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in reply to: Been missing for awhile but will try harder #1073385
Jake, great to see you back!
And to anyone who doesn’t know Jake, he’s an amazing storyteller who can keep a roomful of people mesmerized or literally rolling on the floor in laughter, and this ability translates in his writing. I’ve read several of his books, and was amazed at his writing ability!
Jake, I can’t believe you’re going under the surgeon’s knife yet AGAIN! How many is THIS?? Can’t you give it a rest?
And I hate to be the bearer of bad news, but you should be warned. Rotator Cuff surgery is probably high on the list of the world’s worst surgeries. You may not feel like doing much during that time you’re off. Ken’s had two of these done, and for anything else he’s been a brave guy, but for this, NOT! He was crying for mama. I warn you ahead of time to get all the pain meds they offer you.
Ken’s doing much better and was glad in the end to have the surgeries done, so I hope you will too. Good wishes, Dianne
in reply to: Post-RAI Gastroparesis, Anyone? #1073549Sherta wrote:Hi,Both, hypochlorhydra and pernicious anemia are common to Hashimoto’s Thyroiditis. Although you probably already know that once your thyroid has been ablated by RAI you become hypO where everything slows down — including digestion. Also, you may want to seriously consider eliminating gluten as gluten intolerance or Celiac disease is common for a HypO person. (That is, if you want to regain any significant quality of life back.) Gastroparesis can be a symptom of Gluten Intolerance. These problems are NOT unique. Surprised? My doctor never warned either I found out by researching. ALWAYS, again, "always" check out anything you are told. It may very well SAVE your life.
While it may be true that Celiac disease (gluten intolerance) is associated with Hashimoto’s Thyroiditis, it’s not because of the hypothyroidism per se, but because of the immune dysfunction common to both conditions (and which also is higher with GD patients). Therefore, making a person hypothyroid by RAI would not create a higher risk, whether or not the patient was made euthyroid later. Perhaps this is the reason your doctor didn’t warn you of the risk. There’s an autoimmune connection, but not specifically to being hypothyroid, and not everyone has it. The connection is simply that a slightly higher percentage are affected than without autoimmune thyroid disease.
Be careful when doing your own researching. Doctors aren’t gods, but they have training we don’t have, and it’s important to get their opinion and make sure your information is coming from reliable sources; especially if the "research" you’re doing is on the internet. A lot of what you find out there borders on laughable, if it wasn’t so scary.
It would be premature for everyone to eliminate gluten when only a small percentage have Celiac Disease. If there are reasons to suspect it, by all means get tested. It’s not that easy to live with a completely gluten-free diet, so a person needs to be committed to make that work. There needs to be a compelling reason to muster that kind of commitment, don’t you think?
in reply to: Having Surgery in two weeks, and am nervous!! #1073415Ski’s suggestion to ask the surgeon about complication rates (in order to get an idea of risk of death) is a good one. I too am quite sure it will be zero. I have read that on a national level, death rates for this surgery are next to zero these days. You are simply being warned of the risks that exist in ANY procedure.
I do understand the fears of leaving your children without a mother, since I let those unreasonable fears color my decision when I made it 13 years ago, choosing RAI entirely on that basis rather than on what might be best for ME. In all these years I’ve never known anyone to die of ATD treatment or thyroid surgery. In hindsight I’d have chosen both of those before RAI.
Maria, I bet you didn’t have young children at home when your doctor gave you lax post-RAI advice. They like to spend long periods cuddling, with their little thyroids right next to Mommy’s thyroid, and there isn’t a way to explain to them that it’s dangerous to their developing gland. It hurts their feelings to be rejected by Mommy, so it’s better if Mommy simply stays away until the radiation has a chance to decay.
I hope you weren’t on a long flight.
in reply to: Edema anyone? – not PM #1073431I’ve had edema since the start of my Graves’ Disease, and my endocrinologist says that’s not uncommon. At times my legs and feet swell so large they look like elephant’s legs. I’ve had heart testing and kidney function tests, and tests on the veins of my legs, and all are normal, so the doctors have found no cause other than GD for my edema. The worst forms last for a couple of months and then go away without explanation, but can actually cause me to gain from 7-10 pounds while it’s going on. I don’t have the orange-rind rash, so whether or not this is pretibial myxedema, I don’t know.
Do you have TED? If you don’t have fairly advanced TED, then it’s unlikely that you would have PM either.
in reply to: Thyroid pain anyone? #1073408The only time I had thyroid pain was after my RAI, when the cells were damaged and becoming even more hyperthyroid. Pain and swelling are usually a sign of inflammation, and when that’s occurring in your thyroid that could signal even MORE output of thyroid hormone. So if you haven’t already put in a call to your doctor to see if there is something that should be done, I hope you will do that. Specifically, I am concerned about a possible thyroid storm. It can come on suddenly and be very dangerous, so do give him a call!
in reply to: Yet Another Request for Help with Numbers #1073442kaicee118 wrote:Just as an aside – this is my second round of Graves, and it’s definitely "stronger," or more aggressive, this time. I’m taking at least twice the amount of tapazole I took the first time, and the first time my numbers were within normal range within a month.That’s really interesting. Thanks for sharing that!
in reply to: Yet Another Request for Help with Numbers #1073440Your doctor will definitely have to answer whether you will need a dosage increase or whether it will take more time, but I can tell you that I’ve heard many people say that their T3 levels were more stubborn to lower on ATDs than the T4 levels. Do have this discussion with your doctor about the reasons for this in your case (which could be different than for someone else), and let us know what he recommends!
Best wishes,
in reply to: Treatments for Eyes #1073488Pizzicatto,
Systane is a very good over-the-counter artificial tears lubricant, and my favorite of all that I’ve tried. I use it very frequently to help keep my eyes from drying out. The red, gritty, burning, and watering eyes, are a symptom of dryness. The more often you use the Systane drops, the less you’ll experience those symptoms. If you forget to use it today, you’ll pay the price tomorrow with more pain.
You asked how long you’ll have to wait to see what will happen with your TED. Most of the time, the active phase of the eye disease (the period during which worsening takes place) will be within a 1-2 year period from when it starts. (It can be longer if you smoke). I know it’s difficult waiting during this period, but you can help the outcome by working with your doctor to keep your thyroid levels as normal as possible, and helping to make certain you don’t become hypothyroid.
Other than that, keep in mind that while it’s common to have mild symptoms of TED, very few will have the severe manifestations. In other words, the odds are in your favor. Chances are that you’re seeing the worst already, and over time even this will probably improve in the future once the disease stabilizes. Your ophthalmologist will have a good idea when he hasn’t seen any changes for six months or so that you’re probably over the active phase.
Best wishes
in reply to: Orbital Decompression Surgery #1074417Shelby,
Let me caution you that you won’t walk out of those decompression surgeries with the results you want, but you’ll have a beginning. If you are interested in seeing some realistic before/after photos just send me your email address by private message and I’ll send you some photos of what I looked like a few hours after the decompression and then what I look like now, so you’ll have an idea what time does. And I WAS thrilled with my results at the time.
Good luck with your surgies. I believe you’re going to be happy!
Best wishes,
in reply to: Treatments for Eyes #1073485I recommend you try the Restasis. Its mode of action is as an anti-inflammatory on the tear-producing glands, which is why it takes a month or more to become effective; but it actually can stop the damage that is working to destroy your tear production, and can even reverse some of it, if you are having this damage. There’s no guarantee it will improve over time if you do nothing to treat it. It might get worse instead. If your dryness isn’t caused by this kind of inflammation then you won’t be helped by Restasis, but it’s worth a try. It does sting mildly when first applied, but you’re using it as a treatment, not as a soothing drop, and the stinging doesn’t last more than half a minute. I find it’s well worth it for the help it gives me.
The punctal plugs are also worth a try, especially if you do computer work. I have all four of my puncta cauterized, but my case is severe. You will probably love having the lower puncta done.
You might also download this little utility that will remind you to blink frequently: http://www.dryeyezone.com/reminders/index.html One of the reasons being at the computer is difficult is that we fail to blink when we should. I have to force myself to blink every 6-10 seconds or keep that "blinker" on my desktop. (The blinker is a little blinking eye, and is available in a choice of eye colors.)
The eye disease will usually become inactive after a period of time (around two years), meaning it will stop getting worse and possibly even improve some. That doesn’t mean it will return to normal. In a few people with the milder forms of the disease, and in some fortunate people with moderate forms, a lot of the eye changes will reverse, but for many others, especially those with significant proptosis and eye muscle involvement, and who have fat deposits in the tissues around the eyes, the changes are permanent without corrective surgery, and even then in cases such as mine, the eyes will never be normal. In spite of all the best treatments, I have disabling dry eyes and can’t spend time outdoors or in any moving air, as I’m continually fighting against painful corneal erosions. So use everything you can, but unfortunately you can’t expect it to go away.
in reply to: Hereditary? #1073454Hi ElectricBlue,
First, the genetics for Graves’ Disease is hereditary, but that doesn’t mean that any of your children will necessarily get Graves’ Disease. There is a genetic defect that is about 30-40% responsible for the disease, but there also has to be some kind of environmental trigger to set off the genetic possibility that exists to get the disease. Not everything is known yet about what all might act as triggers in people with this genetic defect, but also not all of your children would necessarily inherit the defect. Besides that, other kinds of autoimmune thyroid disease are closely related to Graves’ Disease and occur in the same families, so it’s possible your children would get one of these rather than GD.
I didn’t think there was any thyroid disease in my family 13 years ago when I was diagnosed, but soon found out I had an aunt with Hashimoto’s disease (hypothyroidism). Not long afterwards, my daughter also was diagnosed with hypothyroidism. Then a few years ago, a male cousin was diagnosed with Graves’ Disease, and just this year a sister was diagnosed with hypothyroidism. So as time goes on, you too may discover more thyroid disease in your family than you’re aware of now.
As for your second question: RAI doesn’t cause either sterility or potency problems in men who have had it. It’s true that the amounts of RAI not taken up by the thyroid are excreted in the urine, but the amount of radiation any part of your lower body is exposed to doesn’t exceed that you would receive in a couple of CAT scans, and no one worries about that (when it’s needed for diagnostic purposes). There may be reasons you choose not to have RAI, but you can be assured there would be no harm to your ability to have a normal sex life or to father a healthy child. This has been studied for many years. As with all the environmental radiation we receive daily without even realizing it, RAI causes small amounts of mutations to DNA, but not on levels high enough to translate into birth defects. It’s an individual choice whether to add that much more to what your future progeny will already unavoidably receive.
Should you decide not to continue with antithyroid drugs and you don’t want radioactive iodine, remember that you can always have a thyroidectomy. That has been a popular treatment choice for young people, since until recently RAI was not given to children, or even young adults.
I hope that your hyperthyroidism doesn’t return and that you are in remission. Please let us know!
in reply to: Graves and weight gain, also alt treatment #1073465Your Free T4 levels are similar to mine at diagnosis, and you gained a similar amount of weight to what I had gained when I was diagnosed. My doctor said it’s not uncommon for patients to gain weight when the hyperthyroidism isn’t severe, because the appetite is stimulated but fatigue sets in, and the energy balance isn’t what one would expect.
The outcome for me, having untreated hyperthyroidism, was worsened ophthalmopathy. One of the most important things you can do to help your eyes is to normalize your thyroid levels as soon as possible. (I ended up having 9 surgeries on my eyes, so far.)
There’s no evidence that any alternative methods help control thyroid levels. For some people hyperthyroidism has a natural course of remissions and exacerbations, and for others it seems to worsen without remitting. Antithyroid drugs help bring about remission because they have an immunomodulatory effect and help reduce the antibody levels, and also bringing thyroid levels into normal levels helps the immune system, which has a spiraling beneficial effect on controling the antibodies that cause the problem. Since the eye disease is a related problem, this is potentially protective for the eyes, though it doesn’t guarantee there won’t be problems.
There’s no harm in seeing a doctor who wants to treat you as a whole person or who wants to use alternative methods. There might even be help in this, but you must always treat Graves’ Disease with one of the three treatments that works to control it, first. If any other method worked, we’d all be using it.
Hair loss is a symptom of thyroid hormone fluctuations. I lose hair whenever I change doses of replacement hormone, and have had hair loss when I had RAI, or any time there was an event that caused a change in levels.
in reply to: insecurity? #1073581debruyn wrote:Wow- thanks! That’s great info to have. I would like to stay on the meds if possible. But the doc has been saying that I can’t do that forever.You can tell your doc that it’s not forever yet.
in reply to: DENIED!!!! #1073482It’s standard for these claims to be denied the first time. Money is saved, because many people take that at face value and give up. That’s unfortunate, because the truly deserving end up lost and confused in this system and end up forced to hire a lawyer and give up part of their disability income (when they eventually DO get it) to the lawyer.
What is "severe" to you and me may indeed not be "severe enough" by law to be a disabling condition according to Social Security Disability. It’s possible to be dying of cancer and still not be ill enough "yet" to qualify. There’s a strict set of criteria that has to be met. If you carefully read on the Social Security Disability website you can find out exactly what you need to prove when you fill out your forms if you expect your claim to be approved, and then you will need to have supporting medical evidence from all your doctors.
Most of the time, Graves’ Disease isn’t considered a disabling illness unless the patient has severe ophthalmopathy, and the ophthalmopathy itself is a disabling condition that prevents the patient from working.
To be considered disabled, you have to be unable to do any gainful employment for at least a year, and to be following all treatment recommendations. Very few people with Graves’ Disease would be too ill to work at all for an entire year while following recommended treatment protocols the entire time. If you are one of these cases, do not give up, because if your doctor is on your side, you most likely will eventually be approved. Be certain that your doctor has complete records on your case. because any deficiencies in that regard could hurt you. Be certain also that you list all the doctors you’ve consulted for depression or any other related symptoms, and that you detail how your depression and pretibiial myxedema have affected your ability to work. Don’t assume those people have any understanding of this disease. Tell them all about it!
in reply to: need some questions answered…new to this!!! #1073920Carole,
The test results returning to normal do not (unfortunately) directly correlate with behavioral symptoms normalizing. Once blood levels have stabilized and remained stable for a considerable period of time, then the body can begin recovering from the damage that caused the behavioral symptoms, and you will see a gradual improvement in those symptoms over time.
RAI takes (typically) two or three months to control hyperthyroidism, and from there will cause continuing thyroid failure of one degree or another during the next 6-12 months (or in rare cases, several years). If all goes really well the period of instability is less than this, but 6-12 months of instability is a rough working figure, keeping in mind it could be a little less or much more. During this period, it’s quite likely she would experience another period of mood swings and attention problems. I had MUCH more difficulty during that period, in fact, than I did while hyper. Some people don’t experience it that way. It depends partly on how each body reacts and partly on how well the doctor adjusts thyroid replacement hormone; but when thyroid levels don’t remain stable for long, the body simply can’t get well.
I haven’t seen statistics on the matter, but I imagine it happens fairly often that children with hyperthyroidism are first thought to have ADHD, since symptoms are so similar and the latter diagnosis made without a blood test.
I recommend that you give her a chance to get well using ATDs and in the meantime, learn as much as possible about the treatment options for this disease so that if in the future a more permanent choice becomes necessary, you’ll be prepared to make an educated choice. She’s very young still, and while RAI can be given to young children and so far there is no evidence of problems, it’s also true that this hasn’t been done for long enough yet to have safety information available from long-term studies, as we do for adults. So before you go that route, be sure to get several different opinions on the subject.
Best wishes,
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