[cath2284]

#1019914

Dear All,
I was just diagnosed today with hyperthyroidism and Graves though my husband is a PA so he and I have been suspecting it for some time (not the Graves part, but the hyper part). A few quick questions for all of you much more knoweldgable people than I am!

1. LEVELS: So my doctor told me they measure two different levels. One of my levels is at 0.007 (really low) and 7 (really high). What are these two levels and what are normal ranges?

2. RUNNING: I am a long distance runner. I run marathons among other things and ran one just a few months ago. I definitely felt more tired this season running than usual, but figured it was because of post-partum (I had a baby in April). Running is kind of my sanity. I run 3 miles a day and I think that is what has been keeping my anxiety at bay. Today the doctor said I have to go on a temporary break from running until they can get me stable. I am signed up to do a half marathon in March and though I don’t want to seem impatient, I would like to get back to normal as soon as possible. How long should I plan on to become "stable"? I am taking 6 proputhyacil (or whatever it is) a day and a heart med and going in for follow-up blood work in January. I guess I am just wondering if this is something that will stabilize in a few months or more like a few years?

3. TREATMENT WITH MEDS: I am really hoping after all I have read on here that I can avoid RAI or surgery. From what I have read, I have pretty mild symptoms; lots of the symptoms but none that have wreaked complete havoc on my life so if the meds improve things to where they are stable, I see no reason to give them up for something permanent. But are there any advantages to doing something permanent versus just staying on the meds as long as they work?

Thanks ahead of time for the answers. For those who like humor, a few days ago I was a blogger on a running website for crazy marathon runners and now I find myself blogging on an auto-immune disease site (sadly I doubt I will keep blogging on the running site). Okay, I don’t know if you see the humor in that, but I totally do (that and my husband’s twitching his eyes and sucking in his face to poke fun at my protruding right eye and anorexic appearance). Hey, sometimes you can laugh or cry, so at least today I am going with laugh…

[Bobbi]

#1074983

Hi, Cath, and welcome to our board.

In general, when we are diagnosed as hyperthyroid, the lab work involved shows TSH levels (Thyroid Stimulating Hormone), which comes from the pituitary gland, and the actual levels of thyroid hormone (typically T4, T3 and, perhaps, T7 which is a ratio of the first two). Our endocrine system has feed-back mechanisms in place to regulate the production of hormone. In the case of thyroid hormone, the feedback comes from the pituitary. When thyroid hormone levels get too high, the pituitary lowers it’s production of TSH; and if thyroid hormone levels get too low, the pituitary raises it’s production of TSH. (Some folks find it helpful to remember a seesaw, with TSH on one end, and thyroid hormones on the other.) The TSH is a bit like a "running average." It moves somewhat more slowly than do the actual levels of thyroid hormone. The test for it is also very fine-tuned (i.e., it is possible to measure extremely small amounts of it with accuracy). Thus, our doctors use the TSH as the guide to how well our treatments are going. It can help if you start getting a copy of your lab reports as they are done, and keep a file. This helps if you ever change doctors; and it also helps you to keep track of treatment.

There are several reasons for the prohibition on running. Excessive levels of thyroid hormone cause us to loose muscle (and bone, too). There may also be some sort of adverse effect on the ability of muscle fibers to snap back from exertion in their normal way. PUtting excess strain on them, at a time when they are not functioning properly can lead to injury. But the most important part of the equation is the heart, and there are two problems for the heart with excess thyroid. First off, the heart is a muscle, too, subject to the same problems as the other muscles. But second, excessive amounts of thyroid cause the heart to beat faster (and less efficiently) and, more importantly, it can interfere with the rhythm of the heart beat at unpredictable times. Arrythmia is dangerous. Until our thyroid levels are brought into complete control, we are advised to limit exercise. Ask your doctor about slower walks, something like that, to help get you out, if you are feeling like some exercise.

The short-hand name for the drug that you are on is PTU (much easier to spell than the "real" name!), and you will see PTU in posts on this site. (Also ATD — antithyroid drug, which is what PTU is.)

As to whether or not you will be OK to run in a March marathon — only your doctor can give you that information — and it is unlikely that he/she will hazard a guess until much later. How well the drug works for you will be the important factor. I will mention that an Olympic track gold medalist was diagnosed with Graves about 12 years ago or so, and she came back to compete in subsequent Olympics. I believe she did RAI, however. Not that it matters, necessarily. The point I’m making is that we can get well again if the treatments work to control our thyroid hormone levels well.

And, if you have autoimmune Graves, you need to start thinking in terms of permanant disease. Not necessarily permanently ill, but permanent disease. The difference is that we need some type of treatment forever. Our treatments do work to give us back health if we catch the disease early enough. And, since we have two general options (ATDs or thyroid removal) if one treatment is not effective, andother one stands a very good chance of working. There can be respite in the form of a remission (technically, being able to go off the drugs and have normal thyroid function for a year or more), but remissions are unpredictable, and by definition end, so even if you do experience a remission you absolutely must keep an eye on your thyroid levels for the rest of your life. So, I recommend that you keep an open mind at this point about what treatment option might be best for your needs. There are books recommended on this site that can give you very good information about the drugs involved, the side effect issues, etc., so that you can make an informed choice as options are presented to you in the future.

Wishing you happy holidays, and better health soon.

[cath2284]

#1074984

Thanks for that information. It is extremely helpful. Cath

[JoyC]

#1074985

Funny thing. I was not a marathoner- I am really proud to be able to run 5Ks. When I started feeling bad, one of the first things I noticed was that I didn’t have energy to run. After I got diagnosed, I asked the endocrinologist if I could run. (For me, running was 2 miles or so, about 5 times a week.) He laughed and said, "Oh, you won’t feel like running for awhile." Well, being persistent, I said asked if it would be OK. He told me to monitor my heartrate and do what I felt up to , since I had already been regularly excercising. I am NOT on beta blockers because I also have asthma and beta blockers can exacerbate that. While you need to do what your doctor says- I know I feel better when I run, even if I can’t go as far or as fast as I used to. Hyperthyroidism can really weaken your muscles, and I have learned not to expect what I used to be able to do, but feel so much better when I can at least maintain some running time. Definitely discuss with your doctor what YOU feel up to. But, don’t place too high expectations on yourself. Training for a marathon when you are trying to get your Graves in control is probably asking way too much of yourself. Your body is going through a lot, and it may take awhile to get things regulated.

[James]

#1074986

I would have to agree with Joy. If exercise is such an integral part of our lives pre-diagnosis, and it makes us feel better psychologically and physically, there is some merit in maintaining some exercise post diagnosis, if for nothing else, our mental healths sake. I can relate to this totally. Part of my lifestyle always has been working out, running, cycling, and a day at the gym was and still is critical to my overall well being. My endocrinologist simply told me, if you are used to working out, continue to do so, but within reason. In other words don’t be training for a marathon right now, but you don’t have to lie down on the couch and wait there indefinitely either. Particularly if your body is conditioned to aerobic activity, doing nothing when you are used to a strict exercise regimen can be hard on us psychologically (that was my experience). If you have been active for any length of time you probably have a good idea of what your target heart rate should be (you definitely don’t want to be exceeding that right now). Factors like age, overall health and fitness level have something to do with this. If I was diagnosed today (some 15 years later), I don’t think I would have the same energy to maintain the level of activity I once did, especially after a GD diagnosis. All of theses things have to be considered of course and discussed with your Dr. If he is onside, go for it! It kept me sane during times of emotional upheaval which was a result of being hyperthyroid. I think we have to do everything we can to take care of our emotional well being as well (within reason).

Best to you,

James

[Bobbi]

#1074987

What some of you seem to be ignoring is that Cath’s doctor told her she had to go on a temporary hiatus from running. That’s the bottom line. The doctor knows she’s a runner. The doctor knows it is important to her. And the doctor knows what her Graves condition is like. And the doctor has vastly more experience than any of us with the hazards of running while hyperthyroid. When the treatment options have kicked in, I am sure that the doctor will let her know when it is safe for her to resume that activity. This is especially true since if Cath is like me, she will be nagging the doctor to let her run again.

There may in fact be safe alternatives — perhaps walking — that can be explored with the doctor. Only her doctor can tell her what activity level is safe for her at this particular moment in time.

[elf]

#1074988

Cath – you are the third woman getting Dx with Graves with an 8-month old baby (the other 2 are myself and another lady I met on the net). The medical consensus says post-partum thyroid problems happen within 3-4 and up to 6 months post-partum, – I guess, they need to re-write that ” title=”Confused” /> Though you said you were hyper well before that, – yes, I had the irritability of Graves behavior way before my thyroid enlarged overnight.

Levels – different labs have different ranges for thyroid hormones, so giving just a single number won’t make much sense if the ranges are not provided – though the number with many zeroes is definitely Grave-ish TSH.

Permanency of treatment – There are groups of people with Graves who are comfortable with different things – some swear by their goal of reaching remission (through meds+diet), some are terrified of RAI and prefer surgical removal of the thyroid, and still the others go through RAI and this group is generally invisible, though I suspect it’s the largest one. I had RAI, and I understand people’s aversion to something permanent. From my own perspective, the goal of reaching remission is too elusive, too fragile, too dependent on precision (of behavior + medication + diet) that I couldn’t or wouldn’t be able to adhere to over long term. In short, it’s too much work when I’m too busy with young children. Running (or any other all-consuming goal) seems to me as an antidote to another all-consuming goal – achieving remission.

[James]

#1074989

cath2284 wrote:3. TREATMENT WITH MEDS: I am really hoping after all I have read on here that I can avoid RAI or surgery. From what I have read, I have pretty mild symptoms; lots of the symptoms but none that have wreaked complete havoc on my life so if the meds improve things to where they are stable, I see no reason to give them up for something permanent. But are there any advantages to doing something permanent versus just staying on the meds as long as they work?

I can’t speak to the “Advantages of doing something permanent”, as I have not gone down that road, but many others have, and can tell you the benefits and pitfalls for their experiences.

As for “meds”, I think you mean Antithyroid medication in this context. YES, but you have to be diligent in ensuring your levels are optimum for you (normal ranges may vary), and take one day at a time. Some people have had serious reactions to ATD’s (but it is rare), so that has to be kept in the proper context. If your Dr. is onside, and there is no medically compelling reason NOT to take ATD, then go with what you are most comfortable with. You can always choose other alternatives later if need be. Just make sure you Dr. is willing to work with you in this decision. Not all medically professionals are great with ATD management. Proper ATD management is imperative.

Take care,

James

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