[Ski]

in reply to: TED Triggers? #1074882

Thanks Lynne,

For letting us know that we help. ” title=”Very Happy” /> I’m so glad you have found relief, physically and emotionally!!!

[Ski]

in reply to: TED Triggers? #1074880

Hi Amanda,

We are not extremely clear on triggers for TED ~ as with all autoimmune diseases, stress seems to play a part, but nothing is completely proven.

As far as trauma to the eye triggering an escalation of TED symptoms, that is known ~ the difference is that people with active TED can experience an escalation in symptoms after surgery, but people without TED don’t typically begin to have the disease after eye surgery.

That may just be semantics for Graves’ patients, because doctors have found that ALL Graves’ patients have some level of TED symptoms (tested post-mortem), whether we notice them or not.

The good news is that only a tiny percentage of TED patients end up with symptoms that require surgical correction down the line. For the most part, we suffer a period of symptoms that dissipate over time, and for the most part, the symptoms are mild. Let us know how things work out for you ~ your case is interesting.

[Ski]

in reply to: Graves and Stomach Issues? #1074897

I’ve been on this board since early 1998, and I have not heard anyone bring up escalating stomach issues following RAI. Sometimes they talk about being a little nauseous in the first couple of weeks, but not anything like you describe. The fact that you have been diagnosed with another autoimmune disease is telling, however ~ we are slightly more likely to acquire a second autoimmune disease, once we have one. No one has good information on why we get the particular autoimmune diseases we end up with ~ the theory is that we have certain "weak points" in our body (for whatever reason), so the autoimmune diseases are more likely to target those weak points.

Sounds miserable, I really hope there is an effective treatment for your new condition!

[Ski]

in reply to: Graves Eye Disease #1075496

Hi Lyn,

There are two ways our eyes can be affected by TED (thyroid eye disease, or Graves’ eye disease, same thing). Either the muscles can swell, or the fat behind the orbit can expand. In either case, in some people the result is that the eyes are pushed forward, out of the orbital cavity, and in some people, the result is that the fat from behind the eyes is pushed forward into the tissues around the eye, causing swelling as you describe. In some people there is a combination of these effects going on.

My first symptom (well, the first one that sent me to the doctor) was puffy eyes, over my eyes. The puffiness can be exhibited anywhere around the eyes.

An ophthalmologist is really the best one to judge whether your situation is mild or severe. It always seems severe when it’s your eyes, but the doctor’s perspective is valuable. In MOST cases, TED is left alone, and we wait and see what happens as time goes by. Having a baseline appointment gives the ophthalmologist a reference point to figure out how severe your changes are. I would ask for a referral, if it were me. It’s good to have that first appointment behind you, and also a resource in case changes begin to happen rapidly.

During this time, you may benefit from raising the head of your bed. It works better than stacks of pillows because you don’t have a specific stress point at the "bend" as you lay on the stack, plus you can’t roll off and end up level again. It helps the fluid to NOT collect around the eyes while you sleep. My husband put pieces of a 4×4 under the feet at the head of the bed. It’s a little odd, but in the end it helped my eyes and it also helped his middle-of-the-night indigestion.

I hope this helps some!

[Ski]

in reply to: Surgery #1074924

Each of the options for treatment has its advantages, its disadvantages, and its potential complications. No one here can tell you what is the right treatment for you, but I can tell you that none of the treatments are 100% perfect (else we would cease to have a choice).

The fact is that thyroidectomies have been done for MANY MANY years, and in the hands of an experienced surgeon, all the potential complications should be minimized. If you have asked your surgeon for their personal complication rate, you will have a good idea of the odds that any of the complications will happen to you.

If you need to do this in order to be completely comfortable with your choice, make yourself a pro/con chart with the treatment options you are considering, and take a good, long look at it. That may help you to put things in perspective and feel completely comfortable with your choice.

I’m sure others will write with their thyroidectomy experiences ~ I didn’t go that route, so I can’t give you any info from my personal experience. I can tell you that everyone I have spoken to about their surgery has been very satisfied.

The fact that the hospital is warning you about possible complications is a good sign ~ it means they are prepared and fully aware of what may happen, and they want you to be aware as well, so that you can participate in keeping yourself safe during your recovery.

[Ski]

in reply to: Graves and Weight… #1074935

The rapid heart rate is due to being hyperthyroid, so that will ease up once you are no longer hyperthyroid. The beta blockers won’t be needed after that, but you do need to wean yourself from beta blockers ~ typically we take a VERY small dose to keep our heart rate regulated while hyper, so the weaning process will probably last less than 2 weeks, but you need to do it a little at a time (from one pill a day to one every other day, for instance) rather than all at once. Follow your doctor’s instructions.

About the weight ~ take a good, long read at Bobbi’s post and it will help to put ALL of that into perspective.

As you say, any weight gain is preferable to being hyperthyroid. Hyperthyroidism kills. Gaining weight is inconvenient. BOTH can be controlled effectively. You can look forward to much more normal weight issues once your thyroid is regulated. Keeping a good handle on your diet and doing whatever exercise you are allowed will keep you in the best possible condition, so that when your levels normalize, you have far less work to do to get back to where you’d like to be. In the meantime, it’s wise to buy clothes for yourself that are not only the right size, but even a little larger ~ give yourself more space so you are comfortable enough to MOVE when the mood strikes you, and also so you do not grouse each time your beltline gets tight. That’s stress too.

[Ski]

in reply to: New Thearpy News…… #1074940

Hi Mickey,

The story about your friend actually sounds more like she did not have enough of an RAI dose at first in order to completely kill off her thyroid, and each subsequent dose was yet again too small. More likely than having the thyroid grow back is that the thyroid tissue was not completely killed off with the first dose, because then the antibodies could attack the remaining active tissue and force it to release an enormous amount of hormone that rendered your friend hyperthyroid again.

I say this only to point out that she was probably ill not because she had multiple doses, but because all of them were too small, and tissue remained that reacted to the antibodies, ultimately producing a storm condition [which, even under these circumstances, is very rare ~ I feel that is also necessary to point out]. There is a small contingent of doctors who believe they can give you "just enough" RAI to make you normal. In the end, the doctors we’ve spoken to at the most recent conference agree that there is no such thing, specifically because of the scenario I mention above. With any active thyroid tissue, it is possible to create a reaction from the antibodies in which the patient becomes hyperthyroid again. For that reason, most doctors will now recommend a large enough RAI dose to ensure complete destruction. If you have completely destroyed the thyroid with the RAI, it can’t react any more.

I have gone through this myself ~ my endo and I believed in total ablation, but the dosing radiologist thought differently, and never asked either one of us before choosing the dose I received. Had I received a large enough dose at first, I would have been spared many years of trying to get back to normal again.

[Ski]

in reply to: New Thearpy News…… #1074938

Just one thing about whether you still have Graves’ after surgery. At our most recent conference, the doctor said that they are starting to refer to Graves’ as a syndrome, rather than a disease, because it encompasses several conditions. You are treating the thyroid issue, but you are still at risk for the eye disease (thyroid eye disease, we refer to it as TED) and also for pretibial myxedema (PTM), which is a very rare rash on the shins and/or swelling in the tissues of the foot.

Hyperthyroidism is the most dangerous condition of the three, and surgery will treat the hyperthyroidism. The others may or may not occur, no matter how you treat the thyroid, they could occur at any time (now or later), and they require separate treatment by other medical professionals (ophthalmologist for TED, dermatologist for PTM). Since they are autoimmune conditions as well, you may be able to reduce symptoms by reducing your stress levels. Stress stimulates the immune system, which (for most people) is a good thing because it helps your body fight disease that may come on during stressful times. For us, it can escalate symptoms, so we need to be careful about stress and also about taking substances that purport to "boost the immune system." Once your thyroid is gone, the thyroid antibodies can’t affect your thyroid hormone levels, but the antibodies that go with the other two conditions could still affect you.

[Ski]

in reply to: Symptoms of Graves in Children? #1074980

If you want to get your child tested, and you do NOT believe there is much chance that Graves’ is what’s going on, then the recommendation would be to ask your doctor to "check the box" for a TSH test when they’re already going to be drawing blood for something else.

As far as symptoms in children, they’re pretty much the same as for adults. If you see four or five of the more prominent symptoms represented in your child (always feeling hot, difficulty sleeping, tremors, frequent/loose bowel movements, for example), then that would be the time to test just for thyroid.

It’s a good time to check in with the pediatrician about the other issues she’s experiencing anyway, and perhaps that will result in a blood test so you can be sure.

Graves’ is not directly genetically inherited ~ what we inherit is a predisposition to some type of autoimmune disease. It’s possible that in our children, it could show up as other autoimmune diseases, so it’s something you should all be aware of, going forward. This will be an important piece of their medical history.

[Ski]

in reply to: My son has Graves and we have questions #1075346

Hi elf,

GD in children is extremely rare, but it does happen (I guess that’s obvious….).

The experts that I’ve heard have only said that it’s more common in older patients, I haven’t heard any opinions about specific things that might make a child more "at risk" than another. I think we see a really high percentage of the child patients represented here, probably because it IS so rare, and there are very few places to go for information.

The standard theory for cause of GD is that a patient has a predetermined likelihood for autoimmune disease, then some environmental trigger (stress or something else) combines with a bodily weakness to bring on the disease. This is NOT proven, but it is the best idea currently. They have identified a specific defect in autoimmune patients ~ it is VERY early in the evaluation of that information. The defect can be found in some people without autoimmune diseases, but it is found in 100% of autoimmune disease patients. The process by which our body goes from having the defect with no disease, to having the defect AND a disease, is the process that is currently being researched.

The predetermined likelihood for autoimmune disease IS genetic.

As far as the other factors (diet, environment), nothing is known for certain at this time.

[Ski]

in reply to: Having a really bad day……please help #1075033

I’m so sorry you had to go through that. It does make it easier to put things into perspective, doesn’t it? Please let us know how your healing process goes, you’ve certainly got a good attitude to begin with. ” title=”Very Happy” />

[Ski]

in reply to: Graves Eye Disease #1075492

Responding to Cathy’s comment:

I have read botox can be effective in reducing the bags left by Graves. (Anyone have any info on this).

I went running for my notes from October’s conference because I remembered Botox being mentioned. What I found was that they did not refer to it as help for the bags left by TED. The only mention of it at the conference was as a possible help for double vision (they can "freeze" the eye muscles to keep them from pulling the eye the wrong way).

The bags are a separate issue, best handled last, because they MAY go down on their own as you heal. You don’t want to overcorrect.

In addition ~ Preparation H does NOT solve the puffy undereyes we get from Graves’. Typically ours is caused by fat being "pushed" out into the tissues surrounding our eyes, and Prep H can’t solve that (before I knew what was wrong, I DID try Prep H ~ It did not help). There’s not really much you can do ~ raising the head of your bed helps some (it’s what helped me most).

[Ski]

in reply to: Having a really bad day……please help #1075027

Hi again Hopeful,

I hope you didn’t interpret the past few posts to be in some way diminishing your own situation ~ everyone has a different road to walk, and yours has had many bumps (lack of a diagnosis being especially debilitating), plus you are still struggling to figure out which road to take next. It is overwhelming, and in the face of so much loss, naturally you’ll have bad days. And we’re here to help, so I apologize if you felt that we may be saying "pull yourself up by your bootstraps and get over it." ” title=”Very Happy” /> I don’t think that was intended by anyone. We went off on a tangent, a little. ” title=”Wink” />

The real message is to take good care of YOU first. There’s no need to apologize for having a bad day, or reacting to it. Sometimes you need to laugh, other times you need to cry, and occasionally you just need to think as you gaze out your window with a tasty hot beverage in hand. Do let us know when your days get really tough. We’re here to support you and help you through ~ to remind you that things will get better, because we’ve been there too, and we’ve made it. You will too. In the meantime, be kind to yourself.

[Ski]

in reply to: Having a really bad day……please help #1075022

Hi Mickey,

Nothing to apologize for! ” title=”Very Happy” /> Some people deal better with things than others do, that’s just a fact of life. Emotional issues are not a given, but they are common, and they are definitely exacerbated by previous conditions, by separate stressors, by a sense of denial and fear of the unknown, etc. etc. etc. There is also the chemical component to the changes we undergo while hyperthyroid. You’ve gotten the help that you need, you understand what’s going on, that all helps, and a generally good attitude serves one well. For those that need assistance, there are options. That’s all we’re saying.

[Ski]

in reply to: How many are like me? #1075124

Hi Mickey,

Armour is generated from pig thyroid tissue, and so is thought by some to contain more of the elements we miss without our thyroid. One thing for certain is that it contains a bit of T3, the active form of the thyroid hormone (which our body typically generates FROM T4, the main component in our replacement), and in some cases that is helpful for patients. In other patients, they experience sensitivity to the T3 over time, so it doesn’t work so well for them. In most cases, our body is just fine at converting T4 to T3, but in some patients ~ such as those who may have liver dysfunction from other sources ~ a T3 supplement can put everything in balance. It’s something you may want to discuss with your doctor right away, before you begin taking one or the other. It is a fairly long process, "dialing in" your own personal "correct" thyroid hormone level, and replacements are NOT the same (generics vs. brand vs. Armour, for instance), so you can’t say that a particular dose of one is exactly equivalent to that same dose of another, that your body would end up at the same thyroid hormone level as a result. For that reason, it is not recommended that we switch brands, unless we are experiencing some sort of reaction to the elements of the pill that are "filler" (we could not be allergic to the thyroid hormone itself, it’s simply not possible), so picking one over the other right away is a good idea. At least find out what your doctor’s recommendation is, and why.

One thing ~ you may not be going on replacement hormone so quickly. You may not have slid into hypothyroidism yet. It can take a while ~ usually at least six weeks before the excess thyroid hormone is even completely out of your bloodstream, and then you may begin to see your overall levels change, but probably not before your next appointment, in all likelihood.

We’re glad you found us! Welcome. ” title=”Very Happy” />

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