[James]

#1065628

Clearly there are various points of view on the three medically acceptable treatment options. Even amongst the facilitators on this board, we have all had varying experiences with the options we have chosen for ourselves. For some reason, some of us have problems with the antithyroid medication, but have given it a reasonable attempt. Fortunately it is not the majority of people on antithyroid medication that end up with serious problems; but if you are one of those people that have given it an honest attempt, it can be disappointing. I believe the thyroid is worth salvaging if at all possible for the same reasons that Kim pointed out. I choose antithyroid medication as my option against all the odds presented to me at the time (over 16 years ago now). Remission doesn’t necessarily come quickly or permanently, but the potential is definitely there. I’m fortunate enough to have experienced a very positive outcome, but it wasn’t something that happened quickly. Fortunately, the road for me on ATD’s was not a difficult one at all. You don’t know for sure until you have attempted a journey down that road.

James

[Bobbi]

#1065629

As I understood things, in this thread, a doctor was recommending RAI to his patient because of recent information about liver failure as a result of taking PTU. The patient in question cannot take methimazole. This was not a question of "which treatment option should I pick because all things are equal." Obviously, when all things are equal, and a doctor has given us a choice, there can be a range of decisions. But a doctor, in this case, has strongly recommended discontinuing the PTU. This is not a situation in which arguing the merits of ATDs makes much sense to me. I tried to word things originally in such a way to provide a different perspective for the person posting the issue, not to trigger an argument with those who chose — and are happy with — their ATD treatments.

[Kimberly]

#1065630

Sorry, my intent wasn’t to push one treatment option over the others, but rather to point out that I don’t think of myself as having a "diseased thyroid" — I think of myself as having a "defective immune system". My thyroid would be just fine if those darn thyroid stimulating antibodies would leave it the heck alone. ” title=”Very Happy” /> (Of course, patients who develop a serious goiter or who lose thyroid function after years of dealing with Graves’ have a defective immune system *and* thyroid).

Guidelines surrounding PTU would be an interesting subject for the next conference. The way that I read the FDA’s warning, doctors are being warned to not *initiate* PTU treatment for new patients, unless there are specific reasons that they cannot pursue methimazole, RAI or thyroidectomy. It doesn’t specifically recommend that PTU use be discontinued in existing patients. Of course, the liver issue is a real threat, so patients and doctors do need to give this serious consideration.

I would never *tell* anyone to use ATDs, in light of the potential liver and white blood cell complications. But I also know patients who have really struggled to find their "sweet spot" with replacement meds after RAI and thyroidectomy, so I wouldn’t tell anyone that’s the best choice, either. The "best choice" is the one that patient and doctor agree upon, with full knowledge of the risks and rewards.

[Bobbi]

#1065631

It’s an interesting issue. And I have thought about your point of view, and frequently. Try as I might, though, I cannot see any difference between our situation — a body part diseased by antibodies — and a situation in which a body part is diseased due to some antibiotic resistant bug. If you cannot get rid of the disease-causing agent, and the body is being sickened by the diseased part, you have to get rid of the diseased part , whether it is a gangrene-infested foot, or a septic appendix, or a thyroid. I think we are lucky. ATDs can provide a barrier to the disease making us ill providing we can tolerate them well. AND, we can live long and healthy lives without our thyroids. We very often have two reasonable choices.

[kristenb]

#1065632

Hi everyone thanks for all the replys!
I am not extremely hyper right now. Actually, I don’t think I am at all now. I get my bloodwork done monday. I feel even a little hypo.

My doctors gives me choices, he makes me feel crazy when I don’t agree with him. I often call my GP after my endo apts. She supports me 100%. I just want her to treat me!

I am at the point where I feel like I should just do RAI so I can stop thinking about what options I should choose.
My endo said 1 out of 100 get increased eye problems post RAI. I am getting married in 6 weeks, I just need my eyes to stay pretty for a little longer. Sorry if that sounds vain.

I saw a friend the other day who I hadn’t seen in a year and she flat out asked me if I had graves. I was like "is it that bad" She said she could tell because my eyes looked tired. I couldn’t even tell! But she was diagnosed 10 years ago, and has been through most of this. Her eyes were completely pertruded once! Oh and she said I looked thin! which made me smile because I have gained 15 lbs in past 3 months (but lost 10 with graves!) But you know how you feel after than.

[Ski]

#1065633

Truly, the most important element of your treatment is you feeling comfortable with it ~ the happiest patients are those who have made a fully informed decision. If you feel as if you are "settling," then maybe you need to think again. The actual statistics on people having increased eye symptoms after RAI are hotly debated at this point, but we do know that it’s possible. In one study, patients who took a concurrent course of steroids (a few weeks’ worth) had ZERO changes in their eye symptoms, so that’s something to consider, but of course you would have to weigh the potential side effects of steroids. (Nothing about this is easy, I’m sorry about that…) Given your current status (not hyper), you *may* have some more time to decide.

[snelsen]

#1065634

Your doctor was not lying. As the other posts say, when a person is on PTU you need to be monitered by labs.
I had PTU in 1957, had labs including hepatic panels.
I wish you the best in all the decisions you make.

[Kimberly]

#1065635

We had a seminar on Graves’ Disease in Phoenix yesterday, and the PTU issue came up. Our presenter re-iterated what we had heard at past conferences, which is that serious side effects *usually* occur within the first 90 days of starting on ATDs. (Keeping in mind that stopping and re-starting the meds "resets" the 90-day clock). Our presenter believed that if a patient had been on PTU long-term, was not experiencing side effects, and *chose* to continue with that course of treatment, that is an acceptable option.

[snelsen]

#1065636

That is interesting. I have two questions to ponder.
1. Is there a published study to reference regarding long term use of PTU? I would surmise that the frequency of liver involvement in the 1st 90 days might be skewed information, for using the drug usually has the goal of getting a person to a more steady state (ie, not toxic, TSH is suppressed) SO THAT RAI or TT can be the next step.
2. If #1 proves to be valid =lots more folks are on PTU short term than long term, the sample of the population for long term PTU use is very small (as opposed to short term) and unless it were a blinded study with labs done on both groups, the conclusion might not be very reliable. In the past, long term PTU has not been considered a treatment option, but a way to get to the next step.
If there are people on long term PTU, the long term needs to be defined (5 years, 10 years, more than that?)

Sorry, I am rambling, but I sure would like a reference for the information. Seems to me that long term, whatever it is, has not been around long enough to draw valid conclusions about its’ validity.

[Ski]

#1065637

The typical goal of anti-thyroid drugs as a treatment option is to take them for at least one year, more likely two, before attempting remission, so the 90-day figures are likely pretty solid in that population. Anyone using ATDs just to normalize levels prior to RAI or TT would probably not be on them for as long as 90 days, and they’d have to go off them again for some time prior to RAI at least, so their treatment would be extremely short and may not even have statistics for the most serious side effects, since they wouldn’t have taken it long enough to even reach a problem state.

[Kimberly]

#1065638

Just to add to what Ski said, when an adverse action with a drug is reported, the reporting form asks for the start and stop dates of when the patient was taking the drug. So I’m guessing that’s where the information came from on side effects usually occurring early in treatment. Interestingly, I’ve now heard two doctors from opposite sides of the country mention 90 days as the period in which side effects from ATDs are likely to occur. However, the new FDA warning uses a 6-month benchmark. I don’t know if there is conflicting info out there…or if the FDA is trying to err on the side of caution.

I have not seen any studies that specifically addressed long-term use of PTU. I know of one study that looked at methimazole use over a 10 year period and concluded that long-term use was safe. However, it was a fairly small study.

The FDA has tracked 32 serious cases of liver injury since they started tracking adverse reactions in the late 1960s. Out of this total, if you combine the adult and pediatric cases, there were 13 deaths and 11 liver transplants as a result of taking PTU. With methimazole, there were 5 cases over this same time period, 3 resulting in death. None of the methimazole cases were pediatric. So the risk is fairly small; however, as patients, we DO need to be aware of this risk and make our treatment decision accordlingly.

[Lis163]

#1065639

Hi,
I am a patient with Graves disease. I have had it for a period of nine years now and have been in and out of remission, usually for aprox two years at each time, except for the first time when I was first diagnosed and now.
In May of this year I have had a relapse but was told by a call out doctor who saw my rash to stop taking the medicine. Normally I have allergic to Neo-mercazole but not to PTU. I had blood tests done and they revealed low white blood count, I am cyclic neutropenic but each time that I have blood tests done my white blood count is still low.
Alarmingly, my liver test showed some slight liver abnormality. Both tests in June and in August after ceasation of PTU.
I saw an endocrinologist three weeks ago and regardless of my blood test results, i.e. low white blood count, scaring left over from rash (has not fully disappeared yet) and still some liver damage. Although he would not go into detail of those results. All he said was that we will most likely do RAI. I asked him if I have a choice in that matter. I realise that I should let go of my thyroid after fighting for it for nine years if it is not working correctly. But, would have to ask if there are other ways. I realise that there are surgical procedures to remove the thyroid and personally as scarey as it sounds, I may prefer that method to ingesting a radio active cocktail. Anyway, this is my history if anyone can relate to it or who wouldn’t mind giving some feedback.

I have a nuclear scan scheduled for tomorrow due to some slight swelling on one side of my thyroid which no doubt will give a better answer to which treatment I would best suite. However, I have until this date not tried a holistic path. Such as seeing a GP who deals with nutrition, herbs etc… I have heard that people with low boron can have hyperthyroidism. I must look into that.

There is a myriad of research out there but it all just makes me more frustrated and tired and non the wiser. If anyone has any ideas it would be much appreciated. In fact the more that I read the more frightened I become about ablation of the thyroid or thyroidectomies. (In particular myexedema coma after a thyroidectomy), unsure of correct spelling, or thyroid storm after RAI which I believe is a lot easier to get out of trouble compared to being severely hypothyroid.

As a final note, I am instructed by the endocrinologist to go home and take the PTU for six weeks and I have felt naseaus for the past three weeks of taking the PTU again. I worry about my liver. His theory would be to get me euthroid no doubt. Should I just go to my GP and request a liver test along with my white blood count??

Any ideas anybody, cheers, Lisa.

[Kimberly]

#1065640

Hi Lisa – I am guessing that you are outside the U.S., as you mentioned neo-mercazole. (Tapazole or Methimazole is commonly prescribed in the U.S.)

I would definitely notify a doctor about your nausea over the past 3 weeks, especially given your prior issues with liver complications. Some patients have elevated liver enzymes that tends to resolve itself after the thyroid levels return to normal. *However,* the FDA in the U.S. recently required warning labels to be placed on PTU due to potential liver complications, and nausea was one of the symptoms that should be reported to a doctor. Better to err on the side of caution!

If you are indeed having a reaction to the PTU, you will definitely want to consult a doctor regarding next steps. Most docs prefer to not initiate Radioactive Iodine treatment or thyroid surgery if the patient is severely hyperthyroid, as this can increase the risk of complications. However, while the worst of the liver complications with PTU are rare, they can potentially be very serious. So this is a difficult decision that will need to be made in conjunction with a doctor.

Unfortunately, there are no alternative therapies at this time that have been *proven* to control our hypERthyroidism. You will read cases on the Internet that certain individuals “cured” their Graves’ with some supplement or another. The problem is that in some individuals, Graves’ will go into remission on its own…so there is no way to *prove* that these therapies made any difference at all. And in the meantime, remaining in a hyperthyroid state can lead to bone/muscle wasting, heart issues, and thyroid storm. So the Foundation does not recommend abandoning conventional treatment in favor of an alternative therapy. However, we can certainly *help* our own healing process through things like stress reduction and proper nutrition.

As for making an ultimate treatment decision, I would encourage you to research the pros and cons of RAI and Surgery, and discuss this issue in detail with your doctor. Using the search function on this site is a great way to read personal accounts from patients who have chosen various options…but in the end, this is a decision that you and your doctor will need to make together.

Best of luck…please keep us posted on how you are doing!

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