[Ski]

in reply to: Question about blood tests #1070307

There are two things that are good to know ~ first, the thyroid hormone level results from "years ago," but also (didn’t mention it before) thyroid hormone level results from a prior physical examination, BEFORE you got Graves’. Many times it’s part of a standard "blood profile" done during a full physical. That will give you a good idea of where your body stood in terms of TSH when it was operating normally, and it can be a good number to shoot for.

[Ski]

in reply to: Pregnancy #1070538

Sorry, this isn’t a question we can answer ~ definitely not in our area of expertise. Check with your obstetrician to know for sure.

[Ski]

in reply to: My Lab test #1070297

Not this soon. More a sign that your body is reacting well to the ATDs. Stay the course and don’t stop taking them until the doctor recommends it. Typically your dose will get smaller and smaller to maintain normal levels, and then at 12-24 months, your doctor may recommend you stop taking them to see if your body has achieved remission.

[Ski]

in reply to: Question about blood tests #1070305

If your levels are outside the normal range, the answer to you question would be YES. If your levels are very far from where your levels were last time you were tested, the answer would be YES. I do hope you have access to your last test results (before this appointment) ~ it may convince your new doctor to adjust your replacement hormone to try and match the prior levels.

[Ski]

in reply to: Worried Mom Questions #1070336

Elevated rates of cancer have not been linked to RAI . RAI has been used as a treatment for GD and thyroid cancer for about 60 years. Your concerns are the precise reason the studies have been so careful to track prior patients. Thyroid cancer patients receive doses up to 10 and even 20 times what we get, and even that is considered a therapeutic dose.

The effects of Graves’ Disease on pregnancy have more to do with the antibodies in your bloodstream than the treatment used. As long as she does not get pregnant within six months after RAI, all the eggs that had any potential of being affected by the RAI (those maturing when the dose is given) are out of the body. It’s likely that only one or two are mature enough to be in any way affected by the RAI, so waiting for six months removes all doubt. Unfortunately though, ATDs and surgery have a better likelihood of reducing antibody levels than RAI, so that is something to consider when also looking at future pregnancy. Higher antibody levels correlate to the likelihood of complications with pregnancy. Though rare, those complications can be very frightening. Antibody tests at the time of pregnancy are a good idea, just so you are aware of any possibility of problems. (This is true no matter what treatment you use. Antibody levels are somewhat capricious.)

Still, RAI is not the only way to remove the thyroid. If the ATDs are not working for her, something must be done, and the only other choices are RAI and surgery. Surgery can be very effective, and many people are thrilled with the results. In the hands of an experienced surgeon, it can actually be the quickest possible way back to health. RAI takes a while to act on the thyroid and completely destroy it, while of course surgery is instant.

Regulating on replacement hormone can be a little tricky at first, but as long as she is vigilant about watching her symptoms and getting her levels tested, she should be able to settle into a good dose for her and then just have blood tests done annually. It can be easier than managing ATDs, since the antibodies do not act on the replacement hormone to change things unpredictably.

Bottom line is that she needs to get her thyroid hormone levels into normal ranges and stabilize them.

[Ski]

in reply to: Armour/Thyrolar?? Any advisement? #1070554

Armour had an issue in prior years with consistency, but they’ve fixed it.

[Ski]

in reply to: DX 10 YEARS AGO, JUST HAD TT #1070314

Once you get on hormone replacement, and get back to your normal thyroid hormone level, you should feel much better. It sounds as if you’ve been basically managed pretty well, so you may not have a very long wait before you get back to what you know as normal. People who were hyperthyroid for a long time prior to the surgery still have healing to do, but you may have already healed, in large part, during your treatment. Remember that when you are initially taking thyroid hormone replacement, you may need to wait 4-6 weeks until you test your levels to see how the dose is affecting you. You’ll be getting closer in to your normal point all the time, but the time between dose changes seems pretty long sometimes. Initially, as a new dose is given, you can feel kind of up/down for a week or two, then you’ll begin to feel things settling in.

Good luck! Glad you’ve found us!

[Ski]

in reply to: TSH numbers after RAI up and down #1070341

It can be a bit of a muddle, especially right now. Just keep an eye out for your symptoms ~ a diary is helpful, and an open lab order is priceless.

[Ski]

in reply to: RAI tomorrow…..very nervous! #1070347

I guess you’re already resting at home after your RAI by now ~ for the most part, there are not really major changes to expect right away. In a couple of weeks you may experience what we call "dumping," which is due to the fact that as thyroid cells die, they release the hormone they’ve been storing, all at once. The effect usually just lasts a few days, and you can talk with your doctor about having the leeway to discuss this with the doctor on short notice and perhaps elevate your beta blocker dose temporarily, IF you feel these symptoms. Not everyone does. I didn’t.

It can take up to six weeks for the excess thyroid to get out of your bloodstream, so you may not feel dramatically different for quite a while. The RAI does most of its work in the first six weeks, but can continue to act (if the thyroid isn’t completely gone by then) for up to six months, so you’ll want to get a good handle on your symptoms in order to figure out when you may have gone hypo and then manage your replacement hormone effectively to get to your normal point as soon as possible.

A symptom diary can be very helpful. You may even want to start now, so you can see clearly anything that’s changing, and more importantly, so you can compare your symptoms now to your symptoms later. Doctors LOVE data. ” title=”Wink” />

Do some reading and learn more about your condition and the treatment you’ve had, and you’ll have an easier time. You’ll get there, we’re all evidence of that! ” title=”Very Happy” />

[Ski]

in reply to: Low TSH, High T3, T4 = GD? #1070361

So true, James! ” title=”Very Happy” />

The low-dose RAI is largely abandoned at this point, because as long as thyroid tissue exists, it has the potential to react to antibodies. We will always have the antibodies, and they fluctuate for reasons we don’t fully understand, so "spikes" in activity have the potential to render you hyperthyroid at any time. At that point, you would think that the idea would be to control your levels with ATDs ~ oops, why start with a low-dose RAI if you’re left with managing on ATDs anyway? On another front, it is safer to do this all in one shot because any cell that is only partly destroyed has the potential to continue acting, but incorrectly. Better all there, or none there.

I actually intended to do a full ablation RAI (back in 1999), and my endo agreed with me, but the radiologist/oncologist who formulated the dose decided he would prefer to do a low-dose (never consulted with either me or the endo). I wasted a lot of time being ALMOST well, and I’m paying for that now. I wasn’t able to get back to exercising as soon as I’d have liked to, etc. etc.

You really sound like you have a good handle on where you stand right now, that is GREAT. For someone who’s hyperthyroid, it’s pretty amazing. ” title=”Wink” /> Oh one point ~ your heart rate may still be low precisely because you are so fit, and even a "high" heart rate for you reads more like "normal" for the rest of the world.

Anyway ~ get your test results and make sure this is your answer, then start asking the question of treatment. It’s a complicated decision to make, but it sounds like you’re well on your way already!

[Ski]

in reply to: More good news to report-exercise #1070380

Congratulations! And thanks so much for the update, I LOVE seeing good news! ” title=”Very Happy” />

[Ski]

in reply to: in week five of rai… #1070386

If you have gone hypo, you will be VERY glad you found it and started taking replacement earlier than later, believe me. The replacement hormone takes a while to build up in your system before you start feeling better again (what else is new? It’s Graves’! ) but seriously ~ if you think you may be hypo, take giant steps to find out and start correcting it ASAP.

[Ski]

in reply to: Help me sleep PLEASE!! #1070663

Hey Michelle,

WHATEVER works, use it and don’t apologize for it. You need your rest, that’s the first priority! ” title=”Very Happy” />

[Ski]

in reply to: in week five of rai… #1070384

It’s possible that you’ve dropped into hypo ranges, so you should do whatever you can to get your blood tested before that appointment ~ it’ll make the appointment more productive, and you can even get replacement prescribed ahead of the appointment so you get ahead of it, if that’s what’s going on.

Thyroid hormone affects SO much, it’s almost impossible to say what can happen as we go through our treatment and healing, because our experiences are all so very different.

The "blank" feeling corresponds to a feeling I had when I was hypo ~ just completely disinterested in everything ~ and once I did see that on a list of hypo symptoms. I think they described it as "not caring about anything."

In any event, I wouldn’t suspect thyroid storm, that’d be very dramatic and anxious, not this strange calm you’re describing, but if you’re feverish and your heart rate is very high, then make sure you get checked at an ER.

Hang in, you’re getting there! ” title=”Wink” /> It never happens as quickly or as smoothly as we’d like, unfortunately…

[Ski]

in reply to: Feeling lousy……but I just want answers. #1070390

Hi Mels,

Well, you’ve certainly run the gamut of all the possible doctors to consult! I am so sorry that this hasn’t been easier for you ~ and I am truly horrified by some of the responses you heard.

The one thing I can answer with any authority is that, if you have one autoimmune condition, you are slightly more likely to end up with another, so that may be the connection between the results you’re getting as far as separate autoimmune diseases.

If you’ve been hyperthyroid and now your thyroid is dying off, there’s a theory that the continued, unresolved hyperthyroidism could have left you vulnerable and so these other conditions developed, but that’s not scientifically proven OR provable, so at this point, if treating for these other conditions helps you feel better, then do that.

Antibody levels by themselves don’t indicate "how sick we are." Thyroid hormone levels are the gold standard for that. Still, if you were hyperthyroid before this, then even though your levels may be normal now, you would still be experiencing a host of symptoms related to the hyperthyroidism, because your body has not yet had a chance, at STABLE levels of thyroid hormone, to heal. That can take a very long time, and the longer you remained hyperthyroid without treatment, the longer that healing process can be.

Make sure you are getting copies of all of your thyroid hormone test results, and try to get TSH and T4 tested each time. As you learn more about Graves’ Disease, you’ll be glad to have the frame of reference. You may want to ask for copies of prior test results, if you didn’t get them at first. They can charge you a nominal copying fee, but they have to give you copies if you request them. They belong to you. Context is what’s important, not necessarily the number you’re looking at from yesterday ~ in other words, seeing the pattern of your levels, whether they’ve been rising or falling, at what rate they’ve been rising and falling, is just as important as knowing where they stand today.

If your levels right now are normal, but fluctuating, that can be almost as debilitating as being out of range. The body is programmed to interpret any big shifts in thyroid hormone as an emergency condition, so you can find yourself having symptoms at normal levels, if they’re moving around.

I hope this helps! Please let us know how things are progressing for you!

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