[jfouts1979]

#1018258

I need some help making a decision. I have Graves Disease – hence the reason I am posting here…

I took Tapazole previously to get my levels back under control from mid 2007 to late 2008. By late 2008, my levels had returned to normal, and I stopped taking the Tapazole. In September of 2009, after having a spine surgery and remaining in a great deal of back pain due to nerve damage from the surgery, my levels were checked prior to a Myelogram, and they came back normal.

I started feeling bad in mid Summer of 2010 (this year). Had my bloodwork done, TSH came up at .43. Later had it checked again, and this time it was at .08. Just had it checked again, and it is at an undetectable level. Obviously, I need to do something to stop feeling crappy.

I know it is supposed to make you feel energetic (have too much energy), but I am exhausted all the time.

Tapazole would probably be a life long thing since this recurred according to my Endocrinologist. Tapazole has risks of side effects including but not limited to liver damage, hepatitis, liver failure, and a short supply of white blood cells.

Radioactive Iodine is normally the therapy of choice these days, but my Sister had major issues with the eye related problems associated with Graves Disease. She had to have Orbital Decompression surgery (where they pull your face down to make room behind your eyes for them to sink back more into their sockets). My Mom also had an eye issue, but her vision went from really bad to 20/20 after taking Radioactive Iodine. Because of the associated family history, my doctor does not like the idea of RAI because the result (in my family) seems to be completely unpredictable. I would be taking a 50/50 chance. My sister had extremely bad eye disease. Her eyes were almost popping out of their sockets.

Thyroidectomy is the third option. Permanent hoarseness can result, a scar on the neck, damage to the parathyroid glands.

How am I supposed to decide between 3 bad choices?

John

[snelsen]

#1063562

John, I am a regular poster on the board. Currently I am at the conference with about two minutes. In the meantime, go to the search engine and insert those words. Really, all of them are viable options, and it is entirely A PERSONAL CHOICE.
Some of us would never consider ATD’s. Some do not RAI . Some do not want surgery. I chose surgery, loved my choice.
People on this board will probably say the same thing about what they chose.
But do begin to read prior posts, you will learn a lot and get a lot of reassurance.
Shirley

[Bobbi]

#1063563

Hi, John:

I’m sorry your remission ended, and that you are facing this decision yet again. My own perspective on things may help (or not — but I’ll share it any way): ANY of our treatment options are better than remaining hyperthyroid. By far. Hands down. So while the options do carry risks (what medical intervention doesn’t??) they are far and away safer than the disease. With that in mind, you might be able to make a list of PROS (as well as the cons you so neatly itemized) of each treatment option, and it might help you to see which of the options you would prefer.

Also: RAI does not cause the eye disease. It has been shown that it may temporarily aggravate the symptoms of eye disease, in less than 20% of patients, but it does not cause it to occur. Taking a concurrent course of prednisone at the time of RAI has been shown to eliminate the temporary aggravation of symptoms.

As far as I know, our risk of developing the eye disease is NOT affected by our choice of treatment option.

In the hands of a good, experienced thyroid surgeon, the likelihood of complications is minimal. Less than one or two percent, if I remember correctly. But that would be something to check with a good thyroid surgeon.

And, the incidence of serious side effects to the antithyroid drug like tapazole is less than 5%.

I know the decision isn’t easy, and I hope you can come to peace with it before too long. Whatever you do, however, DO treat the hyperthyroidism. It is viscious on the body to let it continue longer than necessary.

[teacherhelper]

#1063564

I had RAI 3 weeks ago. It was very easy to do and so far I am not sorry about my decision. I think I’m starting to feel better. My mind is finally starting to focus more and tune into things. I felt pretty disconnected before. My doctor put me on PTU to counter any symptoms I might have and I think it’s helping. I have blood work in 2 weeks and see the doctor in 3. I hope you can come to a decision that will be good for you! This is a wild and crazy disease but I’m seeing a light. I had slight eye involvement but haven’t noticed anything different there. I’ve been very faithful with over the counter eye drops recommended to me by my eye doctor. I also have done a gel drop at night that’s helped a lot. This board has been great for venting, gathering information, and meeting new people who share the same thing. People do not understand how GD affects us and how our personalities change through no fault of our own. Good luck to you in finding what will work best for you!

Joanie

[Ski]

#1063565

Hi John,

Just adding one quick comment ~ if you can keep your thyroid hormone levels maintained on a very low dose of methimazole, the risk of the most dangerous side effects goes WAY down. Typically most people can remain managed on some continuous (usually very, very small) dose ~ remission is another animal entirely, and it’s true, the numbers for true, successful remissions are in the 30% range, but remission is only defined as a period longer than one year with normal thyroid hormone levels and no medication/supplements to maintain them. There are definitely people who achieve a remission but do, eventually, relapse. Maybe we need to define use of ATDs in two populations ~ those who are going for initial (or subsequent) remission, and those who are managed longterm on small doses of ATDs.

In any event ~ one caveat on that. The risk of the most dangerous side effects is highest in the first few weeks of taking the medication. That risk is the same for every patient, in other words, if you have taken the medication in the past without experiencing the most dangerous side effects, you are still as much at risk during the first period of taking the meds as a brand new patient. So make sure your doctor is testing your total blood count and liver enzymes at the start of any treatment phase with meds. After those first few weeks have passed, again, the risks go way down. You would want to keep checking periodically (ask the doctor how often they recommend, and/or signs to look for), but the highest risk is at the initiation of treatment.

This can be a good treatment choice *while you choose,* since you aren’t making any permanent decisions for yourself. You can see how it works for you to manage your levels on ATDs, and if that doesn’t work, you’ll have had some more time to figure out which of the other choices are more comfortable for you. Single most important determinant of future patient happiness: patient making their own choice for treatment.

Our conference last weekend reiterated some of the RAI/eye findings, and once again it was confirmed that, if a patient felt at great risk for being a patient who may experience eye changes following RAI, a short course of prednisone, beginning at a certain dose and tapering down a certain amount until the dose is stopped completely, removes the risk of increased eye findings following RAI. There has been some evidence that RAI produces more patients who experience a worsening of TED symptoms, though the population is rather small. With your family history, you may want to be cautious by using steroids with RAI (yes, steroids come with their own side effect risks, so all must be discussed and balanced), or by choosing thyroidectomy. As said before, thyroidectomy, in the hands of an experienced surgeon (one who does somewhere around 50 such surgeries in a year, or more), carries very low risk of the complications you speak about. Ask any surgeon what their complication rate is ~ don’t believe zero, and don’t let them evade the question, but the number should be very, very low.

Definitely take advantage of the search function here, we’ve had lots and LOTS of discussion on this very topic!

Oh yes, and welcome. ” title=”Very Happy” />

[RebeccaJT]

#1063566

Really helpful discussion. I’m pondering all the same questions John.

Can I ask, what are the possible implications of surgery for TED? A friend of my mum’s had surgery and had to take steroids as she had serious eye complications. She was a very petite woman and she looked horrific, she trebled in size and was very very ill. I read on here that someone said they’d have to pinned down and forced to take steroids again, they felt that strongly about it. So that bit is scaring me.

So are are eye complications rarer or about the same as they are for RAI? ie) which one carries less risk for the eyes?

Thanks

Rebecca

[snelsen]

#1063567

Hi Rebecca, and John..
I hope this helps you with your decisions, and answers some questions. Everything I have written below is from my own experience, plus what I have learned along the way.

Rebecca’s question-
"Can I ask, what are the possible implications of surgery for TED? A friend of my mum’s had surgery and had to take steroids as she had serious eye complications. She was a very petite woman and she looked horrific, she trebled in size and was very very ill. I read on here that someone said they’d have to pinned down and forced to take steroids again, they felt that strongly about it. So that bit is scaring me."

The fact that your friend’s mom had surgery, with subsequent steroids and eye complications, are totally unrelated.
TED is an autoimmune disease, situation. IT happens when antibodies are made by our bodies. In the case of TED, they specifically decided to attack the muscles of the eye. When this happens, some of the muscles enlarge, and loose their elasticity. They are not able to "stretch," or expand, which is their purpose when we look any direction. In this situation, there is also increase of orbital fat in the orbit of the eye. It gets really crowded in the orbit. The orbit basically a hole in our skull designed to hold the eye, the six muscles of the eye, some nerves.

Problems when it gets crowded. They happen in various degrees, and for some lucky people, they don’t happen at all.
1. Eyes bulge. More of the cornea (white part) is exposed.
2. The eyelids don’t "fit" as well. Eye is bulging. Eyelids red.
3. Tear composition changes, doesn’t do as good a job as keeping the eyes moist. On many people, the tears "spill out" which happens when the eye is really dry. So tear drops are important.
4. Double vision. If the lower (inferior) muscles are affected, it hurts to look straight ahead, or up, double vision results.
If upper (superior) muscles are affect, people have double vision when they look down, try to read.

Orbital Decompression-done for two reasons. An orbital decompression, removes the extra orbital fat which has developed, plus altering the size of the orbit, by various procedures to create more space for the eye.
Reason #1- If the optic nerve is compressed by all that crowding, there is danger of losing vision. This is evaluated by visual fields checked, plus color recognition. If the color red becomes less vivid, or if you begin to have "blind spots" in your visual fields, either noticed by yourself or by the visual fields test, it is very important to have the orbital decompression to save vision, regardless if the hot phase or the cold phase.
Reason #2- Not healthy for the eye to bulge way out, more risk to the cornea, plus greatly alters appearance of a person. Valid reason for it. When all the damage has been done to the eye, not changin, it is the time to consult about having an orbital decompression (OD) These surgeries are frequently followed by strabismus surgeries (eye muscle) to correct the double vision. After that, eye lid surgery to have the eyelids fit the eye better.

Thyroidectomy
No relationship between having a thyroidectomy and eye changes. None. You have Graves’ and not have TED. A small per cent of people CAN have TED without having Graves.

I had a thyroidectomy >30 yrs ago,TED over 40 years later.

Prednisone
Steroids are sometimes given in the hot, or inflammatory, stage of TED. Some docs prefer IV over oral.
There is a place for steroids, but they have side effects, and for short term use only.
I DID have oral steroids. They helped my double vision and excessive tearing immensely; it relieved pressure on my optic nerve, kept it safe until I had an OD. Steroids reduced the symptoms, but they comeback again when discontinued.
Having said that, I hate hate the way steroids made me feel, all jumpy, super hungry, with a big round face and some weight gain. ALL of this goes away, as the steroids are tapered, then stopped. They are a wonderful drug for certain situations, such as an acute asthsma attack, when someone cannot breath.

Choosing between ADT’s, surgery and RAI, is generally your decision. I do think if I already had TED, I would probably rule out RAI, but that is how I feel.
For me, surgery was definitive, I recovered fast.
For John-Since my incision was done over 30 years ago, it is a little longer than incisions of today. Regarding appearance, I cannot find it, and when I tried to show it to people at the recent Graves’ conference which I attended, nobody else could find it either. It’s my thought that you can not worry about that much. When you talk to a surgeon, perhaps they have some photos they can show you. Regarding parathyroids, there are four parathyroid glands on the thyroid. The incidence of damage to a parathyroid is rare. But we need only one of them to function perfectly normally.
The best guide for choosing a surgeon to talk to is to ask how many thyroidectomies they do a year. 50 is a good number.
Plus, asking any instance of complications have happened over their years of operating.

[snelsen]

#1063568

I forgot one word in my last post.
Under thyroidectomy, I intended to say, "you CAN have Graves’ and not have TED." I forgot the "can."
shirley

[mamabear]

#1063569

I am in a rush but wanted to comment ….

You were on Tapazole(Methimozole) and were good for a while. Got off of it and was fine for a good long time! Congrats to you on that!
You even had a serious surgery as well, sorry to hear that! But good that levels were ok.
So late 08′ to this summer of 10′ is about 1 1/2 years… That’s pretty darn good to be in remission without meds!

Did you have a cold in the winter or spring of this year? That might have triggered you go to out of remission.

I think that if you did Tapzole before and it worked out well for you, why not try it again? Of course do as previous posters suggested and take the bloodwork and make sure you’re levels are ok and Liver functions are ok as well. IT’s good to take blood work for liver,kidney and stuff like that before you start to get a base line.

If your dr. says no tell him you want to try, if he refuses then seek another dr. he can’t force you to do anything you dont want to do.

I’m in remission and was on PTU(I was trying for a baby and pregnant on and off from 02′-06′,so PTU was choice at the time)

If I go out of remission again I would gladly try Tap/PTU again. If I was unable to control the Graves on the ATD’s I would have opted for something else but I was lucky and I feel so were you so maybe it can happen again!

Good luck and keep us posted.

[jfouts1979]

#1063570

I think I am leaning toward Thyroidectomy. The Tapazole is interfering with the Neurontin I take for nerve pain. (a pain like a fire that does not consume flesh – is the best description I have read to describe this type of pain). I don’t know how long I can take the nerve pain – hopefully long enough to get my levels back in check. Thanks to everyone for their replies. The group has helped me a lot.

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