2 RAI rounds…now TT…Help…

Hi, Paula, and welcome to the Board.

First off, I am really sorry you have had such a horrid time. Having wonky thyroid levels is bad enough, but when you get the pretibial myxedema AND the thyroid acropachy as well, you have been dealing with a lot of issues all at once.

Obviously, nobody here is going to be able to tell you for sure why you haven’t been able to get to a sustained level of replacement hormone. I will make some comments about "possibilities," and try to give you some insights — which you may already know since you have been doing research all these years. Nevertheless, sometimes something new might occur.

Typically, getting balanced out on hormone replacement requires a major amount of patience. Getting to the right level of replacement does NOT make you feel instantly good again. Some folks expect the pill to be a bit magical that way — i.e. if I am taking the right amount, why don’t I feel well? So, if I don’t feel well, I must not be taking the right amount. This type of thinking can actually slow down your recovery. But more about that later. The thing is that having wonky levels of thyroid hormone throws off all of the body’s cell systems. Some damage can occur (muscles for example: we lose muscle mass and it takes time AT normal levels of hormone for muscle to return), so we can feel weak/tired even though we’re at the proper level if our bodies haven’t had enough time to HEAL.

So, how can it sometimes throw off our recovery if we expect too much, too soon? A real problem develops if we get our blood tests too frequently. The TSH — which is what most of our doctors look at to see if we are at the right level of replacement — can take a long time to properly register our hormone levels. It’s a "running average" of sorts, so until you allow weeks to pass (typically a minimum of six weeks, but three months is better), you may not get the proper Final Answer. If you get tested too soon, and the full effects of a dose change are not reflected in the test, you could make a correction that would make things worse, not better — I think it’s a bit like putting yourself ona hormonal roller coaster.

Another problem can result from taking other medications/vitamin supplements/supplements too close to the time you take your replacement hormone in the morning. You should take the replacement on an empty stomach, first thing in the morning, with a glass of water, and then wait AT LEAST a half hour before having breakfast. You should not take any vitamins or other supplements for about FOUR hours. There are minerals and elements in food and vitamins and supplements that can block the absorption of your replacement hormone, so consistently doing one thing (ie taking it first thing in the morning, etc.) can assure you that you are not, inadvertantly causing fluctuations in the amount of replacement that is absorbed. The main issue is being completely consistent about what you are taking when, and what you are eating, and how soon after, etc. The easiest way to accomplish the consistency is to take the replacement hormone all by itself, on an empty stomach, first thing in the morning and give it time to start being absorbed into the blood.

I hope these suggestions help a bit. They may be totally unrelated. But I do hope you are feeling better soon.

If your doctor believes that your inability to find a stable level of thyroid hormone is due to remaining thyroid tissue that is fully functioning, I would just hope that you’d have another uptake scan to make sure that’s true before having surgery. If it’s true and you do have remaining thyroid tissue, then any antibodies in your bloodstream could mess with your thyroid hormone levels, and removing the thyroid would take that possibility away. If it’s not, then there may be something else going on, and that should be investigated. An uptake/scan should give you confirmation at least, which would be comforting prior to having surgery.

As far as the antibody levels, now that is probably the holy grail of Graves’ research ~ why, why why do they rise and fall, and how can we control that? As far as I know, we haven’t got that information yet. We do know that when the antibodies are present, we can sometimes keep them "quieter" if our system is kept in a quiet state overall. In other words, when we have violent reactions to things in our life, we stimulate the immune system, which usually jumps into action by activating the antibodies we’ve developed against disease during our lives. In a normal person, that’s like rallying all the troops to figure out what’s going on and fix it. When we’ve developed antibodies that attack our own healthy tissues, those are also activated, and that increases our worst autoimmune symptoms. Unfortunately, we can’t always control what’s going on around us, and violent reactions are unavoidable, at least to certain situations. To the extent we can, we need to hold ourselves steady, but also allow ourselves to be human, and just understand the consequences. So when we’ve had a very tough day, or really bad news, we might want to be extra gentle on ourselves that night ~ limit other activities and things that will take more resources. But as far as the levels of antibodies and controlling their rise and fall, the science is still lacking. They’re working on it, I can tell you that, but in the meantime, we just need to manage what we can. I do hope you find some success in your treatment soon, and I’m so glad you found us. We’re having a conference in San Diego in a couple of weeks ~ it’d be great if you are able to join us!

hi everyone good wishes to all.
Regarding ted and acropachy there is a receptor in the blood (sorry cant remember what its called)but the endo can test for it. This receptor causes all the swelling with both ted and acropachy. And when it comes to acropachy its not really swelling, It is new soft tissue and bone growth. The bone growth will show up on x-ray. And as of now the docs really dont know how to treat this. But there is always hope.
Feel well
wendy