LadyConstanze
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quote:
ORIGINAL: LafayetteLady
I did discuss partial versus total removal with endo. He indicated that would be something the surgeon decides when he had me on the table. Variables mostly regarding the nodule and how the biopsy turned out. However, it seems here, total removal is more likely. Probably because of the erracticness (is that even a word?).
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My biggest concern with the thyroid removal is the time it takes to find the right medication dosage. My understanding is that it takes around a year, and as you know, wonky thyroid levels make you miserable. That's why I've decided not to remove at this time. I'm sure the endo won't like my decision much, but its my throat that would be sliced, so tough cookies on him. Of course, this is all contingent on the biopsy being beninign. I let you know next. Week. I respect your opinion in general, and since you've gone through this, even more so. Ill be quite grateful to have you as a sound board.
To be honest, I'm in 2 minds regarding the partial removal, natural thyroid is of course better than artificial, but the thing is if you have a partial removal, the nodules can grow back if the medication isn't adjusted the right way and they really don't want to do surgery a 2nd time (having that issue).
Essentially it is your body, but it might consider a complete removal, because it seems to be a lot easier to adjust the medication if you're going from zero. A friend of mine had the complete removal, they tried all sorts of stuff before, it contributed to his congestive heart failure and subsequent heart transplant (mind you there were issues before, it just contributed to them), they have him now just on a form of synthyroid and he's doing super well. Also there are different types of synthyroid around, I can't tolerate some brands because something in the fillers also blocks the reception, it's quite important to get the right brand with the right fillers if that affects you, and then stick with the brand you're used to, because even switching between brands (despite them all having the same active ingredient but different fillers) can cause some problems with the absorption and how your body converts T4 into T3.
Honestly, I wouldn't rule out the total thyrectomy, there is a good chance that it might make things easier for you. I'm not bitching that they only did a partial on me, there was a good chance that it might have worked and I was in my late teens when it happened, at that point in time that was the latest in medical studies, but modern medicine has a way of moving forward pretty fast. If they could remove mine completely, I think I'd go for that, but again, they really really don't like opening up again due to the scar tissue and the location, the 1st surgery is fairly uncomplicated and straight forward, but the 2nd time round, not so much. I was told there's a fair chance that some of my vocal chords would be damaged, so that option is out.
Since the thyroid is pretty essential for metabolism, it might actually also have something to do with you being diabetic, or influence that condition, it might also aggravate the pain you are having from the arthritis in your neck and possibly cause some allergies. If you can, could you try to see somebody who specializes in thyroid, not just an endo but an endo who only zooms in on thyroid conditions, they're pretty rare (I found one at Cedars Sinai in LA) but they really are switched on and know most of the symptoms where another doctor might treat them as unrelated.
The really odd thing is, my partial thyroid picks up in warm climates, dark and wet it tends to go on strike and causes a lot of other problems, whenever I'm in LA for a few weeks, I'm so much more active, have to reduce the medication gradually, I eat a lot more than I do usually but oddly enough always lose 10 to 15 lbs.
Somebody mentioned hair loss on thyroid meds, can happen, though it's usually a sign of the particular medication not being compatible with the body, my mom had it and they switched her to another brand, where she simply metabolized it better and they could even reduce the dosage. Same with weight, depending on the person, some people who have thyroid problems will just put on massive amounts of weight. I remember arguing with one GP in the UK who told me flat out that he doesn't think I need to have my thyroid checked as I'm not overweight, however even if I am falling within their skinny parameters, I know my body and if despite monitoring my intake and how much I burn with workouts and dog walks, I start to gain 10 lbs and can't shift them, I just know something isn't quite right.
There is a site called the Vitamin D Council or something like that, I found some pretty good info there regarding vit D and thyroid and printed it out and brought it to my endo (helps that the founder of the site is a pretty highly respected MD), who then actually looked into the issues. I first found it quite annoying that I have to bring him stuff, but essentially it's my health, so it makes sense that I take an active part in it, especially since it influences my life a lot. If my meds are well adjusted, I'm feeling much better, more energetic and I'm not phazed by much, if they're not, my allergies tend to break out, I feel down and everything seems to be much more difficult.
Oh an interesting fact, don't know if anybody who's having thyroid issues is also on anti-depressants, a lot of depression is caused by a malfunctioning thyroid and most anti-depressants also block the thyroid. I'm not telling anybody to stop using anti-depressants, but I think it's prudent that they ask their doctors to do an extensive thyroid test before they put somebody on them.
dollparts mentioned that they don't give her the higher dose of vit D, well, again, I would rely on blood tests, but they initially put me on a loading regime where I got shots and then very high doses, the MD told me that the prescription vit D is just a higher dose of the over the counter vit D but much more expensive (due to being a prescription drug - can't quite make out the sense of that) and that in the later stages of the loading system, it's cheaper to take 2 of the 5000 unit pills than buy the 10000 prescription ones. The gel capsules are fairly small, so I had no issue with that at all. But again, I wouldn't want to mess around with dosage if the MD has seen my blood tests and go against medical advise.
There's nothing wrong with asking questions, getting 2nd and 3rd opinions, it's your health you got to take an active part in it, but self-medication when MDs tell you not to, seems a bit irresponsible to me.
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