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Not sure about the statistics you quote ~ you’d need to track that down by getting deeper information on that specific study to see what their population and timeframe was. There actually is relatively new information on PTU and liver failure, but the most dire news is for children, not adults. The new recommendation is NEVER to give PTU to children. Some doctors have extended that to adults because it’s such a dangerous complication. Liver damage is not reversible, but it can be minimized by stopping PTU once you see it’s happening. If you’ve been getting regular liver panels run while you’ve been taking PTU, hopefully you’d have seen evidence if the damage were occurring with you. Liver failure is permanent, and fatal without a transplant. Methimazole is still an option for you, if you want to stop taking PTU. You’d likely need to go through a short period of adjustment, since methimazole and PTU doses aren’t the same (PTU is taken throughout the day, methimazole just once), and they act slightly differently to achieve the same result, but just because you stop PTU doesn’t mean RAI is your only choice. You can take methimazole instead, or you can have surgery.
Ski I am allergic to methimazole. Could I try name brand?
The statistics are from the FDA site.
So does PTU cause liver damage or liver failure?
Tapazole is the brand name, but I don’t believe that would solve your problem, if you’re truly allergic. PTU can cause liver damage OR liver failure, that’s why the precautions are so severe.
So I went to my doctors today and he says " So we should take you off ptu because I got an email today about it causing liver failure"
I am thinking.. either your lying, or your not a good doctor because this info has been out for almost a year"
He is pushing pushing pushing to do RAI- which I am resistant to.
I researched the liver damage… but I have questions. It says 22 adults have had liver damage, and of the 22, 12 have died and 5 have had transplants. Is this 22 in a year? Ever?
And.. is liver damage reversable or perminant?
kristenb – The information about liver failure with PTU isn’t new; however, the FDA sent out a news release this week regarding new guidelines and labelling requirements, so that is probably what your doctor is referring to. The guidelines don’t specifically say that existing patients need to switch meds; however, it does recommend that doctors not *initiate* treatment with PTU unless there are extenuating circumstances (such as pregnancy). I’ve listed the patient info from the press release below.
Also, the statistics on deaths and transplants aren’t annual — they go back to when the FDA first started tracking adverse reactions, which I believe was in 1969. While severe liver damage or failure is a RARE side effect of PTU, the reason the warning was issued is that the incidents with PTU occured with significantly greater frequency than with methimazole.
Additional Information for Patients
* Be aware that severe liver injury has occurred in patients taking propylthiouracil.
* Read the Medication Guide when picking up a prescription for propylthiouracil. It will help you understand the potential risks and benefits of this medication.
* Contact your healthcare professional if you have fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of your skin or eyes while taking propylthiouracil.
* Propylthiouracil may be the treatment of choice during and just before the 1st trimester of pregnancy (weeks 1-12). Talk to your healthcare professional if you are pregnant (or plan to become pregnant) and are taking a medication to treat hyperthyroidism.
* Tell your healthcare professional about any medication you are taking or medical conditions you may have before taking propylthiouracil.
* Do not stop taking propylthiouracil unless told to do so by your healthcare professional.many have taken ptu and have been fine… although I do understand the worry, as with any drug you have to be cautious either way. Taking a base line liver function and repeating it to keep track should help.
Facilitator’s if I’m wrong please let me know!Regarding your dr… Personally I am NOT of the liking of any dr telling me what to do with my body. I do my research and take what they say into account and when they push something I don’t like that.
I have told a dr. this before " so you are pushing RAI because you want me to be on Thyroid replacement and rely on you the rest of my life, no thanks!". "we do it my way or no way or not with you at all". Big smile on my face too! I left that dr. because he insisted on rai and i told him to well…. lets just not say that on here but believe me I said it! LOL
Sometimes RAI is the way to go and it works and you go on supplement and are fine after they get the dose right. I didn’t like this persons attitude about pushing it so I left him. I would either tell this dr. to stop talking about and stop the bs adn you will try PTU or you will go to someone else who gives a damn about how you feel.
Good luck !
I think it reasonable to listen to the endocrinologist. And have him listen to you. We don’t know from your posts if you re extremely hyper right now, or much else about your labs or how you feel, before you go shopping for another endorinologist. If, in fact, he is pushing, pushing, pushing you to do RAI, might make sense to have an appt. to ask him his reasons and his concerns about your thyroid status. Have a conversation. I can’t see any particular reason for him to push you so hard without providing some reasons. Have you already decided not to have the surgery, and is it your own decision to try to take anti-thyroid drugs the rest of your life? Just not sure where you are with this. I am not that familiar with RAI, for this reason, I am not sure that an individual needs/has to be on thyroid the rest of his/her life. I presume they calculate a dose, and there are varying outcomes, if the goal is to completely obliterate they thyroid, I am not aware of that.
However, I am very familiar with my own experience with a sub total thyroidectomy. Initially, I was very toxic, very hyperthyroid. When I was extremely hyper, I was pretty darn hard to live with, work with, or reason with. Being hyper kinda does that to you. I took PTU, had regular liver labs. Then the PTU was withdrawn, and I reverted to being extremely hyper again. Tried this twice. I opted for the surgery, had a bit of thyroid left, and was euthyroid (totally normal labs, and felt super good) for almost 40 years. Then I became just a bit hypo, went on a small dose of Synthroid. Levothyroxin is about as harmless in terms of side effects, than a drug can get.RAI and thyroidectomy, these days, aim for total ablation of the gland, which of course would be followed by thyroid hormone replacement for the rest of your life. The reason is that experience has shown that ANY remaining thyroid tissue has the potential to overproduce as a response to antibody activity, so you may have periods of thyroid hormone spikes, and those are dangerous too.
Thyroid hormone replacement does not require constant monitoring by an endocrinologist ~ your general practitioner can manage that after you’ve arrived at a stable level, if you prefer. Typically it’s much easier that way, since you see your GP often, and endocrinologists are so busy. In addition to that, once you’ve arrived at a good dose for you, you really only need to check levels annually, or if you suspect a problem.
It’s true that thyroid hormone replacement is less toxic than ATDs, simply because it is, chemically, the thyroid hormone our body would produce if it could, so it doesn’t rate as a "medication" or introduce toxins the same way the ATD does. HOWEVER, a very small dose of ATD, which is typically what you end up on as a maintenance dose, also carries extremely small risk.
I know, not much help.
” title=”Very Happy” /> This is why it’s such a tough decision for all of us!Ski, thank you for telling me the standard of care for the present time regarding ablating the thyroid either by RAI or surgery. That is very interesting to me. And it prompts me to wonder if the incidence of TED is higher in "those of us" who did have the procedures, when the former thinking was to leave a little bit! Have you learned anything about this subject?
The incidence of TED seems to be almost completely unrelated to the course of our thyroid disease or which treatment we choose, according to what we’ve learned at our conferences ~ it can even begin more than ten years after we’re successfully treated and regulated for our thyroid disease, though that’s rare. I’m sure you’ve heard of the one study that came out with a 16% incidence of "temporary worsening" of TED symptoms in patients in the first few months after RAI ~ we heard at the most recent conference that this study has not been replicated, so we’re not exactly sure of the incidence rate overall, but it’s still something to consider. These results in no way suggest that RAI either causes or permanently worsens TED symptoms. Theories are that the worsening is in some way related to a certain level of antibody action, or to a dramatic drop in hormone levels, but nothing’s been conclusively proven on that score. The only reason we worry about this particular element of what we know is because, if a patient already has extremely severe TED symptoms, they probably wouldn’t want to risk even a small chance of temporary worsening, so they may not want to choose RAI to treat their thyroid disease (or they can take steroids for a few weeks on either side of the treatment, which dropped the levels of worsening to zero in that study). Other than that, the two conditions appear to be related in that they occur together in patients, but they have completely unrelated disease paths, in that you can’t predict what will happen with one condition by virtue of knowing what’s happened with the other.
Just another bit of information to add to what SKi has pointed out. When I was diagnosed with the eye disease it was called GRAVES associated opthamopathy (or whatever unspellable medical term it was). During the course of my eye disease doctors and researchers changed the name of the disease to THYROID associated opthamopathy, or thyroid eye disease. I asked my oculoplastic surgeon about this, and was told it was because the medical community was finding the eye disease in other patients who had never been hyperthyroid (i.e. had Graves) but had some type of thyroid disorder. That being the case, while a treatment might aggravate the symptoms of the eye disease temporarily, obviously it cannot be the "cause."
And, throwing in another comment on PTU and liver failure issues. The reason I chose to have my thyroid removed was because I realized that by any definition of the term, my thyroid was permanently diseased. It made little sense to me to risk my healthy liver to "save" a permanently diseased organ. I offer this as another perspective.
I was diagnosed with Graves in September. I wanted to try anti-thyroid drugs first to see if maybe by some small chance I could achieve remission. I started with tapazole and I had a terrible itching reaction. I was scratching my legs bloody and couldn’t sleep. My endo switched me to ptu which I was on for a few months. He was cautious at monitoring my levels and liver enzymes. I had to stop taking the PTU because my liver enzymes were dangerously low. He said it was just too dangerous to stay on the drug. The bummer thing is that it was working and my tsh and t4 levels were coming into the normal range. Now, I’m on to plan B. My plan B is RAI. I’m taking the pill on Wednesday. Any advice out there on this? My endo described this disease as a nuisance disease and I agree. I’m thankful that it is something that is treatable! I’m hoping after RAI and then most likely going on synthroid or something similar, that my levels will be okay and I will feel better. My pain problem is the irritability and hand tremors! I’m hoping I’m not so crabby and will have more patience with my family!
You’re not alone there ~ my anger and tremors were the least favorite symptoms. By the time things got really bad, my handwriting changed. That was scary. The anger is really tough, while there’s still a chemical imbalance, but do what you can to bring everyone around you the knowledge of what’s going on with you. You don’t have to give them chapter and verse, but you can tell them you have a thyroid imbalance that shortens your temper considerably, and you "apologize in advance" if it happens with them. It can help. Jake used to do something I adore ~ when he was "going off" with anger, he’d start to yell "I love you! I don’t want to do this! I don’t know how to stop!" It can diffuse the tension a LOT, and especially so when they are already informed.
Once your levels start to normalize, that stuff will begin to ease, and relatively quickly. Still, it won’t get back to "normal" as soon as you want, but try to celebrate small improvements.
The trick with RAI is to make sure you are aiming for ablation (destruction), and start looking at your symptoms for signs of hypothyroidism starting around the six week mark. It can take that long to flush out the excess thyroid hormone that was in your bloodstream before you take the RAI, so you wait until at least that period has passed, then pay close attention to your symptoms. You can keep a list of classic hypothyroid symptoms, and hopefully have access to a lab when you see that you’re experiencing more than 4 or 5 of them on a regular basis. It’s good to have a standing order at the lab for blood tests, but make sure you don’t abuse the privilege, because even though it’s a relatively inexpensive blood test, it adds up. Once you’ve officially gone hypo, you’ll start taking replacement hormone ~ which, again, takes about six weeks to fully build up in your system so that you can get accurate lab results when you have your blood tested. Again, keeping a symptom diary will be extremely helpful as you go through this process with your doctor. They LOVE data, and if they see empirical data, taken down as things happened, that point to one thing or another (either you’re getting too much or too little replacement hormone), then they’ll work with you to adjust your dose to find the exact right dose for you. It is NOT one-size-fits-all by any means. They can’t look at your height and weight and figure out exactly what thyroid hormone replacement dose will be perfect for you. In addition to that, at the beginning, you may be having more failure of the thyroid even as you begin to take replacement, so things can be tough to estimate.
At first, you probably won’t feel a whole lot different, but know that things are slowing down, at least. I wish you luck!
Bobbi wrote:And, throwing in another comment on PTU and liver failure issues. The reason I chose to have my thyroid removed was because I realized that by any definition of the term, my thyroid was permanently diseased. It made little sense to me to risk my healthy liver to "save" a permanently diseased organ. I offer this as another perspective.Just had to throw in my 2 cents on this issue, as everyone has a bit different perspective. My line of thinking in choosing ATDs as a treatment option was that it was my immune system, not my thyroid, that was defective — and that I had the best shot at addressing the immune system while preserving my thyroid with ATDs. One study that was discussed at last year’s conference showed that there is a period after RAI where the antibody activity actually increases, and then the antibodies remain somewhat elevated (although lower than before treatment) for up to 5 years.
Obviously, all the treatment options have pros and cons, so this is a decision that should be made after consulting one’s doctor and doing as much personal research as possible.
It’s so individual ~ one of the best presentations we had last October laid out all three of our options, and reasons why a person would choose one over another. Part of it has to do with medical conditions (allergies to the ATDs, for instance, or severity of symptoms), and part of it is emotional ~ as we’ve mentioned before, we’re so fortunate to HAVE options. Not everyone does.
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