Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • Ski
    Participant
    Post count: 1569

    We have heard that, over time, the Graves’ antibodies appear to end up destroying the thyroid, but not for everyone. Some patients who keep their thyroids long term (either through longterm remission or longterm use of ATDs) do find that, after years go by, their thyroid stops functioning at some point during their lives. Not 100% of these patients experience this phenomenon, as far as I know.

    There are several problems with presuming you can avoid treatment and just wait for that to happen. First, it happens in an unpredictable manner, so you are consistently imbalanced. Second, you remain hyperthyroid, which continues to waste your bone and muscle tissue, and can end up creating permanent issues in several ways ~ first and most importantly, your heart is a muscle, so you don’t want any of that muscle tissue weakening or wasting away. Third, you risk thyroid storm, which is an ER event, can be fatal, and can also create another host of lifelong problems, if you survive it.

    There are so many risks to remaining hyperthyroid that I truly cannot list them all here. Thyroid hormone is the "fuel" that makes all of our cells function correctly, so if there’s too much, there’s too much everywhere, and it’s impossible to know how exactly your body will respond to this imbalance, but severe damage could occur that would not be correctable, and it could happen in any organ, in any tissue.

    While none of our options are perfect, they all return us to health, and all are FAR preferable to remaining hyperthyroid. In the days before we had treatment options, before surgery was safe, before RAI was known, before ATDs had been developed, fully 50% of Graves’ patients found the disease to be fatal. Those are horrible odds.

    Remember that for the most part, we see patients here who are either newly diagnosed, or having trouble being regulated. The vast majority of patients go on to be successfully regulated and don’t even consider Graves’ to be an issue in their lives, and for that reason, they don’t visit here. You do see some people who are newly treated (or longterm regulated) who drop in and announce their well being, and you may want to look for those, they are very uplifting and I’m glad they take the time. They usually just check in once, and then go back to their lives, so those posts will not see a great deal of activity, but they’re worth finding, for your peace of mind.

    RAI and thyroidectomy are the next best choices for a patient who cannot take ATDs, and you can get lots of advice here to make sure you have the best possible outcome with either. Bottom line: remaining hyperthyroid is not an option.

    jrusin70
    Participant
    Post count: 17

    HI, I have graves but at some point won’t by thyriod burn it self out and then I would become hypo? I am allergic to ptu and mez. After reading these posts I don’t want to take RAI and dont want surgery if possible. If I wait a few months do you think my thyriod would burn yourself out? Thanks

    jrusin70
    Participant
    Post count: 17

    Thank you for your response. My concern is that my levels have improved since my last blood test two months ago. I’m on a beta blocker that seems to be working well and I’m doing accupuncture. I would like to wait until January to see if my levels go down more -if not I will do the surgery. I just hate to do something so perminate if there is a chanse it might be normal again–atleast for while.

    Ski
    Participant
    Post count: 1569

    If your levels are normal, and stable, then that’s fine. Just so you know, beta blockers don’t do anything to affect the thyroid hormone levels, they just alleviate some of the symptoms (anxiety, tremors) and protect your heart from unusual beats (arrhythmias) that can happen along with hyperthyroidism, and can be dangerous.

    The antibodies wax and wane for no well-understood reason, so it is possible for your levels to normalize on their own (without any intervention at all). I understand completely your impulse to keep your thyroid if at all possible. Again, if your levels come into the normal range, you feel well, and they stabilize, that’s the ultimate goal, so if you achieve it through spontaneous remission, that’s great! If your levels fluctuate much, keep in mind that it is nearly as damaging to your body to have constant fluctuations as it is to be either hyperthyroid or hypothyroid.

    Keep your eyes open for symptoms that the hyperthyroidism may be returning, because if it does, the sooner you catch it and correct it, the better.

    Kimberly
    Keymaster
    Post count: 4294

    Just wanted to add that you *will* hear the term “thyroid burnout” thrown around quite a bit in medical circles. However, at the 2009 conference, I heard one doc make a passing comment that the mechanism behind this might be misunderstood. While some patients do eventually see a reduction in thyroid function, there is another theory that our antibodies – which originally acted to *stimulate* thyroid production – may eventually start to act in a *blocking* capacity. But it’s not well understood whether these are actually different antibodies…or if they are the same antibodies, but they start behaving in a different way. (Perhaps by binding to the TSH receptors on our thyroid gland in a way that *prevents* thyroid hormone from being released).

    But regardless of what causes the reduced thyroid function, this is generally something that happens *years* down the road. Totally agree with everything that Ski said regarding the importance of getting treatment *now* if your levels are in the hypER range.

    Even if you levels are normal now, I would encourage you to be vigilant about watching for a return of hypER symptoms. Occasionally, Graves’ patients can end up on a bit of a hypER/hypo rollercoaster before they go into a full-blown hypERthyroid state.

    As for the allergy issues, some patients who experience a *mild* reaction, such as itching/hives, may be able to continue the meds by taking an antihistamine such as Benadryl. But this is a decision for you and your doctor to make. If you had a severe reaction, you absolutely, positively, do NOT want to take a risk and go down that path again!

Viewing 5 posts - 1 through 5 (of 5 total)
  • You must be logged in to reply to this topic.