[Bobbi]

in reply to: New for forum, diagnosed with Graves and Hyperactive thyroid #1171569

Please don’t put off treatment for long. It is not in your best interests.

I had RAI, and my mother had RAI for Graves. The treatment gave us both back our health. If you have specific questions, I’d be happy to try to answer them.

[Bobbi]

in reply to: Started PTU but levels still increasing? #1171561

The beta blocker is not known to act on thyroid levels — it just helps to mask some of the symptoms, and to provide a bit of protection for the heart from the effects of too much thyroid hormone.

[Bobbi]

in reply to: Methimazole & Symptoms #1171556

Our antibody levels can change for no well-understood reason. While we are on antithyroid meds those antibody level changes can alter the amount of the drug that is required to keep our thyroid levels normal. So, we can go hypo while on those drugs and we can return to hyper while on those drugs. If you are concerned about persistant symptoms you probably should consult with your doctor.

Thyroid storm is associated with untreated or inadequately treated hyperthyroidism. So I suppose it would be possible to experience it if the amount of ATD being taken was not big enough — or if the patient was forgetting doses frequently, or something like that. Having it occur post diagnosis, while on ATDs isn’t something I remember seeing on the board, though.

[Bobbi]

in reply to: first steps for eyes #1171531

Some — a few– of us have to use those drops three or four times an hour. The key is keeping the eyes lubricated and not feeling gritty.

[Bobbi]

in reply to: first steps for eyes #1171529

If your eyes are dry and red, you should probably be using eye drops. But not the “get the red out” type of drops. We need artificial tears. The quality of our tears changes when we have thyroid disease, making them lubricate our eyes less well than normal tears. We often notice a lot MORE tears than normal at odd times. Ironically, this abundance of tearing activity is an indication that our eyes are too dry. It cannot hurt for you to use artificial tears — preservative free formula– in the days that you wait for the visit with the opthamologist. And we are recommended to use the preservative free type, in single dose packets, because the preservatives can cause irritation or allergic reaction.

[Bobbi]

in reply to: 7 years post RAI and suddenly very high TSH #1171242

Is it possible for thyroid tissue to remain after RAI? Yes. It depends upon the dose given, the purpose of the dose (euthroid or ablation) and its effectiveness.

[Bobbi]

in reply to: Latest Test Results need expert help:) #1171295

First of all, it is not opinion that vitamins and herbs will not affect the course of the Graves. They have not ever been shown to be effective at controlling thyroid hormone levels. And it is the control over thyroid hormone levels that is important. In the days when patients only had the options of herbal medications, a huge percentage of hyperthyroid people died. The ones that survived were not necessarily healthy, either. Hyperthyroidism — no matter what the cause — needs to be effectively treated. Taking vitamins and herbs IN ADDITION to an effective treatment option is typically fine, but needs to be done with the doctor’s knowledge.

The only methods that have been demonstrated, over time, in all patients, to control thyroid hormone levels is antithyroid drugs or removal of the thyroid via RAI or thyroidectomy. If for some reason you cannot tolerate the antithyroid drugs, then your only options are to remove the thyroid. People can live long and healthy lives without their thyroids.

We cannot interpret your test results for you. Your doctor does that. If you are questioning your doctor’s expert opinion, you really should find another equally qualified doctor to look at your labs and give you a second opinion. And, different labs do not necessarily have the same range of normal, so you need to have your own labs in front of the doctor, not just the numbers you posted here. The lab report will also include the range of normal.

[Bobbi]

in reply to: A different adverse effect of Methimazole? #1171516

Hi, Tammy:

I have not heard of this particular problem. Sorry.

[Bobbi]

in reply to: Diagnosed Tuesday… Where to go from here… #1171503

A word of warning. We are not doctors, so take any medical “advice” as suspicious. Beta blockers are NOT universally prescribed because not all patients can safely take them. They can be helpful with alleviating symptoms (tremors, for example), and they help to protect the heart, so they can be useful in patients who can safely take them. But you, dressagehughie, need to discuss with your own doctor whether or not it is a good idea.

I would suggest you read the article Kimberly posted on treatment options (at the top of the bulletin board’s first page).

I would also suggest that you try to find (in a library/bookstore) any book recommended by GDATF, and use links provided by GDATF for web research. There is a whole lot of bogus medical information on the web. Our organization tries to provide links to sites with good information.

One thing to keep in mind, because I know right now you must be feeling overwhelmed….in shock even: Our treatment options typically do work to give us back our health. So take a deep breath and try to relax. And, yes, talk with your GP about any medications you might be able to take until you get to your endo appointment.

[Bobbi]

in reply to: Long term Methamazole use? #1171472

Early in the days of this board there were a lot of conversations about this topic, Harpy. Our doctors tend not to be comfortable with decades-long use of ATDs (especially larger-sized daily doses) unless there is an underlying medical reason why the patient cannot tolerate surgery or RAI. I know of no data base or other study which would indicate the prevalence, to answer your question.

[Bobbi]

in reply to: The Shakes #1171362

Gina: You are currently “choosing” the most dangerous option: doing nothing. By doing nothing you continue to be hyperthyroid. None of our treatment options are as dangerous to our health as remaining hyperthyroid.

We all know how difficult this decision is. I am sending you hugs. But PLEASE do not put this decision off any longer. The best thing that happened to you was getting a diagnosis. You have the ability to get well again by choosing a treatment option because our treatments work.

[Bobbi]

in reply to: Finally good numbers after 5+ years treatment #1170879

What is known — to date — about antibodies is that they are tissue/protein/cell specific. I’m not a scientist so I am using lay terminology here. Antibodies to H1N1 will not keep someone from developing measles. Antibodies to measles will not keep someone from developing the flu. Antibodies which affect the myalin sheath do not cause the thyroid to overproduce hormone. Antithyroid antibodies do not attack the heart causing it to race. They attack the thyroid cells, causing them to over produce hormone, which in turn causes the heart to race.

Think of it this way, perhaps. I have a bad knee — old age creeping in. As a result, I also have back pain….from limping, from favoring the knee which in turn has thrown off the alignment of my back. I don’t need back surgery to fix that pain. I do, possibly, need knee surgery. (But I choose not to entertain that notion at the moment…) A lot of parts of the body are inter-related and respond to malfunction in another part. So, aberrant thyroid behavior does affect other body parts. But the “cure” for those other body parts is to fix the thyroid behavior.

But, other than curiosity, Harpy, what is the point of conjecture that an “actual” cause lies below the antibodies? What we have is an illness that requires effective treatment now. And effective treatment in the here and now requires that we focus on the thyroid problem,and shut down the overproduction of hormone in whatever way works best for the individual.

[Bobbi]

in reply to: First Appointment with Oculofacial Surgeon #1171410

I cannot make any constructive comments, gatorgirly, but I am “replying” because I think your post needs to come back to the top of the list.

It does sound like you have a good list of questions to ask. And I do wish you very good luck.

[Bobbi]

in reply to: Mild TED to normal? #1170645

Blurry vision also can come when the eye muscles are ever so slightly out of synch. We need those muscles to work perfectly together to provide single vision. If they do not, blurring can occur, or, the more common doubling.

[Bobbi]

in reply to: Complications of Surgery #1171423

When we are being advised of the possible complications of a medical intervention, any possibility — even of the remote kind — is included in the discussion. I have read recently (on a reputable site) that there are a couple of nerves that run through the thyroid, working the vocal chords (cords?), and that if BOTH are cut during thyroidectomy, then a trach tube becomes necessary. That was the first I’ve heard of it. It is, most definitely, not something that happens with any frequency, especially with a well-qualified surgeon who does lots of thyroid surgeries. Nevertheless, it is, apparently, a possibility, however remote.

[Author]

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