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Thyroid Cancer / Nodules & Hyperthyroidism Forum
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Avatar universal

Just Diagnosed - RAI and Stress!?

I was diagnosed with hyperthyroid and most likely Graves yesterday. My TSH was 0.1, T4 was 19.4 (normal 4.5-12) and T3 was unmeasurable - over 2000 (normal was 230-420). (Still fuzzy on what these even are!!) My main symptoms were extreme shortness of breath with physical exercise and racing heart and daily diarrhea (lovely). I have no family history so this was likely brought on by stress. Looking back, this probably started about 5 months ago? I have a million questions, but the two that are at the forefront now are:

1)Is RAI as dangerous as I have been reading?? My GP made it sound like a quick fix and is sending me to an endocrinologist on Monday to discuss it. I've only been seeing negative posts - does ANYONE recommend it?? I live in Colorado in the States - any suggestions on Drs here?

2)If my stress level is such that it can cause something like this, has anyone found stress-reduction techniques that WORK?! Finding out that I have this has raised my stress level above what it was!!! I'm snapping at people at work and at my parents who are trying to help me. At least now I have something to blame it on!?

Finally, thanks for this - I started reading it last night trying to get info on what's going on with my body and kept hearing myself in other's words. Could be worse, right?!
18 Responses
97953 tn?1440868992
MEDICAL PROFESSIONAL
Stress reduction can be helpful as stress can aggravate hyperthyroidism.  Read the below - it should help you make decisions about RAI vs other treatments.

There are three ways to treat hyperthyroidism - PTU/Tapazole (anti-thyroid drugs (ATDs)), I-131 treatment (RAI) and surgery.  

Usually surgery is a last resort for Graves Disease but is sometimes suggested with over-functioning nodules or with hyperthyroidism in the setting of suspicious nodules.

If you have an over-active (toxic) thyroid nodule, the RAI is preferred over ATDs b/c the ATDs will only work while you are taking them and once stopped you will become hyper-thyroid again due to the toxic nodule.  The problem with long-term ATDs is the potential side effects of liver damage, vasculitis and immune system suppression.  RAI treatment for an over active nodule directs the radiation to the problem area and decreases the size and function of the nodule(s). The probability of permanent hypothyroidism in this case is roughly 25% depending on the situation -- but I tell patients to expect to become hypo and then if they don't need lifelong thyroid hormone treatment, that's great.

Graves disease can initially be treated with either ATDs or RAI.  Graves disease is hyperthyroidism due to an immune system attack stimulating the thyroid to make excessive thyroid hormone.  ATDs can be used for 12-18 months and the dose titrated to keep the T4 and T3 in the normal range.  Then, if the patient is on a low ATD dose and has normal levels) the medication is stopped  - at that point up to 30-50% of patients may stay in remission (ie normal thyroid levels for at least one year).  The rate of remission depends on the severity of the hyperthyroidism, the levels of TSH-receptor Antibodies, size of the thyroid and a few other issues (perhaps including smoking status - Graves patients are at particularly high risk if they smoke).  

RAI can be used either as the initial treatment of after a trial of ATDs have failed to achieve control or remission.  RAI is a single pill taken one time -- it cures Graves Disease 85% of the time after one dose and has very few side effects.  The most important side effect is permanent hypothyroidism requiring a daily dose of thyroid hormone replacement for the rest of your life.  This is a much easier situation to control however than using ATDs for hyperthyroidism - and without the toxicity to the immune system, liver, and other organ systems that we sometimes encounter with ATDs.  There is no increased risk of cancer in Graves patients treated with RAI vs other treatments.  There may be some mild nausea or heartburn, but this is transient.  In rare cases (< 1%) there may be a painful inflammation of the thyroid after RAI which is sometimes associated with severe hyperthyroidism -- this is transient and can be treated medically.  WOMEN WHO MAY BE PREGNANT MAY NOT TAKE RAI AND WOMEN SHOULD NOT BECOME PREGNANT FOR 6 MONTHS AFTER RAI.

An important issue to consider with Graves and RAI is EYE disease.  If there is any evidence of Graves eye disease (double vision, eye-aching, swelling, tearing, dryness, inflammation, "bug eyed look", etc) then steroids need to be used in conjunction with the RAI to avoid an increse in the eye disease -- RAI when used in this way is an excellent way to treat the graves hyperthyroidism and the graves eye disease.  If there is severe eye disease - this must be aggressively controlled before RAI is considered.  SMOKING significantly increases the risk of eye disease.

In summary, RAI works very well in most patients - if after 6 months the T4/T3 levels are still high then the dose may need to be repeated.  The hypothyroidism after RAI may occur as soon as 6 weeks - therefore I recommend testing T4 and T3 levels every 6 weeks after RAI to document a trend and intervene early if hypothyroidism develops.  The TSH level may take several months to normalize and initially is NOT a reliable way to follow treatment of hyperthyroidism.

The question of weight usually comes up about now -- hyperthyroidism falsely elevates metabolic rate so a patient sometimes can eat a significant amount and still lose weight.  Once the hyperthyroidism is corrected the metabolic rate (ie, daily calorie burn at rest) goes back to what it should be for you (as we all know, this rate does not seem to be created equal from person to person!).  Therefore it is essential to decrease calorie intake as you are treated and a 10-20 pound weight gain is sometimes encountered -- no matter how the hyperthyroidism is treated.
Avatar universal
I have noticed that RAI is quickly recommended here in the US, yet I understand that in Europe, they first use anti-thyroid drugs--the latter which seems so much wiser than radiating the thyroid, to me! Did you do the antibodies test? You might want to become familiar with the website by the "atomic women": http://www.geocities.com/ibayoa/  They really spell out the reality of RAI. There are also lots of women in a thyroid group I belong to who REGRET they did RAI!! I sure do think you are very wise to question it!!


Avatar universal
I'm coming into this thread a bit late, but I would totally recommend against RAI unless you have tried the ATDs for a good long period of time. I had RAI 3+ years ago, and regret it! My endo gave me 2 options, RAI or surgery, and like a good little mindless automaton, I followed his advice. I became severely hypO after that, and it has taken me 3 years and 3 doctors before I found one who will help me get well. My endo told me that none of my continuing complaints were related to thyroid (sudden weight gain - 50 lb in 3 months, brain fog, inability to concentrate, extreme fatigue). He dosed exclusively by labs and really didn't give a flying fig how I FELT!

I did not have the thyroid eye disease (TED) but I have seen/read that RAI will make that worse. I believe Dr. Mark has mentioned that here, too.

The best "advice" I can give you is to research it as much as you can, and don't let yourself be pushed into a choice you really don't want to make. Also, ask your doctor to test for antibodies if that hasn't already been done - you may have Hashimoto's disease, not Graves, and the treatments are very different.
Avatar universal
I just replied to your question above - I read it yesterday, but really didn't have time to reply.

Just curious, is this the only forum you belong to? I personally belong to six other forums - LOTS more information than just here, and I want to learn as much as I possibly can, including alternative treatments. Unfortunately, every time I see my doctor, I feel that I have to be "armed" with information, guess that's just how it goes. It seems to me that thyroid disease is running rampant and is either untreated or undertreated in most cases. And the number of symptoms that are/can be related to thyroid is staggering! My theory, and it is just that, is that we have poisoned our environment for years, to the point that thyroids and adrenals have been damaged. There's more to it than that, but I'll get off my soapbox now!

I have read excerpts from a book called Hypothyroidism Type 2, by a Dr. Mark Starr - he cites studies from the early 1900's that have been largely ignored in modern medicine. It sounds very interesting, so I have just ordered it from Amazon - can't wait until it gets here!
Avatar universal
I totally agree that there are very uninformed Dr.s out there and this is not pointed out at times, to make us patients look more knowledgable(who cares about that)but I think that is how others who work in the medical field as nurses etc..., tend to take it.
I wish they could understand that by warning others, that there is such a thing as Dr.s who aren't very qualified to diagnose or treat thyroid & other disease, this is not for the purpose of degrading the medical community as a whole or to "tout" our own limited knowledge. The purpose(as I know it is for you too), is to help these unfortunate people, to be able to spot bad medical practice, when it does happen, so that they can look for better treatment and not suffer. People who are very ill, tend to get discouraged and very depressed, when they can sense a Dr. is not taking time or effort to help them, especially when it happens to them with several consecutive Dr.s in a row(my experience).
I can give so many examples I have personally witnessed, family and friends who suffered years needlessly, some passed away, others close to death, that were preventable, simply by getting proper medical treatment.
With all that said, I always like to end positive, by saying that there are many honorable, compassionate, careing Dr.s, giving quality treatment. My mother has a Dr., worth his weight in gold (plutonium!)! If we don't relate both the positive and negative facts, simply to keep from offending someone associated with the medical field, we do a tremendous dis-service to suffering patients.
I know you agree with much of this Ancientmariner and certainly wasn't directed at you! I'm actually echoing your comments, by adding a few more. I love to uplift, glorify, compliment, good medical treatment and the Dr.s behind such, so hope that is understood, when we say these things.
I'm a member of four other forums but read on a number of others, been on this one since June-last year. I'm certainly not against patients supporting eachother, especially in a balanced way, not going to extremes.
I was bitter for a short time last year, took it out on Dr. Mark/Med-Help and regret that but sincerely repented. I saw so many things last year, a friend age-42 died of congestive heart failure but Dr.s instead of treating, called it anxiety and prescribed antidepressants. My mother awoke from anethesia during an operation, screaming "stop, I'm awake",(but did get an opology). An Aunt, an Uncle and a bro-in-law, all three were given wrong medications for different illness, two almost died. My wife was given a prescription to take "10 doses" of Diflucan, a powerful anti-fungal and a concerned pharmacist warned DO NOT TAKE THAT MANY DOSES, it can result in permanentliver/kidney and other permanent damage. "TNT", a young lady on this forum, suffered a severe stroke last year, due to Dr.s telling her symptoms were in her head (I hope she is still alive today). I could go on, and on but need to stop there. The point being, it is very hard for these things not to seriously affect your opinions and when you detect this same "passiveness" in regard to people's lives & health in other medical people, it is VERY HARD not to react to it.
Dr.s and other medical, have EXTREMELY difficult jobs but this is also why I believe it should be a "calling" and not a carreer move and the priority should be healing for those human lives, people made in the image of God, who have family who terribly need and love them. I believe with all my heart that those who lost those priorities about people lives, will be judged, while all those many wonderful Dr.s out there, will be rewarded for their sincere care of human lives.
No one is perfect, we're all fallable but purposeful, blatant disrespect in care for others, is inexcusable. God Bless the good Medical Professionals, of which there are many!!
  
Avatar universal
I understand your misunderstanding about what was said in one of my prior posts. Mostly because I addressed it incorrectly to Armour Advocates. Hashiman (Jim Lo) you are the person I most looked up to when I first got on this site prior to Dr Mark signing on. You don't know how much I appreciated this forum & pt's being able to ask questions talk to each other. I was reading this web site when TNT was partcipating (and yes I beleive she is still alive I recently seen one of her posts on another forum in Med Help). Ancient Mariner I also wrote you  responding to your post on that message below. I don't know if you read it or not but basically I said that the comments were not meant for you & I apologized for using the heading Armour Advocates...because that was disrespectful toward you anyone advocating Armour & put you on your guard right away. I have never seen you be anything but compassionate toward others. I was remarking on a comment above mine made by Chocobabe that quoted Dr Mark's answer to the participant & was blatantly disrespectful toward him. I also voiced concern with some advocating self dosing perscription medications. Which in my opinion is reckless & inexcusable on a public forum. I just ask that anyone doing that stop & not only think about what they are saying but who they may be talking to. The fact was brought up that Dr Mark does not know who or what age or medical conditions or medications a certain pt.is on. But Dr Mark does state "if otherwise healthy" within his response most of the time. Maybe it's the medical person in me but it's just the way I feel. I am in no way down grading anyone's knowledge or experiences. I find all your knowledge mind boggling. To know how much research many of you have done. That was the point trying to be made anyway. No matter what our professions are,we need to treat others as we would want to be treated with dignity & compassion.
And from a post RAI pt....I agree with both of you I would exhaust all hyperthyroid medications before sujecting myself to RAI & it's sideeffects. It certainly isn't the easy way out or the miracle cure...God Bless
Avatar universal
Don't worry - I don't offend easily, and if I am offended, I'll let you know! LOL! I think I may have already done that once or twice.

Anyway, I agree with you on the RAI - I think a lot of doctors are too quick to push it on us - I know my endo was. I have antibodies for Hashi's, but he never tested them. Who knows, if I had stayed on the ATDs longer, I may have been fine. That happened to my grandmother at about the same age, way back in the 1940's - she went hyper, they gave her meds to take "as needed", and eventually she didn't need them any more. Years later, she went hypo. That probably would have happened to me, but there's no way of knowing now. I just wish I had started researching BEFORE I agreed to RAI, not after.

It probably is not a good thing to advocate self-treatment, but if I felt it were my only option, I am sure I would try it. For me, Synthroid/Levoxyl were not the answer, but Armour seems to be. And I would do whatever it took to get Armour and to feel well again.

Avatar universal
I meant to say antiboties instead of auto-antibodies.  Sorry!
Avatar universal
Thanks so much for your quick response. I'll try that web site........ Jean
Avatar universal
I am post RAI (02/05) by May I already showed significant signs of TED. One quick question for you & I hope Dr. responds if he reads this. I am told that I will always be considered to have graves disease even if it is in remission. In your research, is it any benefit to monitor auto-antibodies to document the progression or cessation of an attack of TED after RAI. The reason I'm asking this is, I have never had auto-antibodies even pre-RAI, but my opthmologist is sending me to an ocular plastic surgeon for a consult due increased eye pressure & worsening symptoms. He will be concerned whether this is still progressing prior to any treatment surgically. Would the auto- antibioties reflect that.
Maybe this is a stupid question but I have just been wondering. Thanks in advance for your answer.       God Bless!
Avatar universal
Yes, it will be of help to you to test your auto-antibodies and monitor your progress. There are several people on another board who have TED and have done alot more extensive research into that paticular area than I have. Go to:

http://www.mediboard.com/groupee

There are people who have had the surgery you are talking about with success. One girl, her ID screen name is: hiroshima, has posted her story too. You can search the archives, or go straight to the bold threads at the top of the page. There is much there that can help you. You can just read the posts or register free to be a member and make comments, or ask questions or just get support. If you register, I know hiroshima will talk to you and help you out with any questions you may have too.

Also, yes there is no known cure for Graves Disease. Yes you can go into remission. That is no auto-antibodies found. It is a disease of management.

I hope this helps.
lil deb
Avatar universal
Doctor,

I highly respect what you are doing here. Most doctors would not even take the time. But on this post, I agree, most doctors would reccomment RAI as a 1st or 2nd choice. But with all the recent studies, many thyroid patients are becoming more and more aware of the dangers of RAI and have chosen ATD as a long term treatment.

I am sorry to correct an error your have made stating that ATD's can only be taken for 12-18 months. This information is like this because no one has ever done any studies on ATD use for more than 18 months. I think I found 1 one time that stated 2 years with success. Many Many people successfully take ATD's for years without problems now. I personally know someone who has taken ATD's for 25 years. The possible liver damage is a very rare occurance and should be monitored and a base liver level taken prior to the start of ATD's.

Now to address the immune suppression regarding ATD's...When a person has Graves Disease. That is exactly what they need to do. Graves Disease is an auto-immune disease. The immune system is attacking the body. Though ATD's is not the answer to immune suppression, it does help.

People with autoimmune Graves Disease or Hashimotos need to have their auto-antibodies tested and monitored also. As the goal of the patient would be to reach remmission. The removal of the thyroid or the killing-off of the thyroid does not cure Graves Disease. The auto-antibodies are still there and can and many times does go straight to the eyes causing TED or the skin causing pretibial myxedema.

If a person has Graves Disease and is given RAI, it can become extrememly dangerous for the patient. Not only the radioactivity being absorbed by other parts of the body, and the cancer risks associated, but as the thyroid cells slowly die off the cells release the stored auto-antibodies in the body and many times people develop Thyroid eye disease shortly after the treatment of RAI.

If a person has been given ATD's and for some reason is not able to continue such as with liver problems. Surgery to remove the thyroid or a portion of it, should always be the second choice of treatment. The number 1 reason being that these stored auto-antibodies are removed along with the thyroid. Also, you have no radiation risks. The risks associated with surgery is a 1% chance of the vocal cord nerve being damaged, which becomes null with a good experianced surgeon. Also, there is a risk of parathyroid damage, but I am sure you know that most of the time these are placed right back in the neck and can work again. If not, the person would have to take calcium. Plus, you have your usual anestesia risks.

Another problem with RAI is that if a person has given it their best shot with proper lab testing, monitoring and doses of medication, and the levels keep swinging and will not become stable. There is a possibility a person can have thyroid cancer. If the cancer is deep in the thyroid, it may not show up on the thyroid scans. With RAI, a person would not know that they had cancer, and it could spread. With surgery, the thyroid specimin would be checked and the cancer found.

I am a firm believer that ATD's and a chance for remmision  should always be given the 1st shot as treatment. Surgery 2nd, and RAI - given only in life or death situations where surgery could not be tolerated. With lifestyle changes, remission is possible. I am an example of that, I have no Graves auto-antibodies anymore, but I still have a multi-nodular goiter and am euthyroid and no longer am taking PTU. I am a patient who has done extensive research on this subject. I have learned that the understanding the endocrine feedback loop is crucial to success and managment of this disease. I say managment, because I manage my disease, no different than people manage diabetes.

There is much more that can be said on this subject, but please do a little more research, and I don't mean that disrecpectfully. You will see what I am saying is correct. I know RAI is a cheaper way to remove the thyroid, but the costs afterward are many times more costly, due to damage caused by the radioactivity.

I do have to say I was SO pleased to see that you reccommended the Free thyroid levels as many doctors don't realize the estrogens interfer with the Total Thyroid lab testing and still monitor with only the Free T4 and the Total T3. or only TSH.

Thank you for your time.
lildeb

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