[Bobbi]

in reply to: Had the Scan Done #1171863

Do not try ANYTHING without your doctor’s OK, Alexis. There is a ton of bad information on the web about supplements (and everything else).

I am sorry that you don’t have thyroiditis. I know that you were hoping for a much simpler diagnosis. Keep in mind — we DO get well again, and I hope you are feeling much better, and soon.

[Bobbi]

in reply to: Worried… #1171700

I do wish him good luck with the surgery and hope he is feeling much better, soon.

[Bobbi]

in reply to: Is This Normal? #1171824

To find out what is causing your problem, you need a doctor’s diagnosis. Sometimes redness, bloodshot-looking eyes, can be caused by something other than thyroid disease. But. If your problem is caused by the autoimmune disorder (TED):

Typically there is a “hot” phase, where symptoms develop over a period of 18 months to 3 years. This is followed by a “cold” phase where the symptoms remit somewhat, and the disease essentially goes dormant. Our doctors typically wait and watch during the hot phase, and are reluctant to intervene unless our optic nerve becomes threatened (pinched) by expanding eye muscles. The reason to watch and wait is due to the fact that the side effects of treatment possibilities (like IV steroids) are significant, and common; and a lot of the time we can avoid those side effects completely, if our vision is not jeapardized. (Because once the hot phase subsides, our symptoms remit somewhat, if not completely.)

Protrusion can be a sign of TED but sometimes we have lid retraction instead. You can sort of tell if there is actual protrusion if you can see the white portion of the eyes underneath the colored portion of the eye. If all you are seeing is white at the top of the colored portion of the eye, it might be that what you are calling protrusion is more precisely “lid retraction.” Lid retraction occurs when we are hyperthyroid, and the muscles of the upper eyelid pull tight. We get an open-wide stare look about us, which, like true protrusion, opens more of the eye to the air and causes it to become more dry. But it is not caused by the expansion of muscles behind the eyeball — it is caused, instead by muscles in the lid of the eyes.

Red veins in the whites of the eyes are not commonly associated with TED to my knowledge. I know folks who have had similar problems who have no TED or thyroid disease, at all. I think it is really important that you get yourself to an opthamologist sooner, rather than later, so that you actually know what is going on. All we can do here is provide guesswork, which isn’t totally helpful. And, if the wait for an opthamologist is “months long” then perhaps you could consult an optometrist in the interim? Some of them are well-enough trained to provide help of a temporary nature.

[Bobbi]

in reply to: Thyroid immune globulin #1171820

A layman’s understanding: The thyroid immune globulin is an antibody. Globulins are a protein that make up some of the immune system. So, while some folks with thyroid cancer can have high antithyroid antibodies it does not mean that the mere presence of those antibodies indicates thyroid cancer. Even if ALL people who had thyroid cancer had this antibody, it would not mean that all people with the antibody had thyroid cancer. To take it out of the realm of health issues, change the terms a bit. All Native Americans have brown hair and brown eyes. It does not, however, mean that all people with brown hair and brown eyes are Native Americans.

[Bobbi]

in reply to: Confused, Frustrated and Scared #1171785

Many of the symptoms that you included are more symptoms of hypO, than hypER. And you are, according to blood work and the interpretation by the doctor, neither hypo, nor hyper.

Uptake does not define hyperthyroidism. Blood tests do. People who are hyperthyroid with high uptakes are not sicker than people who are hyperthyroid with low uptakes. All the uptake test provides is an indication of whether or not RAI is appropriate; and the scan portion of the test shows whether there is overall thyroid activity (diffuse) or whether the problem might be related to nodules.

None of this means that the symptoms that you are suffering are all in your head. There can be lots of conditions that will create any number of the same symptoms that we get with thyroid malfunction. What you need to do, since you DO feel lousy, is now get your doctor to explore other possible causes of your problem.

[Bobbi]

in reply to: Worried… #1171696

One thing to keep in mind: living without a thyroid is no big deal. It may not be anyone’s “first choice,” but if your son’s doctor should recommend removal, it is important to recognize that it is a viable way to return your son to health. There are lots of us who, for one reason or another, have had our thyroids removed. And the replacement hormone pill we take works to keep us healthy.

[Bobbi]

in reply to: RAI Questions #1170428

mvk — approximately one week (give or take) after RAI we become very much more hyper than normal. While 16 days is a bit long for the process, it is possible that what you are experiencing has something to do with your damaged thyroid cells eliminating their stored supplies of hormone into the body pretty much all at once.

Then, another possibility is that as those cells are not making any thyroid hormone any longer, we sink towards going hypo. Our bodies react to the swing out of hyper in varying ways, but I remember muscle cramping, which I tried to alleviate with warm baths, and with slow stretching manoeuvers on the floor. Also, I was able to sleep for the first time in a long time, so I felt very tired, and did a lot of resting. Try to keep in mind that NONE of what you have been experiencing to date is “normal” for your body, and that it will take time for you to feel normal again.

[Bobbi]

in reply to: thyroid storm?? #1171770

Near the top of the main bulletin board page, on the left hand side, is a box that says “New Topic.” If you click it you can start a new thread.

[Bobbi]

in reply to: How Much Does Eye Dryness Improve? #1171775

Kells1, while you are waiting for the eye specialist, start using artificial tears types of eye drops as often as you feel the need. It will protect the corneas from drying out, and possibly getting scratches. Some of us need to put them in every 15 minutes or so — it depends upon the individual. But if your eyes are feeling dry, use the drops. BTW, our doctors recommend that we use the artificial tears without preservatives, that come in single dose packets.

[Bobbi]

in reply to: thyroid storm?? #1171764

We are not doctors here, and it sounds like that is what you need: a doctor. Please call yours, or take yourself to a walk-in clinic to get things checked out.

[Bobbi]

in reply to: In need of support #1171720

A couple of thoughts, Alexis. We get intensely more emotional than normal when we are hyperthyroid. Try taking a deep breath, and try to relax a wee bit.

Second: there’s a whole lot of misleading information on the web. DO talk with your doctor about this new information you’ve found, but do not assume that it is “gospel.” I’m not saying what you found out is necessarily bad information, only that you need to assume it may be, and check it out with a professional (your doctor) rather than assume it’s real and let it scare you. Knowledge is empowering, so once you know the objective facts (from your doctor) you can figure out how to deal with it. If the RAI accumulates in the breast milk, perhaps there’s a medication that can be given to help dry it up quickly beforehand? I got mastitis while nursing one of my children, and dried up almost overnight, so I wonder if your thought that you would have to wait “months” for your treatment isn’t an exaggeration. I do hope that is not the case anyway.

[Bobbi]

in reply to: Just dropping in after TED orbital Decompression #1170532

How awful, Jules. Sending hugs, however inadequate those might be.

[Bobbi]

in reply to: Recently Hyper #1171707

Tapazole is an antithyroid drug (ATD) that acts as a chemical block to the production of thyroid hormone. Your doctors have to find the right dose of it to block just enough thyroid hormone production to make you “euthroid” (normal levels of thyroid). If you get too much of the drug it will make you hypothyroid; if you get too little, you will remain hyperthyroid. So it is a balancing act. And it will require dose changes from time to time.

The vast majority of the time, people tolerate the Tapazole well. There are some negative side effect possibilities (they happen rarely, but you should know about them), so discuss the drug with your pharmacist and your doctor.

And, yes, you should see weight gain once you are at controlled normal levels of thyroid hormone. When we are hyperthyroid we lose muscle mass, but once we get our levels back under control the muscles slowly returns. Maybe not all of it, but a good part of it. With that returning muscle we see weight gain.

I hope you are feeling better soon.

[Bobbi]

in reply to: Worried… #1171692

Undetectable TSH means that the pituitary gland has shut down its production of thyroid stimulating hormone (TSH). Or at least lowered it so far that the normal tests for TSH cannot find it. The pituitary acts as a kind of thermostat for thyroid hormone levels. In a healthy person, when there is too much thyroid hormone the pituitary lowers its levels of TSH. Or, conversely, if it detects too little thyroid hormone, it raises its production trying to stimulate thyroid cells to make more hormone. When we have Graves, that mechanism gets broken. The pituitary still works, but the thyroid cells no longer respond appropriately.

[Bobbi]

in reply to: Was Hypo for 2.1/2 yrs Now dx with Graves awaiting operation #1171626

Hi, Hilary:

It really is not wise to tinker with the meds on your own. The doctor — any doctor– will have no idea how to adjust the meds to maximize their efficiency for you, if you are tinkering. I do know that it is difficult waiting to see the doctor when you feel completely off, but if you don’t you will only be increasing the likelihood of being on a constant hormonal roller coaster.

There are individuals who have the antibodies associated with both Hashi’s and Graves. It makes for difficulties in controlling thyroid levels. When I was doing my first research when I got Graves, the information that I had said that doctors preferred to eliminate the thyroid in cases like yours. That is was easier to get constant thyroid levels without the thyroid. I don’t know if that advice has changed any.

I do hope you are feeling better soon.

[Author]

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