[Denial]

#1018430

I recently had emergency surgery and while recovering I couldn’t believe how bad I felt. Went to postop and doc was sure it was thyroid. So lots of tests later and I am autoimmune hyperthyroid. I have been taking methimazole since April. My dosage has slowly crept up and currently at 40mg per day (1/2 in morn and 1/2 at night). There has been no decrease in thyroid levels in fact numbers look like they are increasing. I have found no documentation where methimazole doesn’t work at all. I am of small build and am also on 480mg/day enderol (propanalol).

When I originally spoke with endo rai was not an option because I have 2 children and teach children. The risk was too high. I spoke with the nurse this week and they are now recommending rai. Obviously I am concerned for not only my safety but the safety of all my children.

I have always had severe allergies,but since the thyroid issues they have haulted which seems strange. I used to itch so bad at night hubby would kick me out of bed.

So here is the big question, could this all be caused by something else. I am not convinced about rai because I keep being the 10% girl… You know the one that doesn’t quite fit the mold. I have lost many organs and none to what would be "normal" presentation. Seems like a functioning thyroid is more important than the other already missing organs. I just don’t understand how a drug specifically made for a purpose (and others feeling better almost immediately) could just not be working.

I have been reading so much on the subject but it seems that there is so much that is just guess work. Perhaps my endo and I are guessing wrong. I need help. I was ok thinking the mess were working as I just don’t want to intentionally kill off a part of my body. What if my body finds something else to attack??? Yes I know I am in denial, but can you see why. I have noticed quite a few comments out there saying they feel crazy…must be part of the disease too I guess.

Please help me clear my path and return to the balance that is so dear. Harmony and peace is what I desire most urgently.

[Bobbi]

#1064760

A diagnosis of hyperthyroid is relatively simple: a blood test shows elevated levels of actual thyroid hormones (typically T4 and T3) and repressed levels of TSH (thyroid stimulating hormone). That’s all there is to it. If you have too much thyroid hormone, and too little TSH, you ARE hyperthyroid.

Now, as to what is causing it? There are a few things that can cause someone to be hyperthyroid, but the huge majority of times it is autoimmune Graves. Hyperthyroidism can be caused by an infection, but there would be signs of infection. It can also be caused by an "autonomous node" — essentially a contained cluster of thyroid cells that have gone berzerker. Whether or not this is the case can be absolutely demonstrated by the uptake and scan tests we are sometimes given. If it is an autonomous node the scan will show only small portions of the thyroid cells have taken up the test material. If it is Graves, the entire thyroid will be lit up with the test material. But the treatment options do not change. In fact, with an autonomous node, the treatment of choice is RAI. The healthy cells do not take up the RAI, only the node does. So most of the thyroid is left intact.

One thing to remember about ALL of our treatment options: If you have Graves — the autoimmune disease — NONE of the treatment options get rid of the causative agent — i.e. the antibodies. So while you still have a thyroid, if those antibody levels soar, you will need more of the medication. And if the antibodies lessen, you will need less. All methimazole does is block the chemical reaction by which thyroid cells take iodine from our diet and make thyroid hormone. Methimazole doesn’t target the antibodies.

It is IMPERATIVE for your long-term health to eliminate hyperthyroidism. Hyperthyroidism has a devastating effect on our health over time. If the drug treatment doesn’t work for you, and you find yourself facing either RAI or surgical removal of your thyroid, please know that we can, and do, live healthy lives without our thyroids.

I do wish you good health soon.

[Denial]

#1064761

So of course I spend little time sleeping and a lot of time thinking. So inevitably I thought of more. Could the methimazole be working in some way and the numbers still waiting to go down (it has only been a couple if months)? Here is the reason I ask. I had every symptom: nails becoming unattached from the nailbed, hair falling out, severe trembling, heart racing, lots of teary eyes (but not protruding), Loss of voice, and a goiter. The goiter is visibly smaller, my voice is almost back to normal, my hair has slowed in falling out, gone from 4 nails to 3 becoming unattached. And you can see them growing every so slightly back in.

I know the numbers seem to be the way to look at all of this, but the symptom relief has got to play some part. I know we all can live without some organs and glands, believe me I know. I guess I am not feeling the urgency to rush into RAI based on symptoms (and seeming regenerations). Could the large amout of beta blockers be helping the graves symptoms? I actually feel good. My only problems are occasional insomnia (maybe one night a week) usually because I can’t getcomfortable with the sweaty hands and feet.

I realize all of this is an honest desire to explain it all away and that this is not going away on it’s own. I am quite saavy but definately feeling overwhelmed by this one.

[Ski]

#1064762

Beta blockers are very good at hiding our symptoms, but they do nothing to address the thyroid imbalance. We are given beta blockers so we don’t feel so awful, and they help, but thyroid hormone lab results are the gold standard as to what’s going on inside your body, and continuing, separate treatment (besides the beta blockers) for that imbalance is imperative.

[Author]

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