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Can a thyroidectomy get rid of graves disease?
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Can a thyroidectomy get rid of graves disease?

Once you have a total thyroidectomy, do you still have graves disease?
I was diagnosed in June 2007 with hyperthyroidism and graves disease.  I was on Toporol and Tapazole for 6 months prior to having surgery.  I had a total thyroidectomy in November 2007 and my recovery was great. I'm on Levoxyl now and still trying to find the right dose but so far so good.... it just needs a little tweaking here and there. I don't miss the graves symptoms at all. I've researched everything I can get my hands on and I still haven't found a clear-cut answer.... a client of mine also has graves and he said he's seeing one of the top endocrinologists in the country who told him that even with the surgery, you still have graves disease.   Someone else told me this: Graves' is the autoimmune disease that can cause hyperthyroidism. so if it makes any sense then think of it as having 2 diseases, one which is caused by the other.  So when you have your thyroid removed then you don't have the hyperthyroid disease anymore but you still have the autoimmune disease (there is no cure, so unless someone comes up with one you'll always have it)



What confuses me is that graves is the most common FORM of hyperthyroidism. I had a total thyroidectomy, therefore, I have no thyroid and am now technically hypothyroid so how could I still have graves disease?



Can you please help me on this one?  

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60 Comments Post a Comment
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213044_tn?1236531060
If you have the antibodies that led to a diagnosis of Grave's, you have Grave's.

You always will. Be thankful you do not suffer from the symptoms of a thyroid under the influence of the antibodies any longer.

You have Grave's disease regardless of the hormone levels in your body. The distinction between Grave's disease and Hyperthyroidism is very simple, and very important.

Hyperthroidism is a condition involving thyroid hormone levels.

Grave's disease is an auto-immune disorder that is not curable, and can lead to other auto-immune disorders.

That last sentence is very important, and is something to keep in mind the rest of your life.
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Avatar_n_tn
I don't know the answer to your question, but I have Hyperthyroidism from Graves Diease as well & I just made the decision to have surgery instead of RAI. I am meeting with my surgeon in 2 weeks. Is your scar still visible? Do you have any tips for me about the process of getting surgery? I am confident about my decision to have the surgery, but I am still very nervous about it.
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Avatar_m_tn
Can I just say that I sometimes find the level of pessimism on this board to be irritating.  
Should we really need to keep in mind that it can lead to other autoimmune disorders.  I am told by my endo that there is a very, very small percentage that might apply to.  Sorry, but I have avoided this board for awhile for this very reason.  Look at Faith Ford, Barbara Bush, George Bush Senior.... All Graves' patients doing very well.  
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Avatar_m_tn
Sorry again if my aggravation offends.  It is just that truly this board can put me in a bad mood.  
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Avatar_m_tn
Oh and to answer your question... yes, you may always have the antibodies although they can lessen and even go away, at least according to my Endocrinologist.  Regardless, it sounds like you are doing excellent!  How wonderful that your hormone replacement tweaking is going so well.   All the best, and remember your success.
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377600_tn?1225167036
I had one autoimmune conditions--ten years later--I had another.
But I have a strong family history of autoimmune diseases--that might be the difference.

Antibody counts can go down to very low or even normal levels. It might take a while after thyroid removal though.

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377600_tn?1225167036
I'm deep south southern too:)

It is unfortunate that I have been displaced to the midwest:((

Roll Tide

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277535_tn?1218139798
War Eagle!!

Had to do that since I don't see too much of that on the forum!  

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377600_tn?1225167036
Hey!!  Oh my goodness, now I feel at home.

My family is War Eagle...I'm a convert to Roll Tide..by way of--well--I liked the colors better.

Just kidding.
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435814_tn?1234452591
Hey all!  Thanks for all of the feedback!  It is so helpful!  I haven't checked this page in a while so a belated thank you to all who responded.  I am now 15 months post complete thyroidectomy and my biggest complaint/concern is my weight.  All of the other symptoms from graves/hyperthyroidism are really minimal.  My eyes are FINALLY back to normal but it took quite a while .... I was accutely aware of the changes in my vision and the appearance of my eyes.  My scar is practically invisible.  Friends and family frequently tell me that they cannot believe how good it looks.  So, I guess we've come to the conclusion that once you have graves, you still have the antibodies even if you have your thyroid/hormone issue worked out.  It is SO great to have a forum where we can ask questions, discuss and encourage each other through this disease.  THANK YOU for your input!  
In It With You,
Elise
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435814_tn?1234452591
P.S.  I would just like to add that I am 100% convinced that I do still have Graves disease ... for a while, I was convinced that my graves disease would be a thing of the past once I had my total thyroidectomy.  For me, this whole experience has been a wake up call.  When I am under a lot of stress, my graves symptoms come back with a vengeance.  I am STILL learning how to take care of myself and lifestyle changes certainly do help a lot.  However, I am reminded that stress really does affect me and it is very serious.  So, because of this disease, I am learning more about my body and how it is affected when I am not taking care of it as I should.  It is hard to avoid stress but I am constantly trying to learn how to deal with it so that my graves symptoms will (hopefully) be controlled.  If anyone has any good tips or suggestions on this, please share!
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Avatar_n_tn
I was just diagnosed with Graves diease... I am so glad to hear of the successes on here!  I was devastated to hear of his disorder.   My doc put me on PTU and I was feeling alot better but, I quickly had an allergic reaction to it.  VERY itchy and swollen palms and ankles.   I am now on target for a total thyroidectomy in 10 days.  I am just curious is some of my symptoms will go away once the thyroid is out?   I am having really bad muscle pains in my back and shoulder.  I looked on line and Graves can cause muscle wasting.  Did any of you experience this and/or did it get better?  Good luck everyone!!!!!
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Avatar_f_tn
After your TT, you will go through the phase of finding the correct dosage of medication you will need to be on. ** you will need patience** ; it took me a yr. to finally get right where i needed it to be, but everyone is different.

It has been 15yrs since my TT (I was 23); I did the RAI,it did not work for me, so ended up doing the TT. I am doing well as far as the thyroid levels go. So can't complain.

Good luck, and remember patience....
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Avatar_f_tn
After being diagnosed with Graves disease at age 16 years (1972), all except 5% of my gland was removed shortly thereafter.

I've never had a doctor that knew how to treat me, and being actively moving about the country, I sought several super primary physicians.  But the story was the same: my TSH was consistently too low, despite a common maintenance dose of .125mg synthroid  per day.  Yet, I always felt hypothyroid after surgery.  The Synthroid remains the best "source" I've taken. Armour brand  the WORST source of T4/T3.  Source matters to most folks, with some working better than others. We vary.

In the mid 1980s, doctors became concerned about too much T4, because of the  lack of deposit of bone calcium with too much,  and if too high, and of course one can have heart issues.  So beginning in the mid 80s, most doctors kept dropping my dose of T4 because my TSH  levels came back too low in clinical blood work. They dropped my dose... until I lived half my day sleeping! For a while, I was given only 0.05 mg of T4 per day, and that didn't get me through a morning of normal activity. But, by golly, I finally had a normal TSH.   Unfortunately,  I did not have a normal life!

What was Graves disease doing to me post surgery? It was a mystery and frankly, I began to take my life BACK from doctors as soon as I found ways to find Synthroid from overseas markets. I put myself back on a realistic dose I was given post surgery.  After all, I knew I didn’t want to sleep all day, grow fat, and remain hypothyroid just so the doctors could feel good that I had a normal TSH! At the same time, I began a campaign of scientific research on Graves disease and on what the thyroid does for me on the normal course of a day.
The last 10 years has been a dream, because I finally found the recipe.
My Findings:
Graves, the autoimmune part,  means that a thyroid stimulating immunoglobulin (TSI) gets overproduced,  mimicking TSH in the pituitary release and converts T4 into usable thyroxine, trigger more production. In the pre-surgery Graves patient, TSH is often low (because the T4 and T3 are cranking out full kilt).  In post surgery, it is argued that a normal TSH will occur when a normal amount of T4 is given back in the form of Synthroid. And the body will convert what T3 it needs, when it needs it throughout the day, via the beautiful Hypothalmus,-Pituitary-Thyroid Axis system   HA!.
Good plan, but some of us don’t follow the plan.  My type of autoimmune disease didn’t go away after the thyroid was removed.  Instead, I continued to overproduced TSI and somehow that affected the TSH feedback loop, even after thyroidectomy.

Problem in me:  Normally doctors look for a  low TSH to tell them that the T4 is too high of a dose, and a high TSH if too low of a dose, etc. My TSH was always low (as indicated above).

After reading  a set of articles by Prummel and Brokken (2003 (on web), 2010, a book now on pituitary function) it became apparent that   the immunoglobulin TSI is still influencing my TSH output via my pituitary, directly, by acting on the receptors in the pituitary organ which has some fraction of cells that normally bind  to TSH. It is believed the receptors tell the Pituitary how much TSH is too much or too little based on how much T4 or T3 I have in circulation.  But the Graves somehow causes me to show an abnormally low TSH because the TSI was occupying receptor places in the pituitary where TSH normally does.  What a monkey wrench this causes!  TWO problems arise in me.


Problem 1 (I've already telegraphed).   In the real world of  complex doctoring, the  low  TSH reports lead doctors to reduce my T4 because why else would I have a low TSH if I didn’t have excess T4/T3 ?  High T4/T3 reduces the  TSH by negative feedback.  Wrong.  My autoimmune problem caused the THS to lower, NOT the amount of T4 or T3!    Something about the TSI binding to the pituitary receptors feeds back on the TSH levels fooling the doctors to thinking I have excess T4 or T3.  Not true, I have too much TSI.

Problem 2.  I discovered yet another curious factoid perhaps a greater subset of us Graves suffers have (and which I've not yet found data for but I know my body, so I listen)

Doctors like to say take your T4 pill once a day.   In a perfect system, the T4 converts to active T3 in the functioning of a normal H-P-T axis, throughout a normal day.  But Not Me.    I just  take  the dose, I think the T4 just converts to T3 way too rapidly.  I don’t know how, but I am pretty certain that the TSI somehow leads to the HPT signal to make a quick conversion to T3.  I feel  reved up  in the morning after taking a full dose (0.125mg, after approx.  1 hour of taking it), but I feel flat by lunch, lethargia kicking in.  ALL GONE.  No reserve to draw from. Kaput.  I am actually HYPERTHYROID if I take the dose of .125 mg  all at once!  For about 4 to 5 hours, I’m great, then I sleep the rest of the day. Hypothyroid by noon.

What did I do in compensation and why:  I take .05 mg T4  with a smidge of T3  (10 mcg, Cytomel  --never Armour brand, it is terribnle in the effects) (T3, ie, Cytomel works as a kickstarter in  5 to 10 min whereas T4 alone is 40 minutes, at best).  I take this dose about 30min before breakfast and I repeat the dose at lunch (total of .1 mg T4 and 20 mcg cytomel), and another 0.02 T4 at dinner  (a total of .12mcg T4 for each day, and no more than 20 mcg cytomel).  I finally feel productive, and I know when I miss  a dose, especially at the functionally important time such as a meal or a  lecture --I feel sleepy and foggy soon thereafter.  So for me to "feel" normal, I had to parcel my doses to prevent the too rapid of a conversion of T4 to T3.  

SO, Graves is still affecting me after 35 years,  and it affects me by fooling my TSH  feedback system, and by too quickly converting any one dose of T4. I MUST parcel, and I MUST have a reasonable dose.  I feel I am careful NOT to overdose.  I don't want heart disease or bone disease.  I just want to function on an even keel!

Doctors, most of them, are not aware that Graves can still affect patients, and because the autoimmune genes that   trigger Graves can be different across the globe, I’ve no  doubt that all of us are  a bit different in how we express Graves post surgery.  This variation is VERY VERY important for doctors to understand.  We can’t just be regulated by blood readouts of TSH, T4 and T3.  


A final Note.  I take Isol Iodine.  4-6 drops daily.  I don't store iodine anymore and Iodine is critically important to both men and women.  Afterall, it is an antioxidant and keep for proper cell division (especially in breast).


I’m English-European, with some German and a little bit of French (I am certain of my gene background).

If anyone wants the website or a copy of article by Prummel and Brokken 2003, I am happy to supply.
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Avatar_m_tn
Welcome to the forum.  Thanks for the information in your post.  There is some very interesting info that I want to delve into more deeply.  

I don't know all the possible contributors to TSH being suppressed when taking thyroid meds. I do know that even for patients that are not Grave's patients, many of us report having suppressed TSH levels while taking T4 meds and other members while taking A combo of T4 and T3.  We are also painfully aware of the problem of lack of conversion of T4 to T3 when taking T4 only meds.  I lived with that for 25 years until I learned three years ago about the importance of FT3 and found mine was very low in the range.  After adding in T3 to my meds, and raising my FT3 to the upper part of the range, I now feel best ever.  My TSH continue through all this time to be about .05 and I have had to fight off many doctors and Phys. Assts. who wanted to reduce my meds.  

Since you have given me much to read and think about, I thought it only fair to send some your way.  LOL  I think you will find some very interesting points in this summary of a lot of references.  A number of them relate to suppressed TSH.

http://www.hormonerestoration.com/files/Thyroid.doc

http://hormonerestoration.com/files/ThyroidPMD.pdf

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Avatar_f_tn
Help please. I am having really bad mirgraines. I have been in Er many times and they can not seem to find a medication  to help. Dose anyone else have these headaches? I am also having my thyroid taken out in two weeks. Will this help the headaches? I was on tapazole but can not take it beceuse my liver enz went too high.
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Medrequest,  amazing post.   Thank you for your insight.  I've got hashimotos and can hardly function.  Your post is inspiring.   Bruce
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When I was diagnosed with Grave's Disease 12 years ago, I did suffer from excruciating migranes (migraines) too. I can only assume they were caused by the disease-a messed up thyroid can cause a lot of different symptoms. I did not have my thyroid removed but instead was treated with the radioactive iodine. Afterwards, I was then diagnosed with hypothyroidism-once I began taking the Synthroid the migranes (migraines) have not returned. Good Luck!
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Avatar_m_tn
Quick question. I was diagnosed with Grave's around two and a half years ago and went through some serious side effects. I decided to use RAI to treat the disease and so far it has done the job. I currently take 200mcg of synthroid, which to me is the best medicine one can take. Nothing else seemed to work. Today, I am doing fairly well and feel relatively good. However, I have severe issues of fatique. My TSH level is around the .05 to 1. Three months ago it was 18.6.

My question is .... does the fatique let up????? Also someone informed me people with Grave's can suffer from something called adrenal fatique. Has anyone else heard of this and if so can suppliments helps with this to increase energy?
Any feed back is good.

Scott
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Avatar_f_tn
Hi RevScott,
I am astonished that you are on 200 µg of synthroid, as generally the dose of 150µg is sufficient to handle a 220 lb man.  I'm not going to second guess weight here, but it is possible, if you are under this weight, you are actually being overdosed and indeed are feeling a bit of exhaustion as your body is reved up.  I apologize  if  dosage is something that you are your doctor have already carefully checked.  But generally, with radiation therapy, one works UP to a higher dose rather than start off with it, as hypothyroidism becomes more severe with time post RAI.  So that is one thing to consider when asking your doctor again.  Secondly, in a recently published paper:  ---Escobar-Morreale HF, Botella-Carretero JI, Escobar del
Rey F, Morreale de Escobar G. Treatment of hypothyroidism
with combinations of levothyroxine plus liothyronine.
J Clin Endocrinol Metab. 2005;90:4946-4954. ---

the authors have examined, in a double blind, gold standard procedure, mono therapy versus combination therapy with T4 only versus T4 and T3 ( a ratio of 50µg /12.5 µg ) and found that patients felt "better" mentally and physically when on the combination T4 /T3 therapy. So that is something to talk over with your doctor, and be sure to determine whether you are on the correct dose of T4.

The thought by some physicians (e.g., in Anolil, JR Hypothyroid Symptoms Following Radioiodine Therapy for Graves' Disease   Clinical Cornerstone • TREATMENT OPTIONS FOR THYROID DISEASE • 2005:  Vol. 7, Supplement 2) is that there is some facilitation activity that is normally needed for the activation of T4 --perhaps some feedback system that the T3 is providing.

Exhaustion comes from two ends of the spectrum: too much and too little free T4/ T3.

Good wishes.
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Avatar_n_tn
Hi all

I was so happy to stumble upon this forum! I was diagnosed with Grave's 2 years ago. I was on treatment for 3 months, and the thyroid stabilized. 2 months ago, my thyroid function went up from a very normal 16.4 to 45.5 and was on treatment again (NeoMercazole). The meds had no effect, and the function count went up to a dangerous 63. I have an appointment with a surgeon on 20 Oct, and would just like to know if anyone could please explain the procedure from hereon forward to me - tests etc. I have only had blood tests up to now. From what I can gather, I will not consider RAI due to the possible side effects, so surgery it is then.

I am quite nervous, as you can imagine :)
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Avatar_n_tn
Hi all

I was so happy to stumble upon this forum! I was diagnosed with Grave's 2 years ago. I was on treatment for 3 months, and the thyroid stabilized. 2 months ago, my thyroid function went up from a very normal 16.4 to 45.5 and was on treatment again (NeoMercazole). The meds had no effect, and the function count went up to a dangerous 63. I have an appointment with a surgeon on 20 Oct, and would just like to know if anyone could please explain the procedure from hereon forward to me - tests etc. I have only had blood tests up to now. From what I can gather, I will not consider RAI due to the possible side effects, so surgery it is then.

I am quite nervous, as you can imagine :)
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Avatar_m_tn
I was dx'd in 2004, and treated with radioactive iodine.  Over the past 7 years, it's been a yo-yo of symptoms and weight fluctuations (frustrating to say the least)!  Most recently, my levels & heartrate was so high, I was at danger of heart failure. A new endocrinologist prescribed methimazole & propanol and explained that a rarity occurred in which a portion of my thyroid survived the initial RAI treatment and reactivated with hyperthyroidism. So, I am thinking of requesting a total thyroidectomy at this point, and dealing with the low levels for the rest of my life without worrying about another recurrence of hyperthyroidism.

I do concur with medrequest - I believe doctors are too quick to treat numbers only and not symptoms of individual patients. If your numbers look great, but you feel terrible, what good is that?  Any advice is appreciated!
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Avatar_m_tn
lemme get this straight?  youre on 0.05mg or 500mcg a day of t4 (synthroid)??  isnt that a lot?
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Avatar_m_tn
It's easy to mix up, but .05 mg is 50 mcg, not 500 mcg.
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Avatar_m_tn
ahh.. i see! makes more sense. ive just always heard it refered to in the mcg measurement..... thanks!   btw, im a male 31 yr old with graves disease. had a thyroidectomy december of 2007. honestly, i wish i didnt. dont kno if that was the catalyst, but ever since then. never felt like the same person. idk if its because of graves progression, or acting up, but..... only way i can analogize it is, if there are souls... they seem to be stored in the thyroid! and here i was thinking it only controlled your metabolism...=(

no passion or energy for anything. scared, nervous, foggy, memory shot. aches, fatigue, depression.... i try to push on a keep fighting, but sometimes i just gotta vent.... especially because its somewhat of an 'invisible' disease and everyone thinks youre just being lazy, or 'its all in your head', or 'get over it'. if only they knew..

thx again for your quick reply, and hello to all you other thyroid patients! usually not this gloomy, but going through one of those 'spells'.... hope to talk to y'all more!
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Avatar_m_tn
Sounds like we could give you some very useful info about treatment of hypothyroidism.  How about posting your thyroid test results and their reference ranges shown on the lab report so that members can comment on the adequacy of your testing and treatment?
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Avatar_m_tn
Forgot to ask what medication you are taking and what is the dosage?
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Avatar_m_tn
after being diagnosed with greaves 2 yrs ago....I had a TT 2 months ago..i'm still dealing with the bulging eyes..is there anything that you did to help get your eyes better?
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Avatar_m_tn
Your article is very interesting. In fact, I have been trying to tell my docs that my thyroid tests are not right. Even though they appear to be normal on blood work, I feel that the medicine is not getting into the cells. I was diagnosed with graves disease in 1989 post partum,  and had a thyroidectomy in 1991. Since I had my thyroidectomy I have had nothing but problems. Extreme weight gain. Started out at 120lbs now 240. Very tired all the time especially after lunch time. Very weak, swollen, and lots of hair loss. I feel so bad all the time and I know it's thyroid related. I think these docs think I'm crazy!! I'm tired of going to docs for help and getting nothing. I'm currently on 125 mcg of synthroid and 25mg of cytomel. I break the cytomel up in 2 doses. 1 dose in the morning 12.5 and one about 1pm and it has helped with the fatique. But I feel like the synthroid is not working at all.  Infact, I went to a different endocrinologist at one point and she didn't believe in t3 and took me off Cytomel and converted me to Synthroid only and I went completely down hill. So weak and slept all day long. At that point I never went back to that endo and went back to the original one that gave me the cytomel/synthroid. I'm so frustrated because I really feel that the Synthroid is not working but no one believes me. My life since my thyroidectomy has been awful and I really don't know what to do or who to go to. Doctors really need to take the time and research these things and stop acting like it's in out heads. I know what I feel and I know it's thyroid. Are there tests that I can ask my pcp to run to determine if it's possible that my grave's is still active and blocking the medicines? I really appreciate any ideas!! Thanks.
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Avatar_f_tn
Graves' will not block the medicine.  It's really much more likely that your meds are just not adjusted properly for you.  

This is an old thread.  If you go to the top of the page and hit the orange "Post a Question" button, you can start your own thread and get attention to your individual concerns.

What thyroid tests does your doctor run?  Does he test free T3 and free T4 or just TSH?  We often find that just having labs "in normal range" isn't enough to relieve symptoms.  Many find that FT4 has to be around midrange and FT3 upper half of range before symptoms are relieved.  So, if you have results of those, please post them (with reference ranges as those vary lab to lab and have to come from your own lab report).

You can feel a lot better, so don't give up.
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Avatar_f_tn
Hi Medrequest,

Thank you for sharing your story.  It was extremely helpful to me because I was just diagnosed with Graves and Hashimoto's as all my antibodies are elevated in the 200's.  My symptoms are debilitating!!!!   I am considering RAI or Surgery to get rid of my thyroid because at least I will be able to control my thyroid function with Synthroid and or Cytomel easier than swinging back and forth.  I know I will always have Graves and Hashi's afterward, but at least the war won't be as bad at least I am hoping.  I am trying to find another Endo who will treat my symptoms and not just look at my TSH and Free 4 and then disregarding my antibodies.  

I am very interested in articles by Prummel and Brokken.  I will look them up.  I am hoping my new Endo at Cedars Siani will look at the big picture in helping me to feel better.

How are you feeling these days?
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Avatar_f_tn
I was diagnosed with Graves about a year ago & also with the eye disease. My left eye was bulging for several months. I took Flaxseed oil tablets & cut down on smoking & my eye virtually went back to normal. So try taking flaxseed oil tablets everyday. I've read alot about how this helps & it worked for me. If you are a smoker, it definitely worsens the eye disease, especially for females. Good luck to you!
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Avatar_m_tn
I was diagnosed with Graves Disease late (I believe I've had symptoms for 2-3 years but these were undiagnosed by my GP til 5 months ago & by that stage my thyroid/goiter was considered 'large'). On starting neo-mercazole I first experienced eye changes & while my Endo felt there was little known about the eye condition I researched online to insist on seeing a Eye Specialist, experienced in Graves Disease, concurrently. Mind you, both specialists seem to disagree alot & I seem to have to pass on info between them but i'm confident to best leave my Eye Care with my Eye Specialist & Thyroid care with my Endocrinologist. We've concurrently agreed due to eye problems to proceed with a Total Thyroidectomy & upside is my Surgeon, Eye Specialist & Endocrinologist are unanimously positive that this will be 'life changing'. They feel within 2 weeks i'll have restored energy, with most Graves symptoms behind me. My Eye Dr feels my eye's will return to normal within 8-12 months (as opposed to 2 years) & if they don't he can do 1 of 3 things (medicate; offer a radiation treatment; operate). My Dr's are also confident my weight can easily be managed. I had my TT surgery this week & am day #3 post op & i'm just back from a big walk. My scar is approx 3cm & will blend with crease in my lower neck. My eyes are deeper in their sockets today than they've been in months & I know this might change but i'm feeling very positive.

I believe we all run our own race with Graves. We should all do our own research - learn the questions to ask your Dr's; learn to push for things they may initially think arent needed. Find out basic & best ways to help yourself (anyone with Graves that is still smoking is an idiot - give it up!!; eat healthy foods; minimise stress; drink less); research natural supplements to support your condition (check with your Dr if you can take sodium selenium & bilberry 10,000 with lutien) & flaxseed oil). Learn what online info to take on board & what not to (as alot of blogs & info can be overwhelming & negative).

Graves isn't a great condition but it seems to be be manageable if we take an active positive role. I hope this post helps many of you.

Best wishes, k.

Best, k.
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Avatar_m_tn
I just read your post and it made me feel much better.  I was diagnosed with Graves with eye involvement in 07.  I just changed endos and the new one highly recommends surgically removing my thyroid.

I never seem to feel well and feel exhausted.  My endo says it is not my thyroid since my levels are within normal range while on PTU.  I would love to hear comments about this as well as how the eyes improve after surgery.

Thank you

Sue
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Avatar_f_tn
Forgive my spelling and length I just don't want to leave anything out.

I was diagnosed with hyperthyroidism 11 years ago. Because I was pregnant it was treated as pregnancy induced hyperthyroidism. Later after having the baby and the thyroid was getting worse and my eyes start bulging three endo doctors later did they finally diagnose me with Graves Disease. I was hyperthryoid for 6 years and spent many many days at doctors. My heart rate was about 170 during rest and went well over 200 some days. As I adjusted to this it didn't bother me but for those who think hyperthyroid can not hurt you that is very wrong. As many doctors told me, eventually your heart is not going to be able to keep up and will just give out. Our hearts are not supposed to beat at a fast heart rate for that long and can cause some serious damage after awhile. I am now 5 years post surgery and still have bouts of SVT. Which brings me to treatment. I elected to have surgery as I had 5 kids at home and didn't want to be isolated from them. I was referred to a very good doctor which I am glad because my goiter at this point was about the size of a baseball. (yes very large and noticeable) The surgery was a success though because of the damage over time it did take about 3 hours longer then expected as they had to biopsy everything because everything was so distorted. My parathyroids was being damaged from the enlarged thyroid so two had to be transplanted into the side of my neck. Scar is very faint and only really noticeable when I tan. Yes I gained weight but my endo told me I would not gain no more then 10 to 20 pounds and she couldn't have been more right. I gained right around 20 pounds which was a little more then I wanted to so with the right diet and just eating  healthy lots of fiber and protien I am back down 10 pounds and right where I want to be.

So the reason I am writing my story though is because of what happened after my surgery that may have changed my mind on my course of treatment being that I was told about it.

Okay so I had my surgery and as I said everything went well. But what I didn't know is Hyperthyroidism blocks calcium absorption in the bones. Parathyroids is what produces calcium in the body. So between the blocking and the parathyroids being blocked out and not producing enough calcium pre surgery my bones were starving for calcium. Well next day after surgery when I was do to go home I was told my calcium was a little low and I would have to stay another night. Knowing nothing about calcium and its real side effects I just went along with it a little annoyed because I just wanted to go home. That night my hands because a little stiff and hard to open and it was the calcium which they gave me some through iv and the symptoms reverse instantly. So day two my calcium is low again. But this time the doctor comes in taps both sides of my face says I don't have symptoms and lets me go home. I go home on tums, calcium in the form of pills and liquid calcium. I was taking roughly 30,000 mgs of calcium a day and ate tums non stop. literally one was in my mouth every second I was awake. First day home I was fine. Second day I wake up my hand is feeling a little funny again so I call my family doctor for a blood test and since my husband was sleeping (he works 3rd) I go to drive myself to the clinic for blood work. About half way there my hands completely curl in and I can not open them. Lucky for me I was on the phone with my doctor while I was driving. I explained to the doctors wife I can not move my hands and Im driving so i pulled over at that time my arms curled in and I dropped the phone. I was stuck in tetany on the side of the road for 30 mins before an ambulance found me. My calcium was extremely low. ER treated me with calcium and released me. Next day my hubby decides sleep or not he is driving me to get blood work for now on until this is figured out. So we go into town to do our running and get blood work. While we were still there doc calls and says my calcium is low again but not to bad. We started headed home when I told him take me to the ER and within seconds was in full tetany again my hands and arms to locked tight. By time we had reached the ER and they put me in a bed my entire body was locked included my lungs. I could not breathe though I was full aware of everything going on around me including the doctor asking me if I wanted him to breathe for me. Lucky enough they were there in mins with the calcium and instantly reversed. I was discharged once again but refused to go all the way home as I live 25 mins from the hospital. I am scared as all heck now to what is going on. Went straight from the ER to the front of the hospital to get blood draws, then bought me a bottle of tums and camped at a friends until I heard from the doctor. Sure enough I was low again already. My family doctor admitted me into the hospital that night and started me on IV calcium. It took about 10 days before a doctor could diagnose me. I had a rare condition cause hungry bone syndrome. I spent and entire month in the hospital before they were able to find a way to get me off the iv with oral calcium and my levels not drop. I came home finally but at first I had to take the oral every 2 hours and that included during the night among a combination of many other pills to induce the absorption. I got blood draws daily sometimes 2x a day for months. After about 6 months I finally got to a point where calcium was only a few times a day and then after about a year I wasn't taking any. Though later I ended up locking up again just not as bad and had to start calcium again but only once a day now. Here's where the problem was. Because my bones starved for calcium for 6 years when the thyroid was removed the bones began to absorb calcium from the blood but were taking more then what I could put in by taking the supplements. Then to add to further problems because they had to biopsy two of my parathyroids and transplant the other two they shut them down for a period of time thus I had no organ to produce calcium. Eventually I had to let my calcium go a little low again to jump start the parathyroids into working again which thankfully they did but to this day I still have some problems with low calcium still have to get regular blood draws and still have very bad anxiety anytime my body feels a little funny. I can't say even if someone would have told me it was possible I wouldn't have done the surgery because knowing me I would have probably said its so rare it wont happen to me. But knowing then that it would have I would gladly take the 10 days isolation from my kids verse what I went through and ended up being away from them for a month anyway.

Now with all this possibly under control and better managed. They are now saying I probably have another auto immune disease lupus.
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Avatar_f_tn
Hi! Did you decide on a treatment option? Surgery or rai? I'm 26 and was diagnosed with graves in March. It's been a roller coaster! I was on a low dose of ptu ( I'm not keen on medicine, so my endo started out low) ...we found that I'm allergic to it and will start tapazole tonight! My endo says I will just need rai and to do it soon. She does not want to do the tt because of general risks associated with surgery...not a great reason. I had a complete hip replacement when I was 21, and several other surgeries. Anyway, just feeling so lost and pushed to do rai. Help!! Tt vs rai...
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Avatar_f_tn
I was doing a search to find out if Graves goes away and found this forum.  Thanks for the answer. It seems that most on here have had surgery to remove the thyroid. I did the RAI treatment which was just a little over a month ago so I guess I have some time to go before I know if this worked. Have any of the other had the RAI treatment and how effective is it.
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Avatar_m_tn
hi everyone could use some help and advice........i was diagnosed with graves disease in may of this year after suffering extreme weight loss, hair loss leg pains shakes and jaundice, i was put onto to 40mg a day of carbomazine which was 6 weeks later droped to 20mg a day, whilst on this medication i suffered terrible joint pain and swelling and soe days could not walk and struggled to pick my baby up, i saw my specvialist and he told me this was not related i knew it was as prior to the graves medication i had been perfectly heathly but he would not listen,ive not taken any medication now for 3 months the joint pain copmpletly went and im waiting to see the specialist again my weight has returned to normal and so have my bloods but im feeling really ill agin now hair gloss very irritable and tired im so fed upnow please if anyone canhelp????? many thanks
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1139187_tn?1355710247
candy ,

you should start your own thread.    YOu could get better results this way.  Please post your labs and what tests they are doing on you.  It almost sounds like whatever is wrong with you is not keeping up with the medicine you are taking (maybe your graves or TSI is getting worse) but your medication needs to be increased.  

Also do you have nodules?  have you had a sonogram?  what did it show?
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Avatar_f_tn
Hi,
I realize that this is an old comment, but I was curious, what do you mean your eyes went back to normal?  I was diagnosed with Grave's disease in 2010 and had a total thyroidectomy.  My biggest complaint are my eyes, I feel like a freak. I've seen three different eye doctors and all three say that mine aren't that bad.  No one will talk about surgery, and scare the crap out of me saying that if I did radiation I could eventually go blind, and if they put me on steroids I'll get fat, along with tons of other awful side effects.  They don't fully close when I sleep, I have to where sunglasses all the time due to the sensitivity, and people stare at me all the time.  I cry often because personally I feel like a freak!  I just wanted to know how your eyes returned to normal? Did you do anything in particulare? If anyone has any imput I would love to hear... Thanks!
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Avatar_m_tn
Hi =)  I normally do not comment on threads...but wamted to share my experiences with you.  I was diagnosed with hyperthyroidism and Graves' in October 2011.  In April, 2012 I had a total thyroidectomy.  Just 9 days ago, I had decompression surgery.  That is where they remove bones in your face to make room for your bulging eyes.  You will need to speak with an oculoplastic surgeon.  I have a great one here in Phoenix, AZ.  Also, after the decompression, they still need to fix my eye muscles since they were weakened by being pushed out.  Once that is handled, they can actually fix your eyelids as well.  My eyes used to not close and I felt the exact same way you did!!  But there is hope!! You just need to keep asking and keep looking.  It's expensive to see multiple doctors, but it helps.  After the oculoplastic surgeon, look for an opthamologist for the muscle and eye lid problems. GOOD LUCK!!
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1139187_tn?1355710247
google "graves eye disease"   also look at images of the late actor marty feldman.
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Avatar_f_tn
Thanks annajonas63! I just feel like such a freak I've seen four doctors that specialize in bulging eyes and they all say that my condition isn't bad enough for surgery.  That even though I can't close them at night, etc. that no one in their right mind would operate on me because the risks are too high.  All of the doctors I've seen in Ct. are so mean.  They make me feel like I am wasting their time, they have no idea what this disease has done to me and how sick it has made me.  Sometimes I wish they would have a little compassion, oh well.  The only treatment that one doctor is willing to do for me is the high level of steroids, which he said will make me fat etc.  So that's unfortunately the only treatment that's being offered to me at this time.  I'm very happy for you though.  Sounds like you have really good doctors in AZ, and hope everything works out for you in the future.  Thanks again!!  
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Avatar_f_tn
Thanks annajonas63! I just feel like such a freak I've seen four doctors that specialize in bulging eyes and they all say that my condition isn't bad enough for surgery.  That even though I can't close them at night, etc. that no one in their right mind would operate on me because the risks are too high.  All of the doctors I've seen in Ct. are so mean.  They make me feel like I am wasting their time, they have no idea what this disease has done to me and how sick it has made me.  Sometimes I wish they would have a little compassion, oh well.  The only treatment that one doctor is willing to do for me is the high level of steroids, which he said will make me fat etc.  So that's unfortunately the only treatment that's being offered to me at this time.  I'm very happy for you though.  Sounds like you have really good doctors in AZ, and hope everything works out for you in the future.  Thanks again!!  
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Avatar_m_tn
Dear AR-10,

What research have you found that indicates that Graves disease is incurable and that it can lead to other auto-immune diseases?

Also, have you found research indicating which other tissues or organs can become the focus of the auto-immune issue after a thyroidectamy for Graves'?

Thanks,

DMK
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649848_tn?1357751184
AR-10 has not been active on the forum for several years, so I'm sure he won't respond to your questions.

Being an autoimmune disease, Graves is incurable.  Once the thyroid is removed, the antibodies will go into remission, but you still have the disease.

Graves disease doesn't lead to other autoimmune diseases, but once a person has one autoimmune, the chances of getting another, become greater.

Thyroid antibodies only attack the thyroid; they don't refocus on another organ, once the thyroid is gone.
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Avatar_f_tn
Thank you for your comment!! I am one of the idiots with SEVERE Graves and resumed smoking on diagnosis. Your comment made me chuckle and then I decided enough was enough. I will stop smoking so many thanks for that. By the way I have opted to have no operation and will not be having radiation. I will be seeking all things holistic and my specialist estimates I have a 30% chance of getting better in two years. Well I shall take those odds thank you very much. From my research it seems having the total thyroidectomy causes more hassle than trying to actually HEAL the thyroid which is what I plan to do. The docs these days always go for quick fixes. It soooo angers me!!
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Avatar_f_tn
Oh little sister! What a horrible horrible frightening experience!! Thanks for posting! It was long to read but you had to explain properly and thank you so much for that. These types of stories only make me more determined NOT to be sliced open and have a vital organ ripped out. Our bodies are designed to heal themselves I believe. And with Graves the thyroid is so so sick that it needs HELP and not to be killed off!!
My fight continues!!

Take care and I hope you are feeling better!!
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Avatar_f_tn
Hi there. I wish to start my own thread but am new to these types of forums. How do I start a thread please?? many thanks
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649848_tn?1357751184
I see you figured out how to start your own thread.  I've responded to one of them.
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Avatar_m_tn
Thank you for your comments.  Are you sure the antibodies will go into remission? Will the eye problems subside?  I am thinking of having my thyroid removed in time.  Best wishes. Rose
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649848_tn?1357751184
Once the thyroid is removed, there's nothing for the antibodies to attack, since they don't move on to other organs.  It may take some time, but they will go into remission, eventually; but even if they didn't, there's no more damage they can do, without thyroid tissue to attack.

Since there are no "natural" cures for thyroid disease and once the thyroid has been damaged there's no way to repair it, many people end up having theirs removed.

Wishing you the best.
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649848_tn?1357751184
Also meant to say that you'd have to talk to your opthamologist about the eye problems.  It may depend on how severe it is.
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Avatar_f_tn
Hello,
I am happy to have found this forum, It has a lot of important information that will help me with my decision.
I have been diagnose with grave disease for about  7 years now.  I have been on tapazol and propranol on and off because I hate taking meds and I am not that dicipline when it comes to my health.  Doctors have told me over and over that it would be the ideal thing for me to do the RAI.  I chose not to do it because of the many side effects... I continue to have palpitation and my biggest fear is ending up with a stroke. ( God forbid)
I would like to have surgery and after reading everyone's post, now I am scared.  I am not sure of exactly what to do...I don't have nodule but my thyroid are enlarge and very noticeable.
Does anyone have any advice for me please?

Desperately seeking a better solution.

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Avatar_f_tn
I had graves Disease for many years unknown and untreated. I wanted to take care of it naturally but I was too sick. I had surgery finally and thankful to better than I have in years. The muscle wasting vanished, the tremors stopped and my strength returned right away. The joint pains also subsided thankfully. I never had any eye problems. I am 11 months post-surgery and I am on generic levothyroxine 75 mcg.

I have found the best advise I was given to date for me is this: NO GLUTEN!!, minimize stress!!, and REST, REST, REST!! when I am tired! I eat NO SUGAR, NO CAFFEINE, NO PROCESSED FOODS, NO PRESERVATIVES... I eat REAL food - I can't afford organic but I can eat raw fruits, raw vegetables, eggs, meats, gluten free carbs, and use a little raw honey, pure maple syrup or agave for a treat once in a while. It was NOT easy but it is worth it because I feel so much better eating REAL food. I also take a good vitamin. I switch off of two different brands for no real reason. I use Peter Gillham's liquid vitamins because my chiropractor carries them and vitamins from womentowomen.com which I really like they but are more expensive. I had thinned, breaking hair and these have made the difference in that.

I also QUIT using shampoo after reading an article that shampoo is actually hard on your hair and I found that to be true for me even trying the shampoos that promised deep conditioning, to fix breakage, etc. It seemed that while my scalp got greasier quicker the ends just became drier. I scoured the internet and came up with my own recipe that used a blended mixture of avocado, honey, yogurt, egg and olive oil and it helped some until I washed my hair again. I tried the "no 'pooers" movement and after the "not sure I liked it" 2-3 week transition period I am so thankful I tried it and I intend to stay with it! My hair looks so much better! I usually wash in the shower and I pour over my head  2 TB baking soda in 1 cup warm water and work it into my hair like you would shampoo for about 3-4 minutes. I rinse it very, very well for several minutes. After that I pour a rinse of 1 cup warm water with 2 TB apple cider vinegar in it. It immediately softens your hair like conditioner but without the weight of conditioner. I have been doing this for 2-3 months now and am very satisfied. I have used shampoo 3-4 times after I worked out in the yard becaue I was not sure the other would get my hair "clean" enough for me but am not as happy with how my hair looks after I use shampoo as when I use baking soda wash and vinegar rinse. I don't notice any vinegar smell and my hair smells very, very clean - don't know how but it does!

So, all in all - I am thankful I had surgery - I went to Mayo Clinic in Rochester, MN and though it was not without mishap (I had an emergency surgery due to a complication only hours later - they cut a small artery going in and left it slowly bleeding which in a few hours time became a serious problem!) I am doing fine. I will never be what I was before I got Graves Disease BUT I am also years older than I was before I became sick. With watching my diet, going to bed early, napping when I am tired, watching my attitude towards others which really alleviates a lot of stress, doing a little exercise like stretching (Graves Disease seemed to make my muscles tight and they still are but getting better, too!) and simple bike rides and walking ( I taught fitness classes and personal trained for 20 years at a YMCA and our University here) I am improving and have a better quality of life than I thought I ever would again. DO WHAT YOU CAN DO TO HELP YOURSELF! It is empowering and positive!
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Avatar_m_tn
Hi, thank you for your effort in sharing all of that information.  It was very helpful as I am thinking of opting for a thyroidectomy soon and need a good idea, past what the doctors say, of what to expect.

Thanks

Gina
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Avatar_f_tn
HI my name is Deirdre and I just had a consult with an eye specialist who wants me to go to Tufts University asap to have decompression surgery (well consult first) and says although I had my thyroid removed in 2007, I have severe case of Graves' Disease. I am scared and dealing with inept doctors-my story is so long that I was wondering if there was a way to talk to you more-I am now disabled due to severe fatigue and major eye problems-I wont even go outside b/c I am so embarrassed!
      I worked as a paralegal for ten years til 2009-then home-then applied for SSI-got denied b/c some specialist said I did not have Graves anymore b/c I had my thyroid out! Well today I got the letter saying that was incorrect-I am at my wits end. Since my dx in 2002 I have never been euythyroid. I'm exhausted-my kids think I'm lazy-depression is deep.
I would love to tell my story as I think the information could help a lot but too tired right now.
Will try to check back tomorrow.
I hope u check back in.
Thanks, Deirdre H
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Avatar_f_tn
Hello
I just read your post although it is Nov 2014.  Could you tell me if you were tested for anti-tpo and anti-thyroglobulin at this time and if you did , did you have higher than normal levels for someone who had thyrodectomy and RAI>
Also the link to the texts you mentioned would be great....
Thank you
Joanna
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Avatar_m_tn
Medrequest has not been active on this Forum for a number of years, so it is unlikely that you will get a response from there.  Is this the link you were looking for?

http://www.ncbi.nlm.nih.gov/pubmed/12970276
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