[Ski]

in reply to: confusing? recently diagnosed..anyone?? #1071405

Couple of things ~ first, the TSH level lags behind the T4 readings, simply because it is "calculated" by the pituitary based on a running average (weeks’ worth of measurements). Since the T4 has only recently dropped, the TSH may remain suppressed, even for a few more weeks. You’ll probably notice it coming up by the next set of blood tests. In the meantime, the T4 level is likely the best one to watch. (Not sure what T7 is ~ perhaps we have different nomenclatures in different countries, if you’re not from the U.S.) Clarify ALL of this with your doctor.

Second, just because your levels are normal, this isn’t like a virus where you can say okay, ALL GONE, I’m better! Your body has literally been under attack, and reaching normal levels is just the beginning. Now you need to stabilize at normal levels. THEN your body can begin to heal from the assault. That takes time, perhaps months, before you can say you feel like you used to.

In the meantime, a little better every day, that’s all we ask. ” title=”Very Happy” /> Look for the small improvements, rejoice in them. Nothing happens quickly with thyroid imbalance, OR with correcting a thyroid imbalance. Be grateful each day that you’re further along the road, look at what you’ve come through, KNOW that it’s getting better all the time.

[Ski]

in reply to: What took me so long? #1074509

Wishing you luck! ” title=”Very Happy” />

Just as an aside ~ the ATDs don’t automatically lower your white blood cell count. If your doctor had noted such a thing on your blood tests they would have made you stop taking them. It’s more likely that your increased rate of illness had to do with your body’s general weakness from constantly "fighting" thyroid hormone imbalances, even slight ones. It leaves us vulnerable.

If you’re looking at surgery, find a surgeon who does these procedures a LOT, with very low complication rates. That’s putting your best foot forward.

Let us know how it’s going! Glad we could help. ” title=”Wink” />

[Ski]

in reply to: Has anyone experienced….. #1070420

Hi julies,

It’s hard to see here, but literally thousands (perhaps even millions) of patients have had RAI treatment, and I think it’s fair to say MOST of those patients have had successful treatment. Those people who have gone through the treatment and settled comfortably back into normal life do not seek out support boards such as this one, so we have almost no input from them for you to see. The people who come here are usually either new patients (such as yourself), or people who have experienced difficulty with their treatment and are now looking for solutions so they, too, can go back to a normal life and forget all about this.

The symptoms you are having now are due to a massive imbalance in the most important hormone in your body ~ it can be compared to fuel in a car. If you have too much, your body is like a car sitting with a brick on the gas pedal, stressing literally everything in your body.

It sounds like you’ve had a bad reaction to the ATDs, and so you should not take them. (By the way ~ if you tried one and it gave you a bad reaction, you should still be able to try the other. Ask your doctor about that.) The bottom line is that you must treat your hyperthyroidism somehow. Your body will just wear out under the strain.

After ATDs, the only other choices you have that are proven to bring down your thyroid hormone levels are destruction of your thyroid, either through RAI or surgery. I realize it seems a drastic step, but it’s important to treat this imbalance. Before any of the treatments for Graves’ were developed, it had a 50% fatality rate. I would wager that the other 50% were NOT feeling very well.

Remember, destroying your thyroid doesn’t leave you permanently hypothyroid ~ you take thyroid hormone replacement to bring your levels back to the normal range, and then you live your life euthyroid. Granted, there may be a short period where you experience hypothyroidism, but you will be vigilant about your levels, and you will get your replacement hormone dose adjusted until you feel right.

Leaving the hyperthyroidism untreated can lead to all sorts of other problems in your body, including heart conditions, extreme osteoporosis, and other conditions we can’t even imagine, which may get to such an advanced state that you are literally unable to correct them. PLEASE treat your condition and get well. I know that everyone who loves you will want that.

[Ski]

in reply to: confused #1070460

If the meds lower your white blood cell count, you’ll have to stop taking them. That’s the only thing that would make you more prone to infection, the medication does not automatically have that effect on all patients. Only a small number of people experience that particular side effect, it is VERY rare.

As for calcium, I’ve never heard of that being a side effect of the meds either. While we’re hyperthyroid, calcium is leeched from our bones, but that’s about the hyperthyroidism, not the medication.

Sounds like you have a rather complicated situation ~ learn all you can, and take ALL of your questions (written down) to your doctor.

[Ski]

in reply to: Disability #1070401

One issue you will face is that you are in the very early phases of treatment, and you could easily be healthy enough to work by the time 12-24 months pass, so all the work you do now to ramp up for that hearing may be for naught. You may be able to get temporary disability coverage through your doctor now, while you are still recovering from the hyperthyroidism. That’s a different process than permanent, government disability, and you may find it easier to be approved. It’ll give you whatever period of time your doctor gives you, and the doctor can continue to extend the period if you experience difficulties the doctor does not anticipate at this point. At least start with six weeks’ worth, you should be able to get that based on your current symptoms.

[Ski]

in reply to: Has anyone experienced….. #1070412

Not all weight gain is a bad thing. So many weird things with Graves’! ” title=”Very Happy” />

[Ski]

in reply to: Has anyone experienced….. #1070410

Yep, this can definitely happen. Not sure what the mechanism is, or the root cause exactly. You’re coming out of RAI, so it’s possible that your body is "recalibrating" with the new levels of thyroid hormone. If you’re really concerned, call your doctor and see about having blood drawn to see if there’s been a big change in your levels.

[Ski]

in reply to: What took me so long? #1074507

Hi Russell,

Most people I know have very little trouble with stabilization on thyroid hormone replacement, but there’s no blanket statement I can make for your circumstances, because we’re all different, and different issues arise due to many variables.

If you’ve had trouble maintaining a stable level on Tapazole, you may want to try PTU to see if it’s easier for you to manage.

Thyroidectomy has a high rate of success, in the right hands.

I wish I could give you a "thumbs up" or "thumbs down" on any of this, but the fact is that we really just have to walk the road to find out what it’s like for us.

My doctor said starting from zero with thyroid hormone replacement was easier than working with a moving target and ATDs. For some people ATDs work out okay, for others not so much. I went with RAI and am now well regulated with thyroid hormone replacement. We still need to have our levels checked annually, because our thyroid hormone needs can change depending on age, weight, activity level, fluctuation in reproductive hormones, and other things, but we don’t experience the wild fluctuations that are possible when the antibodies attack, since there’s nothing left for them to attack.

Another consideration is the fact that thyroid hormone replacement doesn’t accumulate in the liver, as ATDs can. Thyroid hormone replacement is chemically identical to the thyroid hormone our body would be releasing, if it could, so there’s no toxicity.

[Ski]

in reply to: Levothyroxine and Soy #1070448

I think soy is one of the substances that can affect our absorption if it is ingested close to the time we take our thyroid hormone replacement. Separating the two by several hours should be enough to avoid the reaction, I think. Talk with your pharmacist next chance you get.

[Ski]

in reply to: Abdominal cramps with methimazole #1070443

I had some horrible abdominal symptoms about a week after my RAI, which no one was ever able to successfully and absolutely diagnose. My doctor put me on a liquid diet for a few days, after which I was "okay." Eventually all returned to normal. My SUSPICION (no one has been able to conclusively say) is that it has more to do with the radical drop in thyroid hormone, than the method by which our thyroid hormone is being lowered. But sorry, I have nothing to prove that. Keep in touch with your doctor, but please don’t mess with the dose of methimazole without full cooperation from the doctor. You can end up confusing the issue as you go forward with methimazole treatment.

[Ski]

in reply to: Orbital Decompression DONE! #1071442

Decompression surgery is complicated, and the structures around the eye are VERY precise, so it’s not uncommon for double vision issues to crop up afterward. This is why the order of surgeries is recommended to be first decompression, then muscle re-alignment, and finally lid correction.

Muscle re-alignment surgery is typically VERY successful, and far less invasive than the decompression.

Double vision can also occur when TED is active and the muscles are affected differently in each eye (very common), and sometimes can actually be partially corrected by decompression.

It’s all very individual.

Some people have decompression twice because they do it separately on each eye, and sometimes decompression must be done early on to save sight (if the optic nerve is in danger), then again after the cold phase. It depends on many, many variables.

Again, each person’s situation is radically different. Our muscles are affected differently, we recover from surgery in a different way, we choose different modes of decompression (removing different bones and different amounts of bone). That’s a very short list of the way things can vary between patients.

[Ski]

in reply to: confused #1070458

Hyperthyroidism is most often caused by Graves’ Disease, but nodules can be the culprit as well, so make sure you get that part of your diagnosis clarified. The Tapazole will bring your thyroid hormone levels down into the normal range, no matter the cause of your hyperthyroidism, I believe. While you figure out the cause of the condition, it’s best to at least manage the levels and prevent further damage to your body.

The weakness in your legs would be due to the "muscle wasting" we suffer while hyperthyroid. It accelerates the muscle "teardown" process, and suppresses the "rebuild" process, so we end up feeling weak as kittens. The most prevalent spots for loss of muscle mass are the large muscles (upper arms, upper legs, chest and back).

Hair loss can occur just because your levels are fluctuating ~ it’s the body’s response to what it views as an emergency situation. It removes resources from the parts of our body that are not necessary to preserve life, and hair and nails are the first to lose resources. In most people, the hair loss is transient, and not very severe. You may notice more hair than usual in the brush and on your clothes, but 99% of the time it doesn’t progress to anything particularly noticeable by others. Once your thyroid hormone levels are normal, and stable, the hair loss will get back to its normal levels (meaning we lose hair every day anyway).

I hope that helps!

[Ski]

in reply to: New to Graves, curious about all this #1070513

Make sure your doctor is testing your FULL thyroid panel, to make sure you can see a recent imbalance. The main thyroid hormone usually tested is TSH, but it is a hormone from the pituitary released in reaction to a sort of "running average" of your active thyroid hormones, T3 and T4, over weeks’ time. If your active thyroid hormone levels have risen substantially recently, the TSH may not have had time to react. Remember too, the possibility exists that you aren’t suffering a thyroid imbalance ~ one of the things that makes thyroid disease so difficult to diagnose is that its symptoms mimic many other conditions. Once we have Graves’, it’s also easy to think everything is from Graves’, and it isn’t always so. Make sure you continue the conversation with your doctor if the initial suspicion is not confirmed ~ "doctor, I know these symptoms are abnormal, so please help me find out what IS the matter, if it’s not my thyroid."

[Ski]

in reply to: ovulation hormones and bad day #1070492

There is definitely a relationship between our reproductive hormones and thyroid hormones. I have not heard the relationship defined, meaning, which reproductive hormones react with thyroid hormones in what precise way, but I know they affect each other, so it wouldn’t be out of the question for ovulation to make symptoms spike. It’s a good thing for you to know ~ that way you may be able to limit your commitments on that day. Give yourself a break ahead of time. ” title=”Very Happy” />

[Ski]

in reply to: Graves disease in Males #1073332

Hi Aravindh,

I’m so happy to hear that you’re feeling better ~ I’ve been wondering! ” title=”Very Happy” />

Now, for your weight. As everyone will tell you, exercise and eating right, those are the best tools to use. As you begin exercising, you may actually want to see a physical therapist, because it’s hard to know where you stand in muscle strength and stamina without one. It’s easy to overdo ~ slow and steady will return your muscles to their previous state of strength, which will go a long way toward taking the weight off. As in all things with Graves’, patience, stay with it, and you will get there.

Pay particular attention to your larger muscles (upper legs, upper thighs, back & chest), because those are the ones that suffer the most damage in hyperthyroidism.

As far as food goes, just eat fresh foods, whole grains, limit fats (I’m sure you know all of this stuff), and watch your portion sizes. It’s just being sensible, but also realizing that we may have a particularly tough row to hoe. If you don’t see immediate results, keep with it, you’ll get there. Don’t starve yourself ~ it makes your body believe you are starving, which makes it hoard fat to keep you alive. Eat regularly, and eat right, and you’ll not only be promoting your own healing, but also getting closer to having your weight under control.

It’s much easier when you’re feeling well, so KNOW there are better days ahead for you!

[Author]

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