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There seem to be two groups of patients, one that adjusts well and has no problems and the other that has continuing problems. Both sets of experiences are real. My personal guess is that as Ski said this is possibly a matter of whether thyroid tissue remains for a particular patient and therefore can still continue to fail or fluctuate because of the antibodies.
This is a difficult decision to make, no doubt. I second the motion that if you decide on RAI, you have a high dose so that you can avoid fluctuations, getting the thyroid inactivated quickly and giving yourself the opportunity to rapidly establish the proper replacement dose, as if you had done a thyroidectomy.
While there isn’t a problem with fertility for RAI patients, you should know that all radiation causes small changes to DNA, which is one of the reasons all medical and diagnostic radiation is kept to a minimum. It takes a lot of these changes (mutations) to cause an actual birth defect. Since most mutations are recessive, they aren’t likely to show up as birth defects, as it usually takes two pieces of defective genetic material on the same gene (one from each parent) to cause harm that shows up in the child. Since both parents aren’t having RAI, it’s not a problem. But with a world that’s continually exposing people to radiation from one source or another, if we didn’t use some discretion about limiting radiation exposure, eventually we’d be seeing more and more birth defects. So it’s an entirely individual decision for each patient whether the safety of RAI for the patient vs. having a thyroidectomy is worth adding some tiny mutations in DNA to the gene pool.
Long-term studies done on RAI patients have shown that they do very well. There’s a slightly increased risk of mortality, which is mostly in the year right around treatment, so the mortality isn’t from the RAI but from the hyperthyroidism. Total cancer rates are slightly reduced compared to age-matched controls, surprisingly. Within these numbers, there are in some studies slightly increased risks of cancer of the thyroid and small intestine. (Other studies don’t find this, but that was one of the largest studies.) However, total thyroid ablation would eliminate the thyroid cancer risk, and it was uncertain whether the small bowel cancer was related to the RAI or to something about hyperthyroidism itself.
If we haven’t covered any of your concerns, please let us know. You aren’t alone with this. This board is what helped me through my hardest times 13 years ago, and we can be here for you now.
in reply to: Question for 12 month post RAI/ Surgery people #1072639I am 13 years post RAI. At 12 months post RAI I definitely felt worse than before treatment and my BMI was just above the top of the healthy range, though it had been quite normal before Graves’ Disease. In subsequent years I was able to take off the excess weight. I also discovered what it took for me to feel mostly okay again, though I have never felt as well as I did before Graves’ Disease. My memory and concentration are affected, but gradually I got rid of the feelings of anger and depression that were such frequent symptoms during the years when my levels fluctutated. The fatigue also abated, but returned when I got a second autoimmune disease.
What about you, genuine Ruby? How are you doing so far?
Wonderful tips! I have to mention that exercise should be with a doctor’s approval only, as it will depend where each patient is in the treatment process whether and how much exercise is appropriate or safe. I assume your doctor is aware of what you’re doing, Melissa?
in reply to: Orbital Decompression Surgery #1074432Hi Beena,
I advise you not to get in too much of a hurry to have the upper lids done. If you have them done before your eyes have finished settling from the decompression then you’ll have a higher chance of being unhappy with the position they’re in later. I speak from experience.
Did you have hard palate grafts on your lower lids, or was some other material used?
Could it be the ointment you’re using that’s causing the blurriness? I realize that’s probably a silly question, but I have to ask to be sure. If you hadn’t ever used ointment before you could be unaware that that causes blurriness. Anyway, I’m sure you’re right that removing the sutures will be of some help.
Good luck with your appointment and I hope your doctor can shed some light on what’s causing your vision problems.
in reply to: Another new member #1072681Hi ely2009,
I’ve had Eustachian tubes that close down, leading to the feeling of pressure in the ears and the same kinds of blocking one experiences when changing altitude. I’ve consulted a number of experts, even at Mayo Clinic, who could find no underlying cause for this, but it began sometime after my GD diagnosis in 1996. I have trouble with it off and on. At one point I had tiny titanium tubes surgically inserted, and this helped. They fell out on their own at some point and the problem was better by then, but it has recurred several times, either with my chronic sinus inffections/inflammation or separately.
Since I haven’t found answers for myself, I don’t know how to help you. If you find the solution, please let me know.
Best wishes,
in reply to: Grave’s onset post menopause #1072864Hi again ejcrn,
You might be surprised, and find that those good days are occurring more and more frequently, until one of these days you find you’ve gone an entire day without even remembering that you even have Graves’ Disease! It sounds to me like you’re doing all the right things and are well on your way.
All the best,
in reply to: Desperately need advice #1072690Lin,
A 2005 study was published in the European Journal of Endocrinology entitled "Effect of long-term continuous methimazole treatment of hyperthyroidism: comparison with radioiodine. It compared ten years of methimazole treatment of a group of patients who didn’t have a remission the first time with a group of radioactive iodine-treated patients. It concluded that long-term treatment with methimazole is safe and that the complications and cost of both groups are comparable.
If telling your doctor about this study or showing him the study doesn’t convince him, I agree with Ski and James that you can try to find a doctor who understands that he is working for you, and who will help you treat this disease the way you are most comfortable.
Please let us know how this goes for you.
in reply to: My Daughter’s Weight Gain #1072736Aravindh wrote:Oh .. I did nt realise that the weight would increase post the Graves Disease cure. I am a GD patient myself and have been on Tapazole. Lets see how it goes. Would Doctor advise us to go to the workouts after we are cured of this disease ? Will we be able to do the normal running ? All these are questions that I am asking to myself. Still without answers. Lets see. Keep posting what you know. Thanks Aravindh K Natarajan.Dear Aravindh,
The excess weight gain statistically doesn’t apply to patients who have a remission with antithyroid drugs. All Graves’ Disease patients regain the weight they lost because of the hyperthyroidism, but it seems to be the patients who become hypothyroid and go on thyroid replacement hormone who end up with excess weight gain. These are the patients who have radioactive iodine therapy, or surgery, or who later become hypothyroid because of the natural tendency of Graves’ Disease to eventually destroy the thyroid (possibly after many years).
Once your thyroid levels are normal, at some point your doctor will most likely advise you that it’s safe again for you to do workouts and do your normal running.
There are many successful athletes who have been treated for Graves’ Disease, and of course they aren’t overweight. It’s not inevitable that weight gain will occur.
Hi Karen,
The website is under construction, so for now it’s not possible to order the bulletins from the website. When the updates are finished it will be a different story. Many people are working hard on this. I apologize for the confusion in the meantime.
I’ve sent you a private message in an attempt to help you with resources in the interim.
This is very early in the process of dose adjustment, and sometimes it can be simply a matter of changes in levels that cause us to feel awful for awhile. Indeed, determining which are hyper and which are hypo symptoms can also be impossible to know. While we’re going through it , this seems like forever, but I can assure you that you’re much closer to feeling well than you probably know.
Do keep the lines of communication open with your doctor, and once you’ve done that, try to be patient. I was SO tired of hearing that word when I was where you are, but the doctor was right. It takes time, but you didn’t have the treatment for no reason, and you will feel the way you hope to again.
in reply to: My Daughter’s Weight Gain #1072732I have seen a good study showing that Graves’ patients who have become hypothyroid weigh significantly more than age matched controls who have normal thyroids. The question still remained whether metabolism has basically changed or whether eating and exercise habits have changed for these patients, but the hypothesis was that it may be a metabolic problem.
Not all treated Graves’ Disease patients are overweight, though many are. I can understand how difficult this must be for a teenager. My personal experience is that maintaining a pre-Graves’ weight is much more difficult than it was before, and I don’t believe my metabolism is the same. We do become accustomed to eating more while hyperthyroid, and that is part of the problem. The majority of America is overweight, not just people who used to be hyperthyroid; so we shouldn’t think that weight control is easy for anyone. It’s not!
The truth is that slim people usually don’t eat very much. A girl who wants to look like today’s social ideal is probably going to miss meals, or worse, unless she’s unusually active or is one of those rare people with a high metabolism for other reasons.
If your daughter is asking for help with her weight issues you could talk to her endocrinologist about whether her thyroid levels are optimum for her. If they are, the next step might be to see a nutritionist so that she can learn to eat foods that have the fewest calories for the most nutritional value and ability to keep her feeling satisfied. It will have to be something she wants to do for herself, of course.
I understand the significance weight has as a social issue for a young girl, especially in high school. It’s something that people can LEARN to manage, given the right information. Your daughter may have to make some difficult choices, but it’s possible for her to lose weight.
Do get professional help for her if you can, though. Too many girls turn to unhealthy behaviors to lose weight when they feel desperate.
in reply to: Orbital Decompression Surgery #1074430Hi Judy,
It’s understandable that you’re nervous. For me, the decompression surgery was the turning point for my eye disease, as far as making me feel somewhat like my old self again. I truly wish you well and hope you’re as happy with the outcome as I was with mine. When you reach up after the surgery and feel how flat your eyes feel (comparatively) and feel that diminished feeling of pressure, give a big smile for me.
” title=”Very Happy” /> Then as soon as you are able, please let us know how you’re doing. I’ll keep you in my prayers.in reply to: Orbital Decompression Surgery #1074429Beena,
I had the decompressions, and I recall having extremely blurry vision at that time too. That was in 2002, so I don’t recall to the day how long it was, but I was able to return to work in two weeks. You should call your doctor about this all the same, and make sure he’s aware of this, just in case it’s going on longer than it should.
Did he put you on Prednisone or anything else to help you with the swelling, post-surgery?
How are you doing otherwise? Are you pleased with the change? If not, keep in mind that you’ll see a LOT of improvement from this point over the next 6-12 months.
Dianne
in reply to: Need encouragement:( #1072769Hello, enough!
I can imagine that you have indeed had enough!!
You’ve come to the right place. Every one of us understands. You can be sure that for every person who has responded to you, there are hundreds who have read this and are feeling empathetic.
It’s easy to feel discouraged, but please know that there are others who have been where you are and are now in long-term remission. It does happen; not for everyone, but it’s possible. If you don’t want destructive therapy, long-term ATD treatment is a valid treatment option for those who do well on low doses.
How wonderful to have a doctor for a hubby? (Or is it? You tell us!)
in reply to: side effects #1072777Buttamama, what can happen next for you? Indeed this is perplexing!!
Imr1023, your options may be to try the other ATD (PTU) or you can ask your doctor about going back on methimazole with Benadryl, an antihistamine, which sometimes helps with allergic reactions. If those don’t work, you’re left with RAI or surgery.
in reply to: Graves disease in Males #1073287Dear Aravindh,
A minority of patients have reported nausea as a symptom. Do talk to your doctor about this.
Perhaps now as your thyroid levels are approaching the normal ranges you can discuss with your doctor if you can begin weaning off the Inderal. For me it caused intolerable symptoms and I couldn’t take it at all. Depression was the worst symptom, and so intolerable that my doctor thought it was more dangerous than the effects on my heart.
This may not be the case for you, but I think you need to have a good talk with your doctor to sort out which symptoms are caused by hyperthyroidism and which by meds. If your levels are now in the normal range you are well on the road to feeling better, and it’s just a matter of time. You may even be closer than you think. Still, it’s important that your doctor is completely aware that you are feeling nauseous and dizziness. I don’t think that’s completely normal as patients are approaching the normal range on ATD treatment. Once your thyroid levels are back to normal and remain there, it takes time (maybe even 6 months or longer) to regain your normal energy and well-being, but you should be getting close to the point where you can begin to heal.
I’ve read your previous posts and most of it sounds like the typical Graves’ patient (fatigue, but staying up late and having trouble getting up in the morning). I know it must be difficult as a young person to have your life interrupted by this. Feel fortunate that you are this much closer to being well, and that you (apparently) don’t have the eye disease. I wish you well.
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