[bijou]

#1017997

Good evening All,

I’ve just been diagnosed with Graves a few days ago. And while I knew that I would eventually have thyroid issues, as it runs in my family (mother, grandmother, great-grandmother); this has caught me off guard.

The symptoms that finally brought me in for a check-up:
-extreme fatigue (Question: did anyone else feel like their body was shutting down [so tired almost comatose] after eating?)
-in between period bleeding (switched contraceptives twice before realizing that wasn’t the problem)
-carpal tunnel feeling (though, do work at a computer all day)
-hair (my poor hair!) breaking, dry, falling out, etc.

I also have a heart murmur that is affected by the hyper. So, palpitations, slight and infrequent chest pain, shortness of breath, etc.

The point of my post is to see what everyone recommends; that is, which is the most effective treatment option? (I listed my symptoms to see if anyone could relate. Can anyone?) I’ve been told my choices are:

Pills—(forgot the name, offhand) the pills require frequent lab work (liver, bone marrow) and suppress the immune system, leaving you susceptible to infection. Also, I’ve been told it has a high failure rate and if I decide I want to conceive (27 y/o) it would take 2 to 3 years, and involve ceasing the pills causing me to go back to hyper, etc.

RAI—the most recommended by doctor, effects weren’t really described other than would kill my thyroid and make me hypo, which is easier to "fix."

Surgery—effects same as RAI, except removing my thyroid. Risks involve ruining voicebox and general risks with surgery.

I desperately want to feel better, but I have a lot of trepidation about the permanence, or foreverness, of killing/removing my thyroid and being on pills for the rest of my life. However, I don’t want to do tons of lab work and have a false hope about taking pills.

Is killing the thyroid and life-long pills inevitable? My doctor recommend RAI and seemed blaze about the whole thing, which is unnerving. What if they find a treatment later on and I can’t participate because I’ve killed the thyroid?

All in all, I’m curious about how you all chose the option that you chose and if you feel/know it helped. (And were you anxious about it all, too?)

Thanks much!

[Kimberly]

#1062102

Hello and welcome to the boards!

This is a question that we’ve all had to sort through. I would suggest doing a search on this site for “Anti-Thyroid Drugs”, “Surgery”, and “RAI”. You will find stories from members of this board who have selected each of the three options, for various reasons.

A good old-fashioned “pro” and “con” list can help you work through the choices and determine which treatment option is right for you. A few comments…

I have been on Anti-Thyroid Drugs for 3 ½ years. While it’s true that the failure rate is high when the meds are withdrawn after 1-2 years, more docs are supporting longer-term use of these drugs in patients who are able to maintain stable levels on a low dose – as long as they can avoid liver and WBC issues. There is some anecdotal evidence that testing antibodies prior to withdrawing the drugs — and that weaning off the drugs slowly — may have some benefit. I’ve had a couple of scares with my WBC count dipping just below “normal”. However, I’ve actually had fewer colds in the last 3 years or so (knock on wood), which I suspect is because I’m extra, extra cautious now about washing my hands and trying not to touch common surfaces in public places. The WBC and liver issues are fairly rare and usually occur within 90 days of starting the meds. These issues *usually* can be reversed by stopping the meds. However, either of these side effects can be very serious, so this is certainly not a decision to be taken lightly.

There are two anti-thyroid drugs: Tapazole (or the generic Methimazole) and PTU. Methimazole has a better track record than PTU in terms of liver complications, but it increases the risk of two specific birth defects during the first trimester of pregnancy. For women who wish to conceive while on ATDs, it’s pretty common for them to start with PTU and then switch to Methimazole during the second trimester. I’ve never heard of having to stop taking meds to conceive! In fact, it is dangerous for both mother and baby if the mother is hyperthyroid. I’ve also never heard of a 2-3 year time frame for conception, although being hypER *or* hypO can make it more difficult to conceive, so perhaps that is what your doctor was referring to. Also, if you are looking to conceive, most docs will recommend waiting at least six months (some say up to a year) to conceive following RAI.

Keep in mind that it can take some time to find the right dose of replacement hormone following RAI or surgery. Once you are hypO (which happens immediately after surgery, but can take weeks or months after RAI) your doc will make an estimate as to the level of replacement hormone you need. Then you need to wait several weeks in between labs to see if the dose needs to be adjusted. Some patients have to go through several iterations of this process before finding that “sweet spot” of replacement hormone that will keep them feeling good. I think that many docs neglect to mention that it takes time to find the correct doseage of replacement hormone after TT or RAI – instead, they make these treatment approaches sound like quick fixes.

Also, there is some controversy over the link between RAI and Thyroid Eye Disease. Some studies have shown around a 15% increase in worsening of TED symptoms in patients who choose RAI versus other treatment options. Keep in mind that patients can develop eye disease no matter which treatment option they choose (although smokers tend to have the worst outcomes), but this is certainly something to keep in mind.

Bottom line, it’s important to do your research and make an informed decision. Once you select a treatment and get your thyroid levels stabilized, you *will* return to good health!

[snelsen]

#1062103

Hi, I am writing to tag on to Kimberly’s great comments. The method that is better, is the one you choose. We all make our decisions for our own personal reasons. These reasons can be based on fear, thoughtful weighing of pros and cons, pregnancy plans, and simply "I don’t want that and that, so I will have this!" I chose surgery. Variables to consider with surgery for me was finding a surgeon who routinely did this procedure. Both RAI and ATD’s are treatments I did not particularly want. For me, surgery seemed the quickest way to get back to normal, get on the right thyroid dose, with fewer variables involved (for me.) Other people don’t want a thyroidectomy as much as I did want it! So you see how it goes. Perhaps you feel so strongly about not detroying your thyroid with RAI or surgery, that ends up being YOUR personal reason for choosing ADT’s. As Kimberly said, pregnancy can be managed with ADT’s.

But there a few definite "givens" that go along with Graves’.
You will have labs the rest of your life, and you will take meds the rest of your life if you have any of the choices you mentioned. And you will have Graves’ for the rest of your life. Fortunately, it can be treated, it can be managed, but it can’t be cured.

YOu did not say in you post, but I am wondering if you have been put on some ATD’s and maybe a beta blocker (for your heart rate) already when diagnosed.

For your information, please confirm with your doctor that your heart murmur is related to your cardiac symptoms. As you have probably been told in the past, many people are told they have a murmur, but generally they are not relevant or harmful. It’s good for you to understand the relevance of yours. But the palpitations, fast heart rate, some chest discomfort, etc etc are typical of hyperthyroidism. There lots of good references for you to read about Graves’ on the home page of this site.
Shirley

[bijou]

#1062104

Thanks for the replies. There is a lot of information to take in. Slowly but surely. ” title=”Smile” />

[Bobbi]

#1062105

I have just one comment to add. There can be medical reasons why one individual patient should avoid one or more of our treatment options. Usually, we are given a choice — at least at first. But not always. As much as possible, you need to listen carefully when your doctor makes recommendations. Ask follow up questions. In fact, it is sometimes best to take a friend or family member with you to the consultation with the doctor. When someone is ill, it is difficult for them to take in all of the information at one sitting. We forget things; we forget to ask follow-up questions when we don’t quite understand. The process can be overwhelming. So having someone there with us, to listen and take notes can be very helpful.

Wishing you good luck and good health soon.

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