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in reply to: Recovery time? #1065426
I don’t know about thyroidectomy, because I did RAI. But I had a different type of surgical procedure a year ago, with minimally invasive technique used, and I was amazed at how weakened I was afterwards. No pain, no stitches to heal, and it took me six weeks before I had more energy than limp pasta. Apparently, general anesthesia is at least part of the problem. So allow yourself PLENTY of time.
One thing to keep in mind — if you were on prednisone, or other steroids at the time blood tests were given, that would impact the antibody levels…… You may have taken that into consideration already, but I thought I’d mention it in case you hadn’t factored that aspect into you thoughts. For example, if you had a certain antibody level ON steroids, and your levels now, OFF steroids (hypothetically) were a touch higher, then in point of fact your antibodies would have subsided between then and now. Just a thought.
I have heard conflicting information, Shirley, about whether testing for the antibodies makes a whit of difference in predicting the course of the disease. Some patients will swear by it. As an amateur here, it stands to (my) reason that if the antibody levels are high, then the disease must be active. But a conversation with my endo long ago suggested otherwise. So the lack of documented knowledge about any correlation may be why your questions to your eye doctors have come back with vague shoulder shrugs.
One of the reasons why RAI is often recommended over surgery is precisely because it involves fewer side effect risks than the surgery does. There are other "cons" in the RAI column, but some of the "pros" are that there is no endangerment to the parathyroids, nor to the vocal chords, nor is there risk of infection the way there is with surgery.
That said, my sister-in-law had a parathyroid that was running amok, and she had to have it removed. The problem was that the doctors could not determine which parathyroid to remove until they had removed it, and tested it, during surgery. She had at least one, and possibly two healthy parathyroids removed before the doctors found the bad one. She told me that it wasn’t a problem, as long as there was still at least one functioning parathyroid. I do not know if this information is absolutely true, and it is indeed something you should check out with your surgeon and other doctors. But if it is true, it would eliminate at least some of the worry the recent medical studen implanted in your head.
Hi —
I just wanted to give a word of encouragement. While being hyperthyroid makes us horridly ill, if we get it treated effectively (and there are two main ways –"antithyroid" drugs or removal of the thyroid) we do have a wonderful chance of getting well again. It might help you to figure out what is best for you by setting down a list of pros and cons, using as objective a set of information as you can. Add to this any comments your doctor has made for you for or against the treatment options. While I agree totally that this is your decision, there can be sound medical reasons why one person should do, or not do, one of the treatment options. Our doctors typically weigh in with these. For instance, if someone has a wonky heart to begin with surgery, or RAI, might be more dangerous for them than for the average person. Or,if someone’s liver is compromised, the antithyroid drugs might not be a sound medical choice. These things happen rarely, but we really should pay attention if our doctor warns us against something.
Having things written down helped me to figure out what I wanted to do. It might help you, as well.
As for weight — one of the more dangerous aspects of being hyperthyroid is that we lose muscle, especially the larger muscles in the legs, arms, and chest. Muscle weighs more than other tissues in the body, so losing muscle can appear to be weight loss. But the presence of muscle helps to raise our metabolism because muscles burn more calories, even at rest, than other tissues do. When we get back to normal levels of thyroid, the muscle mass lost starts to come back. It is "mushy" muscle (according to one of the doctor’s at a conference) and needs to be exercised to strengthen it and regain stamina. That returning muscle looks like weight gain, but it is GOOD weight to gain because it helps to raise our metabolism. My point: don’t look at the scale as the absolute guide. I regained 15 pounds after my RAI, without changing into a higher clothing size — I was regaining muscle, not flab. Regardless, the aim is to get healthy again, and regain our normal life style — at which point weight issues should normalize over time.
I do wish you good luck with your decision, and with whatever treatment you choose.
I recently had my endo bump down my replacement hormone — after she raised it — because I wasn’t sleeping. Everything else was fine, but I could not sleep. Fortunately for me, my endo was willing to "tweak" the dose to see if that solved the problem. A minor dose adjustment was made, even though I was in the "normal" zone, and I could sleep again without any over-the counter or prescription help. So I think it is enormously helpful to have a good relationship with the endo, and have an endo who understands that sometimes just being in the normal range isn’t quite enough.
The problem we run into is that our hyperthyroid symptoms can be caused by multiple different things, not just too much/too little thyroid hormone. So the idea of keeping a symptom log is good, particularly if you can tie things into OBJECTIVE symptoms as opposed to subjective symptoms. Simply saying "feel tired" is not the same as "get out of breath walking to my car." "Resting pulse rate of 95" is objective, where "rapid pulse" isn’t. Doctors have a whole lot of science background, so providing objective information usually is more compelling to them.
As for the sleeping issues. The Ambien might have stopped working because we develop resistance to it over time. When I was taking it, I could not take it for more than two or three nights in a row before the dose stopped working. So, I developed a strategy of taking it only once or twice a week. In between I would go sleepless OR take an over-the-counter dose of a type of antihistamine that makes me drowsy. I also found that drinking warm milk helps, as does drinking chamomile tea. As I said, now that my replacement hormone dose has been corrected I’m not having the sleep problems. But I had them for quite a while.
I do hope you are feeling well again, soon.
in reply to: update from 7 weeks post rad iodine #1065529Congradulations on graduation!! You’ve accomplished a lot having been so ill.
As for the chronic "illness" business. We all deal with that idea in different ways. Mine is this: I play with "semantics." How can I be "ill" when I feel so good? So I think of it more as a chronic "condition" which requires a daily "pep talk."
Wishing you good days.in reply to: Kidney Stone… update 5/27 #1065537Good luck. I hope you are feeling much b etter soon.
in reply to: Kidney Stone… update 5/27 #1065534I’ve not had kidney stones, but my husband has. The problem is that you NEED your kidneys to be healthy, and stones can stress the kidney. My husband nearly lost one of his kidney’s due to stones. So you really shouldn’t put off taking care of it. I know you don’t want to add this to your "menu," but you really do need to take care of yourself. Oh, yes, and little to no pain is not necessarily a sign that all is well — or, even, not too bad.
in reply to: Having a hard time dealing with Graves. #1065672It’s really, really important, Lefty, that you go to a doctor to find out what dose of the medication to take. Not one person here online (anywhere online) is qualified to tell you how much of the medication you need. But with your lab reports in hand, even a GP could. Or should. When I was diagnosed, with labs like that, a GP gave me antithyroid meds and a dose to go along with it. You have to find the "just right" dose of the medication that is going to put you back into normal levels of thyroid hormone. Too little, and you’ll stay hyperthyroid; too much, and you’ll become hypothyroid. So the odds are if you try dosing yourself, that you’ll get it wrong and it won’t help. Even doctors sometimes overshoot the mark, which is why periodic blood tests are needed. "Normal," when you have Graves disease, can be a moving target.
I know you feel awful. That’s what being hyperthyroid does to us. I was (first) sent to a cardiologist by my GP because I was having heart flutters, along with a racing heart. I was put on a treadmill for a stress test. The cardiologist had to HOLD ME on the tread mill because my legs stopped working part way through the test. He said, "Well, your heart is just fine, but you are in horrible shape!" I had been power walking a couple of months before, with no problems. The thing is, I was left undiagnosed for too long, and my physical problems grew — like yours are doing. But once you get proper treatment, you will start healing and start feeling OK again. That is why it is so important for you to find a way to see a doctor.
Here’s a fervent prayer, too. I hope, someday, and soon, that people without health insurance have a way to see doctors and get help without being told they are "charity" cases. Whoever said that to you was a senseless clod.
Just a guess here. But the nerve that "works" the vocal cords goes through the thyroid. I’ve always suspected that problems in the thyroid could impact that nerve, because I, too, had some hoarseness before treatment. Regardless, persistent hoarseness should be checked out by an ear, nose and throat specialist to make sure something else isn’t going on.
In response to Sue’s question, I’m not sure how many eye surgeries Jake had. I’m pretty sure that it is more than a dozen. Just think LOTS.
Jake would probably be the person to best respond to your question, Shirley. And, he still may. But since your question has been sitting here for a while, I thought I would tell you what I learned, from Jake, long ago. He described his strabismus surgeries. There is apparently some initial point during the surgery during which the patient is not aware, but you must be aware and able to direct the surgeon as he/she adjusts the eye muscles to eliminate the doubling. Whatever anesthesia is given to allow the surgeon to get into position around the muscles may be minimal — or local. I do not know. But since you have to be functioning during the surgery — mentally, physically able to direct the surgeon — whatever the anesthetic is it cannot be one that puts you into any type of deep sleep.
in reply to: review TSH, T3, Free thyroxine #1065557Part of the problem that we have, is that "symptoms" of a problem for us can also commonly be caused by something else. For example: people DO get constipated who are not hypothyroid. People do get horridly fatigued, etc. etc. Those of us who have had doctors tinkering with our thyroids, however, tend to think that these symptoms are an indication of some aspect of thyroid imbalance, because of our experience with the process. My first thought when I get irrationally irritable is "Is my thyroid off?"
The fact that our symptoms can be caused by many different things is one of the reasons why our endos look at the numbers (for TSH etc.) rather than listen to our symptom list.
As to why you’ve had reductions in replacement hormone without your thyroid levels changing much? A guess. Most of us think that if we have RAI or surgery to remove our thyroids that there is absolutely no thyroid tissue left. This is usually not correct. Even with thyroidectomies, typically "some" thyroid tissue is left in place to protect parathyroids and the nerve that services the vocal cords. That is why thyroid cancer patients who have aggressive surgery to remove thyroid tissue, go through RAI after the surgery. There is likely to be ‘some" thyroid tissue left. Even with ablation being the goal of RAI, some thyroid tissue can be left alive, and kicking. If there is thyroid tissue present, those cells are making hormone and putting it into the body. Antibody levels can rise or fall. And when they do, there can be a need for a dose change of replacement hormone.
Another guess: As we age, our bodies change. We lose muscle and bone on an ongoing basis. Some of us lose lots of weight as a result. Many of us get heavier. Perhaps this can cause the need for a change to our replacement hormone. If there’s less/more body to "run" our thyroid needs might change.
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