What To Expect After Radioactive Iodine Treatment

What To Expect After Radioactive Iodine Treatment

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What is your life going to be like after radioactive iodine treatment?

Will you be able to lead a normal life? Will destroying your thyroid gland have long-term consequences? Will it cause you to gain weight? 

These are just a few of the questions that I want to answer in this article. 

You can obviously survive after RAI (otherwise they wouldn’t do the procedure) but I want to teach you how to thrive afterward. 

And to key to getting there is to understand what happens to your body after this procedure and how it influences your thyroid function. 

Many people undergo radioactive iodine treatment (RAI) without really understanding what is happening in their bodies. 

Let’s clear the air on this topic:

What is Radioactive Iodine Treatment?

Radioactive iodine is a procedure that is often used to treat hyperthyroidism. 

The entire goal of the procedure is to put radioactive iodine molecules into your body with the sole purpose of destroying your thyroid gland. 

Radioactive iodine works by taking advantage of the physiology in your body (1). 

Why?

Because your thyroid gland concentrates and stores iodine in your body. 

So when you take radioactive iodine your body will automatically take it up and store it in the thyroid gland. 

main reasons to get radioactive iodine treatment done

This keeps the radioactivity from destroying other cells in your body and only allows for the destruction of your thyroid gland. 

It is worth pointing out, however, that some other tissues can take up the radioactive iodine such as the beta cells in your pancreas (2) though it isn’t clear how much damage exists (if any) in these other cells. 

But you probably at least know a little bit about RAI or you wouldn’t be here. 

More important than how the procedure works is how it will affect you afterward. 

Should you expect to live a normal life afterward? Will you be able to maintain your current weight? What medications (if any) will you need to be on?

These are the questions that I want to focus on today and hopefully answer many of the current questions that you already have. 

With that in mind, let’s jump into what you should expect after your procedure…

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What Should You Expect?

#1. You’re going to be radioactive (for a few days)

One of the more surprising aspects of getting RAI done is the fact that you are quite literally radioactive after your procedure. 

The good news is that this radioactivity does fade over a short period of time (usually 5 to 7 days) but the bad news is that you need to stay under certain precautions during this time. 

You won’t be able to sleep next to people, go to work, prepare food for others, go into public places, fly on an airplane, ride a bus, share utensils with others, sit on a public toilet, and so on for about 1 week (3). 

You probably will not feel sick during this time, but these precautions are in place to prevent you from accidentally harming another person!

The good news is that this particular side effect doesn’t last very long (compared to some of the other issues we will be discussing next). 

#2. You may gain weight

This is probably not what you want to hear, especially if this is a procedure that is necessary for your health, but it’s still important to know about it. 

You may gain weight after you undergo radioactive iodine treatment. 

Why?

It has to do with how important your thyroid is in regulating your metabolism and your weight. 

And, if you destroy your thyroid gland, it turns out that that may have consequences on your metabolism. 

Anecdotally, you’ve probably already heard stories about people gaining weight after their procedure. 

But this goes beyond anecdotal stories. 

many people gain weight after RAI

Many clinical studies have also confirmed that weight gain after RAI is a real risk. 

The good news is that not every single person who gets RAI will necessarily gain weight. 

But it does increase your risk of weight gain if you have the procedure by about 2 to 3 times. 

One study looked at 157 people and tracked them both before and after their procedure. 

The researchers found that the proportion of overweight people increased from 9.6% to 18.5% (almost double) and the proportion of obese patients increased from 6.4% to 21% (almost quadruple) (4). 

They also found that nearly 1 third of all patients (31.2%) moved into the overweight or obese category from a lower weight category (based on BMI charts by the CDC). 

If we extrapolate out this data then it means that on average 30% of all people who undergo RAI can expect to gain some kind of weight. 

It seems though that people who are already overweight BEFORE their procedure probably have the worst outcome and tend to gain the most weight compared to others. 

Your best bet to AVOID weight gain after RAI is to go into your procedure with a normal weight and to maintain a healthy lifestyle both before and after. 

Just realize that you will always be in a ‘sensitive’ category and you will be more likely to gain weight compared to people with their thyroid intact. 

#3. You will need to (most likely) be on medication

This isn’t always true, but it is true for MOST people. 

It turns out that thyroid hormone is actually necessary to not only thrive in life but also to survive. 

If you don’t have thyroid hormone at all then you risk the chance of coma and death. 

Because of this, people who undergo RAI (meaning those who destroy their thyroid gland) need some type of thyroid hormone replacement. 

This comes in the form of a simple hormone medication that you can take each and every day to help normalize your thyroid hormone levels. 

As I said earlier not everyone will necessarily need thyroid medication after they ablate their thyroid. 

Why?

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Because it is entirely possible to only destroy a portion of your thyroid gland and not the entire gland. 

If you destroy the entire gland then you will definitely need to be on thyroid medication. 

But what if you only destroy 30 to 40% of your gland function?

If you fit into this category then you may not need to use thyroid medication afterward. 

Your Doctor will be able to help determine how much of your gland was destroyed. 

#4. You may experience other thyroid symptoms

While we are on the topic of thyroid medication we should also spend a few minutes talking about other symptoms you may experience. 

Remember:

Once your thyroid is destroyed, it will no longer work exactly as it used to. 

As a result, it isn’t uncommon for some patients to suffer from persistent symptoms of hypothyroidism (meaning that they don’t have enough thyroid hormone). 

Symptoms in this category include:

  • Weight gain (already discussed)
  • Fatigue or low energy
  • Hair loss
  • Constipation
  • Cold body temperature
  • Eyebrow hair loss
  • Brain fog
  • Depression

The presence of any of these symptoms AFTER your procedure (especially if you didn’t have them prior to your procedure) may be an early indication that your thyroid medication is not optimized. 

These symptoms are not caused by the procedure itself but rather a consequence of the damage of the thyroid gland and the inability of your body to produce thyroid hormone. 

The good news is that you can fairly easily identify these symptoms and you can order tests to determine how well your thyroid is functioning. 

By looking at markers such as your TSH, free t3, and free t4 you can get an idea as to what is actually going on. 

If you find that your TSH is high or that your free t3/free t4 is low, then this may be the cause of your symptoms. 

Don’t let this be of major concern to you, though, because in most cases these symptoms can be managed.

It may take some trial and error but 80% of patients should approximate normal symptoms over a few months. 

The other 20% may require additional testing and the use of other thyroid medications which contain T3 thyroid hormone

#5. You should consider yourself “hypothyroid”

This is an extension of what we’ve already discussed but it’s worth spending some time on this specific point. 

Most people who get radioactive iodine treatment do so because they are considered to be hyperthyroid (sometimes people get RAI for thyroid cancer (5) but most people get it for hyperthyroidism). 

Hyperthyroidism is a condition where your body produces too much thyroid hormone so the treatment is to destroy your thyroid gland and stop that production. 

The most common reason for RAI is the autoimmune condition known as Graves’ disease (6). 

The problem is that once you destroy your thyroid gland you are no longer considered to be hyperthyroid. 

Instead, you are now hypothyroid (7) (meaning you don’t produce enough thyroid hormone on your own). 

This distinction is actually quite important. 

Why?

Because it changes how you should be thinking about your medical condition, it changes the types of natural treatment options that may be available to you, and it changes your treatment. 

Instead of working to actively reduce thyroid function in your body (which is what the treatment for hyperthyroidism is), you may want to start focusing on how to optimize what little thyroid function you have left. 

After all, didn’t the radioactive iodine work to reduce your overall thyroid hormone production? 

Now that you are considered to be hypothyroid there is a world of potential therapies, supplements, regimens, and protocols that are available to you. 

#6. Men may have short-term infertility afterward 

Important to men is the fact that radioactive iodine can cause short-term reductions in sperm count for up to 2 years after your procedure (8).

This may or may not be important to you based on your age, your gender, and whether or not fertility is something you are interested in but, again, it’s worth knowing about. 

You can get by this side effect by simply banking some of your sperm prior to your procedure and then using that sperm at a later date with procedures such as intrauterine insemination. 

If you are a man, just be sure to consider this before you get your operation. 

Can You Ever Restore Thyroid Function?

The answer is maybe. 

But why would you want to restore thyroid function to your thyroid gland if you had it destroyed because you were already producing too much?

It may sound counterintuitive, but you’ll understand why you might want to after your procedure. 

It turns out, which should come as no surprise, that medications are not a 100% complete substitute for the activity that your thyroid gland does on a day-to-day basis. 

There’s no way for doctors to give you a pill once a day and for that pill to perform the exact same function that your thyroid gland does every minute of every day. 

Because of this, people may experience symptoms that may lead them to want to restore whatever thyroid function they can. 

But is it actually possible?

The answer is maybe, and it depends on the person, how much damage was done to their thyroid, and other factors that aren’t always in your control. 

But, if I was being honest, I think that most people should not rely on the possibility of restoring much thyroid function after their procedure. 

This shouldn’t stop you from trying natural therapies (as long as they are relatively inexpensive and not harmful) but you should have reasonable expectations as you do so. 

I’ve certainly seen some patients reduce their total dose of thyroid medication by undergoing some natural therapies to help restore thyroid function after RAI (but the number of patients I’ve seen in this category is somewhat limited). 

Conclusion

 The bottom line?

You can expect to live a fairly normal life after radioactive iodine treatment but your life will probably not be exactly as it was before your procedure. 

For most people, this means that you can expect to live at 80-90% of your ‘normal’. 

Some people, however, may have further trouble after their treatment and suffer from weight gain, hypothyroid symptoms, and other issues. 

Perhaps the most concerning of all of the issues after RAI is weight gain. 

While you can’t control this side effect 100%, you can do your best to mitigate (or reduce) any weight gain by going into your procedure at a normal and healthy weight. 

Now I want to hear from you:

Are you thinking about getting radioactive iodine treatment?

Have you already had RAI?

If so, what are you struggling with? What are you concerned about?

Leave your questions or comments below! 

#1. https://www.ncbi.nlm.nih.gov/pubmed/22914564

#2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5413587/

#3. https://www.liebertpub.com/doi/abs/10.1089/thy.2010.0090

#4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5455212/

#5. https://www.ncbi.nlm.nih.gov/pubmed/28545679

#6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3336179/

#7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851449/

#8. https://www.ncbi.nlm.nih.gov/pubmed/18832945

radioactive post treatment guidelines and expectations

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About Dr. Westin Childs

Hey! I'm Westin Childs D.O. (former Osteopathic Physician). I don't practice medicine anymore and instead specialize in helping people like YOU who have thyroid problems, hormone imbalances, and weight loss resistance. I love to write and share what I've learned over the years. I also happen to formulate the best supplements on the market (well, at least in my opinion!) and I'm proud to say that over 80,000+ people have used them over the last 7 years. You can read more about my own personal health journey and why I am so passionate about what I do.

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76 thoughts on “What To Expect After Radioactive Iodine Treatment”

  1. I had RAI treatment 4 weeks ago 29.9 mci due to hyperthyroid “hot noduals”. My blood work prior was
    TSH. <0.01
    Free T4. 20
    Free T3. 8.1

    Because I began feeling very unhealthy this week further blood tests were done. Results were

    TSH <0.01
    Free T4. 37
    Free T3. 17.9

    Now they are suggesting a second treatment at a higher dose.
    5 years ago I had intense radiation treatment for breast cancer and was told to avoid X-Rays, Cat Scan, unless absolutely necessary.

    I am 70 years old and I am beginning to worry. Please give me your thoughts.

    Reply
    • Hi Gillian,

      It doesn’t appear that the first treatment was sufficient to destroy the hot nodules (or there is some other issue).

      Reply
  2. I underwent RAI 14 years ago for Grave’s disease. Prior to that, I always weighed in the 125-130 lb range (normal for my height). Within the first 2 years I gained 15 pounds with no diet/lifestyle change. Over the next 5 years I gained another 10 lbs. I eat a diet free of inflammatory foods and exercise 3-5 times a week, but I can’t get my weight to budge more than 5-10 pounds. Any suggestions?

    Reply
  3. Good Afternoon Dr. Childs,

    I have my thyroid ablated about 20 so years ago. I am now 54 years old. I was originally on Synthroid for a while and as I got older my body changes and T3 was required for optimal levels. I have since been on a roller coaster ride with the levels fluctuating up and down and not sure why. I have been on bioidentical hormone replacement therapy for 3 years now and feel somewhat better. Is there specialist out there that can look at your overall health history and help you get a regime that is right in regard to everything that is going on with you, i.e. menopause etc. I ordered the dutch test so have those results but I cannot read it and I am not sure what it all means. I tend to have a high heart rate when I exercise it goes up to 130 righ away then may go as high as 174 at harder workouts. I am worried the medication or added T3 (Armour)is making that happen and it could be hurting my heart. Currently they have me on a combination of 100mcg Synthroid with 1 Grain of Armour (60mg. I must admit I feel like a lab rat at times with all the tests and trials. Thanks look forward

    Reply
  4. I had radiation treatment for my thyroid 5 days ago to shut down my thyroid. Can you tell me about when I will start medication, or should I be tested first?
    Thank You

    Reply
    • Hi Arlea,

      It really depends on whether or not your entire thyroid gland was destroyed. If it was, then you will most likely need to start thyroid medication relatively soon (within the next days to weeks).

      Reply
    • I have Graves Disease and lost 40 pounds. I’m planning on RAI in the next 2 weeks. What can I be looking at regarding weight gain. I have AFib and concerned for my heart about going into the obese stage. Thank you.

      Reply
      • Hi Shirley,

        It’s impossible to predict how any one person will react to any given treatment or operation but the available research suggests that those who go into the procedure overweight are more likely to gain weight afterward. For this reason, it’s ideal to try and lose weight prior to the procedure as opposed to after.

        Reply
  5. Hi, Dr. Westin Childs…I had Graves’ disease and had the radioactive iodine treatment…your information was so good to read..weight gain is becoming an issue… I just watch what I eat and exercise as much as I can… I also have osteoporosis… but managing well so far… Thank you so much for your information.

    Reply
  6. Hi, doctor, I am in a lot of pain I stay cold 100 percent of the time with body aches sleepless nights. However, I haven’t been placed on any med after treatment what is your professional opinion.

    Reply
    • Hi Linda,

      It sounds like you are not being treated adequately. You should have your thyroid lab levels tested to see if you need medication.

      Reply
  7. I had radiation iodine therapy in late September. I was tested in 6 weeks and my thyroid numbers were still high so I was not tested again until Feb. 2019. At that time my numbers were so low I was experiencing eye problems. Redness, tired eyes, they were seeing double, and not accommodating going from reading to distance. I saw 2 eye professionals. No one said it could be from my low thyroid, but I found clinical trials that mentioned it was rare but could affect eyes and should be treated aggressively. The doctor started me on .50 of Synthroid, and taking the first dose my eyes cleared the next day. After that they again were having the same symptoms. My endo physician would not increase the dosage so I went to my G.P. who gave me 150 of Synthyroid. the tests after 3 weeks showed my TSH to be 12.920 and now she wants to increase the meds to 175. I am concerned. My eyes improved for a while but now seem to be getting worse. Is this normal? Are those levels indicative of something going wrong?

    Reply
    • Hi Dianne,

      It sounds like you are being underdosed based on your TSH level. Your TSH should always drop as you increase your thyroid dose and you should aim to get that TSH around the 1.0 range (which is considered normal in healthy adults). In regards to your question, it’s normal to feel terrible if your TSH is so high, but it’s not normal for your doctor to try and not optimize this level. There’s no way to tell if your eye symptoms are related to your thyroid without first trying to optimize your TSH (which should be your next step). If it doesn’t go away then you have your answer, and if it does go away then you also have your answer.

      Reply
  8. I had a partial thyroidectomy a week ago, (Right lobectomy) With this my Dr. noticed “hard bumps” in the tissue, and sent to pathology and cancer was found. I don’t have any definitive results/reports as yet, however, I do have that gut feeling. I had this feeling when I went into surgery last Tuesday, but shrugged it off as just my fears in over time. I’m a nurse, and tend to over think things. As it turned out, my fears, or premonitions were right. So, now my doctor told me a list of things to expect over the next while. And in addition to going back to surgery for the left lobectomy, to expect to be on the Radioactive Iodine therapy. He also told me something about an injection of something, as well as being on some sort of thyroid hormone replacement therapy for the remainder of my life. I will know more in a few days when he has all the pathology reports back etc. In the mean time, thanks to the WWW. and my being a nurse, I’m researching and learning all I can. I’m 60 years old, so it’s not like I’ve got a “full life” ahead of me, not a big deal. It is what it is. My biggest fear is loosing my hair, my identity as a woman. My hair has been a part of me for many years, it is waist length, and I’m wondering if having it cut off and sent to make a wig for myself would be best or just wait and see if I do in fact loose my hair. Strange I know. I’m worried more about loosing my hair than my life. My hair is the one and only thing about my looks that is considered beauty. I know, I know, I shouldn’t be so vain. But I’m not a “pretty” woman, rather plane, and frumpy. My hair has always been my “pretty” part of me, the one thing that makes me feel like a pretty girl. Even at this age, I still want to feel and look pretty. I know I shouldn’t be so vain, but honestly I am on this.

    Reply
  9. Hi,
    This is my story. Fifteen years ago diagnosed with hyperthyroidism and had RAI. I was normal weight and now frustrated to be 30 pounds overweight. I was exercising and my nutrition intake is organic most fruits, vegetables, meets grass fed etc. I have not lost any weight. My exercise routine has been reduced because of back injuries and arthritis. Recently also diagnosed with B12 deficiency and had exhibited most of the symptoms! The interesting part was the B12 level was “normal” at 737 but methylmalonic acid slightly high(319) and homocysteine at 13.9. My Dr. stated that my MTHFH enzyme is blocked indicating a genitic issue. Last week labs getting better with a methylpro supplement. Homocysteine down to 11.5, methlymalonic acid down to 257.
    So, I need to have an exercise program, vitamin and minerals that may help, food intake regulated to progress to increasing bone mass and weight loss. I forgot to mention, I was on nature Throid and changed to NP thyroid because of the dosage I need. This is possibly TMI but any guidance and suggestions would be greatly appreciated. Thanks. Looking forward to your feedback .

    Reply
  10. Dr.

    I am in the military, stationed in Fl. I had severe fatigue, sweats etc and they did labs and said my count was high 5.4 and referred me to a civilian provider. They are basically useless here, Ive been to two, and I am actually SCARED for the first time in my life. The last person put me on methazolo and I read the awful side affects. They said I have HYPERthyroidism but she said I have a HIGH metabolism which doesn’t make sense?! I am gaining weight! and seriously lethargic?! Then she said I would have to have iodine radiation if these pills didn’t work. I don’t want radiation therapy especially as she hasn’t even told me what caused this. What do you recommend? I have the symptoms of hypo not hyper, is she wrong? There is nowhere else to go tricare insurance is awful. Please help!

    Reply
    • Hi Aneta,

      The connection between your weight gain and hyperthyroidism is explained here: https://www.restartmed.com/methimazole-weight-gain/

      People who do have hyperthyroidism tend to have a fast metabolism, but the treatment for hyperthyroidism (the medication you are taking) slows down the metabolism dramatically which leads to weight gain. This usually means that you are being overtreated and are being put into a state of hypothyroidism.

      Reply
  11. I had RAI treatment for severe Graves disease in 1993. Since then I have suffered most every day with severe chemical sensitivity. My health is anything but wonderful. I cannot take anything other than porcine thyroid with rice flour as filler (compounded). My TSH is very low but my free T3 indicates my body isn’t using T3. My symptoms include very dry skin, heart problems, severe pain, muscle problems, joint issues, sometimes brain fog, hair is brittle and dry, constipation, stomach issues, basically nothing is right since the treatment. Some doctor told me to move to the mountains, which I did to avoid toxic chemicals. I am now living in the Midwest originally from Iowa. I fall backwards with no explanation other than car exhaust in my air space, with some injuries as a result. Life has been very difficult as I basically go very few places now and live a life with little social contact. I eat all organic. I have been diagnosed with Mitral Valve Prolapse, asthma, arthritis, allergies, MCS, auto-immune thyroid disease, etc. Several of my siblings make fun of me and say I am “hiding” but don’t even know what Graves disease is and I was not around them and did not share my health issues until recently with them. I had a miscarriage about a year after the RAI treatment. Initially, before treatment I went to a renowned clinic due to having double vision. They ran many tests including an cerebral angiogram to check for a brain tumor which I doubted. When they injected RAI contrast dye through an IV for the test, I went in shock and they stopped the testing until later that day. They wanted to give me more RAI IV for test, but I refused and I know I would have died had they done that. Five years later I was diagnosed with a severe case of Graves and the doctor said RAI was the best course of action and convinced me of that. It was not and I have been searching for help ever since. If you have any thoughts, I would appreciate those.

    Reply
  12. Hello Dr.

    I had RAI 1 month ago. 3 weeks after I was taken off of PTU. 3 days after that I started to become sick after I ate an unable to sleep. I am considering following up with the endocrinologist in the morning.

    I can’t find anything suggesting these are expected symptoms after RAI. Since I was at the office a week ago complaining about what PTU was doing to my body I feel nervous about calling the endocrinologist again.

    Reply
  13. Your article is quite interesting. I wish I had found it weeks ago, but I didn’t so I have to move on. Here is my story: A year ago I felt a bump on the right side of my neck, so on a routine follow up visit with my PCP for diabetes, I mentioned it to him. Along with a pain and numbness in my right hand. Yup, the pain and numbness Dx CTS, that was put on the back burner for a while, as it wasn’t all that troublesome at the moment. It was also noted my B/P was sometimes Hypertensive, and my glucose readings were starting to climb. Prior to discovering the bump, I had reversed my Diabetes and had consistent HA1C readings of 5 or lower. And was doing well on a vegan/plant based diet. This particular visit, my HA1C was up to 6 point something, and caused alarm as I am strict with my diet, admit though at that time I allowed myself a “free” day to eat as much and all the treats I wanted or craved. So, fast forward to February of this year, all blood tests were negative for signs of cancer, so no fine needle biopsy was done, and at that point it was just a simple goiter, and was supposed to simply have a partial right side lobectomy, and after a couple weeks return to work and life goes on. But my surgeon palpated three nodules and pathology report confirmed PTC, so a completion surgery was scheduled and performed this past April, and that lobe also showed cancer nodules on pathology report as well as some tissue purposely left because some cancer nodules had invaded my vocal chords. I was put on Levothyroxine 175, then when I met my endocrinologist, by that time TSH levels had dropped some so Levothyroxine down to 137. Now, yesterday and today I had my Thyrogen injections, and tomorrow I go get my I 131 RAI pill and on home isolation for the following 7 days, and then my whole body scan. No one told me about any of the particular foods to avoid, I told everyone that I am vegan/plant based diet to control my diabetes and because of many food intolerances to animal proteins. The hardest time I had and have with my diet is getting hospital dietitian to understand that vegan/plant based does not mean fish and chicken are allowed. So, I ate what I could and left the rest. For my surgery in April, I had a double whammy because a week prior to my surgery I had a molar tooth extracted with surgical dental sedation, and was still on a soft diet, so that was easy, they supplied me with baby food pureed fruits the entire time I was in the hospital. I am feeling all the emotions you described, depression is a big one, but all anyone is interested in is giving me another pill to “make me happy again.” I have battled my weight since I was a child, I had dropped from 400 pounds to 210 about six years prior, and was afraid all my efforts would be lost now. But over the past month I see my weight dropping a half to a pound daily. I work hard at it. To keep my glucose readings at or below 120, the desired reading by my PCP and endocrinologist, I am strict to my vegan/plant based diet, and consume 600 to 800 calories per day. Also I drink 100 ounces of water plus other hydrating fluids and food per day. I read your list of vitamins all NINE of them, and the only thing I could think of is “NO! I’M HAVING A HARD ENOUGH TIME WITH WHAT I TAKE NOW! NOT GOING TO TAKE MORE PILLS!” Some on the list I can’t take to begin with, iron is one, when I take it, no matter how strict I am about taking it so many hours before or after other meds and meals, I still puke it up about fifteen to twenty minutes after taking it. Oh, my CTS now has to be taken care of too, and ortho doc has me on Vit B6 for the nerve damage, also the CTS has gone into my elbow, shoulder, neck and back now too. I have my EMG the end of the month and take things from there. One thing I didn’t see in your article is the correlation of Thyroid to Diabetes and CTS. Then, also there is the women’s health portion of all this, and so I had my annual, and a polyp was found on my cervix, it was a rather large one, and thankfully no cancer cells on that, my PAP I’m waiting for results. Then too, my annual eye exam with dilation is due now, that appointment is upcoming, as well as further dental with my regular dentist now that I have the one impacted and rotted tooth extracted. So, I have to laugh at your 80 to 90% back to a normal life. I don’t see such good numbers. First off, why am I so tired? I have to take my Levothyroxine at midnight, as in the morning it causes me to have a jitteriness and brain fog, that is bothersome, and to have it in the time frame away from other meds and meals, midnight is the only option. So, if I go to bed earlier, I have to set my alarm clock to get up to take the damn pill, then have a hard time to get back to sleep, then just when I do fall into slumber, it’s time to get up and going for the day, and take a list of other meds, and monitor VS and glucose readings. One doctor wants a monitor of pulse five times daily, he’s concerned about para thyroid damage. Another doctor wants my temp and glucose readings, temp she’s ok with once or twice during the day. Then PCP wants B/P readings and daily weights. So, when I get up at Midnight unless I stay up that late, I get a full set of VS plus my glucose readings, and take my Levothyroxine. Then I get up at 7AM and during that first hour get my daily weight after I void and empty my bladder, and strip down for a true body weight. (I also bought a digital scale to get the most accurate weight) Then my full set of VS and glucose readings. Eat breakfast. I eat three meals with three snack times. If I take a snack is determined on what my glucose reading was. If below 100 I will consider a snack of some nuts or piece of fresh fruit. 12 noon, lunch and VS with glucose readings. 5PM supper with VS and glucose readings. 8PM HS snack and VS and glucose readings. I also noticed my left leg larger than my right, so I do a daily measurement at mid calf before I eat or drink anything. With a regime as this, it’s no wonder for depression, no sleep! No social life, have to check VS and glucose readings so often. And I’ve become “Flat” with my emotions now. I used to be bubbly, and interactive with people. I had the motto: “I’ve never met a stranger, they are just the friends I haven’t met yet.” Now, I would rather not talk to anyone, and if I’m forced to, I keep it to bare minimum. And I cry at the drop of a hat now too. Another problem I’ve faced is I ask one doctor about this or that feeling I’m having and I get told that doctor doesn’t deal with that have to tell the other doctor, I tell the other doctor and they tell me I have to tell another doctor because they don’t deal with that issue. I feel more like a ping pong ball being bounced back and forth! I’m at the point now where I told all the doctors for my medical team, and team being the operative word here, that I’m not going to offer anymore feelings of what I’m going threw, or feeling, I’m not going to ask anything, nothing, you all have my lab reports and other diagnostics, y ‘all can figure it out for yourselves! They all tell me Thyroid Cancer is the easy cancer. Told to me by each and everyone who’s never had this cancer! The next person to tell me how easy this cancer is, I’m going to pull their toenails out threw their nostrils then tie them in a knot out their but hole. I’m having my RAI tomorrow, and my oncologist said I could go back to work right after. Um, I’m a night shift nurse on a dementia unit in a nursing home, would you want me taking care of your loved one and have the brain fog, the jitteriness, the irritableness, and depression? Not to mention the radiation! He may be the one with that piece of paper that says he can prescribe and administer that damned pill, but I have a gut feeling he’s too cavalier about it all. I am on my own taking more precautions, and going at this as a Haz Mat Tech, Yes, I’m that too, as I am a volunteer fire fighter/EMT/ and wear many other hats as well as Haz Mat Tech and am certified in Decon operations. And that training tells me I won’t be ready to go back to work that afternoon. Calculating the half life of radiation, it will be a couple months before I can be around nursing home residents and pregnant women, and each and every nursing home has several pregnant women on each unit and each shift. I am a female, and I’m 60 years old, soon to be 61. This ThyCa has kicked my Gluteus Maximus but good! I still have to work a few more years, so I’m looking and applying for other jobs that aren’t as stressful, that are day shift Mon-Fri, with weekends, holidays and nights to myself. I expect to be back to probably about 60 to maybe 70% and that is pushing it.

    Reply
    • I was diagnosed with Thyroid lung cancer 18 months ago. My oncologist kept sending me to one specialist after another. I underwent many painful and scary procedures.
      My Mother passed suddenly, from Pancreatic stage 4 cancer, eight days prior to my diagnosis. She was my Rock and it’s been a tough two years dealing with my cancer without her here.
      In October I had Thyroid and Parathyroid surgery. Over the Christmas holidays I underwent my RAI treatment. The 14 day no iodine diet was quite difficult.
      Since my treatment I have felt like I’ve been beaten. I’ve been vomiting and other gastro issues.
      My neck is still swollen and sore. I have multiple mouth ulcers, the inside of my nose is raw and bleeds multiple times a day and is very painful. And lastly my eyes will not stop aggressively tearing up. And the tears burn the skin around my eyes.
      The only thing my doctor is doing for me is prescribing me a Lidocaine mouth rinse.
      She’s doing nothing for all my other symptoms.
      I have yet to find any information that relates to my RAI side effects.
      Is there anyone else out there, experiencing similar symptoms?

      Reply
  14. Thank you for the article

    Question…. what is the “normal” amount of time a person needs to be off thyroid supplemental medication before the radioactive iodine treatment is done?
    Is it 10 days? Or longer…
    Thank you

    Reply
  15. I had RAI treatment 21 April 2017 dose was 400 MBq ( United Kingdom) I was diagnosed Graves’ disease 2008 my thyroid levels wasn’t massively high I refused rai treatment 2011 contunie Antithyroid medication treatment almost 8 years ! After rai treatment I had blood test results was :freet4 was 13.3pmol/L (11-23)free t3 was 4.30pmol/L it was normal (3.1-6.8) I was happy and I had another blood test 26 July 2017 and results was TSH was 0.01 (0.35-4.94) freet3 was 16.32 pmol/L (never ever high like this before) (3.1-6.8) my freet4 was 46.3 pmol/L (11-23) I was shocked how this happened after RAI treatment Sir ? My endocrinologist said RAI didn’t work I need surgery or second RAI treatment my other hormone results was :FSH 5.3(1.5-12.4)LH:8.8(1.7-8.6)
    Serum folate levels was :17.1(2.0-18.7)b12 vitamin levels was :565 (197-771)ferritin levels was :175.9(30-400)red cell count was :4.87(4.25-5.77)white cell count was :5.6(4.5-13.0) I don’t understand how this happened sir ? Any idea Sir ? Thanks Doctor please

    Reply
  16. I had private clinic blood test after RAI sir this was the result:17 may 2017 :DHEA:11.020(0.44-13.00)
    SHBG :43 (16-55)
    LH :4.12(1.70-8.60)
    FSH was :4.33(1.50-12.40)
    Total testosterone was :10.47(7.60-32) low
    Free androgen index was :24.21(24-104) and endocrinologist said RAI didn’t work I don’t understand how thyroid levels goes up after RAI treatment 21.04.2017)

    Reply
  17. I had RAI about 15 years ago and yes I have gained weight, less energy & I sweat a lot(buckets) doing nothing…
    My doctor has changed my meds 5 times… I was doing better if my medication was a little on the high side…I had started to lose wait, had more energy & the best ever ‘NO SWEATS, but she said no, WHY!

    Reply
  18. I had RAI 20 plus years, I am 56 and my numbers are good. I am on NP with an additional Synthroid to balance me out. I feel good, but still struggling with tiredness and some weight gain (some weight gain due to post menopause). I would like to try some of your supplements, but not sure which ones I should be looking at.

    Reply
  19. my husband had the iodine radiation, for Graves disease. He is now smelling smoke, all the time. is this a side effect of this proceedure

    Reply
  20. Hello-

    I had RAI treatment done 10 years ago. I have noticed more and more symptoms within the past 5 years That lead me to believe i May have become hypothyroid. I have expressed my symptoms to the dr and she did a panel revealing my TSH to be 3.687. Prior to my RAI my level was .03.
    She said I am normal and not to worry.
    If I have all of these symptoms and have had levels increase so much, is it worth seeing another dr due to my history or do you think this is normal?
    Thank you for any advice!

    Reply
  21. So is there any possible way to lose weight after the Radioactive iodone treatment or is it pretty much an absolute lost cause? I guess that is my main question because I am willing to do the hard work even if it takes a long time. It’s the working hard for absolutely nothing that I don’t want to do!

    Reply
  22. Hi! I know this post is older but I am considering radiation! I have a quick question. I have Graves’ disease and recently have a hyperthyroid flare up after being in remission, I went back on my meds but was recently taken off to see if I can do radiation. My question is what if I do radiation while my thyroid isn’t hyperactive? I don’t feel like I have gone back hyper after being off my meds for 4 weeks

    Reply
  23. Hello Doc!

    I had RAI treatment year 2010, and now I am taking levothyroxine for my hormonal replacement since I am considered as hypothyroid patient. My problem now is my hair loss and I can’t help get rid of this problem. Please help me what to do with this. Thank you and God bless!

    Reply
  24. I am getting ready to have thyroid removed due to cancer. I would actually think about taking chances with the cancer instead of gaining weight. I am already over weight and working on losing it. They have already said I would need to take the radiation iodine treatment. I am 67 years old and just wonder how many years I may have either way.

    Reply
    • Hi Donna,

      A better option might be to try just a partial thyroidectomy or to take out just the half of the thyroid with the cancer. There’s a higher risk that the cancer comes back but it’s also a way to preserve some thyroid function.

      Reply
  25. Hi doc! Just have my RAI 2days ago. After reading all the comments I feel worried about the side effects.I saw in the report that they give me I-131 15mcl for hyperthyroidism. Pls.can u explain about this. Thank you! Haven’t met yet my endoc after the RAI.

    Reply
  26. Hello, not sure if this post is still active. I has RIT approx. 20 yrs ago.
    I have been battling back and forth with weight gain and hair loss, mild
    depression, brain fog and other symptoms for years now. I was recently on Naturethroid for some years and it seemed to be a better choice for me, it was quite the battle to get the Drs to prescribe it. They said it was
    not the treatment of choice for them. While I was taking Levothyroxine
    I was experiencing heart palpations, diffuclty breathing while lying down, weight gain. After years of somewhat of a normal feeling with the Naturethroid I received a letter saying they were taking it off the market. So for the last 6 mos I’ve had to take Levothroxine. The amount
    that I need doesnt come in one pill so Im taking 100 mcg one day and 75 on the other. Well since this journey has began Ive lost almost all of my hair and gained a ton of weight. I know some people contribute this
    to covid weight, but now the hair loss! I have been tested and my doctor says that Im right where I need to be. How is this happening? I hope this post is still active. Any help will be appreciated.

    Reply
  27. Hi
    I had RAI in 2010 and was eventually started on a regime of 150 Levothryroxine daily, about 8 weeks post treatment. My GP at the time liked to keep me on that level despite blood results as he said it was better for patients to be at the higher end of the scale in case they needed a metabolic boost when ill. I felt well on this level.
    I moved doctors in 2016 and my new GP immediately put my dosage down to 125 despite my protestations that I felt absolutely fine on 150.
    Since then, each year various GPs have looked at my thyroid function test results, focused solely on the low TSH reading and have now reduced my levothyroxine down to 100 despite my arguments to the contrary. I keep telling them that I don’t feel so good – flaking nails, dry skin, fatigue, weight-loss resistant with brain fog. However, all of these symptoms are also part of the menopause for which I now take HRT.
    My last blood test shows TSH of 0.02 and I have been asked to go for a follow up test. I know they are going to try to drop me further.
    As I am not a doctor, my specific question is why does the level of levothyroxine I require change if my thyroid was destroyed? Is it healing and producing its own thyroxine now? How will I know if I am producing my own thyroxine? And how can I persuade my GP to think about more than a TSH reading?
    Many thanks in advance for any help.

    Reply
  28. I had RAI back in 2010 For Thyroid nodules And I have been on hormone replacement ever since I get my blood tested every 3 months And I’m either too high or too low So I keep getting switched from a 112 To a dose of 125 This is been going on for several year several years so now my doctor has me switch every other day Between the 2 doses to see if this will stabilize my levels My problem is the weight gain That came after the RAI treatment treatment.. I am in a gym 3 days a week I do water therapy/aerobics 3 days a week and I still can’t lose weight I try to eat a low calorie Healthy diet Mostly either paleo or keto and no matter what I do I still can’t lose the belly fat. I have tried everything and it is frustrating. How can I speed up a metabolism if I don’t have a thyroid anymore because of the RAI?

    Reply
  29. Hello I had the rai treatment 33 years ago and I have never felt good since then , more recent they ultrasound my thyroid gland and the lady who did the ultrasound kinda freaked out saying to me where is your thyroid gland hat did they do it it, I was in the hospital with pancreatitis…No dr has told me there could be a reason for getting pancreatitis with hypothyroid and how can my blood tests say my thyroid is producing hormones and is low which means high . I’m so confused my gp has no explanation my hair is falling out I don’t eat anything only 3oranges a day and pure fruit juice now I have moderate atrophy on my pancreas and I can’t get into a specialist for 1-2 years ., can h explain what’s really going on

    Reply
  30. Because of PTC, I had a total thyroidectomy two weeks ago and now on Levo. So far I feel strong and as I did before. They are planning radioactive iodine in the future. What should I do after this treatment to restore my metabolic functioning and gut biome?

    Reply
    • Hi Al,

      Restoring your metabolism will have more to do with your dose of thyroid medication than anything else. Improving gut function can be done through diet and supplements.

      Reply
  31. I had RAI about 39 years ago and every year I’m tested for my TSH level which always seems to be in the normal range. My question is even though my thyroid is dead, should the T3 and T4 level be tested as well?

    Reply
    • Hi Janet,

      Yes, absolutely. It’s even more important to test free thyroid hormone levels if you no longer have a thyroid gland.

      Reply
  32. I had RAI treatment nearly 2 years ago, and deeply regret it. My entire life has been turned upside down. Not only can doctors NOT find a thyroid replacement that works for me due to side affects, I’ve lost 70% of my hair and have to wear wig, I’ve gained more weight than ever before in my life, I’m constantly fatigued, in pain, moody, still have a very fast heart rate between 110-130, anxiety (like I’m still hyperthyroid, but I’m not.) So, do your research, make sure RAI treatment is right for you. Doctors made me think it was my only option at the time.

    Reply
  33. So I have graves disease but was only diagnosed because I was actually gaining weight. I am going in for radioactive iodine treatment next week and wanted to ask what the best diet plan is that can stop me gaining more weight and help me to reduce my bmi

    Reply
    • Hi Lyndi,

      Unfortunately, the best way to prevent weight gain after RAI is to go into the procedure at a normal weight. The average thyroid patient gains about 15 to 20 pounds after RAI/thyroidectomy and this weight is more pronounced if the thyroid patient was overweight prior to the procedure. If possible, it’s always ideal to try and normalize your weight BEFORE the procedure.

      In regards to diets that can help, please see this article: https://www.restartmed.com/hypothyroidism-diet/

      Pretty much any of the diets listed there will be at least somewhat beneficial.

      Reply
  34. Hi Dr. Childs,
    I have been asked to transport a friend who is having Radioactive Iodine treatment both the day of and a couple days later for her followup scan. Is there anything I can do to protect myself as I am driving her. The trip will be about 45 minutes each way.
    Thank you
    Anna Thomas

    Reply
  35. Hello Dr .Child
    I had my RAI 3weeks ago and they did not gave me a pros and con what to expect after. But, I am having a lots of rashes all over my neck and scalp, it got swollen and bumps. Its been a week after
    my RAI, i have rough horsey voice also for a month . What will you really expect after your RAI, side effects
    My endocrinologist said he never heard someone like that after RAI, but i asked my cousin who is a family doctor back home that you will expect that will happened to you.

    Thank you

    Reply
    • Hi Mary,

      I would say many of your symptoms are unusual but this article highlights some of the routine side effects that may be experienced.

      Reply
  36. About 25 years ago they killed my thyroid with radioactive iodine. Before they killed my thyroid and before it was even diagnosed the heat affected me something terrible and would just take my breath away. Now I can’t stand the heat and I used to go to the beach all the time. It’s not just that I can’t stand the heat I get overheated so fast that I have to get in the AC or I feel like I’m gonna pass out. The cold also affects me if it’s too cold I really get cold but thinking back I pretty much think I was always like that with cold. All my life my hair was thin and fine. Now the top of my hair is thick and fine and the back of my hair is thick and curly it has a little bit of wire feeling to it. Everybody tells me that my thyroid being killed should have nothing to do with the heat affecting me like it does. I know it Hass to be because it started affecting me as soon as I Started losing weight and before I had been diagnosed. Have you ever heard of this before? It’s drastically changed my life. I live in Florida and I cannot stand enjoy the outdoors anymore because of the heat. If you have heard of this before is there a natural vitamin or something that will help me control the heat in my body?

    Reply
    • Hi Diane,

      Both hyperthyroidism and hypothyroidism cause intolerance to heat and cold respectively, so that isn’t uncommon but what is uncommon is to experience those symptoms after RAI. The only other condition that causes heat intolerance that comes to mind is menopause and perimenopause. If you haven’t already then you would probably want to make sure it isn’t your other hormones causing these issues.

      Reply
  37. Hello Dr. CHILDS,

    I HAD MY RAI LAST SEPTEMBER 12, NOW IM ALREADY 2 MONTHS AFYER MY RAI.

    MY TSH AS OF NOW IS-
    2.48
    MY FT4- 13.99

    MY QUESTION IS AM I ABLE TO WORK ABROAD WITH THIS. OR IT WILL BE GIVE ME PROBLEM? MY DOCTORS ADVICE ME TO STAY UNTIL MARCH OR APRIL FOR FURTHER CHECK UP..

    Reply
    • Hi Joan,

      It’s probably a good idea to stay close to your doctor until your dose of thyroid medication is optimized. It probably won’t be an issue if you left but you wouldn’t want to find yourself in a situation where you are unable to get your thyroid medication and your symptoms are poorly controlled.

      Reply
    • Hi Sandra,

      You wouldn’t want to use a steroid on it unless you know what it is. I would recommend touching base with your doctor to see if it’s related to your procedure or if it’s caused by something else.

      Reply
      • Hi , I just had ROI treatment done a little over a week ago . I feel horrible. My throat is killing me and outside of my neck is swollen. I can barely eat . I don’t have another drs appointment till after the holidays. My only option for help is the ER which is somewhere I don’t want to go with all the crap a going around. I was being treated for hypothyroidism and graves . Any advice . Thank Sharon

        Reply
        • Hi Sharon,

          The best course of action is to contact the doctor that was responsible for your procedure and let them know about your symptoms. If you are unable to get ahold of them then it may be necessary to go to the ER.

          Reply
  38. I had an RAI about three years ago, due to hyperthyroidism. The symptoms of hyperthyroidism presented themselves very quickly and I was very sick when I had the ablation. I had never been to endocrinology prior and had no idea about thyroid function. I had severe and sudden weight loss along with many other troubling symptoms. So I had the ablation without much research on my own, and now I’m at the highest weight of my life and miserable. I have spoken to my doctor about it but he doesn’t care. He just does my blood work and adjusts my medicine as needed. My weight seems to be of no concern to him as long as my blood work looks okay. So I stopped going. That may not be the best decision, but I was becoming very depressed. The issue now is that I have no refills on the levothyroxine and have not had any blood work in about 2 years. I don’t want to go back to him but no one else will see me without a referral since I’m still considered his patient. I’m hoping I still have some thyroid function based on the fact that he kept lowering my dose of levothyroxine and I can just take your supplements and see some weight loss and feel a bit better.

    Reply
  39. Dr Childs
    I had a thyroid storm in 2021. I developed atrial fib and then CHF. I had RAI in 2022 after my heart seemed to be getting good enough for treatment with RAI. I am currently taking 5 meds for my heart and Levothyroine 100 mg. I have continually gained around 40 – 50 Lbs during this treatment. No amount of dieting and exercise seem to help. I am told by both my cardiologist and endocrinologist to loose weight. It’s becoming very frustrating, as I cannot seem to get answers. I have to have an answer for the weight gain and any answers you may be able to supply would be greatly appreciated.
    Thank You
    Char

    Reply
  40. Hi Dr. Childs,
    I am scheduled for I-131 treatment next month after recently having a total thyroidectomy for thyroid cancer. I was reading online today, that not everyone necessarily needs the radioiodine treatment, but only high risk cases need it. How do you know if you are a high risk case? I had 4 cancerous tumors in my thyroid, and they tested two cancerous lymph nodes in my neck. I thought that meant that the cancer spread, so I needed the I-131 treatment. Does that sound like a high risk case, so should go ahead with the radioiodine treatement? I just want to make sure, so I am not doing the treatment if it is not actually needed.
    thank you!

    Reply

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