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in reply to: Newly Developed Lactose Intolerance #1170700
Check with your pharmacist about preparations of levothyroxin (the active ingredient in synthroid) that do not contain lactose. Long ago, when I was newly diagnosed, there WAS a brand of replacement hormone that was manufactured without lactose. So there may well be one available.
The process of diagnosing Graves has three elements, typically. The first is the blood test that shows you are hyperthyroid. Occasionally, and rarely, someone who is hyperthyroid has an infection, a virus, in the thyroid. If this is the case, however, there are signs of infection (inflammation, fever, etc.) Without those signs, then, the doctors will do an uptake and scan. These two tests are done together to rule out another cause of hyperthyroidism — autonomous nodes. The uptake portion measures how much of a known dose of iodine goes into the thyroid during a measured period of time. The scan portion of the test shows whether the iodine was taken into all the cells of the thyroid uniformly (Graves) or whether it was taken into only some parts of the thyroid (autonomous nodes). The treatment options are the same, but it does help with the diagnosis and prognosis. It is my understanding that someone can have Graves (have the whole thyroid involved in the hyperthyroidism) without their uptake being severely high. If the uptake is too low, however, they are not a candidate for RAI treatment of the disease and would need to rely on the ATDs or surgery to fix things.
Most endos are “numbers guys” (or gals). And most of the time, the number looked at is TSH. So, I don’t know that going to a different endo will necessarily make a difference. It is certainly something that could be tried. I think the important thing, from your standpoint, is whether or not you can talk with your endo (current or new) and “brainstorm.” Endos are internal medicine doctors with a specialty. So they are typically well-trained in the full body before their emphasis on the endocrine system. When we go in blaming our thyroid for some symptom or other, our doctors often stop their thought processes with “it’s not your thyroid.” They proved us wrong. Again. When that happens we need to prod more thoughtful consideration by asking, “Well, what might be causing it?”
Typically, that gets the doctor in problem-solving mode again.in reply to: Still exhausted! #1170714We, here, are patients, like you, so for medical insight, you need to be pumping your doctor.
Keep in mind, though, that just getting our levels back to normal will not instantly make us feel normal. The best analogy is to think of hyperthyroidism as a hurricane for the body. Thyroid hormone affects most, if not all of our body systems. Having it out of whack in effect damages those systems in one way or another. Now that you have your thyroid out, and you are on a dose of replacement that makes your thyroid levels “normal” your body needs to heal. Just like communities need to rebuild after a hurricane, your body needs to rebuild.
There are things you can do to help the healing process along. We need good nutrition. We also need to restrengthen muscle after being hyperthyroid. So, drag yourself outside for short walks, do stretching exercises on the floor, just plan to move a bit more than you’ve been doing. Until your muscles regain strength you will feel weak. But you need to think in terms of baby steps. An illustration: when I went to an exercise physiologist after I got back to normal levels of hormone, he analyzed my physical condition with the help of a computer program. At the end of the analysis, he told me that I had only 8% (!) of the muscle strength of a normal woman my age. And I felt every bit that weak.
But the point is that if you just wait to feel miraculously better, it can take longer than if you plot things out and work on improvements. Do check things out with your doctor. But if you are given the go ahead for exercise and “normal” living, set out a plan for yourself to regain strength and stamina. We do get well again. It just takes a bit of time.
in reply to: Newly Developed Lactose Intolerance #1170694Unfortunately, gatorgirly, some people absolutely believe (at least for a while) that if they do everything “right” (whatever their definition of “right” is), that they will not get sick, need surgeries, etc. They can be seriously annoying in their certitude. Anyway, there is typically nothing that any of us can do to avoid Graves. None of us did anything “wrong. ” We are not being punished for doing something wrong.
I’m sorry to hear about the lactose intolerance issues. I suppose it’s good that you now know what is going on, but it’s bad that it affects a food form that you love. I wonder if strictly limiting lactose for a while could allow your body to “detoxify” so that eventually small amounts of these favorite foods, combined with the anti-lactaid pills could be tolerated?
And, to answer your question: I’ve been writing to this board for a long, long time (I was treated in late 1996), and you are the only person I can recall developing a lactose intolerance after RAI. If there were any others that I missed, they were very few and far between. And I haven’t read of any substantive scientific studies on the issue. There’s a lot we still don’t know, but coincidences do happen.
This disease can make us terribly ill for a while, but it IS treatable. We do have the potential for getting well again.
If the ATDs are not lowering your white cell count, your immunity issues should be normal. It is a rare event that causes them to lower our WBC count. But “being” ill will most definitely lower our immunity whether we are on ATDs or not. Also, “having Graves” does not mean we have lower immunity, so long as the hyperthyroidism is under control.
in reply to: RAI treatment #1170019At one point, I was losing hair in clumps — like my collies! My dermatologist explained to me that the body considers hair to be “extraneous.” It is a perk, not a necessity. So when our bodies are under seige, the hair is denied nutrients which go to other, necessary parts. The abrupt swing from hyper to hypo was when my hair went wonky, so perhaps that is what is happening to you, too. One of the symptoms of hypo is hair loss. Once I got stabilized on hormone replacement my hair issues went back to normal. So perhaps that is what will happen with you as well.
in reply to: Empathetic employer #1170658That is so good to hear, Barb. And I do hope you see some improvements, soon, with your eyes. The hot phase is such an ordeal.
in reply to: Looking for some info and support please #1170342If those shins are itchy, you can often get some relief by moisturizing well. Get a thick, creamy moisturizer. Apply it to WET skin. And do this two times a day (a.m. and before bed). Also, before bed, you can apply the moisturizer and wrap your shin in plastic wrap to hold the moisurizer in. It does a wonderful job of softening and soothing. I put petroleum jelly on wet skin at one point (and then wrapped) to get extra moisturizing effect. But a good, creamy moisturizer can work also.
Hi, trlrunner:
I do hope the treatment works out to put you back on track (ooh, bad pun!) soon. I know how hard it is to have to give up doing something you love.
in reply to: Why do they call Graves patients “survivors”? #1170634At other times on this board, particularly, we’ve been called Graves Warriors. That is much, MUCH better than “patient,” “victim” or even “survivor.”
in reply to: New Dr. Tomorrow, What to ask? #1170581You have a legitimate history of verifiable disease. Hyperthyroidism, treated by RAI, is verifiably in your medical history. As are the kidney stones. Your new GP needs to know the details. Any doctor worth their degree will ask for your “history.” He/she will ask what medications you are taking, in what dose. Questions will be asked about what tests, etc. What you probably should not do, on a first “date,” is try to instruct the doctor on what tests to run, etc. Doctors tend to bristle when the patient tries to run the show. But you do need to keep the doctor aware of your concerns. A fine line. I tend to ask questions. For example: does it make sense to run a full thyroid panel again? Is there any test that might tell us what is causing the kidney stones that I haven’t had? Things like that. I get my concerns across without trying to make the doctor feel like he/she doesn’t know the job. By asking questions, too, I get a better flow of information from my doctor.
As far as antibody testing: to what point? You’ve had your thyroid removed. Your antithyroid antibodies (and you probably still have them) cannot make you hyperthyroid any longer. Antibody testing, at this point, has very limited value, and may have no value whatsoever. This was a question that I asked my doctor many years ago. At that point (post RAI) — and I don’t think much has changed — I was told that antibody testing would not provide any useful information.
And a forewarning: Armour contains T3. If you are having heart issues (constant rapid rate), your doctor may want to take you off of it, and put you on T4 replacement alone. It is a legitimate idea and may be worth trying if your doctor suggests it. I was on a dose of cytomel for a while (T3) in addition to my T4 replacement. When heart issues arose — as they can do, because T3 is a very powerful jolt when we take the medication (it goes to work instantly, even if we do not need it at that moment) — I was taken off the T3. I was sure that I would feel awful. I was wrong. I felt fine, and the heart issues resolved. So, please keep that in mind. There’s a reason T3 replacement isn’t “standard.” For some of us, it is not the wisest choice. Thyroid tests may show that your replacement levels are just fine, and the subject may not come up. But if it does, you need to understand why your doctor might be making the recommendation.
While I understand that some folks deal with weight issues after treatment, it is not a given. I lose weight when I increase exercise and decrease calorie intake. That happened to me right after RAI when I eliminated empty calories from my diet. And it happened to me again last year, when I did the same. I know of others who have had treatment for either hyperthyroidism or thyroid cancer, and some are heavier than they would like to be, and others of us are not. I don’t know that there is enough research out there to be able to attribute lingering weight problems to our thyroid issues.
So, to repeat Kimberly’s advice — it is important to forget the weight issues and get your hyperthyroidism treated. Deal with whatever weight issues might crop up once you are well again. Right now, concentrate on eating properly — good nutrition. And concentrate on eliminating your hyperthyroid state.
in reply to: Botox in lieu of muscle surgery #1170549I would recommend that you ask the opthamologist WHY botox instead of strabismus surgery. From what I understand, botox is temporary and needs to be repeated. Strabismus surgery tends to fix things, if they are reasonably stable.
in reply to: Botox in lieu of muscle surgery #1170548I would recommend that you ask the opthamologist WHY botox instead of strabismus surgery. From what I understand, botox is temporary and needs to be repeated. Strabismus surgery tends to fix things, if they are reasonably stable.
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