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.
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.
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.
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.
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.
Do you need an ultrasound scan on your thyroid every year?
I too had RAI in 1995. I started out on 150 mcg, got reduced to 125 mcg, then reduced to 112 mcg, then 100 mcg and am now at 88 mcg.. I can’t lose any weight and put on a couple ounces almost daily until I gain yet another lb. i really don’t overeat. Most of my friends eat much more than I do. In addition, I’m so constipated I almost can’t stand it anymore and I’m just so tired. My TSH is always very low. They refuse to up my dose and I don’t know what else to do. I guess all I can do is complain. My doc says weight gain is due to getting older and eating too many carbs. I give up. Good luck to you!
you need pig thyroid. your medicine has only 1 of the 4 hormones your thyroid used to make. that is T4 which requires your liver to convert to T3. If your liver can’t do it then you need to take T3.
Find a compounding pharmacy in your area and call them and ask what drs are in your area that prescribe natural thyroid. that is what I did. Got my life back. I have the same low thyroid symptoms you have but on a much more manageable level. Natural thyroid gave me my life back. Damned endocrinologists refuse to prescribe it and God only knows why. they want us to be miserable?
Karen, I had RAI in 1995 for Graves Disease. I don’t have a functioning thyroid gland. Find another endocrinologist that can help you. I have been on 150 mg Synthroid for many years fluctuating with 175.mg or alternating the two. My endocrinologist physician is more concerned about how I’m feeling. Every patient is different. My TSH remains suppressed due to the medication and the tests that he orders are for the Free T4.
Wow … only 150 mcg a day? I am surprised you can function. I had RAI 30 years ago and have been on 90 mg daily since … I switched from synthetic to dessicated thyroid- Abbott’s NP thyroid about 15 years ago. I have no other heath issues and have never had weight issues either.
It is difficult to fathom how your TSH/T3/T4 levels are right on that minimal of a dose. I am 61 and other than a low Vit D one time, all my extensive blood tests are excellent.
Something does not sound right. Have you always used the same phlebotomist? You said you still had a bit of thyroid gland? I would switch doctors. Do you see an endocrinologist? If nothing else switch to a natural thyroid medication.
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
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!!!
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
you need pig thyroid. your medicine has only 1 of the 4 hormones your thyroid used to make. that is T4 which requires your liver to convert to T3. If your liver can’t do it then you need to take T3.
Find a compounding pharmacy in your area and call them and ask what drs are in your area that prescribe natural thyroid. that is what I did. Got my life back. I have the same low thyroid symptoms you have but on a much more manageable level. Natural thyroid gave me my life back. Damned endocrinologists refuse to prescribe it and God only knows why. they want us to be miserable?
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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.
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 .
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!!
maybe you need pig thyroid. your medicine has only 1 of the 4 hormones your thyroid used to make. that is T4 which requires your liver to convert to T3. If your liver can’t do it then you need to take T3.
Find a compounding pharmacy in your area and call them and ask what drs are in your area that prescribe natural thyroid. that is what I did. Got my life back. I have the same low thyroid symptoms you have but on a much more manageable level. Natural thyroid gave me my life back. Damned endocrinologists refuse to prescribe it and God only knows why. they want us to be miserable?
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.
Have you tried selenium
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
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
Get another opinion about your thyroid. Here are resources that I put together to help my Hypothyroid Mom readers locate good doctors:
https://hypothyroidmom.com/30-online-resources-to-find-a-good-thyroid-doctor/
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
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.😪
I am just seeing this years later. I was going to say take iodine? just iodine.
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.
What do you think of taking 200 mg of selenium everyday
Hi Anita,
This is Dana Trentini, the founder of Hypothyroid Mom. I personally take 200 mcg of selenium every day. I actually plan to write an article about this topic after reading a recent published study about selenium and thyroid disease that appeared in the International Journal of Endocrinology. According to the researchers, “The literature suggests that selenium supplementation of patients with autoimmune thyroiditis is associated with a reduction in antithyroperoxidase antibody levels, improved thyroid ultrasound features, and improved quality of life. Selenium supplementation in Graves’ orbitopathy is associated with an improvement of quality of life and eye involvement, as well as delayed progression of ocular disorders.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5307254/
This is the selenium that I personally take:
https://www.purerxo.com/hypothyroidmom/rxo/products/product_details.asp?ProductsID=177
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
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.
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
How are you now?
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.
Hi Sandy, Levothyroxine contains T4 hormone only. While this is the most popular thyroid medication, it doesn’t work for us all. Here is my article with the thyroid medication alternatives to know about.
https://hypothyroidmom.com/which-is-the-best-thyroid-drug-for-hypothyroidism/
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.
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
Also should I just ex pk erimate and cut my meds down or up and see if I get better?
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?
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
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.
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.
can you tell me the names of the herbs yall take
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
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~.
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
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.