[Bobbi]

in reply to: Being hypo and bloating #1065999

No, bloating like this is not typically associated with hypo — especially minor levels of hypo — and, if your husband is on 150 mg (or whatever unit) of replacement hormone, the likelihood that he is still hypo is questionable. We are only hypo if we are not taking the replacement hormone in the proper dose.

Is your husband taking the replacement hormone first thing in the morning, on an empty stomach, with a good amount of water, and then waiting a half hour to an hour before eating anything? (This assures that the replacement hormone gets absorbed well into the blood.) He should not be taking any vitamins or minerals or other medications at the same time as he takes the replacement hormone (unless he has been so instructed by his doctors).

I recommend that you call his GP and try to find out what is going on . It may be thyroid related, but if it is not, you are wasting time looking for a thyroid cause that perhaps doesn’t exist.

[Bobbi]

in reply to: newby and questions about methimazole #1066080

Hi, Kathyz:

An alarm went off when I was reading your post about the supplement your naturopath put you on. As a result, I want to urge you to follow SKi’s advice, and talk with the endocrinologist about it. It may do no harm. Many supplements don’t make a huge difference. But if it does in fact boost the immune system, it may also boost the numbers of antibodies that are attacking your thyroid, and thus make it necessary to adjust the dose of methimazole.

[Bobbi]

in reply to: Very new one… #1066021

First of all, Waitman192, CONGRADULATIONS on your graduation from med school, and good luck with your residency.

Nodules. Hot nodules are typically not a problem, but cold nodules are sometimes malignant. My husband is at risk for thyroid cancer, having had his thymus irradiated when he was a baby. He turned up with several cold nodules a few years ago, and had a needle biopsy done of them. At the time, we were told that a small percentage of cold nodules have been shown to be malignant, and that his history made it more likely that they could be malignant. But his chance of them actually BEING malignant was only about 30% or so, even with that history — or so we were told. You could possibly find out more about the issue on the thyroid cancer survivor’s website: ThyCa is the name of the group. They have good info there about the issues more typical for thyroid cancer.

[Bobbi]

in reply to: TSH levels always *out* #1066091

Once a month might be too frequent. If you get blood work done before the TSH has had a chance to "catch up" with your dose change, you could remain on the hormonal roller coaster. TSH is a rolling average, not an instantaneous figure. And there is definitely lag time involved. So, if you test it too soon, your doctor might call for an increase in your dose that will prove to be too much over the long run….. If it works for you, fine. But if you are still plagued with ups and downs, you may want to consider going to six weeks, or two months between tests to space things out a bit more. And if you are feeling well, extend it back to the three months. I get my blood tested once a year now. And it is consistent.

[Bobbi]

in reply to: TSH levels always *out* #1066089

Hi, Jo.

I was reading through your last post and want to respond to a comment you made (or a question, perhaps it was). We are never given TSH replacement. The TSH is a hormone that is released from the pituitary gland in response to thyroid hormone levels in the body. The pituitary "reads" our blood levels of thyroid hormone all the time, and acts like a thermostat for thyroid hormone production. If there is too little thyroid hormone the pituitary will release more TSH (thyroid stimulating hormone) to prod thyroid cells into producing more hormone. If there is too much thyroid hormone in the body, the pituitary lowers its production of thyroid hormone. Think of a seesaw with thyroid hormone on one end, and TSH on the other. As one goes up, the other goes down. So, when our TSH is "off" it means that our thyroid hormone levels are off. In your case, having had RAI, when your TSH is high (showing too little thyroid hormone) your doctor raises your dose of replacement hormone.

[Bobbi]

in reply to: PLEASE HELP ASAP PLEASE #1066030

We really cannot give you medical advice like that here, Beth. And it would not be in your best interests to take any medical advice from people off the internet, either. It does not help at all that you’ve been given what seems to be contradictory advice from your doctor’s PA and the on call nurse at the endo’s office. I think you are going to have to use your own best judgment here, because you know yourself and your body well enough to decide if you are in a crisis (emergency room) or just "off." (immodium/watch and wait) I know you are scared. Part of the problem undoubtedly is that the hyper levels of thyroid hormone are enhancing your fear, adding to a sense of panic. (Tremors, nervousness, edginess — all those aspects of being hyperthyroid play into any normal fear we have.) I was a jittery mess while hyperthyroid, even without the added concerns that you have right now. It makes it difficult to sort issues like this one out.

I wish I could be more help, and I do hope you are feeling much better soon.

[Bobbi]

in reply to: FEET #1066042

Hi, Paloma:

Eye floaters have nothing to do with Graves. People with Graves get them, but so do vast numbers of people who have never had thyroid disease, and never will. The tingling feet is not something I’ve heard of with Graves, either, but it does sound annoying. As for the numb spot on your shins, the only way to tell if it’s pretibial myxedema is to have the sking biopsied by a dermatologist. Pretibial myxedema (PT) isn’t, strictly speaking, a rash, either. It is a thickening of the skin — it looks a bit like the rind of an orange: pitted and harder than normal skin. It can be look a bit reddish but it occurs in patches, not dots, typically.

We DO get through this, Paloma. But if you are getting depressed about the whole process, please talk with your doctor.

[Bobbi]

in reply to: Too much levothyroxine #1066067

While it may be that your thyroid levels are indeed "off," if eating something fixes a problem, it sounds to me like thyroid issues might not be the cause of that particular problem. You might want to check with your doctor.

[Bobbi]

in reply to: newby and questions about methimazole #1066072

You asked questions about methimazole. Basically, it acts as a chemical block to the production of thyroid hormone. If you take too much of it, yes, you could become hypothyroid. If you take too little of it, you could remain hyperthyroid. So your blood has to be analyzed periodically and adjustments will occur to your dose. You, personally, should not "play" with your levels, if you wish to get well in the quickest possible time. Your doctor will look at blood test results and give you instructions for how much to take. If you play with the dose, between blood tests, your doctor will have no way to know what an appropriate dose would be. It could put you on a hormonal roller coaster if you do not take the meds as instructed. Having to work with the doctor can be frustrating at times — especially when we "feel" that things are off — but it is the best way to quarantee progress instead of setbacks. And, sometimes, what we "feel" about where we are in the scheme of things does not jibe with the reality. For example, some folks are diagnosed before they see the damage hyperthyroidism can do, before they have been made horridly ill by the disease. Those folks may "feel" just fine hyperthyroid. So adjusting their levels down may require them to get used to feeling normal with slightly different "settings." But being even a little hyperthyroid causes us to lose muscle over time, and to lose bone over time. And it damages the heart little by little. So it is really in your best interests to take the medications as prescribed, and get your body back to normal levels of hormone to halt the damage.

As for diet, what your body really needs right now is good, balanced nutrition. There are websites that will tell you to avoid certain nutritious foods because they contain "goitrogens" — i.e. they have a chemical in them that can increase the size of the thyroid if taken in too large a quantity. The reality is that it is not humanly possible to eat enough of these foods to make a difference. If there is one "food" item that should be completely avoided — as if it were poison — it is kelp. Kelp has a huge quantity of iodine in it which can interfere in the thyroid’s hormone production in UNPREDICTABLE ways. It might slow down the production of hormone sometimes, but it also might provide fuel for the flame in others. There are times — typically if we are being given a thyroid uptake and scan test, or if we are approaching treatment RAI — we will be told to avoid seafood in general. But under normal circumstances, there are no major foods we need to avoid as a general rule. (Other than kelp. — and if you have removed your thyroid, even that prohibition goes away, I think.)

[Bobbi]

in reply to: New to Graves disease and Methimazole and confused! #1066097

As Ski pointed out, Beth49, it is not at all uncommon for people to take methimazole as a single daily dose. Methimazole has a fairly long biological "life span" in the body. Unlike PTU (where the biological life span is close to 8 hours) which has to be taken evenly spaced throughout the day, the beauty of methimazole is that it you only need take it once every twenty four hours. That is, indeed, one of the reasons doctors like to prescribe it. So, I don’t think you need to fret about the fact that the doctor wants you to take a larger dose than you are on, and still keep it at once a day. As for the size of the dose itself, that is a calculation based on the results of the most recent blood work. Could it be slightly too much? Yes, but it might be just fine. And the only way to know is to take the prescribed dose as directed. There is a bit of a guessing game that goes on with the medications like methimazole and PTU. You and your doctor are looking for the dose that is just right –not too much, not too little. The only way to find that out is to adjust the dose and redo the blood work a handful of weeks later.

As Kimberly pointed out, higher-than-normal blood pressure is often associated with hyper levels of thyroid hormone. If that is what is behind your high blood pressure issues right now, getting your thyroid levels normalized, and controlled, can lower the blood pressure. So, while the pharmacist is correct that the particular blood pressure med you are being put on can be not quite as effective while you are taking methimazole, that may not be a problem if your blood pressure lowers along with your thyroid levels. Being "not quite as effective" is not the same thing as being completely not effective, if you see the distinction here.

If I am hearing you correctly, though, it seems you are fretting about having to take medications period. You said, I think, that you have a history of side effects from meds in the past? I am somewhat the same, so when I was put on PTU, I fretted about having to take it, as well. And I had to take several of the little pills three times a day. It worried me. But you absolutely MUST do something to get your thyroid levels controlled back in the normal zone, Beth. The enemy for you right now is not the meds, it is the disease. And that has to be your focus. You must — and CAN — get your thyroid hormone levels back to controlled "normal." One way is to try the methimazole, and take it as the endo directs. If you cannot do that, if you cannot bring yourself to take the dose the endo has prescribed, then you must talk with him about other options — like RAI or surgery. Again, the WORST possible thing you can do is allow the hyper levels of thyroid hormone to remain in your body. There might be reasons why you HAVE to stay on the meds. Some folks cannot do RAI or surgery, due to individual medical reasons. Some folks must bring their levels down with the meds before they can consider the other options. So, it may help you, a lot, if you can focus on the disease as your enemy, rather than whatever treatment option has been recommended. Typically, no matter WHAT treatment option we are on, it is much, much safer than remaining even a little bit hyperthyroid.

[Bobbi]

in reply to: Driving a car #1066102

I stopped driving for a while. The double vision was terrifying in traffic, and the lack of depth perception when I patched one of my eyes caused me to dent my car when I was practicing away from other cars: I scraped the sides of immoveable objects. So I didn’t think patching was the right way to go for me. Not to mention the other folks driving on the road! It’s a burden, to be sure. Where I live, there is really bad mass transit, so if you cannot drive, you cannot go anywhere unless someone else is willing to take you. Anyway, those days are gone, thank goodness. I was one of the lucky ones whose double vision remitted over time. And I am back to being able to drive.

[Bobbi]

in reply to: Weight gain from hyper to hypo? #1066180

Good luck in the coming days, Stephg. I hope you are feeling much better — and soon. Keep in mind though, that as thyroid cells die off, they will release their stored supply of hormone, so you may go through a few days feeling more hyper than you would like. This usually happens about a week into things.

[Bobbi]

in reply to: Eye Floaters #1066305

To post a topic, kylar, you must be in the main NGDF.org list of topics. At the top of the list of topics is a hot button called "New Topic." If you push that, you will be given a screen that will allow you to post a new issue.

[Bobbi]

in reply to: 4 months Post RAI-Change with a Vengeance #1066128

The "deer in the headlights" look can be a direct result of elevated thyroid hormone levels. Upper lid retraction is caused by the muscles in the lids tightening up. Often, when we regain normal levels of hormone, the lid retraction abates. Lid retraction gives us the appearance of eye protrusion even if there is no actual protrusion going on.

Good luck with the replacement hormone.

[Bobbi]

in reply to: How do people cope with the nasty comments and laughter ? #1066155

Well, PTU (the unspellable drug you are on) has a foul taste for many of us, and that might be affecting how you taste other things. Since we typically have to take it three times a day (rather than the standard once a day for methimazole), that might be the culprit.

[Author]

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