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in reply to: graves and other organs affected #1074269
Buttamama, it’s really good that you quit smoking, as that (along with normalizing thyroid levels) has been shown to reduce the risk of severe thyroid eye disease, as well as the other well-known health effects. As for any effects hyperthyroidism has on the heart, it takes time to heal from these, and thyroid hormone levels need to be stable before healing can begin. In the meantime your Propranolol will help protect your heart, so you’re wise to take it faithfully as you do.
in reply to: 2009 Conference? #1074226The last I heard a Conference is being planned for 2009 somewhere towards the east coast, but haven’t heard anything definite yet. It’s in the early stages and many ideas were being discussed the last I knew. I’m sure in a few months there will be something more definite so that people can plan ahead.
I’ve been to many conferences, and I don’t miss them when I can help it! The support factor alone is worth more than you can possibly imagine!
I went to my first conference in 1997 and met a lot of the people I’d been corresponding with here on this bulletin board for the previous year or more. After talking to everyone every day on the board, actually meeting them felt very natural, and it felt so great to see other people with the funny eyes. (Actually, there’s nothing funny about it, but you know what I mean!) It gave me hope to see Nancy Patterson after her surgeries and give me hope that I wouldn’t always look the way I did then (and I don’t now)!
But even if you don’t have the eye disease, meeting others who are going through so many of the same emotional issues is priceless, and there are family groups too. Believe it or not, they benefit from talking with each other about what they go through in dealing with US, and sometimes too they come away from the conference with a better understanding of what we go through, especially after attending some of the physician sessions.
I hope you’ll join us this year, and bring your family.
Does anyone else who has been to conferences have something to say?
in reply to: At my wits end #1074243Judy, as I understand it, in Diane’s case she first had her thyroid removed surgically. However, it’s not possible to remove ALL thyroid tissue, and sometimes the thyroid can grow back when it’s been surgically removed. It doesn’t grow completely back, but just enough so that under extreme antibody attack the tissue that does grow back can make the person hyperthyroid again. When this happens, the patient has to have another treatment.
When Diane’s thyroid grew back she had RAI, but apparently she didn’t have a large enough dose to stop her hyperthyroidism. Her case is very unusual. She has a VERY stubborn thyroid that doesn’t want to be destroyed!
When a person has RAI the thyroid doesn’t grow back, because the thyroid cells that aren’t destroyed outright by the RAI are damaged, and even though they may be capable of putting out some thyroid hormone, they aren’t likely to be so healthy that they will increase in number and then make the patient hyperthyroid again, In fact, the opposite is the case. Over time, they usually decline in function. As years go by, RAI patients usually need higher doses of thyroid replacement hormone (at least until the thyroid has failed all it’s going to).
If your RAI treatment was successful and it’s been some time since your treatment, you don’t have to worry about becoming hyperthyroid again except by taking too much replacement hormone. There are a few RAI patients who become hypothyroid temporarily early on, and then find it was just a "stunning" effect and they become hyperthyroid again, but once you’ve been hypothyroid and on replacement hormone for awhile, this won’t happen.
As for having dead thyroids living in our body: There won’t be. Any tissue that is damaged enough to die will shrink up and be eliminated by the body’s waste system, so it won’t be hanging around. Is that process healthy for us? That’s a good question for your doctor. There are certainly effects on our antibody levels. One of the reasons our thyroid stimulating antibody levels rise following RAI is that our immune systems react to the damaged tissue. Most of the tissue damage occurs in the early months following RAI, and the rise in antibody levels that is seen in RAI patients corresponds to that time. However, the antibody levels are still slightly higher even five years following RAI, while with antithyroid drug treatment and surgery the antibody levels tend to normalize. (Thyroid tissue is still declining in function for many RAI patients during that time.)
As long as thyroid levels are under control, does it have health consequences to have a rise in your thyroid stimulating antibodies? This question hasn’t yet been answered to my satisfaction, considering that higher levels of some kinds of thyroid antibodies are associated with a higher likelihood of having Thyroid Eye Disease. There is still a lot not known about the cause of TED, or about other extra-thyroidal manifestations of Graves’ Disease. These are all questions to discuss with your doctor, but many of these questions don’t have definitive answers, no matter whom you talk to.
Back to Diane’s thyroid: Even though she’s still hyperthyroid following her RAI, it’s likely that some damage was done, and that if she waited long enough she would eventually become hypothyroid. It’s simply impossible for radiologists or endocrinologists to predict how any particular thyroid gland will react to any set dose of RAI, and perhaps in her case, her doctors underestimated how much it would take for her, since she didn’t have a complete thyroid to start with. It’s also possible they gave her a good-sized dose and her thyroid tissue is just VERY resistant to treatment.
Diane, what did your doctors say about what happened? I’m curious! How long ago was it, and do you have any idea what they’ll recommend next?
in reply to: My Story- Babies and PTU #1074222What a rough time you’ve had, and I too am so sorry about your babies! All this and no insurance, and you’re so young! How are your eyes, are they affected too?
Is cost the reason you haven’t had a second RAI?
Best wishes,
in reply to: At my wits end #1074241Hi Diane,
I’ve been wondering how you’re doing! I can’t believe that thyroid of yours is still hanging in there! It’s like the cat with nine lives, only more so! Now, let’s just hope your heart is as tough as your thyroid is.
I can’t even imagine how frustrated you must be, but I admire you for your strength in the face of all this. For those who don’t know, Diane has a really bad case of Graves’ Ophthalmopathy as well as a crazy thyroid that won’t die, and the eye disease is as persistent as her thyroid disease. It’s difficult to take care of the eyes without being able to stabilize her thyroid, so she’s been living for a long time with some very difficult problems.
Diane, I sure wish I had that magic wand. If so, I’d sure use it on YOU.
Sending love and warm wishes your way, and when you get through this AND YOU WILL, you can tell the rest of us how you coped so well. You ARE coping amazingly well!
Dianne
in reply to: blepharotomy #1074276Kathy, I’d like to add that I’d be happy to talk about any of the surgeries specifically and what they’re like, or any other concerns you might have. I also forgot to mention that with upper eyelid retraction there’s a chance it will improve in time without treatment, and that if you have the blepharotomy you will end up with droopy eyelids down the road and need to have them raised. This happened to me. I’m telling you this because it’s apparently common enough that you might want to discuss this with your doctor and make it a factor in whether to have the surgery, or wait to see if it improves on its own. (For me, I was glad to have the surgery, and correcting the droopy lids isn’t a big deal.)
in reply to: blepharotomy #1074275Dear Kathy,
I can definitely relate, as I’ve had severe corneal erosions that have resulted in an inability to spend time outdoors unless I’m wearing goggles of some kind, and I can’t have any moving air on my eyes, such as fans, air conditioning, etc. I’ve had 8 surgeries on my eyes so far, including orbital decompression and lid retraction surgery.
As Nancy told you, it’s vital that you see a ophthalmic plastic and reconstructive surgeon who does orbital and eyelid surgery on Graves’ Disease patients as a major part of his or her practice. There are too many factors in making any changes in the eyelids that can make the problems worse instead of better, even in the hands of the most experienced surgeons (which is part of the reason I’m still having problems).
There is no guarantee even with surgery that your problems will be entirely eliminated, but surgery may be the best chance of helping you. In the meantime, I’ve found something that was recommended for me by an ophthalmologist who specializes in treating dry eyes from Mayo Clinic. It’s called TranquilEyes, and it’s a goggle-type sleep mask with washable eye pads that keep your eyes closed at night. It’s very comfortable to sleep with and easy to care for; and SO much easier than taping the eyes closed at night.
If anyone is interested, just Google it. I purchased mine from the Dry Eye Zone. You can try other places, of course.
There is also a specific kind of eye-wear that is kind of like a motorcycle goggle, made for dry eye patients. Prescriptions lenses can be put into these; and washable, vented pads help keep the air out. They allow me to go outdoors for a short while if there’s a slight breeze, but not if there’s a strong wind. If anyone is interested in the brand name and where to purchase these, send me an email.
I definitely think it was worth it to me to have surgical correction, but caution you to get opinions on your case from the best doctors possible, even if you have to travel to a city with a teaching hospital. We were fortunate to have family in Los Angeles so that I could stay with them during my reconstructions. If you have friends or family anywhere, that might affect your choice of where to start looking for doctors. There was a doctor in my area who could have done the surgery, but I felt more comfortable in the hands of doctors who had much more experience.
http://www.asoprs.org/custom/directory/ … howTitle=1 This link takes you to the web page of the American Society of Ophthalmic Plastic and Reconstructive Surgeons, where you can do a search for a physician in any state. Members of this society have all trained to do the specialized surgeries on Graves’ Disease patients.
in reply to: New and worried #1074318Rob, what a great post, and also you understand the difficulties I mentioned with the fine line between letting employers (and in your case, clients) know about the illness while not causing them to lose faith in your ability to do the job. In other words, whatever information we share with others in reference to the job has to be in our best interests. Perhaps we could have a couple of different versions of the brochure to use in different situations. You write well; perhaps you’d be willing to help with this?
An endocrinologist at one of the NGDF Conferences said she recommended antithyroid drug treatment to most of her patients to begin with for the very reason that it gives patients a chance to make any further treatment choices while thyroid levels are normal and they are in a better place both mentally and emotionally to be making important decisions. Then if the treatment goes well and remission is achieved, that’s ideal.
Some endocrinologists believe that RAI is the treatment with the fewest serious risks, and that since only about 20-30% of patients will have a permanent remission after ATD therapy and of those, many become hypothyroid eventually anyway, they recommend RAI to most of their patients at the outset, sometimes without even mentioning other options.
I agree with Ski that it should be the patient’s choice, not the doctor’s. There are many factors that go in to this decision besides the doctor’s assessment of the outcome for his entire patient group. Each patient has a unique lifestyle, preferences, and even prejudices that enter into decisions and should be respected. Since each treatment choice has both advantages and disadvantages, deciding which of the disadvantages is most distasteful has to be a personal decision. I also presume that patients who feel they chose among all the options will ultimately be more content with their role in the process. I know I’d be very upset if I hadn’t been given a choice, but I know it happens even with doctors who have the patient’s best interest at heart.
Certainly as Ski said, ATD treatment allows you time to gather information, and more is better. Another advantage is that researchers are working on treatments that may eventually treat the cause of the autoimmunity and not need to destroy the thyroid in the treatment process. Only those who still have a thyroid will benefit when that day comes.
Good luck with your treatment if that’s what you decide to do!
in reply to: New and worried #1074316This thread seems to be getting lots of response, and I’d like to hear from even more people on this.
My diagnosis was nearly 13 years ago and I’m retired now, on disability related to Thyroid Eye Disease, so my supervisor and co-workers eventually did understand that my problems were more serious than they believed. I had seven reconstructive eye surgeries, including orbital decompression, while still working (have had two more since, and have at least three ahead). However, two more women at the same place of employment were subsequently diagnosed with Graves’ Disease a couple of years before I left, and treated with antithyroid drugs. They complained of being treated by the same supervisor as if they were making a big deal out of nothing, partly because they had fewer complications than mine.
For a long time I’ve wanted to find a way for the Graves’ Disease Foundation to help patients educate employers in this area, but the danger is that we could hurt more than help, if we lead employers to think people with Graves’ Disease aren’t capable of doing their jobs when they need those jobs to support their families. Many people with GD cope quite well during the months where treatment takes place and really don’t need much in the way of accommodation from the employer. This is a highly individual matter. Does anyone have ideas on how we could do this? I’m referring to developing resources that would really help patients give information to employers without causing unintended backlash.
Perhaps we could also work on developing a brochure for families of the newly diagnosed; something that we keep on this bulletin board or the NGDF web page as a resource and people can print out themselves as the need arises. I’ll talk to Dr. Nancy Patterson to see what she thinks of this idea. An excellent bulletin written by the husband of a Graves’ Disease patient is available among the present group of bulletins, but I’m not sure what the availability is of those now.
Depending on treatment choice and how each patient responds to treatment, there might be a period of time when time off work for treatment or time off because the patient is physically and/or emotionally too unwell to cope with everyday job demands is necessary, and when it is necessary, it’s entirely reasonable and necessary that the patient receive support and validation from the physician in making it possible. A good doctor will also give families this information, so that the patient has validation and support at home.
How is this going for everyone else? Are your families and employers being as supportive as you’d like? If not, what have you done about it, and has it worked?
in reply to: What took me so long? #1074504Wow, it must be frustrating to get such different advice. And yes, RAI is certainly worth serious consideration as a treatment choice if you haven’t given it serious thought up to this point. If you still think surgery is an option you would want to talk to a surgeon who is fully on board with the idea and who actually does perform this surgery routinely (and often) exactly for the problems you are having. At this point though, a good, serious talk with your endo and/or a second opinion are certainly in order if you still have lingering doubts on the best way to proceed, given the hot nodule and chances of future problems. Yours isn’t the standard Graves’ Disease case.
Best wishes,
in reply to: New to this Topic Board~! #1074308Melissa, when people have difficulty following RAI it generally has to do with difficulty stabilizing thyroid levels, and there are a number of reasons that can happen. Also, sometimes following RAI a person can temporarily become even more hyperthyroid because the damaged thyroid gland "dumps" stored thyroid hormone. Usually when that happens it’s only for a couple of weeks, give or take.
It’s also not possible for our doctors to determine ahead of time how a particular thyroid gland will respond to a given dose of radioactive iodine, so in spite of best efforts, a certain percentage of the time the given dose will fail to correct the hyperthyroidism and it will be necessary to give a second dose. Rarely even a third dose is necessary. This can be frustrating for the patient, needless to say.
That said, it can take anywhere from approximately a month, to six months or more (if you have multiple treatments) to control hyperthyroidism, with the usual time being around 2-3 months. Once hypothyroidism is achieved, thyroid replacement hormone should be initiated. At that point many patients begin to feel better in a week or so; however, the amount of damage the thyroid has sustained and its need for hormone doesn’t always stabilize right away, so in some cases the thyroid may decline in function further quite rapidly in that first year or so, making it difficult to adjust to the right amount of replacement hormone. The amount of time this takes varies for each person, and depends on factors only some of which are in the doctor’s control. When the levels don’t change much, the patient has a relatively easy time. When the levels keep changing, the patient can be uncomfortable.
Once thyroid levels are stabilized it can still take time to recover from the time spent with abnormal thyroid levels, but most people begin the journey of feeling well again.
A lot depends on having a doctor who is diligent about managing thyroid levels, and as a patient you can help yourself by being proactive and knowing that you don’t necessarily have to wait until a scheduled appointment time to have thyroid levels checked whenever you think that there has been a shift in your thyroid status. This is not to say that there are times when we really need to be patient and wait the full six weeks (or however long your doctor recommends) between tests to give a change in replacement dose a chance to work. But when there’s a drastic shift in status, such as when we in all likelihood have become hypothyroid after RAI, we shouldn’t have to wait until the next scheduled appointment for a blood test. I’ve never been refused when I simply walked in to the doctor’s office and told them I felt unwell and wanted a test done.
Once you get beyond the phase of adjusting thyroid hormone, all you have to do is remember to take your replacement hormone faithfully. The hardest thing for me at first was remembering whether or not I had taken it, so I had to get a pill box, and I could tell by whether or not it was gone from the box. Otherwise I remembered that I walked into the bathroom to take it, but did I or didn’t I?
I wish you the best with your treatment.
in reply to: What am I in for? #1074335The majority of people don’t ever take any time off work following RAI. I had to take time off work, and so do many others, but that’s not the most common occurrence.
When you read about experiences like mine, keep them in mind as one end of the spectrum of possibilities, but that isn’t to say it’s the expected outcome. I was (and still am) upset that my doctor didn’t let me know it could take a year to regain normal thyroid levels following RAI. When I tell people about that, I don’t mean to say that everyone will take that long. A significant number of people do go through a long period of adjusting thyroid levels following RAI, while others seem to breeze through. it depends on how difficult and stressful or physical each person’s job is whether job duties can be continued throughout that process, but I think most people are able to work.
Talk to your doctor about how s/he plans to manage your RAI to minimize the period of changing thyroid levels. There are ways to do this that make it easier on the patient. One way is to give a larger dose of RAI to cause hypothyroidism faster, though it’s impossible to completely predict for any individual patient just how fast or how completely the RAI will work. (Doctors have been trying for years.) Faster control of hyperthyroidism and more complete destruction of the thyroid generally means less fluctuation in thyroid levels, and faster stabilization on thyroid replacement hormone. Patients who fall in this category can have a really good experience with RAI, with little discomfort and probably no time off work, if all goes well.
If a dose of RAI is given that’s too small, the patient will still be hyperthyroid 3-6 months later and need to have another treatment. That doesn’t necessarily mean time off work, but it can be frustrating and prolong the time of being unwell.
Some of the patients who can take awhile to stabilize are often those given the lower doses meant to achieve a "euthyroid" state. Many doctors have given up that idea now since they’ve discovered that even when they’re successful (which isn’t often) nearly all patients who have RAI are hypothyroid in 10 years anyway. One of the reasons I had fluctuating levels for so long was that I had a relatively low dose and my levels dropped constantly for 4-5 years, so it took that long to become totally stable. I’d have been better off to have a larger dose that destroyed the thyroid initially.
So talk with your doctor about all these issues and about how long s/he expects it to take for you to be feeling well again. I think you have every reason to feel optimistic that you’ll be better soon!
Best wishes,
in reply to: Tapazole and muscle weakness #1074327Try asking your pharmacist if muscle weakness is one of the important listed side effects of Tapazole. I could look in my Physician’s Desk Reference, but your pharmacist could talk to you about the relevance of the information listed about muscle weakness if indeed it is listed as a side effect. (Most drugs have just about every possible symptom listed somewhere as a side effect, but not all are clinically relevant.)
That’s probably a question your doctor could have answered too if he’d taken the time, but sometimes pharmacists are more motivated to answer questions about drugs than our doctors are.
in reply to: New to this Topic Board~! #1074306Hi Melissa,
Eight years is a long time to have Graves’ Disease for someone who is only twenty! Yes, you’re definitely on the lower end, though we know others as young as you are. What treatments have you had so far?
You sound like your attitude about this is wonderful. If you have questions about the RAI there are many of us here who have done it.
Best wishes
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