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

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

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.

Barbara has generously offered her book to 3 lucky readers! Don’t miss the GIVEAWAY below.

Written by Barbara Lougheed, founder of Tired Thyroid

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. Bunevicius, Robertas, et al. “Thyroxine vs thyroxine plus triiodothyronine in treatment of hypothyroidism after thyroidectomy for Graves’ disease.” Endocrine 18.2 (2002): 129-133] 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. 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] 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. 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] In some patients, as the antibodies regress, their Thyroid Stimulating Hormone (TSH) returns.[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] 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. 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]

Some who underwent RAI treatment suffer from some degree of damage to the stomach, salivary,[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] lacrimal (tear) glands[7. Aydogan, F., et al. “Effect of Radioactive Iodine Therapy on Lacrimal Gland Functions in Patients With Hyperthyroidism.” Clinical nuclear medicine (2013)] 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. Starrenburg-Razenberg, A. J., et al. “Four patients with hypothyroid Graves’ disease.” Neth J Med 68.4 (2010): 178-80]

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. 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] 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. 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]) 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. 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] 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

About Barbara Lougheed 

Barbara Lougheed 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. She writes the TiredThyroid.com website and blog for all hypothyroid patients.

References:

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About Dana Trentini

I founded Hypothyroid Mom October 2012 in memory of the unborn baby I lost to hypothyroidism. Hypothyroid Mom 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 to favorite resources including the Amazon Services LLC Associates Program. Connect with me on Google+

Comments

  1. Graves ’ Disease is an immune system disease that influences the thyroid organ. Graves ’ Disease Herbal Treatment that can help you treat the side effects and carry on with a moderately ordinary life. Herbal Supplements play a vital role in the treatment of grave sicknesses.

  2. Donna Clark says:

    Thank you so much for this information. I have lived through hell with my 1st hyper, RAI, then hypo, then Graves, 4 wall orbit operation, and now they are lower my synthyroid going from .25mcg to now ,112. and now having hyper symptoms again. No one, but one has explained this as clearly as you. They always act like, It’s no big deal. BUT it’s not their body. Thank you

  3. Dyanna Moore says:

    I was dx w graves in 2005 bc my levels were SO high and even after medication to lower them, my levels would rise again..so RAI was done..now my levels r hypo..I can barely function most days having to carry myself to get moving..the doctors and I have seen five different endos hoping just one would listen to ME, they raise and lower my Armour constantly bc my tsh t3 and t4 will never be in normal limits at the same time..They r destroying my life, emotionally physically mentally as well as my marriage bc my husband just doesnt understand! I dont know what else to do except quit taking thyroid medicine all together and hope for a better outcome!

    • Hi Dyanna and all who are here to learn!
      My RAI was in 1992 for Graves Disease so I have done all the different options of thyroid meds. I have “fired” Drs. for their lack of knowledge and testing!
      So to keep this short, don’t quit your meds!
      Okay, I like others started out on T4 meds ( Synthyroid and all her generic sisters, then went to T4 with Cytomel, then T4 and T3 compounded, then I went to Desiccated Nature-Throid, and finally 20yrs Later. Levothyroxine and WP-thyroid combo and its working. Not perfect but the best so far. I see an Integrative Medicine, Dr. Stephanie Gray, I eat NO GRAINS and Whole Food Plant Based Vegan Lifestyle which has helped the most.
      Hope this helps all of you hang in there, keep balanced, not to much caffeine. Gluten and caffeine cause my “Wild Explosions” aka no patience! My husband knows when I’ve been “glutenized”!!
      Oh, and I have about half my thyroid left and take 50 mcg Levothyroxine + 48.75 WP-Throid. = 125 mcg Total. No other Medications and 59 yrs young! I feel my best when I eat at least 75 to 100% raw food. “Let Food Be Thy Medicine and Medicine Be Thy Food” ~Hippocrates~.

  4. My Dr is decreasing my synyhroid based on my Tsh and I know I’m hypo (and getting worse) with each decrease !! Dx of Graves’ disease 3 months later RAI .. fast forward 1 yr…. 80 lbs plus , elevated cholesterol, pre diabetes, muscle swelling, Fatigue, severe joint pain (right wrist) calf cramps and hair falling out . I felt “ better” two dose changes ago when my were almost normal but my Tsh was undectable then and still is !!!

    • To Mary,
      Functional or Integrative Medicine Drs. is who you need to see. Fire this Doctor.
      RLC labs can help you find Doctors and Pharmacy in your area so google them.
      Good Luck!
      Karen

  5. Amanda W Breslin says:

    I had RAI in 2009 and have had constant struggles with maintaining normal levels of T3 and T4 ever since, despite multiple Doctors and multiple Rx changes (Synthroid .112mg, most recently, and levels became hypo). Every Dr visit would result in months of hormonal craziness. I finally, a few months ago, after tremendous research, decided to take matters into my own hands and stop my medication all together. I replaced it with cbd oil and I have not felt this good since before my diagnosis! I had no idea just how badly I really felt on the medication until now. I have not had tremors, racing heart beat or any of the other symptoms pre RAI. My marriage, Career and life have been in shambles, and failed, despite my best efforts, because of the lack of proper treatment for this disease. I finally feel like a normal Human Being again! If anyone would like more information, please reach out. I am happy to share my research and product information.

    • Please send me your research. I had RAI after my heart was pounding but I was really tired. Went to Endo (unbeknownst to me I was going down a long lonely road) My fingers have been puffy before and continue for 21 years with puffiness in my body. Past 4 years my heart has been pounding and feel very spacey. Feels like I am not getting oxygen to the brain. Told I had Graves but I think I had both bc I didn’t have the symptoms like Graves. Was on Synthroid only from 1997 to 2009 when I did my research about T3. I don’t go to Endos – they are in the dark ages. I read as much as I can but I feel like it is getting worse also the tests say I am fine.

  6. A lot of people look for Herbal Treatment for Graves’ Disease. It has been seen that natural treatments has helped a lot of people in curing the symptoms and restoring their health conditions. The Graves’ Disease Treatment is directed towards controlling thyroid secretion. ”Vegeton” herbal product is a tested product by Herbs Solutions By Nature. It is not only 100 % safe but is also free from any kind of side effects as it is made of natural herbs.

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