[Ski]

in reply to: Pounding Heart #1074588

Hi vathauer,

Your Mom is doing the right thing ~ the thyroid meds may take a few weeks to effectively bring down her thyroid hormone levels, and the atenolol is great for bringing down her heart rate in the meantime. Still, you may want to touch base with her doctor to see if they believe that more atenolol may be in order. Sometimes the doctors presume they know the proper dose, but it takes caring family members like you to give them the finer details. It’ll be temporary, because as her thyroid hormone levels normalize she’ll be able to wean off the atenolol. It’s possible that the atenolol is enough for her, but it just takes some time to be as effective as possible ~ again, the best thing to do is touch base with her doctor to see what they think. You’re pretty worried, so I’d do whatever you can to speak to the doctor on call if you can. It should be as easy as a phone call ~ if they believe that she should be taking more, they may be able to authorize you to give her an additional pill of what she’s got right now.

[Ski]

in reply to: Finally , a normal blood test #1074593

Oh I see now, thanks! I wish you luck with the surgery, I’m glad you are progressing! Everyone I’ve spoken with who had the surgery says good things about their result. I wish the same for you. ” title=”Very Happy” />

[Ski]

in reply to: Muscle Loss in Legs & More #1074815

A physical therapist may be a good place to begin ~ they can give you an idea of where you stand right now. We have the idea that we’re just the same, and all we need is a little workout, but in fact the truth can be FAR different. It’s important to use the right types of exercises and, as the last post points out, NOT to overdo.

In addition, no strenuous exercise at all until the doctor allows it. While we are hyperthyroid, our entire body is out of whack, and the electrical impulses to the heart can be erratic. Exercising can make those erratic impulses into a life threatening event. So pay attention to doctor’s instructions.

[Ski]

in reply to: Finally , a normal blood test #1074591

Hi crazymom,

I’m a little bit confused ~ if you’ve got a normal blood test now, why pursue further treatment? Why not see if you stay at this level?

[Ski]

in reply to: Success rates for treatments #1074621

Hi Lynne,

First things first: hyperthyroidism is much more dangerous than ANY of the treatments. You simply must get your thyroid hormone levels under control.

It’s possible that being hyperthyroid is making it difficult for you to concentrate. You might want to start with ATDs, just to give your body some rest and begin your return to normal thyroid hormone levels, and then it will be easier to evaluate the treatments for yourself.

In truth, there are MANY people who take ATDs, go into remission, and never think another thing of it. There are MANY people who have RAI, find a good level of replacement hormone, and never think another thing of it. There are just as many who are thrilled with their surgical results.

We don’t see those people here. Remember that only people who are having trouble will seek help.

The only thing that counts, in the end, is what YOU are comfortable with. It is no fun to be driven into a certain course of treatment without any choice. We are lucky in that we HAVE choices.

You’ll get there. Do your research, and decide upon something, even if it’s just starting with ATDs because that’s the only option you can reverse ~ getting back to normal will be miraculous, I promise.

[Ski]

in reply to: finding it hard to cope #1074685

Yoga and other, similar activities will definitely help to center a patient, to alleviate some symptoms, and to give us some sense of control and peace. They will NOT affect our thyroid hormone levels, but each and every thing we do that sends us in a positive direction is a good thing, as long as we are also treating the thyroid hormone levels.

We find that the things that work FOR YOU are the best. In other words, don’t force yourself to do yoga because someone else gets a lot of benefit out of it, if you do not. Do the types of things that give you satisfaction, that give you peace. It’s different for all of us.

Take heart, you will get through this! Be patient, forgive yourself, and do everything you can to alleviate your symptoms as well as treat your condition.

[Ski]

in reply to: Muscle Loss in Legs & More #1074811

Just one quick hint and a thought to share.

First the hint: when you can’t open jars, get out your playtex dishwashing glove and try again (with the rubber side ~ I have one with a "scrubber palm" that wouldn’t be effective) ~ it’s magical, the grip it gives you!! ” title=”Very Happy” />

And a thought: Please don’t wish for the weight loss associated with Graves’. The weight loss we experience is VERY bad for us, since it is muscle mass we lose. After the muscle mass is gone, it’s like we’re toddlers learning to walk ~ our muscles are mushy and weak, and it takes FOREVER to get them back where they ought to be. Some weight gain is as a result of losing the muscle mass, since muscle eats calories and allows us to eat more and stay at the same weight. When we lose the muscle mass, our body can gain weight because the muscle is no longer absorbing the calories and so, eating the same food, we gain.

[Ski]

in reply to: New here #1074742

Hi Tara,

I’m sorry you have to go through this, but I’m also glad you found us. This is definitely not an easy road, but you CAN get through it. Please resist all temptations to quit the meds ~ the meds are NOT what is making you sick, it’s the hyperthyroidism and the amount of time you spent being hyperthyroid. Discontinuing treatment will only make you sicker and increase your risk for all kinds of problems (bone density issues, heart problems, for example).

The MOST important goal is normal thyroid hormone levels. Be a pit bull about finding your normal. Try and be patient, because this is not something we can accomplish quickly. But we are all evidence that you’ll get there. Promise.

Go easy on yourself for now. Do only what you must do, and besides that, do only the things that give you LOTS back, lots of joy, satisfaction, fulfillment. Ditch those things that drain you.

[Ski]

in reply to: Touch #1074953

Hi JParsons,

I’m so sorry to hear that your relationship is in such a desperate situation ~ if there is any way at all to get some counseling together, it may help. Your wife needs to understand that she is suffering a chemical imbalance right now, and the things she’s thinking may not be entirely rational. Still, that’s impossible for YOU to say to her, given the strains in your relationship. We typically advise that patients take time for themselves as a priority, so if you can do anything to promote that for her, give her time to get out and do things that make her feel fulfilled, that give her joy, her opinion of you (and treatment of you) may improve.

This is a REALLY tough time, and I feel for you both. Try to forgive all you can. I remember my "rages," and they were not pretty, OR rational. It’s a frustrating feeling ~ I used to liken it to a train overtaking me. I am SUCH a calm, easygoing person typically, but I’d be going along just fine one day and then something would happen and the train would run me over and next thing you know I’d be a spitting, yelling, shrieking shrew. Those who know me now would say they can’t believe it. But it’s VERY true.

Hang in. If you tread carefully now, the two of you may end up much stronger. Best of luck. Please let us know how it’s going.

[Ski]

in reply to: Question about RAI #1074726

Hi Karen,

I did have two RAI doses, and finally got healthy as a result. The only thing I would point out is that your second dose will likely be much higher than your first, but not for the reason you may think. The first RAI, even though it (apparently) did not completely destroy your thyroid, still did some damage to it. The RAI dose is calculated partly on your uptake, which is a percentage figure they get when they do the uptake/scan. (In the scan, which I’m sure you recall, they give you a measured dose of a non-destructive RAI isotope and then measure, 24 hours later, how much of it remained in your thyroid.) The RAI dose, when we are first diagnosed, is typically calculated from a very high percentage of uptake, because that goes with active Graves’. What they try to do is determine a figure that they want to eventually stay in your thyroid, and work backward to that. You can see that if you want 5 millicuries to remain in the thyroid, and you are at an 80% uptake, then you must take around 6.5 millicuries to allow for the 20% that will be flushed from your system. If your uptake is more like 50%, then you must take 10 millicuries to end up with 5 millicuries in your thyroid. Your uptake at this point is likely much lower than it was when you were first treated, so your RAI dose may be higher, but the effective dose (the amount that remains in your body after 2 days) is typically similar to your first dose.

If you’re truly uncomfortable with the idea of a second RAI, you can still choose ATDs or surgery at this point. Whatever it takes to get your levels to normal, that’s the goal. The means are entirely up to you (with certain rational restrictions, such as not doing surgery on a hemophiliac).

[Ski]

in reply to: A good Grave’s diet? #1074997

Just a quick comment on the last post here ~ I am not sure where those restrictions came from, but I believe they typically are intended for people whose thyroid is functioning, not for those of us who no longer have a thyroid. In addition, I have seen no medical studies proving that those substances cause us trouble ~ typically it’s opinion. I have caffeine every day and feel fine, and I love nuts, garlic, broccoli, cauliflower and spinach and when I have them, no problems with my levels.

Antihistamines can cause problems for any of us, but mostly for those who still have a thyroid. Even though I am on replacement hormone, though, I do notice a difference when I take them, so I avoid them.

[Ski]

in reply to: Night-time eye closure bandage/mask #1074872

I haven’t had to deal with this, but I remember some correspondence about this ~ there may be a thread in the old bulletin posts. In any event, I think the advice I’ve seen is to use specific tape ~ sticky enough to hold, but not enough to pull when you remove it. I can’t say I recall exactly which it refers to, but I believe it’s paper tape. In addition to that, I believe it may not be completely necessary to have your eyes shut by the mask, but more importantly, keeps air from getting to the portions of the eye that are exposed. I think the configuration I recall is gel in the eyes, vaseline around the outside of the eye area, saran wrap on that, taped with paper tape, and then a sleep mask. Sounds like a lot of work, but if it keeps your corneas from being damaged, it’s definitely worth it.

I hope that helps a little…

[Ski]

in reply to: sleep disturbances; restless leg syndrome and Graves #1074867

Hi there,

I’m going to have to be brief — accessing theinternet in a rather bizarre way and it’s arduous. I just wanted to say that you don’t have to think of TED as a progressive disease — if you have it mildly now, it’s quite likely that it will continue just as mildly as it is now. The typical course is that it has a period of activity (1-3 years, longer for smokers), then a period of stability, then a period of improvement. I am ten years out from my first symptom and my eyes look mostly the way they did before the whole thing began.

As far as restless leg — I don’t know whether it’s exactly that you’re experiencing, but it should get better as your levels improve.

Let us know how it’s going!

[Ski]

in reply to: Alcohol and Graves? #1074875

As far as I know, that wouldn’t preclude having any alcohol. Enjoy your holidays. ” title=”Very Happy” />

[Ski]

in reply to: 23 and just diagnosed with Graves Disease #1075176

Hi Kelanie,
Your question is far outside the ability of anyone here to answer ~ best asked of your cardiologist.

[Author]

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