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.

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

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

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. Hi everyone, just looking for some advice…I was diagnosed with graves disease and had RAI in 2000 and have been mainly on levothyroxine since. I tried taking the brand name drug Synthroid first then had to switch to levothyroxine due to insurance coverage. I’ve also tried compound meds which seemed to make things worse. Point being its 18 years after RAI and I’m still having to do labs every 6 weeks adjusting dosages each time. I’m constantly going from one extreme to the other, I’m either extremely hypo or extremely hyper and I dont know which is worse! Please help! On my last dr visit my labs showed I was hypo so they adjusted my dose of levothyroxine from 125mcg to 100mcg and now I’m hyper again. I’m losing all my hair when it was just starting to fill out again. I just want to feel normal and not go bald, is this even possible??? Based on the weight in kgx1.5 calculation I should be on 108.9 so I believe 110mcg would be the closest dose correct? I dont know what to do I’ve tried so many different doctors and meds and nothing seems to work…any advice at all you guys have would be greatly appreciated, thank you.

  2. Lannie Randall says:

    Hi I had my thyroid and goiter removed in 1995 or so. I went through a thyroid Storm and only had 6hours to live. I was told I had the largest goiter they had ever seen.
    I was on meds after surgery for 2 to 3 years, I got pregnant also after I had my baby I stopped my meds. Was tired of everything plus I had put on a lot of weight. I found out if I stayed hyper I could lose the weight
    I am 54 now and things are going bad still off meds but have been told that I am playing Russian roulette with my life. My adrenaline gland is working double time. I am tired all the time but fight it. I fell at work now I’m disabled from neck fission that didn’t work
    I have lost my short term memory and forgetting everything along with my voice is getting bad. can hardly be heard. Now my eyes are bad don’t know what is going on. Both eyes are swollen and I have white discharge that I have to remove 6 to 8 times day, I also am noticing small air bubbles in the lower part of the the eyes my color vision is getting worse to. I have to wear magnifying glass to read.
    I am scared because my eye doctor told me 10 years ago I would go blind because my whites had been stretched during my thyroid Storm and were now moving and they could not stop it. Well I thought they were wrong because nothing happened for so long. Now after having amoina 2 years ago my eyes have been swollen was told that it was allergies now I don’t think so. my upper and lower eye lids are swollen so bad I look like my eyes are closed. My whole body hurts and I’m tired even more than normal, I am so depressed I do not leave my house I hate the way I look. I want to sleep but when I do I will swell up even more. I have lost my eyes, voice and now my mussels in my arms and legs becoming very weak.
    I have to go to a doctor but which one. my regular doctor keeps saying it’s allergies and puts me on meds for it and it doesn’t work so I stopped going anyone out there that could help me with this please let me know thanks

  3. hope ontiberos says:

    I am having leg cramps , hair loss , joints hurt. constipated and dr says my levels are fine what should I do get another doctor? I had an RAI, done in 2015

  4. Michelle says:

    Hi Dana
    Thank you for your site. Can you provide any guidance or point in the right direction how to support the heart when you are on Synthroid only? I am 15 years post RAI due to Graves.. and ever since hitting Peri my levels have been the most unstable ever. I’m swinging border hyper to border hypo every few months. As soon as I feel the racing heart or palps I know something is up. My doctor today basically called me crazy and said it was all due to my anxiety. Of course because I have anxiety (due to my new life) I am now labeled and my endo blames this on all my symptoms. So I am desperately seeking any feedback how to better help myself. Thank you! Michelle

  5. Heather says:

    I haven’t been diagnosed yet, but I’m pretty sure I have hyperthyroidism. I’m filled with dread. Antibiotics and INSAIDS started this mess. I lost thirty percent of my hair to it. I have a bacterial infection from it. And now I think I have hyperthyroidism. All roads lead to more hair loss, and if I get RAI then I’m hypo. Fat and bald. I don’t know what to do. I’m so depressed.😪

  6. Hi Amanda, I’m happy you’ve found something that works for you. I do not permit posting ads at Hypothyroid Mom.

    • Dana
      Had RAI for Graves 25 years ago. On Synthroud ever since. Just had serious compression fractures if the spine for a minor gardening activity. Had Dexa scan and have serious osteoporosis now. Literature I am reading on this indicates that synthroud and its generics cause osteoporosis! Looking for new options now. Very shocking and demoralizing to know that now my spine is ruined due to synthroid
      Any info on this?

      • I was diagnosed with Graves in 2017, had RAI, gained 50 lbs right befor my sons wedding. It’s been a year of lab tests…actually had a bone scan done because I was told that since I’m on Synthroid they wanted to check my bone density. Oh, btw I just turned 56. Was informed that I needed to start taking 4-5000u of Vit. D, otherwise if I fell in the next 5 years, I’d break a hip. Since I don’t want that, my physician ran every blood test possible,on me. Checked my electrolytes too. Other then the Vit. D issue, I take that along with my Synthroid, have lost all the weight and basically feel great. But, anytime I start to notice any weight gain and I know I’m eating healthy, I ask my doctor to draw my blood to check thyroid levels…T3, T4 and THS.

  7. colleen pfeifer says:

    Amanda how do I get in touch with you concerning your research and product info? Had rai 3 years ago for Graves, and I’m a mess! Colleen Pfeifer

  8. Kimberly Angelotti says:

    I thought we could die without thyroid medication?..after Rai or thyroidectomy..is that not true?

    • Hi Kimberly, There are life-threatening health conditions like heart disease and diabetes that can happen with hypothyroidism that is not adequately treated with thyroid medication. If a person is missing their thyroid due to RAI or thyroidectomy then they have no thyroid to produce thyroid hormones necessary for life and thyroid hormone replacement medication is necessary. Good to have you at Hypothyroid Mom.

  9. Betsy mccann says:

    I had rai treatment in 2008 I have graves disease I thought when I had the treatment the graves disease would go but I now have celiac disease I am on 100mcrg of levothyroxine I have recently had recurring problems with my blood high white cells very small red cells and borderline platelets listening to one consultant speaking to another said the lady has graves disease being controlled by levothyroxine I was on yearly blood tests now on 3 monthly

  10. I had rain about 15 yrs ago.It has been a struggle to feel well ,I take 137 mcg per day of levothyroxin ,and get very sensitive,and emotional to what people say, and feel anxiety. Can anyone help with ideas.

  11. Jean Briggs says:

    Any advice would be greatly appreciated. When I am home and not working I lay in bed.
    I thought I was depressed but when these palpitations started I know it is my thyroid. Getting my Dr to understand is like operating on myself. Just doesn’t work.

    • Karen S says:

      Iam in the same boat it seems I had graves or still do I had the iodine treatment and still to this day they say my thyroid levels are Normal I have gains over 80 pds. Iam tired all the time. Sleep all the time. Bloated all the time. Nothing works it seems I go to dr. they say everything is fine. I am looking like duh no its not. Iam not fine. I am getting brain fog. I thought about quitting my sythroyid medinic At once I did the other brand which was a lot higher I cant remember the name of it. And was on it for about 6 months . it was even worse. Iam thinking about getting off all meds. And see what happens. I looked into vitatim’s but don’t know what to even look for. I would love for anyone to answer or help me with my problem. iam sick of going to doctors and they tell u to push away from table. and get more excerise. grrrrr please email me

  12. Jean Briggs says:

    Also should I just ex pk erimate and cut my meds down or up and see if I get better?

  13. Jean Briggs says:

    Hi,
    I had Graves disease diagnosed in 96 or 1998 can’t remember. Anyway I then received RAI treatment and have been on Levothyroxin 100 mcg for years. This past few years I have gotten huge bags under my eyes right on my upper check bones which I am very insecure about. Looks like I been on a 6 month binge and I don’t even drink. My GP tells me my levels are fine but now this past week I started having heart palpitations. I have felt awful no energy ,cranky, just lazy and do not know what to do. Can this puffiness under my eyes be caused by my graves diesease?

  14. Wow thank you! I’m 62 and had rai treatment for Graves 40 years ago. Like you I’ve separately tried synthesis 1.25 most of my years. Also armour (didn’t work) and levothyroxine €worked 3 months. Liothyronine ,
    This past yr I’ve had 35 more pofunds gained plus other hypo symptoms. That makes 75 lbs overweight. Ycch!
    I will try combo w my doctor like you.
    Also am trying natural things to help. Like oils walnuts and foods.
    Thanks again
    Susan

  15. 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.

  16. Alexandra Cuthbert says:

    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.

  17. 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

  18. 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~.

  19. 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

  20. Bernard Blatte says:

    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.

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