[Bobbi]

in reply to: Hi everyone, we are back! #1065223

Catsmum: I recently had an issue with hyperthyroid symptoms. My dose of replacement hormone had been raised two months earlier, and I had mildly hyper symptoms the whole time I was on it. The most annoying aspect of it was that I could not sleep at night. When my blood work came back as "normal" — at the lower end of normal. I told my endocrinologist that I wanted a lower dose of replacement, and she was willing to try it. Two months later, feeling terrific, I had to have another blood test (just to check) and while the work was still in the normal range, it was even more towards the hyper end of things than the previous test had been! So my dose was lowered again. Apparently my first blood test was done too soon to actually "register" how hyper the dose was making me.

I relate that episode to you, Catsmum, because I think your daughter knows hyper symptoms, and she should be diligent about talking with her doctor about them. "Normal" is a RANGE, not a specific point on a chart. Some of us experience hyper symptoms — verifiably hyper symptoms– while still in that normal range, albeit at the near end of things. You might have your daughter start keeping a log of things like resting pulse rate, number of bowel movements a day, any annoying tremors in her hands, sleep patterns, etc. Doctors unfortunately need specific "data" rather than subjective commentary. But if your daughter can document symptoms, the doctor needs to listen. Even subclinical hyperthyroidism has been shown to cause bone loss and muscle wasting. Sometimes we are wrong, and the problem is something different with similar symptoms. But we DO know what hyper feels like, and our information needs to be given credible consideration.

[Bobbi]

in reply to: EYES WATERING, TEARING ALL THE TIME! #1065029

Responding to several posts:

Soft tissue swelling can be one of the signs of TED; it can also be caused by allergies, or other issues.

Photophobic reactions have something to do with thyroid disease. I don’t remember the details from long ago, but when I was first diagnosed with Graves, my endo asked me about sensitivity to light. I was significantly sensitive to light. I don’t think it has ever completely gone away. She indicated it was part of the Graves problem.

Excessive tearing accompanies dry eye conditions. My opthamologist’s office has a television in the waiting room which features loops on eye disease issues. One day while I was waiting there, the discussion on the TV was about thyroid related dry eye conditions. How fortuitous! Anyway, according to that program, the quality of our tears change when we have thyroid disease. Normal tears contain a fatty substance, that makes the tears somewhat viscous/thick. When we have thyroid disease, or perhaps it’s when we have TED, I’m not sure, the tears become more watery. Normal tears stay on the eyeball for longer periods of time than our watery tears do. And, as a result, our eyes dry out. If the eye doesn’t close completely when we sleep this problem will be even more pronounced. We appear to have more tears more frequently than normal when we have dry eyes, but these tears are not lubricating the eye with the same efficiency as our former, normal tears did. If the problem is serious for you, it is often possible to have plugs put in that will keep the tears on the eye for longer periods of time.

[Bobbi]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064869

I do understand, kristenb, about not wanting that much weight loss. By the time I figured out that I really wasn’t going to gain uncontrollable weight after RAI, and had lost all that weight, my docs AND my husband were telling me I was too thin. I was not "dieting" in the sense that I was doing anything radical. I just eliminated sweets and other things which have lots of calories but few nutritional plusses. As I said, I ate three meals a day, with a healthy snack in between meals. Also, understand that when we do RAI we do not instantly have normal levels of thyroid hormone. It can take, and usually does take, WEEKS for the body to go back to normal levels of hormone before going hypothyroid. So, I started watching what I was eating during weeks when I was still hyper. It is one of the aspects of the disease, and its treatment that makes weight issues more complicated.

The issue with weight gain is also complicated by the (typical) loss of muscle, including major muscles while we are hyperthyroid. Two facts to keep in mind. Muscle weighs more than other tissues in the body. And, second, muscle burns more calories, even at rest, than other tissues. Losing muscle appears as weight loss, but when we lose muscle our metabolism is lowered. We are not burning as many calories, so we cannot eat as much without gaining weight. When we regain normal, controlled levels of thyroid hormone the muscle starts to come back. This appears as weight gain, but when it returns our metabolism is going back towards its normal point. The returning muscle isn’t strong, necessarily, and needs to be conditioned (by exercising wisely) back into strong muscle. We typically do not "feel" like exercising, or, conversely, we try to do too much, too soon, and hurt ourselves. It is necessary to exercise the returning muscle, but only in baby steps at first.

[Bobbi]

in reply to: HELP!! I feel like I’m losing my mind!! #1064840

Hi, juneknoel, and welcome to the Board. There was a double post of this message, so the extra one has been removed.

It does not sound to me like the communication between you and your endo’s office has been completely successful. I realize that endos are busy and rely on their nursing staff or their PAs to field questions in between visits, but when you are getting started with treatment, I think it is important to talk to the doctor when issues arise. The symptoms that you are describing do indeed relate to thyroid hormone levels, and it is possible the nurse is dead wrong to tell you that they are not. The only way to check is via blood work. If your level of medication was not changed in June when you saw the endo, it might be a good idea to call and ask for another blood test. My endo’s office will allow patients to do that, but some endos do not. But it is worth a try. The thing is, if your levels were "better" but not "normal" then, it is possible that they are still NOT normal, and if they are not, then the symptoms could very well be thyroid-related.

(If, however, your level of medication was changed slightly when you saw the doctor, you might have to wait another couple of weeks in order for the blood test results to be more accurate. It takes time after dose changes for our blood test results to "catch up" with our actual thyroid levels.)

A really important point for you, though, is that you MUST get rid of hyper levels of thyroid hormone. Allowing yourself to remain even a little hyperthyroid will not allow your body to heal. You need it healed so that you can go back to your normal life and doing the things you love. If you cannot take sufficient methimazole to get you back to normal (because of the itching) there are other options, typically. And don’t try tinkering with the medication dose by yourself. You and the doctor cannot tell how much works if you are not taking the prescribed dose as directed. Tinkering will only delay you getting healthy again.

Good luck.

[Bobbi]

in reply to: Meds/Remission #1065055

I am sorry to hear that you are feeling those awful hyper symptoms again. My advice, for what it is worth: Listen to your body. You are undoubtedly more intimately acquainted with what hyperthyroid feels like than your doctor. If you think you are hyper, you need to relay that information forcefully to your doctor and seek relief.

[Bobbi]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064866

I have to chime in here. I was absolutely convinced by the awful postings on the web about weight gain after RAI that I was going to have a huge weight gain, that I came up with a plan to convince my endo that RAI was the evil culprit. Everyone said that their docs didn’t listen. So, when I had RAI I started keeping a log of every bite that went into my mouth. I gave up "empty" calories for the most part, but made sure I ate regularly, including snacks (but healthy ones like fruit or cheese, nuts, etc.) and watched portions. And, as I said, I wrote everything down. I did that to prove to my endo that I wasn’t overeating. I lost roughly 22-25 pounds after RAI. I cannot remember precisely, because it was quite a while ago, but I do remember my lowest weight. I eventually gained 15 of those pounds back, when muscle returned. I know that it was muscle, because my smaller clothes continued to fit even with the weight gain.

Weight issues are complicated, true. You WILL regain any weight that you lost due to lost muscle. But that is good. Having muscle makes you strong, and it raises your metabolism. But uncontrollable weight gain after RAI is not a given.

I recently read an article in a magazine that cited a study that had been published in one of the medical journals. They found that people on a diet who kept a log of food eaten, like I did after RAI, lost twice as much weight as people who did not. It keeps you honest. I almost never remember the doughnut in the a.m. when I am looking at a lovely piece of berry pie in the evening. But if I’ve written it down, I cannot forget, even if the log isn’t with me while I’m looking at the berry pie. Something about the act of writing things down helps to keep them in memory, perhaps.

So do not be put off by the postings out here on the web. Eat wisely. Watch that you are getting good, nutritious food. Cut out the empty calories. And eventually, your weight issues will normalize again.

[Bobbi]

in reply to: Overwhelmed #1064920

To answer a couple of your questions that I think got missed:

Endos do not treat TED — opthamologists do. Endos do look at the ability of your eye muscles to work together, and can detect some of the issues that develop with TED. Typically, however, there is no treatment offered unless the eye disease gets to a point where it is threatening the optic nerve. The disease does advance and recede without any treatment whatsoever. But for your own peace of mind, having a qualified eye doctor watching things might make you feel better.

The grittiness we feel is due to the fact that thyroid disease causes the quality of our tears to change, and they become less capable of keeping the eyeball lubricated. Normal tears are thicker, and stay on the eye without running out (unless we are crying). Thyroid disease causes the tears to lose whatever it is that thickens it; the tears become runny. So, we seem to have tears forming all the time, but our eyes are dry and gritty. The best thing you can do is use eye drops that are available in grocery stores and pharmacies, over the counter. These drops are called "artificial tears." They are not the get the red out type of drop, nor are they the type of drop used for allergies. They are just supposed to simulate normal tears. The best type to get come in a single use dispenser, without preservatives. But these are more expensive than the type that come in a multi-use bottle. Anyway, we should use the drops frequently enough to avoid that gritty feeling. The drops will not only improve those symptoms but they will help protect your cornea from scratches. Dry eyes do not heal well from a scratch (speaks the voice of experience).

Living with GD. Our treatments work to make us healthy again. That is what you can expect. Yes, we have to take some type of medication on a daily basis. A small percentage of people do go into remissions and can live without medication for a while, but the majority of us take some medication daily to keep our thyroid levels within the normal zone. But there are treatments available to us that keep our hormone levels within normal parameters, and once our bodies heal from being hyperthyroid, we get well again.

[Bobbi]

in reply to: I’m pregnant! #1064914

Hi, Ely: Great news! Congradulations.

As to your question about the chance of your baby having thyroid problems at some point: From what I have been told, any of your children are at a "slightly" greater risk for thyroid disease than a child who does not have the same type of family history. The odds are that they will not fall ill. But, what I did was tell my kids that there’s a familial genetic tendency, and they should pay attention to certain symptoms if they occur.

I wish you and your baby good health.

[Bobbi]

in reply to: New to this Site-Have Graves TED #1064959

Hi, John:

The problem is that the doctors know the general progression of the disease, but not necessarily how badly it will affect each patient. Getting "some" symptoms doesn’t mean you will end up with horrid problems. Nor is there any true indication of how long things will last. I did a whole lot of fretting while I was enduring the eye disease.

If you are experiencing difficulties, there is a decent eye institute in Miami — Bascom Palmer. The doctors there specialize in the more extreme diseases of the eyes. One of the people who started this board, Jake, used to drive hours to get to Bascom Palmer for his surgeries and checkups.

[Bobbi]

in reply to: TED & Pain in head #1064950

I don’t know what it might be if the pain is coming from the TED. Shirley, or someone else here who has had a worse time with that disease than I had might be able to enlighten you. My comment is that not every health issue that we experience has to do with the Graves/TED. The only way to truly know what is going on is to go to your doctor, and ask. I developed blinding (transient) pain in my temple area a few years ago, and it turned out that I clench my teeth while sleeping. I was fitted out with a bite guard, and it alleviated the problem. So if it continues at all, see your doctor to find out what IS going on.

[Bobbi]

in reply to: a little confused #1064955

Having ANY type of surgery while hyperthyroid is discouraged. There are times, I suppose, when it might be done because a situation is just too dire to wait, but the risk of the thyroid going berzerk during surgery (when it is out of control and hyperthyroid) is significant from what I understand.

So, yes, your doctors might want to put you on methimazole temporarily, to bring down the levels of hormone in your body before the surgery. The thyroid not only makes thyroid hormone, it also STORES it for future use. With the aid of the drugs like methimazole, new thyroid hormone production is blocked, so the body uses up the stored supplies for a while, reducing the risks involved with surgery.

As others have told you, there are lab tests which can monitor your liver function while you are on the drug. As I understand things, liver problems can occur if the patient’s liver cannot process out the toxic by-products of drug metabolization quickly enough. When we take drugs, the liver converts them into some usable (for the body) form. This is a chemical reaction. And often, with a chemical reaction, there are left-over by-products. ( They’re like the onion skins, or carrot tops left over from food preparation. ) And some of these by-products can be toxic in large enough quantities. As we age, our livers become slower and less efficient at moving these by-products of drug metabolism out of the body. And if they stay in the liver too long, they can cause liver damage. It is very common for elderly people to suffer more side effects from drugs than young people due to the lower functioning of the liver, and the fact that drugs stay in the liver far longer than they do in the young.

Anyway, there are some things you could do for yourself while you must take methimazole that could ease your mind. I was much older than you when I was put on PTU (the other antithyroid drug), and I was concerned about liver issues, too. But I tried to eliminate, as much as possible, any other drug metabolized in the liver, and known to have an adverse impact on it (like acetaminophin– which is over-the-counter pain reliever) and alcoholic beverages. My logic was that by eliminating other, less necessary, sources of potential liver damage (however slight), I was maximizing my odds for the ATD not doing additional damage. The ATD was necessary at that time. The other chemicals I didn’t need. I pass the thought on for you to consider.

[Bobbi]

in reply to: methizamole? #1064971

Your best bet is to get another doctor, and at least get a second opinion. While your doctor is correct that the incidence of liver damage with methimazole is relatively rare, his reason for ignoring your concerns does not sound medically rivetting. It is indeed your body, and whatever treatment you choose is one that you must be able to live with for the rest of your life.

The thing is, that since the occurrence of liver damage with the med is slight, you should consider taking it WHILE you get that second opinion. Being hyperthyroid is a real and present danger to you. Every day you spend hyperthyroid is horrid for your body, and for your long-term health. If you can bring yourself to take the meds while waiting for another doctor, you will be helping your body by starting to control your thyroid hormone levels back towards normal.

I wish you well,

[Bobbi]

in reply to: TWO HOUSEKEEPING BOARD INDEX QUESTIONS #1064994

Hi, Shirley:

I cannot get it to log me in automatically, either. I accept cookies. And I use different computers. I just gave up on trying that automatic login.

[Bobbi]

in reply to: Lost…. #1064981

I can try to answer some of your questions. First off, the eye disease runs a separate course from the Graves. One small study, almost twenty years ago, seemed to demonstrate that RAI could cause a "temporary" worsening of the eye disease symptoms in about 16% of the patients studied. That study has not been duplicated by other researchers, so its validity is in question these days. That same study, however, showed that a concurrent course of steroids with RAI eliminated the temporary worsening of eye symptoms, so if there is significant eye disease our doctors may still prescribe steroids if the patient is to do RAI.

There are several sets of muscles which must work together in our eyes to move the eyeballs in synch with one another. When we get TED, some muscles are affected more than others. And it varies from one person to the next, as to what type of visual oddities will occur. Typically there is a hot phase during which we see symptoms develop and worsen. Getting "some" symptoms does NOT mean, however, that you will get horrid eye disease. Some people get minor symptoms which go away over time. Whether or not things return to normal depends upon how bad the disease becomes. I was told at one point in my hot phase that the likelihood of complete remission (i.e. going completely back to normal) was not likely because the eye muscles had been too badly affected. That said, when the hot phase ended, and the symptoms started to remit, I did get a huge reduction in problematic symptoms. My double vision went away except for times when I am very tired, or sick, or temporarily hypothyroid. So, the key is to be aware of issues, but not to panic.

The thing I noticed though, as you were describing some of your problems is that you are at the age where many people develop a need for glasses and/or bifocals. Somewhere around the age of 40 the lens of our eyes becomes less flexible. We become more far-sighted. It is normal, and it happens to just about everyone. So, some of the symptoms that are plaguing you may not be TED related.

Similarly, bad night vision can be caused by cattaracts (sp?). Many of us develop them, or start to see them develop at about this stage of life, too. They may not be bad enough to warrant the surgery, but they might be present, and causing vision problems particularly at night.

Anyway, the main thing is to find a good ophthamologist and work with him/her. I do hope you find answers to your issues soon.

[Bobbi]

in reply to: Dx with graves disease #1065017

I’m not sure if I understood what you were trying to ask. But if your thyroid was underactive (hypothyroid) and you were put on thyroxin, your levels of thyroid hormone became more normal due to the thyroxin. Thyroxin IS thyroid hormone. It is chemically identical to the body’s own T4. While you are taking it, if you are taking the correct amount, you should not be hypothyroid any longer. Weight issues become normal.

[Author]

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