[Bobbi]

in reply to: Hello from Joy – old member from 2002! #1061261

Ski is still here. I’m not sure whether Kimberly was facilitating when you were last here (my memory being what it is….or isn’t), but she works hard here. Jake only pops up occasionally. Nancy has serious internet access problems.

[Bobbi]

in reply to: Hello from Joy – old member from 2002! #1061259

Hi, Joy, and welcome back. It’s good to hear that you are doing well.

[Bobbi]

in reply to: Has anyone else developed Autonomic Dysfunction? #1063250

Typically — in my area anyway — the major chain drug stores will have a blood pressure machine available, free, near the prescription area. It is an easy thing to check, although perhaps you shouldn’t panic if the readings are slightly "off." There might be calibration issues with the machines. But at least if things ARE indeed "off" you could then go to your doctor for a double check.

[Bobbi]

in reply to: Concerned Elementary Teacher #1061263

Hi, KennethB, and welcome to our Board.

I know of no studies that have demonstrated any differences in effectiveness of our treatment options based on sex differences. Yes, it is true that a much larger percentage of women develop autoimmune problems than men, but the treatments themselves have to do with hyperthyroidism, and not the underlying autoimmune "mistake."

RAI was shown in one, single study about ten years ago — and, thus, I’m not sure whether its results are still considered real or not — to stimulate an immune response that, in approximately 16% of the population given the RAI, provoked a "temporary" increase in eye disease symptoms. It does not cause the eye disease, but it may, temporarily, worsen the symptoms of the eye disease. The same study showed that a concurrent course of prednisone, with the RAI, prevented the temporary worsening of the eye disease symptoms. What this suggests is that if your doctor thinks that RAI is preferable to surgery, for whatever reason, you should discuss the prednisone option with him/her, given your intermittent double vision.

Whether or not RAI is appropriate for an elementary school teacher? Do you have vacation of any type soon? It is summer, and many teachers have a hiatus. That would probably be preferable. We are cautioned to remain a few feet away from small animals and children for about a week after our RAI. (This is typical, but is based on the dose of RAI needed to achieve ablation so it could be longer, or shorter. You’d need to speak with your doctors and the nuclear doctor administering the dose.)

Wishing you good luck with your decision,

[Bobbi]

in reply to: New with Graves, considering meds RAI #1061470

When removing every bit of thyroid tissue is required — as with thyroid cancer patients — surgery is employed WITH a follow-up of a very large dose of RAI. Typically surgery does not remove absolutely all thyroid tissue due to the presence of the parathyroid glands and a nerve that serves the vocal cords that runs through the thyroid. So, even with surgery "some" thyroid tissue is typically left behind, even if it is relatively wee.

Also, iodine is required for healthy function of the thyroid gland. Too much, or too little causes the thyroid (when we still have one) to malfunction in unpredictable ways. Avoiding excessive iodine is always a good idea. But it is not a good idea, while you still have a thyroid, to try to eliminate iodine. While you still have a thyroid, you need that iodine in order for your body to produce thyroid hormone. And if you have removed your thyroid, whether via RAI or surgery, it really doesn’t matter any more. The only place iodine goes in the body is the thyroid gland (to make hormone).

[Bobbi]

in reply to: Levothyroxine hair loss question #1061277

Levothyroxine is thyroid hormone. It is chemically identical to T4 (throxin) thyroid hormone. We lose hair when we have abnormal levels of thyroid hormone, so if you are on levothyroxine and losing hair, it is an indication that the dose is not appropriate. The medication itself does not cause hair loss. Pamphlets like the one you were reading list every possible event noticed while on a medication. In the case of our replacement hormone, though, these "side effects" are almost exactly the same as the "side effects" of having too much, or too little thyroid hormone. The only additional possible side effects are associated with an intolerance or allergy to the inert ingredients used to make the chemical levothyroxine into pill form.

[Bobbi]

in reply to: I am back! #1061318

Hi, JulieG:

Try to keep in mind that stress is a constant in all of our lives. There’s a continuum from good stress (anticipating the birth of a child, taking a vacation) to bad stress (death of a loved one, etc.). We cannot control the presence of stress in our lives. What we can do, is try to take appropriate care of ourselves — good nutrition, rest and recreation — to minimize the effects of stress. One of the most valuable lessons that I learned from my Graves experience is that while I was ill, I could effectively prioritize my activities based on my energy resources at the time, and that the world would not fall apart. I delegated some activities, and found less stressful ways to accomplish others. It took me a while to come to this way of working things out, and I certainly wasn’t the VP of a business, but I think the concept might work regardless. It’s a temporary necessity when you are healing — but it could enlighten you, over all, about how to better take care of yourself, without giving up the things you love to do.

[Bobbi]

in reply to: Radioactive Scan Results #1061338

Good luck…I hope you are feeling much better soon.

[Bobbi]

in reply to: I am back! #1061316

Hi, JulieG.

It takes months at normal levels of thyroid hormone before your body can heal from the problems that hyperthyroidism caused. You didn’t get weak overnight (although it may have seemed like it), and you won’t heal completely overnight either. And I need to repeat "at normal levels" because until you are consistently in the normal zone, your body is reacting abnormally to thyroid levels whether they are high or low.

What you need to be doing right now is looking at progress. And, also, you should be working with the process to restrengthen the muscles that were weakened by too much thyroid hormone. If you have been cleared by your doctor to do exercise, you need to exercise those muscles — wisely — in order to regain strength. Baby steps — not "Exercise", as you might expect it. It all depends upon your condition. From my own experience, I went to a health club run at the local hospital in their out-patient physical therapy rooms. There was an exercise physiologist on duty who analyzed my condition at the start and gave me recommendations on exercises to help strengthen my muscles. His analysis, aided by a computer, was that I had EIGHT Percent (yes of the strength of a normal woman my age at the time I came in. Obviously, I wasn’t going to be doing anything near the exercise of a "normal" woman my age, without working slowly up to it. When I started to lift "weights" for my arms, I used small paperback books, rather than "weights". I could not do the required number of reps using anything heavier. People who do try to jump back in to exercise, without really watching their bodies and listening, can pull muscles or get shin splints, etc. You need to start slowly and pay attention. I also did a lot of sitting on the floor and gently stretching out my muscles. Yoga required too much strength at the time.

We do regain our health again over time, but the process requires patience and persistance.

[Bobbi]

in reply to: TED, OD surgery: burnout phase? #1061304

It is difficult to tell the difference some times, between soft tissue "swelling" and the effect that protruding eyes have on the layers of fat under the eye lids that help to protect the eyes from the front. I experienced swollen eyes at one point in my treatment process for the hyperthyroidism, and it was different from the pushed out fat pads that occurred as a result of the expansion of the eye muscles (which then push the eyes forward in the head). For one thing, the swelling extended down onto my cheek, whereas the fat pad issue stayed pretty close to my eyes. I don’t know if that helps. Anyway, protruding eyes will push out the fatty tissue around the eyes, and appears like swelling, and while that may subside some when the hot phase is over, it may never go away if there is fairly significant protrusion.

[Bobbi]

in reply to: Radioactive Scan Results #1061336

First off, it won’t necessarily help you to know what dose any of us had. The dose is determined by not only the uptake, but the size of the thyroid determined by the scan. No two people will necessarily have the same numbers.

Side effects of RAI? Sore throat. And a week or so (give or take) after RAI, we become more hyper than normal when damaged thyroid cells start dumping their stored quantities of hormone into the body all at once. They are not making new hormone, so the period of more intense hyper symptoms is marked in days, but it can still be troubling if you don’t know about it in advance.

I do wish you good luck, and good health soon.

[Bobbi]

in reply to: lab results #1061323

No one here is qualified to interpret lab results. It can help for you to get a copy of the lab report, where the lab will indicate whether a specific value is "in range" or "out of range" high or low. Even knowing that, though, it will take a doctor to tell you what is going on.

[Bobbi]

in reply to: New with Graves, considering meds RAI #1061463

I think it is very helpful to make an OBJECTIVE list of the pros and cons of the different treatment options. Online anecdotal commentary may not be helpful. Most of the online boards are dominated by illness, not health. Think about it: how much time would YOU dedicate each day to following a board and posting, if you were healthy and living your life? Evidence? Go through our archives and read posts from every six months or so. You will see that the names change regularly, but the stories remain the same. But once people get healthy, they drop off, rarely to be heard from again. Here, the NGDF tries to keep healthy people posting by naming us "moderators." Kimberley (meds), Ski and I (RAI), are here to give you our input and try to give perspective. Shirley also is a help, and she had her thyroid removed surgically.

So, try to make an objective list of the pros and cons. Then, allow your emotional response to things to weigh in. There are three, proven effective treatment options. Your doctor will give you his/her advice. Listen carefully if there are medical reasons why he/she thinks that you should do one over another. That matters. Medicine is not a "one size fits all" type of thing. Some of us should avoid specific treatment options for very good medical reasons. Your doctor will indicate those.

It’s not an easy thing to decide, but know that most of us regain our health. Our treatment options do work in the majority of cases to control hyperthyroidism (the enemy).

Wishing you good health soon.

[Bobbi]

in reply to: Can stress cause a hyperthyroid recurrance? #1061363

Yes, unfortunatly, major stress — whether it’s "good" stress or "bad" — can cause hyperthyroidism to recur.

[Bobbi]

in reply to: euthyroid eye disease and small town living #1061452

Don’t just blame it on a small town: my mother had trouble getting the proper diagnosis and treatment living in a big city. Sometimes the docs just miss things.

Also, be careful of recommendations you might read here on the WEB. While there is good information available, a huge amount is either bogus or dated (i.e. old enough to be meaningless due to new research information). So, if you read somewhere other than a well-vetted medically sound site that you should have X tests done, check it with your doctors.

And, to make a recommendation: ” title=”Very Happy” /> To emphasize a point that Kimberly made, some people develop the eye disease before going hyperthyroid. Actually some people get the eye disease before other thyroid problems develop too, not just Graves. When I was diagnosed with Graves, the eye disease was called "Graves opthamopathy." During my treatment, doctors began to call it "THYROID-related opthamopathy." I asked my eye doctor why, and was told it was because more and more cases were showing up where the person had other thyroid issues, not just hyperthyroidism. So my point here is to make sure that when you get your annual physicals done (and do get an annual physical, if only just blood work from here on out) make sure that the doctor checks your thyroid function. It’s a simple part of a blood panel, but it could save you a lot of grief to get early warning on thyroid malfunction, if it ever should occur.

Good luck,

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