Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
I was diagnosed with hyperthyroidism by my internist July 2018. My TSH was <.01 and she wanted me to get into an endocrinologist immediately. She did not make the appointment for me and I found that there was a wait of at least 2 months for all I called so I made an appointment with one who had good reviews. Called my internist and she freaked and said keep looking. I called the entire PPO list and finally found a group who had a new doctor with an opening in a couple of weeks.
She was nice, tested me regularly, and seemed to know what she was doing, but it seemed to throw her off when I asked questions. She had just finished her internship before joining this group. After a couple of months seeing her, she wanted me to see an opthalmologist who specialized in thyroid eye disease to evaluate the progression of TED. She made the appointment. When I got to that appointment, that doctor was a plastic surgeon. He didn't even look inside my eyes. All he was interested in was removing the bags around my eyes. When I questioned whether he was going to look at my optic nerve or measure the muscles in my eyes, he said that wasn't necessary. I left confused and a little miffed about wasting the time and money for the appointment.
At my next appointment, I told my endo what happened there and she said she didn't know why he didn't evaluate as requested, but she would follow up with him. As far as I know, she never did. Her referral to him only said to evaluate, that no imaging had been done, nothing very specific. At that appointment, she recommended thyroid surgery to stop the progression of TED, and I told her I wanted a second opinion. Opinions on the internet seem to be divided whether removing the thyroid will stop TED, and she admitted that sometimes, it doesn't.
It took 2 more months to get into another endo for a 2nd opinion. He glanced at my test results and basically agreed with everything the first endo said. He completely pooh-poohed the idea of controlling it with diet. Endo #1 had been skeptical but agreeable to diet changes. He also sent me for blood work, and the tests were done by the same lab in Austin. I'm in the Dallas area.
When I saw the test results I wondered if they were even mine, they are so different. Now I'm wondering what to do next - stay with this 2nd doctor who is much more experienced with hyperthyroidism than the 1st doctor, and recommended by a friend of mine - go back to the first doctor, or - find yet another endo for an opinion.
My first visit with endo #1, she tested Free T4, Free T3, TgAB, TSI, TPO
My first visit with endo #2, he tested TSH, Free T3, Total T4, T3 Uptake
Here are my test results from before I started having hyperthyroidism symptoms through the first months with endo #1.
Free T4 from before I was diagnosed
4.21.15 - .91(normal) range .58-1.64
12.13.16 - 1.06 range 1.06 range .58-1.64
internist didn't test T4 in 2017 or July 2018
8.1.18 - 3.7 range .9-1.8
8.18.18 - 1.88 range .82-1.77
9.6.18 - 1 range .9-1.8
10.2.18 - .87 range .9-1.8
10.25.18 - 1.42 range .82-1.77
Endo #2 didn't test Free T4
TSH
4.21.15 - 2.11 range .34-5.60
12.13.15 - 2.13 range .34-5.60
7.17.18 - <0.01 range .45-5.33
9.6.18 - <0.02 range .3-4.5
10.2.18 - .87 range .9-1.8
10.25.18 - .32 range .45-4.5
1.30.19 - 2.8 range 2.2-4.2
Free T3
8.1.18 - 11.1 range 2.2-4.2
8.18.18 - 5.1 range 2.0-4.4
9.6.18 - 2.6 range 2.2-4.2
10.2.18 - 3.9 range 2.2-4.2
10.25.18 - 3.9 range 2.0-4.4
1.30.19 - 2.8 range 2.2-4.2
One of my main concerns and reason I'm not sure if I want to continue seeing Endo #2 is the length of time between testing. Endo #1 was doing testing every 2-4 weeks. Endo #2 is 8 weeks.
I'm concerned that TSH went from barely above 0 with the first two doctors' tests, and shot up to 5.21 with Endo #2's test. I haven't had another appointment with him to ask about that. Seems like that would need to be retested soon to see if it is really that number.
I'm also curious why the range numbers are often different for the same thing, especially the TSH, even from the same doctor. Why is that?
The TSH cannot be used when there are any positive thyroid antibodies from the Graves' Disease such as from the TSI and the TRAb antibodies tests. One would need to go by how the current FT3 and FT4 tests are doing.
I see that the TSI test has been done. Do you have any latest TSI and TRAb to see how these are doing?
Different lab companies have their own lab reference ranges. If possible to stick with one lab company can give a better consistency with the labs to see an overall better picture of how GD is doing.
I am looking at the TSH tests and I see that for the lab date of 10.2.18 is showing a lab reference range of 0.9-1.8 that is similar to the FT4 range.
And another TSH test dated 1.30.19 with the lab reference range 2.2-4.2 is similar to the FT3 range.
Are you on any meds? If so which ones, how much is being taken and how often is being dosed through out the day?
Watching out for the dietary triggers as well as the environmental triggers definitely do make a difference when one has an autoimmune disorder.
Endo #1 sounds so much better than #2.
{{{hugs}}}
How are you feeling, symptom-wise, right now?
Are you experiencing HYPER symptoms?
Fast heart rate, feeling anxious, losing weight, being hungry all the time, having stomach de-stress (diarrhea). How is your vision?
Are you taking any anti-thyroid drugs?
From July 2018 to March 2019....approx. 9 months.
Have you done any research about taking medications, supplements and diet?
If you have TED, it is not advised to do RAI as it might make the condition worse.
Do you smoke? THAT will make that condition worse.
I was surprised to see testing within 2 weeks. And, what are the doctors looking for UNLESS you are taking anti-thyroid meds.
It takes approx. 1 month to see changes when taking meds. It takes approx. 5 weeks for the meds to first kick in.
Testing should be T.S.H., Free T3 & Free T4, TSI, TRaB & TPO.
Have the doctors confirmed what caused the Hyperthyroidism? Is it Graves Disease?
I can only speak for myself, diet has made a tremendous difference. The foods we eat can cause inflammation to our immune system which ultimately has a connection to other medical issues in our body (ei. TED) I hope you cut out a lot of your sugars and carbs.
I wish I could give you an answer about your doctors. I don’t think going to a plastic surgeon was in your best interest. Surgeons do surgery. You need a doctor (not necessarily an Endocrinologist) that can test you properly, And, give you some sound advice.
“Conventional doctors” are only going to give you the 3 choices- ATD, RAI or surgery.
Integrative & Functional doctors will treat your whole body. Possibly, a DO might be helpful.
What have you being doing the past 9 months to make yourself feel better (calmer)?
Try not to look at you T.S.H. Too much. Gauge yourself with the FreeT3 & FreeT4.
I started in January 2018. I am now off meds. My numbers are mild HYPO. I changed my diet. I gained back weight. I am much happier.
Being that you are experiencing eye issues, I say this - give your body and eyes a chance to calm down with meds, supplements and diet. Stay away from RAI. And see where that goes. My father went through a lot with surgery to his eyes. See what YOU can do before ANYONE touches your eyes.
I hope you are feeling better.
Free T4 from before I was diagnosed
4.21.15 - .91(normal) range .58-1.64
12.13.16 - 1.06 range 1.06 range .58-1.64
internist didn't test T4 in 2017 or July 2018
8.1.18 - 3.7 range .9-1.8
Endo#1 prescribed methimazole 15mg 3x daily
8.18.18 - 1.88 range .82-1.77
9.6.18 - 1 range .9-1.8
Endo#1 changed Rx to 15 mg 1x daily
10.2.18 - .87 range .9-1.8
Endo#1 changed Rx to 15 mg 1x every other day
10.25.18 - 1.42 range .82-1.77
Endo#1 changed Rx to 15 mg 1x daily
1.30.19 Endo #2 didn't test Free T4
Endo#2 changed Rx to 15mg 1x every other day, 7.5mg on other days
TSH
4.21.15 - 2.11 range .34-5.60
12.13.15 - 2.13 range .34-5.60
7.17.18 - <0.01 range .45-5.33
9.6.18 - <0.02 range .3-4.5
10.2.18 - 1.18 range .3-4.5**
10.25.18 - .32 range .45-4.5
1.30.19 - 5.21 range .35-5.5** And this is the jump that concerns me
Free T3
8.1.18 - 11.1 range 2.2-4.2
8.18.18 - 5.1 range 2.0-4.4
9.6.18 - 2.6 range 2.2-4.2
10.2.18 - 3.0 range 2.2-4.2**
10.25.18 - 3.9 range 2.0-4.4
1.30.19 - 2.8 range 2.2-4.2
The only RSI and TrAb tests were done by the Endo#1 on the first visit. None since by either. Both doctors used the same lab, at least the name and address are the same. Maybe that's the corp office and a local lab actually processed them.
I'm still taking Methimazole 15mg alternating 1 pill one day and 1/2 pill the next. Lately, I've noticed I am always hungry again, heart pounding at night, and increasing number of bowel movements per day. I've had some days where it seems I just can't think straight, and in the evening, I'm so tired by 8pm that I'm dizzy. Yet, I still have trouble getting to sleep and staying asleep. I've had insomnia for years but it got a lot worse last summer, then seemed to get better with meds, and then around December, it got bad again and hasn't changed.
Yes, I have Graves disease. I don't know which test shows that, and I don't think either of the doctors have retested to see if the antibodies have changed. Endo#1 said it will run it's course and her goal was to lessen the Methimazole until I was off of it. Endo#2 said I will always have it, that it will never go into remission.
StillLearning, my vision is ok, but I can tell there is more swelling around my eyelids and my eyes are bulging a little. I went through a time when it hurt to move my eyes,and then that got better. The last couple of days though, it hurts again. I got Prism glasses in January and that helped the double vision a lot.
Endo#2 wanted me to see an opthalmologist who specializes in thyroid eye disease, and I have an appointment Monday. He too is a plastic surgeon.
In October, I started an autoimmune diet and started feeling better. Then a weekend with my girlfriends, eating out every meal for 3 days, and I was off of it. Then there was Thanksgiving, then Christmas, and I just gave up on it. This past week, I have cut out gluten, sugar, and foods with iodine, and it was great while dh was out of town, but the minute he got home, he wanted to go out to eat. I've read where people can stick to this diet while eating out, but I find it impossible. Waiters never know what ingredients are in dishes and even when they say it doesn't have something in it, I get the food, and I can taste chili, onion, or whatever.
I don't want to have eye surgery, and from what I've read, no one will do it until the TED has stabilized, and I'm not there. But I would like to know the condition of my optic nerve and eye muscles. I don't want to risk losing my vision.
StillLearning, did you have TED too, or just Graves? Are you completely back to normal now or do you have to worry about hypo getting worse now?
I have never smoked, but grew up with both parents being chainsmokers. Both endos said that wouldn't be why I got TED though. I also have had two retina tears in 2016, and I wondered if that made my eyes less resistant to TED.
I was confirmed with Graves Disease, the first month into it. I had the RAI uptake & Scan which you swallow a tiny bit of radioactive iodine(a capsule) and I waited 24 hours before they took a scan of how much was absorbed into the thyroid. (Mine was 74%) The doctors wanted to do RAI 131 to knock it out. (Sorry to repeat myself with this story to the forum) I had it out with the radiologist who was pushing to do it and I talked back to him saying it was my body and he didn’t live in it. (Because I had NO intention of doing RAI131.) He told me I was too emotional and that it was the disease talking. (I didn’t know about Graves Rage :-) then.) I get fed up with doctors that think they know what is best for their patient. I always question authority.
Anyway.....from reading your post, the answer is really simple. You said it yourself that eating a certain way makes you feel better. Well, my dear, then you need to buckle down and do what is necessary to feel better. I don’t go to restaurants that often BUT if you try to stay within the simple grilled chicken and salad with olive oil and balsamic vinegar on the side, I do okay. Figure out the foods that you can handle then you can go out. YOU know better than anyone else what kind of foods will make you feel better.
I was on the A.I.Paleo Diet which is very strict but is worth it. When I start it up again, I hope to drop the weight.
I am confused about how your doctor is telling you to take your medication.
When did you start? How much did you take the first time period before the doctor changed your meds because of the lab results? Where did you start and what progression of dosage did you decrease in?
MM shared with me that it is best to keep the meds even through-out the day. Like take 1/2 of dosage in morning then 1/2 dosage 12 hours later.
I also took an herbal supplement (Thyroid Calm) 4x a day with the meds. Plus, other supplements like liquid Cal/Mag/Vit D, And, through other blood test results of vitamin, mineral deficiencies, I took zinc, too.
No, I don’t have TED (never did) I do notice that if I consume too much sugar, the next morning my eyes feel like there is sand in it and scratching my eyeballs - VERY uncomfortable. It’s gotta be inflammation going on. I saw a lot of bad advice given to my dad for his TED. Just be careful, Matte.
I am not completely back to normal. Don’t think I ever will be BUT I am much more calmer now than I have ever been before. (I have been living with this for so long and it was diagnosed only a little over a year ago.)
Getting back to the diet....I get it. I fell off the wagon, too. And, I am regretting it because I have gained back most of my weight. I still feel a fast heart beat on occasion, I still crave sweets and bread/bagels and cookies and pizza. (Must I say more) BUT I felt so much better being thinner and having less symptoms when I was strict with my eating. YOU CAN DO IT! - You know that.
Who is dh? Husband? Boyfriend? I have a husband that brings home the food and snacks that I beg him not to. I told him to lock it up or hide it. If I don’t see it - I won’t want to sneak eat it at night when no one is looking. Cold Turkey is coming soon - I need to kick the bread/gluten habit. I blame it on my GI who needed me to eat it for 2 weeks so she could test me for celiac.
Sorry about the ADD. About the smoking....both my parents smoked. You don’t get TED from smoking but smoking can make it worse. It has something to do with constriction of blood vessels.
You asked about HYPO.....I am mild right now. Next blood test my Endo. Is testing me for Hashimoto’s antibodies. Some people can have both antibodies.
My Endo. Recommended another supplement to help me with gaining more energy while I am feeling tired.
I will start next week to see if it helps. The Thyroid Calm helped me a lot when I was hyper. (I trust my doctor - MOST of the time :-)
I try not to worry - to me it is a waste of time and energy - Why you ask? Because if you spend all that time worrying and in the end it really wasn’t what you thought it was - then you could have spent that time not stressing yourself out. Try not to over think this.
You sound like a very smart person. You are doing your research. YOU know the right foods to eat. And, to think that when you spoke to the doctor about that diet - they didn’t see the point. First sign - ditch them.
You are more important than their pride and arrogance.
If you need their approval - then you know you went to the wrong person (you know more than them)
I have been through so many doctors, in my lifetime, that NOW I question every move they make. They are not all knowing. One should never leave their life in a doctors hands. They call it a practice for a reason - doctors practice on their patients. (Sorry, if I show a little rage towards them.)
All I am saying is be prepared. Ask questions. Write down notes. Keep a log of everything you eat, meds and how you feel. This is a process. Keep in line. Do everything to a degree that you can get a real handle on this and you will find yourself (hopefully) in a good place, like me after one year. Then it is all about tweaking whatever I am doing to keep me balanced without the meds. THAT was the whole point of this. I didn’t want to take meds the rest of my life, if I went HYPO from RAI or surgery, I would have to. And, I would still have the auto-immune disease.
Sorry to go on and on. Good Night.
Still has given some great suggestions.
I would tell you that re looking over your 'corrected; labs, that Endo #1 really should have kept you to the same dosage amounts daily rather than alternating doses every other day or even taking a larger amount one day and then drop to half the amount the next day (Endo #2) which makes the thyroid very confused in trying to find the balance to keep it's metabolism nice and steady and holding in one position.
I really hate to say this, as the FT4 has not been tested for nearly five months ago, the MMI (Methimazole) doses should not be changed without knowing what the latest FT4 levels are. It is time to get new labs to figure out the correct MMI doses to take.
Ideally once the FT4 comes into range, the MMI doses amounts should be the same steady daily doses all the while to keep the FT4 at the upper third range to feel best there at.
Because it has not even been a year since the MMI was started, going from a three times a day daily dosing to once per day dosing also might have been too much with the yo yoing symptoms.
I recall when I first began with the doses reductions with the MMI (many years ago), I had to still stay with three times per day reduced dosing for a long time before my TSI antibodies would drop and I began finding what dietary and environmental triggers I was reacting to. Then I was able to do a twice a day dosing followed by where I am at currently with a small (less than 1.25 mg per day MMI) dosing.
My current environmental triggers are that with having MCS (multiple chemical sensitivities) exposures to people outside of my home wearing strong perfumes, deodorants, hair products, lotions, etc. as well as to any chemical scents coming from foods being cooked that are not organic and non-GMO to smelling things like roofing tar and new tires. You get the idea.
I have noticed that the more I am exposed to the outside world away from home, the more reactive my thyroid is. Having no choice I must sit far back away from others into one corner of the room in order not to feel bad.
EMF is another issue I face daily along with the WiFi which makes me feel poorly. My thyroid gets wonky from the EMF. I do what I can by taking Magnesium to combat these problems.
Anyway, for anyone with GD still new to the game and still taking the MMI (or PTU) should work on labbing every four to six weeks (at least for awhile) along with corrected healthy eating and using green products for household and personal, would need to work on keeping the FT3 at mid range and the FT4 at the upper third range to feel best there at.
{{{hugs}}}
I had my first endo appt 8.1.18. As soon as the labs from that visit came back, she prescribed Methimazole 15mg 3 times per day. I felt a lot better after a month on that.
After my 9.6.18 labs, she decreased it to 1x per day. I still felt good at this dose.
After my 10.2.18 labs, she decreased it to 1 pill, still 15 mg, every other day. Within 2 weeks I felt symptoms coming back, called, and she sent me for more labs.
After my 10.25.18 labs, she raised it back to 1 pill every day. After a couple of weeks, I felt good again.
It was after that visit that she said she thought my only option was thyroid surgery and wanted to see how advanced the eye disease was. At that visit, she wrote the ambiguous referral to the opthalmologist eye surgeon who turned out to be just a plastic surgeon.
Then I decided to get a second opinion. Endo #2 glanced through the past blood tests I brought to the visit, and said he didn't disagree with the treatment plan of Endo#1. But he wanted to have new blood tests to review before making an opinion. After those results came back, he decreased the methimazole to one 15mg pill every other day, and 1/2 that pill, or 7.5mg on the other days. Btw, both husband (dh) and I really liked this doctor. (He didn't have to look at his computer before giving an opinion.)
How often do you have TSI, TRaB & TPO checked? Endo#1 just checked them once in August and Endo#2 didn't check at all.
How often do you get the RAI uptake and scan? My internist sent me for those tests before I saw the first Endo, but I have never seen the results. I just made a note to myself to call the hospital Tuesday and get them.
I wonder why neither doctor said the daily dosage needs to be the same? It makes sense, and I have noticed since starting this new alternating dosage, that I don't feel as good. I called his office and told the nurse/aid/assistant, but she said he wanted me to continue it for awhile to get my system adjusted. My next appointment with him is the first week of April.
Only one uptake and scan. I would have NEVER done it as it is radioactive material in my body AND I felt horrible, tired and exhausted from having that in my body - it lasted approx. a week. (The tiredness) Also, MM told me that a blood test could have confirmed the GD - I didn’t need to do that test. (Stupid me - didn’t do enough research, in time) Also, THAT made me NEVER want to do an RAI 131 to knock out my thyroid because I felt so bad with just a tiny bit, I couldn’t image what I would feel like if there was much more. Ugh!
If it was me (and it was) I divided my dosages equally every day so there is more of an even effect on my thyroid. (I listened to MM over my Endocrinologist - and I like my Endocrinologist - I trust my dear friend, MM - she knows!!!!)
Matte, YOU know your body. You know how it feels when one day you take 15 mg and the next half.
Let’s do some math - add the amount of times you take the 15mg and the times you take the 7.5 mg for the week. What is that approx. amount of mgs? Is it 82.5mg per week or is it 75mg per week, correct?
(It is 11.78mg per day or 10.71mg per day)
what do you think would happen if you took 10mg per day with a Thyroid Calm (the liquid supplement I used) I swear by it. You can take it up to 4x a day. It is NOT medication. It naturally helps the GD symptoms to calm down. This is ONLY a suggestion.
I KNOW we should listen to our doctors BUT sometimes it is better to talk to someone who has gone through what you have gone through. And, that is why I listened to MM.
Having you take alternating dosages is going to have you yo-yo ing which is NOT a good feeling. (I still get them, but not intensely)
Think about what I said. Take Care. PS Thyroid Calm is made by Herb Pharm (just read the reviews - it says it all)
Matte needs to get new labs as the last ones from 1.30.19 are too old now. Plus the FT4 was last tested last year on 10.25.18. Way too long ago.
{{{hugs}}}
Ideally we want to take the same amount of ATD (antithyroid drug) doses daily to keep the thyroid nice and steady and not to yo yo hypER/hypO.
Doctors don't tell people this because they don't know and even understand how many of us with GD feel our best with the FT3 at mid range and the FT4 at the upper third range in order to avoid many symptoms. They will tell their patients that being within any part of the lab reference ranges that we should feel fine there at. Not so.
{{{hugs}}}
I agree with MM. Get new labs and take it from there.
How can a doctor medicate you properly if they don’t know what your thyroid hormones levels are. (Sorry, I wasn’t paying attention to your lab dates). Have your labs done every 4-6 weeks to keep a close eye on your levels. This will help you manage the GD.
Take Care.
He also said that a lot of people report that selenium helps with TED. Have any of you taken it? If so, how much, what brand, and where do you get it?
Since my brain is going through a fog, right now, google the possible vitamin and mineral deficiencies when you have GD. I know there is a list somewhere. Selenium is one of them.
About your Opthalmologist saying, they are 2 different things and let it take its course. I respectfully disagree with your doctor. If it wasn’t for the auto-immune disease (GD) you wouldn’t have TED. I believe it can be a manifestation FROM Graves Disease and then there are people who have GD that don’t get it.
All in all, however it manifested, there are things we can do to support our immune system to calm the inflammation that is going on in the body and specific to the eyes.
No pun intended, I clearly see my issues with sugar make my eyes feel gritty feeling.
As for your TED, I feel for you. Seeing my dad go through what he did with TED, upsets me. If we knew what he could have done instead of getting eye surgery or having the RAI131 (which made it worse) he would be in better shape than he is now.
So, letting it take its course is a good idea - but watch the foods and products (triggers) you use.
Take Care.