[Ski]

in reply to: TWO HOUSEKEEPING BOARD INDEX QUESTIONS #1064993

Not sure why the automatic login wouldn’t work ~ does your computer accept cookies? You have to accept cookies in order for that function to work. Also, not all computers will automatically remember your password ~ if yours is one of those, then you’d see your member name populated, but you’d always need to enter your password.

As far as navigating the BB, I click the button in the green ribbon at the bottom of the page of posts that says "Board index," then that takes you back to the main list. I think due to the "thread" nature of the BB (subjects and posts specifically responding to those subjects), there’s no way we can just press a "next" button.

Oh wait, there are buttons to "view unread posts" or "view new posts" or "view unanswered posts," those buttons are at the top level (before you go into the individual sections).

Funny, this discussion sends me back to the way the BB was before ~ oh, ’twas an entirely different world! This BB is SO much more sophisticated. (Though both served the same function and were just as FANTASTIC!) ” title=”Very Happy” />

[Ski]

in reply to: Looking for Doctor Recommendation in NYC #1064996

Hi Lydia,

We can’t make specific doctor recommendations here, but people may send you private messages, so keep an eye out for those. There are some suggestions on the best way to find a doctor in the book that Jake & Nancy put together, "Graves’ Disease: In Our Own Words," including ways to have introductory interviews *without* fully signing up with the practice. Finding an endo is so personal ~ it has to do with their expertise in your particular issues as well as their attitude in treatment, AND the way you get along. This is going to be a longterm relationship, so if you go to a doctor and don’t feel good about it, please look for another. I know it’s time consuming, but it’s VERY worth it. If you have a way to drill down to an endo who specializes in thyroid disease, that’s a good place to start. Many endos primarily practice diabetes care, and don’t deal with thyroid patients much, so those are doctors to avoid. Our issues are complex, so it’s extremely helpful to have someone who is experienced.

[Ski]

in reply to: Newly dx with Graves/goiter #1065155

I completely understand your desire to do everything that may possibly help. Just cautioning that there is a LOT of bad information on the internet, so make sure you’re looking at something that can back up its claims. Lots of sites lead into very VERY bad information that is "cooked up" just to sell their concoctions (the more modern version of snake oil salesmen), which is why doctors typically make a face when we say we’ve done internet research. If you’ve been careful and done GOOD research, you will show the doctor that there are valuable resources out here.

[Ski]

in reply to: Armour Thyroid/Natural #1065070

Yep, Armour is T3 and T4 replacement thyroid hormone.
Synthroid is T4 replacement thyroid hormone (as is levoxyl, levothroid, and most other thyroid hormone replacements).
Cytomel is T3 replacement only.
Methimazole is an anti-thyroid drug, used for patients who are hyperthyroid.
PTU is another anti-thyroid drug.

[Ski]

in reply to: Endo in 3 weeks a little worried #1065032

Doctors get to have their opinions, but you get the final say. No one is going to strap you down and make you take RAI. Any doctor that takes an attitude when you express your opinion is not the doctor you want. That simple.

[Ski]

in reply to: Tongue hurts when hypo a possibility? #1065036

This is a new one on me! Still, imbalances in thyroid hormone can cause such wide-ranging symptoms, it’s hard to say yes or no conclusively…. Let us know if your doctor has some insight.

[Ski]

in reply to: Meds/Remission #1065051

PTU is the preferred med for pregnant women, but methimazole has surfaced as the preferred med for children due to cases of liver failure in children who have taken PTU. This can also occur with methimazole, but is less common. In an abundance of caution, some doctors are going with methimazole most of the time for everyone.

[Ski]

in reply to: Armour Thyroid/Natural #1065066

Even synthetic thyroid hormone replacement is chemically identical to what our body produces. At first when Armour was produced, they had issues with consistency precisely because it was "natural," and so was more concentrated in some areas than others. Those issues have since been resolved, I’m just pointing out that any thyroid hormone replacement we take is not "invasive" to our body, it’s exactly the same as what our thyroid would release. The small amount of T3 in Armour actually can be damaging, to some, so it’s something to consider carefully. What typically happens with those who have problems is that the patient feels better in the short term, but in the long term begins to see hyper symptoms again, then must switch in order to stay healthy.

[Ski]

in reply to: Newly dx with Graves/goiter #1065153

There are claims out there that diet/exercise can help, but nothing has ever been scientifically proven in a good, solid, double-blind, large group study. Make sure that when you are looking at internet information, you check for certifications by medical authorities, to know that the information you’re reading has been checked/vetted by someone in the medical community. The fact is that GD antibodies wax and wane for reasons no one really understands completely, so while symptoms/levels may change after a period of diet/exercise adjustment for some people, that may (or may not) be attributed to the patient having made those adjustments. As long as you are having your levels tested, if they are in the normal range, then that’s the goal, however you get there. Lack of symptoms does not mean lack of trouble. Hyperthyroidism can cause subtle damage as well, damage you can’t necessarily feel moment to moment, but left unchecked, over time, it can all come crashing down. I’m glad you are going with ATDs for now, I think it’s a great way to begin.

I need to respond to the statement that RAI has *affected* other family members even after 3 days have passed after treatment ~ not so. I only say that to make sure that we have the best possible information here.

[Ski]

in reply to: surgery???? #1065081

Once again ~ all three treatment choices can bring us back to health, and none of them will leave you feeling awful for months and months before making any difference. ATDs can bring your levels down rapidly. Surgery brings your levels down rapidly. RAI brings your levels down rapidly. Adjusting afterward is usually the part that is a little complicated, but still, remember that feeling better starts right away with all of them (after the excess thyroid hormone has left your bloodstream, which can take up to six weeks no matter what you choose).

[Ski]

in reply to: Mother-in-Law Diagnosis…and confusion #1065059

It’s impossible for us to do anything but guess, of course ~ I can only tell you that if, indeed, she HAS had Graves’ for a long time and her doctor was giving her meds to keep the levels in check, it is POSSIBLE that her thyroid has finally stopped functioning (it can happen due to the antibody attack), which would necessitate a move to thyroid hormone replacement instead.

You’re in a tough position on this one, and with the history you describe, I would suggest that unless you can have a consultation with her doctor to clarify everything, just go with what you’re told and leave it at that. Some people have a real need to "tell stories" (let’s say it nicely), and they find some solace in that. Trying to find *the truth* can just cause more trouble, because they tend to act as if you are attacking them (since they have no *truth* for you). As long as you can protect yourself from being led around by these "stories," they do you no harm. If the stories and lack of honest communication do your family member harm, well, they’ve put you in a position where you are unable to deal with it or help them deal with it, so you can’t blame yourself.

[Ski]

in reply to: So curious about how GD affects eyes. #1065096

Something to consider with TED ~ every person with TED goes through a defined disease curve ~ there is a period of activity, where the eyes change fairly rapidly and often (the ‘hot phase’). This is followed by a period of stability where nothing changes much, then a period of improvement, and finally, stability ~ whether your eyes have returned completely to normal or not. The degree of changes and improvements is different among all patients, but that is an absolutely certain list of steps, it happens to every patient, in that order. So it is possible that your TED symptoms would’ve stabilized without anything changing, without any extra meds, without going off the meds. It’s hard to correlate things precisely when it comes to TED. Some people have more than one "hot" phase, but that’s rare.

If you have indeed hit the "cold phase" of TED, then it’s unlikely that RAI could affect your eyes at all, but the bottom line is that the only evidence we have of some increase in TED symptoms following RAI is one small-ish study that has not been replicated since. Even those patients experienced no permanent change, just a "temporary worsening" of symptoms that resolved after a few months, and if the patient took a concurrent course of oral steroids, the incidence of this phenomenon fell to zero. So RAI is still a potential course of treatment for you, if you are interested. If not, I always say it ~ the choice of treatment is yours!

[Ski]

in reply to: Newly dx with Graves/goiter #1065150

Autoimmune diseases run in families, not necessarily Graves’ ~ so you might have relatives with lupus, rheumatoid arthritis, diabetes, or other autoimmune diseases (even Graves’), but it isn’t a direct link Graves’ to Graves’ to Graves’. Stress seems to be a contributor to ending up with Graves’, certainly, but it’s not a direct cause. One doctor describes it by saying that we have a genetic predisposition, then some external trigger flicks the switch and then we have an autoimmune disease. We’re not sure precisely what that mechanism is yet, and that’s where the research is going.

Having an autoimmune disease is more like having an overactive immune system. It means your body has developed additional antibodies ~ to your own tissue ~ in addition to the antibodies you’ve built up over time to various diseases. So it doesn’t mean your immune system is compromised, per se. What it does mean is that, whenever your immune system is "boosted," your symptoms will also be "boosted," at least while you have active, functioning thyroid tissue, because the damaging antibodies will become active just as the helpful ones are activated. For that reason, we need to be careful with supplements that purport to boost the immune system. I do use echinacea, but I can’t take as much as the package recommends, or else I feel it.

[Ski]

in reply to: So curious about how GD affects eyes. #1065094

Hi Susan,

Your dose of Synthroid doesn’t have the ability to affect what’s going on with your eyes. If you feel you may be seeing early symptoms of TED (bulging is not the only one), then find an ophthalmologist and have an examination to see what’s going on. It must be an ophthalmologist (not an optometrist or optician), because they are the only doctors with specific training related to TED. Even though GD and TED occur together, their progress and affect on us are unrelated. In other words, treatment for the thyroid disease does nothing to treat or prevent TED.

[Ski]

in reply to: Newly dx with Graves/goiter #1065147

Everything Bobbi said is spot on ~ I just wanted to speak to the part of your post that talks about thyroidectomy. The fact that your doctor tossed off "that isn’t done much anymore" is a bit unsettling, because in fact thyroidectomy is still a viable treatment that people take advantage of, and it can be very safe in the hands of the right surgeon. If it is what you would prefer, then you should pursue it no matter what this doctor says. Too many doctors have the attitude that they have done their studies and they have decided which of the multiple options they prefer, so every patient should do exactly that. In this case particularly, that is not helpful. Each of our three choices can be successfully managed, and we can regain our health. In my opinion, the single most important contributing factor to having a happy patient after treatment is one who was educated and made their own choice ahead of treatment. So do consult with your doctor, listen to what they have to say, but retain the right to make your own choice. As long as there is no particularly life threatening reason to choose one over another (the most extreme example being that a hemophiliac would not be wise to choose surgery), the choice belongs to you, no matter how much your doctor would like you to do exactly what they recommend.

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