[Ski]

in reply to: GD Symptoms Suddenly Worse #1068569

Stress can promote antibody action ~ which, for us, is no favor ~ so that may have something to do with your recent spike in symptoms. Just the fact that you’ve been anxious about it could take things off into a spiral and make it more difficult for you. While there are no absolutes with this, and very little scientific proof of causes, it would appear that less stress on your body will lead to more healthy levels in the long run, so you may want to investigate anything that recently changed (besides the change in medication), in terms of diet or surroundings or activity level. Try returning that thing to its earlier state and see if that helps.

When you’ve gone through the initial process with meds and "worked down" to a low dose that maintains your levels, that is the dose that works for you THEN. Once you’ve stopped the meds and are restarting, you likely need to take a little more at first in order to work down to that maintenance dose again.

Take it easy, try not to fret ~ the fact that you did not attain a remission at this point does not mean you are done with the meds, but it would suggest that you need to either continue taking the meds at a maintenance dose for a LONG time, or else make another decision of treatment. You can use the meds to "calm yourself" while you make the decision. Just make sure you are comfortable with your choice, it makes ALL the difference as you recover.

[Ski]

in reply to: At a crossroad, want your opinion, please. #1068625

It can be very hard on your body to have fluctuating thyroid hormone levels ~ nearly as debilitating as a chronic imbalance on one side or the other ~ so while destruction of the gland and subsequent replacement hormone may seem to be just another "see-saw," the advantage is that the antibody action will have no effect whatsoever after the thyroid is no longer responding, so it can be easier to get to, and maintain, a normal thyroid hormone level.

Some people have an easy time doing that with ATDs, while others do not, and for you it appears you are in the latter category.

For replacement hormone, the result is not instant, but stability gets closer all the time, and after you’ve found your perfect POINT, lifetime maintenance is usually just an annual blood test.

[Ski]

in reply to: New to Grave’s Diagnoses #1068599

Except for the fact that you had options for your treatment that were obviously not communicated to you, it appears that you are being given good information, if not the support you need. So, we’re glad you found us here for that support!

It is pretty common for patients to be led to destruction of the thyroid upon diagnosis of Graves’ Disease, and that appears to be what’s happened with you. The excess thyroid hormone in your bloodstream can take up to six weeks to flush out after the treatment, so it is VERY common for patients to feel very little difference in their symptoms after just a couple of weeks. In addition to that, the thyroid cells that are being destroyed by the ongoing process of the radioiodine are ALSO dumping the thyroid hormone they’ve been storing into your bloodstream, as they die, and this can lead to a period of EXTRA hyper symptoms, right around the two-week mark (where you are). Typically that only lasts a few days, then begins to subside.

It’s very true that you may not feel remarkably different before the three-month mark. Dosing for destruction of the gland is part art, part science, and we also each react differently, so it’s literally impossible to know when you will drop into completely hypothyroid levels.

October is still a couple of months away, but I can understand your hesitation to be somewhere that provides you no health care at a time when you will likely need some type of monitoring. Is there any way you can have blood drawn at affiliated facilities in the U.S. and have it covered by your Canadian insurance? If you can get test results faxed to your health professionals and prescriptions phoned in to local U.S. pharmacies, you could likely keep your trip intact. Replacement thyroid hormone is VERY inexpensive, even without insurance, so at worst you could pay for that out of pocket, IF you drop into hypo ranges and require it before you get home. Doctors typically "start low and go slow," so if you find yourself hypo, you could buy a 100-day supply to best cover you ~ pill splitting could be a help (the doctor could prescribe double the dose you need, then you could take half a pill each day, reducing the cost to you, and extending the life of your one prescription). Six months is a long time, and you will DEFINITELY need some level of monitoring at least, so I would suggest figuring out how to make that happen before making the decision whether or not to go on the trip. If you go hypo and wait to begin thyroid hormone replacement, it’ll just take longer before you feel well, and the time in between will be a real slog.

Now, your sleep issues ~ VERY common while we are hyperthyroid, by the way. It’s tough to manage, I remember, and we need to know that it’s CHEMICAL. It’s not that we just "can’t relax," it’s that our body is revving and we can’t just "think it away." Since you’ve been treated, things should begin to settle eventually, but not necessarily right away. Try the basics ~ a bedtime routine that includes something like a long hot bath or shower, some type of relaxing activity (reading, NOT TV), perhaps a sleep aid (but of course, be careful with that) and maybe a lowered expectation of how many hours you will sleep. It’s been studied and they have found that lying in bed, being completely still, can provide almost as much benefit to the body as full sleep, so try not to be anxiety-ridden over the sleep you are NOT getting, if you catch my meaning. Do all you can to rest, and if that’s unsuccessful and you find yourself getting anxious, get up and do something calming for a little while, then try again. Try short daytime naps, if you can do that. Just kind of fit in your sleep when you are able, and try not to stress about it TOO much. Once it becomes "chronic," we can have an emotional component that is much more difficult to break through, so do your best to just take it easy and do what you can, knowing all the while that your normal sleep patterns will return after your thyroid hormone levels return to normal and stabilize.

I hope that helps! Let us know how things are going for you!

[Ski]

in reply to: referral please! #1068915

I haven’t needed to search one up, sorry about that. Nancy’s suggestion to look at http://www.asoprs.org is a good one ~ affiliated doctors have special training in the issues of TED.

[Ski]

in reply to: My 11 year old daughter just diagnosed! #1068637

Hi WorriedMum,

Ablation is total removal of the gland, either through RAI or thyroidectomy. The post earlier referring to "ablation through carbimazole" is a bit misleading, because carbimazole (U.S. tapazole) is a medication used to control thyroid hormone levels through a hyperthyroid episode ~ it doesn’t actually destroy or remove the gland, just gets the patient back to normal levels, in most cases, given compliance with taking meds and good response to the medication.

I feel for those of you making these types of decisions for your youngsters ~ it’s hard enough when we’re making the decision for ourselves! Luckily, your children are old enough to understand what’s going on and what the future consequences are, so I would recommend letting them in on EVERYTHING and giving them the power to choose. It can make a world of difference in recovery, having a patient who is fully "on board" with the decisions that are being made.

Hope that helps!

[Ski]

in reply to: referral please! #1068913

If you do surgery too soon (while the eye disease is still active), you can end up doing more harm than good. You have to wait until the confirmed cold phase of TED, and that can take anywhere from a year to three years, with no good information on how long it will be for each person. Patients who have smoked cigarettes are more likely to have a longer period of active TED, but that’s the only determinant. If surgery is done while the disease is still active, the antibodies can be triggered into a fresh period of activity that can negate any positive effects from the surgery and limit the ability of future surgeries to help.

[Ski]

in reply to: graves and drug abuse #1069036

Graves’ takes a while to recover from, so please give yourself a break during this time. If your medications are helping you sleep and keeping your anxiety levels down, that is EXTREMELY important right now. When we are hyperthyroid, our body is literally under attack every minute of the day. That causes harm in all sorts of ways, and it takes a good long time to heal. In addition to that, we don’t even begin to heal until our thyroid hormone levels are normal, and stable, so just remember that you’re being treated, it’s getting better, but you are NOT well yet, and no one (not even you) should expect that.

[Ski]

in reply to: TED & orbital radiation therapy #1068979

Lots of folks here have been through it ~ if your vision is not threatened, often it is not worth the risk of prednisone or radiation therapy. This is a topic for discussion with your ophthalmologist. Thyroid meds typically have no impact on the eye disease ~ they are separate diseases. Sometimes hypothyroid can trigger swelling in the tissues around the eyes, but not behind the eyes, that belongs solely to TED. For the most part, TED "resolves" to the best state possible within a period of 1-3 years (smokers are typically the people with longer periods of time), then you can talk with your doctor about correcting whatever issues remain with surgery. Some people revert almost completely to normal and never need surgery, just so you know. The side effects with prednisone do not necessarily happen to everyone, but I believe some of the effects are common (moon face, weight gain, feeling tired). The advantage of prednisone, if your vision is NOT threatened, is in keeping the overall swelling down, which minimizes the need for surgery afterward, but that needs to be balanced against the side effects.

[Ski]

in reply to: What’s your input on conference speakers? #1071132

Lakeview,

You will NOT be alone with these issues, I promise! There is no better group to be with when you are feeling down, I can tell you that for a certain fact.

[Ski]

in reply to: TED & orbital radiation therapy #1068976

I have not heard that about the radiation therapy (twice in a lifetime). We’ll have to ask about it at our next conference. They spoke at length about it last year, I would have thought that detail would’ve been high on the list of things to say about it. We’ll get some clarification.

[Ski]

in reply to: TED & orbital radiation therapy #1068974

Orbital radiation does much the same thing as prednisone. At our last conference, the doctor indicated that he often uses both orbital radiation and prednisone in order to limit the amount you need to use of each, if you catch my meaning. If you’ve had success with prednisone, you are likely to also have success with radiation, but neither of these things do anything to bring you back to "normal," they just keep the swelling from getting very much worse. It can help to keep your need for surgical correction at a minimum as well. Ask the doctor what benefit they feel they can ADD to your current treatment, because you don’t necessarily need it at this point unless your optic nerve is in danger of being compressed.

[Ski]

in reply to: Antihistimine & GD ?? #1069224

When we avoid novocaine, we can still have anesthetic, we just get a different one with no ephedrine. The dentists are familiar with it ~ it just takes a little longer to take effect, and doesn’t "stick" quite so long, so if you’re having a long procedure, they need to do a couple of "top-up" shots during the procedure (but that’s only happened to me once, at the oral surgeon). I had a dentist who forgot, and the ephedrine made my heart rate skyrocket and I felt weak for the better part of a day. I always double check now.

[Ski]

in reply to: Hi, everyone! I’m the new facilitator. #1069066

Welcome, Ellen! It’s great to have you here!

[Ski]

in reply to: Newly diagnosed & have questions please #1069152

The hair loss is usually minimal ~ people hear "radiation" and "hair loss" and envision chemo-type hair loss, which we typically do not experience. Not even close. It’s a reaction of the body to rapidly shifting (or way out of whack) thyroid hormone levels, where the body removes support from "non-essentials" like hair and nails, so just a little more hair than usual is lost. It resolves when levels stabilize, and usually does not result in anything that people will notice much. If your hair is very thin usually, you may want to just get it cut shorter for that period of time, in a style that you don’t have to mess with much. It’ll reduce the amount you lose, and short hair looks less scary when you see it on the pillow. Avoid coloring/perming during that time as well, and skip the hats. Anything you can do to baby it will minimize the loss.

[Ski]

in reply to: recently diagnosed with graves #1069121

Just a quick comment about aspartame ~ there is no scientific proof of any connection, though the internet is rife with statements of causal links. It’s possible that misuse of aspartame serves to weaken the body and help trigger the disease, but the potential for Graves’ (or any autoimmune disease) is genetic and has nothing to do with aspartame.

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