[Ski]

#1071313

I’ve never heard anyone refer to that connection, and I don’t think the device could cause Graves’. Autoimmune diseases run in families ~ not necessarily thyroid disease, but more generally autoimmune, so lupus, rheumatoid arthritis, diabetes, psoriasis, or any of 80 autoimmune diseases in your family could indicate your chance of ending up with an autoimmune disease. They have recently found that there is one specific genetic defect in every patient with an autoimmune disease. It is found in people without autoimmune diseases, but 100% of patients with autoimmune diseases have it, so perhaps this is the "genesis." It appears that this piece must be in place for any autoimmune condition to occur.

The conventional wisdom is that Graves’ Disease begins with a genetic likelihood for autoimmune disease, and then something triggers Graves’. The likelihood is that there are several triggers, not just one. Changes in female hormones may contribute somehow ~ onset or recurrence of GD following pregnancy is pretty common ~ so perhaps that’s one way the device may have contributed to your GD, but right now, the overall causes are not well enough understood to come to a conclusion about any one particular thing.

[snyder95]

#1019384

Hi –

This is a topic I’ve not seen on the board and my endo doesn’t know anything about it either. About 3 years ago I had a Mirena IUD "installed". The first year was fine but then I began to notice weird things going on with my body which a year later I came to learn that they were symptoms of hyperthyroidism. I was diagnosed with Graves shortly thereafter. I am curious if there is any connection. I have no family history of thyroid issues and have always been a very healthy person.

For over 5 years, I’ve worked out several times a week and had wonderful muscle tone and strength. Of course the Graves robbed me of that and I got to a point where I couldn’t finish the workouts anyhow from being so tired. I had RAI in October 2008 and began synthroids in Feb. 2009. I am taking 125mcg daily and double that one day a week. My TSH was still at 14 on my last labs and I am due to go for blood work again next week. I have noticed a big difference in my workouts the last month or so and know that my muscles are building again but I continue to put on weight like crazy. I seriously have put on 25 lbs. in the last year and it’s depressing me. Again, I suspect that the IUD may be the culprit but am asking if there are any other Graves sufferers out there who suspect that the Mirena may have triggered this disease.

[cathycnm]

#1071314

Snyder95 – I have spent most of my career in women’s health and have never heard of a connection either. The mirena does release a small dose of progesterone – but these exert more of a local effect than the progesterone in birth control pills and much less than your own body does during natural monthly peaks.

I think it is easy to look back at what we did just before we were diagnosed and wonder. I was on parathyroid hormone (just started) and had also just stopped hormone replacement therapy (as in estrogen/progesterone) when I got my first symptoms of Graves. I mean it was within a couple of months – and I wonder to this day if there is a connection (I am still comptemplating reporting this to the FDA as a possible adverse effect of the parathyroid injections). We know hormone shifts might be a factor – such as the thyroid issues commonly associated with pregnancy, menopause, etc.

I concur with Ski that it is probably a whole cascade of events that include both genetics and environment that trip the trigger. It is interesting to hear your mirena story – thanks for sharing that with us.

[leyli]

#1071315

I am ABSOLUTELY SURE there is a connection. I have Graves disease and it has not been diagnosed because I will not go to a doctor who won’t acknowledge a hormonal connection and wants to zap my thyroid and put me on drugs forever. (I mean, seriously?? There MUST be a better solution than that!) My thyroid problem was triggered by extreme prolonged stress and the symptoms only appear in the last week of my cycle – and magically disappear if I take birth control pills (levonorgestrel/ethinyl estradiol) – even if I take just ONE or TWO pills!! I have had blood tests done when I feel OK and when I don’t – surprise! They match up exactly (as in, they show hyperthyroid and antibodies when I don’t feel OK and show PERFECTLY NORMAL when I do). I can also make myself go hyperthyroid by drinking way too much coffee (remember, this is backed up by my blood tests!) Every doctor (or anyone else for that matter) who I have told this just looks at me like I’m crazy… and they have NO IDEA about the blood tests either. Everybody just shrugs and looks stumped. There IS a genetic basis for this (it runs in my family), and I wonder whether there weren’t some similar issues that were ignored with them as well. I wish doctors (and everyone else, but especially doctors) would put some real effort into researching this and actually THINKING about it… common sense goes a long way when so many patients are seeing, feeling and suspecting connections. Why should I be more educated about this than my doctors (I mean, I’m all about patient empowerment and being well informed and making your own health decisions, but… aren’t they the ones who studied and are supposed to be able to help with this kind of stuff)? Unfortunately almost all the studies that have been done focus on HYPOthyroid and menopause, so for young healthy women having hormonal imbalances that are probably treatable by non-invasive means, the only medical option continues to be a complete destruction of a very important organ, only to create the opposite kind of torture. Which seems especially ridiculous considering how much stress most women are under these days and the known effects of stress on hormones, etc… If anyone reading this DOES happen to know of some studies that have been done or any real, solid information on these connections, please do post.

[Kimberly]

#1071316

Hello – I agree with you on the connection between stress and Graves’. Every time I go through extreme stress, my thyroid hormone levels are guaranteed to spike.

Unfortunately, there is no clinically *proven* way to interrupt this process. For now, we are stuck with the three conventional treatment options for hyperthyroidism: Anti-Thyroid Drugs, Surgery, or RAI.

There is actually a division of the National Institutes of Health that is called the National Center for Complementary and Alternative Medicine — and their mission is to look at alternative and complementary therapies from a science-based perspective. Hopefully, one day, we *will* have more concrete information on the effectiveness of alternative and complimentary therapies.

Unfortunately, the Foundation and its volunteers have had contact with patients who became much more ill – and even patients who died – because they made the decision to reject conventional treatment. Remaining in a hyperthyroid state is a dangerous situation, as this can cause complications such as bone/muscle wasting, heart problems, and thyroid storm, which has a 20-50% fatality rate.

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