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GRAVES DISEASE HELP !

Cna someone how things will change after I have My Graves treated ? I read that most that have it treated end up with HYPOTHYOID... also seems the word is most dr's have no idea how to prescribe T3,T4....and amrour might be the way to go ?? any info sugestions would be great
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595495 tn?1225479893
There is no cure for Graves. What they have to offer is:

1. Suppress your thyroid with medication (US doctors generally dont like you on antithyroid meds longer than 3 years)

2. Surgically remove your thyroid and you go hypo and take replacement forever.

3. Kill your thyroid and you go hypo and take replacement forever.

You end up taking meds one way or the other. THere is no easy route. I would suggest finding a doc who will LISTEN to you and you feel comfortable with. Treating Graves can be a long process and you need a doc you can talk to and who will listen.

Peace be the journey

Paja - 3+ years PTU, RAI 6-08
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Avatar universal
I found out I had graves disease in 1992. I was treated for my hyperthyroid with the medicine PTU for 2 years. I was good for 12 years (2004) then took PTU again for 1 !/2 years good until now (2009) I think had ovarian cancer and the chemotherapy and stress probably triggered it.
Now I am back for tests and probably will go on methimazole this time. What the previous post said about treatments is what I know. It always takes a little time to balance, but then I feel much better.
Hang in there, Jane
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Avatar universal
well...im going for the kill my thyroid..now from my readings,its common to get HYPO after ..but my dr friend told me thats because most docs wont take the time to do it slow..they try to kill it 1 it in 1 try..I in no way can afford to be HYPO...my whole life I was HYPO  I think..im ana athlete..but always was heavy...etc..I took cytomel as many do as a weight loss tool,yes it was a big mistake...id guess that what caused this..how did it change you guys ? now that HYPO ? thanks for the reply..
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595495 tn?1225479893
After RAI you MUST go hypo. That is the only way they know for sure the radiation killed your thyroid gland.

THEN you start the replacement and they bring you back up to the normal range. They dont keep you hypo any longer then they have to. Some people go hypo in 4 weeks after RAI others take longer.  

( and yes your WANT them to kill it in one dosing....your taking RADIATION the more you have the higher your risk for cancer...plus you dont want to do it twice, trust me)

After RAI for me the worse side effect of the going hypo process was the mental fall out, ( depression, suicidal, homisidal thoughts, anxiety of epic proportions) Then I also suffered exteme fatige and exsaustion. I had RAI June 5th and labs showed hypo Sept 30th. They dont call it hypo he// for nothing.

If you are still active in athletics (ie you got games coming up etc) I would advise you to expect to not feel good enough to be at your peek.

Benny you are KILLING off a healthy body organ...its not going to be a walk in the park. This is a major medical procedure and life altering stuff here. Plan to give yourself time to  go through this.  I had RAI June 5th of 2008, there still tinkering with my dosage to get me in the right range. Some people are easy to do others take longer.

Also you didnt cause this. Graves disease is an autonomic disorder.

You said: "how did it change you guys ? now that HYPO ? "

As to how did it change me? Im feeling better, no more scary heart palpatations, slowly feeling better. Its been a long slow process. I still feel like me, I didnt grow any extra arms or a third eye. One side effect for me has been muscle weakness, but were working on that.

and to be clear ....Im not STILL hypo. You wont be left hypo forever. you dip down there and then they bring you back to the normal range with replacement medication. You will take that for the rest of your life.

peace be the journey

Paja - Graves, PTU , RAI

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Avatar universal
1st off thank you very much for the reply..now you said ya not hypo for ever..but if you need meds..then yes you are no ?? and its very well known..even if you read here..most never get the right feel on meds..cause of the battle.of T3,T4..armour...my prob is..this could have not happen at a worse time..I do not have time to not feel good..I mean..I could stay this way for another yr...Id be ok with that..when you say heart beat fast.. what was ya  BPM ? (bets per min) mine was about 55-60 for yrs..which is excellent..now its about 80-100 at rest..but as we know...its no good for the  heart,..,ans muscle probs I could do with out..I already get injections now.
and you said you want it killed 1st shot..but my readings say that msot of the time..they kill it 1st time..and it to much..and you are hypo..some say if you do a lil at a time..this help to not get hypo...if mild enough..cant you use meds ?? after reading this..im not so sure I want  it now..may I ask what meds you are now ? ,see in my sport..no play..no pay...unlike other spots..( pro boxer) . and I thought I did cause it..think about I have been taking pills to speen my metabolisum up for over 15 yrs..and more flight or flight..cortisol..and over work for the andrals..Ive taken EPHEDRA..and still have plenty..and I took Cytomel (T3) for some extra weight loss...the liquid kind..not smart I know..but I was comming off surgery...and needed to fight again as soon as possible..and gained like 35 lbs..my met was already so so slow..so now..eh..but anyway thank you for  the reply..I will have to rethink this..
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168348 tn?1379357075
WELCOME~
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Avatar universal
Ive been doing some reading..could any of my injections have anything to do with it ?
medrol is used at times with thyroid..I ve been getting injections of depo medrol for over 1 yr..every 3  weeks..also lidocaine ,bupviocaine..,which do mess with adrenal..cortisol..which all kinda goes together wit thyroid..
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Avatar universal
my doc just prescribed me Methimazole after having the uptake scan...any info on this would be great ? isnt this the med if your going to have the RAI  done ? I do not want it done yet..any help would be grerat
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Avatar universal
Benny-

I have been on methimazole for two years and close to rolling off..which happens if your graves goes into 'remission' I would give it a try in the short term. It's hard to make decisions when you are hyper...you just want desperately to feel better. Methim is a long road, but all options are as has been stated. I would work with your doctor in the short term to try Methim and also talk to him about your other shots/meds/vitamins.

Good luck- it does get better.
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Avatar universal
thank you for the reply..so the fact  im on 10mg ,once a day..might suggest its not to bad ?
also..I feel fine..a lil tired here n there..and faster heart beat ,but I could go like this..no probs..its  1 pilla  day (10mg) and 10  month supply...and you said shots ?? what type..I am  an athlete and train 4 hrs a day...how will the pill affect that ?
again,thank you very much
Helpful - 0
393685 tn?1425812522
Oh my...............

Bennie -

Look.......... you are looking at this all wrong in my opinion. It seems ( and I respect you) that you are more worried about your althetic ability then your health and have been doing that for years. I would imagine you are paid for your preformance as an athlete - so your survival mode will be upsetted too. I can totally understand your thoughts - I had them too - but I was obessed about gaining weight for vein reasons in regards to antithyroid meds and ablation with RAI - when my Graves was uncontrollable.

Your looking a your body "looking" healthy - but your body  "isn't" healthy right now.

Truthfully - I almost deleted your posts about taking Cytomel for weight loss. Then I thought about it and feel it should stick as permanent record. Do you know why??

I think it is about time people realize that these drug are NOT intended for what some use them for and IF you CHOSE to take them - your health WILL suffer in more ways than one. Sure they are promoted "underground" for achieving success with weight - do they say it will alter you permanetly - Nope -

Yes - for some you may lose a few pounds and stagger around like you accomplished something but in the end you are destroying your life years and health.

I must run into a dozens of these posts at any given time and remove them - but why?? - there are so many people in this false sense that a "pill" will help them get what they WANT - but forget to consider the consequences, which can and WILL eventually kill them or permantely disable them to live on the cutting edge of death.

Scientifically and I suppose medically  - Graves antibodies are not caused by drugs - all human beings have some form of antibodies "lurking" in their system - so you were "one of the lucky ones" ( as I was) that had Graves particular antibodies.

Common sense -after going through he// with this disease (and being an idiot myself in my younger years thinking I was invincable to damage and death) - eventually you come to the realization that abusing your body with drugs - smoking - stress (whatever) will play an effect on you. I can't say for sure that Cytomel was your cause - yet if you went to such drastic measures to run your body into the ground with T3 to lose a few pounds for preformance-  well those antibodies will rear up and multiply because of the shape the body is in and definately will start effecting your health and living.

How far do you want to go with this attack?? Are you willing to continue looking at not dealing with what is happening right now and still push forward - or are you willing to step back and realize this may be your wake up call with your body screaming to you that it no longer can continue the same path or it will stop working?

Your swaying back and forth on RAI and "can't afford" to go hypo- but you can't afford to die from hyper either can you? These two are your choices in most Grave's situations. There are miracles out there (member CarMan) that got a second chance into natural remission - but I have never read anyone else here or ?? that had that happen and I have been on this crazy road for 6 years of thryoid he// -

There is NO measurement of RAI available to guarantee that the ablation will return you to normal health. It's either to go through endless he// with tiny dosages and damage your body more  - or pump you full of RAI to end this organs function and begin a new chapter without the gland. PTU's also have side effects - and surgery too.

Seriously - I am not trying to scold anyone here - I want you to get in check with yourself and realize you can't continue this mind frame anylonger and change must happen.

Medically your BP has risen - so you are stressing your heart to a degree. Depending on how strong your "living" muscle is - will tell if you can continue this same path or need to look at permanent options to stop this hormone and antibodies from plaguing your body. Truth of the matter is - if your heart can't tolerate the pressure - your body will no longer work - We all know what happens next........ and your life will end taking your altheticness with it.

Please start looking at yourself 20 years from now and not in the moment. I believe you want to be around and want to have your life - more than your outward athletic ability. Look at this chapter of life - of finally correcting yourself health wise and returning your body to work for you. It can happen with losing the gland whether ablated or remission. Just know you are about to make choices to change your life.




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Avatar universal
1st of of course im not mad..and I respect your post..your 100% right,my athletic stuff comes 1st..it has to,im my living.,. did you see the post above yours from me ?? could you give me your opion on that post..seems maybe its not as bad as once thought ? since im on TAPAZOLE 1 pill a day (10mg) and he gave me 10 months of refills..today  is my 2nd day taking it..my hand tremors stopped 3 hrs after taking my 1st dose yesterday..and i felt kinda sick most of the day...so do you think ,that the fact im on 10mg once a day..is good..or bad...im hoping it means the DR. thinks we can control it this way..I have not seen him yet to ask..he prescribed over the phone..so I do not know how much of my thyroid was affected..I should know Monday..
once again thank you for your post....
Helpful - 0
393685 tn?1425812522
I think the protacol your doctor is following is traditional and common for a beginning Dx of Graves disease. He ( your doctor) wants to see if you (he) can control the Graves on meds first before moving into permanent ablation. How impatient you are or in denial is your ( mine) fate.

I did that too - I was inpatient with not feeling well after starting it and the endo caring for me was not patient either. Kind of an a$$. Short - non disscussive and had the bed side manner of a judge :)  So he chose to ablate my gland only after 6 weeks of anti thyroid meds because of my constant questions on why??  Yet I was suffering very high BP's and heart rates. Can I contribute it all to Graves. ??Looking back I don't think so.

Truthfully - I think I wanted resolution immediately and worked my self up into a high stress that probably contributed more to my anxiety then the actual graves did at times.

No one - I mean - no one - sat me down and explained to me how I needed to let "time" be on my side and to reflect back to being more patient with things, to change things within my health and life - that would "maybe" give me a chance to be better.  

I was an "army within myself" and "on a mission" to get this solved "yesterday" so I could go back to my life and ways.

No sense for me to look back and see if I made the right choice anymore. Could I have been dead if I wouldn't of been ablated...?? maybe....... I can't go back and hash that - this is what I am dealth with - I just want people who are new - to know you really need to take a step back when thyroid disease hits and see what maybe went wrong.

Reality check in a sense.

Its nasty Bennie - especially when you are a fighter like me and can't accept at the beginning that you are human and your mind can't wrap around the fact this happened. It's like it isn't real. I was too "big" to have this happen is how I look back and think I thought. It's like a death within the person - ( at least for me it was ) - that reality now has set in and "change " has to be done to continue on. No more invisible - no more unreal expectations of myself and no more conplusiveness and especially no more forgiveness when I was conplusive.

Do you get how I mean that?

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Avatar universal
Hi Benny,
I posted before that I have been treated twice for my Graves disease, Both times with PTU and then I went into remission for the first time it was  for 12 years. I am in my middle fifties considered very active and feisty. When my thyroid is balanced I can walk/jog 5 miles, play 18 holes of golf and clean house ALL IN ONE DAY. When it is off my heart will pound  out of my chest just walking to the mail box. Plus I am always on edge then.
Treatment with meds will make you feel better and balance your whole body. Then you will feel better and actually be able to perform better as an athlete. Without the meds and a balanced thyroid everything will get worse.
It will get better.
Take care,
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Avatar universal
Maybe I should mention Benny that I too have Graves, had Atrial Fibrillation 3 times in 2 weeks prior to RAI last June 2008...had to have my heart 'shocked' back into rythm on the 3rd episode and funny enough...one more thing.
I had 8 mcl RAI and was HYPO after FIVE WEEKS!

As for the antithyroid meds, I was on 40mg Carbimazole a day (same as MMI) and after 12 months on it , Hyperthyroidism and Graves was still was uncontrollable.
It all depends on the antibodies levels in regards to remission.
Some find it....most never do.

By the way,......I am doing great now on a T4 med 8 months post RAI. :)

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Avatar universal
ok,no one answerd me...does it look good for me that im  on 10mg a day..and its working fine ? and I am a fighter alright..lol  pro 1 well as of right now...If I had it my way..meds for 1 yr or so..then do what I must...its only been 4 days..but my heart rate is down to 70 at rest...was 100...hand tremors stopped fully..so maybe good signs ?
as always thanks for your replys ! any info,idea's or thoughts it great ! I should talk to him today
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393685 tn?1425812522
It sounds good. Start there - it seems like it is  slowing things down for you and that is a good sign. -

real answers will come on your next labs.
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Avatar universal
Taking 10mg of anti-thyroid meds shows that you are not in the dangerous zone so to speak and that it is most probably 'thyroiditis' or T3 Toxycosis you are experiencing at present.
Further tests will determine that.
Stick to the 10mg and see how you go but if it has only been a few days and yr heart rate is down to 70bpm then have bloods done 3-4 weekly or you may go hypo on the anti-thyroid meds.
Either your levels arent too bad or you are super drug sensitive (like I am ) where the meds work fast.
Because of my drug sensitivity, I had to have bloods weekly then fortnightly instead of the usual 6 weekly labs.
Ask your Doctor about this.
Good Luck :)
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Avatar universal
Just because you go hypo after a TT or RAI does not mean you will necessarily mean you will gain weight. I never became over weight. Yes it took a while to get my dosage correct, but after that I was fine. Unfortunately I started having level issues AFTER 10 yrs of my TSH being stable. I am either being over or under medicated. (currently had another dosage change). Even when my TSH was up I did not gain weight.

I had the RAI first for graves/goiter/hyper, but doctors waited to long to figure out my problem that the only solution was surgery. I don't regret it. I am currently under weight, so hypo does not always mean weight gain.
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Avatar universal
hey guys...what about exercise ?? being a pro athlete I have to train very hard..I feel ok doig it...this am ,5am I ran 5 miles...is it dangerouse to exercise hard with graves ?
Im on 10mg a day Tapazole...thanks folks
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Avatar universal
Just found out a few months back I had GRAVES DISEASE
(hyperthyroid)
lab was before.

FREE T4 2.0 0.8-1.9 h
TSH <0.004 0.400-4000 L
did not take T3
was put on TAPAZOLE 10MG A DAY
AFTER 2 MONTHS LABS ARE

FREE T4- 0.8 0.8-1.8 normal (barly no ?)
TSH 3RD GEN- 1.98 0.40-4.50 normal
FREE T3 - 216 230-420 LOW

hows this look ? any info..ideas..about graves..as we know treatment for graves makes most people HYPOTHYROID...WHICH I DO NOT WANT !
if this is the wrong place to post this..let me know.
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Avatar universal
Your Free T3 and Free T4 are low and shouldnt be.
They should be mid to high range and your TSH around the 1.0 - 2.0  mark.
You now know you have an autoimmune disease that will be with you for life.
Graves Disease.
It isnt the end of the world but it is time to now decide which way you want to go.
Your antibodies levels were...???
If you didnt have them done, get them done.
The higher the antibodies, the least chance of remission in Hyperthyroidism and Graves.
Give away the body building injections as your body needs to heal and wont be able too if you are taking any form of steroid shots.
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Avatar universal
did I say somewhere im on body building injections ? and my endo called me said yup,your throid is normal..so whats that mean..? Im staying on Tapazole ? this dr. loves to call and leave me a message..no office visit
how do you bring T4 & T3 both up...I know cytomel is for T3....let me guess synthroid ?
the most over used RX going,and junk at most times...thank you for your reply..
STELLA ! where are you...hope all is well
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393685 tn?1425812522
No  -  you don't need additional medication like Synthroid or Cytomel. At least I don't believe so.

I think you need to tweek down the Tapazole.

Graves or ( Hashi) - it doesn't matter which. These are antibodies and they are "on a mission" to do a job to a thyroid.

It's anybody's guess on when they choose to rear up. You may be having a quite period with Graves right now and the meds are slowing normal conversion and function levels
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