On May 18, 2018, Dr. Richard Semelka added Head Pain to the recently revised primary clinical diagnostic findings for Gadolinium Deposition Disease (GDD) and he described two critical diagnostic features of GDD.  First, symptoms of GDD must start within minutes to one month after administration of a gadolinium-based contrast agent (GBCA).  Second, the symptoms experienced by the patient after GBCA administration must be new, and not preexisting.

There are now 6 symptoms that stand out to Dr. Semelka as critical diagnostic findings for GDD.  He said that it is imperative that individuals have at least 3 of the symptoms, but he prefers to see 5/6 to be certain of the diagnosis.

The 6 main clinical criteria for Gadolinium Deposition Disease, as described by Dr. Semelka are:

1.  Intense burning of the skin and skin substrate.  Arising in early stage (early on after GBCA): This can be an all over feeling in the body, but often may be localized to the trunk region or distal extremities.

2.  Intense boring pain in bones or joints.  Arising in early stage (early on after GBCA):  This can be any bones or any joints. Often the joints may be peripheral but can also be large joints like the knee or hip. Any bones can have severe point pain, but rib pain is quite distinctive for the disease.

3.  Brain fog.  Arising in early stage (early on after GBCA): Many terms have been used for this: mental confusion sounds more scientific, but brain fog gets the point across well and succinctly. Brain fog is also a prominent feature of lead toxicity, which is another heavy metal toxicity.

4.  Muscle vibrations (muscle fasciculations) and skin pins and needles/tingling (early on after GBCA).  These symptoms may represent part of the same process that is causing brain fog. Muscle vibrations/twitching and pins and needles skin sensations generally reflect nerve disease (neuropathy).

5.  Head pain (early on after GBCA).  Headache is both a very common occurrence and shows tremendous variability.  GDD sufferers describe it as a head pain, and unlike any other type of head-ache they have previously experienced. These two properties provide differentiating features for this entity.  Some describe it as a burning pain and as an extreme tightness feeling (like a tight bathing cap on their head).

6.  Distal arm and leg skin/skin substrate thickening, discoloration, and pain. Arising in the subacute stage (2 weeks +): This is very much like the principal features of NSF, but generally less severe. Instead of woodiness, doughiness; instead of redness, pinkness; instead of extreme joint contractures, stiffness of joints and decreased range of motion. Skin tightness is a feature of GDD as well.  This symptom complex should be expected.

Besides these 6 primary clinical diagnostic findings for GDD, Dr. Semelka noted that patients complain of other clinical symptoms, including gastrointestinal issues such as diarrhea and abdominal pain, and cardiac issues such as abnormal heart rhythms.  Some have described a persistent metallic taste or olfactory sensation.

Additionally, a GDD diagnosis requires that physical evidence of gadolinium (Gd) in the body must be present.  Based on accuracy, safety, and cost, the preferred test is a 24-hour gadolinium urine test.  The 24-hour urine collection should be performed 30 days or more after a contrast-enhanced MRI.  The amount of Gd in urine depends greatly on how long ago GBCA administration occurred and whether the GBCA was a linear or macrocyclic agent.  A year or more later, it might be necessary to do a provoked urine test after administration of a chelating agent such as DTPA or EDTA.  Dr. Semelka prefers the use of DTPA since it binds much more tightly to gadolinium than EDTA does which should result in less redistribution of gadolinium in the patient’s body.

More details of the revised identifying features of GDD can be found on Dr. Semelka’s Blog page of his website: https://www.richardsemelka.com/

My thoughts –
Once again, I think it is important to note that as of this writing, Gadolinium Deposition Disease (GDD) has not been officially recognized by the medical community and FDA

However, we know that retained gadolinium can cause NSF (Nephrogenic Systemic Fibrosis) in patients with severe renal disease.  If less gadolinium is retained, such as might occur in a patient with normal renal function, it seems logical to think that it could cause a similar but less severe NSF-like disease process.  Whether it is called GDD or something else, when a toxic metal is retained in the body, I believe there will be adverse effects which can result in clinical symptoms of gadolinium toxicity.  It is critically important to everyone who has had an MRI with a gadolinium-based contrast agent to determine the long-term consequences of having gadolinium deposited in their brain, bones, skin, and other tissues.

Sharon Williams
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