[Ski]

in reply to: Local specialist or Mayo Clinic for Thyroid Eye Surgery? #1069172

Look for a doctor who is associated with the American Society of Ophthalmic Plastic and Reconstructive Surgery (ASOPRS), they have special training for this particular procedure and all the related procedures.

[Ski]

in reply to: FYI all, I’m going on vacation! #1069385

Noel, I will definitely see you in Charlotte!

Hyperm, thanks for the invite, I’d LOVE to come up for a natter but we’ve made all kinds of other plans, so I’ll have to save it for next time… Wish I could, I’d love to come give you a REAL hug rather than a VIRTUAL hug!!!

Smile to the south, I’ll smile to the north! ” title=”Very Happy” /> It’s rainy today, but actually quite a respite from the hot weather we’ve been having back home. I’m just happy to be away from work, spending time with my kids and our friends. ” title=”Razz” />

[Ski]

in reply to: FYI all, I’m going on vacation! #1069381

Thanks all! Take good care of each other! ” title=”Very Happy” />

[Ski]

in reply to: Agranulocytosis #1069371

White blood cell count is the measurement that will show agranulocytosis.

[Ski]

in reply to: Numbers are Back and they’re not good #1069399

It’s really impossible for them to know when hypo will hit, so try not to blame the doctor’s office too much. After I had my first (far too small) dose of RAI, my doctor left me a standing order at the lab in case I felt hypo so we could catch it early. I was in there every few weeks, absolutely SURE I’d gone hypo, but no. No one can know for sure without blood work, and even then what you feel may not be hypo, so that’s part of the trouble with this WHOLE thing…..

[Ski]

in reply to: ski..please read.. #1069388

Once that thyroid’s gone, boy, the pituitary just keeps shouting until it gets some response, so that’s why the numbers climb. It doesn’t necessarily mean you’re "more hypo" than the next guy, it just means the pituitary’s been trying to get the message across for a long time. You can’t have less than no thyroid, if you get my meaning.

The TSH responds to your T4 levels as an "average" of levels over several weeks’ time, so those tend to change rather slowly, and right now, your T4 levels are going to be the best to go by, but even those need a few weeks to build up.

It’s not wise to test too often, and it’s not wise to raise your dose too quickly either ~ your body reacts to a radical shift in thyroid hormone in ugly ways, so you need to wait and wait and wait while things slowly improve, and only go up one dose level at a time until you find the right spot.

Sorry, but that’s kind of the nature of the beast. At the hypo side, there’s really not much that’s critical in terms of needing an ER visit, unless you’re hypo and NOT taking any replacement hormone. You’ll be tired, no question. You’ll be lethargic, and have trouble keeping a thought in your head, absolutely. But these things will improve daily, EVEN on the same dose of replacement hormone.

The best possible method for getting your levels back where they need to be is to test every six weeks, then adjust the replacement hormone dose as necessary. After you start a new dose, you will always have a couple of weeks where you may feel a little high, little low, then things stabilize at some level. You’ll always be circling normal, closer all the time.

At first, you will go by the T4 only, if you want to know how you’re doing. After a few stable T4 readings, the TSH can be relied upon again, but keep in mind the way it functions.

[Ski]

in reply to: And the verdict is. Drum roll please…… #1069518

The way you feel right now is probably more likely due to the hypothyroidism, which the synthroid is correcting. Take it VERY easy, keep on taking that Synthroid ~ call your doctor if you’re overly concerned, but remember you were VERY VERY hypo, so this is going to take a while.

[Ski]

in reply to: Need Advice: Methimazole Allergic Reactions #1069426

There is a chance of a very serious allergic reaction that can be dangerous, so please talk with your doctor’s office ASAP. If Benadryl isn’t helping, that’s not a good sign. I would request a call back today to determine whether they feel you should either switch meds or at least stop for now.

[Ski]

in reply to: Question re: weight gain #1069435

The fluctuations in thyroid hormone caused by the antibodies and the ATDs can mean periods of hypothyroidism, which changes the way your cells behave, and that can result in some of the weight gain as well. As levels normalize, and stabilize, those anomalies typically go away. Work on getting your thyroid hormone levels right and things will eventually calm down.

[Ski]

in reply to: interpersonal problems #1069442

I would recommend against making any final decisions about a relationship while you’re still unwell. You do not have any idea how much of the way you’re feeling is simply the condition and how much is truly a relationship issue. Stay separated if you feel unsupported, etc., and things do not seem to be "in sync" between you, but don’t make it legal during this time, please. I know that when my levels are off, all kinds of things bother me to a truly irrational degree ~ please don’t take that badly, I have no idea what the events are that you are talking about, but I do know that sometimes, at this point in treatment, we think things are red when they’re green (emotionally), if you know what I mean. There’s no harm in giving it more time.

[Ski]

in reply to: Phew I made! I am now thyroid free and home! #1069454

Thanks for checking in, I’ve been thinking about you! I hope you notice improvements quickly, and your healing goes smoothly!

[Ski]

in reply to: Could someone help me understand hypo? #1069449

You’re only hypo until your levels are normalized using replacement hormone, but you still need to be monitoring your levels to some degree even after you’ve stabilized. Annually, at least, once your levels have stabilized and you’re feeling well.

The antibodies can’t change your thyroid hormone levels any more, but you may still experience TED, pretibial myxedema, and some lingering issues with memory (at least in my experience), though the memory issues do improve over time. The fact is that right now they are beginning to understand that Graves’ may be a "syndrome" rather than just one disease, so it’s possible there are other forms of antibodies acting on us that no one knows about, and that means we may not be "done" with Graves’ after our thyroid is gone, but we have removed the element of Graves’ that can turn out to be fatal.

Research continues, we’ll get the latest in October. ” title=”Very Happy” />

[Ski]

in reply to: im afraid to. . . . #1069479

Truly, this is NOT medication, it’s not chemical in the way you’re thinking. This is hormone your body no longer makes, hormone your body desperately needs, AND it takes time to build up in your system before you’ll feel the full effect, otherwise you’ll just continue to feel worse and worse all the time, so PLEASE do this for yourself.

It’s exactly the same hormone your thyroid would be producing if it could. Does that help?

Final words: hypothyroidism is just as fatal as hyperthyroidism. You just go quieter because you’re so tired.

[Ski]

in reply to: My big day! RAI tomorrow #1069608

The RAI can take a while to have an effect, but typically it does the most possible damage in the first six weeks, then continues to affect the thyroid on some level for up to six months. This is, of course, in addition to the antibody attack, which also destroys thyroid cells, but does it much slower than the RAI. Still, with the cumulative effect of the initial dose and its ongoing action, the two together can still produce some drops in thyroid hormone for months after RAI.

It ALL starts with the RAI dose that’s chosen. My first dose was just too small to get it done. Had I received just a couple of millicuries more at that time, I could have avoided my second dose. A large enough dose could almost guarantee a complete drop into hypo within a couple of months. These are questions to ask beforehand (which, obviously, I didn’t know about, and didn’t do, prior to my first RAI).

Still, it’s not as if I went and got tested at six weeks after my second dose and VOILA, hypo. It took a while longer than that to truly "hit bottom." This whole thing, from onset of disease to stabilizing levels, is one big waiting game. We do what we need to do, then we wait and see.

[Ski]

in reply to: Latest results – feedback welcome… #1069487

We aren’t able to evaluate your test results, that’s your doctor’s job ~ if your levels are changing every week, they are not stable. We usually recommend waiting at least six weeks after any dose change to test your levels, simply because it takes that long for your body to fully metabolize the new dose level and show its "actual" results while taking that dose, so it may just be that you’re testing too often and putting yourself in the position of chasing a moving target, with inaccurate information to start with each time.

I would sit with your doctor and ask every single question you have, because six months after RAI you should be getting very close to stabilized levels. Ask the doctor if they believe there could be any other elements to your fluctuating levels ~ various foods, medications and supplements can play havoc with the thyroid hormone, so make sure you’re taking it as recommended, on an empty stomach, and separating your mineral supplements and other medications by enough time so that they cannot affect your absorption of the replacement hormone. Also make sure your body is not going through any other natural hormonal changes that may affect your thyroid hormone levels, and ask the doctor if they feel there’s any chance you are suffering from a completely separate condition that could be affecting them.

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