[Bobbi]

in reply to: Blood Work Shows I’m HYPO just 6 Weeks Post RAI #1066763

Some weight gain is normal when our hyperthyroid condition gets "fixed." Some weight gain is actually GOOD weight to gain. Why? Because when we are hyperthyroid some portion of the weight we lost was lost muscle. Muscle weighs more than other tissues, and while hyper we tend to have it waste away from our legs, arms, chests, and elsewhere. Having strong muscle keeps our metabolisms up; conversely, losing muscle lowers our metabolism, which means we cannot eat as much without gaining weight.

When we regain normal levels of thyroid hormone in our bodies, muscle gradually comes back. This will appear as weight gain. It is not strong muscle until we have conditioned it with prudent exercise. But, over time, it will regain its strength and it will raise our metabolisms allowing us to eat more without gaining weight.

Now, undoubtedly, you haven’t seen 9 pounds of muscle come back on in six weeks, but some of the weight gain could still be due to lost muscle and the lowered metabolism (you are no longer hyperthyroid), and the fact that you cannot (or should not) get the kind of exercise you normally would if you were healthy. It takes time and patience while the body is going through all of these changes. If you are eating wisely, and keeping nutrition in the forefront, and start getting exercise again, when your doctor tells you it is safe, you should find that, over time, your weight will become normal again.

The Levoxyl "IS" thyroid hormone. It is chemically identical to the body’s own T4, which converts to T3 as needed by the cells. Getting the right amount will put you at a normal level of hormone. You will not "be" hypothyroid if you are on the right amount of replacement hormone, and it will allow your body to function normally again.

[Bobbi]

in reply to: Armour Thyroid vs. Synthroid #1066769

I don’t know about its availability. I have seen occasional posts here on the board (although not recently) about people taking it.

Armour, as I understand it, is made up of animal thyroids. Rightly or wrongly, I have always imagined the process of making the pills for Armour as something similar to making hamburger. Animal thyroids are collected, ground up, processed into pill form. Because whole thyroids are being used, and thyroids store their hormone for future use, there is a full compliment of thyroid hormone in the armour product. By this I mean all of the various chemical compounds that the thyroid makes at any point in time — and there are several — are present in the final Armour product. The major components, though, would be T3 and T4.

Synthroid and the other similar replacement hormones are made up of man-made chemicals. The man-made chemicals are identical to our body’s own T4. Approximately 80% of a thyroid gland’s hormonal output is T4. T4 is actually a "pro-hormone" inasmuch as it cannot get into cells to stimulate cell metabolism unless it is converted into T3. It must be converted into T3. It constantly being converted into T3 in a variety of places throughout the body, but primarily in the liver. Our bodies are designed to convert T4 into T3. So in that respect, the fellow you heard, or read, was wrong. We do need T3, but the body does convert T4 into T3.

There has been discussion, as you have found, about whether it is better to take the synthetic replacement products that are only T4 or whether Armour is more "natural." Indeed, in the earliest days, those of us without thyroids would have been kept alive by having animal thyroid glands slipped under the skin, allowing their hormone to pass into our bodies. The next step was to make pills out of animal thyroids. But how fresh were the thyroids? How to adjust for necessary dose? Was there degrading of the hormone content over time? These questions followed the Armour-type products when they started being used. My understanding was that there were consistency issues with the Armour-like products early on, and that doctors decided the safer replacement route was via synthetics. That problem was apparently resolved, I think — but I do not know for sure.

The problem doctors sometimes find with any product containing T3 is that T3 is extremely potent, while having a very short life-span. Taking it in a pill provides "oomph" when you take it, but not necessarily when your body needs it most. And in folks with any underlying heart issues, it can be dangerous. T4 provides a reservoir of hormone that is inactive until converted. It is there, waiting to be converted when the body needs it. It isn’t pumped into the cells the minute you take it. That, at least is the explanation given to me by my endo.

Talk with your own doctor — the doctor who knows YOUR medical condition. But if your doctor prefers to use synthroid-like products, please know that they DO convert to T3 in your body.

Wishing you well,

[Bobbi]

in reply to: new to replacement – couple of questions #1066909

I suppose my use of the word "safest" was not appropriate, inasmuch as I didn’t mean "less dangerous". I meant that taking the replacement first thing in the morning and then waiting at least a half an hour before eating anything is the surest way of getting in a consistent dose of replacement, without other foods (which tend to be fortified with vitamins and minerals) interfering willy nilly with the amount of hormone that makes it into your blood. What you are working towards is consistency: a dose of hormone that provides you with the right amount all the time, without having to constantly adjust things. If you find that you are having lots of trouble over time, getting that consistent dose, then you need to consider taking the pill in the a.m., on a completely empty stomach, and waiting to eat.

As to your other question about whether or not you should wait the two additional weeks your doctor recommended before getting your blood checked: I know it is difficult when you think something is "off" to wait. I’ve been there. And I didn’t wait. And I prolonged the agony. By going in too soon, and getting an adjustment too soon, I ended up complicating my situation. So, it took longer to get the right dose. After that episode, I made myself wait the amount of time suggested by my doctor. So, based on my experience, I would suggest you wait.

[Bobbi]

in reply to: question @ pregnancy, the baby and thyroid #1066807

The most common time for developing Graves (and, perhaps, autoimmune issues in general) is associated in women with puberty, pregnancy or menopause. This is "on average" and not a "rule." Obviously, some people develop the disease at other points in their lives that have nothing to do with hormonal changes. (And here, the mention of hormone means estrogen, progestin, etc., not necessarily thyroid hormone.)

During pregnancy, hormonal changes prevail, but it is also thought that the woman’s body suppresses the immune system in order to protect the developing baby from antibody attack from the mother’s body. It is very common to hear of women developing autoimmune issues during or just after pregnancy.

I have never heard of a backloop feedback from the placenta, but that doesn’t mean that it doesn’t exist. There are undoubtedly many "feedback" mechanisms at work once a baby is delivered, for the mother’s body to go back to pre-pregnancy "normal." The body is hugely complex.

[Bobbi]

in reply to: strengths of levothyroxine #1066810

Because the replacement hormone stays biologically active in the body for so long, it is possible to take different doses on different days, and "split the difference." The problem with that is that it adds another layer of complication to the process, so I suspect our doctors prefer to find out first if one of the standard doses works as well.

[Bobbi]

in reply to: question on labs #1066822

One other reason why using the generics for replacement hormone bothers me — the generic that your pharmacy buys one year, or one month, might be different from the generic that they buy the next. Yes, the active ingredients are the same, but what about all the other stuff, and how is it absorbed? Our endos will have us in after six weeks to three months if we change BRANDS to double check that our levels are appropriate. And sometimes they need to make adjustments. How much more complicated is it if the generics are changing?

[Bobbi]

in reply to: question on labs #1066818

Did your doctor change your prescription to the generic? Or did the pharmacy/your insurance company? It makes a difference. If your doctor changed it, you might want to ask about it. If your pharmacy or insurance company did it, they should not have. It is becoming automatic, with insurance companies paying less for brand drugs, for our pharmacies to fill with generics, but many of our endos are not convinced that the generics truly work exactly the same as the brands.

Our docs will sometimes look at different aspects of things (i.e. look at Free T4 as opposed to regular T4) to give them clues about what is going on. For example, I remember when I was symptomatic, early on in my diagnosis, and my doctor looked carefully at the free thyroid levels. Since adjusting to replacement hormone, the tests have been exclusively for TSH levels unless I am symptomatic again, in which case, sometimes it is a complete thyroid panel.

Looking at FreeT4, for example, tells the doctor how much of the T4 that is in your blood is "available" to be converted to T3 and used in the cells. Not all of the T3 and T4 that is in our blood is available for use. Some of it — a good percentage a lot of times — is tied to other protein compounds and the cells cannot use it. So the lab tests involved are complicated. None of us here can begin to do anything other than explain what the test looks for, and perhaps why it is looked for. Interpreting the results, or being qualified to judge which tests are "best" is not something we can do.

[Bobbi]

in reply to: Hi, new here #1066868

Hi, Lisa:

Lots of us here have had our thyroids removed, and are on replacement hormone like synthroid. I have been on it for 12 years. The replacement hormone IS thyroid hormone. It is chemically identical to our body’s own thyroxin (T4). As a result, our bodies are designed to utilize it. The only side effect issues come from taking too much of it (we become hyperthyroid again), or taking too little (we become hypothyroid).

[Bobbi]

in reply to: Too much levoxyl? #1066952

Thyroxin (T4) — and by extension the replacement hormone levothyroxin, because it is chemically identical — has a half life of six and three quarters DAYS. That means that after just under 7 days, half of the dose that we took 7 days ago is still viable in the body. (That’s how hormone life is measured, in half-life periods.) So, when we take replacement hormone any that we do not use today is "saved." The dose of replacement gradually builds up until we’ve got a reservoir that is more or less consistent. What we don’t use one day is saved; what we use excess of another day can be taken from the reserved supplies. That’s a simplification, obviously, but I think it gets to the gist of things.

As to whether or not you might be experiencing hyperthyroid levels of hormone while on replacement, the obvious answer is "yes." But to find out definitely, you would need a blood test. I actually had an episode of toxic levels of thyroid, while on replacement, about four or five years after starting replacement hormone. I had been on a constant dose for a year or more, and all of a sudden (and for only a few months) it was suddenly too much. We do not necessarily lose every last thyroid cell with our RAI treatment. Any that are left are still producing hormone and can be revved up by elevated antibody levels. So, when in doubt, get your levels checked. Not every episode of "hyperness" that I’ve had checked out through the years has proven to be "real" (i.e. actually way too much thyroid hormone), but being hyperthyroid isn’t safe, and getting things checked when it feels all wrong is an easy way to either fix things, or get reassurance.

[Bobbi]

in reply to: Graves and Future life #1066941

You are absolutely right, Corinne. Good luck, and keep us informed of how you are doing.

[Bobbi]

in reply to: Hi, new here #1066865

Hi, Mifis, and welcome to our board.

It is very important that you find a doctor you can actually see if things start going wonky on you. If you have a primary care physician, they can do blood tests (in other words, you wouldn’t have to wait for the endo appointment) to see if there is any reason for current concern. It is important to stay on top of things, but trust me, we cannot tell, all by ourselves, how big or small a dose of a medication we need to be on. Because we know our own bodies we can tell that something is wrong, so we sometimes need to nag. But the judgment call about medication dosages needs to be left up to a doctor we trust, a doctor who pays attention. If you do not trust your endo, or your endo does not pay attention, please find another one. With Graves, we are in for the long haul, and we need a doctor we can work with and trust.

One thing you need to know is that weight loss, when we are hyperthyroid, is not "good" weight loss because a good percentage of it comes from loss of muscle. We especially lose from the larger muscles in the legs, arms and chest. Muscle burns more calories than other tissues in the body, even when they are not "working"/i.e. exercising. So losing muscle means that we can not eat as much as we normally would withough gaining weight. When we get to normal levels of thyroid hormone (and possibly this works even at hypo levels of thyroid hormone), the muscle starts to slowly return. This appears to us as weight gain, even if we are not gaining weight because we are eating too much. The returning muscle is "good" weight gain, because it is going to raise your metabolism, allowing you to eat more. To make a complex story short and simple, you cannot tell by the scales alone whether or not any weight you lose or gain is good weight until you have been stabilized AT normal levels of thyroid hormone for MONTHS. Also, once the muscle returns, it is not strong, healthy muscle unless we work at strengthening it. But you must, at this point, wait until your doctor tells you that it is safe to exercise, because exercising while going through what you are experiencing can be dangerous in many ways. (Remember the heart, too, is a muscle essentially, and it is adversely impacted as well.)

As mentioned to you before, it might be a good idea for you to consult with an opthamologist. If you are developing the eye disease, an endo is not the doctor who treats it, and treating the thyroid imbalance does not treat Thyroid Eye Disease (TED). Many of us develop "some" symptoms of the eye disease, and getting some symptoms does not mean that the disease will become bad. But we need to work with an opthamologist when we do have overt eye symptoms. In the meantime, if your eyes are uncomfortable, try using artificial tears. Thyroid disease can affect the quality of our tears, making them less of a lubricant for the eyes than they used to be. Our eyes dry our, and become vulnerable to corneal abrasions unless we use artificial tear drops. (Not the eye drops designed for allergies or "getting red out.")

I hope this information helps,

[Bobbi]

in reply to: Grave’s and enlarged Lymphs #1066860

In all of my reading about Graves hyperthyroidism, and in my own experience, enlarged lymph nodes were not a symptom, nor an issue. I would nag the doctors about what IS causing this situation, and not assume that it is associated with too much thyroid hormone.

[Bobbi]

in reply to: Graves Disease and Exposure to Someone with Tuberculosis #1066899

Having an autoimmune disease does not mean your immune system is "compromised." It has made a mistake and created an antibody to a part of our own body, but it is not weakened necessarily.

Being sick with too much thyroid hormone can make us more susceptible to disease. Having a low white cell count due to an ATD or other drug can make us more susceptible to disease. But if we are at normal levels of thyroid hormone, and our bodies have had a chance to heal from being hyperthyroid, there is no reason to expect that we will be more sick than anyone else in the community.

[Bobbi]

in reply to: herbal remedies #1066893

You need to start out by making a separation between the concept of Graves’ hyperthyroidism and the eye disease (commonly known, now, as Thyroid Eye Disease — TED — but also still called Graves’ Eye Disease by some). The eye disease does not give you weight loss, frequent bowel movements or insomnia. Those things are typically associated with thyroid levels (or stress, or other types of illness, etc.). The eye disease affects the eye muscles, causing the protrusion in some cases, double vision, etc.

It is VERY common for our doctors to take a watch and see approach to the eye disease. It is VERY frustrating. But, having been there, scared, wishing for some treatment that would stop the progression of things, I can tell you that the disease does indeed eventually abate, just like I’d been told it would. There is a hot phase when the symptoms seem to run amok, and then things quiet down and symptoms subside. All without medical intervention (at least in my case). More severe cases do need the medical interventions, but our doctors consider those options to have such dire, common side effects that they prefer to watch and wait and only use them if our vision is in peril.

[Bobbi]

in reply to: Pregnancy and Medication #1066915

Even though our bodies often need less and less of the ATDs as we go through pregnancy, it is NOT a good idea to allow oneself to remain hyperthyroid, just to avoid the pitfalls of the drugs, or RAI/surgery, etc. For one thing, miscarriages are more common when someone’s thyroid hormone levels are wonky. For another, thyroid storm can occur suddenly when one is hyperthyroid. TS is a life-threatening condition — and in all likelihood would also threaten the life of the baby in utero. There are other health ramifications of allowing hyper levels to persist. So if you are hyperthyroid, you need treatment both for your health and for the safety of the baby.

You need to know yourself to determine whether or not you pursue the ATDs while pregnant. Some women stop all alcohol, stop smoking, watch the foods eating like a hawk, etc, etc., all with the health of the baby in mind. For someone like that, taking drugs while pregnant might prey on the mind. And there would be a mighty temptation to stop the meds to protect the child. (BAD idea, if only because it doesn’t, really.) If this paragraph describes you, you probably would feel more comfortable taking replacement hormone (i.e. having RAI or surgery and waiting a few months before becoming pregnant). Replacement hormone IS thyroid hormone. It is chemically identical to thyroid hormone. The only side effect issues to taking it involve taking too much (hyperthyroid) or too little (hypothyroid).

Bottom line: if your doctor has indicated that the level of ATD you need to protect your health is likely to be safe for the baby, then you have a choice. If "most likely" isn’t good enough for you, then do consider deferring the pregnancy, having surgery or RAI, and going onto replacement hormone.

Wishing you well,

[Author]

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