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Graves Disease Need Answers help

Hi there I was recommended to this great group for information on RAI treatment, medicinal treatment, possible advice on which I can start out with and such etc...

I am 31 years and was diagnosis with Graves Disease this past July, although the 2 endocrinologist I went to did not explain what this was or if this was cancer or how to start treatment for this hyperthyroid problem of mine, I was rushed in about 10 mins time from both of these endo's office and was robbed blind of a consult fee of both 400 dollars each. I sorely learn that that endocrinologists are huge thieving doctors with massive egos and since they are so desensitized by these thyroid patients symptoms that they yawn and jusyes their patients to keep them quiet instead of assuaging their fears what evre they may be or however simple their stupid questions might be.  I lost my job 3 years ago and since I have no health insurance I deceided to go to my local hospital's ER clinic, so I can then be referred to the Endocrine clinic later on that is what i was recommended to do. Long story short, I was put on sliding scale to pay for my physical exam through the hospital ER and then I was given an appt for the endocrine clinic for 3 months down the line, I am still very angry and extremely in tears because when everyone I spoke to that has Graves disease is telling me to get treated ASAP I can't get an appt earlier enough to save my own life. I am on beta blockers (Metoprolol Tartrate 25MG 2x a day) from the 1st endocrinologist's and then for about 2 weeks I also filled the endocrinologist's prescription for (Methimazole 10MG 1x a day).

Now before I went to this hospital clinic I wasted all this money on endocrinologist shopping and then found off the internet about an internist. this internist told me that endocrinologists are out for one thing fattening their wallets by pushing patients on this RAI (radioactive iodine treatment), she was making such excellent sense that she even went as far as to tell me that even doing a radioactive uptake scan is a non because I am still 31 and if i ever plan to have kids sticking any tupe of radioactive material was NOT good at all for me. She also told me that Methimazole is the most allergic and horrid medication on the planet and that the endocrinologist that prescribe it to me prescribe it wrong for me and to take that would create more harm than good for me such as bone marrow problems, liver & kidney problems etc etc....

Needless to say she scraed me straight and sent me off to the this hospital's clinic and told me to come back with new blood tests results and to come back with a sonogram of my thyroid. I have copies of my blood test but no sosngram because the hospital's endocrine clinic is the one in charge of sonograms and unless and until they say I can have one , I don't have one due to my late appt date they set me on 3 months from now.

I would like to know can a person with Graves disease be able to SAFELY and successfuly live off the thyroid medication for the rest of their life or does one have to have RAI treatment/surgery when the medication's effects wear off after awhile?

What are the pros and cons of Methimazole or PTU and which one causes less itching, headaches, or hair loss? Are there any other diffrent types of medication other than these two that i can take to manage my hyperthyroid levels?

Are both of these medications given on a 3 to 4 month basis and then your ween off of them when you thyroid levels are abckl to normal range?

What are the side effects or Radioactive iodine treatment and/or radioactive uptake scans after you have them done? Does one have to live on Synthroid for the rest of their life after having the RAI treatment done?

I have also heard that being hyper is better than being hypo because when one is hypo your muscle mass fades and your proen to being extremely slower with your life activities?

Also, is anyone from the Long Island area and would know of endocrinologist(s),holistic/alternative medicinal MD's that you can recommend to me?

I apologize for sounding so "woe as me" and hypocondriac like...but I just haven't been able to get any answers from these so called endocrinologist(s) & I hope that someone can help me out here.

Thanks you for listening and for nay of your replies in advance.

5 Responses
176557 tn?1222893911
I can offer you some info on Graves Disease (I was diagnosed a little over 2 years ago).  Graves Disease is an autoimmune disease where the body suddenly starts producing anti-bodies that attack they thyroid gland, causing it to over-produce thyroid hormones.  The cause is unknown, but stress and genetics are often listed as possible contributors.  Graves Disease is NOT cancer.

There are 3 standart treatments for Graves - anti-thyroid drugs (methimazole and PTU), RAI and Thyroidectomy.  You can never be technically "cured" for Graves, but some very lucky people achieve remission from the symptoms after taking the drugs for a year to eighteen months.  The percentage who get to remission is small, and often, the disease recurs.  I was treated with Methimazole for a little over a year, and took Toprol (a beta blocker) for about 3 months, and then chose thyroidectomy to permanently treat my hyperthyroidism.  I also have Graves Eye disease (related, but caused by a different set of antibodies, about 5% of those with Graves disease also have the eye problems).  Because of that, I chose not to try RAI since there is some thought that RAI makes the eye problems worse.

Yes, RAI and thyroidectomy are likely to cause you to be hypothyroid which will necessitate taking Synthroid every day of your life.  However, if you can get your thyroide hormone levels regulated, you can live a normal, active life.  I do step aerobics, ride many miles weekly on my bike and play golf regularly.  I was fortunate compared to some on this forum that my levels regulated pretty quickly, so I didn't have much in the way of hypothyroid symptoms.  

Methimazole has two potential serious side effects - liver problems and a problem with the ability to fight off infections, although these side effects are not terribly common, they are potentially serious if they do develop.  I think that is why treatment is only tried for a year or so, to lessen the likelihood of side effects.  Personally, I felt much different (better) after I was able to stop the methimazole.  I didn't find it troublesome, but do think it caused me to be emotional and stressed more than I would have been without.

Sorry you are having so much trouble finding an endo.  Good luck in your search, but I would urge you to find a good endo that you are comfortable with - they do exist (guess I lucked out and found two, the second one after I moved to a new city).  Graves is not something you want to let go untreated long term as hyperhyroidism causes heart problems when not treated.  Hope you feel better.
Avatar universal
I personally think all your doctors are quacks.  (sorry!)

I am just going to answer a few of your concerns.

There is no long term side effect from RAI.

You can successfully have children once levels are normal and stable which could be anywhere between 6 to 12 months after RAI.  I know of a women who had 6 beautiful, healthy children after her RAI.
Normally you will have to take thyroid hormone replacement pills the rest of your life.  The longer you wait for RAI treatment more chance this becomes.  I knew of a women who was not on meds yet 5 years after her RAI. However, waiting too long for treatment I would tend to believe that you have missed this chance.

Hyper's loose muscle mass too.  Its just not solely a hypo thing.  The longer you wait for treatment the more chance of this happening.

As tm514 expressed, you need treatment as soon as possible.  Eons ago before there was a treatment, 50% of Graves' patients died.  Don't mean to scare you, just to inform you how important treatment is. Considering this, one little pill the rest of our lives is nothing.

Find yourself a good Endo who deals with many thyroid patients per year, this is important because most deal with diabetes.

Good Luck!

Avatar universal
Well, I went to the internist that I spoke about in my post above and found out that I may have to get this RAI. And GravesLady....I was only diagnosis with Graves last month, have I already done damage to myself already...believe you me I am already scared straight by folks who have had RAI and they keep telling me find and endo that is willing to work with you and not boss you or twist your arm into having RAI done so gosh darn fast.
I have read numerous amounst of lietrature which tells me having RAI doen so fast is not ALWAYS the best option. I spoke with 20 folks who had RAI and maybe 3 of them have told me they feel loads better but they also told me taking Synthroid for the rest of their life is not helping them feel any better but they take it becaus ethier endo's said so, cause what endo's say are the ten commandments and they should be followed no matter what. And I have read numerous countless stoires on folks who have treated Graves with holistic methods and a very strict diet and they not only corrected their eye disease that comes with the graves but the hyperthyroid symptoms too. but I as a patient am not allowe to voice my opinion or the inofrmation I have read over the internet because the internet poisons one's mind on other open possibilities out there other than that RAI which is almost dangerous as taking  PTU and methimazole medications right?

I went to my hospital's medicinal clinic since I have no health insurance and was told after I have a full physical exam that then I would have to be referred to the "ENDOCRINE" teaching clinc, the appt they gave me was Nov 1, 2007 that a full 2 and half months away. The internist told me to take Metoproplol Tartrate (beta blocker) 3 X a day until I get to my appt date and that should hold me off on my symptoms till then. I have nver met so many *** backwars endo's or internist in the span of a one monthat that I have been vigrously looking to have this hyperthyroid (graves disease) problem taken care of and SOON. But not one doctor has been able to giv eme an appt or medication as of yet to help me with my symptoms other than a beta blocker to curb my heart palpitations. Not one doctor as of yet has been clearly been able to tell me what the side effects of RAI or RAI uptake scans can be? Four of my girlfriends thought they were being so smart by having RAI done and they did thinking the problem was to be solved pure and simple and poff 2 wnet on Symthorid and ended up even more extremely sickand low with energy and the other 2 took Armour or something a different verison of Synthorid I guess, but they all ended up with a miscarriage each after waiting a year of having their RAI done.

Now if that ain't proof of what damage RAI can do I am not sure what is. But i am still leaving RAI option open but I am not linger on a deceision I want to have it done but I would like to know what it is like to live off of of thyroid meds now instead of having RAI, just to test myself and see how far I can go? Numerous folks and one or two doctors in the hospital clinic I spoke to said that you can live safely and successfully off of PTU or Methimazole but under close monitoring.

I know how important treatment is but I was diagnosis in July 2007 (hello last month, haven't had a milisecond to digest this graves disease information everyoneis so busy scaring me out of my skull) and now I am gunning so hard to find an endocrinologist outside of the endocrine clinic that can  possibly see me sooner than Oct 4, 2007 because my body is letting me know I can't live on beta blockers alone and I can't wait a month and half to see these so called endo's in the endocrine teaching hospital clinic but I am going do my best to still see these almighty doctors at the endocrine clinic because I have no health insurance and spending another 500 dollars and another $500 dollars and so on and so forth on a consult fee only to have another endocrinologist outside of the clinic to force me to have RAI done is getting a bit tiresome of not only my savings but I can't work and my symptoms won't allow me to be able to keep a steady job.

On top of all this hyperthyroid junk, I already have TMJ (temporal mandibular joint disorder; laymoans terms severe jaw arthritis) which also causes migraines and latley I am not sure if my thyroid is causing my migraines or if my TMJ is causing them.

Oh and by the way GravesLady you mentioned that these thyroid meds are very bad to take but wouldn't I have to take them anyway if I have to get an radioactive uptake scan done or take them even more down should I deceide to get the RAI treatment done anyway to meloow out the normal range of mine, I mean at some point I am going to have to encounter these meds in some way and I was also told that they ween you off of them after 3 to 4 months provided I go into remission no one is even allowing me to count on a positive outcome like that too...why?

GravesLady by any chance are you from the Long Island NY area would you or anyone else here be able to recommend an endocrinologist that will listen to their patients instead of making them 2 feet tall for asking questions and not have suuch a massive ego or chip on their shoulder and not scold the patien with arming themselves with info on how to deal with the pro's and con's of Graves disease? I know and realize, I am not the queen of sheba and  I am not the only one with Graves disease I get that I do, but I haven't been able to digest what this is and honestly if I take these beta blockers 3 X a day would it be better for me to buy time with those till my appt with the endocrine teaching hospital's  appt which was Oct 4, 2007 for me, I am already taking 2 beta blockers a day form teh last endo that told me it is imeprative I take those  until i can see an endo who can precsribe me the right dosage and rigfht meds, how much damage am I doing to myself, being scracred out of my skull left and right and don't get me wrong my family are tired of seeing me scraed and helpless and not getting any answers is making me feel more stressed out hence me being on here. Will a month and a half kill me if I can't find and endo that can give me an appt sooner that the clinic appt, all these endo's that i have called from the yellowpages keep giving me appt's all the way in the month of Feb 2008, what do I do then?

again thank you for listening to me.... and thank you for the info in advance.

Avatar universal
You are sooooooo misinformed!!!  Sooooooo much negitativity!!! Sounds like you have already made your mind up.  So, what I say would not make a difference and would be a waist of time for the both of us.  Make a search of Graves' Disease and RAI (MSN), you will find people there doing or scheduled for or have done RAI, with positive out comes.

You have a big discussion in front of you, with many obstacles interfering.

Good Luck!
Avatar universal
RAI saved and gave me back a quality of life, Graves can kill you, flat out, it can cause a thyroid storm. I know many who's had this 10 to twenty years ago. We are all thankful, and no ne has suffered bad side effects. yes hypo can really stink, but not as bad as Graves disease. It's hard to understand about your doctors, I can tell you my whole charge for RAI treatment was 159.00, less than a few months prescriptions. Yes I am on synthroid, I take it with my morning coffee like clockwork. I feel very fortunate that RAI was offered to me, surgery is als anothe roption, but as of right now I'm glad I chose RAI. No you don't take anti-thyroid meds after RAI 131 treatment, maybe for a short time, but not for lifetime. I understand you are scared, we've been there too. BUT inform yourself from legitimate sites , and people who've been through this, also your TMJ could actually disappear with proper treatment of Graves, when I'm hyper or on too much synthroid my jaws will ache.
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