[Ski]

in reply to: A very happy update after RAI #1061816

Thanks so much for posting your good news!! Glad you’re feeling better. ” title=”Very Happy” />

[Ski]

in reply to: RAI scheduled May 18 – Should I? #1061847

Oh also ~ when it comes to post-RAI restrictions, have a talk with your doctor about the basis for their instructions, and ask all the questions that come up for you when you read others’ stories, and I’m sure the two of you can come to a good understanding. Older restrictions were FAR more severe, because always the thought is to be as safe as possible, and over time they’ve begun to understand more about the overall process, so they’ve reduced the restrictions to a point where they are STILL safe, but less restrictive than before.

[Ski]

in reply to: RAI scheduled May 18 – Should I? #1061846

All I meant by "guessing" after RAI is that there is a period of time when the thyroid continues to function, at ever decreasing levels, as the RAI destroys it. Naturally, when you have surgery, the tissue is out, the gland is not functioning. With RAI, there’s a waiting period ~ and sometimes the dose that’s given is not sufficient to fully destroy the gland, though that’s rarer and rarer these days, because outcomes have been so much better when patients are given a fully ablative dose.

[Ski]

in reply to: This is ruining our Marriage #1061910

Being hyperthyroid is absolutely horrible, GenevieveB, and unfortunately it isn’t necessarily something we can objectively evaluate about ourselves, so we most often recommend that all patients refrain from making big life decisions while in the throes of hyperthyroidism. Of course, that’s only good advice for someone who agrees the changes are caused by GD, which obviously your loved one does not, so that makes it only more frustrating for you.

I don’t know what to tell you, exactly, but the fact that you’re here speaks volumes about your love for this individual, and so I would just urge you to keep your distance right now, but please don’t give up. It’s quite possible that, following successful treatment, he’ll return to himself and come crawling back, realizing fully the bad decisions he’s making right now. RIGHT NOW he is not likely to listen (as you’ve found), and things may get far more crazy before they stabilize. Just forewarning.

Keep learning about GD yourself, because it will help in the long run if everything works out. I’m so sorry you’re in this position. Many times I think our loved ones suffer more than we do, because watching may actually be worse than living it, in some circumstances.

[Ski]

in reply to: Chronic muscle pain and weakness #1061828

In the absence of any new, dramatic shift in your thyroid hormone levels, it would seem odd if your new symptoms were connected to Graves’, but I agree with Kimberly, best to get someone to check it out. People who have been hyperthyroid for a long time can experience the kind of pain you’re experiencing, and people who are hypothyroid can have severe muscle cramping, but again, either requires your levels to be out of whack. Have you had those tested recently? I realize that’s another expense, but it’s critical that you maintain normal, stable thyroid hormone levels in order to feel well. You’ve seen the need to change your dose before, so perhaps it’s time to investigate that again.

In the event that your thyroid hormone levels are normal, and stable, then there’s a chance you’re experiencing symptoms from some new condition, which is best evaluated by a professional so you proceed correctly to resolve the issue.

The only thing that comes to my mind is the potential for fibromyalgia ~ I believe the latest conventional wisdom puts it in the category of an autoimmune disease, and we are slightly more likely to present with another autoimmune disease, once we have one.

[Ski]

in reply to: Nobody Cares #1061836

Hi and welcome! I am so sorry you’ve had such a tough road, but glad you found us! I can’t answer in much length right this minute, but wanted you to know that there are answers here, and there is hope, don’t give up! You can do searches for posts that speak of your issues, and you will find a lot of good information. More later, welcome again!

[Ski]

in reply to: RAI scheduled May 18 – Should I? #1061841

The fact is that most of your problems have been due to the imbalances you’ve suffered, and your inability to find normal, stable levels. Your body literally cannot heal until you are stable. RAI can at least remove the uncertainty of antibody action on your thyroid, since the thyroid cannot react to the antibodies if it no longer exists. Once your thyroid completely dies and you go hypothyroid, you take thyroid replacement hormone and come back into the normal range, so you don’t go hypo and STAY hypo, you go hypo (which is the goal) and then successful management of thyroid replacement hormone can bring you finally into normal, stable territory, at which point all the problems in your body can BEGIN to finally heal.

It does take a little time, but you’re feeling better and getting closer to normal all the time, and the capricious nature of the antibodies can no longer affect your outcome. Also, without insurance, replacement hormone is not very expensive, so it’s not something that you would find a particular "burden" in order to remain healthy. Just my two cents.

Since meds haven’t worked well for you, removal would seem to make sense, but you do have a second option, which is surgery, if you’d prefer to go that way. The advantage to surgery is that you know precisely when you no longer have a thyroid, rather than guessing after RAI, but if you talk with your doctor ahead of time and vocalize your desire to destroy the thyroid completely, they’ll likely compute a large enough dose to make that happen. Keep in mind that even a "large" RAI dose for a Graves’ Disease patient is still very small when you put it in perspective ~ thyroid cancer patients take RAI doses 10 to 20 TIMES what we take, and even that is considered safe.

Good luck to you, and I hope you find normal, stable levels soon! The roller coaster you’ve been on can’t have been any fun…

[Ski]

in reply to: Not much has changed #1061866

Just one question ~ are those T4 levels within the normal range for your lab? TSH lags behind T4 levels by a few weeks, giving a result that comes from kind of a "running average" of T4 levels, and after a long period of hyperthyroidism, it can be extremely slow to rise. If that T4 level is normal for your lab, you’re probably very close to where you want to be.

When I had my RAI, I was told to wait at least six months after the RAI to decide whether it had been successful or not. It continues to work for that period of time, and you also have the effect of the antibodies on the thyroid, which "burn out" thyroid cells all by themselves, so I would try to give it a little more time, if it were me. I understand the frustration completely ~ and bottom line, if you want to pursue surgery, you may want to start the process now so that you can go forward with it at the six-month mark if you haven’t gone hypo from the RAI yet by then.

Talk frankly with your doctor about your feelings ~ they should be very helpful. They need to know how you’re feeling and what you are thinking.

[Ski]

in reply to: vitamin suggestions #1061951

That’s a good question for your doctor ~ it depends on the vitamin, I believe. They’re the experts ~ there may be one "vitamin/mineral" panel, but they can tell you for sure.

[Ski]

in reply to: Alternative options? #1061936

Anti-thyroid drugs (ATDs) are usually taken for at least a year (up to two years) before going off them to attempt remission. That is preferable because it gives the body plenty of time to normalize before stopping the meds, and it typically only requires a very small dose to maintain, after the initial period of narrowing in on the right dose to keep levels normal.

Remission, by the way, is defined as a period of time longer than one year when the patient takes no medication at all, and levels remain stable. Some people go off the meds and enjoy a few months’ time before levels start to elevate again, so that would not be defined as a remission at all. Remission rates are actually fairly low (40% on the first try, lower figures for each successive attempt), but MOST patients respond well to ATDs in terms of lowering thyroid hormone levels. The newest conventional wisdom permits a patient to remain on a very low dose of ATD for the long term, instead of continuing to cycle through starting/stopping and attempting remission, as long as they are not experiencing any of the serious (very rare) side effects of ATDs.

After RAI (or surgery), the goal is to have no remaining functional thyroid tissue, so yes, you need to take replacement thyroid hormone for life. The difference between ATDs long term and thyroid hormone replacement long term is that ATDs are a foreign chemical substance that works on the processes your body uses to either make thyroid hormone or release thyroid hormone, and can, over time, cause damage to the liver and other organs that process the chemicals (as patients get older, their risk of this can increase). Thyroid hormone replacement is chemically identical to the thyroid hormone your body produces, so there is no risk of liver damage. The only problem with replacement hormone is if you take too much or too little, because then your levels will not be right. Low doses of ATDs have less chemical risk than high doses, that’s true ~ something to make note of for your pro/con list, as you go through your decision process.

Replacement hormone is not very expensive, so even if you lose insurance coverage, a patient can usually bear the cost on their own, which is something else to consider.

[Ski]

in reply to: New and have many questions #1062175

Glad we can help!

The T4 and TSH are the two sides of the thyroid hormone "seesaw," if you will. T4 is the inactive thyroid hormone that travels in your bloodstream and is converted to T3 whenever your body needs fuel someplace. TSH is the Thyroid Stimulating Hormone that is released from the pituitary gland in response to the T4 it senses in the bloodstream. In other words, if the pituitary senses there is not enough T4 in the bloodstream, the levels will rise in order to instruct the thyroid to release more hormone. If it senses there is too much, the TSH level will drop in order to instruct the thyroid to slow down on thyroid hormone release. For that reason, the two have an inverse relationship ~ when a typical patient is hyperthyroid, the T4 levels will be above the normal range, and the TSH levels will fall below the normal range. After a lengthy period of hyperthyroidism, sometimes the pituitary takes a while to "wake up and smell the lack of thyroid hormone," so it can remain suppressed even after T4 levels fall into the normal range and below. For that reason, it’s good to see BOTH on a lab test, so you and your doctor can see more clearly the reality of thyroid hormone in your bloodstream. After you’ve been through a period of adjustment, replacement, or treatment and have arrived at a stable level, the TSH level is the best possible measure of how you’re doing, but during this middle period of time, it can be helpful to watch T4 levels also.

Conventional wisdom these days says that it is always better to go for complete destruction of the thyroid with RAI, because any thyroid tissue remaining active can still be affected by the Graves’ antibodies and forced to overproduce thyroid hormone. Even if it’s just from a small portion of your thyroid, the volatility can make it very difficult to feel truly healthy again. In addition to that, cells that are completely destroyed are gone. Cells that are just badly damaged can start to act truly wonky, creating even further problems. Better to have an RAI that takes the whole thing out, because trying to chase normal when you’ve got thyroid tissue that isn’t acting in a predictable way can be very frustrating.

[Ski]

in reply to: New here. My journey with Graves #1062209

I had a second RAI, but it took me 2 years to admit I needed it. My T4 levels dropped, but my TSH just never rose. My doctor tried a "jump start" with methimazole, but then told me he intended to have me stay on it for the (then) recommended 2-year period before allowing me to stop taking it, which I didn’t want to do, so he let me go off the methimazole and see what happened to my levels. They returned to that "normal T4, suppressed TSH" and so I agreed to do another RAI. In the meantime, I was not feeling very badly, or at least I thought I wasn’t. Once I had the second RAI and my levels truly normalized, I could see the difference. At that point it’s kind of subtle.

The doctor who gave me my first RAI told me that it does most of its work in the first 6 weeks, but continues to work on the thyroid for up to 6 months, so that was my first benchmark for deciding whether or not to do a second treatment. After that, just the period of time trying this and that, and hoping that the natural progression of Graves’ would finally do in my thyroid completely, took long enough that it was almost 2 years later before I went in for the second treatment.

If your thyroid was not completely destroyed by the RAI in the first six weeks, it could bounce back & forth until it’s gone completely. That’s why doctors have pretty much agreed that there’s no such thing as "just enough" RAI to leave a patient at stable thyroid hormone levels ~ no matter what amount of thyroid tissue remains, it can be affected by the antibodies and forced to overproduce. Even if that doesn’t make you hyperthyroid, the volatility is not good for you. It may be premature to decide you need to do the treatment again, though. Try and keep a symptom diary to bring to your doctor — it can help you be on the "same page" with your current status.

[Ski]

in reply to: New and have many questions #1062173

Hi Susan,

It’s really hard to say when any patient will go hypothyroid, but for the most part it doesn’t happen this quickly. The excess thyroid hormone that was in your bloodstream on the day of RAI may take six weeks to get out of your bloodstream, so typically our doctors will start monitoring carefully around that time. It is very normal to go through a period where you feel up/down/all around, because of all the chemical changes in your bloodstream just after RAI. In addition to that, there can be a period of a few days, right around the two-week mark, when you feel even more hyperthyroid, because the thyroid cells that are being destroyed are also "dumping" the thyroid hormone they’d been storing, so until there are fewer cells being destroyed (a couple of days, as I mentioned), you can experience a brief period of a kind of super-hyper. Not every patient feels that (I didn’t), but it’s good to know it’s possible.

You should know that symptoms of hyperthyroidism and hypothyroidism overlap, to some degree, so a few of them belong to BOTH sides. For that reason, the only reliable way to know whether you’ve gone hypo is to get blood tests done. I thought I was hypo about a million times, and it must’ve been because I felt hypo compared to the hyper feelings of before, but in any event, the lab tests proved I was mistaken. (Oh, one thing though: make sure to ask for T4 levels as well as TSH — early on in the process, you can learn more from having both, because TSH can remain suppressed for a while after T4 drops into hypo territory.) Keep a long list of potential hypothyroid symptoms, and log your own experience with those symptoms, including how severely you are feeling them. When you can point to 4 or 5 classic hypothyroid symptoms that you are experiencing with high frequency, it is likely time to get blood tests run. It can be a relief to have an open order at the lab, so you can go whenever you feel it may be appropriate, but do be careful, as it can get expensive, and the doctor may revoke the privilege if you abuse it.

Once you’ve been confirmed hypo, it’s a good idea to keep the symptom diary going, because it may help you dial in your very best normal point within the normal range. Doctors are much more swayed by that type of data than by our vague statements that "I’m always tired." If they can see you took naps every day for a week on top of sleeping through long nights, they listen more and are willing to participate in the process to find your best normal.

I’m glad you’re feeling better, I hope this helps!

[Ski]

in reply to: Alternative options? #1061932

If surgery is the option you prefer, then yes, I would find a doctor who supports that decision, IF the doctor you have now actually has some type of control over your treatment choice. It may be that your doctor doesn’t recommend it, wouldn’t prefer it, but bottom line, you go to a different doctor for surgery, and this one can’t tell you not to go see a surgeon or pursue your own preferred choice. I would make clear to your doctor that surgery IS what you want, that you WILL pursue it, and you will do it through a different physician if he won’t support it. That should wake him up, and if it turns out he absolutely will not support your decision (it’d be odd, but it does happen), then yes, find a different doctor. That’s the one way GD patients are lucky ~ we HAVE choices for treatment, and barring any unusual restrictions for one or another, we get to evaluate all three and choose any one of them to get us healthy again.

[Ski]

in reply to: vitamin suggestions #1061946

Vitamin deficiencies/supplements are very individual ~ there really aren’t any that we can point to as specifically good for Graves’ patients or thyroid patients. It’s best to know that you NEED vitamins/supplements before you start taking them, and then take only what you really need (not necessarily 20 vitamins in a pill, for instance, just the ONE vitamin you need).

The most important thing is to make sure your doctor knows everything you are taking regularly, for several reasons. Supplements can interact with your prescriptions in unpredictable ways, and sometimes just adjusting the time of day they are taken can spell the difference between success and failure on all fronts. In addition to that, there are some vitamins/supplements that are toxic in large amounts if we don’t really have a need for them, and others have limited routes to leave the body once we have taken them.

Your pharmacist may be a very good guide in terms of interactions between prescriptions and supplements, so use them as a resource (it is their specialty), but also make sure your doctor is aware of what you are taking. If it just takes an additional tic on the lab form to ensure you’re not overdosing on anything, it’s worth it, and they wouldn’t know if you didn’t tell them.

[Author]

Posts