Should I do RAI?

[lalatata]

I was diagnosed hyperthyroidism in the last October (T3 is about 1000 (normal range is 230-420)). I first took Tapazole for 3 weeks and got rash, so had to stop taking this medicine. I started taking PTU from this March with a dosage of 150mg/day (it seems that the doctor suggested inappropriate dosage. I was supposed to take a larger dosage at the beginning, which I found from the info online later on). T3 and T4 got lower but insignificantly. Two months later, the dosage was increased to 250mg/day. About one and half months later, T3 and T4 decreased but were still above the normal range. So the dosage of 200 mg/day was kept for another two months and the T4 becomes normal and T3 is very close to the normal range. The doctor suggested (insisted actually) RAI treatment which I thought too strong and could bring a lot of side effects. And I believed the medicine worked for me since the condition was getting better. Lately I gained about 5 lbs so I decreased the dose to 100mg/day continuously without the doctor’s permission (I know I was wrong L). Now my T3 and T4 become abnormal again (T3 becomes 720). The worst thing is I feel pressure at the neck and have to eruct from time to time. But I didn’t see the obvious expansion of the thyroid gland. Is the situation becomes worse? Should I go back to the dosage of 200mg/day? Will the feeling of pressure be gone? Do I really need RAI treatment? Any suggestions will be highly appreciated. Thanks a lot.

[Mark Lupo, M.D.]

It is hard to say if RAI is best for you -- your initial levels were fairly high but you are responding to PTU (until you decreased the dose...ie, try at least 150 to 200mg / day -- this is usually divided into 2 to 3 doses per day) - if you have Graves then a 12-18 month trial of PTU may be reasonable as described below.  RAI works well and is the treatment of choice by the majority of US thyroid experts.

Here's some background on treatment for hyperthyroidism as well as pros/cons of various 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.

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.

[ancientmariner]

You might want to check out the International League of Atomic Women website (you can do a search on Atomic Women). I wish I had known about the website before I had RAI in October of 2002.

[lalatata]

Thanks a lot for the info. Did RAI not work well on you?

[ancientmariner]

RAI made me very hypo very fast. And my doc kept waiting fro my TSH to rise, which it did not. I thought I was going to die before he finally put me on meds (Synthroid). And even then I have never felt completely well since, but the docs keep telling me it's not my thyroid any more because this one lab number is "normal". Well, it's not normal for me to gain 50 lb in 3 months (I only gained 10 in 2 years after being told I was menopausal), and all the other symptoms I didn't have before they killed my thyroid "Can't possibly be my thyroid" according to the docs.....makes me so mad!

[Ussie]

My experience after RAI was not very good. A few weeks after RAI, even taking 300mg of PTU a day, my thyroid hormones increased. I had to take Toprol XL 100 beta blockers to calm my heart palpitations down(which scared me so much).It also increased the inflammation of my eyes causing them to be red and dry, with blurry vision.

Now this does not happen to everyone that I have talked to. If I would have known this could happen, it would have been my very last choice of treatment.

Before RAI I was taking PTU and it was hard to regulate the dose, just as if you are taking thyroid replacement hormone. During PTU treatment my cholesterol got up to 304. My doc never mentioned once that I might be hypo.My pulse was even very low, but never once mentioned hypothyroidism.  Because the only time I have had trouble with high cholesterol is with hypothyroidism.

I think only us patients know how we feel IMO.

[lalatata]

I am really sorry for what you guys are suffering :(. I can't see my future like this. So I decided not to do RAI anyway. Maybe surgery is better?

I just don't get it: if people after RAI treatment have to rely on medicine (synthesis or sth else) for the whole life, why not just taking medicines (Tapazole, PTU etc) for several years to see whether the medicine works? Why are the doctors in such a rush to put the patients on RAI? Does long-term taking medicines hurt our body?

[lalatata]

Thank you so much for your detailed explaination. I am just wondering whether the pressure feeling at neck (or belch) is related to my thyroid problem? Thanks.

[Mark Lupo, M.D.]

neck pressure may be from a large thyroid (goiter).  Also many hyper patients have increased acid reflux which can cause neck symtoms (and yes, eructations).  Also, PTU can increase nausea and potentially reflux...

[ancientmariner]

There are many other support groups and message boards for thyroid issues. On the Natural Thyroid Hormones board on Yahoo, there's a woman who refused RAI, stayed on ATDs for several years and ended up hypo anyway, just like she would have with RAI, but slower, and without dangerous radiation like I had.....I would recommend that you educate yourself by joining other groups, too, and by reading books on the subject. You are the only one who can decide which path to take in your treatment. I'm so glad you decided not to do RAI; ask your doctor about staying on the ATDs longer before deciding on surgery.