Can Hyperthyroid Patients Avoid Radioactive Iodine (RAI)
Thursday July 24, 2008
I had a chance to chat briefly with Dr. Richard Shames regarding his thoughts about thyroid patients faced with radioactive iodine (RAI) treatment for their Graves' disease/hyperthyroidism. Dr. Shames is the co-author of several books on thyroid disease -- including ThyroidPower and Fat, Fuzzy and Frazzled -- and contributed his "Shames Natural Antithyroid Protocol" to my book Living Well With Graves' Disease and Hyperthyroidism. In the US, many patients who are hyperthyroid -- including those with even mild hyperthyroidism -- are immediately offered radioactive iodine treatment. But, says Dr. Shames, for some who are not in an acute stage of hyperthyroidism, RAI may be premature.
"It's still somewhat of a shock to me how many hyperthyroid patients are told that their only real option is RAI and they must do it right away, to be followed by being on Synthroid forever after," says Dr. Shames. "This is disturbing to me because I've seen so many people do really well with one or another of the wide range of alternatives to this standard procedure."I asked him why he thinks endocrinologists so often push for RAI ablation right away? Says Dr. Shames:
A diplomatic answer might be that they sincerely feel that other choices have yet to be proven as safe and effective. My personal hunch is that many are simply following this nationwide "standard of care" that would best protect them from future hassles or even malpractice claims. But also RAI is quicker, easier, and much more cost-effective (for the doctor). Medical doctors can charge insurance companies much more for procedures than for educational office visits or writing prescriptions. Also, in today's busy endocrinology practice, it would take an inordinate amount of time to properly educate patients about all their options, and to help each patient decide which might be right for them.Given the shortage of endocrinologists, and the brief amount of time a patient may have during an appointment, (sometimes as little as five minutes), I wondered how patients can get their doctors to stop and consider alternatives, versus the standard "rush to RAI." According to Dr. Shames:
Whether it's my patient in front of me or I'm coaching someone on the phone, I tell them here's a way that you can avoid or postpone RAI while getting the help you need from your doctor. Remember that endocrinologists as a group are heavily overburdened, often with very ill diabetes patients. Thus, they are generally very busy, straightforward, and have low tolerance for what they consider "nonsense." Therefore, your job is to be short, sweet, and logical. This means saying, perhaps over and over, that you are certainly willing to do the "right thing" (which in their minds is RAI), BUT right now you just want to try the antithyroid drugs Tapazole or PTU first.According to Dr. Shames, patients should stay away from trying to educate a busy endocrinologist about the possible benefits of an integrative approach to hyperthyroidism -- combining antithyroid medications with more holistic approaches such as acupuncture, homeopathy, specific anti-thyroid supplements, improved nutrition, mind-body techniques, and other useful alternative therapies.
In fact, Dr. Shames has a script for patients who may wish to pursue an integrative approach, but need to continue working with their endocrinologist. Says Dr. Shames:
You can say: "Doctor, I hear you loud and clear. But before actually doing the radioactive iodine, what I need to do for myself right now is a short course of antithyroid drugs and beta blockers, and see how I respond." Remember, when saying this, be thoughtful and definite. Look him or her right in the eye.Ultimately, according to Dr. Shames, you are looking for the time and tools to best initiate a successful, long-term program. And, according to Dr. Shames, this means:You might also want to have written up ahead of time a note that you present to your doctor. Have it signed, dated, and witnessed, and keep it hidden until needed, if at all. Here's what the note should say:
This note is to certify that I have been well-advised to now initiate treatment of my hyperthyroidism with radioactive iodine. With full knowledge of my own situation, it is my very best decision to first try Tapazole or PTU. The pros and cons of this decision are known to me. I agree to hold Dr. _________ and his/her practice harmless regarding any adverse outcome of trying the conservative therapy first, before moving on to the more definitive procedure.
Says Dr. Shames:"As the patient feels better and as the tests improve, the monitoring doctor can feel comfortable continuing the conservative treatment."
- Having your doctor become a supportive physician who "postpones" the RAI, writes prescriptions for you when necessary, monitors your progress with history, physical exams, and blood testing.
- Meanwhile, in addition to using low dose antithyroid drugs and possible beta blockers as needed, you can be pursuing on your own a well-chosen mix of alternative therapies.
- After time, you may no longer need beta-blockers for comfort.
- As your alternative program helps you to improve, your program may allow your antithyroid drug dosage to be gradually reduced and eventually eliminated.
- Some patients are able to maintain normal thyroid status using just the alternatives.
Richard Shames, MD graduated Harvard and University of Pennsylvania, did research at the National Institutes of Health with Nobel Prize winner Marshall Nirenberg, and has been in private practice for more than twenty five years. Dr. Shames practices holistic medicine -- with a focus on thyroid, autoimmune and hormonal balance issues. He is in practice in California, and also offers second-opinion telephone coaching services.
Photo © Dr. Richard Shames
Comments
I am a Hyperthroid patient survivor and I was severe. My MD sent me to a Endo doc to confirm his blood tests and diagnosis that I had Graves disease. Immediatly the Endo Dr. wanted to give me RAI no options and was trying to schedule an appt for procedure. I went back to my MD explained that I didn’t want such drastic measures so fast so he studied and acted like Trump and said she was FIRED. I laughed but was relieved and put on Beta blockers and PTU for 3-years ( I had a reaction to Trapazol) AND I AM IN REMISSION ONE YEAR NOW. The other leg of my stool my sexual hormones are a little out of wack but I am working on a balance for that too and reading Dr. Shanes book Fat Fuzzy and Frazzled.
My suggestion do your homework and get with a doctor that you can talk to.
Thanks Vivian
I agree, you should avoid RAI if possible. I had it presented as my only choice 10 years ago, and am just starting to feel “normal” again. My
synthroid dose changes about every 5-6 months, it feels like an ongoing rollercoaster! Just say NO.
I was diagnosed with graves when I was 12. I took PTU for a couple of years because my Mom refused to let them give me RAI (as her Mom did also). I was in remission until I was 27. Then tried chinese meds and they made it less hyper, but not enough, so I eventually gave in to pressure from the endo and my MD to have the RAI at 29. Have been on synthroid for years and also take cytomel several times a day.
What sucks the most is that the big pharma likes to create shortages of cytomel! I hate being dependant on them. So I would urge you to exhaust all your alternatives before taking RAI
Hello….I was diagnosed w/Graves Disease 1 year ago (also with multiple nodules in my thyroid gland but not yet large enough to biopsy). At the time of the diagnosis I was also on a beta blocker for premature ventricular contractions and a diuretic for edema in my feet and ankles. I found a great endocrinologist in Columbus, OH who was willing to try the European standard of care by prescribing Tapazole….today I am off the beta blocker and diuretic and am maintained on just 5 mg of Tapazole daily….I am hoping in the next year to be in remission. My thyroid nodules have not changed in size. I like this method because the minute my blood work is off I start having PVC’s and I just up my Tapazole….where with Synthroid I don’t think it would be as clear. Thx.
I have a wonderful endocrinologist who was very patient with me before RAI treatment. I was diagnosed while pregnant, and put on PTU. I was on it for quite a while, and my Graves went into remission until about 6 months after having my daughter. Then my Graves came back with a vengeance and I was back on PTU. But my doc was very patient since I was nursing and did so for 2 years.
But I did get to the point where I wanted to get off the PTU and then I went for the RAI treatment. Even then it took 18 months to get my meds stabilized and I went from Synthroid to Levoxyl which works much better for me.
I avoided RAI so far by searching online and eventually going outside of the US (Europe) for an alternative outpatient treatment (not approved by FDA). I’ve been in remission 2 years. Do your homework.
I have Graves Disease and was on block and replace treatment (methimazole and levoxyl)5 years. After one year, I tried getting off the meds without success. My endocrinologist recommended RAI. I didn’t want that, so he agreed to let me continue with medication, which I did 4 more years before weaning myself off all medication. I have been in remission now 3 1/2 years and feel great. I used to get a blood test about every 8 weeks to adjust my meds. Now I get one once a year just to be sure things are okay.
For many people, the conservative approach to using antithyroid meds can take a very long time to get the antibodies under control before being able to wean of the ATDs. Everybody is different in terms how severe the antibodies are and to aim for remission.
I have been on ATDs for over five years now and am on a very teensy weensy doses. I like very much to be able to try them rather than being forced into taking an RAI right away. Fortunately the Endo I see has a number of his patients who’ve been on ATDs more than 10+ years.
My levels were so high that the lab test couldn’t even chart them. The first thing the doctor said was go have your thyroid killed with iodine. I looked her straight in the eyes and said, no. I headed straight to my acupuncturist and that is how I treated the Graves and thyrotoxicosis. Today my levels are normal and not one dose of western drug therapy entered my system.
I was diagnosed with Graves and Hyperthyroidism about 8 years ago and the first endo I saw scheduled me an appointment for the RAI on a Momday. I spent the weekend researching the RAI and decided that was too drastic for me so I cancelled it and saw another endo. I was not having any symptoms so he agreed to just watch me over the years. I have done nothing but see him yearly and I had a bone density test which was normal. On my last visit my bloodwork was normal and he said if it was still normal next year he would release me. I think these doctors that want to kill your thyroid right off the bat should be ashamed of themselves.
I was diagnosed five years ago with Graves disease, and like so many, RAI treatment was recommended. However, being in the medical field, I was very reluctant to make that my first option. I completely changed my eating habits, removed sugar and processed foods from my diet, continued with my pretty intense work-out schedule (I am a personal fitness trainer). My endocrinologist was very willing to try alternative measures and Tapazole. I am considered to be in remission, taking only 2.5 mg of Tapazole a week…feel great, weight stable, plenty of energy and muscle strength to teach six classes a week…and I am 50! For me, alternative treatment has been wonderful and I will continue as is…..living strong and healthy with Graves Disease!
I was diagnosed with Graves Disease 5 years ago. At the time, I was extremely unwell and needed four months off work to recover. Despite my drastically high levels of thyroid hormones, my specialist advised against RAI. I was put onto carbimazole, but had an allergic reaction so switched to PTU and betablockers. To cut a very long story short, after several years of drug therapy as well as naturopathic support and energy work I achieved normal blood tests and have been in remission since then. My specialist does not feel that the alternative therapies have contributed to my current state of well-being, but was not opposed to me trying them. A wheat-free and dairy-free diet has also done wonders for my energy levels, and I lost several dress sizes. I’m now having blood tests every 6 months to monitor thyroid hormone levels, but if they rise again I’ll go back onto the naturopathic treatments first, before starting again on PTU. I do not want to undergo RAI, but am resigned to the fact that my thyroid may eventually burn itself out, so then I’ll take synthetic hormones. I live in Australia, and since being diagnosed have met many other women with Graves, all of whom had RAI, and none of whom are happy with how they are feeling now.
Glad to see an MD balking at RAI!! Thank you, Dr. Shames!
I’ve been taking Tapazole for almost 30 years now (couldn’t tolerate PTU). Was under constant pressure to “get it over with” via RAI, so kept changing doctors. Have been with a wonderful family doctor for over 7 years now. He lets me get the labs I need (FT4, FT3, TSH, yearly metabolic profile and proper antibody testing)), and is content with my continuing ATD treatment as a lifelong option if necessary (as they do in many other countries).
If you don’t achieve remission, there is no reason you can’t continue with a maintenance dose of ATD as long as needed. Those who require blood pressure meds aren’t yanked off them at some fabricated pre-determined time limit, so why should thyroid suppression meds be given a deadline?
Endos should wake up and ditch this RAI tunnel vision.
Thanks, Chris
I was very recently diagnosed with Graves disease (about three weeks ago). There are just so many horror stories on this and other sites that I just feel like I have to tell a story that shows that sometimes things work out better. First my doctor (a GP I have been seeing for 20 years and my wife for 30) diagnosed me in 3 days as hyperthyroid — basically the time it took to get the blood tests back. The only symptom I had were heart palpitations. He then diagnosed Graves two weeks later after the uptake test. That only took so long because I had to stop taking a vitamin supplement that had iodine in it before I could take the test.
He then presented me with my three treatment options — RAI, anti-thyroid drugs and surgery. He actually recommended that I NOT try RAI first because in his words, “there is no downside to trying the drugs first, they might work for you and once the RAI passes your lips, there is no turning back”. Who knows where my journey will end, but after taking Tapizol for less than 2 weeks, I already feel way better.
Maybe sometimes the family doctor that knows you best can support help support others with endos who are meeting you for the first time.
my thyroid level is 0.05..and approximately 8th week of pregnanacy is going on.But before my pregnancy me tsh level is 8.33.Am i considered as hypo or hyper thyroid.Will it effect my baby in any way.My dosage was reduced to half.Is it suggestable.I’m very much scared .please help me in this regard but giving me some suggestions.
I was the one who decided on RAI, yes there is no turning back but after being on clonazepam, PTU and beta blockers, I was tired of having my pulse go from 80 to 130 at rest, no reason, no bad thoughts. I got RAI 4 weeks ago and I am still hyper, not as much, but I would rather be hypo, I have trouble with tachycardia, than be flying all the time. Not to mention that PTU makes me hold water and feel crappy. I can not be on it for an extended period of time. Hoping that within 8 weeks, which would make me 12 weeks post RAI, I go hypo. I would rather crash and work up from there then have to try to work down when it didn’t seem to be working at all.
Hey Granny Chris. Good to see you. Are you still active on the yahoogroup? Might be a good place for Kamala to check out (graves_support@yahoogroups.com)
Dr. Shames, excellent article, and Mary, thanks for all the wonderful work you do for thyroid patients.
I had been hyperthyroid more than a year because my ENT didn’t notice my TSH .001 was flagged by the lab. He tested me for the right problem, just didn’t look too hard at the results, even flagged by the lab. I narrowly escaped the angioplasty the follow-up Cardio group recommended. My OPTHAL treating me for my horrible eye problems, got it right with one visit. My ENDO suggested I could try tapezol, but my liver enzymes were elevated by it. So, he said I should take the RAI. I had read and talked to too many people whose eye problems were horrible after RAI. (One was a woman who had taken RAI before going to work for the ENDO group at the Mayo Clinic.) Only AFTER I told my ENDO that I was worried about worse eye problems after RAI did he agree that it can make eye problems worse. Glad I asked! I had a fabulous surgeon for thyroidectomy. Immediately started Synthroid. After 6 months of grief, he switched me to Armour. The results were almost immediate. I’ve only had one dosage change in 5 years. No problems whatsoever. Many pharmacists have given me that line that Synthroid is better, same. It’s not for me. I’ll track down the naturals until there are none!
I had T3 and T4 abnormal (not much, mild), doc saying Hyper; did all the blood tests=all normal.
I started Tapazole, very bad side effects: hot flashes, skin issues, hair falling, etc.
Stopped and started methimazole, after 8 weeks my liver test and white cell are abnormal (from being normal before) and my levels of T3/T4 increased dramaticlly.
The doc: has no idea why this?
I stopped the medication, go for another opinion.
I was diagnosed with hyperthyroid at age 18. I was put on a course of meds for about a year and eventually was told that I had to have RAI. I have been on eltroxin since. I am now 42. I suffer from migranes (especially during period) and sometimes my thyroid levels swing dramatically to the point that I feel so fatigued, that I cant get out of bed – even though I have been on the same dosage for years. When I try to change the dose, the levels swing the other way – and the balance is again obtained at the dosage I was on before. What causes these sudden, occassional swings in the levels? Also are headaches linked to Thyroid and is there any remedy for it? Somebody suggested Beta-blockers, but I think they are contra indicated with Eltroxin.
Does anybody else experience this?
I found out that i have hyperthyroidism last
summer. Im 18 now and im taking 30mg of methimazole a day. my doctor gave me an
option on RAI; and ive been searching online
on pros & cons about it..but will it
be a good idea if i do it?
Endo docs are funny.They want RAI asap.I have been on tapazole a little over 1 yr.Reduced dosage from 30mg down to 5mg.When I told the doc(I lied) I was a back up session vocalist.Any talk of RAI and surgery stopped.I am partialy hypo normal and hyper.I was misdiagnosed as Bipolar and put on lithium years ago and was removed from the drug by a smart dr.(A shrink no less)who said i was not bipolar and it was my thyroid.
So after being on L 16 yrs I got a ft3 andft4
after I was weened off L.TSH is supressed by L and a correct diagnosis cannot be made untill you are L free.
Im still on tapazole.I sing like a screeching cat.No L.I feel good.Im off the beta blockers but need to lose weight.Going to ask the doc for dieuretic to help.All the best to all.
My endo immediately prescribed Methimazole and I started feeling better almost immediately. I peaked after about a month on the drug when a serious side effect took over (painful swollen joints and low grade fever). She didn’t want to take a chance with switching to PTU and neither do I. I will have RAI next week. My sister had a thyroidectomy 15 years ago and has been on synthroid and in very good health ever since. I say go with the protocol (drugs first) and then do whatever it takes to start leading a normal life. I’ll take hypo over hyper anyday.
Hi,
I am so glad that I have got a site that is helpful.
I have recently been told I have hyperthyroidism and on my first visit to the specialist, I was told I should consider RAI treatment.
I told her I didn’t want this and was told to think about it and they printed leaflets about the treatment.
I know that this has come about through stress over the years and I am changing this.
I am scared as the other sites have had very negative imput on the comments.
Thank you guys for the positive comments.