Editorial – Last December, I posted a Viewpoint titled “Gadolinium Retention – Is it all in my head?”  When I wrote that, I believed I had retained gadolinium in my brain, thyroid gland, and various other parts of my body.  I believed it, but I did not know it for sure.  It is one thing to think it, but it causes totally different feelings when you have confirmation that you have retained a toxic metal in your body.

On April 8, 2015, I posted about the gadolinium found in my thyroid tissue that was removed 51 months after my 5^th dose of a linear gadolinium-based contrast agent.  In July, I learned that an analysis of my 2012 non-contrast brain MRI found evidence of gadolinium deposition in the globus pallidus; that MRI was performed exactly two years after my last dose of contrast.  Because of recently published studies, I was not surprised that they detected residual gadolinium in my brain.  At the time of my MRIs, except for hypertension and a past history of migraine headaches, I had no history of anything known to alter the blood-brain barrier.  Then and now, I continue to have “normal” renal function with an eGFR >60, but yet, I have evidence of long-term retention of gadolinium in my body.  If I only had gadolinium in my tissues and no symptoms, I might not worry about it as much, but that is not the case.

I am now always aware of the inside of my head – of my brain.  I can’t explain it, but the inside of my head just feels different to me.  I also have constant pressure and frequent pain inside my head.  My short-term memory and deep-thinking ability have been impacted.  When I try to write about newly published studies about gadolinium retention, it takes me much longer to do that.  Some days I just can’t get my thoughts together to write much of anything which explains why I am now behind on writing for the website.  It is not just my brain that has been affected by retained gadolinium; other body systems have been affected as well.  It has affected my quality of life, and my interactions with my family and friends.

But I am not the only patient with normal renal function who has been adversely affected by retained gadolinium, I believe that there are many others.

In its July 27, 2015 Safety Announcement about gadolinium-based contrast agents, the FDA said, “It is unknown whether these gadolinium deposits [in the brain] are harmful or can lead to adverse health effects”.  I know first-hand that gadolinium in the brain and elsewhere in the body has adverse health effects.  It is my opinion that the FDA and research community need to study patients like me and other members of our support group who complain of “gad brain”, “brain fog”, “burning pain”, and other unexplained symptoms since our MRIs with contrast.  Why study rats when you can gain first-hand knowledge from affected patients who have proof of gadolinium retention?

I am ready and willing to participate in studies to try to determine the extent of the damage being done by retained gadolinium in patients with normal renal function.  I know other patients who also want to participate.  Just tell us where we can sign up.

Statistically, our numbers might not seem significant to some people.  However, patients with normal renal function who have symptoms of gadolinium toxicity have never been properly diagnosed.  Because of that, the total number of patients affected by retained gadolinium is unknown.

The FDA’s Safety Announcement was the first step in the right direction on the gadolinium retention issue, but patients cannot wait until all the new research has been completed.  Those already affected by retained gadolinium still need a gadolinium-related diagnosis and treatment options.

As I said before, I know first-hand that gadolinium deposits in the brain have adverse health effects.  Now what can be done about it?

Sharon Williams