[shakira7]

#1060268

Hi everyone,

The more I read this forum and other Graves disease relevant articles online, I get the impression that the ATD (Methimazole, for ex) is only a temporary relief of Graves Disease. My remission lasted 3 months and now I am back on Tapazole 5mg.
Is permanent remission possible, after being on ATD?
I’ve not yet heard of any case. It looks like most people have a relapse, be it 3 months, 1 year, 5 years or 10 years at the longest.

If this is not a permanent treatment, then why are doctors even suggesting this method in the first place?
I ask this, because it looks like a majority of people end up doing RAI or Thyroidectomy.
Once the person choose one of the above, then they seem to go through a permanent remission – all they have left to do, is to find their hot spot with Synthroid or other similar medication.

I have a consultation with an internal medicine doctor this thursday, to seek a 2nd opinion – I’m not convinced that my current endo is doing a good job, and I may have to find another endo/internal medicine doctor.

He is against the idea of thyroidectomy, since I’ll have to take Synthroid for the rest of my life.

Wouldn’t it make sense that everyone diagnosed with Graves, are given the 2 options from the start – RAI or TTX?

What do you all think about this?

Shakira7

[snelsen]

#1181664

Hi shakira,
Your observations are correct. But here is some more information for you to confirm and discuss with your endo appointment next week.
The following is intended to answer your concerns, and provide a bit of history, too.

When we have our diagnosis of Graves’, we are pretty darn sick, the reason being the crazy amount of thyroid hormone that we are producing.

1. So the FIRST STEP is to get us SAFE by taking an ANTI thyroid hormone, to decrease the overproduction of it. Think of our body in really dangerous overdrive. And the ATD is the way to do that. There are three goals for doing ATD first, the most major one, getting us to a safer place. beginning with ATD.

2. The second is, regardless of what choice we end up doing, ATD, RAI or considering continuing on ATD, is that with RAI and TT, it would be dangerous to move forward right away with either of them. With the thyroid gland in abnormal state, for RAI it would be more difficult to determine the dose. Plus,
the reason for #1. It is more dangerous to proceed with RAI or TT on a person who is very sick, with fast heart rate, higher blood pressure, weight loss,frequently psychologically unstable, feeling crazy, (cause of Graves’) and really not in very good shape to make or agree to much of any decision, before the hormone is decreased. And, to have a TT, it is safer and recommended to decrease the size and vascularity of the thyroid gland itself, which can be done by beginning ATD’s, and following up with some potassium iodide drops (decrease side of gland) before the surgery. No thyroid surgeon-or ANY surgeon, for any reason!) would elect to do any operations on a patient with tachycardia (a very fast heart rate) and high BP. So goal is to get us safe, and feeling better. Many on this post reflect back on how crazy, argumentative and even hostile they felt when very hyper. NOt a great time to make a decision.

Some history, to respond to your question re ATD’s. THey have been around a long time. THe standard of care for ATD’s has been to do what I have mentioned above, THEN proceed to one of the other two options. The historic reason not to continue with ATD’s is that they have some side effects that are worrisome, primarily decreased WBC, significant allergic reactions, and incidents of liver involvement. These can all be watched by labs, but they are definitely risks. So the medical profession regarded them as significant risks, considering ATD’s a temporary treatment. And, before RAI was developed, and a way to establish doses, and before ultrasounds were developed (early 1960’s) and CT (cat scans) were developed (1971!!) there was simply a lot less information about Graves’.
Nuclear medicine was first identified in 1931, when E.O Lawrence invented the cyclotron
” Then, the birth of nuclear medicine can be dated to the discovery of artificial radioactivity in 1934 by E. O. Lawrence.1″ Reference is http://users.phys.psu.edu/~irina/papers_and_pres/Nuclear%20Medicine.pdf

This is a VERY LONG WAY of saying that back in the 1950’s there was one choice. Thyroidectomies. There was not enough information to keep people on ATD’s, for thought to be too much of a risk, and RAI was not a standard of care at that time. The thinking then was to do a PARTIAL thyroidectomy, leaving a LITTLE bit of tissue, thinking it would produced much less, and in may cases, the right amount of thyroid hormone, so a person would NOT have to take thyroid replacement for a long time. Now, the thinking has changed to remove the entire gland, and treat with Synthroid (been around for a very long time_ so you and the doc know where you are withe the dosage, and do not have the added variable of not knowing just how much the gland is producing. In summary, easier to manage for the docs. In my experience, I was euthyroid (just fine) for about 30 years, before beginning to need thyroid hormone supplement. And it coincided with getting older, and especially with women, they do not have graves’. but do need to become a bit hyPOthryoid, in their 40’s or 50’s, and end up taking thyroid replacement anyway.

In answer to your question,

shakira7 wrote:

If this is not a permanent treatment, then why are doctors even suggesting this method in the first place?

The short answer is to keep you safe.

In answer to your question

shakira7 wrote:

Wouldn’t it make sense that everyone diagnosed with Graves, are given the 2 options from the start – RAI or TTX?

The short answer is it is bad medical practice and dangerous for you to do either RAI or TT when we are hyperthyroid.

REgarding ATD’s the thinking is changed a little bit recently. And you can find plenty of end’s who do NOT agree with this, and don’t do it. Right now, the science is in flux, with no evidenced based long term studies of outcomes. So now there ARE people who have stayed on ATD’s, Kimberly, our facilitator, is one, and Jake, who had Graves a log time ago, has achieved a remission after his longer use of ATD’s. But there are more people who don’t and people who stay on ATD’s who become hyperthyroid again, will need to decided between RAI and surgery.

Incidentally, with both RAI and surgery, you DO need to take thyroid replacement the rest of your life. From what I understand about RAI, they make their best guess (calculation) about how much to give, based on size of gland, and some other tests. Sometimes it is not enough, and people on this board have become hyper again, and have to need another round of RAi.

I’m sure Kimberly and others will chime in to amend or correct what I have said, hope so.
Shirley

[shakira7]

#1181665

Hi Shirley!
Thank you so much for all these helpful information.
Wow, you know so much about the Graves Disease. I guess we all become an expert with our own medical condition.

Ok, so I see why we all start with ATD.

Deep down, I have a wishful thinking that I can get over this Graves Disease just with ATD, but I’d say that would be almost a ‘miracle’, if I ever manage to go into remission.

I will try to get my “internal medicine doctor” to agree on my plan on getting the thyroidectomie. It seems like everyone who’s gone through thyroidectomie is very happy with their decision. I guess, after going through the Graves up & down with ATD over a long period of time, they must feel relieved to have gotten rid of their thyroid gland.

Thank you again, Shirley.

Shakira

[adenure]

#1181666

Just my personal 2 cents… I had to stop taking methimazole (5 mg) after 7 weeks because of liver issues with it. I think, in an odd way, it was a blessing in disguise. Fortunately, my levels were normal after those 7 weeks, so I chose surgery and am really happy I did. You’re right, I never have to worry about being hyperthyroid again. Granted, I was slightly hyperthyroid recently bc my Synthroid was too high. Easy fix though- just lowered the dose 2 days a week and kept my normal dose the other 5 days, and now I’m fine. No big deal. So, although my plan wasn’t to jump into a definitive treatment so soon; I think having to stop methimazole ended up being a good thing.

[Kimberly]

#1181667

You’ve already received some great food for thought! My only addition to Shirley’s post is that James is the facilitator who is currently in a 10+ year of remission; Jake was treated with RAI.

As someone who has been on Anti-thyroid drugs for 6+ years, I absolutely think that doctors should offer up all three treatment options, as there is no one perfect option – they ALL have risks. There seems to be more support in the medical community for longer-term use of anti-thyroid drugs. Both of the endos who presented at our Baltimore and Chicago conference this year mentioned that long-term use of ATDs was an acceptable alternative. Bottom line, this is a decisiont that you need to make after doing your research and consulting with your doctor about any special considerations that might apply to you. For example, are you pregnant or breastfeeding? Do you wish to become pregnant in the near future? Do you have eye involvement? Do you have existing liver issues? These are all factors that would go into the final decision.

[shakira7]

#1181668

hello again everyone,

I am back after a rock-n-roll week dealing with clinic secretaries not returning my messages, hospital that forgot to do my thyroid level test, doctors running behind the schedule with appointments…etc.

I saw an internist (internal medicine) today. To my surprise, she seemed very knowledgeable in Graves Disease, perhaps even more than my current endocrinologist.

Unfortunately, the hospital omitted thyroid testing, but did the rest of the blood tests…for a thyroid patient. I saw the doctor anyhow.

As for my swollen eyelid, she is sending me to do a cortisol level test. If the result rules out cortisol, then she will conclude that it is due to thyroid.

My white blood cells have decreased, probably as a result of Methimazole. Right now, it’s 4.0 and I am below the normal range – leukopenia.

She suggested thyroidectomie, as in my case, RAI can put me in a higher risk for TED.

@Kimberly, to answer your questions –
Yes, I already have swollen eyelids since September, and who knows how this is going to unfold.
No, I don’t plan on having children. I love kids as long as they have their own parents, ha ha.

In the meantime, my endocrinologist called me to reassure me that 4.0 white blood cells are not dangerous, so that I continue my Tapazole. His blood test request has always been for TSH, T3, T4, and Antibodies. This time, he told me he will send me another blood test request for white/red blood cells count. He is very very nice as a doctor, but I feel like I am telling him how to do his job.

Part of myself wants to give myself a chance for another remission, and see how long it will last.

However, if I can get an excellent ENT surgeon, I think it may end up being the best choice for me. She gave me the name of the surgeon, and I am waiting to get an appointment with him. I went online and researched his profile; he seems to have an excellent reputation among thyroid cancer patients and I hope he takes hyperthyroid patients as well.

This doctor mentioned several types of Synthroid, and depending on how my body reacts, we can change the brands should it be necessary.

In the end, it was worth waiting for this doctor for almost 1H15.

[Kimberly]

#1181669

So glad that you found a doc you are comfortable with…sounds like the appointment was worth the wait!

It certainly doesn’t hurt to schedule the consult with the surgeon, just in case you decide to pursue that option down the road.

I had one issue a few years ago with WBC count just slightly below the normal level, and doc was OK with me continuing on the methimazole. (It was back to normal at the next test). However, be on the lookout for signs of a more severe WBC issue (sore throat, fever, mouth sores) and definitely call the doc’s office ASAP if this happens.

Take care!

[HyperLee2]

#1181670

I continue to treat GD with anti-thyroid medications, off and on for the past six years. Go on for several months (PTU, then Methimazole) then go into Remission (which is so Great!!) for up to 2 years at a time. Now it seems after six years, my thyroid seems to be “burning out.” Picking ATD’s to treat Graves has had it’s ups and downs….It has been a roller coaster ride. With some smiles, and lots of tears during the active disease times. Frustrating, but I just don’t feel like RAI was or is right for me.

[heidle12]

#1181671

So to get this straight… I appears that many people with GD has this issue with the TSH levels going up and down. Is this normal with GD? And some of you choose the RAI while others are not.

I am sooo annoyed with my levels. I was diagnosed Jan. 2010 with GD. I was put on methimazole and everything was fine until I chose to try to treat with natural medicine in 2012. I was put on Thyroid II in conjunction with the methimazole. The thought was as my tsh levels rise my conventional doc will decrease my methimazole. All was working great; I was completely off the methimazole. But then Nov. 2013 my tsh levels went really low, so I went back on 5 mg of methimazole. My next tsh level in Jan 2014 was a 25. So now I am not on anything at all as I wait for my levels to go down. They were going down nicely until just recently. Sept 2014 TSH was 0.8 Nov 2014 TSH level was 8.8.

So is this fairly common for the tsh levels to fluctuate like this? I find it increditbly annoying. I can’t lose weight for the life of me – I am in the military and need to keep it under a certain amount – I know the military won’t punish me for this as its a medical condition that I am in the process of working out. Additionally, I want to get pregnant. I am 32 now and don’t have time on my side anymore!

[Kimberly]

#1181672

Hello and welcome! Some fluctuation is common, although certainly not the wild swings that you’ve been seeing. We are fellow patients, not docs, but here are a few thoughts…

1. Is your doctor only looking at TSH, or is he/she also looking at Free T4 and T3? TSH can remain suppressed in Graves’ patients, and is not a good benchmark for making dosing decisions. If your doc has been looking only at TSH, that can definitely cause wild swings.

2. You might try another round of methimazole without taking the additional supplement, as it’s possible that contributed to the wild swings.

3. Some patients actually have both Graves’ and Hashimoto’s thyroiditis. This is tough to diagnose, as many Graves’ patients have the Hashi’s antibodies but *don’t* actually have Hashi’s. Patients who have this issue end up needing very frequent labs and could occasionally have to flip between anti-thyroid meds and replacement hormone.

Take care – hope that you can get some relief!

[JEH]

#1181673

I achieved remission in 2006 after having used ATD since 1999. Then in 2014 my husband asked if I would go back to the doc because of the heat intolerance that continued for me. It created minor problems for us and he hoped the doc would have some suggestions. I had also put on some weight that I was hoping I could find a way to shed. The doc diagnosed me as now being hypo–strange with the heat intolerance–and put me back on T4 in August, starting very slowly and gradually so as not to throw me into a Graves relapse. I am stable now at 75 mcg daily and there may be some slight improvement in my weight and heat intolerance, but I don’t feel it is significant. I will continue with the T4 however for now.

My take is that we are all so different and the docs do the best they can with what they know, measure, etc. The most important thing is to protect your eyes and your heart by keeping the inflammation, bp and heart rate down.

Best of luck to you.

Jane

[Author]

Posts