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in reply to: Confused !! Need answers #1067391
If it were me, I would call the doctor and get an appointment for more blood work. The only way to tell if thyroid issues are making you feel this crumby is to get the blood test done. If it "isn’t thyroid" you could then ask your doctor to try to figure out what IS going on. But there are a few, unlucky souls who have the antibodies for both Graves AND Hashimotos thyroiditis (which causes hypo). They can cycle between hyperthyroid levels and hypo ones.
Wishing you better days soon.
in reply to: Help! Losing my hair!!! #1067403Hair loss can occur for a variety of reasons while we are fluctuating between different levels of thyroid hormone. It can seem like a lot of hair is falling out. But unless you have some other autoimmune problem that causes hair loss, you will not go bald.
The hair receives nutrients from the body LAST. It is considered "extra" not "essential". So it is one of the first things to show ill health, and one of the last things to recover. The best thing to do during this time is to take very good care of your hair. Your don’t need to buy expensive hair treatments or shampoos — just gentle ones. You don’t want to "tease" or "back comb" hair during this time. I had been getting perms up until the time I got Graves, and my hairdresser told me to stop with that. So I did. Harsh chemicals at this point in time could damage your hair even more.
in reply to: Total T3, T4 normal, no TSH… #1067414Something that I read — in a publication of one of the thyroid associations — might put a bit of perspective on things. The doctor writing stated that the consequences of even minor levels of hyperthyroid are — in the long term — severe. (Osteoporosis, heart complications, etc.) On the other hand, the medical community doesn’t see minor levels of hypo as being AS bad for the long term. So, they want to agressively treat hyper levels — even the "subclinical" range (when the patient is not necessarily exhibiting symptoms, but bloodwork shows a problem).
Second. The actual thyroid levels at any given point in time is simply that: the levels at the time the test was given. TSH, on the other hand, is a type of "moving average," so it’s results show a longer trend. It’s another reason why our doctors really look at that TSH. It does take it longer to "catch up" to the predominant, current levels of hormone, but it gives a broader picture.
I do hope everything evens out for you soon.
The short answer: I don’t have a clue. Just something to think about, though: is it just your family? Or do your neighbors and friends living in the same area have a much, much higher rate of Graves? If it’s just your family, it is entirely possible that it is the familial genetic thing, even though your family is probably throwing off the "average" charts a bit. IF there is a whopping amount of Graves in the neighborhood at large, then you might be on to something. But family tendencies can be strong. My mom had Graves. And, when I began researching thyroid disease, I found out that my kids have at least a double whammy effect due to thyroid disease being on BOTH sides of the family. My husband’s family has it, too, along with other conditions (premature gray hair, etc.) that are often a harbinger of thyroid problems to come.
Sometimes, coincidences happen — take the first President Bush and his wife, Barbara. Both turned up with Graves. And their dog also got an autoimmune disease. Ultimately, it was decided that it was just a nasty coincidence.
in reply to: Effects of RAI #1067719How much RAI anyone gets is really variable. Someone with a slightly lower uptake, but a large gland, will get a different dose than someone with a high uptake and a small thyroid. So we cannot compare, really. What matters is that you were given enough for the RAI to affect YOUR thyroid. If you got slightly too big a dose? If the RAI is not taken up by your thyroid, it is eliminated from you body in a very few days. To help that along, drink a lot of water, and suck on some hard candies.
I do hope you are feeling much better soon.
in reply to: HELP please with latest results…. #1067423I’m really sorry you are having such a rough time of things. Having had Graves for 20 years does, most likely, add to the the length of time it will take for your body to fully recover, though. Just getting to normal levels of thyroid consistently does not, unfortunately, magically make us feel great all at once. Our bodies need time to heal, and the longer we were battered by aberrant thyroid levels, the longer it can take for things to come right.
In addition, there are always going to be variations, typically, in actual TSH readings over the years. I don’t know why that is — just that it is. Perhaps it has to do with activity levels, or diet or medications or vitamims, supplements…. (are you eating something that interferes with the replacement, or have you had a medication removed/added that interferes with the meds, even slightly) etc. etc. etc. TSH does not, ever, in my experience hit one single number in the range, all the time. I sometimes get close to the same number consistently, but there is "some" variability. There was more early on in my treatment than there is now, but even yet, there can be occasional bumps.
How we feel is not necessarily reflected in the TSH. Think about it: before you got Graves, there were periods of time when you were constipated, nervous, sleepless, etc. These symptoms were not necessarily caused by Graves, or thyroid levels. Once we get Graves, we tend to blame thyroid levels for everything. There was a period of time when I was getting rather frequent blood tests, because I was so sure how I felt was related to thyroid. But what I discovered was that I absolutely could not tell, with any consistency, where my levels were. There were times when I felt wonderful (truly) and had a routine blood test that showed I was hypo (12 TSH). I could usually pick up on hyper thyroid levels much better — but not always. I have related here on the board the fact that I have gone in for tests thinking I was hyper/hypo/fine and had the test show a TSH of 2.0. We cannot always tell. And we cannot necessarily fix how we feel by changing our replacement dose.
When I’ve gone to my doctor feeling punk, the first thing I check is my thyroid levels. It is so supremely easy to fix if the thyroid levels are off. So, I check those first. BUt if I hear from my doctor "It’s not your thyroid," I then immediately ask, "OK. Then what IS it?? What do we have to check next." Sometimes, I need additional tests. Sometimes I need to make changes in my life style — add exercise, or change the diet, etc. One time, I needed surgery for a completely unrelated condition. And once that was done I was amazed at how much better I felt, over all.
What helped me was to watch for "improvement" over time. I tried to focus on even the smallest of steps towards "better," rather than looking for "normal." By putting my focus on positive changes, it helped me to be a bit more patient with the whole, slow process. If you can try making a list of improvements, perhaps that will help you as well. I hope so.
in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067540One common mistake we make as patients, when we are diagnosed with an autoimmune disease, is to think that our immune systems are "compromised." This is misleading, if not downright incorrect. Our immune systems have made a mistake and created an antibody to our thyroid cells; but the immune system IS indeed working to protect us from disease, etc. If our immune systems were not working quite so well, we would not have the problem with the antibody attacking our thyroids.
There can be stages in our treatment when our immune systems are not working well for us. If we are being made ill by hyperthyroidism, then we can indeed get any opportunistic virus or bacteria that crosses our path. That is because we are being debilitated by too much thyroid hormone. Also, if we are taking ATDs, our immune system may be somewhat suppressed by the drug. Those of us on replacement hormone, or in remission, with our thyroid levels in the proper levels, should have no more problem with becoming ill than our next- door neighbor (one without autoimmune problems).
in reply to: Neonatal + Graves Disease Question #1067468One of our former moderators, Debbie Jass, is an education specialist. She did research and wrote up a pamphlet about Graves in children. It is available from NGDF — I’m not sure with the current board set up, how to tell you where to find it specifically, but if you contact the Graves’ Foundation they can provide the pamphlet to you.
in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067537In running searches for information about adjuvanted vaccines, I encountered a press release from a Canadian source that ran yesterday (October 31). You might want to use your search engine to pull that press release up and read what it has to say.
I think you should discuss your concerns with your endocrinologist, and/or your primary care doctor so that you have all the facts. One of the reasons pregnant women are advised to get the H1N1 vaccine is that the complications that arise if they come down with the disease can be dire. Pregnant women are having a much harder time with the flu than their peers, apparently. Statistically, your chance of problems may be much larger if you do not get the vaccine than if you do. Your doctor can help you weigh this information.
Good luck,
in reply to: Scared high TSH #1067569I don’t know how the UK scale runs, compared with that in the US, so I cannot really judge how hypo you are. The key factors for you, however, are that you are one replacement pills, and you are getting blood work done regularly. With those two aspects of things covered, you should be less worried. If the scales are the same, a tsh of 32 isn’t necessarily dangerous to you (other than feeling sluggish, etc. etc.) . I know we frequently compare things to what thyroid cancer patients go through, and the song might be getting old, but those folks, who have their thyroids surgically removed AND removed via RAI (to get every last thyroid cell gone from the body), used to have to go off their replacement hormone for WEEKS in order to get a test to make sure that they still didn’t have any thyroid cells. They went way more hypo during that time than any of us do. Fortunately for them, medical progress has improved that situation for them, but when I found out about it long ago, it helped to make me a bit calmer about my own (way more slightly) elevated TSH.
One thing to be very careful of, however, with your replacement dose. It is best to take it every morning prior to eating anything, with a decent-sized glass of water. Wait 45-60 minutes before eating. And put about four hours between the replacement dose and the taking of ANY vitamin, mineral, calcium, etc., supplements. We can interfere with the absorption of our replacement dose by eating things high in iron (say, oatmeal, fortified breads or cereals, etc.) or taking vitamin supplements. Once the replacement dose has been absorbed into the blood, we can eat whatever we want, and vitamin supplements will not interfere with how the hormone works. But if we ingest iron and other minerals too soon,we can get limited absorption of the hormone.
in reply to: Which antithyroid agent? #1067585There are medical reasons why a doctor might choose one antithyroid medication over the other. That is primarily why you should discuss your options with your doctor.
Bobbi
in reply to: Post RAI and want to cry #1067602Don’t panic. About one week after RAI (give or take) dying thyroid cells dump their stored supplies of hormone into the body. They are not making new hormone; this is a temporary increase in hyperness. I know it is unpleasant, but it only lasts a few days, typically, and it means that the treatment is working to eliminate thyroid hormone-producing cells.
I do hope you see improvement soon.
Bobbi
in reply to: Effects of RAI #1067700From my point of view, the issue comes down to whether or not the medication is working for you to keep your thyroid levels under control. You need to be most afraid of being hyperthyroid. Many people have done well on antithyroid meds, others have had problems. And, as we age, we experience more side effects to drugs — even drugs that we could tolerate as a younger person. I think this may be one reason why our doctors try to move us on from the drugs to either RAI or surgery, all things being equal.
I had RAI, and it made me well again. I was told to keep some distance from other people ( measured in feet, not walls) for a week in order to keep from accidentally exposing them to some radiation. There are other precautions as well, designed to do the same thing. (It’s kind of like in the dental office, where the lab tech walks out of the area, or goes behind a lead shield, before turning on the xray machine. It isn’t that the amount of radiation that is generated is bad for her/him, but that it is an unnecessary exposure. ) In my case, the ATD was making me sicker, so doing something else was prudent. And replacement hormone is chemically identical to our body’s own thyroxine, so our bodies process it without the types of side effects that can occur with non-natural chemicals entering the body. It was a good solution for me.
It’s never easy deciding which treatment option to choose, so I do wish you luck with it. And good health.
I will try to give you an answer, but I’m perhaps not the best source: I’ve always felt pretty good when diagnosed as hypo. Basically, the body slows down. The symptoms are often the reverse of what we experienced while hyperthyroid. The pulse rate will drop (less than 70 bmp). We feel cold more easily (as opposed to hyper when we typically always felt too warm) . We can get constipated (whereas with hyper our bowels moved more regularly than normal) . Fatigue is also a symptom. Fatigue is a symptom for both hyper and hypo. My experience with it, though, was that when I was hypo, I could get out and exercise (wisely) and would feel less tired. When I was hyper, exercise made me MORE tired. Hair will tend to fall out more. We don’t go bald but there were times when I thought it had to be imminent: I was dropping hair as badly as my collies do.
As I said, I felt pretty good when I was diagnosed as hypo. Sometimes, after having been hyper for so long, however, even normal levels of thyroid hormone may make us suspect that we are hypo. The key to really feeling normal for me was to make sure I got my levels checked if I thought things were off, and if they were not, to get out and exercise a little (I am not an exercise nut, but I do take walks, if only around a mall). Getting a bit of exercise typically energizes me.
in reply to: H1N1 vaccine and graves #1067670First off: There is a distinction to be made concerning where in the scheme of things you are in your Graves treatment. "Having Graves" would not necessarily preclude being able to take the nasal form (aka ‘live’ virus) of the H1N1 virus safely. People who have been successfully treated with surgery or RAI, and returned to health, may, in fact, be told by their doctors that the nasal form of the vaccine is OK.
Being on ATDs, however, has the capability of lowering white cell count. A patient with Graves being treated with ATDs might be advised NOT to take the nasal (live) form.
And "live" isn’t quite the right term. Someone else may be able to explain this better than I, but as I understand it, the virus in this vaccine has been weakened and changed so that while it can enter, and live briefly, in nasal passages in order to trigger antibody production, it cannot live and multiply deeper inside the body, in the lungs for example, and cause severe illness.
The main thing to do is discuss the pros and cons with your own doctors.
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