[Ski]

in reply to: Graves Post RAI and eye puffiness #1061596

How could I forget? You reminded me (it was so long ago) ~ the first symptom that sent me to the doctor was puffiness around my eyes, which continued until I was no longer hyperthyroid, and was not TED. It’s tough to know exactly what’s going on without an exam by a good ophthalmologist who knows about TED.

[Ski]

in reply to: Questions regarding Graves’ & TED #1061556

Hi geminous,

Sorry for the lag in getting your post up for responses ~ we get a lot of spam, so we require an approval process before a member’s first post can be revealed (saves you from clicking into a lot of advertising, believe me…).

In any event, we’re so glad you found us! TED is definitely an emotional issue as well as a physical one ~ some of the eye doctors we’ve heard at our conferences have tapped into research that shows TED patients are more depressed even than cancer patients! How we look has so much to do with how we feel about ourselves, how we present ourselves, how comfortable we feel relating to people, that it can be really debilitating when that starts to go crazy.

I can’t spend too much time replying right now, but I’ll get more in depth later (or someone else will jump in) ~ I just wanted to tell you that there is a definite disease curve with TED, and many patients with small changes end up reverting to their normal look without any intervention (I did). In the meantime, do whatever you need to do to be comfortable ~ limiting wind/dust/sun exposure will help, and dark sunglasses can be a godsend when you’re among others. Remember always my favorite advice from Bobbi: she had some eye issues, and spent some time looking in the mirror to decide what "look" worked best. Bottom line: a smiling Bobbi looked better than all the others. So smile. ” title=”Very Happy” />

As far as your thyroid hormone replacement ~ you need thyroxine, that’s what you’re taking replacement for, so you should not abandon a thyroxine pill for one without thyroxine. There is a real cottage industry around "thyroid support" supplements, but they are not regulated or proven to "solve" anything. Best to go with those that have been vetted, especially in the absence of your own thyroid to produce thyroid hormone. The best answer is to get your levels normal, and then find YOUR normal within the gargantuan normal "range." Your doctor needs to be a team member in adjusting doses ever so slightly to ensure you find YOUR normal. A symptom diary (kept daily and shared with your physician at appointments) can definitely help.

By the way, your thyroid hormone replacement and thyroid hormone levels have nothing to do with your TED symptoms ~ they follow a separate course entirely. Treatment for one does nothing for the other.

[Ski]

in reply to: Graves Post RAI and eye puffiness #1061594

There can be some connection with hypothyroid levels and puffiness around the eyes, which is not exactly thyroid eye disease, and sometimes does resolve when levels are normal and stable. There is also some puffiness that CAN be caused by thyroid eye disease (pretty rare), but if you’ve had an examination by a neuro-ophthalmologist, they should be able to say conclusively whether your puffiness is caused by TED.

[Ski]

in reply to: graves disease #1061598

It definitely takes time (lots of time) for the body to heal from the onslaught of hyperthyroidism caused by Graves’ Disease. It has been affecting literally every cell in the body for as long as you’ve been hyperthyroid, and it affects certain areas in specific ways (muscle loss in the large muscle groups, for instance), but other areas in rather random ways that are very individual to each Graves’ patient. So you are in for a period of recovery, but try to be grateful you have reached a state of recovery, and look each day for small things that are better today than they were yesterday. It’ll help carry you through. In the meantime, please be very good to yourself ~ don’t do the things that just serve to suck the energy out of you, or at least limit those things, so you can maintain some level of stamina.

I’m glad you found us! Believe it or not, you are very early on in the process, so you would do well to get some good resource material and get a really good handle on what’s been going on in your body, and what steps you need to take going forward.

[Ski]

in reply to: 3 meds in 4 weeks! Bad Endo in Va; I need a new one! #1061600

I completely understand ~ there’s no reason for a doctor to treat anyone that way, it would be very disappointing! I’ve had a couple of similar circumstances, and it’s something that’s just such a betrayal, from those who are supposed to be the experts in the field and the most equipped to help, or guide us.

I hope you get some specific advice on a new doctor from someone in your area, but if you don’t, you may want to make a phone call to one of the offices that are among your options, and talk with the head nurse in the practice, or even someone at the front desk, to get a general idea of how they "perceive" the doctor they work for. It can be rather illuminating, and can give you at least a little bit of comfort (or perhaps help you scratch the name off your list).

As far as your thyroid levels, YIKES! If your thyroid is still functioning at some level, you are going to be very, VERY tough to manage, so I completely understand your desire to just get to "zero" and go from there. In the meantime, I think you may benefit from some "calming" therapies, just because the less anxiety you feel, the less the antibodies will be stimulated, and you may be able to keep some spikes from happening. It’s no guarantee, but it’s certainly the right direction, as you navigate through to your next step. There’s nothing specific to recommend, just pick something that works for you to soothe your soul and give you peace. It could be yoga, it could be reiki, it could be massage, or it might even be watching a funny movie and having a long, hot bath. Just keeping yourself in a less anxious state *might* help.

I wish you luck!! Once your levels are normal, and stable, you should seek out a physical therapist. That’s the best place to start in evaluating your overall strength and developing a good exercise plan that won’t cause any harm as you re-develop the muscles that were damaged during hyperthyroidism.

[Ski]

in reply to: Graves and Birth Control #1061652

We do know that pregnancy tends to make things worse, after you’ve delivered. Theories abound, but we do know the immune system "quiets" during pregnancy to allow the foreign body (baby) to survive, and it seems that afterward the immune system ramps up back to normal ~ and maybe beyond? – which exaggerates the symptoms and makes it appear that the situation was "caused" by the pregnancy.

There’s no question that reproductive hormones play some role interacting with thyroid hormone in the bloodstream, so no matter what our status, we should be checking levels when something changes reproductively (adolescence, pregnancy, menopause, or birth control status if it depends upon a reproductive hormone).

[Ski]

in reply to: Is it possible I’m in remission? #1061613

Just a quick comment on your question about remission ~ remission is defined as a period of more than one year when your thyroid hormone levels remain normal in the absence of any medication or thyroid hormone replacement, so you couldn’t possibly be in remission right now. Even if your levels were normal right now, you’d have to maintain that for at least a year first.

[Ski]

in reply to: to facilitator re PM-how delete msgs? #1061603

Hi Shirley!

You made me go look ~ I forgot! ” title=”Very Happy” /> When you’re looking at the list of messages, there’s a "mark" checkbox on the right side. Click and "check" the boxes for the messages you’d like to delete (or you can choose "mark/unmark all" at the bottom of the list). Then go to the bottom of the list and you’ll see a dropdown menu that says in it "mark/unmark as important" ~ when you click to see the other choice in the menu, it’s "delete marked." So choose that and click "go," (just to the right of that dropdown) and awayyyyy they will go. ” title=”Very Happy” />

Do post again if that doesn’t work, or if I didn’t explain it well enough!

[Ski]

in reply to: My Thyroid Uptake came back 8.4%??? Now what? #1061631

We don’t typically have nodules with Graves’ Disease, not the nodules that are a localized "mass" different than the surrounding tissue. Those are a different phenomenon entirely.

Classic Graves’ uptake is a diffuse pattern across the entire gland, and high percentage uptake. Sometimes it gets confusing because the way they will refer to that is "multinodular toxic goiter," or something like that, making a person think they have several nodules, when that’s not exactly what that means. The pattern is relatively important in determining normal/abnormal uptake also, so did anyone mention the pattern of uptake in your results? If the pattern AND percentage were normal in your results, then that pretty much speaks for itself. Normal is normal for a reason.

Low TSH is a problem, but thyroiditis can also cause transient hyperthyroidism. Luckily, it typically resolves very quickly, so let’s hope that’s what’s happening with you.

[Ski]

in reply to: How many of you are happy with your total thyroidectomy? #1061638

Antibodies are very specific ~ think a "lock and key" relationship. They are the key to one specific lock, and they have absolutely no effect on anything else. If you had a thyroidectomy and are still experiencing hyperthyroid symptoms when your antibodies are high, then there’s a CHANCE there’s still a trace of thyroid tissue in your body that is reacting to the antibodies. Typically there’s a little bit left after the surgery simply because the tissues nearby the thyroid are so delicate ~ vocal cord nerve, for instance ~ so they leave a little bit to avoid causing harm. Even that tiny bit could be susceptible to the antibodies and could release excess thyroid hormone into your bloodstream. In VERY rare cases some thyroid tissue "migrates" outside the area you would expect thyroid tissue to be in, but it still functions, so again, it could be affected by the antibodies and could produce excess thyroid hormone, causing issues. TSH levels wouldn’t show it for a few weeks at least (it serves more to respond to a "running average" of thyroid hormone levels), but if your T4 levels have been bouncing around recently, that’s something to think about.

The bottom line for you is to press your doctor to solve your problem, not pat you on the head and tell you "your thyroid levels are fine." My only advice would be that you should walk into the office with as much data as you can (your own symptom diary, for instance), but NOT with an opinion as to what is causing your problem, because it’s too easy for the doctor to slap that away by saying "it couldn’t be that," and then they go about their day, leaving you miserable and still unwell. Make them think. Say "this is how I feel, these are the problems I’m having ~ what will you do to help me? And if not you, who will you send me to?"

[Ski]

in reply to: Does thyroid removal stop the formation of antibodies? #1061642

Interesting questions!

As always, we aren’t able to evaluate your lab test results, but you can see WHERE you fall in relationship to the high end or low end of each level, and with historical lab results, you can see whether your levels are *changing* in the face of the rising antibody levels, which may be very illuminating. Any T4 level that is above YOUR NORMAL POINT (or TSH level below your normal point) will create symptoms in your body of hyperthyroidism. That’s why we bang the drum to FIND your normal point, rather than accepting any level within the normal range. A symptom diary may help to start the discussion with your doctor ~ keep a record, each day, of your symptoms, their severity and their affect on your life. After about a month, you can take that to your doctor and discuss a plan to resolve your symptoms, no matter their cause.

Antibody levels rise and fall for reasons that no one has been able to fully explain. While we don’t know every reason they rise or fall, we do know that they typically rise when we are faced with an illness, which is very normal ~ the purpose of antibodies is to fight illness, so they activate upon a state of illness ~ and they also rise in times of stress, which, again, is a protective measure the body puts in place to protect you when you are vulnerable. Unfortunately, our GD antibodies are kind of like a "fox in the henhouse," because they travel with the antibodies that help us, so that complicates things.

One thing you should remember is that support groups and bulletin boards are heavily slanted toward illness ~ people who had RAI, or use ATDs, or had surgery, and are satisfied with the result and feeling healthy, would NOT seek out our board or support, because they are feeling fine and going about their lives. People who have experienced ongoing issues will search us out, because they need help. It ends up looking as though "everybody" has problems, when in fact that’s not true.

Believe me, you’d have a lot of unhappy patients if the only protocol were to remove the thyroid surgically. We have plenty of people here who have taken ATDs and been successfully managed longterm for many years on low doses, or who have attained and maintained remission for many years, and those people would argue that they’ve retained their body in its original state, so how could that be bad? If it comes back, they’ll look to other options, but in the meantime they’ve had years and years of health. Not everyone experiences constant fluctuations ~ if they do, thank goodness they have another option, but if they don’t, it’s not the nightmare you describe, certainly.

Personally, I had RAI (and needed it twice), but now I feel well and am successfully managed on replacement hormone. I would have been horrified if someone had told me that my only treatment option were to cut my throat.

One of the speakers at our conference in 2009 gave a terrific presentation on just this topic ~ pointing out which factors would steer a particular patient toward one or another of our potential treatments. The reasons for choosing one treatment over another are nearly as numerous as patients who do the choosing. Bottom line, a return to healthy thyroid hormone levels WITHOUT SYMPTOMS is the goal, and however anyone achieves it, great. In addition to that, a patient who is educated about the options and consequences is usually much happier with the results, in my experience watching the BB, no matter which choice they made.

If you are convinced your symptoms are thyroid related, then you should keep pressing your doctor until they figure out what to do about it. If they say they are not thyroid related, then you should keep pressing your doctor until they figure out what IS causing your symptoms and how to relieve them. Staying unhealthy is simply not an option, and you sometimes need to fight to get your health back. Doctors are never as concerned about our health as we are.

[Ski]

in reply to: Does thyroid removal stop the formation of antibodies? #1061640

Removing the thyroid doesn’t necessarily stop the formation of antibodies, but the antibodies don’t make you sick by themselves, they make you sick by acting on the thyroid and making it release too much thyroid hormone, so hyperthyroidism is the illness. Without a thyroid, no hyperthyroidism (as long as your replacement hormone dose is correct), but even through the process of adjusting thyroid hormone replacement, your levels will never spike radically out of control like they can when antibody action is high and your thyroid is reacting to that.

Now it’s a little confusing hearing that your T4 and TSH levels are normal, because without a reading of hyperthyroidism, your doctor likely wouldn’t take any action. The difference is that your symptoms are so severe. Have you actually seen copies of your blood test results? The normal range is really enormous, and if you fall within it anywhere, the doctor will see a "checkmark" next to "normal" and say everything’s fine, but you may be 0.1 away from leaving the normal range, which is something that the doctor may not address, but you could bring it up and discuss with your doctor the fact that you are very nearly NOT within the normal range, then the two of you could discuss likely treatment options, or routes to take to SEE if you can find health at a different point along the range.

The fact is that we Graves’ patients come in all sorts of mindsets and with all kinds of different opinions, and luckily we have three treatment options that give us some leeway in the decision of how to treat Graves’. I chuckle when you say "why don’t we all," because for the most part, each of us that has done any research and made a decision feels as though it was the best possible decision, and we think everyone should just come along and do it our way ~ but we’ve all chosen different treatments, so there you have it. The decision is just as much emotional as it is practical.

I really hope you find a path to feeling well soon, it’s so debilitating to feel unwell all the time, I know!

[Ski]

in reply to: New here. My journey with Graves #1062215

There aren’t that many people who need to do it a second time, they are definitely in the minority, and shrinking all the time, since the newest conventional wisdom is to aim for an ablative dose. For some years there were doctors who believed they could hit "just right" instead of compete ablation, so there’s your collection of people who needed it done twice (I am one ~ I had decided upon an ablative dose, as had my endocrinologist, but no one shared that with the radiologist…).

There are still endocrinologists who do not know the latest on the subject, and will sometimes go along with patients who believe this could work out, so there’s another group of people who likely need some other treatment later on, but again, the news is getting around.

Now that the goal is commonly ablation, there are far fewer "2-timers."

[Ski]

in reply to: Need some suggestions I have TED …. Help?? #1061663

WOW, you are going through a lot! It would appear that you’ve got several things going on, because I don’t think any one thing explains everything. I hope you’re still seeing an endocrinologist (or that you trust your general practitioner) to watch your thyroid hormone levels? Try keeping a daily diary of symptoms, including the severity and frequency of those symptoms, and after about a month, check in with your doctor to evaluate your records.

Also, whenever your doctor tells you a symptom you’re having is not related to your thyroid, please then ask for a plan of action to find out what it IS related to, and how to resolve it, because nearly everything has a cause and, once you find it, you can get some relief. Not everything is thyroid or TED-related, and you deserve to find out what is going on so you can feel well.

The eye symptoms may well have a solution ~ are you seeing either an ophthalmologist or neuro-ophthalmologist? We recommend finding a doctor that’s affiliated with ASOPRS, these are ophthalmologists with extra training specifically related to TED. Here’s a link to their site http://www.asoprs.org.

[Ski]

in reply to: Help. RAI an option? I have thyroid eye disease too. #1061688

You’ve got great advice here ~ just weighing in on the dangerous side effects of ATDs, since we heard something about this at our last conference. It appears that MOST of the time, if you are going to experience the very worst side effects (liver damage or severely lowered white blood cell count), it typically happens in the first six weeks of taking the ATDs. Not to say that’s the same for every patient, but most patients present with these symptoms quickly, so you can have some level of comfort after you’ve passed that point and all is well. Unfortunately, once you’ve been successfully on ATDs for a long period (and then stopped), you cannot say that you are out of the woods in this regard, because every time you begin taking the ATDs, the clock starts again and it COULD rear its head in the first six weeks. Still, it’s nice to know there is some specific length of time, after which most patients do not experience the scariest side effects.

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