Gadolinium Deposition Disease And Me
I had a single gadolinium-based contrast MRI. Boy, was that a mistake.
Wednesday 9th November, 2016: That was the day my life changed. That was the day I had a routine screening magnetic resonance angiogram (MRA) using a contrast agent called MultiHance. And it was the same day that my journey with Gadolinium Deposition Disease began.
I was uninformed, uneducated, and had no idea what I was walking into. I knew that I was having the contrast-enhanced MRA scan done to screen for rare complications of an inherited condition that I have. There was a really good chance the MRA would be normal (and it was).
Before arriving at the hospital to have the scan I didn’t know that I would be injected intravenously with contrast. As a result, I didn’t bother researching what contrast agents were used for MRAs.
If I had done some digging, what might I have found back in 2016?
Actually very little. I would have found out that there are a number of different contrast agents used for MRI and MRA. However, at that time all of them used a highly toxic heavy metal called gadolinium.
The only patient group being followed up long term following gadolinium-based contrast agent (GBCA) use were patients in kidney failure. I would have also found out that in renal patients GBCAs were indisputably known to cause an awful, chronic condition. This condition is called nephrogenic systemic fibrosis (NSF).
But I would have also read some (falsely) reassuring propaganda stating that renal patients were different from all other patients. Renal patients retain gadolinium because of impaired renal function. But, like most people, I was told that everyone else eliminates the GBCAs within about 4 days of being injected. This sort of thinking was very prevalent back in 2016, despite the fact that even then there were several articles disproving this.
I have normal kidney function. Clearly I should have had nothing to worry about. I wasn’t going to retain gadolinium… or was I?
What else might I have found, had I dug a little deeper?
There were some rather unsettling reports from a a wonderful patient support group, called the Lighthouse Project (gadoliniumtoxicity.com). The Lighthouse Project had collected stories, in the form of a survey, from people who complained of chronic problems after receiving one or more GBCA-enhanced MRI scans.
gadoliniumtoxicity.com have also amassed a database of urine results which go back over several years. They prove that in many people gadolinium continues to be eliminated in the urine for months and even years. The really interesting thing about this data? NONE of these people had kidney problems when they had their GBCAs.
What sort of issues were they suffering from?
Ringing in the ears
Low body temperature
Swelling of the extremities
Many of them were suffering from a constellation of symptoms, but they tended to fall into a few main categories:
- All of them reported chronic pain. In fact pain was the number 1 priority for people who had multiple GBCAs
- Almost all reported chronic muscle symptoms, like twitching and weakness
- Most reported some sort of chronic skin changes
- Many reported chronic eye symptoms
- A lot reported chronic cognitive problems
- Most reported new onset of ENT problems, like ringing in the ears, swallowing problems and voice problems
Lots reported other problems, including low body temperature, hair loss, itchy skin, balance problems, swelling of the extremities, and chronic fatigue.
Could they be suffering from Gadolinium Deposition Disease?
You can find out more on the details of this study here gadolinium symptom survey. Gadolinium deposition disease is the term coined by Dr Richard Semelka for many of the most commonly experienced long term symptoms. Gadolinium Storage Condition is what he has called the retention of gadolinium in people who do not (at present) complain of any characteristic symptoms.
What symptoms of gadolinium toxicity did I develop after my one and only GBCA? (You can be certain that there is nothing on this planet that would convince me to have another one)
Well, I was fine when I was in the scanner, and for a few hours afterwards. I was fine until I got home. In fact it wasn’t for several hours that I developed my first symptom: a headache.
And it was a doozy. It was pounding. It was severe. It didn’t go away. That headache was like my shadow; day and night it pounded at me for months. It was unabating. It chipped away at me constantly…boom, boom, boom. It hurt to laugh. It hurt to cry. It hurt to move my head. But the headache was just the start of my problems.
That night I barely slept.
I’ve had insomnia before, and I’ve had it for years. But it had been improving. This felt different. It felt like every nerve was switched on. I felt electrified. No matter what I did, or how hard I tried, my poor little brain just couldn’t switch off.
If you’ve ever suffered from insomnia you’ll know the frustration. Trying to relax, trying to count backwards in 7s from 1000, trying to read, listening to music, meditating, breathing. You try going to bed earlier. You try blue light blocking glasses. You try CBD oil. You try self hypnosis CDs. You turn off the wifi.
I’d cut out coffee a couple of years earlier, so I’m pretty sure it was out of my system. I rarely drink alcohol, but the insomnia might have driven me to drink. But I already knew that alcohol knocks my sleep off.
Nothing worked much… for at least a year! I could get to sleep for about 3 hours, but then ping awake again. I’d toss and turn, sometimes for hours. If I could get back over to sleep again it was for 30-45 minutes at a time, and that was it. Yes, I was exhausted. Yes, I was irritable.
But my symptoms didn’t stop there either. It was a relentless march into decrepitude. Over the following weeks, months, and even year I had flaring up of old symptoms, and also onset of brand new things I’d never suffered from before. I ended up with the same, or very similar, symptoms as the people in the Lighthouse Project Survey, and then some. I’ll write about them in a future blog post.
How did I feel about being poisoned by gadolinium?
I was DEVASTATED
I felt lost and betrayed. I was furious and disappointed. I feared for my life, and I feared for my health. I could picture a future of debilitation and disability. I imagined that my life would be cut short by cancer, or heart disease, or a stroke, or Alzheimer’s.
I was in pain, my mobility was reduced, and for the first time in my life I was starting to see joint damage permanently restricting my movements. So I started calling it Gadolinium-Induced Petrification Syndrome. The petrification was particularly poignant when I looked at people with NSF and some of the people in the gadolinium support groups. Their tissues slowly hardening as they turn into living, tortured statues.
Fear permeates all of our consciousness when we are cursed with this horrible condition.
What did I do?
I joined gadolinium support groups, and befriended many similarly afflicted people there. Over the past couple of years I have watched the numbers of people in these groups swell into the thousands. All of us crying out for help. All of us in pain. All of us terrified. So many of us are existing from day to day, but not living. Not really.
We’re prescribed pain medications, antidepressants, medications to calm our symptoms.
Many of us have had repeated gadolinium contrast scans in an effort to find the underlying causes of our new symptoms. Many of us are put through a series of tests and preliminary diagnoses because gadolinium toxicity isn’t considered:
- Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig’s disease)
- Psychiatric illness
- Benign Fasciculation Syndrome
- And more
Gadolinium Deposition Disease is a terribly isolating condition
Most of us have to put the pieces together on our own. We have to raise the possibility of gadolinium toxicity with our doctors, and all too often the onset of new symptoms is dismissed as coincidental, or imaginary, or due to some other illness.
Not only do our doctors dismiss us, but many times our family members do too. Sometimes the reason for this is because gadolinium seems to ravage all or our organs. As a result, we present with constellations of symptoms in multiple tissues simultaneously. Apparently it’s inconceivable that one toxic compound could cause multiple symptoms.
We also notice our symptoms evolve over time. Some symptoms improve or resolve, only to be replaced by several more.
Apparently we are only allowed to have one symptom per toxin. Apparently it is also inconceivable that the most potent calcium channel blocker known to man, one that causes inflammation, mitochondrial damage, fibrosis, tissue calcification, and cellular damage, could result in hardening of arteries, or increase the likelihood of strokes, heart attacks, Alzheimer’s, Parkinson’s, cancer, or any other chronic illness.
What’s it really like to feel unheard and not believed?
Not being believed by the people around us makes us feel isolated. Where do you find support if people won’t even admit that you might have been poisoned? When you are already exhausted and down you just don’t have the energy to fight your corner over this. You barely have the energy to explain how awful you feel.
When will good quality research be done?
Researchers don’t know that gadolinium causes a host of cellular problems that can affect any cell in the body. They are understandably reluctant to put their careers on the line, or even come up with a testable theory about the mischief that these contrast agents have the potential to cause. Conflicts of interest obstruct research avenues. There may be some hope in the form of a drug called HOPO. But HOPO is still in early stages of testing, and likely won’t be available to us for several years yet.
We have lost allies and friends to Gadolinium Deposition Disease along the way
Some of us have died on this journey. Some of us have had heart attacks and survived them. Some of us have been diagnosed with cancers, particularly multiple myeloma, the cancer shown to be made so much more aggressive in the lab when exposed to gadolinium contrast. This multiple myeloma research is already a decade old, and yet, to this day, no further research has been done on these incredibly worrying findings.
I will mention one particular gadolinium toxicity warrior. Marcie Shea Jacobs was a lioness. She set up one of the very first gadolinium toxicity support groups on FaceBook. She was there for so many of us when we were trying to find our way. She was kind, unflinching and determined. She predicted her own death. She knew she had severe gadolinium deposition after about a dozen contrast-enhanced MRI scans. She knew her tissues were calcifying and fibrosed. She is sorely missed by all of us who knew her. She was one of our greatest advocates.
What I was searching for in the support groups were success stories, and protocols. I wanted to find that someone had discovered the solution to the gadolinium toxicity problem. Just like everyone else I wanted the unicorn cure.
I was to be disappointed.
People were trying different things. A handful were reporting some improvements in their symptoms, but they were few and far between. Some people had access to iv chelation therapy (gadolinium is removed very inefficiently by standard oral chelating agents).
The reports from people undergoing iv chelation have been mixed. Some have found their symptoms improve after many treatments. Some find this relief is temporary. Some have a flare up of symptoms after iv chelation, but don’t notice any subsequent improvement. Others seem to notice no difference one way or another.
This was all academic to me, because I had no access to iv chelation therapy where I live, and no money to travel elsewhere for it.
How a Gadolinium Deposition Disease survivor gave me hope
There was one major success story, and that was Gena Norris. Gena has spoken in interviews about her own experiences after receiving multiple doses of a gadolinium contrast agent. Always gracious, caring, and compassionate, she talks about how she felt that she was dying, and how she needed immediate help to save her life. Gena is the wife of Chuck Norris. Together they travelled the globe searching out a cure. They used iv chelation, as well as many other therapies and treatments. Gena and Chuck talk about how they spent $2 million over the course of a couple of years on therapies. She was able to eliminate all gadolinium from her urine, and she has her life back. But she and Chuck know that the treatments and expertise that she received are out of the reach of most of the rest of us.
Nevertheless, THIS gave me hope that something could be done.
I became a gadolinium toxicity ninja. I read as much as I could about “free” gadolinium, contrast agents, heavy metal toxicity, general toxicity, mitochondria, wound healing, inflammation, and lots more.
I tried various protocols. Some made my symptoms flare up. Some helped.
I treated my overgrowth of gut microbes on my own. This provided a lot of relief for many symptoms, not limited to only digestive ease.
But in the end I used the knowledge that I had gained from my nutrition and lifestyle coaching, functional medicine conferences, and lots of information I had picked up from ancestral health interviews, talks and presentations.
One pivotal conference that I attended was on the Bredesen Protocol to reverse Alzheimer’s
This may seem irrelevant. However, what Dr Bredesen discovered is that Alzheimer’s is caused by multiple insults to the brain, and that many of these cause metabolic damage, inflammation, and cellular damage.
He discovered that heavy metals and other toxins are an important cause.
He developed a protocol that involved testing for many different underlying causes, and then prescribing individualised management strategies based on these results.
What Dr Bredesen discovered was that, despite Alzheimer’s being considered a progressive condition that barely responds to medications, he could often help patients reverse it.
How did Dr Bredesen manage where drug companies had failed? He:
- Prescribed a real foods, paleo, ketogenic diet alongside lifestyle changes
- Added supplements
- Treated stealth infections
- Reduced inflammation
- Remediated and eliminated heavy metals, moulds and other toxins
- Optimised hormones, nutrients, and trophic factors, and
- Looked for the real root causes and addressed those.
Dr Bredesen has also written an excellent book on his protocol, titled “The End Of Alzheimer’s”. This armed me with some useful information on herbs and mitochondrial support supplements that are helpful in his patients.
Before I was sick I was a consultant paediatrician.
While my conventional medical training didn’t equip me to deal with heavy metal toxicity, I did have to attend advanced paediatric or neonatal life support courses regularly. I reflected on how these clearly instruct us that the most powerful life-saving treatments are natural. So I spent a lot of time reflecting on how things like oxygen, hydration, basic electrolyte balance, sugar, hormones and simple nutrients worked at the cellular level to keep us from dying.
What could a career in conventional paediatrics teach me about how to approach sick people?
Did you know that:
- There is a wealth of information showing that people in intensive care units often have scurvy, severe vitamin D deficiencies, selenium deficiencies, and other nutrient deficiencies?
- An intensive care unit in Norfolk has almost eliminated sepsis deaths by giving patients a combination of high dose vitamin C, vitamin B1 and steroids (the Marik Protocol)?
- The main antidote to paracetamol (acetaminophen) poisoning is an amino acid called n-acetyl cysteine, which supports liver detoxification?
- Giving alcoholics and some other patient groups high dose B vitamins and vitamin C can prevent permanent brain damage?
- Before the development of antiepileptic drugs the original treatment for childhood epilepsy was a very low carbohydrate diet, called a ketogenic diet? Or that the ketogenic diet was just as successful as the drugs that replaced it?
- A whole foods, ketogenic diet has also been proven to be the most effective way to reverse type 2 diabetes, getting people off most of their medications?
- Or that the same diet is being researched as a part of cancer treatment?
The more I thought about it, the more I realised that in conventional medicine we had been so star struck by pharmaceutical companies and their promises to treat symptoms, we had forgotten our basic biochemistry and physiology. And in doing so, we shut the door on the possibility that these and other naturally occurring compounds could be effective at improving outcomes in chronic and acute conditions.
I used my medical training in critical appraisal to pinpoint and research foods and supplements that could help support me at a cellular and subcellular level.
I sought out supplements and foods that could:
- provide neuroprotection,
- boost my metabolism,
- boost elimination pathways,
- support calcium metabolism,
- combat inflammation, and
- support connective tissues.
I researched how BELRAD approached radioactive toxicity in Ukranian children following Chernobyl, and how heavy metal toxicity from Fukushima was managed. I researched which products were being investigated for the remediation of environmental heavy metal pollution, with particular focus on water.
Throughout all of this I collaborated with many other gadolinium sufferers, took notes, and shared ideas. I listened to what people were saying in the gadolinium support groups. I tried to provide support and suggestions where I could.
As a result I created the first all natural protocol targeted specifically at gadolinium deposition disease.
How successful was I?
I have actually done pretty well. I have managed to control most of my symptoms most of the time. I am not cured. When I come off some of my supplements it isn’t long before the symptoms start to creep back. I have to be extremely careful about what I eat, and even more careful about what I don’t eat. I can’t burn the candle at both ends. If I get injured it takes so much longer to heal than it used to. Every day I have to focus on self care. There are no days off. Sometimes it feels like a part time job. It can be pretty all-consuming.
But I have a good quality of life again now. My connective tissues are holding my skeleton together much, much better. I have been able to start working out again, and my strength is probably almost back to where it was before. I am not getting injured as often as I did before either. While injury recovery is slower, at least it’s happening. I feel calm and optimistic. My gut health feels much better. My sleep is improving. I have more energy, and cognitively I feel sharper. In fact most of the time I feel mostly normal.
Yep… life is actually pretty good right now. But I don’t take it for granted.
However, you can prize my supplements from my cold, dead fingers.
I’ve been trying to influence and educate others about Gadolinium Deposition Disease as well
I contacted MPs, other politicians, and the European Medical Authority about both my concerns and the abysmal state of research on gadolinium. The EMA withdrew the contrast that I had received, and acknowledged that there was a paucity of evidence surrounding the safety of gadolinium contrast agents.
But they fell short of recognising that there are people out there with normal kidneys who are suffering from gadolinium toxicity or gadolinium deposition disease. They stated that their actions in withdrawing linear contrast agents were precautionary, but that there is no evidence that gadolinium retention causes harm. Unless you have renal failure… in which case it might kill you.
Which is an interesting way of saying that there is a very alarming lack of good quality research on the long term effects of gadolinium retention. Our pleas for help are falling on hearing impaired ears.
I have been interviewed by The Daily Mail, and Sky News. I am trying to get our story out there. I know that at the top of this page I said I would tell you my story. But Gadolinium-Induced Petrification Syndrome is bigger than me. This is OUR story, and it’s just beginning…
If you need support after a gadolinium contrast, get in touch with me here