[Bobbi]

in reply to: Graves Eye Disease #1075494

The issue with the "bags" under the eyes, when we have TED is different from the issue caused by getting a cold, not getting enough sleep, etc. The soft tissue isn’t swelling so much as it is being pushed forward by the enlargement of the muscles in the eyes. That is why it typically does not help much to use the usual types of beauty preparations that are supposed to reduce puffiness.

[Bobbi]

in reply to: A good Grave’s diet? #1074991

When Nancy talks about a good Graves’ diet, what she means is simply a reasonable, good BALANCED diet. Eating vegetables and fruits and meats and carbs in proper proportions. Our bodies have taken a beating. We need good, nutritious food because our body has taken a beating. Fruits and veggies provide good, dense nutrition (i.e. a lot of nutrition, without a lot of calories). Also, do not skip meals — your metabolism is messed up enough without skipping meals. Watch your portions. If you look at the Jenny Craig type diets, or the Weight Watcher diets, you are allowed to eat all types of good foods, but the portions may be smaller than you are used to eating. And snacks are allowed: but again the portions are controlled (and there are few, if any "empty" calorie foods).

The prohibition of sushi and fish probably no longer applies, since you have had RAI — but check with your doctor first. There may be some other reason (than scan issues) for that advice, and you need to be sure you know what it is.

[Bobbi]

in reply to: new to the disease, and still lost #1075073

There’s no way of knowing, IrishPoet, whether or not hyperthyroidism caused the situation with the birth of your daughter 7 years ago. Eclampsia causes skyrocketing BP during birth events, too. And there may be other conditions that do it, as well — I’m not medically trained. The body is hugely complicated and one of the reasons why some of us had trouble getting diagnosed properly is due to the fact that the symptoms of many diseases can overlap. And, if your daughter had the normal contingent of blood tests after her birth, they would have spotted hyperthyroidism, I think. I’m not sure, but I think newborns are monitored for hypOthyroidism. The hypo condition in newborns can lead to mental retardation. The retardation is preventable if caught sufficiently early. It would make sense for that to be one of the standard tests on newborns.

The genetic issue is more complicated than just Graves. One family member could have Graves and another Hashimotos. Also, the "purpose" of the antithyroid antibodies is to get rid of thyroid cells, so all of us could anticipate going hypothyroid over time.

[Bobbi]

in reply to: Hashimoto’s mistaken for Graves? #1075005

Some of us have the antibodies for both Hashimotos and Graves autoimmune diseases. There can then be fluctuations between hypo and hyper conditions at different points in time. Both are disease conditions, and your thyroid is permanently diseased. The standard treatment for someone with this condition is to treat the hyper end of things first. Why? Because the hypo conditions (whether caused by the antibodies, or caused by removing thyroid tissue) get exactly the same treatment. If you only treat the hypo end of things, you would be subject to swings into hyper from time to time, which has really bad long-term consequences for your health, not to speak of the awful effect of hormonal seesaws. So they eliminate the hyper swings and simply treat the hypo.

Bobbi

[Bobbi]

in reply to: How many are like me? #1075122

Hi, Mickey65, and welcome to our Board.

Just fyi — you might experience a sore throat in the next few days. And, in about a week, there may be an increase in hyperthyroid symptoms. This is a normal result of damaged thyroid cells dumping their stored supplies of hormone into the body. They are no longer making "new" hormone, so this extra period of hyperness usually does not last longer than a few days.

I hope you are feeling much better soon.

[Bobbi]

in reply to: New member #1075009

Hindsight is wonderful. But, please, stop beating yourself up about the ski trip. Unless you are a doctor, there is absolutely no way for you to have known. And, inasmuch as your sister is an adult, she shares responsibility in the decision to stay in the mountains rather than come home. But she isn’t to blame, either. The truth is, many doctors misdiagnose Graves in its early stages. Mine did. So, even if you had taken her to a clinic in the ski resort, it might have made no difference. And, it is very likely that had you not gone on that trip, her disease would have continued undiagnosed for a while longer.

The good news is that there is now a diagnosis, and the treatments work to make us well again. It takes time to undo the damage done by excessive levels of thyroid hormone, but we do get well again.

And you should be forewarned. Autoimmune thyroid issues run in families. You might not develop any thyroid disease, but your risk is slightly higher than normal now that your sister has shown up with Graves. It could be either Graves or it could be Hashimotos (autoimmune hypothyroidism). Tell your primary care doctor so that the issue can be entered into your medical/family history. And make sure that when routine blood work is requested (during annual exams), that thyroid function is one of the issues being checked. If thyroid disease is caught early enough, the bad side issues (muscle loss, bone loss, etc.) can be avoided.

Wishing you and your sister well,

[Bobbi]

in reply to: New member wanting to say thanks #1075013

Thanks, Melinda. And welcome to our board.

[Bobbi]

in reply to: Anyone else have a cyclical case of Grave’s Disease? #1075038

I noticed a comment in the last part of your post, Joe, to which I will respond: the only thing that any of our treatments do is help to control levels of thyroid hormone in the body. None of the treatment options work on the antibodies that are the cause of the disease.

So, the PTU does not inhibit the production of antithyroid antibodies. PTU does have a potential adverse side effect of lowering the white blood cell count, which is a very dangerous side effect. But the antibodies are not involved. While on PTU you should expect to have normal levels of thyroid hormone. That is what the drug is designed to do: interfere enough with the production of thyroid hormone just enough to control our levels in the normal zone.

As for a "cyclical" case of Graves — antibody levels can rise or fall for no well-understood reason. When antibody levels fall, we can be symptom free for a while. But they will inevitably rise again at some point in time, so we need to be vigilant. So, the disease isn’t "cyclical" but it can wax and wane. If you have Graves, it is forever. It is treatable, but it is definitely not something you should ignore, or pretend isn’t there.

[Bobbi]

in reply to: Having a really bad day……please help #1075019

Perhaps you have collected some bad info somewhere about PTU. I am unaware of an issue with brain swelling. The only issue that I know of regarding liver function is that due to the fact that it is metabolized in the liver (as are many, if not most, drugs), it can adversely affect the liver. Typically, our doctors look at liver enzymes in blood tests from time to time to make sure that that is not occurring. If it is, stopping the PTU at that point usually stops the problem. You can help things along by not using alcoholic beverages (they’re tough on the liver) or other non-prescription drugs that are known to be hard on the liver. The main other problem with the drug is that it can, in extremely rare circumstances cause a serious lowering of the white cell count. This would make us vulnerable to infection. Again, most of our doctors run a cell count test with blood work from time to time. If we turn up with a bad sore throat, or other infection, we are advised to see our doctor right away so that such a blood test can be given. Again, if the drug is stopped, the problem usually goes away.

What concerns me is that you have lowered your dose of PTU both due to nausea, and due to your fears. The problem with this is that insufficiently treating the hyperthyroidism isn’t good for you: it is easily as bad, and possibly even worse, than anything the PTU is likely to do to you. Even minor levels of hyperthyroidism leach bone from the body, and destroy muscle over time. If you cannot take the prescribed — and necessary — dose of PTU without problems, you need to talk with your doctor about 1) the other ATD, methimazole or 2) removing your thyroid (via surgery or RAI) and going on replacement hormone.

I do understand your fears, and my heart goes out to you. In the first weeks of treatment, I still felt horrid too. But it does get better with proper treatment, and we can get well again.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Update with questions????? #1075053

While I understand that a healthy thyroid produces more varied types of hormone structures, plus calcitonin, than the replacement hormone provides, the bottom line is not a comparison between a healthy thyroid and the replacement hormone. We no longer have healthy thyroids.

When you have autoimmune Graves disease, your thyroid is permanently diseased, and is capable of killing you unless you can bring it under control. Many patients can use ATDs relatively safely; and in many patients, they can control the levels of thyroid hormone in our blood. But not for all patients. And, there are some significant potential side effect issues with ATDs that may make them less suitable for extremely long-term use. For long term use, there is a legitimate argument that replacement hormone is safer, even in patients who tolerate the ATDs initially well. It is a judgment call. But in no way is going to replacement hormone "inferior" because it does not include calcitonin, etc.

The calcitonin issue comes up from time to time. While calcitonin participates in calcium and phosphorus metabolism the physiological significance of it in humans is questionable. It could very well be a vestige — like the appendix. There are, for example, no known metabolic consequences of either calcitonin deficiency, or excess. Let me be clear: while excessive levels of calcitonin may be a warning sign for certain types of diseases (like medullary thyroid cancer, or renal failure) having too much of it is not known to cause a diseased condition. Ditto too little of it. "Saving" your thyroid, therefore, in order to protect the production of calcitonin in the parafollicular cells may not be a good idea, particularly if your ATDs are giving you side effect issues, or are not controlling your thyroid hormone levels well. Even thyroid cancer patients who (unlike us) have every last bit of thyroid cell destroyed via surgery and RAI, can live well without their thyroids.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: How many are like me? #1075118

Actually, joe is not completely correct. While it is important to listen to your body, you cannot rely on your interpretation of how you feel to dictate your treatment. AT some point in time, objective facts have to carry the most influence. The TSH results are crucial for determining whether or not you are hyperthyroid. And the TSH moves very slowly over time: the TSH is like a "running average." Actual levels of thyroid can fluctuate like mad: the TSH is the "steady Eddy." And it has been demonstrated over time that even minor levels (perhaps the technical term is "subclinical") of excessive thyroid hormone provide a serious threat to long-term health.

Bobbi –NGDF Online Facilitator

[Bobbi]

in reply to: So many questions #1075079

You mentioned that you feel you are getting good care from your endo, but you have doubts. I think those doubts may have been planted by the comments of your GP. You entered into your relationship with your endo already anticipating bad results. And that might not necessarily be reasonable. Your GP might have very good medical reasons for the comments. But another possibility is that your GP wanted to be an endo, but could not pass the exams to be accepted into the program. Or thinks endos are stuck up… There could be lots of reasons for the comment, not just the medical expertise.

So, the hard part is going to be you figuring out if your endo is indeed a good one. So, I’ll make some comments.

Most endocrinologists do not treat many Graves patients simply because there are not many Graves patients in any given general population. So, it does not mean an endo isn’t qualified to treat Graves. There are lots more diabetics in the population. Most endos are going to have lots more diabetics in there case load than thyroid patients.

Most endos do indeed pooh pooh our symptoms in one way or another. I have a terrific endo, and even I have heard the words "It’s not your thyroid." Or I got a pep talk when I was feeling like dirty dish water. The main thing we have to work to achieve is a relationship with our endos that has open hearing on both ends (the doctor side and our side). And it takes time and cooperation. Does your endo listen to your comments and consider them? (And, conversely, do you listen to the endo and consider the comments?) Yes, we have symptoms. The problem is that they are, unfortunately, often "subjective" rather than "objective." Subjective symptoms are "I feel so tired." Or, "I feel like I’m brain dead." These symptoms are real, but are not something the endo can "measure" or accurately observe. Objective symptoms are "my heart rate is 120 while I’m lying in bed." We patients expect our endos to treat our subjective symptoms with the same degree of attention and sympathy with which they treat our objective symptoms (blood test results, heart rate, etc.). They very often do not. They are trained as "scientists" rather than "counselors," if you will. If they see that our blood levels of hormone are in the right general spot, that is their main concern.

The other problem is that sometimes we absolutely insist that a symptom is caused by thyroid issues, and sometimes they can be caused by something else entirely. This is where the "listening to one another" comes in. For example, I was told I was fine, but I felt truly awful while on PTU. No objective symptoms — completely subjective ones. I was fatigued; I could not keep a single thought in my head for longer than about 10 seconds; or, I could not reason through something without difficulty. It felt like my brain had turned to molasses. I ultimately decided that it was a reaction to the drug, and went ahead and had RAI. People here told me that I was wrong, wrong, wrong — that it was not the drug, but I never had the problem once I stopped the drug. So, while there are LOTS of people who can take PTU or methimazole just fine, I was not one of them. There can be adverse reactions to one or more of the drugs you are on. Or — again an illustration from my case — I just felt "off" for months and months, with bouts of indigestion. Come to find out, I had developed gall bladder disease as a result of losing too much weight too fast. As soon as I had my gall bladder out, I was absolutely amazed at how much better I felt. So, just because you have Graves does not mean that every symptom is actually being caused by the thyroid issues. We patients need to keep an open mind about subjective symptoms and develop a relationship with the doctor that allows the doctor to explore other possibilities with us. If the doctor says "It’s not your thyroid," it may well not be your thyroid. But we often have to ask the follow-up question: "OK, then, what IS it???"

I just thought I would throw these additional comments in for you to think about. I hope you are feeling much better, soon.
Bobbi — Online Facilitator

[Bobbi]

in reply to: Update with questions????? #1075048

James made very good points about the ATDs. I would just like to add a comment to emphasize his point. The ATDs do not cause remission. They keep thyroid hormone levels normal (hopefully) until your antibody levels lower sufficiently for you to be able to go off medication and maintain normal thyroid hormone levels for a year or more. Antibody levels rise and fall for no well-understood reason. None of the treatment options we have control antibody levels. They only control thyroid levels.

Bobbi — Online Facilitator

[Bobbi]

in reply to: new to the disease, and still lost #1075071

You asked about pregnancy issues: Before you even think about getting pregnant, you need to get your health straightened out. Pregnancy puts added stress and strain on the body, and thyroid being out of kilter can adversely affect things.

But, once you are healthy, if you get pregnant: we are considered riskier than normal for pregnancy simply because our thyroid levels must be "manually" monitored. The demands by the body for thyroid hormone change throughout the pregnancy. Normal folks’ bodies make the proper changes automatically. Ours do not. So, even if we are healthy to begin with, we still need more attention than the normal pregnant lady. We are not in danger, typically. Nor is the baby in danger if we are being appropriately monitored, our thyroid levels are normal for pregnancy, AND if the medication we are on is not hurting the baby.

PTU is known to cross the placental barrier, therefore it has the potential to suppress the baby’s thyroid function in utero. So, whether or not it is "safe" for the baby depends upon the dose that is required to keep the mother within the normal zone. To determine this type of thing, you would need to have a heart-to-heart with your doctors (including perhaps, a pediatrician).

Those mothers who had chosen to remove their thyroids (either via RAI or surgery) would be on replacement hormone which does not present a risk to the baby. They still have the issues about monitoring thyroid levels, but the drug is safe, again provided that the mother is being properly monitored for thyroid hormone levels.

Sometimes, but not, I think, always, the babies of Graves moms are born temporarily hyperthyroid. The mother’s antibodies (of all types) are in the babies’ blood at birth, and those antithyroid antibodies can cause the baby’s thyroid to overproduce thyroid hormone. This is temporary because the antibodies are not the baby’s own antibodies. The baby is not producing the antibodies — it has simply inherited them, temporarily. If this does happen, the baby may be given antithyroid medications for a while, until the thyroid function is back in the normal zone.

Any children born to Graves’ parents have a slightly greater risk of developing thyroid disease than the normal population, and perhaps are at greater risk for another autoimmune. It does not mean that any child of yours IS going to develop thyroid disease, but their risk is slightly higher than another person’s. I have simply told my children about this increased risk and advised them to watch for symptoms. Because my mother had Graves, I got diagnosed much quicker than I would have otherwise. It helps.
Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Grave with GO #1075064

Endocrinologists who "specialize" in thyroid disorders are scarce as hen’s teeth, whether you live in a metropolitan area or not. So, I would not worry about the fact that yours sees mostly diabetics. Mine does as well, and she is a terrifically good endo.

Seeing an opthamologist is important when you have the opthamopathy. No endocrinologist treats the eye disease.

When we are hypothyroid, the eye symptoms may become more pronounced. It does not necessarily mean that the eye disease is getting worse. It can simply mean that the eye muscles have become more sluggish (along with the rest of the body), and they work even less well together than they would at normal levels of hormone. I went into my opthamologist in a panic once, many years ago, because the double vision had returned and I thought I was going into a second "hot" phase with the eye disease. He suggested that I have my thyroid levels checked, and he was right: I was a bit hypothyroid. Once the replacement hormone dose was raised, my double vision went away.

Wishing you well,
Bobbi — NGDF Online Facilitator

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