Forum Replies Created
-
AuthorPosts
-
in reply to: overnight correction of double vision #1171276
My double vision went in and out so frequently that I could never wear prisms. It is possible that your TED is going into the remission stage, when the problems tend to go away, at least in part. That would be a lovely turn of events.
Hi, etleon05, and welcome to our board.
The numbers themselves don’t tell you much. Each lab has a standard of normal that can be different from other labs. So you need to look at your own results where the lab posts it’s own range of “normal” values and indicates whether or not your values are out of range, and if so whether they are high or low.
So, it is helpful to get copies of your lab results, so that you can watch what is going on. Interpretting them, though, requires a doctor.What the various items are on the lab report:
T3 and T4 are two thyroid hormones. Actually, T4 is sometimes considered a “pro-hormone” because it must be converted into T3 for the cells in the body to be able to use it. Thyroid hormone molecules are either “free” or bound up — tied onto — other molecules in the blood. It is the level of free hormone that is available to the cells, so when we are newly diagnosed, free levels of the two hormones are checked. Later on in treatment these tests typically are not done. All your doctor meant by having “toxic” levels of the hormones is that they are making you ill. Obviously, right?
TSH is Thyroid Stimulating Hormone, and it comes from the pituitary gland. The endocrine system has a series of checks and balances that regulate the levels of our various hormones. In the case of the thyroid, the pituitary gland acts as a type of thermostat. If the pituitary detects too high a level of thyroid hormone, it LOWERS its production of TSH; if it detects too low a level of thyroid hormone, it raises its production of TSH. The TSH test in labs can detect miniscule amounts of it, so it is used as the predominant gauge of our thyroid levels. If you look at your lab report, you may see that the report sometimes says that TSH is “<" 0.01. That "less than" sign means that the lab's ability to detect TSH -- AT ALL -- is gone. That's typically a sign that our thyroid levels are hugely out of whack high. Skipping meds is not something you should do from here on out. At all. No matter what med you are on. I realize that it takes some mental adjustments and especially if we start to feel well, the tendency is to think the meds have “fixed” us, and we don’t need them any more, or to forget the need for them. Conversely, if we start to feel “off” and blame the med, the tendency will be to “tinker” with the dose. Try to get into a routine as to when you take them. We have to be completely consistent with our taking of the meds for the test results to be accurate. And it is only if they are accurate that the doctor has the right information on which to make a treatment decision. That said, I don’t know if missing two days makes a huge difference. That would be something to ask the doctor. As to whether or not you should get a second opinion. That is always an option.
But your doctor’s advice about slowing down, taking care of yourself is important to heed. Right now, your levels are out of whack, and they are making your body ill. They can cause life-threatening heart issues. If your doctor says “slow down until we get this under control,” please pay attention.I think the main focus of your issue should be that the antithyroid drugs didn’t work to control your thyroid hormone levels. So, you have continued to be ill, at some level or other during a lot of the past two years. That really isn’t good. So trying another approach makes ultimate sense to me.
With you having some level of TED already, did either of your doctors discuss putting you on a short course of prednisone around the time of the RAI? Not everyone can do this, perhaps, but it is thought(by some physicians) that it adds an extra layer of protection for the eye disease when we are doing RAI. One study has suggested that about 16% of people who do RAI experience a “temporary” increase in their TED symptoms after RAI. Other studies have not, however, duplicated those results, so whether it is still considered an appropriate guide.
I did RAI (as did my mother), and I am quite pleased with the results. It gave me back my health. It gave my mom her health back. I have had occasional “blips” in levels, which are easily adjusted with the replacement hormone. My mom was on one dose of replacement for about thirty years with no blips that I ever heard of. I think replacement hormone works just fine. And it doesn’t bring with the the array of potential adverse side effects that other drugs do. It is chemically identical to our body’s own T4, so the body is designed to use it, without creating toxic by-products, as with other drugs. The “side effects” listed in the drug manuals, if you notice, have to do with “being” hyperthyroid or hypothyroid while on the replacement. If you are on too large a dose, you will experience hyper symptoms at some level or other. If you are on too small a dose, you will experience hypo symptoms (increased hair loss, for example). If you are on the appropriate dose, these symptoms go away. It does take time at the proper dose for our bodies to heal from whatever was out-of-whack when we were hyper — or undergoing hormonal roller coasters — but over time, it works well.
As for allergies to the dyes or inert products in the pills. While that happens occasionally, it is rare, and not life-threatening. They can make the pills without dyes. And there are different brands of the replacement hormone that use different “fillers” to make the pill. I have heard that people who are lactose intolerant sometimes have a problem with one of the replacement brands. But there is another brand that contains no lactose. So, typically, it can be worked around. It might be necessary for you though to stick to a brand name rather than utilize generics, if you find that you react to some of the pills, but not others.
I do wish you good luck with your treatment. I hope you find yourself feeling much better over time.
in reply to: TSH numbers #11712461) There is no way for us to know whether those lab results are normal are not. Every lab has its own method of testing for the various substances, and as a result they have their own standards of normal and abnormal. k It will be listed on the report itself.
2) Even if they are normal: The ONLY people whose advice you should be accepting about lab interpretations are fully qualified doctors. If you do not trust your own doctors, you need to find another doctor, an endocrinologist preferably, to consult. Yes, it would cost you some money most likely. But a second opinion from someone qualified is the best choice. Interpretations from amateurs online is your worst choice.
3) For ongoing cases of Graves, it is not at all unusual to use TSH readings alone. Free T4 has never been a part of my lab results since the early days of my journey with Graves.
in reply to: 7 years post RAI and suddenly very high TSH #1171236I’m sorry to hear about your mom’s illness.
I have had fluctuations in the amount of thyroid hormone that I need from time to time in the years since my RAI. I have had to lower it for a few months, only to raise it back up again later. Keep in mind that we are regulating thyroid levels manually: our bodies don’t adjust the amount of thyroid hormone, the way normal bodies do. There can be things going on in the body that require more/less hormone than normal. Sometimes, we have residual thyroid tissue left, and antibody levels can affect that tissue. These events don’t happen often, but it is not necessarily unusual, either. It is a good thing that you are on top of things, and getting your replacement dose adjusted.
I don’t know if you were warned, Oberon, but approximately one week after RAI we become more hyper than ever as damaged thyroid cells start dumping their stored supplies of thyroid hormone into the body. This is not thyroid “storm.” In storm, the thyroid cells are manufacturing new hormone. After RAI the cells are simply releasing already made hormone into the body, and are not making new hormone. Anyway, it doesn’t last for many days, but it can be a bit scarey if you are not anticipating it.
in reply to: Test results consistent with Graves’ #1171224The normal ranges can vary from one lab to another, which is why we tell people to get a copy of their own lab tests. The normal ranges are determined by how the lab does the test: what materials are used, etc. So what is “normal” for one lab may fall outside of normal for another. The lab report, for each patient, tells what the normal range is, and where that person’s test results are located. By looking at the lab tests over time, it can help us to get a handle on how our own treatment is going, but it doesn’t do much to help us tell others about theirs.
ElisaK: Yes, the propanolol is definitely a hazard to the treatment of asthma or other types of extreme allergic conditions. It interferes with the chemicals that are in the inhalers, or in the epi-pens etc. making them less effective. That does not necessarily mean that you cannot take the propanolol, but you should talk with your doctors about the situation. I have occasional (rare) asthma issues, and my allergist was OK with me taking a small dose of the propanolol. But if your asthma is significant, it might not be OK. Talk with your doctor, please.
You MUST treat the hyperthyroidism with one of the two main known effective options: either the methimazole, or removal of the thyroid. There are no alternative treatments that have been demonstrated to give us back our health. Some folks do use alternatives ALONG WITH a standard treatment to try to help, but only with the knowledge and approval of the doctor is that OK, because some things can interfere. (For example, I overheard a student in an oriental medicine clinic suggesting a huge dose of iodine as a treatment for Graves. My endo — when I checked that with her — was appalled. Apparently, the results of such a “treatment” are totally unpredictable, and often result in rampaging hyper symptoms.)
I know that you would much rather that this whole episode in your life would disappear, but it won’t. I will supply a “glass half full” perspective for you — which is real. Our treatments work to make us healthy again. Not all of us can safely do the drugs; not all of us can safely do RAI; not all of us can safely do surgery. But out of the three options, typically one of them will work well for us, and we DO regain our health, if we do not let hyperthyroidism drag out for too long.
Sending hugs,
Oberon: telling you that your thyroid will eventually die off undoubtedly did NOT mean that you could wait it out. Yes, your symptoms are mild right now. You are so fortunate. They won’t stay that way. As hyperthyroid continues we become weaker and weaker. Muscles waste away. Keep in mind that the heart is a muscle. We lose bone. Permanently. Throughout the years, I’ve corresponded here with people who were permanently damaged by being hyperthyroid too long. Usually, they went undiagnosed. Sometimes they ignored the diagnosis. But nothing good came of it, either way.
in reply to: Muscle cramps – Ouch #1171215Hi, mvk, and welcome to our board.
Anxiety is a typical symptom of being hyper — hopefully it will go away as soon as you get back to controlled normal levels of hormone.
The best food advice is really to eat for nutrition right now. Your body has been working overtime, and depleting it’s resources. Eating nourishing food, dense with vitamins and minerals, is going to be a huge help. I gave up “empty calories” for a while, which also helped with weight issues. Some online sites will try to steer you away from veggies containing “goitrogens” — substances thought (or possibly known) to cause enlargement of the thyroid (i.e. goiter), but when I checked that with my endo, she told me that you would need to eat truckloads of the foods to make any type of impact: in other words, it would be physically impossible.
Wishing you good luck, and better health soon.
Kimberly has been on the antithyroid drugs (like carbamazole and PTU) for a number of years, with reasonably controlled thyroid hormone levels.
I, on the other hand, was on PTU for a while, but reacted badly to it. I did not do surgery. I chose to remove my thyroid via RAI. Shirley, whose posts you might see here, had her thyroid surgically removed decades ago.
The antithyroid meds (ATDs we call them here) typically work to control thyroid hormone levels. They act as a chemical block to the production of thyroid hormone. Some folks are allergic to these drugs. In a very small percentage of patients there are adverse side effects (liver issues or lowered white blood cell count). But if you can tolerate them, they hold out the possibility of returning you to health.
Hi, Gem. I am sorry you are having such a horrid time.
To answer your question, I think carbamazole is simply the generic name for the drug we call methimazole in the U.S. You could ask you pharmacist, if you are curious.
You should expect to get well again. If the drugs do not work to bring your thyroid levels under control, there is always the option of removing your thyroid. There are two ways of doing that: radioactive iodine (RAI) or surgical removal. AFter the thyroid gets removed, we go on replacement hormone which is marketed under a variety of brand names and the generic is levothyroxin. The replacement is chemically identical to our body’s own T4, and works pretty well.
The important thing is to be on a treatment plan that is controlling your thyroid hormone levels. The drug treatment usually works, but if it does not, you need to talk with your physicians about an alternative.
Perhaps some factual information about I131 will help, Oberon. Keep in mind that the precautions you will get have to do with preventing other people from receiving UNNECESSARY radiation exposure. That does not mean that the exposure is harmful to them all by itself. But radiation exposure is cumulative throughout our live span. Today’s RAI has to be added to yesterday’s layabout on the beach, added to the chest xray three years ago, added to last month’s dental xray, added to your vacation on an airplane, etc. etc. etc. Avoiding unnecessary exposure is wise. The dental technician is required to leave the room before the xray is taken for precisely the same reason. The dental xray dose is miniscule, but over time (and he/she gives many dental xrays) it could add up to a problematic amount and make him/her sick.
First of all, it is very soluble in water. Any RAI that does not get taken into your thyroid cells will be eliminated from your body via urine, sweat and saliva within approximately 48 hours. (Double check me on this, because I couldn’t find it in my notes, so your own nuclear med doc can tell you more precisely.) This explains the precautions that you get about double flushing of the toilet, using disposable eating utensils, and double bagging that trash, etc. (Although I was never told to double bag.)
Second, it has a half life of 8.1 days. Radioactive materials have their “life span” measured in half-life terms. After approximately 5 half lives the material is considered essentially gone because so little of it will remain. Some radioactive substances have half-lives measured in thousands of years. So a half-life of 8.1 days is really short. Not the shortest, but really short. So, what that means is that after 8.1 days, half of the dose that made it in to your thyroid (or trash) is left. After 16.2 days, one quarter of the dose is still left. After 24.3 days, one-eighth, and so on. For Graves patients the dose is relatively small to begin with compared with thyroid cancer patients. And yet the long-term studies of its impact on our health (long-term health) have shown it to be reasonably safe, even for thyroid cancer patients.
And, if you need to travel on a plane, you might get a letter from your doctor about the RAI. I have heard — online, which is not necessarily the best source of factual information — of people needing such a note if they are travelling relatively shortly after their RAI treatment. It might be totally unnecessary, but having a note would hlep to eliminate any TSA hassle.
I thought that there were two (at least) different antithyroid antibodies. One, as in Hashimotos, which blocks thyroid activity (hence hypo), and another, different antibody (Graves) which stimulates thyroid activity. Why would a stimulating antibody start “blocking” thyroid function?
Many people online, Oberon, confuse our RAI with the dose thyroid cancer patients get and that’s where at least some of the different “recommendations” after RAI come in. Cancer patients get many, many times bigger a dose than we do, even though they’ve already (typically) had their thyroid surgically removed. As a result, their bodies are eliminating much larger quantities of radioactive materials for a few days than we are. Again typically. What you have to do is talk with YOUR physicians and nuclear med doctors to find out what you should do, based on your dose.
It has always been my understanding that the constant antibody “attack” on our thyroid cells eventually wears them out, hence the natural progression of the disease is for us to go hypothyroid eventually. I know there are people online who suggest differently. But from my study of the disease, and things that I have read from reputable sources, it is likely that, over time, we will go hypo. Your best source, again, is your doctor.
Synthroid IS thyroid hormone. It is chemically identical to thyroxin, which is the form of thyroid hormone that the body naturally breaks down into T3 which is the active hormone for the cells to use. I tend to think of it as a “timed-release” T3. It has a relatively long life span: hormone “life” is measured (much like radioactive substances) in “half-life” terms. So the half-life of thyroxine (T4) is approximately six and three-quarters days. After that period of time, half of the original amount is still available for the body to use. As a result, we develop sort of a pool of hormone ready to use when we need it. I’ve been on it since 1997, and I think it works really well.
-
AuthorPosts
