[Ski]

in reply to: Graves disease in Males #1073298

Well, cured, never (technically), but as to the bare bones of my history: my symptoms began in earnest in November 1998, I was finally diagnosed in March 1999, and went through a rather frustrating treatment sequence (seems to be the norm, actually, as I think of other stories I know!). I am WELL now, levels stable, feeling good, my eyes went back almost completely to normal, on their own. I’ve never had pretibial myxedema.

The anxiety you’re feeling is absolutely typical of the stage of treatment you’re in, and I’m sorry to hear it frustrates you so, but I know it’s hard not to be frustrated. I certainly had my seemingly hopeless days. If you’re willing, you may want to explore an anti-depressant, just until your levels even out and stabilize. Anti-depressants can take up to six weeks to take full effect, so keep that in mind as you make the decision (in other words, it’s POSSIBLE that your levels will have stabilized by then, but also possible that they may not). To the extent that this frustration is proving debilitating for you, anti-depressants may provide you some welcome relief.

[Ski]

in reply to: Graves Disease and Osteoporosis #1072721

Absolutely, probably no coincidence. Hyperthyroidism leaches calcium from the bones as well as wasting our muscles. It depends on how long you were hyperthyroid, for the most part, as far as Graves’ being "responsible." There are, of course, other issues that may come into play as well (in other words, hyperthyroidism is not the only cause of osteoporosis). Once your thyroid hormone levels are under control, there should be no further damage done in terms of loss of calcium due to hyperthyroidism.

[Ski]

in reply to: urinary incontinence #1072730

I don’t know that anyone’s brought it up on the board before, but it makes perfect sense that muscle weakness could be the culprit. I’m glad to hear it’s resolving for you!

[Ski]

in reply to: diet/supplement suggestions #1072752

Once your levels are controlled and you’re rebuilding the muscle mass that was lost, this might be a good idea, but it won’t help while you’re hyperthyroid. During that time, you just have to rest your muscles, since working them can make them waste faster.

As far as diet/supplements that can help quality of life, you’ll find just about as many regimens as there are people. There’s nothing that specifically goes to solve the issues we suffer because of Graves’, mostly because it affects different people in different areas of their bodies. For the most part, hyperthyroidism will more severely affect areas of our body that were weak to begin with, since it "overworks" everything, and those areas that are weak are more likely to "break."

The diet we recommend is just a sensible, low-fat, high-fiber diet, like any nutritionist would recommend. The only food that is absolutely forbidden for patients who still have a thyroid is seaweed, because of the massive amounts of iodine. No other food has as much. Some doctors recommend a low-iodine diet, but not all doctors recommend it. You could discuss that point with your doctor.

As for supplements, again, that’s very individual. If you’re going to try something, we recommend that all of your doctors are informed about everything you’re taking ~ medicines AND supplements ~ because some can react with each other in unpredictable ways. Your pharmacist can be a good resource to tell you whether a certain supplement may react with something you’re taking already.

[Ski]

in reply to: Need encouragement:( #1072766

What beautiful posts, mamabear! I’m de-stressed just reading these lovely ideas. ” title=”Very Happy” /> And I’m giggling over kicking Graves’ Disease’s bu**!

Just one more comment for you, enough3 ~ long term ATDs ARE an option. Some doctors will advise against it, but if you can maintain your levels at very low doses, it’s nearly as good as remission. Make sure you talk it all over with your doctor, but again, the final choice is yours unless you are having life-threatening issues with the meds.

I would agree with mamabear that you need to be following your doctor’s advice on dose changes ~ don’t take it upon yourself (I’m not sure that’s what you did, but it needs to be said).

I hope you feel better SOON!!

[Ski]

in reply to: Introduction #1072758

This is a really smart step for you to take ~ investigating the other options, while you’re in no rush to decide upon one. I don’t know of many people who will know from first-hand experience the recovery differences between RAI and surgery (we usually choose one and that’s it ~ though our Jake George has experienced both, and I hope he weighs in), but each carry some level of risk, so make sure you are clear about the risks of both, take some time to think about them, talk with your daughter, and you’ll come up with one that "feels" better than the other. In truth, they both have the ability to bring her back to health, so it’s an individual choice after that.

Naturally, RAI is not invasive (don’t have to cut the skin), so in that respect you could say it’s "less severe." Surgery carries some risks of damaging the parathyroids or nicking the vocal cords, but in the hands of a very experienced surgeon who does these types of surgeries often with very low complication rates, you can minimize those risks almost to zero.

You could be in the home with her after RAI, usually ~ it’s a 6-feet-away rule for the first 48 hours, but since you’re grownups and understand what’s going on, you could still be in the same house. It’s a LITTLE disconcerting, but you can still talk to each other, watch movies together (as long as you can maintain the distance), and after the first two days, the distance rules ease up.

Let us know if your discussions with the two doctors leaves you still with questions, or if you’d like some anecdotal input from those who have been there with either treatment.

[Ski]

in reply to: Graves disease in Males #1073296

Yes Aravindh,

Gail Devers had RAI (it’s not really being "under" RAI treatment ~ the goal is to do it once and you’re done with it ~ the article is a little misleading in that regard). I remember seeing her on Oprah, urging people to "check your thyroid" when weird things happen with your body, because it’s SUCH an easy test to do and, if that’s your issue, can shorten the process to wellness. She suffered terribly before someone figured it out for her.

AND she returned to competitive sports. Truly a beacon for all of us, proof it can happen.

[Ski]

in reply to: Anyone have a doctor recommendation in Wisconsin? #1072772

Hi there,

We can’t post names of physicians here, but people may send you private messages with doctor’s names they recommend. There is a search engine in the American Thyroid Association website (we used to link to it on the main page, but that’s under construction and rather bare-bones right now, so here’s a link to that search page http://www.thyroid.org/patients/specialists.php). They dont specifically guarantee the doctors’ level of care, but they’re identified as thyroid specialists, and they’re taking new patients, so that’s a start. You may want to gather several names and call the office staff to get some overall idea of how the office is run and what they think of the doctor there. Those can be good hints for you, before taking the time to register with a new doctor’s office.

[Ski]

in reply to: Graves disease in Males #1073291

If you’re still hyperthyroid to any degree, that could account for the increase in blood pressure. Remember, this is going to be slow to resolve. Patience. The hardest thing in the world right now, I know. ” title=”Cool” />

[Ski]

in reply to: I think my son has a thyroid problem #1072808

You can always ask for a referral to a pediatric endocrinologist, just for a consultation. Take the test results to the appointment, and keep some kind of symptom log in the meantime. It may help.

If the test results did not give a "slam dunk" hyperthyroid result, six months may be okay to wait, but since you seem to lack confidence in the conclusions of the pediatrician, there’s no harm in developing a relationship with a pediatric endo in the meantime.

[Ski]

in reply to: Graves disease in Males #1073289

All of this would be great to discuss with your doctor ~ if the medication you’re taking is making you nauseous, you may want to try the other ATD (PTU) to see if the nausea goes away.

The dizziness and heat flashes may be the hyperthyroidism still showing itself, but again, take everything with you and discuss it with your doctor.

Deciding whether or not to continue with school or work is a very tough decision, and it has to be made individually, as you go through the process of treatment and see how you feel. Each of us has a very different experience through treatment, so unfortunately I can’t really tell you how it will go for you. It’s something you need to evaluate for yourself, whether you are able to continue with the schedule you’re living with. If it’s possible for you to test the waters ~ cut down on the schedule without quitting ~ you may get some valuable insight.

If your treatment goes relatively smoothly on ATDs, you may find yourself starting to feel much better in a month or two, but if you have complications (such as side effects), that may set you back. As I said, it’s very much an individual thing. Your doctor may have some information for you, based on their experience treating Graves’ patients and your current status. Schedule a good, long talk with your doctor and try to either take notes or bring a friend with you (or both!) so you have a better source of recollection after the appointment than your own memory. Right now, your memory might not be so reliable.

[Ski]

in reply to: side effects #1072779

You may need to document your disease and request accommodations from your employer, if you are already being "talked to" at this early phase of your treatment. You can qualify for ADA accommodations, and use them only when you need (when things get difficult ~ not as a standard practice), and it can protect your job. You can remove the accommodations when you are sure that you’re feeling completely well.

This can be a slow process, healing ~ it may go quickly for you, it may not, but you should be prepared in case you need a little bit of downtime for yourself.

[Ski]

in reply to: Newly diagnosed with GD #1072792

Hi Jo,

We’re so glad you found us! I must admit, it’s pretty rare to read a "newly diagnosed" post that’s as cheery. ” title=”Very Happy” /> We’ll be here for you, feel free to ask any questions you have as you go through this process.

[Ski]

in reply to: I think my son has a thyroid problem #1072804

Well, the question about what is going on with your son is FAR out of our realm to answer, but I do feel for you, going through this! Sounds like at least you have a doctor who is exploring every possibility, and rechecking as necessary. If you don’t feel confident that you are getting helpful answers, there’s no harm in getting a second opinion, but I would take copies of all the test results done so far, if only to avoid having your poor little boy stuck with even more needles to find out the same things.

Thyroid conditions act similarly to MANY other conditions, which is precisely why it can be difficult to get a successful thyroid disease diagnosis quickly, but the doctor has tested the thyroid hormone levels already, and has promised to do it again, and is checking for other conditions at the same time, so hopefully a cohesive picture will emerge soon.

Even thyroid hormone levels that fluctuate dramatically can signal a problem (except T3, since that is supposed to fluctuate often), so I would suggest that you make sure you have copies of all the test results for your son, and have a really good talk with the doctor to ask what their feeling is, as well as what they still need to know before they can make a conclusive diagnosis. Sometimes a doctor doesn’t want to let us in on all the possibilities, because we’ll just worry more, and it may be unnecessary. If you come away from that discussion feeling dissatisfied, look up another doctor and have another talk.

[Ski]

in reply to: Bloods still seemingly awful and feeling awful again. #1072811

Oh, I beg to differ, my friend! ” title=”Cool” /> At least you’re talking to people who understand what you’re going through, and we won’t judge you for what you say and feel. We know how tough this is, truly we do. We’ll prop you up when you’re feeling this way ~ I know it seems like forever until you feel better, but try to remember that even a long period of time now is going to fade away into your past eventually. Think back to your youth ~ something that lasted a year then seemed like it took "forever," yet now, in hindsight, it’s nothing.

My husband broke his knee in THE most horrible way, back in 2003, and I remember him feeling desperately sad, disabled, less than ~ from the very start, I tried to get his mind thinking further in the future. I’d tell him to remember, in a year, this will just be a speed bump in your past. Now we’re more than five years out, and it has become just that. He said it helped to imagine himself into the future, feeling well and looking back. It doesn’t get you out of the circumstance, but it helps to remind you that there IS an end point.

Aim for anything you can find that gives you hope. Your family is better off with you than without you, I guarantee it.

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