[LynneB54 October 31, 2008 at 4:55 pm Post count: 32]

#1075654

Hi Ski,

Thank you for the good information; I will see about buying a book this weekend to see what more I can learn. In the meanwhile – the endo I saw kept insisting that I could not have Graves’ because my eyes weren’t bulging. He repeated it three times. Well – he’s the doctor, but I’d read that bulging eyes were a symptom that not everyone has. He was adament that meant no Graves’. My scan states that my 24 hour uptake was 37%; I have no idea what that means. It also said there were no nodules. So – don’t know how the endo made the diagnosis he did. (I didn’t have a copy of the scan until after the visit was over or I would have asked him that question). Anyway – we didn’t click so I think I’ll stick with my family doc. I will certainly ask for the antibody test; he’ll probably want to do blood work again anyway.

Blood results in Sept show my T4 at 12 and my T3 at 33. My TSH was at .004. What does any of that mean? I know the TSH is low, but the T3 and T4 seem to be in the normal range. Guess I need to get the family doc to tell me. The endo didn’t seem to feel that any of it was very significant. So – if I’m not very sick then why the treatment with RAI – which seems to be a very serious treatment?

One last question about exercise. I sure don’t feel like doing much, but I do enjoy walking my dogs. I normally walk several miles a day, although I can’t go nearly as far anymore because I get winded and my legs hurt. I read in some of the posts that exercise wasn’t good at this point, but I didn’t really understand why. I would think it would help muscle mass from being lost, as well as providing the other benefits of walking. So what do I need to ask the doctor next week about exercise?

Again – thank you sooo much for the input. It really is so nice to have a place to ask questions where people have been through this before.

Happy Halloween,
Lynne

[Ski October 31, 2008 at 5:39 pm Post count: 1569]

#1075655

Hi again Lynne,

It is rather mystifying to hear that a doctor would proclaim "no Graves" because your eyes are not bulging. Perhaps it’s a matter of semantics. Some doctors only use the term Graves’ Disease to refer to the eye disease, when actually that is just one symptom group in the "syndrome" of Graves’ (syndrome being the newest way to refer to Graves’). You’re right, not everyone who has Graves’ Thyroid Disease has the eye disease symptoms (we typically refer to it as Thyroid Eye Disease, because it can be connected to at least one other thyroid disease, Hashimoto’s), so that should not rule out Graves’. If you feel comfortable with your family doc, there’s a high probability you can be successfully treated with him. You may have to learn together, with some of the details, but a doctor who is willing to learn is a treasure.

We aren’t allowed to judge your test results, for many reasons. Different labs have different "normal" numbers, and different countries use different measures, so it’s impossible for us to know exactly what’s up with your tests. If you have a copy of the test results, you should be able to see whether your T4 and T3 actually do fall within the normal range at your lab. The TSH seems suppressed, that’s a very low number for any lab. Basically, T4 is thyroid hormone in your bloodstream, T3 is the active thyroid hormone (your body makes it from the T4 when needed), and TSH is Thyroid Stimulating Hormone, sent from the pituitary gland in response to the thyroid hormone levels it perceives. If the TSH is very very low, it senses too much thyroid hormone in your bloodstream and is trying NOT to stimulate the thyroid to release any more. If the TSH is very very high, it senses too little thyroid hormone in your bloodstream and it is trying to tell your thyroid to release lots more. Think of them like a teeter-totter, if one is high the other ought to be low.

As for an initial RAI recommendation for a person who does not feel very sick and has few symptoms, good instincts on your part!! There’s no reason you shouldn’t be able to use meds to bring your levels into the normal range and then look more closely at what’s going on.

As far as exercise goes, I’m not up on the technical terms, but our muscles are constantly being torn down and rebuilt, that’s what makes the strength. When we are hyperthyroid, the tearing down is accelerated, and the rebuilding is suppressed, so when we exercise vigorously, we accelerate even further the tearing down, and since the rebuilding is suppressed, we just lose MORE muscle mass than if we were not exercising. In addition, our heart is a muscle, so exercise would do the same thing to the heart, which could be truly dangerous.

Just ask your doctor what they would recommend in terms of exercise. Typically, while hyperthyroid, almost everything is discouraged. You can do gentle stretches to keep muscle tone, but you don’t want to risk more damage. Your body is working VERY hard, being hyperthyroid. It’s like putting a brick on the gas pedal in your car. You can probably still walk the dogs, but you might need to shorten the walks a bit.

It’s a good idea to get a book ~ we have some recommended books on the main website, they are full of terrific, basic info.

Keep asking questions! ” title=”Very Happy” />

[LynneB54 October 31, 2008 at 6:08 pm Post count: 32]

#1075656

Hi Ski,

Thanks for the terrific information. It is helpful!

One clarification – when I said I wasn’t very sick, that’s the impression I got from the endo; certainly not how I feel! I’m feel worse now than when the tests were done. Today’s a good day, but yesterday was awful – and so it goes. I’m grateful for the good days and try not to get too discouraged with the bad ones.

As far as the meds go – basically I’ve been discouraged by the docs from trying them. I’ve been told they just mask symptoms and have serious side effects like liver failure, suppressed white blood count, etc. etc. If they’re pretty rare, that’s what I’d like to try since the RAI is permanent. From what I gather the meds put people in remission but it doesn’t always last, and then the only option (other than surgery) is RAI. Decisions, decisions…

Take care,
Lynne

[Ski October 31, 2008 at 6:39 pm Post count: 1569]

#1020013

Hi Lynne!

Your message is pasted below (for those who did not see it under the announcements).

First, we’d LOVE it if every endocrinologist referred their Graves’ patients to our website & bulletin board immediately upon diagnosis (everyone who has an endo, please mention it to your doctor!). Information is key, and endocrinologists are SO busy…

Okay, as for hyperthyroidism vs. Graves. First ~ Graves is the most common reason behind hyperthyroidism. Second, I was told that a scan reading "toxic multinodular goiter" IS a diagnosis for Graves’. I think you may want to clarify with all of your doctors. If there is truly a question in any of your doctor’s minds (or yours), there is a blood test for the antibodies. It’s POSSIBLE for that test to come out negative even though you have Graves’, because the antibody levels rise and fall for reasons no one understands, but if you get a positive result, that’s solid news. Still, as I said, a very high percentage of hyperthyroidism comes from Graves’.

Now, as for "guaranteed" hypothyroidism. That is true. No matter what you do, the antibodies are killing your thyroid, and eventually it will die, and that will make you hypothyroid. HOWEVER, with proper levels of replacement thyroid hormone, you will not be hypothyroid forever, so weight issues, lethargy, all should get better as your thyroid hormone levels normalize.

Your doctors may prefer RAI (most do), but all three treatment options are valid. Each have their own pros and cons, and I find that patients have a much easier time with treatment and future issues when they’ve got a solid grasp on what’s going on, what the options are, and what they’re comfortable with. Personally, I did choose RAI, and it worked well for me. Each of us has our own biases, and we should not ignore them just because a doctor tells us "no big deal." Do your research in reputable places (the internet can be absolutely rife with craziness, make sure any site you look at is adhering to some medical standards), and take your time. Many people use the meds in order to find normal levels, then they can more easily think through the whole scenario. Do what you feel is best for you, that is so important.

~Ski
GDF Assistant Online Facilitator

from Lynne:

I just found this website and I can’t tell you how pleased I am. Why don’t docs tell patients about it?? I have lots of questions and haven’t been sure where to turn. Maybe someone can anwser some of my questions:

I went to my family doc and he did blood work and then a thyroid scan. I definately have hyperthyroidism; the family doc said I had Graves’ Disease. He sent me to an Endo who said, no – I have Toxic Multinoduler Goiter. My scan says there are no nodules, so how can that be?? I talked to a radiologist friend, who said that was wrong, and I have Graves. Now what?? Think I’d rather go back to my family doc who has seem me for 26 years.

I’ve been told that no matter what – I’m going to end up hypothroid. Doesn’t matter if I let it burn itself out (can’t feel this bad for much longer…)or take pills (which I’ve been told are only a bandaid to make me feel better but doesn’t solve the problem) or the RAI. All the docs I’ve seen feel the RAI is no big deal and that’s the only reasonable option; is that right?

Since Dec 06 I’ve made a concerted effort to lose weight – no sweets, smaller portions, more exercise, etc. I’ve lost 40 pounds; it wasn’t easy. The Endo said "I had help" because of the hyperthyroidism, but the scan report said I’m in the early stages. That bothers me because it seems that even with the diet changes, when I’m hypo it won’t matter what I do – I’m going to gain weight. The Endo said no, just follow my changed diet. Well – what’s right?

I’d appreciate any help. I’m in the early stages of this thing and don’t know what to expect. It just can’t be as easy as the docs make it seem.

Thanks!!!

[cathycnm October 31, 2008 at 7:52 pm Post count: 284]

#1075657

Lynn- My understanding of multinodular goiter is that the thyroid actually increases its # of follicles in response to INCREASED TSH in response to some external need for more thyroid – such as adolescence or pregnancy. (Hense the term "multinodular" – in actuality that refers to the folicules and not actual nodules, though some folks do eventually develop nodules from the follicles). The follicles generally go back to normal once the external need goes away – but sometimes there is permanent change. Toxic multinodular goiter is hyperthyroidism (or thyroid crisis) caused by the increased thyroid hormone produced if the level gets too high. And, it is true, it does not come with eye symptoms. I am actually quoting a current reference book on this (Pathophysiology by McCance and Heuther). From what I can tell – the main difference between Graves and toxic multinodular goiter is that in Graves the TSH is low because the thyroid can no longer respond normally to the TSH. In multinodular goiter, the TSH is high in response to an actual need for more thyroid hormone. Not sure it that helps but thought I would throw it out there.

[Ski October 31, 2008 at 9:20 pm Post count: 1569]

#1075658

Hi again Lynne,

It is true that the ATDs have a relatively low rate of success for the first try at remission, and after one success, if GD raises its ugly head again, the chances are even slimmer for a second remission. HOWEVER, any percentage above zero indicates that it is successful for someone. If you’re that someone, well then it worked 100% for you, didn’t it? The possibility of liver damage does exist, but from what I understand, if it’s going to occur in its worst form, it will happen right away, so patients are usually checked early on in the process for liver enzymes, and you would have to stop taking the meds if they were damaging your liver. (There is a second argument for liver damage when they are taken long term — for years and years — because our livers have less capacity to process foreign substances as we age, plus of course there’s a cumulative effect from taking it for years and years. That’s different.) The lowered white blood cell count is also a possibility, and it can be rather frightening if it does occur. I’ve seen doctors who were completely scared off of using them at all from seeing a patient with that particular side effect. It does give a warning sign (high fever, sore throat), and if you are tested quickly and the effect is discovered, you can easily reverse the condition by discontinuing the med. Those are definitely concerns, however they are yours to evaluate for yourself. The real difficulty is that, while you are hyperthyroid, everything speeds up ~ it’s hard to concentrate, it’s hard to evaluate ~ so the meds can be used to bring your thyroid hormone levels into the normal range so you can begin to heal your body and clear your head. The ATDs actually DO reduce thyroid hormone levels. It can be a moving target, since the antibodies rise & fall for no good reason, and that will affect your thyroid hormone production. Beta blockers are used only to mask symptoms, and to protect your heart during the most difficult times.

Still, the bottom line is that your thyroid will fail early from Graves’, so you need to come to grips with the fact that you will likely, at some point, need to take thyroid hormone replacement. It’s kind of your choice as to when, and how. Fluctuating levels are just as damaging as continuous high or low levels, so you could continue your symptoms much longer than necessary, if you’re always chasing that number rather than simply getting to it. And, to be fair, some people who just decide to be "done with it" and have RAI or surgery still have trouble finding their normal level. The one constant about Graves’ is that it is never "one size fits all," to quote our medical advisor. So, almost more important than your choice of treatment is your choice of physician. You need someone who will help you with your treatment, not decide for you what should happen next.

I am sorry you’re feeling badly ~ your attitude is a good one, that will help!

[LynneB54 November 3, 2008 at 6:02 pm Post count: 32]

#1075659

Hi Ski and Cathycnm,

I just posted a reply to your responses the other day, and when I hit submit, it all disappeared. Drats! Anyway – thank you both for your help.

Cathycnm – I’m a little confused after reading your post. If my TSH is so low, wonder why the endo thought I had TMNG? Seems that my TSH would be high in that case. But if the TSH is high, how can a person have hyperthyroidism? I’m confused about the whole thing. Also – the scan showed no nodules so I wonder about the diagnosis of TMNG; I’d think some nodules would have to be present.

Ski – I took your advice and got a book; I bought ‘The Complete Thyroid Bood’. I know it must be good because the author is the Director of the University of Kentucky Thyroid Clinic. I’m a UK grad so anything from there must be good! ” title=”Smile” /> ” title=”Smile” /> Anyway, I find it to have a wealth of information. I think it will be a good reference to have through all of this.

Finally – I haven’t heard anyone mention nausea as a symptom of this. I have a constant low level that doesn’t interfer with appetite but it’s annoying. The doc proscribed Asaphex (spelling??) and that has helped.

Again – thanks for the answers. It is so wonderful to have a site to go to for answers and reassurance.

Lynne

[cathycnm November 3, 2008 at 9:15 pm Post count: 284]

#1075660

Lynn – Did not mean to confuse you – this endocrine stuff is pretty amazing with that. The follicles ( similar to the follicles our ovaries make under the stimulation of ovarian hormones) are what are present in TMNG (the "nodules"). In multinodular goiter, the TSH is high is response to body need but if it goes on too long, it can cause an actual nodule that might produce thyroid hormone and TSH may drop. With Graves, TSH is low because the autoimmune response means thyroid hormone is made without the need for TSH to stimulate it. I wish you the best – it sounds like a confusing situation. I hope you will let us know what you find out! Cathy

[LynneB54 November 4, 2008 at 10:35 am Post count: 32]

#1075661

Hi Cathy,

Thanks for the explanation – I understand better now. Maybe that explains what the endo meant when he said that Graves is caused by antibodies attacking the thyroid and TMNG is caused by a cellular response. I still don’t understand how he came to that conclusion so quickly; he didn’t explain other than to say that the 24 hour uptake on the scan has to be in the 70% range for Graves and my eyes aren’t bulging, so I couldn’t have Graves. My radiologist friend says that’s not the case, and I do. I’m anxious to see what my family doc says on Thursday; he’d originally said I have Graves as well and that’s why he sent me to the endo. I didn’t think getting a definitive answer would be difficult, although I should have known better. My daughter has Crohn’s and arthritis and it took several years to get her diagnosed.

And by the way – the endo never asked about any eye symptoms, but mine are becoming increasingly dry. If I wake up at night I can barely open them and it is painful when I try. I can’t wear my contacts overnight anymore, and have to take them out in the evening. Eye drops help some.

Thanks again,
Lynne

[Ski November 4, 2008 at 12:11 pm Post count: 1569]

#1075662

Hi Lynne,

Sorry to hear about your eye symptoms ~ ask your family doctor for a referral to a good ophthalmologist. More than likely, the treatment will be "wait and see," but it’s good to get a baseline and have someone tracking your progress, just in case. Since you say you have trouble in the middle of the night, I feel that I should ask ~ are you sure your eyes are closing completely when you sleep? If not, that can cause serious damage. There are things you can do to cover your eyes during sleep, and the ophthalmologist can help you through that as well. In addition, there is an overnight eye gel you can use to give your eyes a good dose of moisture while you sleep. It’s tough to see through, so you want to make that the very last thing you do before bed, but the eye dryness can lead to corneal damage, which is irreversible and can risk your eyesight, so it’s critical to handle the dryness effectively.

I hope you get to the root of your thyroid issue soon ~ it’s so frustrating not knowing!

[LynneB54 November 4, 2008 at 12:52 pm Post count: 32]

#1075663

Hi Ski,

Thanks for the quick response. Coincidently – I saw my optometrist in mid August for a routine check up because I felt my vision wasn’t as good as it should be. She said everything looked good, but prescribed OTC eye drops for dryness. As I said, those have helped. This visit was just prior to learning I had thyroid problems. So it was lucky I went; now I have a recent visit to compare to if I start having other problems.

Why wouldn’t my eyes be closing all the way at night? How would I know? I’ll ask about the eye gel you mentioned; the optometrist is a friend.

The doctors seem to treat this as a simple disease that’s easily treated and managed but it’s apparent from what I’m going through as well as the others on this board that isn’t the case. I do appreciate the help from here so much; it is such a valuable resource.

Thanks again,
Lynne

[Ski November 4, 2008 at 2:28 pm Post count: 1569]

#1075664

Hi again Lynne,

These are good questions ~ you know, until you’ve got a confirmation that this is Graves’, it’s kind of hard to say, but if the eye symptoms you are experiencing are related to Thyroid Eye Disease (the eye disease that comes along with Graves’ thyroid disease), then you really need an opthalmologist (rather than an optometrist). It’s important that you see someone with the necessary training to deal with this, so you may want to make some phone calls to make sure you are seeing someone with experience treating TED specifically.

Some patients have bulging eyes, and if they come out far enough, sometimes the eyelids won’t close all the way, or they’ll "creep up" when you’re sleeping. The numbers vary, depending on the amount of bulging, the size of your eyelids to begin with, etc. If you don’t live with anyone who can check while you sleep, then the one test I’ve heard is to look in the mirror just after you wake up. If there is a red line of any kind across either eye, then probably that part of your eye is exposed while you sleep.

Funny how dismissive doctors can be ~ they’re not going through it, are they? As my Dad used to say, they always let you know that after a procedure you will experience "temporary, mild discomfort." Really. ” title=”Very Happy” />

[cathycnm November 4, 2008 at 5:38 pm Post count: 284]

#1075665

Lynn – That is interesting. My understanding is that anything over 25% is abnormal uptake and that the uptake helps the endo determine the "severity" of the disease and rule out nodules. My uptake was 33%. When the radiology folks asked me about history, I said my guess was early, mild Graves. In the end, everyone said I had it pegged. I wonder if your endo means more severe Graves requires the 70%.

My own T3 and T3 were normal but TSH very low – but it had been normal 12 months prior so I knew I was early – and my mom had Graves. Honestly, I agree with the information that says different thyroid diseases are more similar than different – and what one is originally diagnosed with will often shift to something else as labs change with progression of the disease.

Let me know how it goes with your PCP. I am interested.

[Bobbi November 5, 2008 at 6:52 am Post count: 1324]

#1075666

I’m sorry that there is so much confusion for you, Lynne.

I thought I might try to cut through the confusion a bit — hopefully it will help. Basically, hyperthyroidism is diagnosed by a blood test. That test shows that there is a suppressed level of Thyroid Stimulating Hormone (TSH) coming from the pituitary. When the pituitary detects too much thyroid hormone, it lowers it’s production of TSH in an effort to lower the level of thyroid hormone. So, if you had a blood test that shows low TSH (and high levels of thyroid hormone, if those were tested, too) then you are hyperthyroid.

Unless your hyperthyroidism is caused by an actual infection (which your immune system would fight), it typically does not matter what the cause is in terms of treatment options. The treatment options for any cause other than infection are 1) antithyroid medications or 2)removal of some of the thyroid (either by RAI or surgery). For individual patients, doctors may recommend one treatment over another for specific reasons. Just because there are "options" in general, it doesn’t necessarily mean that every patient could safely choose any of the options. So it is important to talk with your doctor about your situation and why a treatment has been recommended over another.

The most important thing for you to focus on right now is how best to get your thyroid hormone levels well-controlled. Your doctor will have given you a recommendation. If you don’t like it, you could get a second opinion. Many of us go on antithyroid meds during this decision-making time so that while we are trying to decide on a more permanent choice, our bodies are (hopefully) protected from too much thyroid hormone.

I hope this helps, and I wish you good luck with your decision.
Bobbi — NGDF Online Facilitator

[LynneB54 November 10, 2008 at 2:48 pm Post count: 32]

#1075667

Hi Bobbi,

Thanks so much for the information; it is always better to know more. My family doc said basically the same thing – whether I have TMNG or Graves’ doesn’t matter as far as treatment goes. However – I insisted that I wanted a diagnosis (that’s not too much to ask, is it??) He said I could have a biopsy (which I naturally declined) or just wait until my symptoms get to the point that the diagnosis would be obvious. He and I didn’t like that option either! (We’ve known for several months that I’m hyper, the only question is why.) But he did order bloodwork again and checked for antibodies. If I understand that – if it’s positive then there is no question it’s Graves’ but if it’s negative it doesn’t rule it out. Do antibodies come and go, or just not show up all the time?

Here’s what he said about Graves’ vs TMNG: TMNG comes on slowly over a long period of time but Graves’ has a much quicker onset. He said he thought I’d probably gotten sick over the summer, and I agree. (Endo said I’d been sick for years, which was news to me since I didn ‘t feel any symptoms before about May or so). I first saw the family doc in early September, and Thursday he said that he could tell I’m much sicker now. He still believes I have early Graves’ but is checking for thryoiditis as well (feels that is unlikely). He started me on a beta blocker and that has really helped. So now I’m just waiting for the blood results and hope I get an answer.

Regardless of the outcome, I have to make a decision pretty quickly about a treatment option. The endo, family doc, and radiologist friend all feel RAI is the only viable option. No big deal, according to them. However – that’s not what I’m seeing from other posts. Just what can I reasonably expect from that treatment? Will I have problems from the treatment or will the problems come (if they do) from being hypothyroid? I’m hearing some frightening stories about the difficulity of getting regulated from people who are hypo and it worries me. Does everyone have problems once they’re hypo? I fear weight gain, lethergy, depression, etc.

Is there any reasonable chance for a remission, meaning back to a normal thyroid? The odds on the antithyroid medication seems pretty low. As I understand it – I’m going to be hypo anyway – the only decision is how I’ll get there.

None of the doctors I’ve seen/talked to feel this illness is a big deal or very serious, but that’s not what I’m learning from this forum. The docs seem to treat it pretty casually – just do the RAI, take a daily pill when you’re hypo, and you’re back to normal. If only!!

This is all pretty scary stuff. Guess wishfull thinking isn’t a treatment option, is it? Oh well….

Thanks,
Lynne

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