[Ginger]

#1058860

Hello.

I knew my thyroid was having issues, and I figured it was GD based on the weirdness I’ve been experiencing. Wish my suspicions had been wrong, but it is what it is. I just keep telling myself that is better to know it – and deal with it – than to stay in denial. Right?

My problem is that I am so overwhelmed with information (and horror stories), that I am scared to make a decision about which treatment I should use. My doctor said I have two choices: I can take pills every day to suppress my thyroid, or I can go the radiation route. Surgery was never mentioned as an option … I don’t know why.

I was thinking I should just do the radiation therapy and deal with hypothyroidism for the rest of my life, but then I read that some people who choose radiation develop other autoimmune diseases as a result (Lupus, RA, etc.). No idea if that’s true (the Internet being what it is), but it’s a scary thought. Additionally, there seem to be a lot of personal stories out there where radiation was chosen, but the individual had as many, or more, problems with the resulting hypothyroidism than they did with the hyper. Also scary.

My doctor said that I would have to have labs done about every three months if I decided to forgo radiation right now. Obviously that would be a hassle, but would it be worth it? I just don’t know.

I have to schedule an appointment with an endocrinologist, and I’m sure I’ll get more answers to my questions then, but I really value the opinions and advice of others who have had to make this decision for themselves.

Which method do most people choose?

Which is the most successful?

Are the long-term negative experiences the exception rather than the rule with choosing RAI?

What about my eyes? They aren’t what my doctor considered at all bad, but she said they wouldn’t return to normal after treatment. (They protrude a little, some watering, light sensitivity and irritation, but not unbearable at this point.) Some people say their eyes returned to normal. Did yours?

And even if I am able to successfully get my thyroid under control, I will still have to worry that the eye disease aspect of it may get worse? (That’s what I read, but again, it’s the Internet.)

Almost all of the women in my family have thyroid issues (none with GD, though), and their opinion is that it’s nothing I should worry about. Just do the RAI and everything will be fine. I think it’s either that they don’t understand it’s serious, or I am making a bigger deal of this than it is. Is it a big deal for most of us with GD?

I appreciate any advice or suggestions you can offer. Thanks.

[snelsen]

#1170449

Hi Ginger, welcome to this site. The forum is great, and I think you are in the right place to begin learning about Graves’ and TED (thyroid eye disease.)
There are many posts by the facilitators describing the pathway of treatment when we have Graves’, but for now, I will say a few things which might be helpful to you. Of course you are overwhelmed by all this information, especially when it comes from so many different places. I think you will become much more comfortable with all of this stuff, especially when you begin to feel more like yourself. I think better when I am writing when i number thoughts, so here goes!
1. It is definitely the way to go to have an endocrinologist treating you as you learn about Graves’ and the options you have for treatment. In the best situation, you will have an endo who is very familiar with Graves, and with whom you can have a good relationship. You may learn a lot more when you see you endo. Sometimes, endos focus on diabetes, and that is the condition they primarily deal with. When you see you endo, you might consider asking him/her if they have many Graves’ patients in their practice. Or, probably better to have your first appointment, begin to develop a relationship, and weigh your own impressions of the endo, for this is a continuing relationship, and you want to feel comfortable asking questions, and feel good about their knowledge of Graves’. You will be able to figure this out pretty fast, I think.
The common denominator of people on this board is that we want our docs to care, and have knowledge of Graves’.
So, wait until you see your endo.

2. A typical path to getting better, is to decrease the large amount of thyroid hormone circulation in our body, causing all the problems of fast heart rate,
feeling anxious, tremors, thinking you are crazy, and much more.
Here’s a reliable site for you to read, then write again and ask more questions!

http://www.womenshealth.gov/publications/our-publications/fact-sheet/graves-disease.cfm#a

After you read that, it will make sense that the first step is to tell the thyroid to stop overproducing the thyroid hormone that causes our symptoms.
This is usually done by ATD’s (anti thyroid drugs_ and a beta blocker (cardiac drug) if needed to slow our heart rate if we have a fast heart rate. Untreated Graves’ has the potential to be dangerous, but fortunately it is easily managed and you will feel good again.

As you have read, yes, there are treatment options, three of them. Continuing on ATD’s, surgery and RAI (radioactive iodine) All of us choose one of these treatments based on our personal preference, the availability of the treatments. Of course we do listen to the recommendations of the endo.

We are not doctors here, just patients, but I suggest you ask the endo your question about radiation causing other autoimmune conditions. (No, it doesn’t.)
Answers and thoughts to your questions
1-method chosen depends on what you want, where you live, what is available and the advice of your endo
2. Most successful? Not sure there is one answer to that. Depends on #1. After treatment we all get along very well, but we do have Graves’ all of our life.
3. Long term negative effects of RAI exception rather than the rule? Speaking as a patient who reads this forum, I would say they definitely are the exception. Again, it is SUCH a personal decision. I chose surgery, many choose RAI and others chose ATD’s.

4. Eye question. I’d wait until you see your endocrinologist. The one caveat about RAI is eye involvement, and there are some cautions about RAI with active eye involvement. AGain, consultation with the endo AND eye docs is the way to go. Eye involvement does not go away with treatment for Graves’ as your doctor said. It is an entirely different autoimmune process, some people have it, some don’t, some have mild symptoms, like yours, some have more severe symptoms. I do suggest, after you see your endo, that you consider asking for the name of an eye doctor who is familiar with Graves’ thyroid eye disease, have an appt with that doc.

5. eye issues can occur any time, never, and/or many years after you have Graves (my situation.)
6. No, you are not making a big deal of having Graves’, and as you already know, your relatives are not going to be your resource for information for your treatment. However, a family history is relevant, but does not impact treatment. I speculate that some of your family members may have had Graves’, especially if they have had treatment with RAI.

Hey, you will be fine, and we do profit from understanding this thing that we have.
Write again, and I KNOW you will be hearing from our wonderful facilitators and others on the board.
****make the appointment with the endocrinologist, if you have to wait a long time, I suggest you call your primary doctor, ask if you should begin treatment. When diagnosed, it is best to begin treatment.
Shirley

[Ginger]

#1170451

Hi, Shirley.

Many thanks for your time, for answering all of my questions. The information you gave me makes me feel better about this diagnosis. I sincerely appreciate it.

I know I definitely need to see an endocrinologist, but I hadn’t really considered that it should be one who has experience dealing with Graves’. That is excellent advice, and it will certainly come into play when I decide which endo I want to use.

As I mentioned, I think RAI is probably the method I will use (of course, it also depends on what the endo has to say). As of now, my biggest concern with using that course of treatment is the possibility it could make my eyes worse. I’ve been looking around online for statistics – or anything, really – that can tell me what the probability is of that happening. I haven’t found anything yet.

Still, I may be assuming too much right now with the eye disease. I knew I had Graves’ before I was diagnosed, but I am not as certain with my eyes since I have a lot of problems with allergies. Most of the symptoms I am experiencing could be a result of allergies, except for the fact that my eyes definitely stand out more … enough that family members noticed and commented quite some time ago. Additionally, my doctor didn’t say definitively that I had TED, she just said that my eyes weren’t bad. I asked her if I should see an ophthalmologist in the near future … she said no. (Regardless, I will be scheduling an appointment with one after taking care of the thyroid.)

All that being said, I still have more questions about TED. If I am understanding what I have read, TED goes through several phases, and then usually levels out (goes cold?) after two or three years. While I can not be certain right now that I have it, I’m fairly sure I do. The protruding was first noticed two years ago, and the watering, sensitivity, etc., started around last May. As of now, the degree that my eyes stand out appears exactly the same to me as it did two years ago, and though bright lights bother me and my eyes still get watery, red and “gritty” at times, there haven’t been any other changes in about six months. Considering that my eyes started changing two years and that I haven’t noticed any anything else recently, and considering every source I have read says the eye disease runs it course within 1 to 3 years, would it be reasonable for me to think my eyes have reached that leveling point? I understand there is no way to be certain without seeing an eye doctor, I’m just speculating mine must be “done” by now (or close to it) when taking factoring in how long they’ve already been this way.

Lastly, if they are done with those stages of hot and cold, are they really done? Does it ever restart (so to speak)? If I do have TED and I haven’t hit the cold phase, is there no way to at least stop it from getting any worse?

All the thyroid issues in my family are hypo, except for me and my aunt who had RAI. I’ve been wondering what her diagnosis was, but she says she doesn’t know. Sounds weird that someone would go through RAI and still be in the dark about the situation, but she was very sick at that time, and dealing with multiple health problems which were life-threatening. She doesn’t remember everything that was going on, and she doesn’t seem to want to know, so I don’t push it.

I’m glad to hear that RAI doesn’t cause other autoimmune diseases. If you are curious, this is where I got that idea. See paragraph 2 under Risk#2:

http://drerico23.hubpages.com/hub/Radioactive-Iodine-Side-Effects-In-People-With-Graves-Disease

Again, thank you for your response! And your patience.

[Bobbi]

#1170452

I checked out that source you supplied, Ginger, and I have some difficulties with it. I’ll supply a couple of counter-arguments to two of the things I read there.

First: The usual purpose of RAI is to make us hypothyroid. It isn’t a “side effect.” Yes, some doctors will try to give us just enough RAI to make us “euthroid” (i.e. have normal levels of thyroid hormone). It doesn’t work most of the time. By “work” I mean, we either are not given enough to eliminate the hyperthyroid condition and continue with the hyper problems, or we are given too much and we become hypothyroid. It is extremely difficult to find THE dose of RAI that will leave a patient euthroid. So, most of us opt to “ablate” (destroy) the thyroid and go directly to hypothyroid, and be placed on replacement hormone.

Second: ANYBODY with one autoimmune disease (regardless of what it is) is more likely to develop a second autoimmune disease than someone in the normal population. The increase in likelihood isn’t huge, but it is, apparently, statistically significant. So, since you’ve been diagnosed with Graves, you carry that extra, slight possibility even if you choose surgical removal of your thyroid or ATD (antithyroid drugs).

We need to be VERY careful what information sites we use online. Anyone can say anything. Anyone can take a picture that makes them look like a doctor and say anything. A study done a few years ago, found that 80% of “medical” information on the web was wrong, and some of it dangerously so. So, get your major info from “official” sites — the Mayo Clinic for example is a good site for information on TED. That sort of thing.

Second, with boards like ours, keep in mind that the majority of people posting are newly diagnosed, like you. Or people who are suffering complications. People who get well go back to living their lives – they do not spend hours a day on bulletin boards dedicated to sickness. That said, Ski and Kimberly and I have gotten well. We stick around to try to add a bit of perspective. The Graves Foundation insists that support group moderators (whether online or in real groups) be from the pool of individuals who have gotten well again for that very reason.

As for your eyes, and your worries there. Some changes we experience with our eyes have to do with elevated levels of thyroid hormone. These go away once we are returned to normal levels. For instance, the upper eye lids tend to “retract” (pull tight) when we have too much thyroid hormone. This gives the appearance of protuberance, that “Graves stare.” But it isn’t necessarily the eye disease. Typically once we are restored to normal levels, that stare goes away. Thyroid disease also causes chemical changes in the quality of our tears. Normal tears are viscous (gooey might be a good substitute for that bit of medicalese), and sit on the eyeball, lubricating it constantly. But with thyroid disease, our tears become watery, runny, and do not stay on the eyeball lubricating it. As a result, our eyes dry out and the body manufactures MORE tears to try to compensate, but they do not work as well as normal tears did. Since you are experiencing this you need to get some “artificial tears,” available in your grocery store or pharmacy, and make sure to apply them regularly, especially when your eyes feel dry, but more often, if possible. These drops are not the “get the red out” types of drops, nor are they the drops marketed for allergic problems. They are “artificial tears.” Some come in one-dose packets (which seem to be favored by our doctors because they contain no preservatives), others come in multi-dose containers (which are cheaper). Regardless, using the artificial tears will protect your eyes from scratches. Dry eyes do not heal well from scratches. I spent MONTHS once with a scratch on my cornea because I would forget the artificial tears after a couple of weeks and the healing would be put back.

To answer another question you asked — it is not the norm for us to experience multiple “hot” phases of the eye disease. It is theoretically possible, but not likely.

[snelsen]

#1170453

Excellent post, Bobbi.

Ginger, I am so glad you have found the GDATF website. It has been a lifesaver for me, and a marvelous complement to my visits to my endo and my eye doctors.

Probably you already can see the differences among sites on the web. It is very difficult to troll through the web and recognize what is sensational, telling people what that want to hear, the sites that are really selling products, and much more. When we have a new condition, and we want to learn as much as we can about it, in this electronic age, we go to the web.
I read the site you mentioned yesterday. To use Bobbi’s words, I had difficulties with that site also. And to quote Bobbi’s words, which she expressed very nicely and accurately,

“We need to be VERY careful what information sites we use online. Anyone can say anything. Anyone can take a picture that makes them look like a doctor and say anything. A study done a few years ago, found that 80% of “medical” information on the web was wrong, and some of it dangerously so. So, get your major info from “official” sites – the Mayo Clinic for example is a good site for information on TED. That sort of thing.”

This is a good place to develop questions to ask your endo, to hear from others who have the same thing you have, and hear their experiences. Once I found this site, I did not feel so ALONE! I definitely felt that way before I found it. There is so much to learn! And once we begin to understand a little bit about Graves’, we are in the position of trying to explain it to our friends and family. That’s a challenge, too. One thing that has REALLY helped me, is to look back to my life before I had Graves’. Even though I am an RN, and was working in an academic hospital at the time, I had NO IDEA what Graves’ was. All I remembered from my student days studying the endocrine system, was diabetes and some of the more common endocrine diseases.
And that is the position our friends and families are in. They don’t have a clue. So, you are doing a super job of doing research, reaching out, learning every day.

At this point, I don’t want to overload you, but here is a suggestion for your visit to ANY doctor. Ask at the desk for their form that gives them permission to send lab results, and copies of your visit, to your home address, so you can have your own personal medical file. This is extremely useful.
Shirley

[Kimberly]

#1170454

Ginger wrote:

As I mentioned, I think RAI is probably the method I will use (of course, it also depends on what the endo has to say). As of now, my biggest concern with using that course of treatment is the possibility it could make my eyes worse. I’ve been looking around online for statistics – or anything, really – that can tell me what the probability is of that happening. I haven’t found anything yet.

Hello – Here are a couple of studies that looked at the percentages of patients who had a worsening of the eye disease or new development of the eye disease following different treatment options:

Bartlena, et. al. 1998:

RAI: 15%
Anti-Thyroid Drugs: 4%
RAI + Steroids: 0%

Traisk, et. al. 2009:

RAI: 38.7%
Anti-Thyroid Drugs: 21.3%

In the Bartalena study, about 2/3 of those who experienced a worsening later had enough improvement that they did not require further intervention (steroid therapy, eye surgery, etc.). I don’t believe they tracked subsequent improvement in the Traisk study.

Another study (Perros et. al from 2005) concluded that RAI was not a risk factor for patients with “minimally active” eye disease as long as hypothyroidism was prevented with early administration of T4.

The latest guidance from the American Thyroid Association and the American Association of Clinical Endocrinologists states that three treatment options are acceptable in patients with mild eye disease and no risk factors for worsening. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”). The guidance also notes that “…Methimazole or thyroidectomy are…the preferred choice of therapy in patients with active and moderate-to-severe or sight-threatening GO.”

The guidance mentions that a course of steroids may be administered in conjunction with RAI to reduce the risk of eye complications. Steroid therapy obviously comes with both risks and benefits, so this is a decision that you would want to make in conjunction with your doctor.

Take care!

[pnrmd]

#1170455

I offer the following as general information and not as specific advice to any individual. It is best to get your info from an endocrinologist regarding treatment options. Surgery is an option but is not offered as frequently because not as many surgeons are trained to do thyroidectomies as before. If you go this route, you need to ask what the surgeon’s experience is and what his or her complication rate has been. RAI is easy but carries risks for your eyes. Approximately 15% of patients who receive RAI will have an exacerbation of their eye disease, be it proptosis, strabismus or eyelid retraction. It can occur even if you don’t currently have thyroid eye disease prior to treatment. However, if you are pre-treated with prednisone (usually 0.5mg/kg body weight/day) beginning the day before treatment and taper the dose over 3-4 weeks, the risk diminishes to approximately 1%. The greatest risk period for onset of eye disease is between 6-12 weeks after RAI although it can occur anytime. The risk is lower with surgical thyroidectomy but surgery carries it’s own risks. Although your eye doctor said you ‘weren’t too bad’ you need careful monitoring, preferably by an oculoplastic ophthalmologist who specializes in this area. I would not rely on an optometrist to monitor you. Most patients do very well with treatment but the beginning can be rocky. I base this on nearly 25 years as an oculoplastic surgeon with a particular interest in Graves disease.

[Bobbi]

#1170456

After reading the last post, I realize that a comment I made could be misunderstood, Ginger. I do consider my doctors my best source of advice. But when I am researching online, it is necessary to look for official, medical websites like the Mayo one, rather than any general blog or self-help board.

[snelsen]

#1170457

First, I would like thank you for being interested in Graves’. I am writign as a Graves’ patient only, but I have worked in hospitals associated with universities for over 50 years. So the “world” is familiar to me, plus even more familiar since I was married to a physician for over half of that time.
I imagine I will wander a bit in my response, but here goes…..

A couple questions for prnmd.
1. Wouldn’t it be better to have a neuroophthalmologist follow TED? My experience with TED, plus nine (I count each eye as a separate procedure!) surgical procedures by an oculoplastic surgeon, is that treatment of TED, managing TED, including the RX or pred, Solu-Medrol, is an arena the oculoplastic surgeon is not interested in taking on. I suspect you are an exception.
My referral to your specialty was for optic nerve atrophy, for which an OD was done. But the neuro/op doc managed the meds. The oculoplastic surgeon was not a bit interested in that. My strabismus surgery was done by a pediatric opthalmologist. The the remaining ones by oculopastic surgeon.

I do not have the facts and figures on numbers of surgeons and thyroidectomies. Certainly, before RAI existed, more thyroidectomies were done. But the points you mention, to explore the surgeons’ experience and complication rate, have been mentioned numerous times on this board. I further suggest this is information that a person should try to find out with any surgeon for any procedure, whether it is prostatectomy, mastectomy or colon resection. And it is almost impossible to do, I might add. Especially complication rates. This is not readily available information to extract, anywhere in the health care field.

2. I am wondering if you read all the posts in this thread? I think all the responses were 100% appropriate, regarding RAI and TED. And we always say to talk to the docs. It is absolutely true that QUESTIONS for the docs are generated to ask the docs on this site. And it is a darn good thing. And I think we are totally congruent with emphasizing we are fellow patients, and not doctors.
Having said all that, it really IS the choice of a patient on which treatment they want. The problem is getting physicians to listen to the patient, and be balanced with their responses. There are a ton of reasons for a patient to chose surgery, and not want RAI. Planning a pregnancy and concern about eyes, are two really good ones. Another one is the guesswork (albeit carefully considered,) that can result in not enough RAI given, with a repeat RAI necessary in the future. Some of us shudder at the thought of surgery for Graves’. That is valid, too. Then perhaps RAI or ADT’s is the much better choice for them. And, of course, locale and availibility does make a difference.
Time for a cup of coffee

[Kimberly]

#1170458

pnrmd wrote:

It is best to get your info from an endocrinologist regarding treatment options.

Welcome – and thanks for posting! We recognize on this site that we are not doctors and therefore not qualified to give medical advice. We also recognize the fact that we don’t know all of the important facts about an individual’s medical history that could have an impact on treatment choices.

However, we do share our own personal experiences as well as information from credible organizations (AACE, ATA, NIH, Mayo Clinic, etc.) and from published studies in well-established journals.

When it comes to making a treatment decision for hyperthyroidism, our experience is that the more patients do their own research (from credible sources, of course) and the more they feel they are partnering with their endocrinologist in making a decision, the more satisfied with the outcome they tend to be — even if there are some subsequent “bumps in the road”.

All three treatment options have risks — and the patients who don’t find out about these risks until after the fact tend to lose confidence in their providers.

By the way, if you are attending the ASOPRS Spring Symposium, please stop by the Foundation’s booth!

[Ginger]

#1170459

Hello to everyone.

Thank you for the replies. I have read them all, and I appreciate your time and your advice.

I’ve come to the conclusion that I need to stop reading so much about GD, at least right now. I know I really need to try and keep things positive, but I’ve been feeling really depressed the last couple of days. I keep telling myself that it’s not the end of the world, that the diagnosis could have been much worse, but that only goes so far in making me feel better. I’m wondering if I’m expecting too much from myself since I just found out last week. This feels like a “grieving process” because my emotions are all over the place. One minute it’s denial, then it’s anger or something else. It seems to change every other minute. I’m not freaking out, but occasionally I feel like I’m not far from it.

Anyway, I think the best thing for me to do is to stop reading all the miscellaneous crap online about GD. I’m not talking about this forum, just the obsessive behavior of constantly searching for articles and whatnot via Google. And I think I should stop trying to make a decision about which treatment I want to pursue “right this minute” because it seems like a waste of energy and nerves until I’ve seen an endocrinologist.

Otherwise, I still want to come here and ask millions of questions. Feel free to tell me to shut up if I need to hear it.

I don’t have anything else to ask about TED because that’s also a waste of energy and nerves until I get a proper diagnosis from a specialist. By the way, I wasn’t aware that a person’s eyes could also bulge due to a malfunctioning thyroid … I thought you either have TED or don’t, if you know what I mean.

I took your advice, Bobbi, and bought myself some preservative-free eye drops. Genteal. I don’t like them, though, and I’ve only used them a couple of times (my eyes haven’t been bothering me much the last few days). They make my vision blur for several minutes after I use them, and my eyes still feel dry. Additionally, the box says they create a “preservative free environment”, a description which is a little confusing to me. Is that the same thing as actually being without preservatives?

What’s the deal with Tapazole? Works? Doesn’t work? I don’t know if I mentioned this already or not, but I was given prescriptions for a beta blocker and Tapazole. Initially, my doctor said she was going to give me a beta blocker, but she didn’t add the Tapazole until I asked her if there was something I could take to feel better until I made it to a specialist. Then I promptly went home and searched for info on both. Subsequently, I decided I don’t want to take Tapazole, and I haven’t. I called her office the very next day (last Friday) to see if I MUST take it right now, but I’ve yet to hear back (calling them again tomorrow).

I figure I will have to take it whether I like it or not. Seriously, my hair has already gotten thinner, am I going to lose more of it on that drug? I didn’t bother to read anything else on the side effects since that was enough of a drag on its own. (The beta blocker works great, as far as I can tell. I noticed a significant difference in how I felt a few hours after the first dose.)

What about vitamin D? Do I need to be taking supplements or something?

Last question for today: once I get my thyroid under control (whatever method I use), will Graves continue to damage my body? Since Graves is an autoimmune disease and the thyroid dysfunction is only one symptom, does that mean the Graves will still continue doing its thing in other areas? I hope you understand what I mean by that since I’m not sure how to properly phrase it.

[snelsen]

#1170460

Hi Ginger, I’m sleepy tonight, but wanted to answer your post, at least take a first stab at it!

I like your 2nd and 3rd paragraphs! Good decisions.

1. Preservative free eye drops are always in single dose containers. Drops with preservative in them are usually in little bottles with the equivalent of lots of eye drops in them. So, like everything else, Genteal has 4 different kinds of eye drops. Unless you have single dose little plastic things (usually called single use), and the box should say ‘Genteal PF (for preservative free.) you don’t have preservative free eye drops. Probably you don’ thave preservative free. The “preservative free environment” seems to me like deceptive advertising.

2. I remember in prior posts when you said you got only a beta blocker. Somewhere in responses, I think I suggested you ask if there were another medicine she had intended to give you and you should check. Apparently you did, and she prescribed the Tapezole.
OK-That is an anti-thyroid drug (ATD)the generic name is methimazole, and that is the same thing that people on this site are referring to, and most of them are on it when they are first diagnosed. It is ALSO one of the three treatment options that you are not ready to think about yet.
So, rather than writing all again, I have copied and pasted what I wrote in the first post after you joined. I suggest you take a look at that post, then read the reference I mentioned. I think you will begin to see that Tapezole, methimazole, the same ATD, is the essential drug that you should be taking to get your Graves’ under control. As always, check with the next endo you seek, or call the office of the doc who prescribed it, OR (a very good suggestion) go the pharmacy, pick up the medication, and ask the pharmacisit to explain to you what it does.

Following is what is from the first post:

“http://www.womenshealth.gov/publications/our-publications/fact-sheet/graves-disease.cfm#a [womenshealth.gov]

After you read that, it will make sense that the first step is to tell the thyroid to stop overproducing the thyroid hormone that causes our symptoms.
This is usually done by ATD’s (anti thyroid drugs_ and a beta blocker (cardiac drug) if needed to slow our heart rate if we have a fast heart rate. Untreated Graves’ has the potential to be dangerous, but fortunately it is easily managed and you will feel good again.”

My comment to your decision on whether to take the tapezole? I suggest you take it, after you learn why it is so important, and why it has been prescribed.

3. Brief thought about Vitamin D-I live in a place where the sun does not shine much for a lot of the year. For that reason, I do take Vitamin D. This is an easy answer to find, for there is a lab test that tells you if you have enought Vitamin D. Ask to have it done. Lots of other people take lots of vitamins and supplements, Graves’ or no Graves’, but I am of the school that I eat well and get them that way.

4. Last question. Will Graves’ continue to damage you body after it is under control and you have your treatment. No, it won’t, provided you follow whatever plan you have chosen.
If however, someone decides to stop taking their thyroid supplement, or stops taking their ADT, they will be in doo-doo pretty fast and be sick again. We will always have Graves’ but it won’t always rule out lives. But it is part of our lives in that we can’t decide to stop taking medication if it is prescribed.
4.1. The definition of Graves’ as an autoimmune disorder or disease is that it impacts the thyroid gland. But not other glands or organs. Equivalent thoughts are diabetes+pancreas, Crohns=bowel,thyroid eye disease+eyes and eye muscles.

Ok, that’s it for tonight! Have a good sleep. When is your next appointment,Did you make it? I hope.

[Kimberly]

#1170461

Hello – A couple of notes to add to Shirley’s great info…

Autoimmune thyroid disease can potentially be associated with low Vitamin D, but excessive levels can be dangerous. Before starting on Vitamin D supplements, have your levels checked via a blood test and if needed, work with your doctor to determine an appropriate level of supplementation.

At our Boston conference last year, one eye doc mentioned that the “preservative-free in the eye” drops were acceptable. Apparently, there is a preservative chemical that breaks down when it is exposed to air. (I’m not smart enough to understand the process!) You definitely do NOT want the “get the red out” kind of drops. Keep in mind that the stronger the drops (i.e. designed for “moderate” or “severe” versus “mild”, the longer you will deal with initial blurriness. I reserve the severe gels for right before bedtime.

Graves’ can affect the thyroid, the cells and tissues behind the eyes, and more rarely, the skin on the front of the shin. These issues can occur independently — for example, you can potentially have eye issues, even though your thyroid hormone levels are in balance.

Hair loss typically happens when our thyroid hormone levels are in the process of swinging higher or lower. Once you get to normal and stable levels, you should see this problem correct itself.

Take care!

[weewuu]

#1170462

Great stuff Bobbi, for everyone.

[weewuu]

#1170463

Great stuff Bobbi, for everyone.

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