[Ski]

in reply to: Help with Hypo Symptom Recognition #1068455

Some of the symptoms you may not think of, but that can really help you decide to get tested, are dry skin & hair, difficulty getting out of bed in the morning (not just lethargy, but feeling as if it’s just impossible to move your body), increased loss of hair (still nothing spectacular, but more than usual), and the one I really noticed, which was complete apathy. It was really weird to change into this completely "so what" kind of person ~ that’s one of my best markers. I do like to describe myself as somewhat "Zen," but it’s different being apathetic ~ couldn’t care less if things go well, or badly, or go at all, just can’t be bothered. That’s a definite hypo symptom. I also noticed that when I was hyper, ideas zoomed in and out of my head with me only barely recognizing they were there. When I was hyPO, you couldn’t pay me to come up with an idea. That may be a helpful thing to look for as well.

I understand your hesitation to follow the "classic" symptom list, because compared to hyper, almost anything feels "less." I went through about six months of getting tested every five minutes, CERTAIN I’d slipped into hypo, and ~ NOT. If you can strike some balance with that, congratulations. It’s a tough time, I completely understand.

[Ski]

in reply to: Questions and more Questions #1068459

The antibodies that attack the thyroid just have nothing to do after the thyroid is gone, FYI. Antibodies have a kind of "lock and key" relationship to the things they fight, and so nothing else can be affected by those specific antibodies once their target has been removed. The antibodies that cause TED (thyroid eye disease) and pretibial myxedema are related to the Graves’ thyroid antibodies, but they are different. At our last conference, they suggested that they may begin to refer to Graves’ as a "syndrome" rather than a single "disease" for just that reason.

These "spells" of yours do sound scary, and several times a day at that ~ I would make sure you call the doctor’s office and ask to have someone in authority respond immediately. It may be a good idea to get checked out, just to make sure you’re okay.

[Ski]

in reply to: weight gain #1068464

There are several elements that play into the weight gain, but I want to make note of the fact that it is *not* the meds ~ it just feels that way because you start taking the meds, and the weight comes on. The fact is that it’s a function of getting well, and we need to understand why it happens so we can minimize it ~ and also accept it, JUST for a little while, until our thyroid hormone levels are normal and stable.

When we are hyperthyroid, we lose muscle mass in our largest muscles (upper arms, upper legs, chest and back), which is weight loss, but is BAD weight loss. Muscle mass helps our body burn up calories, even while we’re sitting still, so in losing muscle mass, we also lose the ability to burn as many calories as we used to. That’s while we’re hyperthyroid. Then we take meds to bring our thyroid hormone levels back into normal range, and not only have we got that loss of muscle mass, we’ve also got a lowered metabolism to deal with ~ even if we’ve only been hyper a short time, it’s easy to get used to a body that can eat as much as it wants and keep losing, so after that metabolism comes down, again, we’re at a disadvantage.

The muscle mass begins to return as we get our thyroid hormone levels under control, but it’s "baby" muscle, and it needs to be carefully toned and strengthened to return to the state it was in before you lost it. Bobbi had to begin doing arm lifts with two thin paperback books in order to bring the strength back and not hurt herself.

You’d be well advised to go see a physical therapist. Have your strength and stamina evaluated, and come up with a plan to return your body to its former health ~ safely. It will go far in helping you control your weight. In the meantime, keep doing what you’re doing ~ eat healthy, no wasted calories, and do whatever exercise you are COMFORTABLE with (no pushing yourself, you’ll pay too dearly). If you must, go to the local Goodwill and pick up some nice clothes that fit your "current" body, so you’re not straining at the waistline everytime you need to move your body. Believe it or not, that will encourage you to MOVE, and that will help bring the weight down as well.

[Ski]

in reply to: Does age impact ATD’s? #1068560

It’s hard to know ~ it’s possible that you didn’t have it long, and the ATDs have brought you quickly under control, which would mean that you spent very little time being hyper, and you’d have less "trauma" getting back to normal. If you experience a spike of hyperthyroidism (it can be triggered by other stress events), you may have a surprise, but maybe not. It’s also possible that some of the classic symptoms have worked their way into you thinking "that’s just how I am," but either way, if you’re feeling good now, REJOICE. ” title=”Very Happy” />

[Ski]

in reply to: Gutted and fed up :( #1068483

Oh dear, you really do get everything in its worst form, don’t you? I’m SO sorry this has been such a tough road! The vocal cord damage is a tough one, something you just have to endure I guess, get used to it and, as you say, be grateful that you’re here for them, no matter how you sound. I hope it’s not TOO bad, and I really hope that some improvement MAY occur….

As far as the dose change, the theory is always to start low and go slow ~ it’s tough on the body to make radical shifts in thyroid hormone, even when you may need to have it, so it’s best to just move up one dose at a time and make sure the body "settles in" before going with more.

HANG IN!!!

[Ski]

in reply to: Would you switch docs? #1068524

This is all very good advice ~ I just wanted to jump in and say that, in my experience, endocrinologists are the busiest doctors I have ever met. I don’t believe I’ve known one that wasn’t always backed up with appointments. If you can find one who at least acknowledges the problem and assures you that they are doing everything in their power to avoid these kinds of delays, that may be the best you can do.

It’s a really great suggestion to find one that engages in e-mail consultations ~ that can save everyone a lot of time and headache. If the entire appointment boils down to a glance at your last bloodwork and a prescription change up or down a dose level, it would seem an incredible waste of time for everybody, doctor included. E-mail could really solve some issues.

Also, if you need to travel a little bit to get another endo, it may be worth it if you at least feel your time is valued. Check with the office staff before deciding upon going to another doctor ~ the receptionists can give you a general idea of the backup in the waiting room, and the most senior nurse can probably give some insight into how the doctor works, in general (as in, does the doctor operate as a team member with patients, or as "boss of you" ~ important distinction).

[Ski]

in reply to: Need Help!! #1068506

In many ways, what she’s experiencing is CHEMICAL, so try and keep that thought in mind ~ it’s not that she’s just "let her thoughts get the best of her," she is truly, chemically imbalanced in her brain right now. Talk therapy is not likely to break through this. ONLY getting her thyroid hormone levels back in line will TRULY help, though anti-anxiety meds can assist in the meantime. The complication there is that you need to find the one that works best for her, AND you need to wait for it to build up and become effective, so there is no magic wand we can wave and have her feel better *snap* NOW.

Taking some of the pressure off is likely to help some, so no matter what it "costs," it’s worth getting some help for her right now, in terms of caring for your child.

And one last thought ~ if she were truly in thyroid storm, you’d be calling 911. These symptoms are scary, but you would DEFINITELY know the difference if she were in storm.

[Ski]

in reply to: My 11 year old daughter just diagnosed! #1068641

Sure ~ ATDs are the anti-thyroid drugs, in the U.S. either methimazole (which is generic for Tapazole) or PTU (which is short for Propylthiouracil). These both act to reduce thyroid hormone, in slightly different ways. Both carry some risk of side effects, which you should take a look at, and PTU has recently been removed from the "preferred" list for children, so that would be something to talk with the doctor about.

[Ski]

in reply to: GD and Genetics…do we really know yet? #1068545

There is no test for the genetic defect as of yet, it’s all too new. Bottom line, if you know that a blood relative has (or had) an autoimmune disease, it runs in your family. If it runs in your family, then your children have the potential. It’s really that simple.

[Ski]

in reply to: How is dianne the facilitator doing? #1068532

So nice of you to ask! Dianne says she had other health issues besides eye surgeries, a lot of house guests, and rose care in the summer ~ even now, she’s still awaiting the "real" eye surgery (three pre-procedures have been necessary, two completed), and she’s heading out of state again for a family visit right this minute. She’ll be in Charlotte for the conference, so YAY!!! ” title=”Cool” />

[Ski]

in reply to: Grand mal seizure #1068528

I’ve never seen anything that connected the two in a conventional sense, but the fact is that hyperthyroidism affects every single cell in the body, and perhaps, in YOU, that’s a weakness it’s exploited. Definitely a good discussion for you and your doctor to have, because you want to treat this effectively and get it RESOLVED.

[Ski]

in reply to: GD and Genetics…do we really know yet? #1068542

What we do know as of now is that there is a genetic component to having autoimmune diseases, at least. While there may be future discoveries that focus the genetic component to thyroid disease in specific, for now we know that families pass along the potential for autoimmune diseases. Therefore, if you know family members with autoimmune diabetes, or lupus, or rheumatoid arthritis, or any other autoimmune disease, that’s part of your genetic connection.

Bringing this up to your children’s doctor is a good idea, however, without knowledge of every single autoimmune disease, it’s a little bit of a challenge to be proactive on all fronts. Still, knowing the potential exists can help to focus a search, once problems have arisen.

We can keep an eye on our kids for symptoms of Graves’, and once they’ve grown to be adults, they can probably keep a good eye out for the symptoms themselves.

At last October’s conference the doctor revealed that a genetic defect has been located that every autoimmune patient has. Not everyone with the defect has an autoimmune disease, but 100% of autoimmune patients have the defect, suggesting that it is THE genetic link, and those with the defect simply have not YET contracted "their" autoimmune disease ~ or they may never have one. But the research is coming along, if that helps you to know.

[Ski]

in reply to: My 11 year old daughter just diagnosed! #1068639

Fitting in is SO important at 13 ~ we can forget how critical that seems to one so young, but it can truly feel like the world is crashing down when there’s no control, and she feels "different." I wish we could wave a magic wand and help her avoid all of these symptoms. I would agree with your hesitation to break the news about what exactly the doctor is testing for ~ the "what if" element can be really frightening, and it would make sense to just tell her the doctor needs more information, and cross the bridge of "what IS" if it really IS.

ATDs can be extremely tough to use to manage levels, and it takes an incredible vigilance over lifestyle habits, as well as compliance with the meds, and fairly regular blood tests. While it may seem "extreme" to remove the gland, it is a perfectly viable option and *MAY* return your daughter’s health faster, just because it requires less action on her part. Typically the scarring is VERY minimal with surgery, and the surgeon aims for a "natural fold" in the neck to minimize the appearance even more.

You sound as if you have a very good idea of where your daughter stands with this, so I would recommend that heart-to-heart discussion, pointing out CLEARLY that you feel she may be grasping for something just because SHE thinks it’s the fastest, without having thought through everything. Everything takes a little while, nothing is instantaneous, and all treatments require SOME action on her part, so try to calm her and get a real discussion going. Hopefully you’ll come away with a decision you both like.

[Ski]

in reply to: GD Symptoms Suddenly Worse #1068571

Liver issues take two forms, when people are on ATDs.

First, elevated liver enzymes as a patient first starts to take ATDs can indicate a difficulty tolerating the medication, and usually patients are instructed to stop taking the ATDs. You are obviously not one of those patients.

Secondarily, we need to consider the overall toxicity in the liver over time, which is gradual. Damage may not appear in any obvious way until the patient is literally on the meds for years and years and years.

Every chemical drug we take in our lifetime is processed through the liver, and leaves some residue behind as it is processed (though I should point out that thyroid hormone is different, since it is identical to that which our thyroid produces naturally, and so no toxicity builds up). Thus the issue becomes, how many chemicals does our body process regularly? We have to factor in things like blood pressure medicine, anti-inflammatories, etc. etc., and we also need to consider the fact that as we age, two things happen. First, we typically end up on more medications, and second, our liver loses the ability to efficiently process these chemicals. In addition to that, the overall lifetime toxicity plays into the liver’s ability to function properly.

So while you may or may not get answers about patients experiencing toxicity, these are the things to consider when you’re looking at long-term ATDs. On a small enough dose, perhaps the risk is so small as to be inconsequential to you. This is a very good discussion to have with your doctor. They probably have a good overall view as to what their own patients have experienced, and they may have some idea of your likelihood of future issues, based on your medical history.

Finally, it is rather common for Graves’ patients to experience thyroid failure earlier in life than "average," so the possibility exists that remaining balanced on a very low level of ATDs would just keep you at normal levels until the thyroid burns out naturally, removing the need to do either of the other treatments.

Same as everything with Graves’, balance the information and come up with the answer you feel is right FOR YOU. ” title=”Very Happy” />

[Ski]

in reply to: Does TSH matter for people without thyroid? #1068567

TSH definitely matters for people without a thyroid ~ the feedback mechanism is very important for determining our proper hormone replacement dose.

If your TSH levels are below normal, then it’s time to figure out the cause. It’s possible that your pituitary has its own separate issue, so that should be investigated. It’s also possible that your T3/T4 levels are not right FOR YOU (within the normal range is not enough), so consult with your doctor at length about this. I experienced a period of time where I was "subclinically hyperthyroid," with exactly the same blood test results as you are seeing now, and I can tell you that I felt a THOUSAND times better once those levels were correct and balanced.

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