulation then will start tingling. it's a terribly odd sensation.

- Mood Swings. I am a super Witch with a capital B. I dont know how people stand me. I'm also just very emotional.

- Depression (I think). I just dont feel like doing anything and I'm not interested in anything.

- Lightheadedness and nausea. it's random and comes and goes.

Ok, guess that's it (isn't that enough?!?!) I have an appt with my endo tomorrow. arty0006: YAY!!! Is it bad I get excited about my appointments??? I like to know where my levels are and TRY to get questions answered, LOL


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## Lovlkn

Hello and welcome,

Most of the symptoms you describe could be related to a thyroid issue. It sounds to me like you might be heading hypo or are already there.

Do you have any copies of your lab work?

It's very important that you get copies - many times doctors tell you your labs are "normal" but the ranges can confuse what is "normal" meaning you may be at the low end of range which puts you on the verge of being hypo due to mediation but the doc's will still say since you are in range your labs are normal. You should also be tested every 4 weeks while on anti thyroid medication until you stabilize then every -12 weeks at minimum.

Th entire time I was taking anti thyroid med's I barely had a TSH but because my doc tested the FT4 and FT3 we were able to keep me from becoming hypo.

I have since had surgery to remove my thyroid and 5 years later I still have the Graves antibodies thus little or no TSH so it's very important you do not dose on TSH alone.

You also need to be sure your doctor isn't just testing TSH which is not the proper test to dose a Graves patient off because antibodies can affect TSH. You need to request FT-4 and FT-3 tests for proper dosing.


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## Lovlkn

Long-term TSH suppression in Graves' hyperthyroidism
Topic: GRAVES' HYPERTHYROIDISM
title:Continued suppression of serum TSH level may be attributed to TSH receptor antibody activity as well as the severity of thyrotoxicosis and the time to recovery of thyroid hormone in treated euthyroid Graves' patients.
Authors: Chung YJ, Lee BW, Kim J-Y, Jung JH, Min Y-K, Lee M-S, Lee M-K, Kim K-W, Chung JH.

Reference: Thyroid 16: 1251-1257, 2006 
SUMMARY Background:
Serum TSH may remain suppressed for weeks or months despite normalization of serum T4 and T3 concentrations during antithyroid drug treatment in patients with Graves' hyperthyroidism.
Purpose: 
To evaluate the relationship between TSH receptor antibodies or other clinical parameters and the continued suppression of serum TSH during antithyroid drug therapy in Graves' disease.
Patients & Methods: 
One hundred and sixty seven patients with Graves' disease were studied. They had remained euthyroid for at least 12 months after normalization of serum T3 and T4 during treatment with antithyroid drugs. Initial therapy with 200-450 mg of propylthiouracil (n=137) or 15-45 mg of methimazole (n=30) resulted in normal serum T3 and T4 after 2.8 ± 1.6 months in all patients. Antithyroid drugs with dose adjustments were continued for up to 36 months. Recovery of serum TSH was defined as a return of serum TSH to levels >0.30 mU/L. TSH receptor antibodies were measured using a first generation TBII assay: values >15% were considered positive.

Conclusions:
Continued suppression of serum TSH in patients with Graves' disease during antithyroid drug treatment is related to TBII, pre-treatment severity of hyperthyroidism, and time to normalization of serum T3 and T4.

COMMENTARY 
Present study confirms and extends previous reports that TBII may be causally related to continuous TSH suppression in treated patients with Graves' hyperthyroidism, despite normal serum T3 and T4 concentrations. Evidence supporting a causal relationship is provided by the longer time interval between normalization of serum T3/ T4 and normalization of serum TSH in the TBII positive patients, as compared to the TBII-negative patients, and the inverse relation between TBII and TSH, independent of ambient serum T3 and T4 concentrations. The mechanism proposed to explain this observation is the binding of TBII to TSH receptors in the pituitary. TSH receptors have been demonstrated in folliculo-stellate cells of the human pituitary. Binding of TSH to these receptors might down-regulate TSH synthesis and release, thereby providing an ultra-short loop feedback in the regulation of TSH. How the folliculo-stellate cells signal to the thyrotroph cells remains to be elucidated. Binding of TBII to the folliculo-stellate TSH receptors might likewise inhibit pituitary TSH release.
The present study also showed that the time period required for normalization of TSH was determined - besides TBII - by pretreatment T3 levels as well as by the rapidity of normalization of serum T3 and T4. Because pretreatment T3 was higher in TBII-positive patients, it remains plausible that these two other determinants of TSH recovery time were not independent factors. Nevertheless, the clinical relevance of the present study is that as long as serum TSH is suppressed, dose-adjustments of antithyroid drugs should be guided by serum T4 and T3 results and not by serum TSH. Some patients maintain a suppressed TSH for years and, occasionally, one may see patients with clearly decreased FT4 levels because they receive a dose of antithyroid drugs that is too high in the presence of a TSH that is still suppressed.(Summary and commentary prepared by Wilmar Wiersinga)
Present summary and commentary are related to Chapter N° 11 (Section on Antithyroid Drug Therapy) of TDM
(You can find the article here at Thyroid Disease Manager (Endo Text)
http://www.thyroidmanager.org/thyroid_news.htm
about 2/3 down the page. Also note the typo in the second to last sentence on TDM, where it says "should be guided by serum T3 and T3 results". This should actually read 
"should be guided by serum T4 and T3 results" like I posted above)


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## khop

Hey! Welcome.

I can absolutely relate to your story. I am 28y Female who also has GD. I was a D1 college athletic coach before Grave's really took over my life.

I really related to you when you talked about lack of libido. I just got married 5 weeks ago and have little to NO sex drive. It is causing many problems in my marriage, making my new husband feel insecure. I feel like there is nothing I can do about it...i just have no energy!

As for weakness...I can't do anything I used to do. I don't have any muscle anymore. I have circulation issues all the time. My fingertips go numb all of a sudden and it is really painful!

I get nausea waves randomly and get physically sick most of the time they come....I am depressed and just want this to be OVER! I feel like I am way too young to feel this crappy every day!

As for mood swings....they are every day, most of the day. I feel sorry for my husband who feels the majority of my behavior change.

I am going to the dr. next week and I am going to ask for surgery. I am ready to be DONE!!!

Good luck!


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## Andros

francescabarnes said:


> Hi everyone I'm a newbie here. I'm thrilled I found this site - it was hard to find a place where people with this disease post their personal experiences. I was getting tired of the "WebMD" sites explaining in such broad, general terms what the medical society claims Graves Disease actually is.
> 
> Backstory: I'm 27/F and my problem started w/a sudden kidney stone (my 1st and hopefully last). I spent over a week in the hospital with "complications" from their 2nd attempt to remove it.
> 
> Anyway, the following are my Graves disease symptoms, though I attibuted them to my hospital stay for the kidney stone:
> 
> Weight Loss (ended up losing over 30lbs)
> Breathlessness - (I'd get out of breath when EATING or even TALKING)
> Pounding Heart - (found out later my resting HR was over 120)
> Tremors
> General Weakness
> 
> Honestly my catch-phrase started to be "WOW that kidney stone really took a lot out of me!"
> I kept thinking I'd get over it.
> 
> Diagnosis randomly came 4 months after the stone by way of a military request for me to take a pregnancy test. I went to my OBGYN where the nurse practitioner suggested I get bloodwork for my thyroid since it looked enlarged. This wasn't the first time I'd heard it - 2 years prior I'd been told the same thing but tests were negative (so I was told...) Anyway, this bloodwork was positive for hyperthyroidism. Pregnancy test was negative
> 
> Saw the Endo in Oct 09 says it's Graves. I did the betablockers and the Methimazole. Dropped the betablockers and take less Meth since it was "helping".
> 
> Wondering if these are symptoms of Graves, or side effects of the Methimazole:
> 
> - Loss of libido (Please tell me this is common!??! It's causing trouble in my marriage!)
> 
> - Muscle cramps (I can't do pushups without my arm muscles "charlie-horsing" on me, does that make sense?) It also affects other parts of my body
> 
> - Sensation of a loss of circulation - it feels like my legs or sometimes hands will not be getting good circulation then will start tingling. it's a terribly odd sensation.
> 
> - Mood Swings. I am a super Witch with a capital B. I dont know how people stand me. I'm also just very emotional.
> 
> - Depression (I think). I just dont feel like doing anything and I'm not interested in anything.
> 
> - Lightheadedness and nausea. it's random and comes and goes.
> 
> Ok, guess that's it (isn't that enough?!?!) I have an appt with my endo tomorrow. arty0006: YAY!!! Is it bad I get excited about my appointments??? I like to know where my levels are and TRY to get questions answered, LOL


Well; francescabarnes! Boy, you describe me in 1996 to a T! I had every single symptom you listed and more. Yes, to the muscles, the anger, you name it.

Actually, heavy exercise is contraindicated when you are on anti-thyroid meds and also if you are not if you are in hyper state. It is very dangerous.

For myself, I eventually opted to have that sucker out and I have absolutely no regrets. That is one bridge I did not mind burning.

Today, I am a gym rat to the max and loving it. Feel great all the time.

And by the way; kidney stones are a common co-occurring disease w/ Graves'! I had those too. Make sure you drink plenty of water.

Please let us hear from you about your apt. tomorrow. I am sure we all will be interested and I hope it goes well.


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## francescabarnes

Thanks everyone for your posts!!! As unfortunate as it is, it makes you feel better when other people have gone through, or are going through this too! Makes me feel a bit more normal - which means a lot right now!!!

Talk about heartbreak today - I was so discouraged after my appointment. Actually, that's an understatement. When the doctor walked out of the room I broke down in tears and needed a few minutes to compose myself. :sad0049:Ay-yi-yi this emotional rollercoaster has got to stop!!!

The first words out of his mouth were "your levels look great". I think mentally, as a doctor, he feels like because of this, his work here is done, and any symptoms I have now he either doesn't care about, or doesn't think could be due to the thyroid.

I started off by mentioning some throat pain I've been having for the past couple of years off and on that I never associated with thyroid issues until now, of course. It hurts when I swallow - only on the left side of my throat and it hurts up into my ear. Some days are worse than others.

His Answer: It must be a viral infection. See your Primary Care Dr. 
I told him I already had (I thought maybe it was strep) and they ruled it out
His Answer: See an ENT specialist.

Gee. Thanks. Cause I have time for MORE appointments. He did say my lymph nodes seem swollen but he didn't seem concerned about it.

Next off, I mentioned my muscle spasms and cramps. 
His response: (I wish this was a joke) Do you eat bananas before you work out?

Umm...Seriously??? I said No, then he (again, this is no joke) asked if I stretch before I work out.

Now, he knows I'm in the military, and that working out is normal for me - does he think that since my thyroid issues I've all of a sudden forgotten to stretch?? What an idiot.

Next was the mood swings. I told him how I get angry really easily and I just dont tolerate stress well. I'll cry over everything and feel overall pessimistic and down.

His answer: The "angry" part is a symptom of an overactive thryoid but since your levels are normal, it must be part of something else. Have you had depression before? I want you to see your Primary Care Dr about that.

 I was SO ANGRY. Another appointment?? And this ALL STARTED when my thryoid problems started but they're not connected???

Next I got into the loss of libido. I told him I just am not interested at all. I have NO desire whatsoever.

His answer: Yeah, I don't know what to tell you...

**awkward silence**

Me: Could it be due to the thryoid or the medicine

His answer: No.

And he left it at that. :confused0033:

I had paperwork I needed signed for the Army about limiting my physical fitness activities, he say he didn't think I needed any restrictions. I had to remind him that we'd JUST talked about my muscle spasms that interfere with at the very least, my pushups, and he said he'd include something about that when he got the paperwork.

The whole interaction was awkward and uncomfortable. He really didn't leave me with a good impression. I got a lot of "I dont know what to tell you" responses. He doesn't want to see me for 3 months even knowing all these issues are bothering me.

I started looking for a new endo today. I hate starting over.

Any feedback from those of you that have already been through crappy doctors and diagnosis? Suggestions? Thanks


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## khop

I had a dr for the first year that did nothing...kept me on meds that didn't work. Keep looking is all I can say! Ask around for dr. in your area...where do you live?

I am going to a new endo next week and I am excited about starting over and (hopefully) having someone who is proactive. That dr. is not the norm...and you will find someone who will help you answer all your questions!

My only advise is to find a new endo asap. Once you have one who will work with you, you will get things taken care of quickly :anim_07:!


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## chopper

MEDS DON'T WORK FOR GRAVES! That's my personal opinion. You're putting a band-aid on a bleeding artery is all with meds. Graves' is about a thyroid that is out of control. How do you possibly control something that is variable in nature with a single dose of medicine?

I hate when doctors give you that "Holier Than Thou" crap. Your questions and concerns were legitimate.

Sometimes you just have to move on. I've been through about 6 or 7 endos, fired by 1 (literally, he fired me...told me not to come back) and finally found an endo that listens to me and wants to help. You have to do what you have to do.

My thoughts about your situation after reading your post is like this - you are in the military, correct? As such, there is no way you are NOT in tune with your body. You KNOW what's going on. You know when a pain is just a workout pain or when a pain is something to get checked out. You've been going with your instincts for how many years now and now they are steering you wrong? I think not.

You'll need to find a doc that is going to fix you. If you feel unwell, you probably are. I don't care what your labs say. Someone is not catching the entire picture. Something, be it your thyroid (most likely) or something else is making you feel crummy. You need to find out what it is.


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## francescabarnes

khop said:


> I had a dr for the first year that did nothing...kept me on meds that didn't work. Keep looking is all I can say! Ask around for dr. in your area...where do you live?
> 
> I am going to a new endo next week and I am excited about starting over and (hopefully) having someone who is proactive. That dr. is not the norm...and you will find someone who will help you answer all your questions!
> 
> My only advise is to find a new endo asap. Once you have one who will work with you, you will get things taken care of quickly :anim_07:!


I'm in south east pennyslvania.

I found a doctor that accepts my insurance in wilmington, DE that I think I'm going to try calling next week. We'll see!


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## sidpb

Francescabarnes!

I have a story for you! And it all unfolds under the heading "Leg pains" right here in this room. I was dealing with what they all thought was a bacterial infection in my throat (very sore on the right side and just under my ear). After 2 rounds of Amoxicillin I could tell it was starting to come back. I also had what looked like measles all over my chest, neck and shoulders - it was starting to creep up to my face. Looked like tons of little white heads - sound like a skin infection to you? Well I had my thyroid removed this Wednesday and by today my throat looks clear and my measles like bumps that I've had for about a month have completely vanished. I knew it wasn't a coincidence all those thing were close by my thyroid. It will be interesting to see what pathology has to say about it. I was SO lucky to have the Endo I do, because he stayed very concerned about me and calls me at home regularly to see how I'm doing. He was not a fan of thyroid removal but I'm here to tell you it's the only way to go. I have not had to be on ANY pain pills of any kind since the day I had it removed.


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## francescabarnes

Thanks for the comments. The throat issue is pretty annoying. It hurts to swallow...it just can't be ignored. I dont have any measle-looking bumps, but I'm thinking I'll go see an ENT just to be able to cross it off the list. I haven't looked at the "leg pain" thread but I will after this post. 
The depression stuff I'm not buying into as a separate issue. It has to by related to my thyroid. I refuse to go on meds for that. Plus, with my being in the military, being on depression meds has the potential to hurt my career. I will wait until my new endo appointment to deal with that. Until then I'm warning those around me that I'm on a short fuse 

I'd like to read more about the drawbacks of having the thyroid surgically removed...I dont want to trade these side effects for others!


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## francescabarnes

Before switching to a new office, I decided to make a new appointment with another endocronologist in that same office. It's scheduled for Wednesday at 9:15 EST. My fingers are crossed!


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## khop

I will definitely pray for you...that things go well and you feel like the new endo really hears you! Keep us posted with how things go....


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## abbyes

I am on Methimazole and absolutely hate it. I am experiencing all of the same symptoms that you are. I think it's partly the Graves, and then partly the Methimazole. I am soooo tired by the time 7pm rolls around, that it takes everything i have to stay awake until 8:30 to put my kids to bed. And my poor husband...i wouldn't say i have no sex drive, just no energy at all. i am in bed (literally crawling there) by 8:30 every night. i talked to my Endo about this and they basically just told me that i will have good days and bad days and that i should get over the tiredness. so frustrating. i don't feel like myself at all. i love to work out, and am even too tired to do that. some days i go ahead and go thinking it will make me feel better, then when done, am even more tired. I go back to the endo in a few weeks to get my levels tested, and possibly have my meds reduced. hang in there, i hope things work out. maybe surgery is the only option for people like us? so does Graves go away once your thryoid is removed? are you basically cured other than taking meds everyday? Synthetic Hormones?


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## francescabarnes

Just got back from my follow-up with the second endo. She was much nicer, and took much more time with me. She discussed my levels with me:

TSH is .56
Free T3 is 230

That's all I got, so sorry for those that love reading and analyzing the results 

She thinks based on my new problems (muscles cramps, anxiety/depression, fatigue, loss of libido) I may possibly be going hypo. Soooo, she is cutting my 5mg per day Methimazole to 5mg one day, 2.5 the next and so on for the next 6 weeks at which point I'll have more bloodwork done.

She said the previous doc should have tested my all my T levels, plus my liver and white blood count since the meds can mess with that.

Also, she said she doens't feel any nodules, but said my thyroid is enlarged. She suggested an ultrasound on my thyroid to see if there is something there causing the pain in my "upper" throat area (hurts when i swallow but only on the left).

Abbyes - how much methimazole are you on? I was glad she lowered my dose, I was hoping she'd suggest it. She seemed very PRO-ROI so it will be something to consider down the road if I need to...I'd rather not. She told me that once you do ROI, you take synthroid and it replaces the hormones you no longer get from your thryoid. She said synthroid is easier to conrol/adjust compared to the anti-thyroid meds, she also said any side effects are easier on the body than hyper symptoms (I'm sure there are some taking synthroid that will probably disagree but this is what the doctor said). I'm just really scared about having to take meds for the rest of my life.


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## Lovlkn

abbyes said:


> I am on Methimazole and absolutely hate it. I am experiencing all of the same symptoms that you are. I think it's partly the Graves, and then partly the Methimazole. I am soooo tired by the time 7pm rolls around, that it takes everything i have to stay awake until 8:30 to put my kids to bed. And my poor husband...i wouldn't say i have no sex drive, just no energy at all. i am in bed (literally crawling there) by 8:30 every night. i talked to my Endo about this and they basically just told me that i will have good days and bad days and that i should get over the tiredness. so frustrating. i don't feel like myself at all. i love to work out, and am even too tired to do that. some days i go ahead and go thinking it will make me feel better, then when done, am even more tired. I go back to the endo in a few weeks to get my levels tested, and possibly have my meds reduced. hang in there, i hope things work out. maybe surgery is the only option for people like us? so does Graves go away once your thryoid is removed? are you basically cured other than taking meds everyday? Synthetic Hormones?


You sound hypo - how long have you been on the MMI and what dose?

When was the last time you had labs and do you have copies of them?

Anti thyroid medication is supposed to make you euthyroid aka normal thyroid levels which means you should feel normal, not fatigued. Your doctor needs to be dosing ou ased on [email protected] AND FT- not TSH as TSH can remain supressed in individuals with Graves due to antibodies.

Frances -

RAI is not a cure all and if it does not ablate the thyroid immediately or in one dose the slow die off of your thyroid can cause unstable labs as well, something you need to be aware of. What makes you think your endo will be able to properly treat you on replacement if they cannot level you out on anti thyroid meds? I have heard the old "it's easier to regulate on replacement" comment before from my own endo and in my case that has been true (because I have ha****oxicosis) but no doctor should be pushing any permanent treatment such as RAI or surgery without first giving ATD's at least 18 months to try and put you into a remission. Many people also can remain euthyroid on very small doses of anti thyroid meds.


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## francescabarnes

Lovlkn said:


> Frances -
> 
> RAI is not a cure all and if it does not ablate the thyroid immediately or in one dose the slow die off of your thyroid can cause unstable labs as well, something you need to be aware of. What makes you think your endo will be able to properly treat you on replacement if they cannot level you out on anti thyroid meds? I have heard the old "it's easier to regulate on replacement" comment before from my own endo and in my case that has been true (because I have ha****oxicosis) but no doctor should be pushing any permanent treatment such as RAI or surgery without first giving ATD's at least 18 months to try and put you into a remission. Many people also can remain euthyroid on very small doses of anti thyroid meds.


Yes, this new doc made it clear that with RAI it takes a while to before your hormones stable out so she definitely agrees that I should continue the Anti-Thyroid meds for quite a while yet. However, I was glad that she not only seemed open to the option, but that she took the time to explain everything to me  Thanks Lovlkn


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## Lovlkn

francescabarnes said:


> Yes, this new doc made it clear that with RAI it takes a while to before your hormones stable out so she definitely agrees that I should continue the Anti-Thyroid meds for quite a while yet. However, I was glad that she not only seemed open to the option, but that she took the time to explain everything to me  Thanks Lovlkn


Surgery is another option for you as well - I choose surgery and am very glad I did. I had 2 small children in the house as well as a pet and did not want to expose them or my husband to the radioactivity.

Just reading about RAI made me decide - you have to stay away from people for days but it should be more like weeks, not sleep in the same bed with your spouse as not to expose them, eat on paper plates and use plastic utensils that must be disposed of, flush the toilet several times after use. Plus think of all the people you encounter in public that you now expose to the radiation - it's criminal what doctors do when they administer RAI.

On top of all that you will remain radioactive for months after the RAI is taken, plus it can take several treatments, plus it takes sometimes years for the thyroid to quit producing excess hormone and you will of course need to be tested regularly during all of this and medications adjusted regularly as well. - for me personally it did not sound like a good thing to do. I had been taking and adjusting my anti thyroid meds for 4 years by the time I decided to have surgery and I was ready for all the excessive testing to come to a halt.

While some people have no issues and only need one treatment there are probably as many that have issues or increased TED issues.

I guess you could say I am anti RAI.

BTW- if you go to a surgeon for a consult to remove your thyroid and they agree it should come out due to your thyroid issues insurance companies always pay - without question. I asked my surgeon this question as I was curious and she said that none of her patients have ever been refused the option of surgery to remove their thyroid due to graves.

Read up on your options - it's your right to decide not the doctors.


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## khop

RAI for me was a nightmare. The radiologist told me I would only be contagious for a week to 10 days. That turned into 3.5 weeks. My fiance slept on the couch and I couldn't get near our dog. I ate off paper plates for a very long time and kept going back to get readings.
It was an extremely frustrating process which is why I go to see an endo on Tuesday to beg her to advise surgery!
Read as much as you can about both options, and most importantly read about other people's experiences. If I had, I would have had this taken care of over 6 months ago.


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## Lovlkn

khop said:


> RAI for me was a nightmare. The radiologist told me I would only be contagious for a week to 10 days. That turned into 3.5 weeks. My fiance slept on the couch and I couldn't get near our dog. I ate off paper plates for a very long time and kept going back to get readings.
> It was an extremely frustrating process which is why I go to see an endo on Tuesday to beg her to advise surgery!
> Read as much as you can about both options, and most importantly read about other people's experiences. If I had, I would have had this taken care of over 6 months ago.


Why would you want surgery if you had RAI?

Do they want to do another dose of RAI?

If you do not need a referral go directly to a surgeon that does thyroid removals - make sure they do 3-4 a week so they are experienced.


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## khop

I guess I didn't make that very clear. I had RAI twice and neither worked. I want surgery because I won't do another dose.

I need a referral (insurance requires) so that is why I am waiting to get into an endo. The previous endo refused surgery and wanted to do a 3rd RAI.


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## Lovlkn

khop said:


> I guess I didn't make that very clear. I had RAI twice and neither worked. I want surgery because I won't do another dose.
> 
> I need a referral (insurance requires) so that is why I am waiting to get into an endo. The previous endo refused surgery and wanted to do a 3rd RAI.


You poor thing - I hope you can find an endo who will refer you.

What state are you in? I know of a spectacular surgeon in NC who does minimally invasive - my scar is only 1".


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## francescabarnes

Well, I definitely think I was going hypo. I've been FREEZING all the time - plus the winter blizzards we keep getting aren't helping! Also, I have been constipated. Hopefully the reduced meds will help regulate that soon. I took a a dose of a mild laxative in the meantime and it's been helpful. However, I do not want to take any more doses. 
I also dislocated my shoulder last night. It happened once when i was 19 and it happens once or twice a year ever since. SCARY and reeeeeally PAINFUL. I think I may need surgery (i already did physical therapy) and I'm upset about it. I hate having all these medical issues - I just want to be normal!!!

That's all - just frustrated and wanted to whine about it :anim_03:


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## khop

Venting always helps! That is what this board is for. Hopefully it helps knowing that most everyone on this board has gone or is currently going through very similar experiences. Altough that doesn't always help. Keep us posted on how you are feeling!

Lovlkn - I am in CA and see a new endo Tues. will keep everyone posted.


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## francescabarnes

Wow what a day! I went for my ultrasound this morning and should have results early next week. I WISH i knew how to read the darn things * i was trying to make out the upsidedown images as I was lying there getting it done  LOL

I also went to an ENT specialist today to see about this pain i get on the left side of my throat when i talk or swallow. He stuck a scope up my nose and into my throat * quite unpleasant  To make matters worse, he didn't see anything, so now it's more tests and appointments.

It's crazy! You have to have a lot of free time to entertain a thyroid issue! It should be listed as a side effect * your thyroid will cause: changes in your metabolism, sudden increase/decrease in weight, tremors, mood swings, and lots of doctors appointments and different testing. :anim_63:

Anyway, the ENT said my thyroid is clearly enlarged (yes, i know) and that it's possible it's pushing on something in my throat that is causing the pain. So he ordered a CAT scan.

Does anyone have experience with the sore throat issue?


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## sidpb

I guess I was lucky that I found this board before I got too into the treatment of Hyperthyroidism and Graves. I read everything here (Andros and Lovlkn were a HUGE help) did some research on line. Talked to 2 personal friends who had it (one opted for RAI and later had it removed and the other was happy with the RAI even though she had to stay away from her 3 children two times because the first dosing didn't work). Three more acquaintances who had cancer and had a partial thyroidectomy (one is still going through a living hell trying to get her problems under control and has begged her doctor for years (10) to remove the rest. Another went back in 2 weeks later and had the rest removed. And the 3rd had to go back in 3 times and remove the rest, her parathyroids and part of her esophagus.). So when I went back to my GP (who also had his removed and was pro surgery) I told him we had opted for a complete thyroidectomy. He said 'Great!' and set me up with a surgeon who sent me to a Endo who was confused by my wanting to have surgery. He said only 15% of all patients opt for surgery. I said I have done my research (because when your sick, sitting in front of the computer is about all you can do) and I deduced surgery was the quickest way to get back on my feet. We removed it February 17th and I went on replacer a week later. I've felt WONDERFUL ever since. I have to say my Endo said he was quite sure I knew what was best for me and although at first he wasn't a fan, he decided I made the best decision. No my scar isn't pretty but I DONT CARE!!! I would have given anything to feel the way I'm feeling now and a slash across my throat is a small price to pay for the way I 'bounce" out of bed after a GOOD night's sleep. Good luck with your decisions and keep us up to date on your recovery!!!


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## sidpb

francescabarnes said:


> Wow what a day! I went for my ultrasound this morning and should have results early next week. I WISH i knew how to read the darn things * i was trying to make out the upsidedown images as I was lying there getting it done  LOL
> 
> I also went to an ENT specialist today to see about this pain i get on the left side of my throat when i talk or swallow. He stuck a scope up my nose and into my throat * quite unpleasant  To make matters worse, he didn't see anything, so now it's more tests and appointments.
> 
> It's crazy! You have to have a lot of free time to entertain a thyroid issue! It should be listed as a side effect * your thyroid will cause: changes in your metabolism, sudden increase/decrease in weight, tremors, mood swings, and lots of doctors appointments and different testing. :anim_63:
> 
> Anyway, the ENT said my thyroid is clearly enlarged (yes, i know) and that it's possible it's pushing on something in my throat that is causing the pain. So he ordered a CAT scan.
> 
> Does anyone have experience with the sore throat issue?


Look at my posts under "leg pain" and you'll see my comments about my sore throat. After my thyroid was removed all the issues were gone.


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## Andros

francescabarnes said:


> Well, I definitely think I was going hypo. I've been FREEZING all the time * plus the winter blizzards we keep getting aren't helping! Also, I have been constipated. Hopefully the reduced meds will help regulate that soon. I took a a dose of a mild laxative in the meantime and it's been helpful. However, I do not want to take any more doses.
> I also dislocated my shoulder last night. It happened once when i was 19 and it happens once or twice a year ever since. SCARY and reeeeeally PAINFUL. I think I may need surgery (i already did physical therapy) and I'm upset about it. I hate having all these medical issues * I just want to be normal!!!
> 
> That's all * just frustrated and wanted to whine about it :anim_03:


What do you mean by reduced meds? We will help you sort through this; try to not be upset. It actually makes the condition worse. Give yourself a hug.


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## francescabarnes

Sidbp * thanks for your insight and support!

Andros * i went from 5mg of methamazole per day to 5mg one day, 2.5 the next day.

I saw the posts on the sore throat but mine is ONLY on my left side and primarily when i swallow. it feels like its behind my tonsil.


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## Andros

francescabarnes said:


> Sidbp * thanks for your insight and support!
> 
> Andros * i went from 5mg of methamazole per day to 5mg one day, 2.5 the next day.
> 
> I saw the posts on the sore throat but mine is ONLY on my left side and primarily when i swallow. it feels like its behind my tonsil.


Okay; while on antithyroid med, your doctor should be alerted that you have a sore throat.

Warnings
Agranulocytosis is potentially a serious side effect. Patients should be instructed to report to their physicians any symptoms of agranulocytosis, such as fever or sore throat. Leukopenia, thrombocytopenia, and aplastic anemia (pancytopenia) may also occur. The drug should be discontinued in the presence of agranulocytosis, aplastic anemia (pancytopenia), hepatitis, or exfoliative dermatitis. The patient's bone marrow function should be monitored

Please read the rest of the information......
http://www.drugs.com/pro/methimazole.html


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## francescabarnes

Well the sore throat I've had off and on for 2 years * well before I started the methimazole so I dont think that's what is causing it. The ENT suggested my thyroid is pressing up on something causing the pain...I should be getting a CAT scan later this week to further investigate that one.

I got my ultrasound results today * "mildly enlarged thyroid gland with no evidence of nodules or masses". Sounds good to me!

My hands are feeling numb today * this i do contribute to the methimazole since this only started once i started the meds. Also the muscle cramps. My endo's office unbelieveable. I had to call 3 times to get the paperwork filled out that I needed for the Army. My appt was the 19th and I was just told today I could pick it up. The Army wanted to know how this "illness" hinders my ability to do physical training * the doctor seriously thought I should have no limitations!!! 
Hello!?!? I've been complaining about muscle weakness and tightening/cramps! Do you really think i'm in the best shape to do timed pushups, situps and run??? LOL it's frustrating but I guess you just have to laugh about it.


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## Andros

francescabarnes said:


> Well the sore throat I've had off and on for 2 years * well before I started the methimazole so I dont think that's what is causing it. The ENT suggested my thyroid is pressing up on something causing the pain...I should be getting a CAT scan later this week to further investigate that one.
> 
> I got my ultrasound results today * "mildly enlarged thyroid gland with no evidence of nodules or masses". Sounds good to me!
> 
> My hands are feeling numb today * this i do contribute to the methimazole since this only started once i started the meds. Also the muscle cramps. My endo's office unbelieveable. I had to call 3 times to get the paperwork filled out that I needed for the Army. My appt was the 19th and I was just told today I could pick it up. The Army wanted to know how this "illness" hinders my ability to do physical training * the doctor seriously thought I should have no limitations!!!
> Hello!?!? I've been complaining about muscle weakness and tightening/cramps! Do you really think i'm in the best shape to do timed pushups, situps and run??? LOL it's frustrating but I guess you just have to laugh about it.


That kind of exercise is definitely contraindicated at this time; I kid you not!

Yeah; wah!! Peripheral neuropathy. The antithyroid med has you in a place where you don't want to be. I hate that.

So very glad to hear the good news about the ultra*sound. Whooooooooooohoo!arty0006:

And.................it sound like the Methimazole can be ruled out as a cause of the sore throat as well which is more good news.

What day is the CAT scan scheduled for?


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## francescabarnes

The ENT office was supposed to contact me today about the date, but they didn't....i'm not surprised. I was too busy at work with it being a Monday. I will call them tomorrow to find out. More waiting


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## Andros

francescabarnes said:


> The ENT office was supposed to contact me today about the date, but they didn't....i'm not surprised. I was too busy at work with it being a Monday. I will call them tomorrow to find out. More waiting


Please keep us abreast. I am sure all of us will want to keep you in our thoughts on that day.


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## francescabarnes

Tomorrow morning I'm scheduled for my CT Scan -

Script says:
CT Neck/nasopharynx, skull base to clavicles, with contrast

I'm super excited to get this done so I can hopefully get an answer on what the pain is that I get on the left side of my throat when I swallow. While it hurts almost always, It was pretty bad for about a week, now I can barely feel it (isn't that how things always work out?). I'm actually hoping that tomorrow it's back to its painful self (never thought I'd wish that!) but I want it to be bad like it usually is so whatever is there will hopefully be more apparent on the CT scan.

My appt is in the morning, I hope to have an update later in the day tomorrow.
Im wondering how the scan works with the contrast...do i swallow something or will it be injected? i dont know....
i'm not scared of needles, i'm just curious 

Everything is OK right now. I really think the decrease of the methimazole has been helpful to my muscles. I did a more rigorous workout 2 days ago (barbell class) and I started getting the shaky legs so I stopped. Otherwise I'm a bit tired, but that could be because I'm so busy all the time. I have to check and see when my next appointment is, I'm curious to see what my labs say!


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## Andros

francescabarnes said:


> Tomorrow morning I'm scheduled for my CT Scan -
> 
> Script says:
> CT Neck/nasopharynx, skull base to clavicles, with contrast
> 
> I'm super excited to get this done so I can hopefully get an answer on what the pain is that I get on the left side of my throat when I swallow. While it hurts almost always, It was pretty bad for about a week, now I can barely feel it (isn't that how things always work out?). I'm actually hoping that tomorrow it's back to its painful self (never thought I'd wish that!) but I want it to be bad like it usually is so whatever is there will hopefully be more apparent on the CT scan.
> 
> My appt is in the morning, I hope to have an update later in the day tomorrow.
> Im wondering how the scan works with the contrast...do i swallow something or will it be injected? i dont know....
> i'm not scared of needles, i'm just curious
> 
> Everything is OK right now. I really think the decrease of the methimazole has been helpful to my muscles. I did a more rigorous workout 2 days ago (barbell class) and I started getting the shaky legs so I stopped. Otherwise I'm a bit tired, but that could be because I'm so busy all the time. I have to check and see when my next appointment is, I'm curious to see what my labs say!


You will definitely be in my thoughts tomorrow and I will be very anxious to hear about the CT scan. You must tell us all about your experience and I do wonder when you will know anything which I am sure you will let us know as well.

Glad you feel some better and dang that throat. But don't worry; it does not have to hurt to show up if something is there and while I don't want there to be anything, I am a believer in "cause and effect" so I know something is afoot.

You will be in my thoughts tomorrow, for sure!


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## francescabarnes

for my own record, thought i'd include my results from my last visit 2/24/10
Thyroid enlarged, 1 1/4 x normal, 0 mass/nodule
TSH 0.59 normal
FT3 254 low normal


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## Andros

francescabarnes said:


> for my own record, thought i'd include my results from my last visit 2/24/10
> Thyroid enlarged, 1 1/4 x normal, 0 mass/nodule
> TSH 0.59 normal
> FT3 254 low normal


Thanx! Looks like the antithyoid med is kicking in!


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## francescabarnes

CT scan went well! They gave me a disk - Now if I only knew what these images mean! I need radiologly tech friends LOL


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## Andros

francescabarnes said:


> CT scan went well! They gave me a disk - Now if I only knew what these images mean! I need radiologly tech friends LOL


Well; I am dying to know. So when you can, please let us know.


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## francescabarnes

I was hoping the ENT would call me with my CT results from Friday, but no. I called today to find out my results, which the receptionist said they dont discuss over the phone. Sooo...I have an appt scheduled for Friday. I'm glad the appt is only 2 days away but frustrated that they had no intention of calling me. Friday was not a good day for me, but I had to take it since she told me that my doctor is out the following 2 weeks. Good thing I didn't wait any longer to call!

I'll be sure to update once I see the doc Friday.

So I've been going to the gym working out some more now that I've been staying well hydrated and on the lowered dose of methimazole. I was struggling with constant muscle cramps but they got better. 
Last night, however, I was working on a Push-Up regimen with my hubby to help increase my push-ups and I started getting the stupid bicep cramps again keeping me from doing many pushups. 
Seems silly, but I completely lost it and burst into tears. 
I'm OK with not being able to do something because I've been lazy or not focused or something like that. I'm NOT OK with not being able to do something because of things out of my control (stupid Graves).

My husband thinks I'm looney-tunes and shouldn't get so upset about it since I can't help it, but it's so frustrating!

Always feels good to vent on here...ahhhh.....much better :ashamed0002:


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## Andros

francescabarnes said:


> I was hoping the ENT would call me with my CT results from Friday, but no. I called today to find out my results, which the receptionist said they dont discuss over the phone. Sooo...I have an appt scheduled for Friday. I'm glad the appt is only 2 days away but frustrated that they had no intention of calling me. Friday was not a good day for me, but I had to take it since she told me that my doctor is out the following 2 weeks. Good thing I didn't wait any longer to call!
> 
> I'll be sure to update once I see the doc Friday.
> 
> So I've been going to the gym working out some more now that I've been staying well hydrated and on the lowered dose of methimazole. I was struggling with constant muscle cramps but they got better.
> Last night, however, I was working on a Push-Up regimen with my hubby to help increase my push-ups and I started getting the stupid bicep cramps again keeping me from doing many pushups.
> Seems silly, but I completely lost it and burst into tears.
> I'm OK with not being able to do something because I've been lazy or not focused or something like that. I'm NOT OK with not being able to do something because of things out of my control (stupid Graves).
> 
> My husband thinks I'm looney-tunes and shouldn't get so upset about it since I can't help it, but it's so frustrating!
> 
> Always feels good to vent on here...ahhhh.....much better :ashamed0002:


I understand. Your mind knows you can do it but your body won't co-operate.

Geez; it is a good thing you called otherwise you may have been left waiting another whole 2 weeks.

Will be waiting to hear from you and I hope it is all good news.


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## francescabarnes

CT scan review appt was today.....results: more testing! Arg! 
(remember this is for my sore thoat on the left side)

The scan showed that my lymph nodes in my neck are enlarged - the "limit", says the doc, is 1.5cm or below, my left node is at 2.3. :a1Thyroid:

He said it could be a viral infection, but doesn't think it is since I have been having the throat issues off and on for a couple of years. He mentioned Lymphoma, and sent me for a CBC to count lymph-a-somthings to rule it out. :scared0015:

He told me not to worry, it's probably just a side effect of the enlarged thyroid (that is 1cm off from touching the node itself) thats causing it to get inflamed, but we're doing the testing as a precaution. He said (and this makes sense) that with cancer, it grows and gets worse, it doesn't come and go away like my pain has. So that's set me at ease for now. 
He also said as long as those results are normal, then we'll wait for the pain to come back (which it will, I know), and see if taking antibiotics helps. But doesn't make sense to take anything right now when it's not bothering me.

Some of the symptoms of lymphoma overlap with symptoms of graves disease. He started asking me if I've lost a lot of weight recently, felt easily fatigued, sweat a lot....ummm YES but that's from my thyroid...RIGHT??? LOL

Guess it's just another waiting game until I can get my blood drawn again next week. I'll update again then.

Oh speaking of blood, does anybody know if I can still donate blood to the Red Cross? I've done it consistently for years, and feel bad I haven't donated in a year now.


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## Andros

francescabarnes said:


> CT scan review appt was today.....results: more testing! Arg!
> (remember this is for my sore thoat on the left side)
> 
> The scan showed that my lymph nodes in my neck are enlarged - the "limit", says the doc, is 1.5cm or below, my left node is at 2.3. :a1Thyroid:
> 
> He said it could be a viral infection, but doesn't think it is since I have been having the throat issues off and on for a couple of years. He mentioned Lymphoma, and sent me for a CBC to count lymph-a-somthings to rule it out. :scared0015:
> 
> He told me not to worry, it's probably just a side effect of the enlarged thyroid (that is 1cm off from touching the node itself) thats causing it to get inflamed, but we're doing the testing as a precaution. He said (and this makes sense) that with cancer, it grows and gets worse, it doesn't come and go away like my pain has. So that's set me at ease for now.
> He also said as long as those results are normal, then we'll wait for the pain to come back (which it will, I know), and see if taking antibiotics helps. But doesn't make sense to take anything right now when it's not bothering me.
> 
> Some of the symptoms of lymphoma overlap with symptoms of graves disease. He started asking me if I've lost a lot of weight recently, felt easily fatigued, sweat a lot....ummm YES but that's from my thyroid...RIGHT??? LOL
> 
> Guess it's just another waiting game until I can get my blood drawn again next week. I'll update again then.
> 
> Oh speaking of blood, does anybody know if I can still donate blood to the Red Cross? I've done it consistently for years, and feel bad I haven't donated in a year now.


I guess he ordered a lymphocyte count. It does not necessarily have to be lymphoma. The lymphs swell for lots of reasons such as Sjogren's, Lupus, infection. In the neck,could be teeth, sinus etc.. Cat scratch fever.

Here is a really good link and your doc is right. Some of the symptoms could be Graves' or they could be Lymphoma and a myriad of other things.

http://www.surgjournal.com/article/PIIS0039606010000425/abstract?rss=yes

Here is hoping for the best of all possible outcomes here and we all will be anxious to hear the results which I hope are good, of course.

Re donating blood. The best thing to do is ask the Red Cross. But................if you are tired, exhausted................I don't think that would help your situation right now.


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## francescabarnes

So I had my follow up appt with the endo today after she lowered my dose from 1, 5mg pill of methimazole a day to 1 pill one day, and half a pill the next.

Today she said I could be lowered again to half a pill each day.

I was really happy about my appointment. I'm feeling so much better that I didn't even care what my levels were because I feel great! I have a little bit of muscle cramping still when I'm working out, and I think lowering my dosage that much more will help with this.

I actually left the endo's office smiling!!! Amazing!!

I did not get results back from the ENT for my bloodwork. They are TERRIBLE about calling back with results. I've already called twice and was told both time to expect a call. Uh-huh. I'm not too worried about, I just want to hear the "all clear" from them before I can really take a sigh of relief.

Hope everyone is enjoying the Spring!


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## Andros

francescabarnes said:


> So I had my follow up appt with the endo today after she lowered my dose from 1, 5mg pill of methimazole a day to 1 pill one day, and half a pill the next.
> 
> Today she said I could be lowered again to half a pill each day.
> 
> I was really happy about my appointment. I'm feeling so much better that I didn't even care what my levels were because I feel great! I have a little bit of muscle cramping still when I'm working out, and I think lowering my dosage that much more will help with this.
> 
> I actually left the endo's office smiling!!! Amazing!!
> 
> I did not get results back from the ENT for my bloodwork. They are TERRIBLE about calling back with results. I've already called twice and was told both time to expect a call. Uh-huh. I'm not too worried about, I just want to hear the "all clear" from them before I can really take a sigh of relief.
> 
> Hope everyone is enjoying the Spring!


I have been "wondering" about the ENT labs??? Geez!!!

So,so glad you are feeling better.

Our pollen count here today is 5733. LHM!! We have not seen it this bad for over 6 or 7 years!

Otherwise, I am enjoying spring and planning the garden right now. Getting ready to plant those tomatoes, st. beans and a whole bunch of other stuff.

How about you? Are you an outdoors person?


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## francescabarnes

I'm definitely an outdoors person but have pretty bad allergies, so have to limit my time outside. I dont have much of a green thumb, It's hit or miss, but I DO try! LOL

I'm just glad it's warming up outside. This winter in PA was rough! I'm originally from California and Texas so I'm not big on the whole "snow" thing


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## Andros

francescabarnes said:


> I'm definitely an outdoors person but have pretty bad allergies, so have to limit my time outside. I dont have much of a green thumb, It's hit or miss, but I DO try! LOL
> 
> I'm just glad it's warming up outside. This winter in PA was rough! I'm originally from California and Texas so I'm not big on the whole "snow" thing


Oh, you get the snow in Pa. all right! Lived in Philly for quite a number of years.

Don't ever give up on the gardening and by the way; we say,"A good gardener has a brown thumb!"

I love the outdoors and often wonder why I have a house. Pollen count here today is 5400 and "something!" Better than yesterday which was 5733. Aaaaaaaaaaaaaaargh!


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## francescabarnes

Though I've been feeling *GREAT*, I was just thinking this weekend about how I never got the "all clear" from the ENT on my bloodwork for the swollen lymph node. (I've been waiting for a callback) I wasn't really concerned because I'd seen my Endo in the meantime and she said I looked fine . However, the ENT office called me yesterday and said my doctor wants me to come in to discuss the bloodwork results 

Now I'm worried. Of course I asked the nurse if there was something wrong and she said she didn't know she was just making the call (gee, thanks!). I don't know why they would call me in just to say everything is good...? And if that is the case (while I'll be glad things are OK), I'm going to be upset that I worried over it and, petty as it may seem, had to pay a $20 copay!

My appt is Thursday afternoon....I'll keep everyone posted! Wish me luck!


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## Andros

francescabarnes said:


> Though I've been feeling *GREAT*, I was just thinking this weekend about how I never got the "all clear" from the ENT on my bloodwork for the swollen lymph node. (I've been waiting for a callback) I wasn't really concerned because I'd seen my Endo in the meantime and she said I looked fine . However, the ENT office called me yesterday and said my doctor wants me to come in to discuss the bloodwork results
> 
> Now I'm worried. Of course I asked the nurse if there was something wrong and she said she didn't know she was just making the call (gee, thanks!). I don't know why they would call me in just to say everything is good...? And if that is the case (while I'll be glad things are OK), I'm going to be upset that I worried over it and, petty as it may seem, had to pay a $20 copay!
> 
> My appt is Thursday afternoon....I'll keep everyone posted! Wish me luck!


Oh, my gosh!! My thoughts and prayers will be with you on Thurs.. Sure sounds like something is showing up but look at it this way; if there is, better to know than not. Then something can be done. My thoughts and prayers are definitely with you.

Let us know when you can.

Twenty dollar bills don't grow on trees; that does not seem petty to me.


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## francescabarnes

Andros said:


> Twenty dollar bills don't grow on trees; that does not seem petty to me.


But that WOULD be awesome!!!

Thanks for the well-wishes, we'll see what happens!


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## Andros

francescabarnes said:


> But that WOULD be awesome!!!
> 
> Thanks for the well-wishes, we'll see what happens!


Whatever happens, we are here to get you through it. It is going to be okay ultimately.

Take one day at a time and do know that many of us here really care about what you are going through.

{{{{francesca}}}}


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## francescabarnes

I'm keeping radiologists in business!

Result of my appt was that my bloodwork for my white blood cells is "normal". However, due to the size of 2 (jugular-something) lymph nodes on the left side of my throat, he suggested doing an FNA to rule out lymphoma since he said there is a rare correlation between Graves and Lymphoma. (I have no idea how accurate that is and sadly, i dont have much trust in doctors anymore)

I was pretty confused by the time I left the office, even though he answered all my questions. He said that the FNA will not always show the lymphoma and the only way to *really* tell was to do a biopsy which he suggested as a last resort. So I guess i didnt know why i'd have an FNA and have it be negative, and then do a biopsy anyway?? He did say after the FNA if it's negative, then we can leave it alone for a bit and see if it goes down but that doesn't exactly seem like the right answer either.

Anyway, due to the location, I have to have it done with the ultrasound which (around here) means I have to go to the hospital who can't get me in until May 11th. Booooo!

I also dont understand why he didn't suggest the FNA in the first place and why "normal" labs would cause him to bring me back in to suggest it. I still think he just wanted my $20 copay  
Oh and he prescribed antibiotics "just in case" it may help the nodes go down.

Now it's time for me to research my butt off! I'm a control freak and will want to know EVERYTHING there is to know about FNA's and Lymph nodes, and all that jazz. Anything anyone has to add is appreciated!!


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## Crockie

francescabarnes said:


> I'm keeping radiologists in business!
> 
> Result of my appt was that my bloodwork for my white blood cells is "normal". However, due to the size of 2 (jugular-something) lymph nodes on the left side of my throat, he suggested doing an FNA to rule out lymphoma since he said there is a rare correlation between Graves and Lymphoma. (I have no idea how accurate that is and sadly, i dont have much trust in doctors anymore)
> 
> I was pretty confused by the time I left the office, even though he answered all my questions. He said that the FNA will not always show the lymphoma and the only way to *really* tell was to do a biopsy which he suggested as a last resort. So I guess i didnt know why i'd have an FNA and have it be negative, and then do a biopsy anyway?? He did say after the FNA if it's negative, then we can leave it alone for a bit and see if it goes down but that doesn't exactly seem like the right answer either.
> 
> Anyway, due to the location, I have to have it done with the ultrasound which (around here) means I have to go to the hospital who can't get me in until May 11th. Booooo!
> 
> I also dont understand why he didn't suggest the FNA in the first place and why "normal" labs would cause him to bring me back in to suggest it. I still think he just wanted my $20 copay
> Oh and he prescribed antibiotics "just in case" it may help the nodes go down.
> 
> Now it's time for me to research my butt off! I'm a control freak and will want to know EVERYTHING there is to know about FNA's and Lymph nodes, and all that jazz. Anything anyone has to add is appreciated!!


francescabarnes,

I followed you to this thread from your post to me regarding Methimazole. I can't believe the startling similarities between you and I.

I was sent to an Oncologist because of enlarged lymph nodes in my neck and a high white blood cell count. I had four PET scans, a couple of CAT scans and finally got the all clear a year later - no lymphoma. Now a year later I am diagnosed with Graves. Interesting.

Anyway, I know what you are going through and I don't know about you, but waiting was the hardest part for me.

Thoughts and prayers coming your way.

Hugs to you.

Crockie


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