You have Graves’ disease and had Radioactive Iodine (RAI) or a Thyroidectomy. Now What?

Did you have thyroidectomy or RAI for Graves' disease but still don't feel well?

Graves’ disease is an autoimmune disease that leads to overactivity of the thyroid gland (hyperthyroidism). I have Hypothyroid Mom readers struggling with hypothyroidism now since treatment for their Graves’ with radioactive iodine (RAI) or thyroidectomy. I welcome Barbara Lougheed, author of the book Tired Thyroid: From Hyper to Hypo to Healing – Breaking the TSH Rule.

Written by Barbara Lougheed

First, you have to figure out what your optimal type and dose of thyroid hormone would be. There are three types of medications: levothyroxine or T4, liothyronine or T3, and natural desiccated thyroid. A normal thyroid gland secretes about 100 mcg of T4 and at least 6 mcg of T3 daily.[1] For this reason, most people feel best when some form of T3 is part of their daily dose. Some Graves’ patients report an increase in their antibodies on desiccated thyroid, so these patients prefer synthetic T4 and T3 combinations. Other patients prefer desiccated thyroid. Finding your optimal dose boils down to trying out different combinations. I combine levothyroxine (generic T4) with desiccated thyroid to give me the T3 and T4 my own gland would have produced.

Second, you may still be dealing with Graves’ antibodies, which is a separate issue from not having any thyroid hormone production. The Graves’ antibodies are responsible for conditions like thyroid eye disease (TED) and disfiguring skin conditions (pretibial myxedema, acropachy). Destroying the thyroid gland may have no effect on the Graves’ antibodies, since white blood cells produce the antibodies, not the thyroid gland. In a few unfortunate patients, RAI may actually increase the antibodies and worsen or induce thyroid eye disease, which can be painful and disfiguring.[2] Smokers are at higher risk for this complication.

Graves’ antibodies tend to decrease over time after a thyroidectomy or anti-thyroid drug therapy. However, antibodies usually increase significantly during the first three months after RAI, then slowly decrease, but levels can still remain above the reference range even after five years.[3] In some patients, as the antibodies regress, their Thyroid Stimulating Hormone (TSH) returns.[4] In fact, the return of TSH in a Graves’ patient on anti-thyroid drugs is a sign that the medication is working. Some Graves’ patients have achieved remission after years of therapy using anti-thyroid drugs combined with levothyroxine (modified block and replace therapy).[5]

Some who underwent RAI treatment suffer from some degree of damage to the stomach, salivary,[6] lacrimal (tear) glands[7] and other organs, because those organs also collect iodine. I did not suffer any severe side effects from the RAI, probably because of the low dose (8 mCi) given to me. Some people are given twice the dose (16 or more mCi), and others have had more than one RAI treatment, because their thyroid glands still produced hormone after the first treatment. I felt terribly hypothyroid 6 weeks after my RAI treatment, but after I’d stabilized on the 88 mcg dose of T4 that was prescribed to me, I don’t remember feeling any differently. However, I was probably hypo to some degree before the RAI. Hypothyroid Graves’ refers to the hypothyroid phase that often precedes the hyperthyroid phase of Graves’.[8]

Patients should take both T4 and T3 to replicate normal thyroid gland output, but the TSH level is not a good indicator of whether a dose is correct. Graves’ patients can have a TSH close to zero even if their T4 and T3 are low and below the reference range. A suppressed TSH usually indicates hyperthyroidism, or high thyroid levels, but Graves’ patients have TSH Receptor antibodies that cause non-stop stimulation of the TSH Receptor; this keeps their TSH suppressed even when T4 and/or T3 levels are dangerously low. In fact, Graves’ patients who’d had RAI reach TSH suppression on much lower T4 doses than thyroid cancer patients who’d had a thyroidectomy, or patients who simply had non-functioning glands.[9] This may be due to Graves’ antibodies that are still present after RAI.

I have no TSH, but I believe this is due to the T3 I take, not active Graves’. TSH drops whenever anyone (not just Graves’ patients) takes any type of thyroid hormone manually, but it does not mean the patient is overmedicated. In fact, because TSH is so sensitive to supplemental thyroid hormone, anyone on T4 with a normal TSH probably has a Free T3 (FT3) level that is lower than that found in healthy people. (FT3 is the blood test that most correlates with symptoms.[10] It is an either or proposition on T4 medication: if TSH is normal, then FT3 must be lower than that found in healthy controls. If FT3 is at a healthy level, then TSH must be lower than normal. Patients cannot have both FT3 and TSH at healthy levels on T4 replacement,[11] and a decision to follow the TSH, especially in a Graves’ patient, leaves the patient undermedicated, sometimes heartbreakingly so. If a Graves’ patient still has active TSH Receptor antibodies (after a thyroidectomy or RAI), then their TSH will remain suppressed or “normal” even though they may have very little thyroid hormone in their body. With no source of thyroid hormone, they can slide into the horrors of myxedema (severe hypothyroid state–person is disabled). Doctors who refuse to prescribe enough thyroid hormone to these patients because of their suppressed or normal TSH have ruined patients’ lives.

Graves' Disease and TSH Receptor Antibodies

About Barbara Lougheed 

Barbara Lougheed from TiredThyroid.com had RAI for Graves’ disease in 1993 and takes T4 with desiccated thyroid. She spent years researching thyroid physiology, looking for her optimal dose. She compiled this research into a book called Tired Thyroid: From Hyper to Hypo to Healing – Breaking the TSH Rule. Topics include treatment options for Graves’ patients, a case study of a Graves’ patient who achieved remission using LDN (low dose naltrexone) and tapazole (an anti-thyroid drug), studies that prove that dosing by TSH is illogical, and that T3 is essential because it enhances an enzyme that converts T4 to T3.

READ NEXT: Understanding the True Cause of Autoimmune Disease

References:

1. Bunevicius, Robertas, et al. “Thyroxine vs thyroxine plus triiodothyronine in treatment of hypothyroidism after thyroidectomy for Graves’ disease.” Endocrine 18.2 (2002): 129-133.

2. Batra, Ruchika, et al. “Post-radioiodine De Novo Onset Graves’ Ophthalmopathy: Case Reports and a Review of the Literature.” Seminars in ophthalmology. No. 0. New York: Informa Healthcare USA, Inc., 2013.

3. Laurberg, Peter, et al. “TSH-receptor autoimmunity in Graves’ disease after therapy with anti-thyroid drugs, surgery, or radioiodine: a 5-year prospective randomized study.” European Journal of Endocrinology 158.1 (2008): 69-75.

4. Kabadi, Udaya M., and Bhartur N. Premachandra. “Serum thyrotropin in Graves’ disease: a more reliable index of circulating thyroid-stimulating immunoglobulin level than thyroid function?” Endocrine Practice 13.6 (2007): 615-619.

5. Laurberg, Peter, et al. “Sustained control of Graves’ hyperthyroidism during long-term low-dose antithyroid drug therapy of patients with severe Graves’ orbitopathy.” Thyroid 21.9 (2011): 951-956.

6. Raza, Hasan, et al. “Quantitative evaluation of salivary gland dysfunction after radioiodine therapy using salivary gland scintigraphy.” Nuclear medicine communications 27.6 (2006): 495-499.

7. Aydogan, F., et al. “Effect of Radioactive Iodine Therapy on Lacrimal Gland Functions in Patients With Hyperthyroidism.” Clinical nuclear medicine (2013).

8. Starrenburg-Razenberg, A. J., et al. “Four patients with hypothyroid Graves’ disease.” Neth J Med 68.4 (2010): 178-80.

9. Burmeister, L. A., et al. “Levothyroxine dose requirements for thyrotropin suppression in the treatment of differentiated thyroid cancer.” The Journal of clinical endocrinology and metabolism 75.2 (1992): 344-350.

10. Baisier, W. V., J. Hertoghe, and W. Eeckhaut. “Thyroid insufficiency. Is TSH measurement the only diagnostic tool?” Journal of Nutritional and Environmental Medicine 10.2 (2000): 105-113.

11. Ito, Mitsuru, et al. “TSH-suppressive doses of levothyroxine are required to achieve preoperative native serum triiodothyronine levels in patients who have undergone total thyroidectomy.” European Journal of Endocrinology 167.3 (2012): 373-378.

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About Dana Trentini

Dana Trentini founded Hypothyroid Mom October 2012 in memory of the unborn baby she lost to hypothyroidism. This is for informational purposes only and should not be considered a substitute for consulting your physician regarding medical advice pertaining to your health. Hypothyroid Mom includes affiliate links including the Amazon Services LLC Associates Program.

Comments

  1. Ivanna Santino says

    I’m 59 years old and female. I was diagnosed a couple of years ago with COPD and I was beyond scared! My lung function test indicated 49% capacity. After having had flu a year ago, the shortness of breath, coughing and chest pains continued even after being treated with antibiotics. I’ve been smoking two packs a day for 36 years. Being born without a sternum caused my ribs to be curled in just one inch away from my spine, resulting to underdeveloped lungs. At age 34 I had surgery and it was fixed. Unfortunately my smoking just caused more damage to my already under developed lungs. The problem was having is that I enjoy smoking and don’t want to give up! Have tried twice before and nearly went crazy and don’t want to go through that again. I saw the fear in my husband and children’s eyes when I told them about my condition then they start to find solution on their own to help my condition.I am an 59 now who was diagnose COPD emphysema which I know was from my years of smoking. I started smoking in school when smoking was socially acceptable. I remember when smoking was permitted in hospitals. It was not known then how dangerous cigarettes were for us, and it seemed everybody smoked but i was able to get rid of my COPD lung condition through the help of total cure herbal foundation my husband bought, totalcureherbsfoundation .c om has the right herbal formula to help you get rid and repair any lung conditions and cure you totally with their natural organic herbs,it class products at affordable prices. Purchase these medicines and get the generic medicines delivered in USA, UK & Australia,I wish anybody who starts smoking at a young age would realize what will eventually happen to their bodies if they continue that vile habit throughout their life.

  2. Hi Dana,
    I’m an old-timer Radioactive Iodine recipient. Both my sister and I had RAI. I had mine more than 25 years ago, and my older sister had it three years before me. I was very hyperthyroid and lost 30 pounds between Thanksgiving and Christmas the year it hit me. I refuse to go back to the endocrinologist who ordered me to have the RAI for a couple of reasons: 1) his office was three hours away, and there weren’t any others closer to our rural town. 2) He had a terrible bed-side manner. His last words to me before I left was, “Good luck losing weight.” Unfortunately, he was right. If I had it to do over, I would not have gotten the RAI, but there’s not much I can do about it now. I’m hoping there are better alternatives to RAI should my daughters inherit my condition. I got pregnant shortly after the RAI, and she is now 25 years old. She’s 12 years younger than the twins of my first pregnancy. So far, all three daughters (ages 25 – 37) haven’t shown too much of a thyroid problem. The one with our grandchildren had some difficulty conceiving eight years ago, and told me that she did have a slight thyroid problem. She just had her second child in the spring of 2019 without too much problem though. I worry because my twins are just about at the age I was when I developed the thyroid problem. All three are slim, active and beautiful. I’ve been having yearly, and sometimes twice a year labs to monitor my thyroid. I’ve been on 150 – 175 mcg for most of the past 15 years. I don’t remember what dose I took shortly after the RAI though or how much RAI I had. In those 25 years, I have gained back more than 125 pounds. It is very difficult to not gain weight and even harder to lose the weight. My labs usually show a normal T4 and a low TSH. My doctor(s) usually reduce my dose to 150 mcg and I eventually start to feeling cold when others are hot (I wish I had hot flashes), sluggish, tired, etc. so I ask for a higher dose. My doctors don’t seem to want to put me on more than a 150 mcg. If I am able to get 175 mcg, I actually feel pretty good and can lose the weight easier. I have even broke a 150 mcg into fourths and have taken 1/4 with the 150 for several months due to the doctors reducing my dose and I didn’t feel that I was in too bad of shape. My last recent lab showed that my T4 was 1.59 (high) and my TSH was 0.110 (low). So my doctor said that I am “getting too much thyroid medicine,” even though I’d only been taking the “prescribed” 150 mcg for the past several months prior to the lab. I also feel chilled, and sluggish and am gaining weight daily even without eating very much. I can’t believe that I’m getting too much. Labs from six months earlier were not bad with a T4 (1.78) and a low TSH (0.186). Considering that I had the RAI, and now only have a very tiny, non-functioning thyroid, should I be insisting to be given a higher dose or continue breaking the 150 mcg into four pieces and taking that one or more times a week? I can’t understand how I can be getting “too much medicine” with 150 mcg a day. Overall, my vitals are pretty good. I am on two different blood pressure medicines (Losartan HTCZ and Metoprolol and that seems to work for me, and my cholesterol is 165, and HDL 51 and is much better now than it was 10 years ago. My situation isn’t just a common thyroid problem. Unlike most people, I don’t have a functioning thyroid.

  3. Afshan Sami says

    I am hypothyroidism but of late I can’t take my thyroid meds. I feel extremely dizzy and the days I don’t take them I am fine.
    My TSH is 30.since I haven’t been taking meds

  4. Jennifer Yabo says

    I had a total thyroidectomy last 2015. And in 2017 I had my RAI. I thought everything is well after taking all of this process. On 2018 Feb that was exactly 1 year after having RAI I got pregnant and delivered a healthy baby boy after 9months and now he is 1 yr and 3 mos in counting..I thought there was a less change if getting pregnant after my RAI as what they have discussed to me but it turned out to be a miracle😁.
    Now, I went back to work after 2 years from RAI and I only felt weak when I don’t take my meds. My struggle is my muscle weakness and my TED because my eyes can’t no longer functions well without my glasses. But it’s fine at least I can still see 😊 no big deal.
    I want to exercise but I don’t have time because of family and work.
    But I am partly happy and contented. Because despite of having this disease, I am proud to say that I pay my own bills, raises 4 children and was able to lived life most especially 😁
    Let’s just be thankful and do not remember to take ur meds and good diet.
    Wish us all Good luck and God bless!!!

  5. Jessica Biser says

    At 36 i was Diagnosed with Graves disease. Can i say 2 years of hell. The ups the downs, non stop crying panick attacks. To the point i thought i was going crazy. I did get my thyoird completely taken out july 7th 2019. I no longer feel crazy, but i still have ups and down and i feel tired a lot (i do have a 3 year old) but i feel like im dragging and weak at times. And i still dont always feel like myself. I get fog brain too. Is there anyone or anything that can help??????? I’ll finally get to see my endocrinologist this February 2020.

    • I had graves disease and a goiter. Boy was that a trip. I had a total thyroidectomy on March of 2019. I have up and down days as well. I totally felt helpless and crazy because no one understood what was going on and neither did I. I still feel like that after the fact but according to my levels, I’m in the level that i need to be in but my symptoms say other wise. It’s very frustrating as I am always tired and brain fog like you wouldn’t believe. After surgery, both my hands and legs went numb and is still is, they blamed it on my calcium. I was taking 4 tums (1000mg) a day plus calcium pills about 4 months and it never went away. I still suffer from a variety of symptoms and it is not being handle by my endocrinologist because they refuse to believe that I have symptoms after surgery. If I knew thos before hand I would’ve just left it and dealt with it since I’m still dealing with it. I am on 112mg of levothyroxine by the way. Good luck and I hope your doctor helps you out! Prayers

  6. Jerry Atson says

    we were all scared we might lost him due to his condition, as he had been his brother’s caregiver a few years earlier for the same disease before he past. doctor recommend nuatural treatment from total cure herbal foundation for his ALS we have no choice to give a try on natural organic treatment ,this herbal cure has effectively reverse my father condition ,losing his balance which led to stumbling and falling stop after the completing the herbal supplement which include his weakness in his right arm and his speech, home remedies from totalcureherbsfoundation com is the best although their service is a little bit expensive but it worth it, they save lives.

  7. felix lina says

    I am not sure of the cause of COPD emphysema in my case. I smoked pack a day for 12 or 13 years, but quit 40 years ago. I have been an outdoor person all my adult life. Coughing started last summer producing thick mucus, greenish tint to clear. I tried prednisone and antibiotics, but no change. X-rays are negative, heart lungs and blood and serum chemistries all are normal. I have lung calcification from childhood bout with histoplasmosis. I am 75 years old and retired.My current doctor directed me to totalcureherbalfoundation @g mail. com which I purchase the COPD herbal remedies from them ,they are located in Johannesburg, the herbal treatment has effectively reduce all my symptoms totally, am waiting to complete the 15 weeks usage because they guaranteed me total cure.

  8. Gary Madison says

    My husband was diagnosed with MND ALS (amyotrophic lateral sclerosis) when he was 69 years old 6 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical center was non-existent and if it were not for totalcureherbsfoundation .c om and the sensitive cure of their herbal formula he would have been not been alive today,there was significant improvement in the first 4 weeks of usage that gave us hope that he will be alive,His doctor put him on riluzole, letting us know there was no cure until we gave try on total cure herbal supplement that cure him totally from this disease after 15 weeks of his usage. There is nothing positive about cure ALS condition except for their herbal treatment .

  9. HI Dana,

    After diagnosis of Graves disease, I chose RAI treatment and have not been happy with results. After two years I am 25 pounds heavier, have swelling legs and aching knees all the time, bouts of hair loss, and deteriorated tear glands that could seriously affect my eyesight in later years (I am 63). My latest labs show THS at a scary 9.33 with my T4 “in range” for a correctly functioning thyroid. My doctor’s response to this … a higher dose of Levothyroxin…75mcg per day!! That seems ridiculously high…I am scared, especially since I already take high blood pressure meds…ideas? Please help!!

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