Graves Disease – My Story of Hyperthyroidism
In January of 2002, I was diagnosed with Graves disease, a form of hyperthyroidism. Graves is the most common form of hyperthyroidism. The disease happens when your immune system mistakenly attacks your thyroid gland causing it to overproduce the hormone thyroxine.
Some of the symptoms that occur when you have Graves disease are:
- Difficulty sleeping
- A rapid or irregular heartbeat
- A fine tremor of your hands or fingers
- An increase in perspiration
- Sensitivity to heat
- Weight loss, despite normal food intake
- Brittle hair
- Enlargement of your thyroid gland (goiter)
- Light menstrual periods
- Frequent bowel movements
When I was diagnosed, I had no idea anything was wrong with me. In hindsight, I did notice that I was not gaining weight in spite of my one dozen cookie consumption daily. I just thought I had one hell of a sweet tooth and since I was running and coaching field hockey at the time, I really didn’t think twice about it. I figured the running and coaching was burning off everything I was eating. Apparently, I needed a lesson in calorie consumption vs. weight gain.
In December of 2001, I had woken up with extreme back pain – in fact, I almost couldn’t get out of bed–in fact, I rolled out of bed onto the floor. In December 2001, I was 22 years old, so there was really no reason for me to be in that much pain. I was petrified as I had never been paralyzed like that. So I called my doctor’s office to see if I could get in to see the doctor.
My internist didn’t have any appointments, so I ended up going to see one of her colleagues who couldn’t find anything the matter with me. I really think this back pain problem was the beginning signs of the Graves disease. They took my blood that day and noticed that I had a large amount of sugar in my urine. This was easy to explain because I was eating 1 dozen cookies a day. So my doctor told me that I would have to come back to have a blood test done for diabetes. I loved my cookies too much and didn’t want to be a diabetic, so I avoided the test for a number of weeks. When I finally went to take it, they found that I wasn’t diabetic. At the time, I wasn’t tested for thyroid issues at all.
In early January of 2002, I went for a routine physical examination at Planned Parenthood to get birth control. Upon examination of my lymph nodes and neck, the nurse practitioner at Planned Parenthood said, “Oh my God! What is the matter with you?” as she touched my thyroid (which I didn’t know was my thyroid at the time). And I replied, “Well, lots of things are wrong with me! Why do you ask?” She said, “Your thyroid is the size of a baseball.” Much to my puzzlement, I responded, “Okay. Is that a bad thing?” She replied, “Yes! That’s a bad thing! You need to go see your doctor ASAP!”
So I went to my doctor afterwards. Ironically, I was leaving January 31 for Europe for 3 months.
Sure enough, I visited my doctor, my blood was taken and I was told that I needed to see an endocrinologist (a doctor that specializes in the endocrine system and deals primarily with patients who have thyroid disorders, like Graves disease, and diabetes).
I first saw Dr. Mitchell S. Hamburg at St. Luke’s Hospital in Kansas City, MO. Since it is difficult to find endocrinologists, I thought I would include his address herein:
Saint Luke’s Internal Medicine
4321 Washington St Ste 3000
Kansas City, MO
Dr. Hamburg diagnosed my condition as Graves disease. He mentioned there were options, like anti-thyroid drugs for two years and then we would proceed with RAI (Radioactive Iodine). As the years went by, I decided I would change doctors because Hamburg’s bedside manner was not where I needed it to be. Sure I was just another patient, but I was terrified to have RAI. In hindsight, though, I believe Dr. Hamburg was one of the better endocrinologists I saw in my Graves disease journey.
In about 2004, I started to see, Dr.Jeffrey D. Kallsen at St. Luke’s Hospital in Overland Park, KS.
12330 Metcalf Ave
Saint Luke’s South Primary Care Suite 400
Overland Park, KS 66213
He experimented more with different doses of Methimazole to fight the Graves disease, and finally said he thought I should do Radioactive Iodine to rid myself of the Graves disease.
However, I had a gut feeling not to do RAI (Radioactive Iodine) and have always felt I would achieve remission from Graves disease, s decided to change my doctor to someone else.
My thyroid started out as the size of a baseball and reduced to normal size in 6 years. I think if I had done RAI from the get-go I would not have had the opportunity to see the reduction in size. I am on a Graves Disease Yahoo! Group list serve and I learned the following from a person that has had RAI. It just scares the heck out of me. I had asked her if she had to stay away from her family for a period of time and this was her response:
“For days depending on how much the RAI dosage is given to you. The nurse will tell you how long you are to stay away from people & pets. I work for the post office as a letter carrier and I pretty much let everyone know about RAI and to stay away from me. You need to use paper plates and cups so that you can throw them away in separate garage can. After 2 days of brushing your teeth-throw the toothbrush away. Wash the bedsheets & towels after using right away. Sleep alone. You can have pets but can’t hold or hug them at all. I had to stay away from my hubby & everyone for 7 days due high dosage of radiation, but I talked to people on my route (keeping myself far from the person). Had to use the upstairs bath alone (clean the toliet seat with bleach everytime I use). No fun at all but time goes by fast.”
OH MY LORD!! That is insane in my opinion. It scares the heck out of me that I cannot be around anyone for 2-7 days, but I can be around myself?! I also don’t get undertstand how you are supposed to believe that the RAI will not affect any other organs in your body? I mean the thyroid IS connected to other organs and you are swallowing the RAI, so why wouldn’t it go to other areas of the body?
Elaine Moore, the author of Graves Disease Book, told me the following:
“I’ve known people who have been on methimazole for more than 10 years although most people who are avoiding environmental triggers will receive remission within 8 years on meds. Studies show that long-term low dose ATD use is associated with the highest rate of permanent remission.”
Which I find highly encouraging.
I also have been looking into Iodine therapy, and have included my communication about Iodrol below:
— I wrote:
What do you think of Iodrol?
Sent: Wed, 12 Mar 2008 4:18 am
Subject: Re: what do you think of iodrol?
I wouldn’t use it for Graves disease. People with GD
are particularly sensitive to iodine. In general,
excess dietary iodine triggers autoimmune thyroid
disease, and most of us get about 10 times more iodine
than we need. The idea with methimazole and other ATDs
is that they block iodine absorption in the gut. This
reduces the amount of thyroid hormone the gland can
produce. You defeat the purpose here if you add more
iodine. Best, Elaine
From: Guy Abraham
To: Jennifer Dean
Sent: Wed, 12 Mar 2008 6:22 pm
Subject: RE: what do you think of Iodoral?
Dear Jenny: Thank you for sharing with me and Dr. Abraham Elaine Moore’s opinion about Iodoral.
The following is Dr. Abraham’s response to her e-mail to you.
1. “People with Graves disease are particularly sensitive to iodine.”
Response: Iodine was used in the treatment in Graves disease from the discovery of iodine up until WWII. Please look at our website Optimox.com at publication #4 Abraham, G.E.,The Wolff-Chaikoff Effect: Crying Wolf?The Original Interantioxidant-fruits.comst, 12(3):112-118,2005 and publication #5 Abraham, G.E., The safe and effective implementation of orthoiodosupplementation in medical practice. The Original Internist, 11:17-36,2004 up to 90% success rate was reported on the use of iodine with graves disease.
2. “Excess dietary iodine triggers autoimmune thyroid disease.”
Response: Iodine is the treatment for autoimmune thyroid disease. Again read publication #5 on our website.
3. “Most of us get about 10 times more iodine than we need.”
Response: Based on the very low RDA the last survey revealed 15% of American women are deficient in iodine.
4. “The idea with methimazole and other ATDs is that they block iodine absorption in the gut.”
Response: ATDs do not block absorption of iodine in the intestinal track but block the uptake of peripheral iodide by the cells.
5. “This reduces the amount of thyroid hormone the gland can produce. You defeat the purpose here if you add more iodine.”
Response: Iodine in the proper amounts normalizes thyroid hormone whereas ATDs suppress abnormally the thyroid hormone. Iodine is an essential element that the body is used to. ATDs are man made drugs that are toxic.
I know this is all a lot to take in, but there are other options out there. Someone told me yesterday, “Just take it out!” It pissed me off. My thyroid shouldn’t be taken out…it isn’t doing anything wrong, if anything my immune system should be taken out (and I am sure that sounds insane – as insane as taking out my thyroid does)…it’s doing something wrong by attacking my thyroid. I think of my thyroid as an innocent little guy…why don’t we look for ways to help our immune system rather than our thyroid? Really, is our thyroid doing wrong? It is just responding to the immune system that is attacking it.
When I spoke with a lady at RAI she told me, “Do not do RAI. It will put so many toxins in your body and destroy things you will never be able to repair.” And well, I haven’t had children yet, so that scares the heck out of me to mess with those other organs like that without really anticipating the consequences.
I think all of us are different and all Graves disease is a little different (some people have goiters and some do not) and I think that you will have to find your path…what works for me might work for you or some of it might work and you might need something more or something less, does that make sense?
I have been doing NAET treatments since August and haven’t noticed anything, but have faithfully gone almost every week since August. However, last week I was treated for auto immune system and oh my did I feel that one. And since Graves disease is an autoimmune disease I ended up only clearing 80% which wasn’t terribly exciting, but not surprising either. I have also tried acupuncture and herbs, but I am not sure if I was mentally prepared to devote time and energy to it, so I feel like I did it half-ass. I am trying acupuncture again and we will see how it goes, I will keep you all informed. All in all, I have never felt bad with Graves disease only when I go hypo because I am being overdosed on my medication.
In March 2008, I went to see Raj Bhattacharya, M.D. at the University of Kansas Medical Center. He was the fourth endocrinologist that I have seen. I first went to Mitchell Hamburg, M.D. at St. Luke’s Hospital in Kansas City. Then I visited Jeffrey Kalsen at St. Luke’s and finally settled with Richard Hellman of Hellman and Associates at North Kansas City Hospital. Richard Hellman had the best bedside manner of all of them, but is extremely busy and only took Blue Cross Blue Shield, so I had to see another endo to save money with my current insurance, Coventry.
When I went to Raj Bhattacharya, I brought paperwork about alternative treatments. I had asked the phone staff for an alternative thinking doctor–one that wouldn’t immediately suggest RAI. They told me Raj Bhattacharya was my best choice since he was the youngest.
Well, well, well, were they wrong!! I have never met a more closed minded doctor in my life. He was the first endocrinologist I have seen that asked me to de-robe and put on a gown. I later found out that my doc at Mayo would do that too, but it made me extremely uncomfortable at the time. Bhattacharya was completely uninterested in the material that I had brought. This, of course, upset me, as I had done a considerable amount of research and had contacted numerous people who specialized in Graves disease research.
I stressed to Raj Bhattacharya that I was not interested in having RAI (Radioactive Iodine), which he thought was ridiculous. Yet, we managed to get through the appointment, and I asked him what my next step was. He suggested I get a thyroid scan! A thyroid scan involves a small amount of radioactive iodine be put in your body, so that the thyroid “glows” when it is scanned.
I was so upset and told him that I refused to do that. He said that he couldn’t be my doctor, and I told him I understood. I really didn’t understand though. I didn’t understand how you could be a doctor, who studied for years, familiar with the benefits of research and didn’t want to bother to look at the information I brought to you? The treatments for Graves disease are by no means perfect, so there is no harm in looking into more options, right? WRONG if you’re Bhattacharya.
At least Richard Hellman respected my wishes to stay on my antithryoid drugs. At the time, Raj Bhattacharya was only 6 years out of Medical School!! 6 years and already so closed minded he doesn’t know how to a treat a patient. Pathetic. I would never recommend him to anyone, and that’s why I am posting this, so if you are considering him for a thyroid doctor–think again! He is an example of a endocrinologist whose practice is 80% diabetes, 20% thyroid–5% of which is Graves disease.
Oh and to top things off, I told the docs at Mayo about how Raj Bhattacharya told me that I had to do a thyroid scan in order to figure out if it was Graves disease….and the Mayo doctors told me that they had never heard of such a thing and a thyroid scan was completely unnecessary. This made sense, as the 3 endocrinologists that I had been to before Raj Bhattacharya had never recommended one to test for Graves disease. It is really scarey how a medical doctor can be that full of themselves that they don’t look at information/research that was brought in for them! These are doctors that actually treat people! YIKES.
So I finally got in touch with Dr. John Miles at the MAYO Clinic in Rochester, MN. On April 3, 2008 I had blood tests starting at 6:45am and then I saw Dr. Miles at 10:45am. I then saw Dr. McIver the same day but at 2:45pm in the Division of Endocrinology, Thyroid Clinic Consult. On Friday, April 4, I went to the Pulmonary Function Laboratory for the Resting Energy Expenditure–this is basically to get an idea of my functioning metabolism. I have gained over 60 lbs. while having Graves disease due to the fluctuation in my hormones, etc.
This is a shot looking into the Entrance to Mayo 18 West
The waiting room at Mayo 18 West
As promised, I am writing to give you an update on my visit to Mayo.
I arrived on Wednesday, April 2 at about 8pm. My first appointment at was 6:45am for a blood draw.
The lab was very cool. Huge waiting room and there was probably a lab tech coming out every 30 seconds calling someone’s name, so I didn’t have a long wait.
My next appointment was with Dr. John Miles. Dr. Miles is from Kansas City, and he is the reason I was able to get into Mayo in the first place. We reviewed the usual, like my diet, my cholesterol (which was perfect), blood pressure, weight, etc. He then examined my thyroid – noting that it was enlarged. He checked my hands for tremors (shakiness is a common problem for people with Graves disease) and hit my reflex joints to see if I would react to them — almost all endocrinologists have done that to me. Makes me giggle every time.
My appointment with Dr. Miles was more for the purpose of getting into my other doc appointment with Dr. Bryan McIver.
My appointment was at 2:45, but I didn’t meet with Dr. McIver until about 4pm. Since going to Dr. Richard Hellman, I am used to waiting that long and although it pissed me off when I was with Hellman, it didn’t bother me at Mayo because I figured there was good reason for it and there was. The lady before me was trying to decide on whether or not to do Radioactive Iodine (RAI), have thyroid surgery (complete and total removal of the thyroid gland) or staying on anti-thyroid drugs (ATDs). ATDs are my current protocol for Graves disease.
So my mom and I met with Dr. McIver. He is originally from Scotland and was trained in Edinburgh which delighted me to no end. When I first was told I had Graves disease I did some research and contacted both American and European doctors and found that European doctors were more apt to keep you on the drugs for a longer period of time–instead of the quick fix of RAI. There are three types of ATDs. I am on methimazole which is the generic for Tapazole. I am going to switch to propylthiouracil (PTU), which is what McIver recommends to women who are pregnant, so I am under the impression that it is safer and apparently under the impression that it will do me some good. It has to be taken 2-3 times a day because the drug doesn’t last as long in your body.
As far as Graves disease is concerned, McIver thinks I have had Graves disease since the mid to late 1990s. The reason he thinks this is because my original blood work from Mitchell Hamburg in January 2002 did not show extreme Graves disease, in spite of the size of my goiter (this is what they call your thryoid when it gets big). So he thinks that my body has been compensating for this overactive thyroid for quite some time.
My internist never took my blood. I hated needles and would beg her not to have my blood work done. I was young at the time, so she didn’t see the need to press the issue. However, I think had I had my bloodwork done, starting in the late 90s (when I was in my late teens), I believe Graves disease would have been discovered in me sooner than it was. Ironically, I started birth control in the late 1990s when I was 17. If you continue to read this page, you will realize that me getting off birth control at the age of 29 (after being on it for 12 years) might be an interesting aspect to the catalyst of the Graves disease. In other words, I strongly believe that birth control absolutely affected my body reacting the way it did and the possible reason for the Graves disease.
My thyroid produces a hormone, T4, my liver and kidneys then transform that into T3. He suspects that my T3 is messed up at the moment and that might be the reason for weight gain or side effects, like irritability, excessive thirst, etc. My T3 wasn’t tested in the lab yesterday, so he called the lab and they had enough blood left to do another test for the T3. I am still waiting on those results–as they weren’t back yet even when I met with Dr. Miles today at 11am.
Basically, with Grave’s, your immune system confuses your thyroid for a foreign body and starts attacking it. The thyroid’s response is that it overproduces thyroid hormone because it is confused…he said the neat thing about Grave’s is that your thyroid organ stays fine–there aren’t any lesions or damages to it because your immune system sends out white cells and antibodies and they latch onto my thyroid creating a protective coating around my thyroid. So knowing my thyroid isn’t doing anything wrong, I really don’t want to kill it and I don’t want to remove it.
Mom asked him what to do if I ever got pregnant and he said that I would need to be on the PTU drug and also need to see a doctor that dealt with high risk pregnancies. He said that they would probably take me off of the PTU in the second trimester because in your second trimester, your immune system basically shuts down…so it stops attacking your thyroid!! I need to be pregnant in my second trimester all the time then! Actually, I was seriously wondering if you could make your body think that you were in your second trimester of pregnancy so my immune system would shut down and start back up again. I wonder if a re-boot to the damn thing would do some good.
Probably the neatest thing about McIver was that he was willing to let me stay on my ATDs for awhile longer. Most endocrinologists that I have gone to will not allow me to stay on my meds and want me to get RAI done as soon as possible. I asked McIver how I could get him to be my endocrinologist and he said all I had to do was ask. So I asked. He said yes. So, twice a year I will be going to MAYO to see him. And the rest of the time I will get my blood drawn in Kansas City to make sure that my levels are okay.
I brought all my herbal supplements with me–some of you know that I have been doing NAET (www.naet.com) with Sandra Karr in Mission, KS, and she has recommended a number of herbs–from stuff to help my adrenals to general vitamins. He was curious to know what they were all about. So he looked at all of them and said that I needed to get off the iodine which I have been on for about 8 weeks. Iodine is a bad thing for people with Graves disease to take because iodine basically fuels the thyroid fire that is happeantioxidant-fruits.comng in my body. Although the iodine has helped tremendously with my sugar and other cravings, I do think it has been fueling the fire since both McIver and Miles thought my thyroid was much bigger than normal and the last time I saw my regular endocrinologist, he told me that it had shrunk to almost normal size. So I guess it will take 3-6 months for the iodine to get out of my system and I will have my blood taken once in Kansas City before I head back up to Rochester, MN.
McIver mentioned that he has had people with Graves disease have success with holistic treatments and herbs (he mentioned rosehips and cranberry extract in particular). Luckily, McIver is not opposed to holistic medicine. In fact, he mentioned that the neat thing about the holistic approach is that it tries to improve my immune system, rather than the thyroid. After all, my thyroid isn’t doing anything wrong. So he was alright with Sandra Karr trying to fix my immune system that is acting like an idiot attacking my thyroid. Stupid immune system.
This morning I did a respiratory metabolic breathing test (went to a room with a bed, laid there by myself for 20 minutes with a pulse thing on my finger and then the nurse came back in after 20 minutes and put some hood on my head for an additional 15 minutes…so they figured out that I burn about 2000 calories while I am sleeping. I did fall asleep and was having a terrific dream, so it was a bummer that I had to be woken up) and they found that my metabolism was 14% higher than they expected. I also met with a dietician and will, of course (SHOCKER), need to make adjustments to my diet. I am anxious for T3, as I suspect McIver is right about that one.
I would appreciate any feedback, questions, comments or concerns that any of you have so that I can investigate this sucker to the end.
I DO NOT WANT RAI and I would prefer not to have my thyroid removed (if I do, I am coming to Mayo to do it).
Insomnia. I new side effect I am experiencing…I believe this is a result of my iodine supplement (now discontinued). Will look forward to this being over.
Since I couldn’t sleep, I read through more Graves disease Stuff and asked the following questions of Dr. McIver.
McIver: “The insomnia almost certainly reflects the overactive thyroid, stimulated in part by the iodine excess….. Should settle as the thyroid hormones settle, but it’s certainly a nuisance.”
1. Has he seen this website?
Elaine Moore’s website.
The website information is perfectly sensible and reasonable. Specifically,
the advice to limit iodine, and use goitrogens makes good sense (a lot more
sense than the iodine supplements you were being advised to take!). PTU and methimazole are derived from plant goitrogens, so they function exactly that way! The rest of the stuff refers to the same types of lifestyle changes that we discussed: sleep, healthy well-balanced diet, good mental, physical, emotional and spiritual health — all of these have a real impact on immune function. The acupuncture and herbal approaches are of uncertain benefit, but have good sense behind them, even if they don’t come with a guarantee of success.
2. This bone marrow (ATDs making it sick) is totally stressing me out.
Bone marrow is best checked simply with a CBC — your white cells are OK, so we know there’s no major harm. If the drugs affect the bone marrow, it isn’t going to be subtle, and we certainly don’t need to go sucking out samples of bone marrow to check it out! Quit worrying about it in the short-term, since we’ll be monitoring for this in any case as part of your follow-up.
3. Any chance I could go off ATDs and try all herbal? (I ask this because of question #3 and my worry about my bone marrow).
If you stop the PTU / methimazole now, particularly with all that iodine on
board, you are likely to send your thyroid hormone levels through the roof and end up in trouble. The time to go “all herbal” is when you have had the thyroid stable for a few months (my preference is 6 – 12 months at a minimum), and then undertake a planned withdrawal of the drug. No harm in starting the herbal (and lifestyle things) now, but don’t stop the drug!
4. When I start this PTU, he wants me taking 3 pills, 3 times a day. I have two concerns – if I miss a dose, do I double up? Do I need to take the doses every 8 hours? There are some Saturdays that I like to sleep for 10 hours, so I would like to know if I need to set an alarm clock to wake up.
The starting dose for the PTU is supposed to be ONE tablet (50mg) three times daily (not three, three times daily!). Three tablets per day was what I
recommended, and also what Dr Miles wrote on his prescription. Missing one is not a disaster, so don’t double up on the next dose if you miss one. If you’re late getting up, simply “squeeze” the three tablets into the rest of the day. Don’t try taking them all at once, but certainly don’t set your alarm clock to wake up and take the tablet!
6. Please share email I got from Elaine Moore (author of Graves disease book) on 3/5/08. I am curious specifically about the second and fourth paragraph. Curious to know if he has ever put someone on levothyroxine. Also, wondering what he thinks about selenium and amino acid acetyl-1-carnitine being added to my herbal/vitamin cocktails daily.
I published one of the first definitive medical studies on the “block and
replace” program back in 1996, based on work we did in Edinburgh on treatment of Graves disease. We demonstrated that this approach of “putting the thyroid to sleep” did not have any advantages over the “lowest possible dose” approach, at least in terms of long-term outcome. There are a few people whose thyroid hormones fluctuate a lot in whom this approach can be more stable. However, it involves higher doses of the PTU or methimazole, so the risk of side effects is probably slightly higher. I will enclose a copy of the paper, in case you are interested.
Selenium is an essential co-factor for thyroid function. I am not aware of
any scientific data that shows benefit (or harm) from selenium in modest dosese. Similarly for the acetyl carnitine. However, I have no objection to trying these, if you wish to do so. They are not going to be harmful!
I asked the good Doc (Bryan McIver) to sign my copy of the book, which I bought online. He asked if there was anything I wanted him to write. He wasn’t terribly optimistic about my Graves’ disease when I first started going to him (afterall, having it for 6 years didn’t get me to the top of the remission list). So I asked that he said, “Let’s Beat This Bitch!” He “sorta” did. I took a photo, just for fun.
Update May 6, 2008
I started acupuncture today. I am going to a man in Kansas City named Chris Powell. He says he has had success with people with Graves disease so we will see how it goes. I will, of course, keep you updated. Write me an email if you haven’t heard from me in awhile. Or send me a question to ask McIver. I continue to communicate with my doc at Mayo, Bryan McIver. I asked him some questions and thought I would share them, in case you’re interested.
1. Is there a link to thyroid Graves disease and your racial heritage?
Very definitely YES. Scots / Irish / “Viking” all have high risk. So do the Japanese. At first we thought the difference in race might explain the different results, but later studies from Japan agreed with our findings.
2. What is carbmazole? What if you did carbmazole and T4 longer?
Carbimazole is the same as Methimazole. Longer-term treatment with these drugs carries all of the concerns that we’ve discussed in the past re/ Methimazole, but more so, because the combined therapy involves continuing high-dose antithyroid drugs.
3. What do you do when someone is allergic to ATDs? (asking for my knowledge and understanding and curious to know if there are alternatives).
We move on to radioactive iodine or surgery, for people who are allergic to both available drugs (PTU and Methimazole).
4. Do you believe there will be or is he interested in finding a solution to treat the immune system as opposed to the thyroid gland?
Eventually that may come, but not any time soon. Huge advances have been made in the understanding of autoimmune disease, but there is a real challenge with MONEY to fund research in this area, and the availability of good treatment options (surgery and radioiodine as well as drugs) makes this a low funding priority.
5. Is there a way to be synthetically second trimester pregnant? I am on a Graves disease Support Group through Yahoo! Groups and these stories about women in second trimester pregnancies are incredible!!
Pregnancy modulates immune system function SAFELY. When we find that magic, we’ll be able to fix thyroid Graves disease, I’m fairly sure.
6. I am still hating PTU…I think that metal-tasting is messing with my skin. (oh yeah, what makes it taste like metal?)
The taste comes from the similarity of this compound to the compound that makes garlic taste like garlic. I’m not aware of any link to skin problems. The taste issue will fade as the dose is (eventually) lowered.
June 8, 2009 Update
In April of 2008 I was switched to PTU (Propylthiouracil). I just wanted to try PTU when I was told by my awesome doctor at the Mayo Cliantioxidant-fruits.comc, Bryan McIver M.B., Ch.B., Ph.D., that’s what pregnant women are put on instead of Methimazole (because it is safer for the baby). I thought, “Then why wouldn’t it be safer for me?”
On my last visit to the Mayo Clinic in Rochester, MN., which took place on May 6, Dr. McIver told me that he is cautiously optimistic that I am headed toward remission. I attribute this good news to getting off of birth control. If you are on birth control and can get off of it, I suggest that you do–why not see if that might be contributing to your Graves disease?! Dr. McIver does not believe that extra estrogen is a PREDICTABLE factor. I think the added estrogen in my body did something to my overall hormone levels and imbalanced the chemicals in my body.
I have been off of birth control for over 8+ months and in those 8 months I have gone from 2 pills/day of PTU to 2 pills/week, not too shabby.
I have had Graves disease for 7 years and my doc gave me two more years (I begged him because 8 is my favorite number, lame, I know, but really felt it in my gut to do it this way) to see if i went into remission, so I could avoid RAI (Radioactive Iodine).
I took herbs forever and then stopped because it just didn’t feel right in my gut anymore. Although, all my trips to holistic folks did help me become more aware of my body and how and why MY BODY react to things.
All for now,
Please contact antioxidant-fruits.com if you have additional questions.
June 28, 2009 Update
Wrote McIver with the following inquiry:
“my thyroid is still very beefy. i dont feel hyper, but rather hypo. is there a pattern like that when you get off the anti-thyroid drugs after so many years?”
“Yes, it’s normal to feel a bit “hypo” and to have a “beefy” firm gland after a long time on anti-thyroid drugs. Hopefully, we can progressively get you off those drugs altogether, with long term remission being the real goal here……”
…glad I’m “normal”.
July 9, 2009 Update
Wrote McIver with the following news about the Graves Disease situation:
what up, doc?
as august draws nearer and as i anxiously anticipate my blood results for 3 months after my visit with you, i continuously am noticing changes. mostly for the better, except for the few hypo symptoms i have previously complained about.
i used to pee as frequently as a pregnant woman. my thirst level has gone down a lot and as a result, i am not drinking as much and not peeing as much. it is really nice. i love it. in hindsight, i didn’t realize how much of a crazy person i was!! the frequent trips to the bathroom were only a pain during that one week/month that only women get to enjoy. but really, the best thing is that i enjoy the lack of cotton mouth i used to feel all the time.
the biggest change i have noticed and as previously mentioned, is in my hair. it’s almost normal again, although the quantity of hair is still down, the feel of it is back to normal and for the first time in 5 or 6 years, i actually blew dry my hair and wore it down for a wedding last weekend. this is a milestone. might sound superficial, but believe me, it is not.
also, my sweet cravings and other cravings have reduced significantly. i no longer feel like a crazy person with my cravings (basically, before there was no stopping me from getting what i craved). i believe this lack of craving will help the pocket book a bit. it’s delightful and freeing. **hugs** all around.
so, you really don’t need to know all of this, just thought i’d give you an update and say thank you again. keep those fingers crossed for that august bloodwork. i am anxious to get off of this medication!
Thanks for the update.. It all sounds promising….. I remain cautiously optimistic for the long-term.
November 11, 2009 Update
Go to see McIver on Friday. He has requested an ultrasound of my thyroid (much better than a thyroid scan, as a thyroid scan requires you take a small amount of Radioactive Iodine so that your thyroid glows during the scan). I was curious about the ultrasound for my thryoid to check the status of the Graves disease, here is our communication.
everyone that asks me about my thyroid gets an ear full about the anxiety i have for the ultrasound on friday.
so…my massage therapist asked me today, “what is he looking for by doing that?” i said i didn’t know.
so…doc, why you want an ultrasound? perhaps that will relieve anxiety.
Shape, size and texture, and blood flow. All help me to finesse my level of concern about recurrence of the overactive thyroid. If the gland is big, juicy, with lots of blood flow, you’re at higher risk for recurrence……. small shrivelled and lacking blood flow, very likely to be stable in remission.
Shit. I fear it’s big and juicy. I’ll envision it being the other. Must follow protocol for Operation Bye-Bye Graves Disease.
Do I get a DVD to take home? So I can show my friends? That’s sort of a joke but not really.
I mean if I have the ultrasound done at 8am, and don’t see you until 1pm…do you watch the video of it or read what the tech person says?
You and I will review the images of it, and read the report.
Update – November 15, 2009
Update – November 15, 2009Drove up to Rochester on the 12th and had my appointment with McIver on the 13th.
Well, well, well, folks…All the prayers worked! He has classified me as in remission from Graves Disease! Bloodwork is perfect! Ultrasound was good (gland still large)! Off medication in 6 weeks and the bloodwork 6 weeks thereafter. He says he gives me a 75% of not getting Graves again. Which he says is a pretty favorable prognosis. It was soo cool to see my perfect thyroid levels. Especially since he considers two pills a week as not on meds. 6 weeks I get off meds! That’s a Merry Christmas 2009, Jenny Dean!
Read my tribute to my Graves Disease, “Oh Graves Disease what you put me through!!”.
Ultrasound Photos are posted below.
Ultrasound of Left Side of Thyroid
Ultrasound of Left Side of Thyroid – Blood Flow
Ultrasound of Right Side of Thyroid Nov 2009
Ultrasound of Right Side of Thyroid – Blood flow Nov 2009
Mayo Bloodwork from 3 Apr 2008 to 13 Nov 2009, monitoring Graves Disease
Note: October 2008 I stopped taking Tri-Sprintec, a generic form of Ortho-Tricyclen Birth Control. Look at how much my TSH level improved as a result.
Update – February 22, 2010
McIver finally got my blood results (got it taken on the 15th of Feb)…GREAT NEWS!
TSH = 2.97; (Total)T3 = 105; (Total)T4 = 7.2
McIver says, “Remission, now stable for a period of time. Couldn’t ask for better. Recheck in about 3 – 4 months…….CONGRATULATIONS!!”
Update – October 19, 2010
Vitamin D was 21 (ideal is 35+).
Normal blood count, chemistry, liver and kidney function. Glucose was 96.
Update – September 26, 2011
Went up to Mayo for my annual physical (I’ve asked McIver to be my full time doc – since he is an internist and also a thyroid doc, works perfectly).
Here were my thyroid blood results:
TSH = 2.7
free-T4 = 1.2
T3 = 109.
McIver said, “All perfect. In remission. Stable!!”
He also requested an ultrasound, so there will be more ultrasound pics to come soon!
Update – March 15, 2013
Went to have my thyroid levels checked today – McIver just sent the results, “Your TSH was 3.65 and your Free-T4 1.0. These results are in the mid-normal range and suggest that you remain in REMISSION.”
Update – November 6, 2013
I recently lost 60 lbs – so wanted my blood checked to make sure that Graves hadn’t reared it’s ugly head in my body again – good news! I remain in remission and my CBC came back perfectly well – woot woot!
Related Graves Disease Topics on this site
Tuesday 24th of May 2016
Hi there, I was recently diagnosed with hyperthyroidism and was told it is likely graves. Since then I've been terrified, especially after reading other people's stories online. It sounds like a life time of suffering, emotionally and physically, and now I'm scared to death about what's coming. The only symptoms I have so far is weight loss (lost 20lbs in 3 months but I thought it was great at first bc I just had a baby and helped me lose all the pregnancy weight) some mild heart palpitation and tremors and generally feel weak but nothing unbearable. I just thought I'm in poor shape since I have not worked out in over 3 years (since my first son was born)
Anyway, I'm meeting my endo for the first time this Friday and I know she'll likely put me on anti thyroid drugs. Again, I'm scared of the side effects. Some people say they felt worse after being on it, got fat, hair fell out, body pains and suicidal. Omg! Then why would I go on drugs if I feel fine now???
Please can someone please let me know that I will be ok. I have 2 small kids and a wonderful husband I don't want to be a burden to them. I want to be able to spend time and play with them and just live a normal life. I'm only 36. I don't have any family history of thyroid problems on my dads nor moms side. I first started noticing weight loss was when my dad was sick in the hospital and eventually passed away in March, and due to family drama with my sister, I was extremely stressed with everything. Cried everyday. I don't know if this had anything to bring on the graves but I'm still having a difficult time accepting this. I keep asking "why me?" My family needs me.
Thanks for listening and hopefully I'll get some advice. P.s. My family doc gave me beta blockers to help with the heart palpitations but i don't really feel they make much difference. The helped with my tremors though, i can finally write properly again.
Tuesday 24th of May 2016
I was diagnosed with Graves in March 2011. I was put on Methimazole for my thyroid and Propanol for palpitations. My first doctor immediately suggested RAI as the Methimazole didn't help. I FIRED HER. RAI and surgery was NOT an option for me and I did not want to be on medication for life.
Believe it or not, my dr suggested I stop eating certain foods, go organic, stress less (easier said than done), exercise, basically change what I've been doing/eating for the past year. I went from hyper to hypo and back to "normal".
I agree with Dianne, try to achieve remission with the anti-thyroid drug first. Your body is fighting itself for a reason..
*If you are active on FB, there are groups for hyper/Graves that provide support.
Good luck Cece!
Tuesday 24th of May 2016
Hi Cece, I was first diagnosed with grave's Feb. 2010, I worked with my endocrinologist who agreed to try to get me to remission with use of Tapazole (Methimazole) an anti-thyroid med. We started out with 10 mg a day (it may have been more to start just to slow my thyroid down quickly) but I soon dipped into HypO hell when my TSH tested at 54.22! (normal was 1.0 - 3.5). Anyway, I was being closely monitored, blood test every month but we stuck with it and from 2012 to 2015, I was on a maintenance dose of 2.5mg every day until I finally went into remission. I still have my thyroid and now I only see my endo once a year since I've been able to maintain normal levels for the past 2 years. Once I started the methimazole, I felt 100% better within 2 or 3 days, the body aches went away, no more shakes, no muscle weakness, no racing heart or palpitations, my blood pressure came down, I slept better, etc. The only side effect I had was hives that came about a week after starting the med, but they completely went away after a few days, and that was the only side effect for me. Don't let the side effects scare you, all meds must disclose potential problems, but for the most part, this is a very safe drug, it was highly effective for me. Don't let the doctor talk you into RAI, where they kill off your thyroid, if that happens, you will have to be on thyroid medication for the rest of your life. Try to achieve remission with the anti-thyroid drug first, it's the easiest and less invasive way to fix your thyroid without killing it off. But you may have to stay on it for a few years, the longer you're on it, the greater chance of achieving remission. Hope this helps, good luck! Dianne
Monday 24th of November 2014
When I was diagnosed with hyperthyroidism the first thing my endo said to me was: ¨I do not do RAI treatments to my patients since I don`t believe or trust in that method, so if you came here looking for that you can find yourself another endo¨. I liked this guy as soon as he said that. I have been on tapazole and a beta blocker for 3 months, feel a little better, rarely do I sweat or have heat intolerance and my heart palpitations are practically gone, YAY!!! Don`t feel tired all the time either. What still bothers me though are the frequent bowel movements and my shortness of breath but I know all symptons won`t disappear all at once in a jiffy. Patience, that`s what my endo said to me, fill yourself with PATIENCE!!!
Tuesday 11th of March 2014
Hello My name is Sam i was diagnosed with GD when i was 5 years old. I am 20 years old now. When i was five years old i was skinnier than a stick and was fainting and my heart beats were out of control. I also would go from hot to cold in a matter of seconds. I got my thyroid removed when i was 11 and now take levothyroxine everyday of my life. I struggle with lots of complications as result of the surgery. I know that it will get better everyday. I am tired 24/7 and am anemic . Anyways not sure if youll see this but thank you for sharing your story not many people my age understand my struggles and it is nice to see and read other peoples stories so i dont feel so alone.
Sunday 16th of February 2014
Thank you for your journal about your Graves' Disease. I am just starting on this journey,diagnosed 5 weeks ago. Taking 30 mg of methiamazole, beta blocker and lorazepam to with sleep at night. I have always been very healthy but have had alot of stress in my life. I am just trying to accept that this may take years to balance. I do not want to have RAI or surgery on my thyroid as my thyroid isn't sick. I see the endocrinologist next week to see how I am tolerating the meds...Thank you again for the time you took to post your blog along the way. Actually, it probably was very good for you. So happy you are doing well. Take care (I am eating very healthy and taking vitamins and some supplements; job every morning - highlight of my day.)
Sunday 16th of February 2014
I am sorry to hear that you're just diagnosed.
" I do not want to have RAI or surgery on my thyroid as my thyroid isn’t sick." - I definitely understand this thinking - it is your immune system that is out of whack, attacking your thyroid and your thyroid is just trying to defend itself. It's messed up common sense wise how they treat this disease.
Make sure your endo isn't a diabetes focused endo, but rather someone that has a lot of experience with thyroids.
Where are you locateD?
Friday 13th of September 2013
Hi everyone! I just change my meds, I been taking ptu for almost 7 years and on my recent doc appt she got me into changing my meds because of recents studies showing that some people had it to get a liver transplant because of ptu and it is not recommendable anymore to take this med, so I went ahead and started taking Metimazole wich I started having symptoms again symptoms that I didn't have while on ptu and I was felling very good more that good just only weight loss but no that bad! I just Wanted to see if there's anyone here in this forum that still taking ptu? And if the have heard of the same of ptu messing up your liver which I think a my type of meds can do that! But I appreciated your responses!.. Thank you oh and also how to get my husband at least to understand what are I'm going through for him is like he doesn't believe anymore when I'm having a bad day cuss of my hyperthyroid symptoms!.. Thanks much appreciated!..
Friday 13th of September 2013
I know what you are going through symptom-wise with the GD. It is no fun. I was on PTU for a few years before deciding to get at the root of the condition and saving my health overall.
There is significant evidence in a connection between gluten sensitivity and thryoid conditions. I suggest going gluten-free and see if your symptoms change. In addition, you need to be sure you are getting enough protein--the thyroid needs this to function properly. Also, heavily restrict/eliminate sugar. This worked for me and others I've worked with. I feel better than ever. I wish this for you, too.
Good luck and take care! Bridgette