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in reply to: Want to have baby #1062975
The itchiness could be a reaction to the meds. I have had that type of reaction to certain types of meds and it is consistent (in other words, if I happen to be prescribed a similar med later on, the itchiness returns immediately). There could be other reasons for the itchiness, as well. The best thing to do is talk with the doctor.
Remission. Remission is defined as a "temporary" (emphasis on that word) cessation of symptoms. It doesn’t mean "cure." It doesn’t mean the disease has gone away for ever. It does sometimes mean years without the disease returning; but for those of us with Graves a remission is defined as being able to be off the meds for a year or more without the problems returning. That is important for you to keep in mind as you are deciding how to go about treating your Graves. Approximately 20-30% of Graves patients experience a true remission. For those folks who have had one remission, however, the odds of a second remission become significantly less — about 10% was the figure I used to see when reading about this issue. So, what that means is that for every 100 people who get Graves, 20-30 might experience a remission. Of those 20-30 people, 2 or 3 would experience more than one remission.
As for getting pregnant again, once you have regained your health, you would be considered a higher risk pregnancy specifically because thyroid levels normally fluctuate during a pregnancy and ours have to be adjusted "manually," they don’t fluctuate properly without the intervention of meds. Having the proper, normal levels of thyroid hormone in our bodies during pregnancy is important in many ways, so it means we have to have more frequent blood tests than another patient might have. But women DO go on to have safe pregnancies and healthy babies after/while being treated for Graves.
You asked about "being" hypo after RAI. If you were not on any medication after RAI, you might indeed have too low a level of thyroid hormone and "BE" hypothyroid. But replacement hormone is thyroid hormone. It is chemically identical to our own, naturally occurring thyroxin. So, if you are on an adequate dose of replacement hormone, you would not be hypothyroid. You would have normal levels of hormone, in other words, and be "euthroid" like the normal population.
As to which route anyone else would choose — RAI, surgery, staying on the meds — that is truly up to you and your doctors to decide. Some women choose to stay on the meds during a future pregnancy. Some don’t think that is the safest choice for themselves and choose surgery or RAI to remove the thyroid, and then go on replacement hormone. You just need to thoroughly understand the pros and cons — the realistic pros and cons — of the treatment choice, and make up your own mind which one you would feel best about.
in reply to: anyone have Pretibial Myxedema? #1074914Pretibial myxedema only hits a very few people with Graves. My memory — which is not necessarily good — is that only about 1% of us develope it. And Graves itself is not all that common. So having a doctor that says he/she has never seen it is not an indication that there is something wrong with the doctor’s experience.
Mine was treated by a dermatologist. And while PT does not always go away, there are treatments that sometimes work to alleviate it.
Bobbi
in reply to: Concerned about my irritability…. #1063068A couple of things, Christa. You said something about having to be on the meds for six weeks BEFORE they start to work. If that is what you are thinking, it is not quite correct. The meds start working immediately. What doesn’t happen for six weeks to three months is for the TSH to catch up and register how well the dose change is working.
Like Shirley, I am concerned that you haven’t had your meds for a while. That is completely unacceptable. Try to keep in mind when you are talking with someone at your endo’s office, that the person on the phone may not be a doctor, or even a nurse. They are a telephone receptionist usually. And completely unqualified to make medical decisions. Usually, I ask for at least the nurse practitioner. (See, this has even happened to me.) And I challenge that person to tell me that it is OK for me to go without replacement hormone for whatever amount of time it’s going to take to get in to see the doctor. The person who answers the phone, and the nurse practitioner, too, have the doctor’s policy firmly in their mind, and will often try to enforce those policies without thinking of the consequences unless we call them on it. I don’t believe ANY consciencious (sp?) endo would make you go any length of time without an Rx, but a telephone receptionist might. We must push back just a little.
in reply to: Concerned about my irritability…. #1063065Irritability, if caused by our condition, typically occurs when we have too much thyroid hormone. I was lucky enough to have three teenagers when I was diagnosed. Lucky? Some folks wouldn’t agree, no doubt. But at their age, my kids were able to accept that my irritability had nothing to do with them. I know it wasn’t fun for them, but I made sure that they knew I was the problem, not them. I would tell them so, prior to bursting into tears, or yelling about a mess. "I know this isn’t your fault! But I am soooo upset. I just cannot stand this mess!" That sort of thing.
So, even though your kids are younger, you may need to try a similar sort of response to them when you feel yourself getting upset. Pause long enough to put your message into an "I" message: "I am upset," "I am tired and cannot clean up another mess," "I don’t like tripping over toy," etc. This is opposed to a "you" message: "You make me so mad…," "you never pick up your toys," "You are always spilling," etc. You may already do this sort of thing, but if you don’t, and can change your approach, it can be really helpful to help your family feel less verbally battered when your bad mood hits.
You mentioned that your thyroid levels are not always in normal range, so that is something to check. Fluctuating thyroid levels CAN increase irritability. Getting them stablized, always normal, is important. So, if you are not already doing this, make sure that you take your replacement dose first thing in the morning, before you take any other medications, with a glass of water, and wait at least a half hour before you eat anything. You might also have blood work done to check that you are still, indeed, well inside the normal zone for thyroid hormone. Sometimes, other medications can affect the amount of replacement that we need. It isn’t common, especially if we’re able to space the dose of the other medication away from our dose of thyroid hormone, but it does happen, and since you are going off the Zoloft, if it IS affecting your thyroid levels, you might need to be making concurrent adjustments with your thyroid dose.
Not all irritability can be caused by aberrant thyroid levels. Being the stay at home mother of four very small children is a demanding occupation. Staying on top of things takes either monumental organizational skills or amazing flexibility — or both. I only had three children. The third one seemed to add a level of chaos to things I had not anticipated — even though he was not a difficult, or challenging child. It’s just that three little people going in three directions is a lot confusing! Four…..Well, I give you and your babies hugs. I know it’s a lot of work.
in reply to: Concerned about mood #1063073The TSH is a hormone that comes from the pituitary, part of whose job it is to regulate the amount of thyroid hormone in the body. It’s sort of a thermostat control over the production of thyroid hormone. Our doctors tend to use the TSH reading later on, as a guide to how well our meds are doing (or how well we are regulated on replacement hormone). The reason for this is that the TSH test itself can detect smaller amounts of TSH than the actual thyroid hormone tests can detect of thyroid hormone, so it is considered a "finer" measure.
The TSH, though, is also a kind of "running average" of our thyroid hormone levels, which can fluctuate even within the course of a day. So, it can lag somewhat behind when our thyroid hormone levels reach normal. Getting normal TSH levels really only means that you have normal thyroid levels, which is the important thing.
As to why you aren’t feeling your old self? There can be a couple of reasons, but the main one is that just getting TO normal levels is only the first step. Our bodies need time AT normal levels — weeks, if not months of time — in order to heal completely. It may help to think of hurricanes. The wind storm does a lot of damage. Just getting rid of the wind, however, does not leave things immediately normal. There is a period of rebuilding required. Think of hyperthyroidism as a metabolic hurricane wind, in your body. You have gotten the winds under control. Now your body needs to heal.
in reply to: Anxiety, hormones and THAT TIME of the month? #1063087OK, then, you might want to search the archives when this topic came up the first time. It was probably in 1997, or 1998 (but I think most likely 97). There was a patient online with us then who was having a similar problem. What she ended up doing, if I remember correctly, was keeping a log — a symptoms log. She tried to keep it as OBjective as possible, because doctors don’t "do" SUBjective very well. ; ) After a while, she showed the log to her doctor. I do not remember what the outcome was, but I do remember that she was, somehow, helped.
I’ve been at this thyroid stuff a long time, but I am not necessarily fully current with all the research. But one of the things I remember from when the topic was occurring on the board was that there can be fluctuations in the amount of FREE thyroid hormone (Free T4 and Free T3) based on the existance of other proteins in the blood that are capable of binding to the thyroid hormone molecule. Estrogen was one of the potentially binding molecules, if I remember correctly. The Free T3 and Free T4 are the hormone forms (the UNbound forms) that can be used by the cells. If there are fluctuations in the amount of free thyroid hormone available , you might be experiencing periods of time around your menstrual cycle when you are slightly more hyper, or more towards the hyper end of normal, than the rest of the time. If this is indeed happening, your anxiety symptoms could be more pronounced around those times. It’s a theory. And I’m an amateur. But a symptoms log could help to convince your doctor that "something" is going on that could be helped. "Anxiety" is subjective — it cannot be demonstrated easily. But heart rate is objective. Number of bowel movements a day is objective. The presence of tremors is objective. Heat intolerance is perhaps in the middle of things, but worth noting. In other words, look at the spectrum of hyper symptoms.
in reply to: Anxiety, hormones and THAT TIME of the month? #1063085Prednisone can cause us to feel twitchy and jumpy. I’m not sure about the methylprednisolone. You might want to check with the pharmacist about side effect issues. With the monthly ebb and flow of hormones in the menstrual cycle, even normal, non-medicated individuals can experience symptoms of irritability, moodiness, etc., but taking some meds, and also having wonky thyroid levels, can aggravate those symptoms.
If you haven’t had your thyroid levels checked recently, you might want to ask your doctor about that. It sounds from your post like you are being treated for the eye disease. Sometimes that precedes wonky thyroid levels. Sometimes the thyroid never goes out-of-whack, too. But it isn’t a bad idea to check from time to time, because the two issues often go hand in hand.
in reply to: 3 months post op #1063098It’s good to hear from you, Ruby,and to know that you are doing better all the time.
Wishing you a Happy New Year.
in reply to: Susceptible to other things?? #1072073Hi, Tracey Ann:
I think you need to distinguish between "having Graves" and "being hyperthyroid." While we are hyperthyroid, our bodies are weakened by a disease condition. And, yes, you can be more susceptible to any ambient germ, just as if you have another disease, and get sick with colds, etc. But just "having Graves" antibodies does NOT cause us to be more susceptible to available germs in the environment if we are otherwise healthy, and our thyroid levels are at the proper place.
in reply to: Going without meds #1063112I realize that things are hideous for you economically right now. But it is really important that you find a way to receive and take your thyroid replacement. Without it, you are very, very hypothyroid. That can cause the joint aches and pains, and it definitely causes the brain fog. Think of it this way: would you expect your car to run without gas in it? Thyroid hormone is a bit like gas for a car — without it, the body doesn’t run.
Thyroid replacement hormone is — in the scheme of things — cheap. I take the brand name, so I get penalized, financially, for it and it STILL costs less than the co-pay for my insurance. The generic is cheaper still. The problem is that in order to restart it you may need to have a blood test done. (You probably absolutely need to have a blood test done, but you might be able to talk a doctor into starting you up on your previous, regulated dose, and then get the blood test done a few months later.) So, you need to see a doctor. Any GP can prescribe thyroid medication. So, the clinic you spoke of could get you a test, and a prescription. An emergency room could probably do the same. Certain pharmacies are cheaper than others, and you undoubtedly have one of those around you. Sometimes churches can help — do you have a priest, rabbi, minister with whom you could talk? Some of them have a fund to help people in situations like yours. Otherwise, they undoubtedly WILL know the best place to steer you for finding help. My former minister moved to MO a few years ago, and lives in Columbia, and works about 80 miles away in another church. If you are close to that location in the state, I could write him and ask for his suggestions. Send me a private message if you want me to check with him.
Find a way to take your thyroid meds.
in reply to: low tsh levels after total thyroid surgery #1063108TSH stands for Thyroid Stimulating Antibody, and it comes from the pituitary gland. The pituitary acts as a kind of internal "thermostat" for thyroid activity. If it (the pituitary) senses too much thyroid hormone, it LOWERS the amount of TSH that it puts out. If it sense too little thyroid hormone, it raises the amount of TSH it puts out. As I understand things, the only function for TSH is to regulate thyroid activity. When we don’t have a thyroid, our doctors use TSH to monitor the amount of replacement hormone that we take.
If a TSH is lower than it should be (according to ranges of normal set up by labs), it means that you are hyperthyroid — i.e. have too much thyroid hormone. If it is higher than the normal range, you are hyPOthyroid. So the problem arises not from the amount of TSH, but rather from the amount of thyroid hormone.
As to whether or not you are hyperthyroid with your current TSH, you would need to look at your own blood test report. Different labs have different ranges of normal, depending upon how they analyzed the blood (what chemicals they used, etc.) But on the lab report there will be an indication of range of normal, and whether your results fell inside our outside of normal, and if outside, where.
Based on what you told us, it looks like your doctor is trying to fine tune your replacement, not make any major move. (The divided dose, taking a smaller dose on some days than others, is a major indicator. My endo is doing the same with me right now.) So, while your TSH may be on the low side of things, it appears that your doctor thinks it is close to where it should be.
The problem arises when we have symptoms at a dose that our doctors think is appropriate. Your indication of symptoms suggests that even though your TSH might "technically" be close to OK, or even OK based on the lab being used, YOU may not be where you should be. There is a fairly decent range of normal for TSH. On my lab it goes from something like 0.3 (or so) to 4.0 (or thereabouts). That is a LOT of wiggle room. Occasionally my endo gives me a dose that puts me near the hyper end of things (the low end), and I cannot sleep, concentrate, and have hyper symptoms. So, I ask her to lower the dose . My problem with allowing things to remain at the "too low" end for me, is that being hyperthyroid causes us to lose bone, in addition to the simply pesky symptoms of concentration, etc. I don’t want to develop osteoporosis, which is a distinct possibility if I go too long at too high a level of thyroid hormone. I also don’t like the way I feel. But THAT argument usually doesn’t work with a doctor. ; )
I suppose the first thing you need to do is actually look at your blood test results to see what the range of normal is for your lab. Then, if it is indeed showing way low levels, even though normal, of thyroid hormone, ask the doctor to experiment with putting you at a slightly lower level of replacement, to see how that works for you. Some doctors will give a little (like mine) and some won’t. But it cannot hurt to ask. Don’t expect, however, for a dose change to instantly make everything right again. If you have had too much thyroid hormone for too long, it can take a few months for the body to heal enough so that you feel the difference.
in reply to: lugol’s solution #1063129I have no personal experience with Lugol’s solution, so I went onto the search engine and typed "Lugol’s solution side effects." What I came up with suggested that there can be a burning sensation in the mouth, swelling of salivary glands and gums, a metallic aftertaste. If that’s what you are talking about, your experience may be somewhat normal.
If not, or, perhaps even if it is what you are experiencing, you could check back with the nurse in the surgeon’s office that prescribed it.
in reply to: Hi Everyone #1074200Forgetfulness goes away, typically, when we manage to get our thyroid levels under control. That requires taking the meds as prescribed, and going back when needed for blood work to evaluate how things are going. So, managing the forgetfulness is important. I bought one of those daily pill containers, and put all medications I must take in it. That covers a week, and eliminates the problem of "Did I take my dose today?"" There may be other ways for you to arrange things so that you do not forget. Whatever works.
And, using those eye drops is important for protecting the corneas of our eyes. I managed to scratch my cornea once, and it took FOREVER to heal because my eyes are dry. Keeping well lubricated is essential. So, a suggestion: put the drops somewhere where you will SEE THEM, at the intervals you need to take them. Or, set an alarm (on a watch, on a phone?) to remind you to put the drops in. Over time, you will get into the routine, and it won’t be so difficult.
GPs can treat hyperthyroidism. Having an endo is sometimes the best, but having a GP is GOOD. So, another suggestsion: Don’t fret about "the best" when you have "the good" within reach.
Wishing you the best possible holiday season.
in reply to: Hi Everyone #1074198Hi, Dolphin:
Since you are feeling extra dry in your eyes, you probably should be using drops, regularly. People with thyroid disease of any type often experience dry eyes. The consistency of our tears actually changes. They become more watery: regular tears in normal people tend to have an oilier consistency, and the tears actually sit on the eye, lubricating it, without running out. So, there are daytime and nighttime forms of the artificial tears. The night form is a bit like petroleum jelly in consistency. These are not the "get the red out" types of eye drops, but a kind called "artificial tears." They can really help to alleviate the discomfort we often feel as a result of the dry eyes.
in reply to: I Choose RAI I-131 #1063430Hey, Jules, I am so pleased to hear that you are feeling so much better. That is so great!
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