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in reply to: medication question #1173986
My endo also told me to skip a couple of days dose, when I called her (long ago) about feeling hyper symptoms. You are not depleting your body of T4 (keep in mind Kimberly’s explanation of how it builds up), but you might be lowering it enough to see if the symptoms subside. If they do not subside, then the symptoms might be due to something else.
in reply to: methimazole dose #1173920Forget the silk purse and become a squeeky wheel. That 40 pounds of weight loss is likely to have included some — if not a lot — of muscle. Being hyper causes us to lose muscle. It is very bad weight to lose.
Also, being diagnosed but untreated puts you at risk for thyroid storm. This is a medical emergency situation in which the thyroid cells go berzerk and start pouring thyroid hormone into the body. It is relatively rare, but it is more common in UNtreated, or UNDERtreated hyperthyroidism. Another reason to become a nag.
Call the endo’s office every morning to see if there is a cancellation. Be nice about it, but persistent. If there is a cancellation, your name should be up at the top of their memories.
Or. Ask your GP to work with the endo in attempting to figure out a dose of ATD that is appropriate.
Good luck.
in reply to: Well, here goes! #1173478Hi, and Welcome:
I just wanted to chime in and wish you luck with your RAI. I had mine in Nov. 1996, and it made me well again.
I had been diagnosed and treated for panic attacks for a few years prior to my Graves diagnosis. I would get panic attacks on air planes. As you indicated, it was beyond awful. Then, when I went into full-blown hyperthyroidism, the psychiatrist with whom I’d been consulting started beating himself up for not having given me a simple blood test when I had first started to consult about the panic attacks. He predicted they would go away once I got my thyroid under control. They did.
As to the RAI. Expect to be a bit more hyper than normal about one week or so after you get the treatment. As thyroid cells are dying off, they release their stored supplies of thyroid hormone into the body. They are not making new hormone, but since the cells also store hormone, how much might be released is anyone’s guess. I mention this because when people don’t know to expect the added hyperness, it can sometimes be a worrisome.
I hope you are feeling much better, and soon.
in reply to: Switching from T4 to T3/T4 Combo Treatment #1173969There are difficulties adding T3, because it is immediately available to your body’s cells once it enters the blood, even if you do not need it at that point in time. T4 is sort of “timed release” T3– it must be converted to T3 before the cells can use it. So. When I was put on an additional T3, I found that I had to cut the dose in half, otherwise my heart raced. I was taking half of the smallest possible dose of T3, in other words. I mention this because you may find that you need to work with your doctor to make adjustments.
I wasn’t taking it for weight issues — I took it because I had brain fog, and the additional T3 did seem to work for a while to alleviate that. But then I began to have adverse consequences (heart issues) to even that small dose, and I had to quit taking it. I was convinced that I would go into brain fog again, but I did not. So I am not sure how much of what I felt was “placebo effect” and how much help the additional, short-term boost of T3 actually did. Suffice to say, I have not taken the T3 supplementation in eight or so years, and am doing fine. The body is way more complicated than this “amateur” can figure out.
Like everything else involved with replacement therapy, it takes weeks at a single dose to be able to determine whether or not the dose is appropriate. So expect to have to make adjustments over a period of three to six months. You may be pleasantly surprised, and things will go smoothly without additional adjustments.
in reply to: TED and Food Poisoning #1173949Hi, gatorgirly. I’m completely empathetic about the food poisoning bit — my husband and I came down with it after eating some chicken a week ago. My eyes didn’t hurt, but my chest and back were hurting from all the “yakking” that went on.
I think vomiting repeatedly over many hours puts stress on the body, and the weakest, or most stressed areas will let us know about it…..loudly. So, since your eye muscles are already putting stress on your eyes, that added pressure caused actual pain. You could check with your doctor to make sure, but I would suspect that it was something associated with the strain of bringing up food, and not anything additional to worry about.
I hope you are recovering nicely.
Typically, stopping the drug that may be causing the abnormal numbers will allow the liver to recover. Not always: there can sometimes be a more permanent reason why the liver has problems. But typically, if the abnormal numbers occurred after a drug was started, stopping the drug is beneficial. There are any number of drugs which can interfere with the liver function, including alcohol (wine, liquor) and acetaminophin. If your liver is in distress, stopping any of these can be a help, as well.
in reply to: I don’ want to take my pill #1173938Some of the weight we lose while hyperactive is MUSCLE. Muscle weighs more than other tissues, so when we lose muscle, it looks like we’re losing weight. When we get back to normal thyroid hormone levels, we regain muscle, and this looks like we’re gaining weight. But muscle weight is GOOD weight to have. It keeps us strong. And it burns more calories, even at rest, than other body tissues. Muscle is also the dominant tissue in our hearts, and our hearts can be permanently harmed by allowing the hyper condition to persist.
The bottom line is that y ou are choosing to be unhealthy, possibly even debilitated, rather than see a few pounds of “good” weight go on a scale. That is not a healthy choice.
Hi, I got the sore-ish throat like gator girly did, but I was hypothyroid in five weeks, and feeling much better. I didn’t mind the hypo feeling as much as I minded being hyperthyroid. About a week after RAI, I was really hyper for a few days, as the damaged thyroid cells dumped hormone, but I was on beta blockers to help that.
It took a few months before I felt really normal and had some of my stamina back.
I wish you a good recovery.
in reply to: OK now what…RAI Seriously??? #1173303I have been thinking about this topic — long-term use of the ATDs — a lot this week. Yes, in other countries they will allow their patients to use them long term. And long-term generally means really a lot of years. I’ve seen reports of people being on the ATDs as long as 18 years…in Japan, I think. Harpy’s partner has been on PTU for five years now? So, what are we talking about then? Long years, without remissions, on drugs that are known to be hard on the liver. Contrast this to long years spent on replacement hormone which is a substance naturally used by our bodies….i.e. no liver problems. Add to this, that as we age, our livers become less efficient at processing out toxins (the by-products of the metabolism of drugs like our ATDs) and side effects start to increase.
I do understand the concept of every person making their own decisions. But I don’t think we should criticize our doctors when they suggest an option that they believe they have evidence has fewer adverse consequences in the long term.
in reply to: Thyroid Eye Disease #1173380A bit of clarification: you may have not noticed that I mentioned that my double vision corrected during the cold phase, to the point where I only have it when I am very tired or “when I am hypothyroid.” Having wonky thyroid levels does interfere with the functioning of our bodies, including those eye muscles responsible for TED. The distinction is not so much whether synthroid is a causative agent, but whether or not we are on an appropriate dose of it to keep our thyroid levels normal.
If you are having trouble getting a dose of replacement hormone that provides long-term stability, then perhaps some trouble-shooting would help. Keep in mind that when we are first going onto replacement, there can be some months of tinkering with the dose. Making minor adjustments should not have an impact on your eye situation, but if you are frequently going hyper or hypo, then perhaps some of the following ideas might help:
Make sure to take your synthroid first thing in the morning, on an empty stomach, with a glass of water, and wait a minimum of half and hour or forty minutes before eating or taking other medications.
Do not take vitamin or mineral supplements until four hours after you take the synthroid.
If you are taking other medications, talk with your pharmacist about how best to space them with the synthroid.
The issue is to be as consistent as humanly possible with the taking of the replacement hormone so that a consistent dose of it is absorbed into the blood. Once it is absorbed, it does not matter what you eat or drink, but getting it into the blood in a consistent manner can make a difference.
Oh, and one of Shirley’s comments made me think of something I did while dealing with the patched eye. In order to make sure that I did not weaken one eye, I switched the patch periodically to the other eye. This might not be a helpful suggestion to you at this point, but if you have only been patching one eye, you might try forcing that patched eye to “work”, especially at times where it might not be necessary to have an absolutely perfect view of the world. I.e., I wouldn’t switch it for driving!!! I could never get the hang of driving with the eye patched anyway. Depth perception was a real problem. So I was essentially unable to drive in any kind of traffic whatsoever. It was a very long and frustrating time for me.
in reply to: Thyroid Eye Disease #1173379A bit of clarification: you may have not noticed that I mentioned that my double vision corrected during the cold phase, to the point where I only have it when I am very tired or “when I am hypothyroid.” Having wonky thyroid levels does interfere with the functioning of our bodies, including those eye muscles responsible for TED. The distinction is not so much whether synthroid is a causative agent, but whether or not we are on an appropriate dose of it to keep our thyroid levels normal.
If you are having trouble getting a dose of replacement hormone that provides long-term stability, then perhaps some trouble-shooting would help. Keep in mind that when we are first going onto replacement, there can be some months of tinkering with the dose. Making minor adjustments should not have an impact on your eye situation, but if you are frequently going hyper or hypo, then perhaps some of the following ideas might help:
Make sure to take your synthroid first thing in the morning, on an empty stomach, with a glass of water, and wait a minimum of half and hour or forty minutes before eating or taking other medications.
Do not take vitamin or mineral supplements until four hours after you take the synthroid.
If you are taking other medications, talk with your pharmacist about how best to space them with the synthroid.
The issue is to be as consistent as humanly possible with the taking of the replacement hormone so that a consistent dose of it is absorbed into the blood. Once it is absorbed, it does not matter what you eat or drink, but getting it into the blood in a consistent manner can make a difference.
in reply to: Thyroid Eye Disease #1173373The eye disease has an active phase — or “hot” phase — during which the adverse changes develop and progress. Then, it goes into a “cold” phase. During the cold phase, the symptoms of the disease abate, lessen. So there is a long-ish period of time during which changes are occuring to our eyes, either worsening, or getting better. Our opthamologist surgeons like to wait until the changes have stopped, if at all possible. That way, they know how big a fix to make. If they operate too soon, they may make changes that have to be undone by a later surgery. A case in point was my double vision, which went away almost completely during the cold phase. I only double now when I am very tired, or temporarily hypothyroid. Had I been able to cajole my surgeon into surgically fixing my double vision before all the changes had taken place, I would undoubtedly have had to undergo another surgery to undo the changes that were made too soon.
in reply to: Question about TSI result #1173343Just lost my post. aarrggh.
In an endocrine journal from the UK, the study –or abstract — title being something like Use of antithyroid hormone receptor (TRAb) in Graves, the researchers specifically stated: “TRAB did not seem to predict chance of cure, or development of GO.” Nothing equivocal about that one. But that is based on the results of a single study. And I don’t know how good it was.
Also, the study you initially cited stated that TRAb declined in the blood regardless of treatment method.
So, I am still left scratching my head. I suspect that it is still a working hypothesis (unless that’s a redundant phrase), subject to change.
in reply to: Thyroid Eye Disease #1173371Synthroid is chemically identical to our body’s own thyroxin. Changes in dose can affect whether we are euthroid, hypothyroid, or hyperthyroid, but does not cause eye changes to my knowledge.
in reply to: Question about TSI result #1173341I’m not sure what to make of this study, quite frankly. From my limited reading of studies recently on this topic, there is typically a caveat: That TRAb levels are NOT predictive of cure/remission or of development of TED. So, while this particular study seems to be showing the possibility of remission being read into it, but other studies don’t necessarily support that… We perhaps need to curb our enthusiasm.
Over the years I’ve seen studies that come out of one part of the world that cannot be duplicated in other parts of the world, so apparently geography and ethnicity can matter.
I would also point out that this study used block and replace, and the doses of methimazole that were given were HUGE (10mg four times a day). Since you are looking for a way to get pregnant sooner, rather than later, this dose of ATD might not be safe for the developing baby. You need to check this carefully with all your doctors, Mickiko.
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