[Ski]

in reply to: Levothyroxine side effects? #1181653

Hi Katie,

It sounds like it’d be helpful for you to get some blood levels — thyroid hormone as well as the other things you talk about. Did your primary care physician have labs done? If not, you may want to check with your endo just so you can have those labs drawn in time to discuss results at that appointment — I know how tough it is to get in to see the endo, it’s nice to get the most out of the time we have.

I do hope you start feeling much better, but more importantly, that you figure out the root cause! Good luck!

[Ski]

in reply to: How Did Everyone know there was something Critically wrong with their health? #1181114

Hi Allie,

I’ve not heard of cataracts or hearing loss as a symptom or result of Graves’ Disease. Luckily, cataracts are fairly easily treated these days. The other vision loss you mention, you don’t define. There are many types of vision loss, so it’s hard to say whether that’s related. Your doctor will know what to look for, I hope you get some help!

My Mom dealt with hearing loss from the time she was in her early 20s, and I know that can be a tough one. She didn’t have Graves’, it was a completely different (fairly rare) condition, but I would urge you to get whatever corrective device is available to you for your hearing loss — Mom always felt vulnerable and “left out” when she couldn’t hear well. She didn’t let it keep her from doing things, but every group event was a struggle.

[Ski]

in reply to: methimazole and Hyperthyroidisim #1181312

Hyperthyroidism isn’t something we “get over.” When you’ve reached normal levels with methimazole, that’s when you keep the dose the same, but continue to monitor levels to ensure that the dose remains correct (adjustments are sometimes needed). Typical treatment plans include at least 12 months on methimazole, sometimes 24, before stopping to see if remission can be attained (remission meaning a period of at least one year where your levels remain normal with *no* medication at all). Others continue long-term use of methimazole to manage their hyperthyroidism.

[Ski]

in reply to: newly diagnosed, need advice #1181272

Hi Tina,

Welcome, I’m glad you found us so quickly!

You have great responses here — I just wanted to point out one more thing. Hyperthyroidism can do some serious damage to your body, and the longer you are undiagnosed, the more damage can be caused. Your body has a LOT of healing to do. The thing you need to know is that your body will not truly begin to heal until it has reached (and maintained) a healthy thyroid hormone level. Until then, you will definitely feel better, because you are on a course of treatment that is “quieting the madness,” but only after you get there will your body truly have the resources to heal those areas in your body that have suffered as a result of the hyperthyroidism. So please, be VERY VERY patient with your body during this time. It has not forsaken you. It has been under assault, and it needs time before you’ll feel truly healed. And when I say “maintained” a normal level, I mean a longer period of time than you want to believe, I know. Try to focus your mind on the improvements you see today over yesterday, rather than trying to see all the way to “well.” It’ll keep you pointed in a positive direction and it’ll help you get through this, I promise.

[Ski]

in reply to: How many have had proptosis reverse naturally? #1181201

My eyes are largely back to normal, but they never went completely nuts either. The truth is that the normal curve of TED includes some improvement at the end for all patients — the downside is that it’s usually much further down the road than you want to believe (all patients are different, but my recollection, faulty as it may be, is that it was 5-6 years after my symptoms began). The scar tissue is the thing that could keep them from coming back to normal completely, which is where the surgical options come in. As I’m sure you appreciate, surgery on your face carries with it some risk of “looking different” because miniscule differences in alignment of tissue can create quite a variation in the way your face looks, so while most of us would prefer to look “the way we used to,” we need to realistically look at the potential for improvement vs. risks of needing new adjustments afterward, when we contemplate surgical correction.

When we’re early on in the process, the swelling can change fairly randomly, so it’s hard to know whether it’s a result of something we’ve done or not. In the end, enjoy every period of improvement you get…

[Ski]

in reply to: No sleep driving me insane! #1180939

Hi meemeej,

I’m glad you got ONE good night’s sleep at least, that’s promising — at least you know that every once in a while, you’re capable of sleeping through the night.

The problem with “our” kind of insomnia (while hyperthyroid) is that it is CHEMICAL. It isn’t just that our mind is racing (even though that’s true), it’s that the gas pedal on our body is pushed all the way to the floor. That means everything that usually works for other people is not likely to work as well for us. It may help, don’t get me wrong, but it may not, and then we tend to feel even more frustrated.

We did have someone speak on this topic at a conference, and I remember it was specifically tailored to “our” kind of insomnia. There are a couple of things that may help — first, don’t attach too much significance to the actual “snore-fest” version of sleeping. Laying down and being still gives our body nearly as much benefit as sleeping. Our problem is that we get frustrated and anxious because we’re not falling off to sleep, so we lose any benefit we might otherwise get from just being still and resting in the dark.

Next, STOP looking at the clock. One look at the clock starts the whole internal conversation — “look at what time it is, S***! If I can fall asleep right this second I’ll only get xx hours and xx minutes worth of sleep before I have to get up, and that’s not enough, and now I’m worried about what I have to do tomorrow,” etc. etc. So keeping that information out of your grasp is better for your state of mind. Do whatever you need to — cover it, hide it, turn it to the wall, but keep those numbers out of your field of vision.

Also, do not look at anything with a bright screen (smartphone, tablet, laptop, TV) — bright lights tell your body that it’s daylight and time to get up, so you’re telling your brain to activate, then trying to lay back down.

The soothing sounds is a really good idea, and if you can get that to “loop,” even better, that way you won’t have to put any brain power into that either (“is it off? did it end? should I start it again? how long ago did it go off? have I been asleep?”).

Finally, if you’re really, truly awake, feeling like you’d just rather get out of bed, then do that, but choose something quiet you can do in dim lighting, like reading an actual book, or the paper, maybe make a cup of tea. Something that’s rather passive, so you can keep yourself in a semi-relaxed state while you do it. Give yourself 10-15 minutes, then head back to the bed and try again.

I know it sucks, I remember it all too well. I hope you find your best way to get rest while you heal and recover!

[Ski]

in reply to: Just off Methimazole & High Antibodies #1180968

Hi KatyPop,

I understand that remission is harder to attain when antibody levels are high — they wax and wane for reasons no one can fully explain yet — so it might have been a good idea to test those levels before you went off the ATDs completely.

The truth is that remission is defined as a period of time longer than one year when your levels have remained steady without any medication whatsoever, so you have not really experienced any remission, yet.

Still, long term management of thyroid hormone levels using small doses of ATDs is gaining traction, and can be a perfect treatment choice for many.

Bottom line is: stable, normal, thyroid hormone levels.

Abnormal thyroid hormone levels MUST be brought into the normal range, or you risk all kinds of issues, so just keep that as your baseline requirement going forward…

[Ski]

in reply to: Feeling OK but Looking Horrible #1180836

Hi Sue,

Catching up with a question back up the thread a bit — your regular eye doctor may not be able to see signs of TED in a regular eye exam, unless your eyes had changed radically since you saw them last. The changes from TED are most easily spotted using imaging technology where you can see the soft tissues around the outside of the eyes, that’s where the changes happen (the muscles controlling the eyes swell).

I know it’s not particularly comforting, but autopsy evidence shows that nearly every Graves’ Disease patient has SOME level of TED — it’s just that, in most patients, the symptoms are so minimal that it’s not clear what’s happening. The comforting part is that only about 5% of patients end up suffering the very worst symptoms, so your odds are good for being one of the people who are not affected very much.

Hypothyroid levels can bring out the symptoms, and bodily stress (like recovering from surgery) could also bring on a little “oddness.” The symptoms you were suffering when you went to the eye doctor are possible with TED, though of course I couldn’t say whether it was or wasn’t, in your particular case. It is common for TED to affect one muscle more than the others, so it’s more swollen, which can make one eye track differently, maybe more slowly than the other eye, then you’d get that sense that they weren’t working together.

I had some period of time where I felt like my eyes were affected – my eyes protruded more than they normally did, and they were gritty and uncomfortable for a few months, and I could feel them being “pushed” from behind when things got REALLY bad. That may have lasted a few years. Then things started getting better, and now I’m pretty much back to normal, though my eyes are definitely affected when I’m tired.

I realize you’re talking about “sunken” eyes rather than bulging eyes, but I think there are rare cases where that can be the result — it’s been a little while since I’ve seen a TED presentation at a conference, but that seems familiar. No harm in getting to know an ophthalmologist just to have a relationship developed, in case.

[Ski]

in reply to: Is it or isn’t it? #1180889

Good idea, good to check. You could also ask about discontinuing the beta blocker — if your levels are normal (or hypo), the beta blocker might not be needed, but you would need to wean yourself (you can’t just stop taking it), so the steps for weaning need to be directed by the doctor.

[Ski]

in reply to: Biopsy this Monday. Completely overwhelmed…. #1180746

Hi Shaunak,

Welcome, we’re glad you found us, and congratulations on your beautiful baby!

You’ll know much more after the biopsy, I’m sure that will help you make your decision.

Graves’ Disease doesn’t typically include nodules that “stand out” individually, so there’s a chance that your hyperthyroidism is not necessarily caused by Graves’. Even so, you’d need to be treated for levels that are out of whack, but the options could be slightly different.

If it IS Graves’, then you really need to manage things by your blood levels, not by your overt symptoms. If your blood levels of thyroid hormone are off, you must do something that will correct it, or your body will suffer. Figuring out which of your options is “less awful” to you MAY turn out to be the decision you need to make, but having no treatment while your levels are abnormal is simply dangerous.

And thinking about a second pregnancy, you must be healthy before your body can support “building” another human, there’s no question about that.

Let us know what you find out, and feel free to come back and ask more questions!

[Ski]

in reply to: Grave’s Is Like A Summer Heatwave: Unrelenting And Muggy. #1180767

Hi FryingPan,

I’m so sorry you’re having trouble again, and we DO understand here, so it’s the right place to come and vent. We’ve all been there, certainly. As Jake says — warriors! I can sense that warrior spirit in you, and it’s in the tears just as much as the times you suck it up and do what you need to do. We need our entire emotional spectrum to deal with this one, as you well know. Forgive yourself for needing your own space to feel better.

I’m not entirely clear about your chosen treatment — if you’ve been having a stressful time, it has the potential to throw things out of whack, for sure. It’s good that you’ve had tests done to find out exactly where you stand, because I find that not knowing what’s happening is almost worse than feeling ill.

Of course, a stressful time plus new symptoms is more difficult exponentially, so I really do hope you are creating some type of solace for yourself. I’m so sorry to hear that the crafts and creativity fell flat for you! Sometimes a symptom of hyPOthyroidism is just not caring about things, so perhaps that’s where you’ll find your levels have gone (slightly one side or the other of normal can feel VERY similar). Again, I’m glad you’ve got tests being run. Once you know what you need to do to bring your levels back into the normal range, hopefully you’ll feel at least a little better very quickly, then the spiral can start working its way back up.

Hang in!!

[Ski]

in reply to: Another Husband #1180774

Hi Rickstar,

I’m not sure I can say anything that will truly help you in this situation, but I’ll give it a shot.

I appreciate the fact that you want to keep your relationship together, that’s an admirable goal. I’m not sure you can blame Graves’ for everything that’s going on, so then we get into an area that’s not my expertise. The marriage relationship is a very complex one, but I do know it takes two people who want to make it work. That means you both need to be willing to take steps to change things that aren’t working, no matter the root cause.

Do I understand correctly that your wife is ten years down the road, had RAI for her initial treatment, and she’s still having frequent thyroid hormone replacement dose changes? If she’s been struggling this long to come to a really normal place, then I can understand her frustration with the whole process, and the fact that she loses it over seemingly trivial events would be pretty common (they’re trivial, but they’re just one… more… thing…).

That said, though, our primarily relationship is meant to be our solace, our truly safe place, and it sounds like neither of you is feeling that way at this moment. That’s not something we can even hope to help with here. I can only pray that the two of you find a way to connect and get help to begin healing your relationship.

[Ski]

in reply to: Beta Blockers and Exercise? #1178908

As far as I know, beta blockers protect your heart, and keep your heart rate from going too high as well as minimizing the erratic heartbeat that can occur with hyperthyroidism.

Restrictions on exercise I know of are related to both those heart effects (which should be minimized while on beta blockers), and also the muscle damage that can occur if you are still hyperthyroid. Hyperthyroidism accelerates muscle damage, and restricts muscle rebuilding, so exercising while hyper can actually destroy muscle tissue and make your recovery take longer. Once you are at normal, stable levels of thyroid hormone in your bloodstream, that issue should be behind you and proceeding with a regular exercise regimen ought to be exactly the right thing to do.

[Ski]

in reply to: Anti inflammatory diet #1178785

The food with the highest level of iodine is seaweed/kelp, and that is the only food I know of that needs to be restricted for hyperthyroidism patients who still have a thyroid. Next highest (but far lower amounts of iodine) is shellfish, and the reactions among patients vary in this regard. Some seem extremely sensitive, others find no problem at all. “Swimming fish,” tuna, salmon, etc., have even lower levels of iodine and I haven’t heard about a need to restrict those.

For people who’ve had TT or RAI, again, that can be very individual, but I’m not sure why there would be any reaction without a thyroid. My experience is that it happened to me, though, and I’ve had RAI, so I know it can occur. Perhaps I still had very tiny bits of thyroid tissue that could react, I really can’t say for sure. Until you know for sure, I would recommend eating small amounts in one sitting so you can evaluate any reaction, for shellfish. Ask your doctor to be sure, but it’d probably be a good idea to keep away from seaweed/kelp in general until you’re completely normalized and stable.

[Ski]

in reply to: Hypo off the methimazole #1178879

Sometimes Graves’ Disease is so hard on the thyroid that it actually “kills” it, and then the patient will go hypo, and that way a person can be off methimazole and still hypothyroid. It sounds like you are taking methimazole right now though, is that correct? Anytime you’ve been off methimazole and then start taking it again, you’ll need to go through a period of figuring out the right dose to maintain normal levels, and this is a pretty typical beginning (dose is high enough to bring down thyroid levels, obviously, but may have brought your levels down too far) — you’ll need to manage the process with blood tests, but you should definitely be coordinating with your doctor’s office so you get to normal as quickly as possible. When we’ve been hyper, our judgment really can’t be trusted, you need to rely on blood tests to figure out exactly what to do next.

OH, one more thing. If you are off methimazole and hypo, it would be appropriate to take replacement thyroid hormone, and again, the amount you need would be managed by your doctor using blood tests, but your message doesn’t sound like that’s exactly what you’re dealing with.

I hope you’re back to normal and feeling better soon!

[Author]

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