[erobinson219]

#1018022

I was recently diagnosed with Osteopenia and my doctor wants me to take Boniva once a month. I read that there is an association between Graves and Osteopenia. I have Graves that was treated with the radioactive iodine and I also have the thyroid eye disease. I am very nervous about taking Boniva after reading about all the horror stories online from other women.

Are there other options that work that I should try first? I know I need to lose weight, exercise, take some supplements, and drink a lot more water – but is that enough? Some say that Boniva can have some really bad side affects that last a very long time – even after taking just one pill.

I thought I’d ask my fellow Graves sufferers for advice here.

Thanks in advance.

[snelsen]

#1062262

You have asked a complex question. It is true that there is a slight increase for the potential of osteopenia and/or osteoporosis (and a slight incidence of atrial fibrillation) of UNTREATED Graves’, (a continuing hyperthyroid state.) So remember, now that you had had RAI, assuming you are on the right dose of Synthroid (or whatever thyroid hormone you are taking,) you are pretty much back in the normal population. But there are many other factors which make a difference.

There is a lot more to the story of osteopenia and osteoporis, too, such as family history, body frame, weight, gender (more women have than men) pre or post-menopausal state, and if a woman is/is not on estrogen replacement.

Bisphosphonates (the class of drugs you are talking about, Boniva being one of them) have been around for about 10+ years. Not very long. If you are interested, I can refer you to a very long and fairly complicated reference from the University of Washington on them. Let me know. There is so much to know, and there are several different forms of the drug to consider. A lot of studies are being done, but it will be years and years before conclusive answers are known.

I have osteopenia and osteoporosis, plus being female, a strong family history, and being post-menopausal. I take Zometa (zoledronic acid) 4mgm IV once a year. I believe the dose has been changed to every two years in the recent past. In addition, I have subclinical hyperthyroidism, so the risk is slightly increased. (This means, no matter how low my thyroid dose, my labs indicate that I am hyperthyroid.)

It sounds untrue that one pill can cause a terrible side effect. I suspect you have heard a combination of stuff, possibly referring to the extremely rare cases of necrosis of the mandible. And that occurred a while ago, in patients who had bone cancer, who were having super high doses of the drug. Since then, it has been found that much lower doses accomplish the same thing. Please check this out with your doctor on this.

You are right about exercise. The more we walk, the more bone strength we gain. With weight, if our weight bearing bones are weaker anyway, the more weight they have to support, the higher the risk for hip and spine fractures and other fractures.

I’d have a more extensive conversation with your doc, tell him your concerns. There are risk/benefit ratios to weight with lots of drugs. Certainly, all the things you mentioned in your post are things you can do to help your bone health. I try really, really hard to do a lot of walking for this reason.
Sorry if I wrote too much!
Shirley

[erobinson219]

#1062263

Thanks for your response. I would be interest in the U of Washington reference. I started looking online and can’t believe what I am reading. i am scared enough to not take the pill I just paid $35 for (it would have been $84 a pill without my insurance). this is what i read so far –

http://www.topix.com/forum/who/sally-fi … 74R3RO3U92

http://www.healthiertalk.com/these-drug … bones-3260

Yikes. I think I’ll start with all the naturals and find out find out more.

[Kimberly]

#1062264

Agree with Shirley that a discussion with your doctor is in order. Keep in mind that the patients who you see posting negative comments on forums are generally in the *minority*. The patients who take a particular drug and have success tend to move on with their lives — and don’t take the time to post on public forums.

I’m not knowledgeable about the drug that you mention, but I can tell you that my grandmother had severe osteoporosis. All she had to do was land *slightly* wrong coming down a set of stairs, and next thing she knew, she would be laid up for weeks at a time with a fracture. So I would certainly think long and hard before abandoning a conventional drug for another treatment option that isn’t well proven. Just my 2 cents! ” title=”Wink” />

[erobinson219]

#1062265

I think I need to look for a doctor I can trust. That’s probably the first thing to do and wait on any medication until then. The doc who prescribed in the latest doc in the immediate care center I go to for just basic stuff. I think he’s ok for routine colds, spraines, etc – but am concerned about his judgment in latest research or outside his realm of experience – he’s a bit of an old coot – nice but not sure if he can call this one.

Maybe I should go back to my orthopedic guy and ask. Too bad I already know one – huh?

Thanks for the advice. I am going to keep reading from all sources. It scares me a bit not only how some people have bad reactions after only 1 pill – but that some more recent research shows no reduction in fracture even taking the meds for a long time. If that’s true then what is the point?

I am curious as to why taking thyroid medication such as synthroid can increase risk of osteopenia and osteoporosis.

[Kimberly]

#1062266

erobinson219 wrote:I am curious as to why taking thyroid medication such as synthroid can increase risk of osteopenia and osteoporosis.

Hello – The resources I have indicate that it’s not the synthroid itself that is linked to an increased risk of osteoporosis…but rather being on *too high* of a dose that increases this risk. So once you find your "sweet spot" with the replacement hormone, you will still want to get your thyroid hormone levels checked at least annually to make sure your dose is where it should be.

[Bobbi]

#1062267

While we are hyperthyroid we lose bone. So any connection between Synthroid and osteopenia or osteoporosis has to do with the wrong dose of it over an extended period of time. Keep firmly in mind that Synthroid IS T4 — it is chemically identical to the body’s own thyroxin (T4). So, in and of itself it is not harmful to us. The wrong amount of it, over time, is.

Steroids also cause us to lose bone — so if you are taking them for the TED, know that they are a problem as well, long-term.

My mother-in-law didn’t have to do much of anything to break bones, either. Stepping off a curb, not falling, she fractured her foot. Worse, a jolt caused stress fractures in her spine. Taking osteopenia seriously is important. But know, too, that osteoporosis is a natural by-product of aging. The way it was explained to me: Throughout life, there are cells which remove bone, and cells which make new bone, active in the bone structure. Until we get to our twenties or so, the cells which create bone are the most active, and our bodies are "banking" bone. After our twenties or thirties, however, the cells which remove bone gradually, over time, become more predominant. And by late life, they can be causing the swiss cheese type structure that is associated with osteoporosis in bones. Some people are genetically blessed with more solid bones than other people. Your family history can be helpful in guiding you as well. If you remember elderly grandmothers and aunts who were bent over when they walked, you need to pay more serious attention now to the osteopenia.

What can we do? WEIGHT BEARING EXERCISE stimulates bone creation. So, daily walking, jogging (if your joints are young enough), etc. is helpful. Lifting weights — ditto. Swimming, unfortunately, is not weight-bearing, so while it is a healthy way to exercise, it does nothing for the bones. Ingest plenty of calcium. That is why we have the recommendation after a certain age to take calcium supplements. (Most of us do not eat enough calcium-rich foods to compensate for the loss of bone.)

And keep Kimberly’s comments in mind as well: just because some bad side effect is posted on the web, it doesn’t mean that it is COMMON. There are millions of folks posting to the web, and millions of us have taken the drugs for our bones. It has been a minority of people who have had bad problems, and most of them were taking huge doses of these drugs for other reasons than osteoporosis. It could be that, over time, more problems with these drugs become evident, as more people take them for longer periods of time. But we just don’t know.

[erobinson219]

#1062268

Good advice.

My TSH was .02 and abnormal when it was last checked and I have since lowered my synthroid dosage. It wasn’t in that range for too long since I do get it checked once or twice a year. However, I probably was hyperthyroid for many years before diagnosed and treated so who knows how much damage that did. I did take steroids for a period of months for the TED more than 2 years ago now I think – so not sure if how much impact that had.

I do know that there is more I can do naturally to address this with exercise, supplements, diet and drinking plenty of fluids. I also had a vitamin D deficiency that I was treated for over 2 years ago with rx strength D. I have been remiss over the past year and need to get back on track.

I think what I am going to do is get the natural things in place, research the meds, and check my bone density in a year to see if it changed at all. If it gets a lot worse at that time, I can be in a more educated position to make the decision again to medicate or not.

I realize that I can’t go by all the reports online..but I do have some serous doubts and need more information before going down the med route.

Because one can still build bone – there is hope to reverse this naturally.

Thanks.

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