[Bobbi]

in reply to: TSH not Increasing #1171680

TSH is sort of a “running average.” So it lags behind the actual thyroid hormone levels. But if Free T3 is high, that would help to explain the lack of movement in the TSH.

Hope you are feeling better soon.

[Bobbi]

in reply to: Woke Up With Red Eyes.. #1171688

Having bloodshot eyes is not something I experienced with TED. You could try alleviating the problem — until you can get into the opthamologist — by using an artificial tears night time formula. It’s goop, basically the consistancy of petroleum jelly. But sometimes our eyes do not close properly when we have TED, and at night they can become very very dry. The goop helps. Some of us have to tape the eyes shut as well, but starting off with the goop can be helpful.

Floaters are something that lots of people get, apparently. My opthamologist explained that they are caused by one of the inner parts of the eye breaking down. I vaguely remember it being a product of aging? But I might not remember correctly. They will, eventually, float to the bottom of your eye, and out of your field of vision. But they can be really annoying, especially at first before you have seen enough of them to ignore them.

[Bobbi]

in reply to: Future weight gain? #1171602

Well, the muscle didn’t get weak overnight (although some times it feels that way) and it won’t come back and get strong again quickly either. Also, according to one of the endos that spoke at a Graves conference long ago, the muscle that comes back is “mushy” muscle at first, not strong muscle. So, we have to exercise to strengthen it. We also don’t know if all the muscle loss is returned. I felt that I had to wrap myself up in patience during the recovery period. Nothing happens as quickly as we would like.

[Bobbi]

in reply to: Worried & Upset About Liver Test Results #1171656

I took propanolol. It protects the heart somewhat from arrythmias that can result from being hyper. (Too much thyroid hormone can mess up the heart’s pattern of beats — and this can be very dangerous.) It also masks some of the symptoms of hyper — it calms the tremors and it helps a bit with sleeping. Don’t be fooled, though. If it makes you feel better (and it probably will), it is not controlling the thyroid levels at all. And it is those levels that are the danger.

[Bobbi]

in reply to: What now? #1171665

Hi, Alexis. I am so sorry to hear that the ATDs (your preference) are making you sicker.

Apparently, surgeries — ANY type of surgery — while hyperthyroid is significantly more dangerous to the patient than it would be otherwise. Surgeries on the thyroid while hyperthyroid, are even more dangerous. So, if your doctors tell you that surgery is not an option, I think you need to listen.

As for RAI. Well, you would not be able to continue breast feeding your baby. I don’t know for how long. You would need to consult the doctors. It is my understanding though that any RAI that does not get taken into the thyroid is eliminated from the body within a few days. Whether or not that includes breast milk, I don’t know for sure. I mean I KNOW that you would have to stop for a period of time. How long is the unknown. It might be a short period, though, (weeks) with you being able to use a pump to keep your milk flowing. The issue hasn’t come up here on the board. I will say though that babies do thrive on bottled formula, if that is what the outcome had to be. It isn’t what you want, but we cannot always get what we want. Sometimes, we have to bend a bit.

As to how long you might have to be remote from you children: it depends upon the dose of RAI needed to get you well again. Some folks online seem to combine the recommendations for thyroid cancer patients and Graves patients. But thyroid cancer patients get tremendously bigger doses of RAI than we do. Many, many times bigger doses. So, their restrictions are not typically our restrictions. We are typically told to keep a space between us and small animals and children. You would not be able to hold your baby for, perhaps, a week. The doctors involved will tell you how long. My recommendation is that you think of it as a “vacation.” Or even plan a few days at the beach to make it a vacation. People DO leave their babies for a few day to take a trip, and the babies survive.

I tend to do better with facts than with anecdotal (people’s stories) evidence, so I will share what I learned about RAI with you, in case it will help. RAI is very soluble in water. And the ONLY place in the body that utilizes iodine is the thyroid. So the RAI dose we take either gets planted in the thyroid, or it is excreted from the body (urine, saliva, sweat) within two or three DAYS. While we are eliminating any excess RAI, we are given special “handling” instructions: double flushing, using throw-away eating utensils, etc. This is to prevent other people from being exposed to unnecessary radiation of any type. Radiation exposures are cumulative in a lifetime. Today’s sunburn gets added to last year’s chest xray, gets added to your time on the airplane and so forth…..

RAI has a half life of 8.1 days. What that means is that after 8.1 days half of the dose that made its way into your thyroid is gone. After two weeks, three quarters of it is gone. After three weeks, seven-eighths of it is gone. And so on. Scientists sometimes create an arbitrary ending of a radioactive substances “life” as five half lives. So after 40.5 days (just a bit over a month, or five weeks) the RAI is, to all intents and purposes gone.

So, the recommendations that your doctors give you will be based on this knowledge.

Right now Alexis, you are really sick. And if the meds don’t work, your life is threatened. Your children need a mom. And not just any mom. You. So don’t plant yourself into a corner (saying you don’t want X — in this case RAI). Focus on how to make it work for you if that is your only choice. It’s the pits that you might only have one choice — not really a choice after all. But if it can make you well again, you need to grab it and go for it with gusto.

Sending hugs.

[Bobbi]

in reply to: Adrenals and Antibodies #1171589

I am sorry that you are feeling under par. But a word of caution. Just because we “have” Graves, it doesn’t mean that other things cannot go wrong in our bodies that have little or nothing to do with “thyroid.” If, however, we consult our doctors and insist that our thyroid levels “must be off” because of the way we are feeling, and the doctor checks those levels and finds they are OK, then the doctor’s thinking typically stops with the statement “It’s not your thyroid.” It is important to get the doctor’s problem solving mode back on track by then asking “Well then, what IS IT???” Or words to that effect.

An illustration. A year or so after my treatment for Graves, my digestion was “off.” Then I began having some abdominal pain. It was determined that I had gallbladder disease, and I had my gall bladder removed. I could not believe how much better I felt. There had been niggling “off” issues for months. Had I only been focussed on “thyroid,” I could have suffered longer before we found out about the problem.

So, it’s important to cast a wider net when we are not feeling well. It could be thyroid. That’s what I usually have my doctor look at first. It’s such an easy fix if whatever it is is caused by my thyroid levels. But if they are OK, we look for something else.

[Bobbi]

in reply to: Deep thoughts for a newly diagnosed – work, immunity, and personality #1171635

It is highly important to keep in mind that while we are hyperthyroid, we are ILL. Would you expect to be able to perform full tilt at your job or anything else when you are really sick? With whatever? Flu? Migraine? Of course not. So, right now you are sick. Treat yourself the way you would counsel your best friend to behave if he/she felt as lousy as you do.

On the same line of reasoning, when someone is actively ill, their body’s immune system typically fails to protect them from the ambient viral and bacterial environment. People who are already sick, come down with viruses and other problems more quickly. Once you get your thyroid levels controlled, and your body has had a chance to heal, you will not experience more sickness than normal for you. We are not immuno-deficient when we “have” Graves. We CAN be immuno-deficient when we are hyperthyroid, and sick, in other words.

Antithyroid meds can reduce the white blood cell count. This is one of the potential, adverse side effects. This does not happen routinely. Only in a very small percentage of patients taking the meds. But it is something to take into consideration if you have been on them and experience an infection. The WBC count sometimes needs to be checked.

[Bobbi]

in reply to: Nausea and vomiting? #1171648

I have a GP that responds to issues like this one by doing an elimination diet type of thing to figure out what might be going on. A number of years ago I was plagued by nausea, and he had me discontinue a group of foods. It turned out, though, that the culprit was sorbitol — one of the diet sweeteners used in a lot of “sugar free” products ….like chewing gum, ice cream, etc. This is known to cause intestinal upset in some folks, but it was a surprise to my doctor that it caused me to experience nausea. My son, too, if he consumes too much of it at one sitting. Anyway, it sounds like it might be productive for you to brainstorm along these lines. It might not be sorbitol that is causing your problem, but you might discover something else.

[Bobbi]

in reply to: How long to normal after RAI? #1171591

There’s no concrete answer to this question, catstuart7. I felt immensely better within a month after RAI than I had while I was hyperthyroid. I remember sitting in my endo’s office, hearing her say that this was the “worst” I would feel, and telling her that I felt pretty darned good! I always looked at “progress” rather than for some absolute sense of “normal,” which probably helped me to tide whatever months it took to be truly “normal” feeling after treatment. Other people, looking for other things, have reported longer periods of time until they felt well again. Some folks, for example, feel fine while hyper. They haven’t gotten as sick as I was. So, they don’t necessarily feel as well at the lower end of things as they think they should. All of it is subjective. Which is why there probably is no concrete answer.

[Bobbi]

in reply to: Low TSH normal T3 and T4 #1171607

The TSH is the hormone from the pituitary (Thyroid Stimulating Hormone). The pituitary acts as a type of thermostat for thyroid behavior. If the pituitary senses too much hormone, it lowers its production of TSH. If it detects too little thyroid hormone, it increases its production trying to stimulate thyroid cells to produce more.

And, it acts as a type of running average. It does not read the current levels and instantly change its levels of TSH. In other words, there is a lag between attaining (or losing) normal levels of thyroid hormone, and the pituitary showing the change: the weight of the previous levels is still holding it back somewhat.

It is theoretically possible for our thyroid hormone levels to have reached normal at about the same time as the blood test. The TSH will not register as “normal” until the values have been constantly “normal” for a while.

But, if you continue to feel objective hyper symptoms and your thyroid levels are “normal” but your TSH is still suppressed, it might mean that whatever those normal thyroid values are, they are not quite “normal” for YOU. There’s a big range of normal for thyroxin (T4) for example. Some of us feel better at some parts of that normal but not at others.

Whatever, if you are experiencing troubling symptoms like chest tightness and weak muscles, you should make sure to inform your doctor.

[Bobbi]

in reply to: Can a thyroid “regenerate”? #1171628

I’ve heard people talk about this, genuineruby, but I know of no “proof.”

[Bobbi]

in reply to: Future weight gain? #1171595

There is no rational reason why RAI should provide more weight gain than surgical removal of the thyroid OR taking antithyroid meds to control thyroid levels.

We live in a country where obesity is sometimes now referred to as an epidemic. So, we have to view reports about weight gain in Graves patients (which are a miniscule member of that larger population) in light of the percentage of our population that is reported to be 1) overweight or 2) obese. According to government sources touted in the news in the past year, that percentage of overweight is two-thirds of the population, with one-third of them being obese. Until Graves patients exceed that percentage, the causal link cannot be established. So far, even self-reporting does not reach that range.

After my RAI, when I was serious about eliminating extra calories, my weight stayed fairly constant — until I stopped eliminating empty calories. Some of the weight we lose is muscle loss, which is horrible weight to lose. Muscle burns more calories, even at rest than other body tissues. So when we lose muscle, our metabolism is lowered. AFter we get treated for hyperthyroidism, some (if not all) of that muscle returns and it looks like weight gain. But it is GOOD weight to gain. One of my obese friends (not due to thyroid) started working out regularly on the advise — no demands– of her doctor. The doctor also commanded her to stay off the scales for the first six weeks. Why? Because the exercise was going to increase her muscle and she would not see weight loss and could get discouraged. Recently, I eliminated empty calories again, and I’ve seen nine months of gradual weight loss. It isn’t magic. It takes work and consistency.

[Bobbi]

in reply to: New for forum, diagnosed with Graves and Hyperactive thyroid #1171575

Pain after RAI? The only pain associated with it is a soreness in the neck area (where the thyroid is). Some people report sufficient pain to have to take pain meds (typically over-the-counter type). I didn’t even need that. It was just a sore throat of sorts. If you consider that a body tissue is being “removed,” then you will understand the pain and perhaps not over-react to it in fear. You would have some pain from a thyroidectomy too. Although, even that is not reported to be hugely uncomfortable.

[Bobbi]

in reply to: Adrenals and Antibodies #1171587

Getting up a list of questions to ask the endo is a good thing.

While there may be antibodies that affect the adrenal glands, our antithyroid antibodies do not. Antibodies are very specific in the functions they have.

I am not sure how long you have been treated for your hyperthyroidism, but one thing you need to know is that just “getting to normal” levels of hormone does not make us feel instantly normal again. Our bodies took a beating while hyperthyroid, and it takes months AT normal levels of hormone for the body to heal.

If you are experiencing itchiness you might be having an allergic reaction to something. Itchy eyelids (along with general itching elsewhere) was one of the signs of a sulfa allergy that I had, which reproduced itself when I was accidentally given a different medicine that was in the sulfa family. Be sure to mention it to your doctor.

And the only way to tell whether or not that thyroid peroxidase antibody level was high or not, is to look at your actual lab test paper. They indicate on the report what the normal range is and whether a value falls outside the range, high or low. It’s not a bad idea to start a file of your test results: typically our doctors will make us a copy of our own to keep.

[Bobbi]

in reply to: Levothyroxine and Graves Interraction #1171583

Well, rkam2616, some folks who are hyper DO gain weight instead of losing it. Losing weight is not a reliable symptom of hyper levels of thyroid hormone.
We also feel fatigue while hyperthyroid. It is not a condition that leaves us feeling “energized” over time. Constipation, on the other hand, is most associated with the hypo state, but there can be other things causing that as well.

Levothyroxine IS thyroid hormone. It is chemically identical to our body’s own T4. So, if you are on too high a dose of it it will give you hyper symptoms.

One other point: TSH stands for Thyroid STimulating Hormone, and it comes not from the thyroid but from the pituitary gland. The pituitary acts as a kind of “thermostat” for thyroid hormone levels. If the pituitary senses too much thyroid hormone (whether from levothyroxin, or from normal thyroid production) it reduces its TSH trying to lower the levels of thyroid in the blood. If it doesn’t sense enough, it raises it’s production of TSH to try to stimulate thyroid cells to produce more hormone.

I do hope you are feeling much better soon.

[Author]

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