Forum Replies Created
-
AuthorPosts
-
in reply to: Waiting for Affirmative Diagnosis #1170901
Just an FYI: many of our Graves symptoms are very similar to menopause symptoms — changes in period, night sweats, heat intolerance, etc. While you may be starting menopause in fact, the Graves may be responsible for the intensity of symptoms. Or, the symptoms might go away completely for a while, if you are not yet in menopause.
in reply to: Hello! Newly Diagnosed & New to Forum #1170906Hi, Alexis, and welcome to our board.
We women typically blossom with Graves at times when we are undergoing major hormonal changes — i.e. puberty, pregnancy/childbirth, or menopause. Statistically, that the the most likely time for us to get our diagnosis. I think it’s particularly hard to endure when we have little ones in our care. I do hope you are feeling better soon.
in reply to: Finally good numbers after 5+ years treatment #1170853Hi, Harpy: How great that your partner is finally feeling well and is encouraged by the changes in her thyroid levels.
I do hope it keeps getting better.
in reply to: 46 Male, Runner and cyclist, with Graves #1170820First of all, trying to exercise while hyper is both very hard on the body and risky. It’s risky because your heart is over-taxed just by being hyper. And it’s also risky because we lose actual muscle, and we tend to have more injuries (shin splints, pulls, etc.) It pays to really slow things down until you have controlled, normal levels of thyroid again.
The tapazole is a chemical block to the production of thyroid hormone. ALL it does is interfere with your thyroid’s ability to take in iodine and turn it into thyroid hormone. So it has no effect that I know of on your overall athletic ability, other than the effect of potentially returning you to health. You have to be on the proper dose of it, which can take some time to find — and that dose requirement can fluctuate, so there may be dose changes needed from time to time. Antibody levels wax and wane for no well-understood reason, and when levels lower, we need less of the ATDs.
You mentioned that you were “recently” diagnosed. One thing you may not know is that the thyroid not only makes thyroid hormone, but it also stores it for future use. When we start the ATDs (like tapazole) they start immediately to block the production of NEW thyroid hormone. They have no impact on any stored supplies of hormone. So it can take a few weeks before we feel noticeably different.
In addition, depending upon how long we were hyper, it can take some time AT normal levels of hormone for our bodies to heal — for muscle to return, for stamina to come back — so you may not feel “normal” even though your doctor is reporting “normal” levels of hormone again. You need to be particularly careful with exercise during this time, because you will feel OK, but your body will not be a full strength, and if you try to go back to your previous levels of exercise too quickly, injuries happen.
Wishing you a quick return to health,
in reply to: 19 y/o daughter hypo six months after RAI #1170800In the most recent studies (2011), it has been shown that approximately two-thirds of the American population is overweight, and well over one-third (36+%) are obese. Unless data for Graves patients is statistically higher than that — which does not seem to be the case — it is very hard to argue (with our doctors) that our weight issues are Graves-related.
I don’t think it matters. It is frustrating to weigh more than you want to weigh. That has been the case for me almost all my life — except for four years or so immediately after my Graves treatments, when I was arguably too skinny. I can blame American portions, American fast food, the fact that sugar is in almost every processed food, or Graves…..I got lots of places to hang the blame, if that is what I want to do. I don’t think it matters unless whatever reason we latch onto gives us some realistic chance of changing things. If only a little.
in reply to: 19 y/o daughter hypo six months after RAI #1170798If I were in your shoes, I would remind my daughter of the dreaded Freshman Fifteen. That is the term we all used (and that I still hear from time to time, eons later) for the weight gain freshman year in college. I gained weight; my son gained weight; lots of kids gain weight freshman year. Kids leave home, and mom’s cooking to eat who knows what, in who knows what quantity. And start drinking beer. Etc. Some of the weight gain she has experienced is due to returning muscle after successful treatment of hyperthyroidism (We lose muscle while hyperthyroid, and it comes back slowly once we are at controlled normal levels of hormone). Some of her weight gain is undoubtedly due to eating habits and exercise levels.
Second: we often make the mistake of assuming that because we have had a successful treatment for our hyperthyroid condition, whether it be surgery, or RAI or ATDs, that we should feel well again right away. We don’t. Think in terms of hurricanes. Having too much thyroid hormone is like a metabolic hurricane. Just because the winds of the storm go away, it does not mean that everything is instantly back to normal. It takes time to rebuild. Your daughter’s body needs time to heal AT normal levels of hormone for (what seems to all of us) a long period of time. It takes months AT normal levels before we begin to feel normal again. My GP suggested an average of nine months, which was a number that horrified me at the time, but looks about right in retrospect.
Third: If it were my daughter, I would caution her against any and every diet that seeks to rule out whole categories of healthy foods. Those diets may help folks lose weight, but they gain it right back as soon as they quit them. They are not sustainable diets. It might help her to start keeping a log of what she eats and drinks. It has been shown in studies that writing down what we eat, helps folks to lose weight. (I know that when I write it down, I remember the morning doughnut when I’m looking at the evening dessert.) Then, after two or three weeks or so, she could consult a nutritionist. I think most of us underestimate the number of empty calories we ingest during the course of any given day, unless we are confronted with the number in black and white. I began a Weight Watchers approach last year, eliminating only added sugar (including the artificial stuff) and cookies and cakes, and over the course of the past almost year, I’ve lost 14 pounds. I had no idea that the sugar in my two cups of morning coffee, and the sugar on my cereal, and the two or three cookies (I thought) that I ate in the afternoon, could count up to 14 pounds. But they did. Anyway, when your daughter is recovering from the ravages of being hyperthyroid, she needs good nutrition of all sorts. Now is not the time to deprive her body of healthy nutritional building blocks.
Lastly — perhaps, unless I think of something else — make sure that your daughter understands how to take the replacement hormone properly. It is important that she be totally consistent in how she takes the replacement, in order to avoid hormonal rollercoasting. She should take it as soon as she wakes up in the morning, with a glass of water. She should wait a minimum of 30 minutes before eating anything. She should not take vitamins or other supplements for FOUR HOURS after taking the thyroid replacement. This may not be easy for a college freshman who wakes up two minutes before the 8am lecture, but she will be much better off if she establishes a routine that assures the proper level of absorption of her hormone pill.
It takes time to heal. But we do get well again. And weight issues, given the proper diet and the proper levels of exercise, do return to “normal” — whatever normal might be for that person. Many of us struggle with weight and it is frustrating — but that is true of the general population, not just those of us who have been treated for hyperthyroidism.
Hugs to both of you.
in reply to: Possible GD, having anger/suicidal thoughts #1170783I think it is really good that you have gone to an endo, and that the doctor is looking into things for you. Some folks do carry the antibodies for both hypO and hypER thyroidism, and can fluctuate, over time, between the two conditions. Regardless of what is going on, having wonky thyroid levels really is bad on our bodies, and we get very ill. As Kimberly indicated, this includes mental abilities, and emotions as well as physical issues. The thing to keep firmly in mind throughout this whole messy episode is that with appropriate diagnosis, the doctors CAN get you well again. That’s the thought for you to latch on to. This is not forever. You will get well. It may take time. But, please, hang in there.
in reply to: Newbie with Graves – #1170771Perhaps a bit of explanation:
T3 and T4 are actual thyroid hormones. The number refers to the number of iodine atoms contained in the molecule. T4 must be broken down, in the body, into T3 to be used in the cells.
The word “free” indicated in your test results, means that the test was looking for molecules available for cell metabolism. Some of our thyroid molecules get bound to the molecules of other substances — proteins, estrogen, iron, etc. — and are NOT available for cell metabolism.
TSH is Thyroid Stimulating Hormone, which comes from the pituitary gland. The endocrine system in the human body has a series of checks and balances. The output of the thyroid is monitored by the pituitary gland. If the pituitary thinks there is not enough thyroid hormone, it raises its production of TSH to stimulate thyroid cells to make more hormone. Conversely, if it senses too much thyroid hormone, it reduces the amount of TSH produced. It acts a bit like a thermostat. So, as Kimberly pointed out, if the actual levels of thyroid hormone are too high, the levels of TSH should be low. And vice versa. Once we’ve been under treatment for a while, the TSH is typically the only number our endos look at. The test for it is very finely tuned, and minute particles of TSH can be detected.
Sometimes we can be hyperthyroid, but only parts of the thyroid gland are active in hormone production. But when we have Graves, ALL thyroid cells are involved in the production of hormone. So the test results which said “uniform distribution of increased activity” means that all of your thyroid cells showed uptake on the test, which is an indicator for Graves. Sometimes the test results say “diffuse” in the description — but that means essentially the same thing.
I hope this helps.
in reply to: Newbie Help needed please #1170763The TSH stands for thyroid stimulating hormone — and it is the hormone that comes from the pituitary in an attempt to regulate thyroid activity. When the pituitary senses too little thyroid hormone, it raises it’s production of TSH. When it senses too much thyroid hormone, it lowers it’s production of TSH. So think of TSH and thyroid hormone as being on opposite sides of a teeter totter (seesaw). TSH is also a type of “running average” inasmuch as it doesn’t fluctuate quite as quickly as our actual thyroid levels. So, given that you have blood tests that show that your TSH is below normal, it’s an indicator that your endo picked up on — the subclinical terminology. An article I read a few years ago in a thyroid association bulletin, written by a doctor, said that doctors were beginning to think that even subclinical levels of hyperthyroidism need to be treated to avoid muscle wasting and bone loss associated with having too much thyroid hormone.
in reply to: Recently diagnosed with GD #1170762Well, my eye disease was never as bad as yours has been, Shirley. Bad enough, but not OD level bad. Anyway, they did the ultrasound on my eyes. It did show the muscles, which had detectable…what?…swelling, I guess would be the word. I don’t know about the orbital fat issues.
in reply to: Recently diagnosed with GD #1170760There is also an ultrasound test that can show the condition of the eye muscles, without incurring additional radiation exposure. Whether it is as good as a CT scan or MRI, I don’t know.
Weighing in: there can be good medical reasons why one patient might need to choose one form of treatment over another. The doctor will provide those reasons, if they exist, and, personally, I think the patient then needs to pay serious attention. For instance, if you are seriously allergic to the antithyroid meds, they are not your wisest choice of treatment. Some folks have underlying heart issues or liver issues, which can limit their choice of treatment option. Otherwise, all things being equal, we usually have a choice. I think that it makes sense to make a list of OBjective pros and cons. Cost. Side effect possibilities. Etc. Then, and only then, take into consideration emotional responses. Our emotional responses are typically out-of-whack while we’re hyper, which is why I think we need to be careful here. The emotional side of things does count, but it’s an unreliable guide.
To take your questions out of order:
There are fat pads, top and bottom, at the front of the eye. As the eye muscles swell, the fat pads are pushed forward. OD usually alleviates at least some of that issue. But it varies from patient to patient. Also, depending upon your age, your skin may not “bounce back” to the original condition, and sags will remain. That is my case — I didn’t have to have surgery, but after my eye disease remitted, those fat pad pouches were left saggy and baggy.
You have a thyroid, therefore, you need to ingest foods containing iodine. (The only way for the thyroid to produce thyroid hormone, is to have iodine.) So the folks telling you to avoid all such products are wrong. When I asked my endo about this issue, she told me that the only “foods” to avoid were things like kelp supplements — i.e. something containing HUGE amounts of iodine. (I also stayed away from kelp.) Throwing lots of iodine on the hyperthyroid fire can cause UNpredictable results. So, it’s best to limit extreme iodine consumption. People will also tell you to avoid certain veggies that have a chemical in them that is known to produce goiter if ingested in large enough quantities. But these veggies are good for us. And you would need to ingest physically impossible amounts in order to affect your thyroid function. So don’t worry about them, either.
When you are going in for something like an uptake and scan, or RAI treatment, you will be told to severely limit your consumption of foods containing iodine (like shellfish and seafood). But that is only so that your thyroid cells will be temporarily depleted of iodine, so they will hungrily soak up the treatment RAI or test RAI. It is a temporary necessity, not a long-term one.
Hyperthyroidism — uncontrolled — is a contraindication for any type of surgery. Other than that, I don’t know that it matters by what means you have controlled your hyperthyroid condition. You would need to ask your doctor directly.
In general, treating your thyroid problems has little or no impact on your eye disease. One study has shown that there may be a temporary worsening of the eye disease in about 16% of the patients who undergo RAI. That study also showed that a concurrent treatment with prednisone, eliminated the temporary worsening. So prescribing a course of prednisone in someone who already has existing TED is common. There have been subsequent –as yet not definitive — studies as well trying to establish other links. What we don’t know about this issue is still huge. But, in general, you can expect the course of your eye disease to be separate from your thyroid issues and treatments. Keep in mind, some folks get the eye disease long before their thyroids go wonky. Some folks, like Shirley (who posts to this board) got the eye disease long, long after their treatment. Some folks get the eye disease who have only ever been hyPOthyroid. They are separate diseases, linked only by their connection to thyroid abnormality.
Our health insurance companies typically will not pay for any surgery deemed “cosmetic.” That includes OD — in some cases — depending upon the insurance company. It’s wise to check things out with yours.
in reply to: Newly Developed Lactose Intolerance #1170707I think that part of the problem of deciding what is related, and what isn’t, has to do with the fact that hyperthyroidism puts immense strains on many body systems. Some of us may have some weak links in those chains, and strains from being hyperthyroid can cause them to break. Others of us do not have the same weak links. In my case, my gall bladder went wonky after successful treatment. My surgeon explained that gall bladder disease often presents itself after “rapid weight loss” which is most definitely what happened in my case. Whether that’s representative or not, I don’t know. If we turn up with a condition, after treatment, it is likely that we will blame the treatment, rather than the hyperthyroid condition which caused the strains in the first place.
It is not usual to fluctuate so rapidly from hyper to hypo type issues. I would recommend that you either nag your current endo, or get a second opinion. Or both. Some of us do have the antibodies for both hypo and hyper autoimmune diseases. And we move in and out. We are not, however, victims. There ARE things we can do to eliminate the fluctuations. But the doctor has to be willing to check for the condition
-
AuthorPosts
