[Ski]

in reply to: graves eye disease #1075696

The "wavy line" may be the visual aura that can accompany migraine headaches ~ some people get them along with the headache, some as predictors that a headache is coming. As far as I know, they have no direct relationship with thyroid eye disease. I’m lucky, somehow I get the aura with no headache (PHEW). I’m not sure which is the right doctor to ask about those, so I’d start with my general practitioner, if I were you. I find that it helps to pop 2 aspirin when I first see the aura (most times it begins as a sparkly dot in the middle of my vision, then it grows into a circle with normal vision in the middle and a sparkly rim, then disappears when it’s too big to see), but you should get a recommendation from a doctor. I know there are true migraine medicines now, and if you are getting migraines often, you may want to take advantage of those.

Not sure what to say about the lacrimal glands, please do let us know what you find out in the end! New info is always appreciated….

[Ski]

in reply to: Radiotherapy #1067662

I presume you’re talking about radiotherapy to the orbit of the eye (directed radiation into the orbital cavity)? I do know many people here have had this procedure done (though I’m not one of them) ~ there was a recent thread where Nancy Patterson said she used to collect stories about what people had done with their "masks" (used to make sure each treatment is directed to the same precise point).

Again, this treatment for thyroid eye disease was just discussed at the conference, and the doctor speaking on the topic mentioned that the results may be seen over a length of time ~ in other words, you may be finished with all ten treatments, and yet see results weeks or even months later. Have you gotten any relief yet?

[Ski]

in reply to: Feeling lazy… #1067673

Again, we sympathize, we know how you feel! The most important thing right now is to get SOME kind of treatment to start bringing your levels out of the hyperthyroid range. You can take ATDs for a short time in order to bring your levels back into the normal range, give you back some energy, and return your brain to fully-functioning status so you can really think through the options and make a treatment choice that you feel good about.

Keep a couple of things in mind. You ARE sick. Your body is experiencing a severe metabolic imbalance. If, God forbid, you had cancer right now and were undergoing chemo treatments, no one would call you "lazy." We suffer from the misunderstanding of other people, but it doesn’t mean you should ignore your own illness. If they don’t want to understand why you’re sick (even though you don’t *look* sick), that’s their problem, NOT yours.

If a walk leaves you more exhausted than when you started, don’t walk so far next time. It’s really that simple.

Let me just quickly say that *every* Graves’ patient I know has been the "go to" person in the family, the one who handled everything, for everyone. You can no longer take on that role and remain healthy. As a friend recently told me, "Superwoman doesn’t live here any more." ” title=”Very Happy” /> We typically take that role on and are very proud of it, and you may even be able to resume that role one day, but NOT NOW. For now, YOU need to come first, and probably second, third, fourth and fifth. You can get through this, and it’ll be easier for you to manage if you take good care of yourself. Learn to say no. Learn to compromise. Learn to delegate. It’s for your own good. Drop the guilt. That’s no good for you. Do things that feed your soul, that give you MORE strength and energy, and drop those activities that only suck your spirit away. Give yourself some time to decide which things belong in which category, but go easy on yourself.

[Ski]

in reply to: H1N1 vaccine and graves #1067667

This came up at the conference, just yesterday ~ the endocrinologist who was speaking (who has been treated for Graves’ himself, by the way) said that he wouldn’t hesitate to get a live virus vaccine. If you have OTHER issues that may preclude it being safe for you, that’s something to consider, but he wouldn’t consider having Graves’, or being on ATDs, as a "point against" getting it.

[Ski]

in reply to: Spiraling #1067681

It’s VERY reasonable, and it’s got some of the best information out there.

If you’re hyperthyroid, I wouldn’t be surprised to find that this event has its roots in that very imbalance. Too much thyroid hormone is incredibly tough for your body to handle, and it can show itself in many, many ways. Take it easy on yourself just now. Make sure you get enough rest (when you can), and do ONLY what you can tolerate. Start learning to say NO. I realize it’s tough. We’ve all been there and we understand, believe me!

[Ski]

in reply to: Spiraling #1067677

Hi there,

I will admit that some really weird things can happen to us while we’re dealing with Graves’ ~ I don’t recall where you are with your treatment, can you remind me?

If you’re hyper OR hypo, meaning if your thyroid hormones are imbalanced either way, things could be strange for you right now, and each of us is so different that it’s really impossible for me to say whether it could be a manifestation of Graves’, or hypothyroidism, or anything to do with Graves’ at all. Your doctor is really the authority on that, and you should investigate, because I know it’s scary. I do remember a brief period when I kind of "forgot" how to read. Considering I’ve been doing that since I was 3 years old, that was REALLY scary. It resolved with normalizing levels. In the interim, it was rather upsetting.

If your doctor tells you it should not have anything to do with your thyroid hormone levels right now, then press the point and ask what it IS, because it’s up to the doctor to find it for you, to know where to go and what to test so you can figure it out and solve it.

[Ski]

in reply to: Not genetic #1067690

The cause is at least two-fold ~ first must be the genetic component (a predisposition to autoimmune disease, which may NEVER have presented in prior generations, or may have shown up but remained undiagnosed ~ anyone have a "crazy" old auntie???), and second must be an environmental trigger, which triggers are still being investigated. Some classic triggers seem to be stress and hormonal changes in the body. Once the trigger activates the disease, the body begins making antibodies and we react ~ the antibodies are like a key that fits the lock in certain similar tissues in the thyroid, the orbits behind the eyes, and the skin on the front of our shins. Not everyone is affected in the same way, but once the antibodies have gone to work, then additional stress can elevate the antibody levels and thus increase symptoms.

I hope that helps!

[Ski]

in reply to: The conference #1067684

Thanks for posting these! It’s my favorite event all year, bar none. ” title=”Very Happy” /> And believe it or not, I find out something new EVERY time. It was lovely meeting all the new people, reconnecting with friends from prior conferences, and enjoying the SWANKY hotel (I had to climb into my bed each night, I felt like a princess!). ” title=”Wink” />

[Ski]

in reply to: Still experiencing symptoms…but labs are normal? #1067792

The differences between meds (Levoxyl vs. Synthroid) can be subtle, but in the end the improvement you heard about may just be that your friend’s body metabolizes Synthroid differently so that whatever dose level she was put on affected her "just right," and more (or less) of the Levoxyl could have served just as well to help her feel better.

Typically doctors do NOT recommend switching between brands (or to/from brand name and generic) because small differences in the fillers can result in your body metabolizing the dose differently, so you actually begin an entirely new process of adjustment to find the "right" spot for you.

It’s true that you need to find YOUR normal before you will really feel right on replacement hormone, and it’s best to have a doctor who will support you in that search. It will take time. Each dose change needs 4-6 weeks for your body to completely adjust and for blood tests to accurately reflect what’s happening.

Also, once you’ve hit "your" normal, it STILL may be a while before you really, truly feel better completely, because your body can only then BEGIN to heal from the effects of hyperthyroidism on your body, which are many and as varied as the Graves’ patient themselves. We are all different, and nobody’s experience can conclusively say what will happen with you. Best to know what you’re doing, and proceed accordingly.

[Ski]

in reply to: Effects of RAI #1067695

The standard time recommended for isolation after RAI varies among doctors, though the trend in the U.S. is to worry less and less about that. In addition to that, the fear factor is common, but the facts do not prove out any future risk with RAI.

Still, as mentioned by elf, if you are happy on ATDs, you should be perfectly fine making that choice and continuing with them. All three treatments have their pros and cons, and if you’ve found one you like, no particular reason to switch. The conventional wisdom in the U.S. is slowly shifting, but traditionally the U.S. has treated Graves’ more with RAI than ATDs. Europe and Japan are just about exactly reversed from the U.S. as to treatment patterns (more patients on ATDs than using RAI). Right now the tide seems to be turning in the U.S. so treatment here may eventually align more with the habits of Europe and Japan. In the end, it is absolutely YOUR choice ~ unless you experience one of the more severe side effects of ATDs, then you simply must choose something else. Those severe side effects usually show up within the first 90 days of any course with ATDs (if you stop and restart, the 90-day clock runs again), so keep that in mind. If all else is going well with you, ATDs remain a valid choice for your treatment, and the final say is YOURS.

[Ski]

in reply to: Grave’s & Pituitary connection? #1067724

Hi Debra,

This is certainly a complex mix of issues for your husband, and these are great questions for his medical team ~ I’ve never seen any case this complicated mentioned here, and of course we are not experts on anything except our own Graves’ experience and some of the facts related to the symptoms and treatment of Graves’. The only thing I can really say for sure is that if his pituitary is malfunctioning, the feedback loop involving your husband’s thyroid hormone levels may well be interrupted, and the doctor would have to judge your husband’s thyroid hormone levels by purely T4 and T3 blood levels, rather than TSH levels. That’s up to the doctor to figure out, of course. The pituitary is involved in MANY feedback loops in the body, so if it’s malfunctioning, they could all be out of whack and things could get a bit crazy.

Keep on the doctor and make sure you get everything tested that is recommended. If I were you, I’d get a handle on all of this with some good paperwork (keep a binder of his test results, educate yourself as to what all the aberrant levels mean, etc. etc.). You and your husband are most certainly more interested in all of this than the doctor (interesting as it may be, the doctor doesn’t have the time to devote that you do), so delving into the details of what’s been happening can only be to your benefit.

[Ski]

in reply to: Going into surgery next week! #1067865

Hi there!

So glad the surgery went well for you, and you’re on your way!

Your replacement dose will take time to figure out ~ there’s no way to know exactly what dose will be best for everyone ~ but you shouldn’t be going remarkably high and remarkably low as you work it out, so (once again, as in everything Graves’) patience!

The issues with the way your face looks may have to do with Thyroid Eye Disease (or Graves’ Eye Disease, or Graves’ Ophthalmopathy ~ same disease, different names), so you should talk with an ophthalmologist about that. It appears to be caused by the same antibodies that cause the thyroid disease, but it has its own course and treatment that do not relate to the thyroid disease. Going severely hypo MAY be a contributor, but that hasn’t been proven yet ~ in any event, an ophthalmologist is the one to consult, NOT an optician.

Wishing you luck! Keep sending updates!

[Ski]

in reply to: graves eye disease #1075694

I met a lot of people at the Graves’ Disease Foundation conference this weekend who could sympathize, believe me! Once they get home and start posting again, you’ll see some very empathetic responses. Without a doubt, the eye symptoms are the most difficult thing to deal with, especially emotionally. I really hope you can find a way to get some dark glasses and join the world again. That’s really the hardest part ~ seeing people lose their connections with others. It’s SO important! Please let us know how it’s going.

[Ski]

in reply to: Having RAI in 3 weeks…LOTS of Questions… #1067811

If your thyroid levels are high, you’re a high-risk surgical patient, so likely the doctor will ask to wait until your thyroid hormone levels are managed and stable. It may not be as long as you fear for that to happen. Connect your surgeon and your endocrinologist, have them talk with each other about your particular issues and come up with a plan.

[Ski]

in reply to: Going into surgery next week! #1067863

Nancy asked the question about smoking at today’s conference session, and the answer was that the smoke itself is likely the culprit, not the nicotine. The doctor commented that the muscles most often affected by TED are the very same muscles that abut the sinus cavities, which are separated from each other by a paper-thin membrane, so the likelihood (though not proven) is that the actual smoke affects the muscles almost directly by virtue of that connection. The nicotine patches should be safe for you to use. I hope that helps!

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