Monday, May 8, 2017

I'm Upset About Gadolinium

We spoonies have to trust our doctors.  They have what we don’t – years of training, access to diagnostic clues and the latest treatment options.  Trusted physicians are crucial to our care.  I do trust my physicians and am so grateful for them, but I no longer trust elements of medical research, or the FDA.

When I was diagnosed with MS in 1996 I did everything my doctors told me.  I got regular MRI’s and I took medications that ruined my quality of life, with no evidence of benefit.  After the first few years, I finally learned balance, and began honoring my intuition as much as the doctors’ advice.  I became a partner in my treatment and, along with my physicians, made wiser decisions about medications and lifestyle.  But I never questioned the MRI.  It's considered the gold standard in tracking the progress of neurological disease, and every professional I’d ever come across, over 21 years and in 4 States where we’ve lived, valued this view into my brain and spine.  Heck – I valued it too.

At my last MRI, the technician paused halfway through, as always, to administer the contrast agent.  I was given a consent form to sign, once again, before the vial of red liquid was injected into my vein.  For the first time ever, I wondered about it.  I asked the technician what it was. 

“Gadolinium is a very rare earth element, a heavy metal that is only found in one place on earth and is very expensive,” she said.

[Heavy metal.  That taste in my mouth – that’s what it was – metal.]

“I taste it, “ I said, “I guess I should drink a lot of water today to wash it through?”

“Yes, that’ll help, it’ll be fine,” she said.

That was two years ago.  It isn’t fine.

I scheduled my next MRI recently, but then I remembered I’d meant to find out more about gadolinium.  I did some cursory online research.  Very quickly I learned that deposits of the heavy metal remain in our systems.  The National Institutes of Health believed at first that patients with renal failure (kidney issues) were most at risk, but then they realized that all recipients of gadolinium are prone to lingering deposits in our brains.  The FDA opened an inquiry into “gadolinium poisoning” in 2015, but they’re not in much of a hurry to finish.  They are also not concerned with informing the Neurological practitioner community in the meantime.  My neurologist was grateful for my research and said she had never heard of the issue.  The NIH article stated that anyone who has received more than 6 lifetime doses is particularly vulnerable to gadolinium poisoning.  I’ve had at least double that amount.  The metal settles in the detate nucleus and the globus pallidus of the brain.  Memory, cognition and gross motor skills are affected (which also happen to be classic MS symptoms).  Further, the gadolinium sets us up for zinc toxicity.  I have no idea if my symptoms are really caused by MS or if it’s just the heavy metals in my brain.

My neurologist was happy to re-write my MRI order, with no contrast.  She explained the contrast only helped to show active lesions anyway.  Symptomatically, it’s clear to me when my lesions are active, so there’s never really been a need for the contrast.  My neurologist said she can still get a lot of information from an MRI with no contrast.

I’m angry that anyone ever thought putting heavy metals into sick people is a good idea.  I’m angry the FDA doesn’t care enough to put their relationship with big pharma aside in order to prioritize our health.  I’m angry they don’t bother to inform our caregivers that we’re being poisoned.  I’m angry at myself for my blind trust in the system, and for failing to read every word on the forms I’ve been signing all these years.  Please read the fine print, everyone.


  1. All the concerns about radiation, and so little discussion of the contrast. My beloved man has had nearly 12 years now of often quarterly scans (PETs, MRIs, and CTs, both with and without contrast)...can only imagine the "residual" in his system.

    Although in our situation, that "side-harm" is lesser than the spectre of recurrent stage 4 cancer---I am crestfallen that there's not more "open" discussion for all afflictions and treatments and a means by which the patient can readily ascertain and weigh their risks vs. benefits.

    To my view, big pharma is far less the "enemy," (actually for us, they've been angelic---huzzah for pharma-financed clinical trials!); the guiltier party to my view tends to be the big insurance companies pushing the least expensive interventions when they may not be the most healthful for the individual patient. :(

    Love you, and trusting that your strong spirit and goodness can counterbalance any dastardly element like gandolinium. <3

    1. Thanks Darlin' -- Yep, I'm venting today since my risk vs. benefit is a no-brainer with the gandolinium (pun intended). Knowing exactly how many active lesions my brain has doesn't necessarily inform any decisions on my healthcare since studies show that lesions don't necessarily corrolate to level or type of disability since our brains are so complex and unique and can re-route wiring. The benefit of the test lies in a baseline vs. change comparison, which can be seen with or without contrast. Of course Scott's risk/benefit ratio is clear, and thank goodness for the blessings of regular testing and clinical trials and the right pharmaceuticals for him! I continue to pray for every good thing for him and for your sweet family! I normally would rather not wallow in a "woe is me" stance, preferring to focus on health and my beautiful life instead of illness, but every once in a while my functional denial falters and I have to take a look at what's going on. Btw -- I agree with you about the insurance companies getting in the way of medical decisions. I'm just not appreciating the R&D for MS drugs right now since they just keep reinventing the wheel with more drugs that disable the immune system, and I don't believe that's a path to a cure. I just think the dollars could be so much better spent by exploring different angles. I was told there'd be a cure by 2000. That's enough, though, I'm coming down off my soapbox and focusing anew on the positive! Love you!

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