[Naisly]

#1059538

Your doctor did his/her job, now its up to you. Ok, so you walked away with a small bottle of pills – Now what?

There are a few things you can do to help get your levels under control:

Taking Your Medication, Be Consistent.

• Have your blood drawn the same time of day. TSH fluctuates throughout the day. TSH is highest in the late evening/early morning hours and lowest in the late afternoon/early evening hours. Be consistent.
• Take your hormone replacement medication after you have your blood drawn. This is because your FT4/FT3 levels will spike after you take your medication.
• Take your medication at the same time each day, This holds true for both ATD’s and hormone replacement.
• When you start your medication, continue to use the same brand, from the same pharmacy. Brands are slightly different. But, sometimes people will switch brands if they are having a hard time regulating their ‘set point’.
• Some people feel better (nauseous, upset stomach etc) if they take their ATD’s with food, some without food.
• If your taking hormone replacements then I believe you should not eat with these, same with multivitamins. I believe this is because the synthetic hormone has a harder time to metabolize with food/vitamins. This is definitively something to discuss with your pharmacist.
• Have patience when finding your set point. It can take months. And just because your labs show your in the ‘Normal’ range, doesn’t mean this is a good spot for you. This means you may still have hypo/hyper symptoms, but don’t get discouraged.

Environment Triggers.

I’m going to repeat what I said in another post. Only because I think it is important to stress that antibodies are produced when your immune system is stimulated. In this case, TSI. Your whole immune system needs time to heal, because hyperthyroidism affects every system in your body – Heart, liver, kidneys, nervous system, bone and soft tissue. These are quite sick at the moment and need the chance to recover.

Some of the readers out there might not know this part and this is where it gets a tad tricky. Euthyroid means normal thyroid function and does not mean Graves disease is in remission (The thyroid gland is the victim, not the cause). For Graves to be in remission, you must not have any (or very very little) TSI (thyroid stimulating immunoglobulin) which causes the production of the thyroid hormone. TSI is the direct cause of hyperthyroidism in Graves’ disease and TED. TSI will continue to be elevated if there are still environmental triggers. This is why some research states its best to stay away from processed foods, cigarette smoke (and why cigarette smoke can increase likely hood for TED). Stress is also included in this as we have read all the research lately about this.

I also wrote this to try and explain FT3 and FT4 have a look.

So my suggestion to all the readers out there is get as much info as you can about TSI as I only condensed this last part. Its always best to keep asking questions, talk to your dr’s, and be your own advocate.

So now we know a little bit about TSI which by reading what I just wrote, is why it is important for remission.

Ok, so this is my take on it all. I have read remission can occur any where from 18% – 80% in patients and I have an idea why that is. I don’t think many patients have been given the proper knowledge about the disease and assume they take a pill every day, get to euthyroid (mistakenly thinking this is remission) then stop taking the medication assuming they are in remission, yet found themselves bounced right back to hyper. Nor do most people take into account the environmental triggers and continue to eat the same, smoke the same, keep the same stress levels and expect that little pill to do it’s magic all on it’s own.

So depending on how you live, your ‘environmental triggers’, Shirley is right in saying it can take years for your TSI levels to normalize this is why lifestyle changes are important for your immune system to heal, but if the case was your TSI was still high, many people do fine staying on a small maintenance dose of ATD’s for many many years. I know someone who has been doing so for 30+ years, and look at Kimberly here, she has been on it for 5 years?

• Just because your euthyroid, doesn’t mean your ready for remission. You must be both euthyroid as well as no TSI.
• Eat Healthy – Like grandma used to cook.
• Stay away from procesed foods like – Red dyes, artificial sweeteners, artificial flavorings, high amounts of iodine (recommended daily dose is 150mcg), MSG, Aspartame.
• Stay away from cigarette smoke.
• De-stress yourself. Relaxation techniques include prayer, meditation, yoga, tai chi, bubble baths, whatever helps you relax.
• Try to not take on so much responsibility, hand some over to your partner. Even if he can’t do it as perfect as you want, let it go. At least the dishes got done. Positive thinking helps a lot.
• Try to stay away from stimulants such as caffeine, alcohol , some over the counter medication, sugar.
• Beta-blockers are not just for heart rate, but for the nervous system as well, brain function ie: Headaches, anxiety. Also used to lower the conversion of FT3
• Adults need 150 units of iodine daily, average American has 450+ daily.. Iodine will only fuel your hyper symptoms. There are lots of foods with added iodine including multivitamins.
• Try to stay away from fluoride.
• Some people feel better when they eat less gluten.

Have these checked with your doctor periodically:

• Calcium
• Vitamin D
• Iron
• B12
• Cortisol and Adrenal Function
• Cholesterol

Interesting fact about cholesterol is that back before there was tests for hypothyroidism, they used to check these levels, and if they were high, they would treat patients for hypo. So, most people who have gone hypo must have this checked.

About labs – This is what I do and it saves you and the doctors tons of time.
Get a requisition from you doctor for 6+months, check it and make sure it includes the tests you want done and ask your doc to make it every 3weeks (just incase) Find a lab in which you can access your labs on-line, this way you don’t need to run to your doctor every few weeks, you can actually access your labs and if you feel your levels have changed drastically you can call your doc, and he will have them as well, and more than likely he will see you sooner than later.

You will also have labs to talk about with your doc next appointment. Your doc might be happy to do this since it helps him as well.

Doctors

AzGravesGuy had said on an other post http://gdatf.org/forum/topic/43359/

And what I wrote:
http://gdatf.org/forum/topic/43353/?page=2

Tips:

• Endos: Walk into their waiting room, look around and see if they have literature/pamphlets etc on Graves Disease, if they don’t walk the other way.
• Your Pharmacist can be your best friend.
• ENT’s are a great choice for thyroid disorders in place of endos.
• Internists are second.
• And above all – You are hiring them to do a job – Is it fair they get paid to make you NOT happy?

A Journal.

Finally, keeping a journal will help you to see patterns, your triggers. Start small if you would like. Add stuff like, how you feel, bp, labs, what you ate, body temp etc. An example would be:

Dec. 01/12
5 cups of coffee in morn
Had a big mac for lunch – too busy
Talked to the in-law
Very tired at the end of day
bp 120/95
temp 97.6

Add more, or less, whatever you feel comfortable with. But the point of this is to see what are YOUR triggers. Perhaps you see a pattern of when your in-laws call you feel worse <---can happen to the healthiest of us. And if that was the case, either let the machine pick it up or tell your partner this - "If you don't want me to be a @#$% tomorrow, then I suggest you answer your parents calls." So yes, you will have both good and bad days – but soon enough you will have more and more good days. Just try and watch your triggers. Educate yourself, because you are in control of your own health and no one knows your body like you do. Hope this helps. ~Naisly Edit: Added to the journal.
Edit: Added more tips.
Edit: Added Doctor tips.

[vanillasky]

#1175493

Thank you, Naisly! Wow, I am learning alot and I have some very bad habbits here.

First of all, I love chocolate! I crave it. have to have it several days a week. So this makes Graves’ worse?

I love diet soda, diet coke, diet pepsi, diet canada dry gingerale – all have aspartame in it!!!!!!OMG!:rolleyes:

Stress is a big factor for me. In-laws are gone but still some relatives bug me.

Have sleeping problems, I think because of menopausal night sweats. I know I need more sleep – can’t seem to get it. Doctors won’t give me Ambien or any of that.

Take Klonopin for anxiety but I hate it. Makes me loopy. Any suggestions?

[Naisly]

#1175494

Oops I forgot chocolate is a stimulant as well. Don’t worry too much, all you can do is try. And sometimes sneaking in a bar every once in a while isn’t going to hurt, because after all, it does help alleviate stress, just don’t become reliant on it too much.

Aspartame complaints accounts for about 70% of complaints to the FDA. Just something to keep in mind.

Sleep is very important part in healing of course. But I suppose since we are so hyper and our metabolism is going a hundred miles per hour this can be quite difficult. Our minds are probably over loading on everything we did/have to do as well.

Maybe try to de-stress yourself before bed? Like low lights, no TV/computer, reading helps a lot of people relax before bed.

I remember long ago a doctor once told me to have a note pad next to my bed and write out a list of things I want to do the next day. Apparently this helps to remove it from our mind. I don’t know about you, but I pretty much lay there forever going over and over the things I should have done that day, and need to remember to do the next day.

My mom swears by a ‘salt lamp’? I have never used one personally.

Also, not long ago there was a big stink on the news about too much radio waves?(too many wires next to our bed) in our bedroom, which disturb our sleep patterns. I really didn’t pay attention to it. But I know there were parents on the news screaming about too much in schools as well. Who know, might be worth a shot.

~Naisly

[mvk]

#1175495

Naisley,

Thank you for your synopsis of things we need to do to keep our progress going with Graves disease. It is very helpful. I have changed a lot of things in my life since my diagnosis and continue to try to do the best I can do for my health and well being. It isn’t an easy task but of course there are so much worse things that could happen to you. I find that you just have to focus on Graves so much in your everyday life and it gets frustrating for me at times. The thing that probably gets to me the most is people don’t really think you are sick because you are functioning. I am not one to remind people that it is not really all that easy everyday. I am back exercising which really feels great but need to add an element of yoga and/or meditation to my daily list. I also need to do the journal. It sounds like such a pain in the butt to do it but like you said you start seeing patterns and that would be a good thing.

mvk

[Bobbi]

#1175496

Only one study that I know of showed the 80% remission rate. It was never duplicated. It is not considered even remotely relevant to our treatment options. Remission rates in the U.S. and comparable countries range between 20% and 30%….for a first remission. Second remissions are considerably more rare statistically.

[Naisly]

#1175497

Hi Bobbi,

Quote:

Ok, so this is my take on it all. I have read remission can occur any where from 18% – 80% in patients and I have an idea why that is. I don’t think many patients have been given the proper knowledge about the disease and assume they take a pill every day, get to euthyroid (mistakenly thinking this is remission) then stop taking the medication assuming they are in remission, yet found themselves bounced right back to hyper. Nor do most people take into account the environmental triggers and continue to eat the same, smoke the same, keep the same stress levels and expect that little pill to do it’s magic all on it’s own.

That wasn’t my point. My point was not many people understand the process and assume because they hit the 12-18 month mark that they are in remission. You would need little to no TSI to be in remission, and if this wasn’t possible, then it would be ok to stay on ATD’s for a life time.

Btw Bobbi, a smile goes a long way

~Naisly

[Carito71]

#1175498

Thank you Naisly. A healthy lifestyle will help our immune systems no doubt.

I eat chocolate but I stick with dark chocolate and I don’t eat it every day. I’m highly allergic to things that are too processed so I watch for that. Coffee only on the weekends (and I’m trying to cut that also).

Many things can be triggers when we are highly allergic so I try to stay away from dusty things, mold, and processed foods. I’m allergic to carpet so we don’t have carpet at home (and I’m so glad that we don’t have it at work either). Allergies are immune related.

Also, trying to minimize infections is important so I make sure I take my vitamin C. I floss my teeth daily (or at least every other day) and visit my dentist every 6 months (it sounds very common sense but some people don’t do this and it is very important). Hand hygiene is also very important to prevent infection. Infections can weaken the immune system and it is believed that it can lead to autoimmune problems. Graves is an autoimmune problem.

Exercise helps lower stress, so also a plus.

Keeping a journal is a great idea. I’ve been keeping a type of one but I need to start on something more detailed. I do keep track of my labs and I’ve even made a chart to see how things are changing.

As for remission, I’ve read the same thing. One is not in remission unless the TSIs are very low or gone. If one is euthyroid and stops the Rx while the TSIs are up the TSIs will continue attacking and the thyroid hormones will increase again. My Endo also told me this last month.

Also, I believe there has been research done that showed 50% remission when taking Methimazole for 5 years. I’m assuming this is also with TSIs that are very low or none there at all. This is, if I understand it correctly, what is done in Europe. In the US is only 2 years and the % is 20-30% I believe. It makes sense for it to be low at 2 years for perhaps during that time not many have gotten rid of their TSIs.

I read somewhere a few months ago and I don’t remember exactly where but I read that it is thought by some that remission might be achieved by being on the Methimazole or by being euthyroid for a while. If I remember correctly remission had been achieved by people euthyroid on Methimazole and by people Euthyroid on thyroid hormones after a TT. I have to look for the article because I don’t remember the details so please don’t quote me.

Thank you for the information. There is no magic pill to heal the immune system but we can help it heal by taking care of it. It takes time to heal (some times lots of time) and the effort on our part.

Caro

[Naisly]

#1175499

mvk
I glad it helped. This is what they consider an invisible disease. I almost get the feeling that not only the people around us, but we graves patients have a hard time with this as well. Really believing how sick we are.

Carito71
Thank you for adding your thoughts as well. You are so right in saying we need to heal our immune system and regardless of treatment, it still takes time.

I have been blessed with no allergies, I just couldn’t imagine what it would be like to have GD and allergies.

~Naisly

[Kimberly]

#1175500

Just a quick note on remission rates…

The 20-30% figure is for the U.S.; in Europe, remission rates on ATDs are 50-60%. Patients of Japanese origin tend to have even higher remission rates. It would be great if researchers would spend some time trying to understand these differences!

I have not seen specific stats on patients going through a second round of ATD therapy. There was one study out of France that noted that repeated rounds of ATD therapy improved the *total* number of patients who achieved remission, but I do not believe the stats were provided as to the additional % that achieved remission with each subsequent round:

http://jcem.endojournals.org/content/97/1/110.abstract

[Naisly]

#1175501

I thought I would bump this up again since I have added a few more tips to help you all out.

[mslux]

#1175502

Thank you Naisly. Very useful. And you’re right. A smile does indeed go a long way

Ms Lux X

[Gabe]

#1175503

Thank you for re-posting. I’m new to all this and your tips are very helpful. I start part time from a very stressful job today so I’m hoping to help some of my environmental triggers with this one huge step (for me).

[Naisly]

#1175504

I am glad I can help!
I hope your job works out for you.

I did add some doctor tips as well.

[mslux]

#1175505

Do you have flouride in the water where you are Naisly? There’s a big controversy here about it currently. It can apparently have a poor impact on Graves.

[Naisly]

#1175506

We do have fluoride in our water where I am at. Last I heard, the Canadian Government wanted to remove 95% of fluoride from drinking water by 2010. Not sure if they managed that or not.

But your right, it is a controversy here as well and the US. I am guessing it is due to the fact we were told years ago that we needed this in our water, I suppose one would say – evidence-based medicine.

And to be honest, I really didn’t give it a second thought until I got GD. I mean, I always thought fluoride to be a natural mineral and found out it is not. Years and years ago, they used to use fluoride to treat hyperthyroidism.

Your right though, fluoride is bad for your thyroid.

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