Hi KathyB,

I was diagnosed 1 year ago. Also, I did not want to get RAI or surgery. I was told the same thing as you, right after they took the Uptake Scan to confirm that it was Graves Disease. It was VERY hard to wrap my head around all of this. I took a month off to research my options. I knew I had to move quickly because I heard that my condition could turn into something much much worse - thyroid storm. I was questioning everything in sight. Having this diagnosis scared me. I kept reading about people who didn’t go the route of RAI and surgery. Some of the stories sounded like they wanted to sell me their book or their products. It was confusing me of what was real and what was to sell me something. I took what I learned (natural things to do and eat) and incorporated it into doing that and taking my MMI. I, also, went from 10mg/day for the first month and as the blood tests were done every 4-6 weeks allowed the Endocrinologist to adjust the medication to less and less. My numbers pushed me over to HYPO, where I stopped for a month and then went back on a very small amount for the final month.

I am off meds. I will find out my new numbers in a few days for my next appointment.

I do not know what you did (other than the meds) since you were first diagnosed in July 2016. I am assuming your doctor is ONLY recommending meds to solve your thyroid issue. If you want to try something extra before making the final decision to do RAI or surgery, personally, I would do what I researched back in Feb. 2018. Change the way you eat, what you use for personal products, what you use for cleaning products and what you come in contact with inside and outside your home. Also, relaxation or meditation exercises.
If you look back on previous articles on this forum, I mention foods I ate, products for personal use and cleaning use. EVERYTHING makes a difference.
If you STRICTLY conform to this, you will know for sure if it doesn’t help, then you have an educated decision on doing RAI or surgery.
Be proactive in what you need to do to avoid these procedures.
Everyone is an individual when it comes to GD. My numbers started at .001 T.S.H. And 74% absorption of iodine to my thyroid.
You can do this. I didn’t listen to my first doctor. My second doctor told me my thyroid can be calmed.
Do whatever you can to keep from these procedures - being HYPO is no walk in the park, either.
Take Care.

Hi,
Thank you very much for your reply.

I have not done anything other than take the meds and Acetyl-L-Carnitine for the past 2.5 years. Looking back on it - Big Mistake.

Is there a list of foods to avoid? I thought there was a PDF but I cannot find one. Like you said, there are other sites out there but they are trying to sell their books and vitamins. It's difficult to find a place you trust to get info. I've found this site, the Living with Graves site and the Elaine Moore site. Three very trustworthy sites.

My next set of labs is 2/26/19. I'm hoping with the changes I'm making, I will see some improvement.

If the Dr. is still pushing RAI/Surgery even after some improvement, I will seek a 2nd opinion.

Again, thank you for your help. I will keep you posted on my progress.

Hi kathyb:

Are you having symptoms? Is this doctor you are seeing is trying to get the TSH up? If so, find another doctor as this one should be aware that Graves' Disease is an autoimmune disorder where thyroid antibodies are involved. Your thyroid antibodies is what is keeping the TSH low.

Your FT4 is at the upper third range and the Total T3 (it would be better to get a Free T3 test) is fine. I tell people to aim for their FT3 at mid range and the FT4 at the upper third range.

Please keep a small notebook to record what is consumed and what household and personal products are used to tame down your thyroid.

I had to go organic and non-GMO with my diet and go 'green' with the household and personal products used. Also lately I've needed to avoid many people out in the public who have too much 'stuff' on them.

The less chemicals, preservatives, and toxins are used, the better off we are with our autoimmune disorders being out-of-control. We all have our own triggers different from others on what sets us off. You will need to find yours.

Acetyl L-Carnitine should be fine to use.

{{{hugs}}}

P.S. You would want to take just the 'right' amount of MMI to keep the FT4 at the upper third range and the FT3 at mid range.

What are the TSI and TRAb antibodies like?

Hi,

Thank you for the help.

My doctor has been trying to get the TSH up since I started this journey. It went up a couple of times but went right back down. I've had the T3 and T4 go into the bad range a couple of times too.

I am having symptoms again. Mainly anxiety. I can't seem to shake it.

I have not had TSI or TRAb tests. I will ask my Dr. to do these for my next labs at the end of the month along with a FreeT3. If she refuses, I could ask my primary case physician to do that for me.

I eat a lot of sugar and I know it's time to cut that out of my diet.

Again, thank you for your help.

Hi:

I am sorry. Definitely find another doctor as this one doesn't understand the roles of positive thyroid antibodies - the TSI and the TRAb to affect the TSH as the TSH will stay low for awhile.

Get that small notebook to carry around with you.

Have you researched thyroidmanager.org? If not I recommend this as another good place to gather info on thyroid disease.

{{{hugs}}}

KathyB,
It’s time to do some research. Google foods that bad for GD patients. Google foods that are good for GD patients. Keep a journal, like MM said, to figure out which ones do not agree and set off GD symptoms. You need to be totally conscious of everything. Filter water from chlorine. Don’t use Flouride in toothpaste. Watch salt intake. (Iodine can be found in foods and its containers) Processed foods aren’t good (commercially made bread has iodated salt in it) Cut out processed foods. Cut out gluten. Cut out dairy. Your immune system is approx. 80% of your gut. What you eat effects your immune system. What you apply to your body has an effect on you. There are so many triggers. I stay away from SLS - Sodiul Lauryl Sulfates. It’s in so many products. I do not eat meat that has GMO, hormones and steroids.
When I started all this - I went cold turkey on almost everything - A. I. P. Diet and cutting out the rest. (Also, no drinking alcohol or smoking - which I don’t - can have a negative effect on GD - specifically the Eye issues) And it worked for me. My numbers went down and stayed down. And relatively quickly, I even had to stop because I was going HYPO.
If you set your mind to this, it won’t be so bad. It’s just a new way of living.
You can do this!

Hello,

I was diagnosed in 2013. I did not see the point in doing a thyroid uptake scan, when my labs clearly showed I already had Graves Disease. That was just another unnecessary dose of radiation that I didn't see the need for. After initially rejecting meds, I eventually started MMI after developing Thyroid Eye Disease.

I incorporated various supplements, researched using various resources and was able to put myself into remission 2.5 years ago, as well as reverse the proptosis in my left eye. Now, I get labs every 3-6 months.

As "mmztcass" stated any doctor who uses your TSH to dose you, does not know anything about thyroid disease. Even though my FT3 & FT4 are in range, my TSH continues to be very low. I do not go to endos anymore, as I found I know more than they know. This group was a valuable resource, as well as Elaine Moore. For now, use the MMI while you work to reduce your dosage and bring your FT3/FT4 in the upper 3rd range. That is where you will feel normal. I know, by my symptoms, if my numbers are going off. Please note that there is a difference in T3/T4 vs FT3/FT4. The later is the lab test you need.

It takes time and much resolve, but it's so worth it to not be dependent on medication. Incorporating healthful eating and personal hygiene products is also very, very important. There are numerous endocrine disruptors lurking everywhere!

Good luck!

Dsgreen5,

Well said!

What type of supplements do you take?

BTW, I’ll trade you.
My T.S.H. Is 5.38 and my FreeT3 & FreeT4 are in normal (but) low normal range.
I have had GD, one year and have been off MMI for a approx. 2 months. Have been tired, have gained back the weight I lost when first diagnosed and still have the stomach distress.

What do you do to get your T3&T4 to the upper 3rd range?

I get this is all a balancing act.

Any suggestions are helpful.

Thank you.

Hello. I am so sorry that you are dealing with this difficult issue.
I want to offer my sympathy and support.
Here is my take - for whatever reason your immune system is not settling down. I removed a major stressor - I change shift work and long hours in ER for a 8-5 job. I also make sure that I get sleep. Other than that, I am not doing anything special. My GD is 5 years old and I am basically in remission.
I feel that surgery and RAI are the last resort, but in your case high doses of methimazole for extended periods of time carry serious risks. Also, GD takes a toll on your digestive and cardiac system. GD can also lead to osteoporosis and that is a whole other issue to worry about.

I have to agree with your endocrinologist that it is probably time to consider drastic measures.
If there is nothing else you can do to calm down your immune system, the hyperthyroid sate has to be stopped.

Thyroidectomy has the following risks - you can potentially have damage to your parathyroids and Synthroid doesn’t always work well, so some people struggle with hypothyroidism after. The damage to parathyroids is usually transient.

With RAI there is a risk of damage to the eyes. If you don’t have Graves ophthalmology, it may be a better option. Plus, he can underdose you and preserve some function of the thyroid.

I hope you and your doctor will be able to find a solution you are comfortable with..
the latest studies suggest that methimazole helps put Graves in remission but it looks like your GD is being very stubborn.
Hugs

Hi! I've had Graves and Hoshimotos for 10 years now. Yes, I was "blessed" with both. My TSH is always low. As MM stated if the dr is just dx off of those numbers find a new doctor! My family dr wanted to do RAI as soon as I was dx but I refused and went to a specialist. I'm so glad I did. I was put on Methimazole 10 mg twice a day and after everything was under control I went down to 2.5 mg a day. My numbers were always on the lower side and after years of this my weight went way up. Now I'm dealing with issues of stopping the meds (on my own) and getting everything back under control. Everyone has to make their own choices but at this point for you I would not do surgery or RAI. Your numbers are not bad at all. Hoping the next set of labs are good!

Hi all,

I just wanted to give you an update. I did a lot of diet changes: no dairy, no foods with iodine, lowered my gluten, lowered my sugar intake. Trying to reduce stress.

I got my labs yesterday and there's definitely an improvement. I've got a ways to go but at least now I have some hope and when I posted this post originally I had no hope.

Thank you all for your help and advice. Fingers crossed, I'm on the right path!

Here's the labs:

Free T4 range .6 - 1.5
9/18/18 1.4
10/30/18 1.4
12/4/18 1.2
1/23/19 1.3
2/26/19 .9

Total T3
range 58.0 – 159.0
9/18/18 131.3
10/30/18 140.1
12/4/18 116.3
1/23/19 120.8
2/26/19 86.6

TSH
range .30 – 4.50
9/18/18 .04
10/30/18 .01
12/4/18 .02
1/23/19 .01
2/26/19 .06

Good to hear you are doing better. It’s good to know there are people here so we don’t feel all alone in this.
Take Care.

Excellent ! Hope you continue to improve .
Also, there are some clinical trials which show that Acetyl-L-carinite 1509-2000 mg daily has some thyroxine blocking properties. Try it for 2 months and see what happens. As far as I know, the supplement is harmless even to pregnant women.