[Ellen_B]

in reply to: Methimazole and weight loss #1184516

Hello Mo,
Have you had your thyroid hormone levels tested since you have been on the methimazole? Where are your thyroid hormone levels now?
The thyroid both makes thyroid hormone for the body’s use and stores thyroid hormone. Some of the thyroid hormone the thyroid makes goes into storage. The body must get rid of the stored hormone before the thyroid hormone levels begin to drop. That can take several weeks. Are you experiencing the other symptoms of Graves’ disease? If you are it may mean that your thyroid hormone levels are still above normal.
Maybe your metabolism has been set to losing weight. Does it automatically reset itself to gain weight when your thyroid production slows down?

[Ellen_B]

in reply to: Is it normal to alternate dosage like this? #1184514

Thank you snelsen for sharing your information on the B&B. Since no one else here has mentioned being on B&B regime, it does not seem that many adults if any use it. I also remember too a thyroid specialist saying that there would be no improvement in remission rates for those who switched to Block & Replacement. It is pretty clear then that improved remission rates is not a reason for switching.

[Ellen_B]

in reply to: Is it normal to alternate dosage like this? #1184513

Thank you snelsen for sharing your information on the B&B. Since no one else here has mentioned being on B&B regime, it does not seem that many adults if any use it. I also remember too a thyroid specialist saying that there would be no improvement in remission rates for those who switched to Block & Replacement. It is pretty clear then that improved remission rates is not a reason for switching.

[Ellen_B]

in reply to: Is it normal to alternate dosage like this? #1184512

Thank you snelsen for sharing your information on the B&B. Since no one else here has mentioned being on B&B regime, it does not seem that many adults if any use it. I also remember too a thyroid specialist saying that there would be no improvement in remission rates for those who switched to Block & Replacement. It is pretty clear then that improved remission rates is not a reason for switching.

[Ellen_B]

in reply to: On Week 12 and very discouraged #1184489

You say your eyes are different every day. I have heard those with Graves’ say that extra stress does affect their eyes. Fatigue—which increases at the end of the day makes the eye symptoms worse. There may be some unknown factors to explain why the eyes are worse sometimes and not at other times. Can other individuals with eye problems let us know their experience?

Hypothyroidism should be avoided. Being hypothyroid (especially for any length of time) can cause eye problems that you already have to become worse.
Handling your work, your kids and symptoms all at once are a real challenge. It is good to know that if need be you can take advantage of fmla.

[Ellen_B]

in reply to: Is it normal to alternate dosage like this? #1184507

Hi all,
Has anybody switched over to the Block and Replacement regime (antithyroid drug and replacement thyroid hormone) when the adjustment of antithyroid drugs did not work? If someone has, did it work any better? Are there more problems with the Block and Replacement?

Thank you for sharing your experiences with the adjustment of the antithyroid drugs. I am interested in hearing more. It is amazing to see all the differences. It seems that every one is different to start. I guess one has to keep an open mind to the different possibilities!

[Ellen_B]

in reply to: On Week 12 and very discouraged #1184485

Hello,
I am going to let other people respond to your question about being able to control your weight while on methimazole. I have not been on the medication but I have talked to many people who have been on it and who have complained about weight gain.

On the eyes have you been to an ophthalmologist? The thyroid problem is treated by an endocrinologist—a thyroid specialist. The eyes are treated by an ophthalmologist. You should make sure that you go to one that is familiar with Graves’ disease.

Weakness of the upper arm and upper leg muscles is a common symptom of Graves’ disease. The problem is waiting the time for the thyroid hormone levels to return to normal allowing the muscles to recover and regain their former strength.

[Ellen_B]

in reply to: Newly diagnosed and confused #1184476

Hello,
Today, the success story thread caught my eye.
I saw your name Khadijah next to it as having replied to day.
Then I went to the other post you put up today. It is great to see that you are doing exactly what other posters are asking. Letting others know you have recovered and are doing better.
Perhaps the reason we do not hear back from many Graves’ disease posters is that they have chosen a treatment and after a while (sometimes a considerable amount of time) have recovered and gotten better. It would be wonderful to hear from those who have gotten better. It would help those (the ones who are in the early stages of their treatment and not feeling well yet) to know that it is possible to get better.
Let’s not forget that this is a very important role for the recovered Graves’ patient to play.

[Ellen_B]

in reply to: Haven’t posted in a very long time #1184481

Hello,
You are right that it is the job of the individual to find out what the best treatment is for that individual. The choice of treatment should be made between you yourself and your doctor. Your doctor should and really must respect your choice of treatment if your choice is a reasonable one for you.

[Ellen_B]

in reply to: Just diagnosed and new to Methimazole and scared #1184458

Hello,
I have known and talked to many Graves’ patients over the years. It seems that every one’s Graves’ experience is different. I have heard doctors say that Graves’ goes through active periods or flares. After a flare is done the thyroid quiets down.The length of time of the flares varies from individual to individual. My understanding is that the antithyroid medication does not stop the antibody attack. The antibody levels rise and fall on their own. The reason for taking the antithyroid drug then, is to allow individuals to ride out the flare by keeping their thyroid hormone levels where they belong. The best thing I like about the term flare—is that it can be temporary. Finding out from others how temporary is a temporary is helpful. Listening to others who have successfully ridden out a flare is very hopeful. It is possible to find that out by doing what you are doing– reaching out to others who walked the journey and amazingly enough more than just survived—even done well.

[Ellen_B]

in reply to: What meds in conjunction with IV steroids? And tests? #1184453

snelsen, I did take a look at the giant cell arteritis article on the Mayo Clinic site. The article is very good and confirmed what the gal who was treated for giant cell arteritis told me. It was very easy to locate the article on the site. I won’t forget that the Mayo Clinic is a very good source and will visit it more often.

[Ellen_B]

in reply to: What meds in conjunction with IV steroids? And tests? #1184451

Hello one and all,
It is nice to hear that some individuals do not experience side effects when on steroids. Some individuals for good reasons are very worried about going on steroids. I worked very closely for many years with a Graves’ patient who had to go on steroids for her polymyalgia rheumatica. In her case she wanted to prevent an uncommon complication– giant cell arteritis –an inflammation of the arteries that supply the head. She was not only very worried that the steroids would affect her mentally but also worried about of losing her sight as she had good sight only in one eye. Any way she took the steroids, felt no bad side effects and saved the sight in her good eye.
Choosing a treatment is not easy. Being able to share the information is valuable. I wish you great success with your treatment.

[Ellen_B]

in reply to: Graves disease- can’t find right dosing for methimazole #1184434

Thank you for sharing your thoughts. I have some thoughts too.
Why would adding thyroxine to your methimazole cause your eyes to bulge? Is there some interaction between methimazole and the thyroxine that we do not know about or understand?I would not think so?
Why would the thyroxine cause your eyes to bulge? I have heard that becoming hypo for a certain length of time when on too high a dose of methimazole has been found to result in a worsening of the eye condition. Moreover, I do know that too much thyroid hormone as Graves’ patients have does cause the eye lid retraction—producing the wide open stare. Would that condition increase the condition of the bulging eyes? Does your ophthalmologist have anything to say about what is going on with your eyes?

Not doing well on the methimazole and not being able to do the RAI leaves you with the last choice of surgery. Continuing with the methimazole treatment (not an option for you) means more discomfort.
I have spoken to quite a few individuals experiencing your same regulation problems. You are not alone. Could someone here on forum in a similar situation tell us what she or he did to deal with such a problem?
Please keep us informed in general on how you are progressing. We are eager to hear—as I know you are—some good news—that is your improvement.

[Ellen_B]

in reply to: Third relapse #1183507

Hello,
I have not been on antithyroid drugs so I cannot speak out from my own experience. I will say it does sound like you have a doctor that you are able to call upon when you need him—that is worth a great deal. It also appears he is taking the right measures to get your thyroid problem under control.
Four relapses are a lot to go through! Did a dosage adjustment during the other 3 lapses get you back on track? I have known individuals who have been on antithyroid drugs for a very long time without any problems. Many doctors are now in favor of allowing it so long as you are doing well when on the medication and not experiencing any side effects.
One doctor explained to me the nature of Graves’ disease. Graves’ he said has active periods—or flares. The active period is then often followed by a quieting down period. The reason individuals are on antithyroid drugs is to enable them to ride out a flare– by lowering their thyroid hormone levels. (The medication does not stop the production of antibodies.)
It may not be something you have done to cause the flare. Or if it is, the cause will pass by on its own too.
So let’s hope you are just going through a flare—which will pass and you will feel better again.

[Ellen_B]

in reply to: can’t decide- IV steroids or oral #1184423

Hello,
I remember hearing a thyroid specialist who at the time was attending a support group meeting for Graves’ patients say that many doctors are hesitant about putting patients on steroids because of the side effects. Certain patients he thought should be given an opportunity to do the steroids because they could benefit. Have you been able to ask your doctor (your ophthalmologist) if there are fewer side effects with the injections than with the pills? If there are fewer side effects, which side effects are reduced and which remain?

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