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in reply to: Grave’s Disease with possible pituitary problems #1074069
Rochelle, you sound like an intelligent lady and I think you probably could come close to your diagnosis a lot of the time; but as you said, drive yourself mad in the process. That’s a really good plan to expedite your MRI, and I think it’s fortunate that you remembered your medical history so that if it should factor into the equation, it won’t be missed, which with as many complications as are going on with you, could be a mess. Do let us know what you find out!
in reply to: New here, have lots of questions #1074141Crista, you sound like someone with a positive attitude, and I hope you will be in contact with your doctor today and feeling better very soon. Best wishes,
What does your doctor say about being on meds (besides propranolol)? If you are hyperthyroid, then that alone won’t normalize your thyroid levels and control your symptoms. It’s bad for the eyes to remain hyperthyroid, if indeed you are.
If your doctor prescribed you another med such as methimazole or PTU, then you should take it. No one likes to take meds, but this would definitely be a case of "need to".
I suggest you have another talk with your doctor to make certain you understand exactly what your thyroid is doing. Is the portion of your thyroid that wasn’t removed producing too much hormone and making you hyperthyroid? If so, how does the doctor intend to bring your levels back to normal? Does he plan to give you a choice?
It’s a good idea to ask for copies of your lab tests and learn to understand what the thyroid function tests mean. The more you understand, the more you can participate in your own decision-making, and the easier it is to help your doctor give you good care. The tests have normal ranges for the lab your test was performed in printed next to your actual test result so that you can tell if your result was normal or not.
If you want a basic understanding of the symptoms of Graves’ Disease and how to understand thyroid function tests, you can find a list of books on the GDF recommended reading list at http://www.ngdf.org
It’s a good idea to see an ophthalmologist for a baseline examination of your eyes. Ask if he treats many patients with Graves’ Disease, since if this isn’t something he does regularly, the exam may be of limited benefit. Many patients with Graves’ have been given a negative diagnosis by inexperienced ophthalmologists, who may not be familiar with subtle changes of the milder cases.
Best wishes,
in reply to: TED symptoms and temperature #1074085Rob, I see you didn’t get a response from anyone. I am curious what reply you got from your endo on this? I know that there are definitely changes in the degree of my proptosis (even following decompression), but haven’t figured out a particular pattern.
in reply to: My flue and hyperthyroidism #1074160Grekson, what you need to do is take your methimazole and let your doctor know what’s going on. If you’re caring for yourself you won’t mess with OTC meds without talking to your doctor first.
I’m sorry you have the flu, as I know how miserable that is. Do you have someone to help you out? Sometimes some chicken soup and TLC is worth a lot more than the kinds of things you’re talking about. I’m sending you some over cyberspace.
It’s really not good to still have a fever after four days, and you should check with your doctor in case it’s not just the flu. I’m serious, and if you were my son I’d be stern about this! The next post you make I want to hear what the doctor said!
Take good care,
in reply to: New here, have lots of questions #1074139I have a couple of comments here. Crista, you keep talking about trouble sleeping and the stress you are experiencing. In your mind, these problems are coming from your worries about gaining weight and from taking the meds. What I see is that these are symptoms of untreated hyperthyroidism. They will go away in time once your levels are normalized.
What we like to do when we’re having these symptoms is to find something to blame these symptoms on, so of course the fact that you really are worried about weight gain is an easy focus for you. Still, keep in mind that this disease is probably causing you to worry about it more than you would if you were not hyperthyroid.
As Ski said, there is NO ONE who isn’t concerned with putting on excess weight. Still, we do have to treat this disease. Regardless of whether the disease causes some weight gain, the end result is that weight gain is caused by taking in more calories than are burned up. It is always possible to lose weight.
I won’t tell you that there won’t be more weight gain than you might wish for in the days immediately surrounding your treatment. Some of it is healthy weight gain, with muscle that was lost being replaced. Some of it might be temporary fluid retention, as thyroid levels are out of whack at times. At one point following my RAI I was 40 pounds higher than my pre-Graves’ weight (the fault of a doctor who failed to properly adjust my levels, and shouldn’t happen to most people). But now 13 years following my RAI I weigh the same as I did before Graves’ Disease, and though I’m not saying it’s always been easy, what woman in America has an easy time maintaining her weight? Probably for the most part only the ones who are still hyper! Remaining hyper and staying alive and healthy are simply not compatible.
Crista, if you are having hives in response to the methimazole, you can try PTU or you have the options of surgery or radioactive iodine. You will not bring your thyroid levels into normal ranges any other way. Your trouble sleeping and your worries won’t stop until you treat this disease. It takes time to bring the thyroid levels down, and then you’ll be in a better place emotionally to make other decisions.
James and Ski both had some very good comments about treatment that I hope you took seriously.
Noelle, if your doctor adjusts your meds right, you won’t be either hypo or hyper. Then your metabolism will be normal, and your appetite and energy levels should eventually go back to what they were before you had Graves’ Disease. That might take some time. The weight you gained won’t automatically disappear. You probably will have to increase your exercise and decrease your food intake to make that happen. It’s not so difficult if you keep in mind that you can lose ten pounds in a year simply by cutting out 150 calories a day, which is the equivalent of a can of soda. If you cut that much out and burn up that many calories through exercise, you can lose 20 pounds in a year. These are very small changes, but they make a huge difference over time. Consistency is what counts.
Best wishes,
in reply to: Grave’s Disease with possible pituitary problems #1074067Hi, and welcome!
I’m so sorry for your many losses, and understand your fears. While I think most of your questions will need to be answered by a doctor, I understand your desire to find someone else who has been through something similar. I think the first step though will be to get that MRI and find out whether or not you actually have a pituitary tumor. Until then, if possible try not to worry too much. I’ve found that dealing with the problems that I know I have today are generally enough, and I will deal with any new problems when I’m sure I have them.
That said, I can understand your fears, and if it helps at all, my niece had a pituitary tumor that was operated on endoscopically in Los Angeles last year. The surgery wasn’t bad for her, and she recovered quickly. She stays on a med to keep the tumor from growing back, since it couldn’t be completely removed. Otherwise, her health is good. The program she was in was one of the best in the country, and if you should receive a diagnosis of a tumor, and want a referral to that program, I’d be happy to contact my niece on your behalf and find out the specifics. I’m sure she’d be willing to correspond with you directly as well. She doesn’t have thyroid problems though.
Best wishes,
in reply to: Is GD considered "life threatening"? #1074101It certainly would be nice if he could have something special in the way of a special treat to help him through this illness, even though he’s not in the same category as kids with cancer. I think in many ways, because of the assault GD makes on the emotions, living with Graves’ Disease can be just as rough as living with a really life-threatening illness. Part of the reason is that we don’t look especially sick and yet everything about us, both physically and emotionally, is completely out of whack, and there’s no telling when it might get better. It can feel like forever!
Too bad there isn’t something for kids with chronic illness, rather than just for kids who are probably going to die. I suspect that he may not qualify for Make-a-Wish, but I think that he and many other ill children would benefit from having a resource like that.
This has to be so hard for you as his mom.
in reply to: Support Group Leadership Training Feb 26-28 #1074119Elaine, I’ll answer for Nancy in case she doesn’t see it very soon. Book your flight to Asheville, NC. It’s a nice little airport. I was there last year. Someone can pick you up and take you to the hotel, just talk to Nancy about what time your flight is coming in when you get it booked.
Glad to see you on the board!
Dianne
in reply to: blepharotomy #1074286A blepharotomy is not the same thing as a blepharoplasty (which is a cosmetic procedure). A bleharotomy is a procedure for doing eyelid retraction surgery for Graves’ Disease patients, and has been shown to be highly successful with few complications. However, the description of removing fat from around the eyes sounds more like a blepharoplasty, and that won’t help the function of the eyelids. It will help the appearance, and usually insurance won’t pay, even though these fatty deposits were caused by the disease.
Even though a blepharoplasty can be done by any plastic surgeon, it’s important for Graves’ Disease patients to have it done by an oculoplastic surgeon. When too much fat is removed, or if the eyelids are tightened too much, it can cause more problems than it solves. The surgeon I’m seeing now does corrective surgeries on botched cosmetic surgeries, many of them blepharoplasties. I think you’re wise to learn all you can about the procedures before having anything done. It’s much easier if you have it done right the first time. Finding the most qualified surgeon possible to do the surgery is worth the time and effort. (I’ve had over 30 surgeries in the last 15 years, and many of them were a direct result of surgical complications, so I’m speaking from experience here.)
It could be that your surgeon is thinking of doing both procedures. The tendon procedure could be one involving the lateral canthal tendon, which controls the muscles to the lower eyelid. I’ve had a procedure known as a "lateral canthal resuspension" intended to raise my lower eyelids, but it helped only temporarily. I’m sure it’s different for every patient, but you might want to know exactly what your doctor plans to do (and why) going in.
As in your case, my proptosis wasn’t the worst I’d seen. It wasn’t immediately threatening my vision, but it was certainly disfiguring. I always hated it. Back in 1996 when I was diagnosed, orbital decompressions weren’t done simply because the patient felt disfigured. They were done mostly when vision was threatened, or when symptoms from continued proptosis were so severe that discomfort was profound. The first several surgeries done on me were to correct my eyelid retraction, which was quite significant, and to mask the appearance of proptosis. I had medpore orbital implants, meant to look like bone, thus putting the relative position of my eyes not so far out. Unfortunately, one implant became infected and had to be removed. It was later re-implanted, but the muscles of my face didn’t stay attached to the implants and pulled my lower eyelids down as they drooped. I ended up looking like a hound dog, and hard palate grafts failed to raise my lower lids. During these surgeries I also had upper lid retraction surgeries that failed, as the scarring process (fibrosis) of TED that occurs during the healing phase in some people caused my lids to bounce right back up again.
Eventually I had a procedure that managed to get my upper lids in position, but my upper lids eventually became droopy, so with both droopy upper and lower lids, it wasn’t nice. I still wasn’t happy with my buggy eyeballs, so by 2002 my surgeon agreed to do an orbital decompression, thinking it would help my lower eyelid position too, and that was the procedure that made me the happiest of all. It did more for restoring a normal appearance than anything that had yet been done. On top of that, I awoke from the surgery feeling a relief of pressure behind my eyes that I hadn’t even realized I’d been feeling. After that I had a mostly successful procedure to bring my lower eyelids up (finally!) which unfortunately resulted in the loss of blood supply to part of my eyelid in the area of my face that had previously been infected, so I lost part of the lower eyelid in 2006. It will be reconstructed this spring (the surgeon gave it time to develop a new blood supply). This will take two surgeries, #9 and 10, and then my droopy upper lids will be addressed. Then I hope to be done! (i still have double vision, but it can’t be surgically corrected because it varies too much.)
I think these days, orbital decompression is worth considering for anyone with any degree of proptosis. There are procedures available from mild fat removal for very mild cases, to staged bone and fat removal for severe cases. There’s no reason these days for a person to be forced to remain disfigured by this disease (other than lack of insurance and other financial resources).
At the same time, there’s no sense seeking a surgical solution too soon. If Ski had been in a hurry, she might have chosen to do something, but when I saw her at the Conference this year in San Diego I was amazed to see how much improvement she had undergone; so much that if I didn’t already know she has Graves’ Disease I wouldn’t guess it now. I don’t know how often this happens, as I know plenty of people who were treated years ago and chose not to seek surgical solutions, and didn’t ever improve. Among those you probably all recognize are comedian Rodney Dangerfield and actor Marty Feldman.
Kathy, feel free to click on my name and send me an email. I’d be glad to give you a call if you want to talk more about this.
in reply to: New here, have lots of questions #1074125Hi Crista, I’m glad you found us.
You made a good decision to be treated conventionally. There is no evidence that any alternative treatments have ever been able to help in the treatment of Graves’ Disease, and left untreated, Graves’ Disease can be very dangerous, even fatal in some cases. When treated, most people have a very good outcome. If you decide to use any alternative treatments along with your meds, be sure to tell your doctor, as some herbal substances can actually be dangerous for people with Graves’ Disease (or interfere with treatment). Kelp is one notable supplement that should be avoided.
Not everyone with hyperthyroidism loses weight, especially if the hyperthyroidism isn’t severe. Hyperthyroidism causes an increase in metabolism but also causes an increase in appetite, so in some people the two balance out, especially when the associated fatigue cause a decrease in energy expenditure. Some people even GAIN weight when hyperthyroid (I was one of these).
Talk to your doctor about whether it’s good for you to be exercising right now. Most doctors advise their patients to wait until thyroid levels are under control because of hyperthyroidism’s effect on the heart and muscles. Right now, restoring your health is more important than weight concerns, which you can prioritize when your safety is less of an issue and your doctor says it’s okay.
Usually within six weeks on the methimazole your thyroid levels will be normalized and you will begin healing. Your doctor will need to monitor your blood levels to make certain he isn’t over-treating you so you don’t become hypothyroid, and if he does a good job of that and you don’t have side effect issues with the drugs, you will probably feel quite a bit better before long and perhaps see a remission when you stop the meds in 12-18 months. In the meantime, you can hang out on this board and learn about your other options in case it doesn’t go that smoothly, and talk with others going through similar experiences.
Best wishes,
in reply to: My flue and hyperthyroidism #1074155I remember having flu-like illnesses more often when my thyroid levels were either too high or too low, but I did recover within a reasonable period of time. It might be different for you, but at this point I think you should be sure your doctor knows this is happening. I suspect you’ll be told not to worry, but he may want to do tests to make sure your white cell count is okay since you’re on methimazole.
I certainly understand your frustration at feeling ill and wanting treatment that will put an end to being sick. You’re still in the early stages of ATD treatment, and you may find that in two or three weeks more you start to feel significantly better as the effects of the drugs begin to benefit you more. When that happens, you’ll be in a better position to make a reasoned choice between all three treatment options and you might want to look at all three again when your body and brain aren’t under attack by excess thyroid hormone; when you aren’t in a hurry to make any choice because you don’t feel well. If you still feel at that time that surgery is your best option, then you’ll probably be happy with it long-term.
In the meantime, take good care of yourself. I hope you’re getting lots of rest. Are you able to take time off work for the flu, and do you have people in your life who can help you at home?
Best wishes,
in reply to: Pregnant 3 Months After RAI, will it hurt baby?? #1074171Oh, sorry–I misread what you said. I thought you couldn’t get an appointment for a month, but you actually said next week. You can probably wait a week if you have to, but obviously for your peace of mind it would be better if the doctor could see you right away and test your thyroid levels, especially if you think you may have a major change that should be attended to. Use your judgment on that. If your levels seem stable it’s probably not as vital that you be seen right away. If you think your levels might need to be adjusted, then that probably is important for your baby.
in reply to: Pregnant 3 Months After RAI, will it hurt baby?? #1074170The important issue here will be normalizing your thyroid levels as soon as possible, so i agree with Madam X that seeing a doctor can’t wait. Are you still hyperthyroid, or have you become hypothyroid yet? It will be important that you do not remain hypothyroid and that your thyroid levels don’t fall behind where they should be, which is difficult enough at this point following RAI even for women who aren’t pregnant.
A recent study indicates that about 25-30% of doctors involved in treating pregnant patients are not up to date on the information they need to give pregnant thyroid patients proper care, so you will have to be especially careful in finding a doctor capable of properly advising you. This is a case where getting multiple opinions is definitely in order if you have any reservations about advice you’re receiving.
Ideally you will be able to find an ob/gyn who will work directly with your endocrinologist so that your baby’s well-being can be balanced with yours every step of the way. I would think you will need especially tight monitoring, beginning NOW, and I hope you won’t wait a month for your appointment, since both your well-being and your baby’s are at stake. At the same time, I don’t want to see you worry too much, as I think there’s every chance your baby will be okay.
Please let us know when you have found some expert help with this!
Best wishes,
in reply to: Allergic to PTU…Headed for RAI…What to Expect? #1074460Soulshine, how long has it been now since your RAI? Do you remember what dose you had, and how long it took for you to become hypothyroid? Do you have the eye disease? Are you feeling well now?
Dianne
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