[Bobbi]

in reply to: Fluctuating TSH- what can I do??? #1067022

Of course it moves. Did someone tell you that it was supposed to be exactly the same, day in and day out? I honestly have never been told that. Our bodies use thyroid hormone to run the cells in the body. I cannot imagine any situation in which, week in, week out, my thyroid numbers would be exactly the same because some days are more hectic than others; some days are more stressful than others; some days involve lots of exercise, while others do not. There are constant variations from one day to the next, one week to the next. Keeping thyroid levels within the normal range is what is important.

The TSH is a "running average" of your actual thyroid levels. So, if your actual thyroid levels vary slightly from day to day, your TSH will fluctuate a bit, to show that. But when you get a blood test, you are looking at a single moment in time with your actual thyroid levels. Imagine that you were trying to describe your life using photography. The blood test is a snap shot. A single moment in your life. The TSH, being a running average of thyroid levels, is more like a "movie." It shows what has happened over time.

As to why you are not feeling as well as you would like: It takes months at normal hormone levels for our bodies to heal. The longer we were hyperthyroid, the longer it can take to heal. My former GP told me that in her experience the average healing time was nine months at normal hormone levels. Average. Being hypothyroid is also an aberrant hormone condition, and it, too, takes its toll on the body. So since you were hypo for some months, those were not "healing" months.

I hope this information helps.

[Bobbi]

in reply to: Graves Disease and my future #1067105

(For those who are not familiar with the terminology, block and replace therapy involves taking a very large dose of ATD — to block the thyroid from producing much, if any, hormone — and then taking replacement hormone to bring the patient back to normal levels of hormone.)

Hi, Steph:

I doubt I can be of much help here. The only person who can tell you what to expect after six months is going to be the doctor who used the phrase. Does it mean that you can continue on it beyond six months if it works to control your hormone levels well? Does it mean you can travel? I have no idea, unfortunately. You might try keeping pen and tablet handy, and writing down questions as you think of them, and ask your doctor the next time you see her.

I’m sorry to hear you may have to put off your planned trips. That has to be a huge disappointment.
Best wishes,

[Bobbi]

in reply to: GETTING RAI ON DEC 16….I’M SCARED #1067117

I’m going to be out-of-town on the 16th, PAT1953, so I will wish you good luck this morning. I don’t know if I mentioned it directly to you, but my mother had Graves, and had RAI in the 1970’s. She lived another 30 years without thyroid disease issues (other than taking one replacement hormone a day). I had my RAI in 1996, and it helped to make me well again, too. I do wish you the same good luck,

[Bobbi]

in reply to: My choice of treatment and a question about it #1068069

It sounds like your doctor is a military doctor — and perhaps the same rules do not apply regarding sharing test results with patients. Civilian doctors have no problem with it.

Wishing you good luck,

[Bobbi]

in reply to: My choice of treatment and a question about it #1068067

Hi, hansontrish, and welcome to our Board.

First of all, there is no one-size-fits-all "right way" to treat hyperthyroidism. Patients present different, and highly individualized issues, and what may be the best way to treat one patient is not necessarily the best way to treat another.

What a doctor decides might be the best way to treat a patient, depends a lot on the doctor’s experience with adverse side effects, opinion about the safety of certain drugs in women of child-bearing age, the age of the person, the person’s heart condition, etc. etc. etc. etc. ……. A lot of times, our doctors will present us with options, telling us the pros and cons of each, and let us choose. Other doctors are more dogmatic in their approach. It sounds like your doc falls on the dogmatic end of the scale.

You may have options. Is it possible to get a second opinion from another doctor? If you are on the antithyroid drug (methimazole — we call them ATDs here) and it is functioning to keep your thyroid levels in the normal zone, then you probably have time to seek out another doctor to discuss the issues. On the other hand, if the drug is NOT functioning well to keep your thyroid levels in the normal zone, that is a whole other thing. Waiting for another endo appointment might not be wise. A way for you to tell: get that lab report. It is yours. It doesn’t belong to the doctor, or the doctor’s office. I always ask for a copy of my lab work. And my doctors give it to me, without quibbling. We cannot — as patients — intrepret a lot of the results from lab reports. But one piece of information that is loud and clear on those reports is whether or not our thyroid levels are in the normal range. The reports tell us the range of "normal" for every test taken, and where our results lie (either "high" or "low" out of range).

How long do we have to remain away from other people after RAI? There is –again — no definitive guidelines. One person will say "a weekend" while another will recommend a week. Some of the variations are due to the caution of the recommender; other variations may be due to the dose of RAI. The recommendations are given to prevent the people around us from getting unnecessary exposure to radiation. It is very much like making dental technicians leave the room when they turn on your xray machine: the amount of radiation is not harmful all by itself: we get the lion’s share of the radiation, and RAI has been proven safe for us, so the exposure other folks get from us is not likely to be harmful all by itself. But radiation exposures are cumulative over a life time, so preventing unnecessary exposure is important. The smaller the person (or pet) the more likely you are to hold that person, or pet, near your neck and that would lead to radiation exposure. And radiation exposures in small people and pets, particularly, can have a greater effect. So, we are always told to take a few days away from babies, because we cannot tend them without holding them. Older children, spouses, that we can keep a distance from (speaking of feet, rather than miles) are typically excluded from such a ban. My own instinct was to follow the advice of the radiation doctor/tech — i.e. the individual responsible for administering the treatment, and the person most trained in handling those materials. If you go ahead with the RAI, make sure that that person knows your home situation, the age of your child, etc.

The science facts may help you to determine what you think is wise. I131 (the RAI treatment) has a half-life of 8.1 days. This means that after 8.1 days, half of it is still emitting radiation in your thyroid. It is also, highly soluble in water. The effect of this aspect of it means that any I131 that did not get trapped in your thyroid within the first 24 hours is rapidly eliminated from you body via fluid: urine, sweat, saliva. Many times we are told to sleep on separate sheets, flush the toilets twice for a few days, use plastic disposable eating utensils, for this reason. Scientists believe that a radioactive material is essentially "gone" once five half-lives have past. So, the RAI is considered completely gone from the body after about 40.5 days. But, each week the existing amount has diminished by half, and after 10 days (just under your doctor’s estimate) we are, normally able to go about our everyday business without taking any extra precautions for other people. His use of the word "isolate" however is excessive. We do not have to live, by ourselves in a locked room for 10 days.

We have a list of recommended books on the subject, somewhere on the main Home Page (I think). I have forgotten how I navigated to that list, unfortunately. I have read most, if not all of those books, and I think they helped me to understand things fairly well when I was trying to figure out what treatment to do. At least some of them are available in libraries and bookstores, or from online sources. The organization tries to list books that have factual, well-founded information (as opposed to untried speculative suggestions), so I recommend that you try to get one of them.

I hope this info helps. If you have more questions, feel free to ask them.

[Bobbi]

in reply to: RAI update #1067190

TSH stands for Thyroid Stimulating Hormone. It comes from the pituitary, which acts as a type of "thermostat" for the production of thyroid hormone. If the pituitary senses too much thyroid hormone it lowers its production of TSH. If it senses to little thyroid hormone, it raises its production of TSH. The ability of labs to test for very teeny quantities of TSH is one of the reasons our doctors rely on it as a way. So TSH is not an antibody.

I’m not sure what tests your doctor may have run to look at the antibodies — the lab report might have indicated "antimicrosomal" tests, or "antithyroglobulin" tests. There may also be some other, shorthand language involved. (Which isn’t helpful, I know.)

To address another issue you raised, RAI does not "cause" the eye disease (and, conversely, PTU does not keep it from happening). In some patients who have undergone RAI, there is a temporary worsening of their eye symptoms, which is thought to occur because RAI may stimulate the immune system. Anything that stimulates the immune system is going to increase the symptoms of any pre-existing autoimmune disease.

And, yes, if you do go in for RAI, they will take you off the PTU for a week or so prior to the RAI. They may put you back on PTU after the RAI has had a chance to get into your thyroid, but at least prior to the test, they want the thyroid cells to be "available" to the radioactive iodine. So, you WILL become more hyper for a week or so. It isn’t pleasant, but I thought it was a fair trade off. I got a treatment that eliminated my excessive levels of thyroid hormone, and allowed me to begin healing. Also, my doctor gave me a beta blocker to take during this time, which helped — a lot — with the hyper symptoms.

Wishing you well,

[Bobbi]

in reply to: Surgery 12/30 #1067137

Hi, Ashley:

I’m not sure there are too many folks posting here these days who opted for surgery — I’ve been watching to see if anyone would answer your question, but …..

You might want to go into the archived posts, and type in surgery, and see if you can find the many posts there where people talked about their surgery experiences. I have seen posts over the years that address your question.

I did not have my thyroid removed surgically, so I cannot give you specifics, like you want. But I do wish you good luck,

[Bobbi]

in reply to: RAI update #1067188

You have really had a rough time of this disease, kismetyeah. My heart goes out to you.

I do hope this new dose of replacement hormone puts you in the right spot. I know it’s tough, but you need to accept the fact that until you get your body at controlled, normal levels of thyroid hormone for a few months, you probably are not going to feel completely well. Our bodies need time AT normal levels to heal. And the longer our bodies were battered by too much thyroid hormone, the more true that is. It helped me a lot during that time, to look for wee bits of improvement. It was so easy to be impatient, because I’d felt so rotten for so long. But by looking for improvement, rather than "Well" or "Normal" I was able to focus on how things were improving, and it gave me hope, and perhaps a bit more courage.

Well, anyway, fingers crossed that you start feeling a little better, day by day from now on.

[Bobbi]

in reply to: EYE QUESTION #1067143

Hi, Susan:

I will tell you my experience as a result of RAI. I was so absolutely sure that I was going 1) to gain weight and 2) that my doctor wouldn’t believe it was anything but overeating that I kept a food log. Every bite that went into my mouth was recorded, so that I could prove that I wasn’t over -eating, and was still gaining weight. I also made good and sure that the only calories that went into my body were nutritious ones. I was on a "good" diet. I made sure that I ate at reasonable intervals (including planned snacks — an apple, some cheese, nuts, etc.) I didn’t let anything sweet cross my lips. I had RAI the week before Thanksgiving one year, and went hypo five weeks later. By that point, I had lost about ten pounds. In total, after RAI, I lost 18 pounds before gradually starting to put it back on. (I never did have to show my log to my doctor!) When the pounds started coming back on, I was exercising regularly, and I put on 15 pounds before having to go up a dress size. That pointed out to me that the returning weight was more muscle weight than flab weight.

You may gain some weight after RAI, if that is what you choose as your treatment option. We lose muscle while we are hyperthyroid, and it does tend to come back (as weak muscle) once we are at normal levels of hormone. Muscle weighs more than other body tissues, but it also burns more calories than other tissues, even at rest. So muscle weight is GOOD weight. I have a friend who runs marathons. even though she’s close to 70 years old. She eats like ten horses. She is a size one. Yes, she’s getting lots of exercise, but she also is pretty solid muscle.

I do understand your worries about gaining weight. But the long-term effects for you of excess levels of thyroid hormone are HORRIBLE. Every minute you are hyperthyroid, you lose valuable bone. Every minute you are hyperthyroid, you lose muscle. It is, unfortunately, the "evil you know," and you may be more comfortable with it than the unknown. But you need to do whatever treatment WORKS for you. If the meds are not working — i.e. if they are not controlling your levels of thyroid hormone in the normal zone — you really do need to think long and hard about your doctor’s advice.

[Bobbi]

in reply to: EYE QUESTION #1067141

There are some eye appearance changes that can be due to elevated levels of thyroid hormone. Actually, the main one that I can think of is upper lid retraction. The muscles of the upper eye lid tighten in response to high thyroid levels. This opens the eye wider, and gives the appearance of bulging. (It is not true bulging or protrusion, it just appears that way.) So, if your thyroid levels turn out to be on the high side again, that might be what is going on.

The fact that it is only happening to one eye, however, may be an indication that the eye muscles themselves are changing in shape. In other words, it could be a sign of TED, which is not associated with elevated levels of hormone. For whatever reason, TED changes often affect one eye more than the other. Since doctors can look at the eye muscles rather easily these days, through the soft imaging techniques of ultrasound, MRIs, CATscans, etc., it is now a theory that most, if not all of Graves patients have some degree of TED, so it is not cause for you to panic if that is what your doctor indicates. But it might be a good reason to begin an association with an opthamologist.

[Bobbi]

in reply to: Heat intolerance while sleeping #1067148

Hi, Jaime:

Synthroid is thyroid hormone. I know that sounds like a dumb statement, but what I mean by it is that the Synthroid acts exactly like thyroid hormone, and if you get too much of it, you can be hyperthyroid (which may have happened when you were dropped from 150mg to 112mg). Also, if you take too little of it, you could be hypothyroid. You should not expect to actually be hypothyroid if you are on the correct dose.

Night sweats may have any number of causes besides excess levels of thyroid hormone. I don’t know. If it were me, I would make an appointment with my doctor to get my TSH levels checked again, and if all was still well in that area of things, I would ask the doctor what else might be going on.

Wishing you well.

[Bobbi]

in reply to: eye muscle surgery #1067222

Hi, Lakeview:

I don’t think Jake meant to imply that the surgeries took place during the hot phase. They might have, I suppose, but strabismus surgery usually does not take place in a hot phase. Decompression might be done during a hot phase if the optic nerve is threatened, but strabismus surgery is usually held off until later. Notice Jake said he had multiple hot phases — and isn’t that just the pits!

[Bobbi]

in reply to: RAI update #1067184

Most of us, at one time or another, have asked this same question, hockey. But, no, it is typical for our doctors to request less in the way of thyroid numbers, over time. Eventually, you can expect your doctor to request only the TSH number and none of the the actual thyroid numbers. There’s one exception, typically: if you encounter a problem, there might be one or two blood tests requested that include a more complete look at the thyroid numbers. But the tendency is to go to fewer tests over time. There may be diagnostic reasons for it — it may help, initially, give the doctor a broader view of what is happening, to know the T3 situation. An especially high T3 at time of diagnosis can help to guide the choice of antithyroid drug, whether or not to prescribe a beta blocker, etc.

[Bobbi]

in reply to: 10 days on Methimazole and Feeling Worse? #1067154

Unfortunately, it takes time for most of the treatment options to work to make us feel well again. ATDs, like methimazole, start immediately to interfere with the production of new thyroid hormone, but the thyroid has stored supplies of hormone that are unaffected. Until those stored supplies are used up, the antibody-fed demand will cause thyroid cells to continue to release as much thyroid as possible and you won’t feel much difference.

In addition, there’s no pill that brings back "normal" quickly. Even after we get to reasonably stable levels of thyroid hormone, we don’t feel "normal" until the body has had a chance to heal. And, yes, that takes time. My GP at the time told me that in her experience, I should expect it to take nine months AT normal levels of thyroid hormone, before I truly felt normal again. It didn’t take that long for me to feel much, much better, but it did take quite a while for me to feel completely well again.

I do know how hard it is for you right now. And I hope you are able to start seeing improvement very soon.

[Bobbi]

in reply to: teenagers with graves ? #1067201

Hi, Ashley:

You really have been having a hard time with this disease! Please know that once the doctors have gotten control over your thyroid (however they accomplish it) you will begin to regain your health. We do get well again once we can get our thyroid levels under control.

Keeping you in my thoughts,

[Author]

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