Introduction
This is part 1 of a series entitled ‘RAI’, which is short for R.A.I. as ‘Radio Active Iodine’. It entails my story about the medical treatment with RAI. It is about why I got this treatment, and its consequences. All parts of the articles together could very well fit as a chapter in a book. The follow-up articles are about other conclusions that I have been able to draw from my experience with RAI.
Disclaimer: No medical diagnosis or form of treatment can be made with the help of this article. If you have complaints as described, use your common sense at all times and consult a conscious doctor. Nor do I provide medical advice. In a lecture I can share more about my own experiences and opinion.
Alas, the time has come to publish my experience with RAI in a more extensive form. Previously I have written this story for myself several times over the course of two decades. This was due to the structure of the story telling, which has been subject to constant change. It was due to me not fully comprehending the complexity of all matters involved.
Reflective Episode
My experience with RAI had to be seen from many perspectives, thus it was also a quest to define and formulate all related matters correctly. Simultanously I had to live through quite some challenges for such a prolongued time.
After this reflective episode (of around 20 years basically) the time has come to bring my story out in the open, and that moment is now.
My Medical Story
In July 1997 I was diagnosed with an overactive thyroid gland. This is a small organ at the bottom of the neck that lies over the trachea in the form of a mini shield. The doctor called the rapid action of my thyroid ‘hyper-thyroidism’. This word comes from the Ancient Greek word ‘hupér’ which means ‘over’ (in the sense of ‘overflowing’, or ‘too much’), and ‘thyroidism’ from ‘thyreoiedes’, meaning ‘shield shape’. Obviously the Greeks used to compare it with their armor at the time.
The medical term in Latin is ‘Glandula Thyreoidea’, and ‘glandula’ stands for ‘gland’. Since the thyroid gland also resembles a butterfly in shape, the organ is often referred to as butterfly-shaped in appearance.
The Doctor’s Diagnosis
According to the doctor, it turned out to be an auto-immune reaction. Due to certain antibodies present in the blood, the thyroid gland starts to work too quickly. This can make you feel really bad, including too fast of a heartbeat, weight loss, feeling rushed, being agitated quickly, trembling hands (which I only had a little bit in a later stage), and also pain behind the eyes and swelling of the eyelids (due to inflammatory reactions of the eye muscles behind the eye ball). I was prescribed thyroid inhibitor medicines. However, the thyroid gland started working too fast again as soon as I stopped taking the drugs.
Thyroid Ablation
After using this medication for a year and a half, doctors persuaded me to a definitive treatment. This is called ‘thyroid ablation’, a bit of a bizarre name for a medical treatment where the thyroid gets nuked basically. As the matter of fact, the word ablation is not in two of my English dictionaries. Most likely it is a designed fashion word derived from ‘ablaze’ which means burning strongly and uncontrollably, and ‘ablution’ the washing of the hands or body as part of a religious ceremony. It has been mainly used in medicine for the removal of biological tissue, usually by surgery but also by cutting with a laser or electrocautery.
In my case it included the intended destruction of the functioning of an otherwise perfect healthy thyroid gland. In order to do so I had to take a capsule with Radio Active Iodine (RAI) for thyroid ablation. The treatment proposal was completely against my feeling and intuition, and I was not in favor of it at all. However, it was said that continuing with the thyroid inhibitor medication was dangerous because it could alter the blood count. Since there was still limited internet around the year 2000, and I was also unfamiliar with patient associations in America, where I lived at the time (I’m Dutch from the Netherlands), I had no information to consider any other options.
Cheers!
So there I was, I sat somewhat timid on a stool in a small room in a large American hospital in Boston. The Asian MD handed the capsule on a small plate on a tray. This was the capsule with the radio active iodine in it, which I was supposed to swallow. She made sure her arms were stretched, as to stay away from the radiating capsule as far as she could. I’m not sure if she had a lead apron to protect herself, as I can’t remember her clothes anymore, except she was nice looking and kind.
The capsule looked like a vitamin pill, oblong in shape and if I remember well it was two-tone colored. She suggested I should take the capsule, which I had to pick up with my bare hand from the dish and put in my mouth. The doctor gave me a white disposable plastic cup with water to swallow the capsule.
Jokingly I raised it in the air as if to toast, and said ‘Cheers!’. I hoped to give the loaded moment an optimistic twist. I was trusting the doctor here, the promises she’d made for me to get healed, based on the many similar treated patients she or the medical field claimed had experience with succesfully for many years. I felt extremely odd and also scared with an alerted awareness, because I felt something was wrong, but I didn’t know what I was getting lured into, so I proceded.
The Sip
I took the capsule in my mouth and swallowed it with a large gulp of water as the capsule was kind of big. In Dutch language, the oral intake of the capsule with RAI is called ‘The Sip’, because in the past the radio active iodine was given in liquid form. I took a few small sips of water afterwards, as the plastic cup was only filled for 1/3th with water. And that was it.
Next, my then husband, our son and my radiant self went home by T. I felt it burn in my stomach. It turned out to be a bitter pill.
Six To Eight Weeks
The first 6 weeks however, I felt better than ever, which in retrospect was due to the pleasant side effect of a high dose of a prednisone course that I had to take during that time. The prednisone medication was needed to suppress inflammatory responses from the radiation. Prednisone often makes you feel very good, which I didn’t know then. So I thought, ‘Yes, that RAI treatment works perfectly!’ Doctor happy too. The form and dosage of radiation that I had been given lasts for 6 to 8 weeks, decreasing by half every eight days in effect.
Gained a Bit
But then it started. I felt increasingly sick and gained 20 pounds in two months. At first I thought this was because of the high prednisone cure, because an increase in appetite is a side-effect of it. It also increased cortisol level and thus increased fat deposits. Unfortunately, however, the increased weight after stopping prednisone wouldn’t budge in the months and years afterwards, no matter what diet I followed, or how little I ate.
60 Complaints
But the Medical Doctor had not promised me that. After all, I would feel good again and lead a normal life? Well, nothing could be further from the truth. In the years that followed, I adjusted my dose of thyroid hormone replacement every now and then, but that didn’t help much. I spent days, weeks, and months desperately searching the internet and patient forums for information about what could be the matter with me. The months turned into years.
To get an overview, I had written all my symptoms down: I now had more than 60 complaints, several of which alternated, and no doctor could help me. I had an allergy to cow’s milk proteins and soy since birth, accompanied by bronchial asthma and eczema, for which I once lived in an asthma center in Davos for a year, aged 17, after being seriously ill and bedridden for six months. But now, I felt miserable again, but in a completely different way.
Puzzle Pieces
Depicted below is a scinti-scan from someone who received RAI intravenously. The scan is made by Dr. G Boni from the university of Pisa. I found it on the internet ten years after I got ‘treated’ with RAI myself. Here you can see how the thyroid is irradiated, but hey, wait…. other organs as well!
What Organs Are Affected?
The organs that have absorbed the radioactive iodine here, are mostly glands with internal secretion, that assimilate iodine during metabolism. These are: the thyroid gland, the parathyroid glands (are very small), the pituitary gland, the adrenal glands, and organs which produce hormones and/or are covered with a functional layer such as the mucosa layer of the stomach, the esophagus and gallbladder, the epithelium of the duodenum, the pancreas which creates insulin and enzymes for digestion, the intestinal system, the bladder, the sex hormone-producing organs.
According to the analysis of the G. Boni in the image caption, the I-131 radio activity is active for 72 hours, which is 3 days and 3 nights. But does the radiation always leave the body after 72 hours?
Could it End Up Somewhere Else?
I remember very clearly that I had asked my MD if the radiation could end up somewhere else in the body. ‘No,’ she said, ‘It will go through your blood for a moment, but it will all accumulate in your thyroid until it’s destroyed.’
But when I saw that image of the scinti-scan, and the explanation with it, many puzzle pieces suddenly fell into place. The RAI wasn’t certainly flowing through my body ‘for a moment’. The type of radiation I-131 I got, stayed there for at least 3 days and 3 nights, slowly waning over time, the way the scinti scan shows.
Enough Indications
You can imagine that if several glands and organs have slightly diminished function, problems can quickly arise. And that was the case with me, which is why I had anything and everything tested over the years after ‘The Sip’. Hereby test results often deviated from the norm, but were not very worrying for the doctors.
For me, however, those were enough indications, time and time again, that there was more going on. And so they were puzzle pieces that I had discovered myself with the help of several online experts and specialists. Those were mainly fellow patients who themselves had a lack of thyroid- and/or other hormones, such as pituitary- and adrenal hormones. So I learned to analyse through symptoms, and also through having some of the related hormones tested, and other substances (such as B12, vit D etc.).
Personal Injury
Typically, labwork and some measurements were just below the reference value, or close to the lower limit of the reference values. However, one thing I was sure of: thyroid function was completely destroyed.
Hormonal Axes
But the thyroid gland and other glands with internal secretion are part of several ‘hormonal axes’. These are the glands that deliver hormones to the blood that respond to each other through registration and feedback or ‘feedback loops’ from the hypothalamus to the pituitary in the brain to several organs in the body.
They do this by reducing or increasing the release of hormones according to the needs of the body. Radiation can damage this feedback mechanism of all feedback loops of a hormonal axis, or more hormonal axes, as the tissues of glands and organs work less well.
This can be classified as ‘Injury due to radiation to glands with internal secretion, and to digestive organs that use iodine in their metabolic processes, such as the stomach, galbladder, intestines and pancreas.’
In a sense, you could describe the injury as internal burns, which, however, has not only partly burned the surface of glands and organs, but the radiation has also penetrated the tissues deeper because iodine is assimilated by red bloodcells and will go anywhere it is are needed.
And then it depends on how high the radiation dose has been, and how the condition of the body was at the time of administration, e.g. how much natural iodine was in the tissues present already, because this influences the effect of RAI. In hindsight I must have been deficient in iodine, as I had reduced my salt intake at the time.
More Symptoms
So after my ‘Sip’ -in this case me swallowing the radio active capsule with a gulp of water-, I got lots of symptoms, more than sixty. Among those were gaining weight (as described before), but also symptoms like mild hair loss, joint- and muscle pains and muscle weakness, and more. I will name a few.
Cartilage and Bones
For example, I got problems with my knees, back and neck (cartilage and bone building). I’ve developed a light but noticeable scoliosis over time and sometimes I experience backpain. This might have to do with low growth hormone (= a pituitary hormone), which labwork showed a few years after the radiation treatment.
It can also have to do with me not having sufficient calcitonin (a hormone the thyroid produces as well) and parathormone (a hormone produced by the parathyroid glands) which were also affected by the radiation. It can also be a hereditary factor, as my tall father had a light scolioses, but I don’t think so as I always had a very straight posture (at a young age I used to dance classical ballet a lot, and jazz and pantomime). It might also have to do with all factors together.
Heavy Periods
I also had heavy periods every month, from which I could thankfully conclude that my pituitary gland was still working properly, because this tiny organ also regulates the menstrual cycle. But my pituitary is probably partly functioning, because I was diagnosed with a low growth hormone later on, which is a hormone constructed in another part of the pituitary, which has a different type of tissue than the part that produces the sexhormones, probably more vulnerable to radiation.
Due to the severe bleeding with my periods (which as a side effect can also damage the pituitary), I had low Iron Hemoglobin blood count for a long time. My Ferritin values, which is storage Iron, were far too low (around 14). Once it was so low that the GP called me for a blood transfusion because of a ferritin level of less than <2.
I remember crawling over the floor from my living room to the kitchen that week. My son who was a toddler at the time had asked for a glass of lemonade. But for a moment I no longer had the strength to walk! My son who saw me crawling said, ‘Mum, you are acting weird.’ So I thought (with brainfog and all): ‘I’ve got to call my doctor again.’ (I didn’t take the blood transfusion though).
Other Complaints
Then, according to the gyneacologist, there was nothing wrong with the uterus. But the MD could not explain the cause of the long and heavy blood loss during menstruation either. I found out many years later it was due to low progesterone and probably other factors.
Anemia and Iron
For all those 24 years of testing (from 1999 to 2023), I always had low iron, low MCV (Mean Corpuscular Volume = the size or volume of the red blood cells = erytrocytes), low MCH = Mean Corpuscular Hemoglobin, Hematocrit (volume of red blood cells), etcetera.
I took iron bisglycinate tablets for years, self-financed, because the iron tablets that the doctor prescribed gave too many side effects, those aren’t good for the liver either.
After years of misery due to anemia, both caused by the RAI treatment and heavy menstruating which was also caused by RAI, a low amount of progesterone released in the uterus through an IUD turned out to be a solution. Unfortunately, I couldn’t handle other forms of oral synthetic hormonal treatment such as taking the daily ordinary birthcontrol pills as medication, to reduce menstrual bleeding (thus not for its actual purpose). No matter how small the amount of hormones in it, it would make me depressed.
Synthetic Progesterone, Estrogen and fillers
Tried them all, been there, done that. I feel much better on natural hormones! Must add though that I can’t handle synthetic chemicals as fillers in natural hormone supplements either. Too bad I spend so much money on it. But taking medication was all trial and error anyway, sometimes something worked, and then I would stick to that.
Heart Complaints
Another complaint that arose over time after treatment with RAI is a troubled heart that has had a lot to endure: fast beating (90 to 120 p/m, but sometimes also on the slow side (60 to 65), or irregular, regardless of whether my thyroid values are ‘hypo’ (too low), ‘euthyroid’ (balanced) or ‘hyper’ (too high). Over time I found out it was due to low potassium and sodium. Suppletion with these helps a lot, but of course I need to be optimally treated with thyroid hormones, otherwise nothing works.
Buddha Belly
My belly was also swollen due to an increase in belly fat and to this day it still feels slightly painful and tense. The tissue on my stomach and thighs and breasts (2nd half of the cycle ‘Masteopathy’) could hurt a little when touched and slightly pressed, but there have been a few episodes where it was really very painful.
Eye Complaints
I also suffered from pressure behind my eyes. That is an eye condition that can occur with both an underactive- but more often an overactive thyroid gland. And it occurs quite often after treatment with radioactive iodine, due to the sudden release of all stored thyroid hormones at once in the bloodstream. This can result in severe bulging of the eyes, a very difficult and challenging condition to deal with, for which multiple surgeries are needed. (thankfully I didn’t have them).
Two Booklets
I even wrote two brochure booklets about this thyroid condition and the thyroid eye disease, in collaboration with a professor endocrinologist and specialist ophthalmologist, which was published by a thyroid patient association. I was a board member of this organization with the portfolio PR and Information. I did this for almost four years. From this position I met and spoke to several people who unfortunately developed severe hypothyroidism after RAI, of which some also had these serious eye complaints, most of them especially after treatment with radiation. This meant that they had to undergo several major surgical operations afterwards. This Thyroid Eye Disease (TED) is a very serious condition with deep suffering involved.
So Miserable
I was also sensitive to bright light and shrill noises, and my skin became very dry, often with chapping in my fingers and heels (occasionally bleeding), which hurts when walking. Often I had disturbed nail growth with ridges or crumbling nails. I was often dizzy, light-headed, had hypoglycemias every day (and therefore had to consume sugar or carbohydrates frequently), and sometimes I still had brainfog and forgetfulness. And last but not least I suffered from a chronical total lack of energy.
Total Lack of Energy
Due to my weakening and lack of physical energy, simple activities are often tough, such as (long distances) cycling or hiking, as well as household chores or gardening. It took a long time to recover from exercise, ranging from one day to three days, oftentimes me being completely exhausted. I have then to rest on the sofa till my energy returns.
Sometimes my lack of energy also results in forgetfulness, poor concentration or memory loss, for example, forgetting an appointment once, or not being able to ‘hold’ information properly, as I call it. This is usually due to hypoglycemia, the cells aren’t getting enough fuel to function.
I have often found myself hanging in my chair e.g. behind my computer, or laying on the sofa, because I do not experience enough energy to keep me sitting or standing straight.
Muscle Strain
Since the RAI treatment, I always have muscle strains or fibromyalgia, even without exertion. It feels as if I have run a marathon for hours, or did intensive aerobics or weight lifting without any training beforehand. Walking the stairs has always been a strenuous exercise after I took the RAI-capsule, due to the muscles in my upper legs feeling very weak, sore and have a lack of strength therein. Even washing my hair in the shower has often been tiring because I had to keep my arms up, which I therefore had to let them hang in between while showering, to regain muscle strength.
Test Methods?
My low blood sugars usually suggested low cortisol and/or insulin resistance and/or low sugar uptake due to low MCV (volume of the red blood cells). If the thyroid function is too low, the adrenal function also goes down, which can also be related to those complaints. This is also stated on the package inserts of any thyroid replacement hormone, and doctors should know this.
By the way, in labwork results, my thyroid levels usually showed a ‘normal’ euthyroid state. However, the amount of thyroid hormone in the blood serum is measured, but not the absorption or action of it in the cells. (very important this).
Not Sufficient
Tests and labwork are often not sufficient, which has also been internationally confirmed by many thyroid patients. It has been scientifically substantiated for a long time by all kinds of doctors, patient groups and individuals, internationally for more than two decades now.
This has not yet led to better forms of treatment internationally, and unfortunately, not even through the writing of scientifically substantiated books and the signing of petitions by many patients (I estimate hundreds of thousands, probably even up to a million), and the conduct of legal proceedings by a few. Now, who or what will help for this vast suffering group then? Say it.
All Time Low
An absolute low point for me was when an MD called it ‘circumstantial evidence’ when my ‘free cortisol’ was way below the reference values. (With this my aldosterone was too high). These were previous test results from a private doctor’s office with international standards, and for whatever reason not taken seriously by another MD in a hospital when asking for a 2nd opinion to get my untreated complex condition officially acknowledged.
Alternative Lifesaver
However, if one walks around like this undiagnosed, and the cortisol (corticosteroid) would even go lower, there is a big chance that one will end up under the green sods within 24 hours. Thus my complaints were simply denied by medical doctors in hospitals (I’ve dealt with quite a lot of them), even though some of the labwork results were skewed, and often turned out differently, sometimes far below the reference range, but usually just slightly below the norm. So it turned out afterwards, that my adrenal glands were functioning less (including low cortisol, low aldosterone, low testosterone -which women have too!- and low DHEA, etcetera)
Two Different Causes
The explanation I have myself, is that very little is known about reduced functioning of the adrenals and other glands and organs due to injury from radio active iodine. There is also little known about the reduced functions of the several replacement thyroid hormones that are out there in the field, both the synthetic and natural versions.
These are two different causes for non succesful treatments, and for me it works double, because I have both. But measurements for this are simply not included as standard in the diagnostic protocols, nor in the treatment protocols post RAI. Hard to believe, but true. There is no medical protocol for RAI induced damage to glands and organs.
Throat Complaints
Unfortunately, the last 12 years or so, I can no longer sing well, while I liked to sing for hobby as a soprano and mezzo-soprano in a choir. It is as if my vocal cords now scratch when I want to get higher tones. But I also no longer sound tonal. I miss it enormously that I can no longer sing. I also sometimes have swallowing problems, or I quickly choke on eating or drinking, sometimes in my own saliva. My tongue often hurt when I was eating (especially after citrus fruits) and looked like the so-called red ‘beefy tongue’ which is a result of too low B12. (but eating red meat did not help).
I also had slight notches with a white border on the sides of my tongue, the so-called ‘tooth indents’, which according to a hormone specialist had to do with too low aldosterone, which, like cortisol, is also an adrenal hormone.
Tinnitus Ears
A high pitch tone tinnitus in my right ear is another of those debilitating symptoms, which I’ve now had for the past 11 years (editing this article once more in 2023). My ear drum was damaged as a result of medication for my ears which I got for inflammation after the infected liquid was succesfully removed by another MD (ENT specialist). I had to put a few drops of this medication in my affected ear and it burned like hell. Something wrong with that, but I continued with it for a while because the doctor had prescribed it. Blimey.
The inflammation was caused by being temporarily under-dosed with thyroid hormone, which resulted in edema. Edema is swelling of tissues due to increased fluids. It was also in my ears, like I had dived in a swimming pool and my ears filled up with water.
Mild Tinnitus
Sometimes it also feels like I have mild tinnitus in my left ear. This might be because tinnitus can also be caused by other various factors, including low iron, low thyroid hormone and low potassium, which I have all. Sometimes the tinnitus was really bad, while that was going on I have also had episodes with poor sleep. Once I didn’t sleep for three nights in a row, which was also due to a prolonged accompanying high heart rate (the latter I went through for months). This can occur with being severely underdosed on thyroid hormone (which many patients and some doctors do not know). Then Potassium and Magnesium will run down and oral suppletion can give relief with that. However, the underlying hypo thyroid and hypo adrenal function need to be addressed.
New Fillers
In time, I managed to find out by intensively searching online, that it was because of new fillers in the medication for me back then. These fillers absorb the thyroid hormone when they get moisturized (by the saliva and digestive fluids). But not being able to distract the hormones from the filler was due to me having less gastrointestinal juices, I concluded afterwards.
Here’s the reason why: The stomac is the second organ after the thyroid, to radiate the longest after RAI has been administered. So my body has less capacity to disconnect the thyroid hormone from the fillers in the tablets. Bizarre, but true. And then the hypothyroidism becomes a dangerously sliding downward scale. It is dangerous, because initially one notices the hypothyroid symptoms, but since I had so many while the labwork was still fine, I assumed it was because of the weather, or low iron or low cortisol or whatever.
Further down this article you can read about my NDE experiences I got as a result of it.
Hypo or Hyper?
In a sense I had a hypo- and hyper condition at the same time. And sometimes one hormonal deficiency was masked by another hormonal deficiency, so that diagnosis based on symptoms is only for an extremely skilled doctor, who uses special diagnostic methods of the functioning of hormones and the hormonal axes, and has made this his or her life’s work.
Summary of Complaints
Above is just a selection from a long list of complaints that I did not have before taking RAI. I could really fill a book with it. Basically, I felt much sicker than before the RAI treatment in my hyper-thyroid phase, although that was certainly no fun either. In fact, I was so hyper that my doctor advised against an international flight at the time.
For years in my hypo phase after RAI, I experimented with various replacement hormones and substances for the thyroid gland and other organs. I visited four different hospitals and four alternative doctors and a dietician (the alternative doctors and dietician do not reimburse all). I received supplementation for the other organs, such as for my adrenal glands, years of B12 injections (which did not help, because in retrospect my body was unable to convert that form of B12), and I bought myself many dietary supplements such as enzymes, B vitamins, iron, zinc, selenium, magnesium, calcium, etc. etc.
Legal Advice
And oh well, I had also obtained legal advice, but to no avail, because ten years after the date of a medical treatment it is no longer legally valid if you sue a doctor or authority for that. In my case that would have been very difficult anyway, because I had medical treatments on two different continents. But I don’t think that legal rule is correct. In this case, it requires an intensive study to understand the effects of RAI. And there was no proper informed consent given whatsoever.
And although I had a suspicion for those ten years, that besides my thyroid also other organs were affected, I had no evidence for the true cause of my complaints, besides slightly deviating labwork, sometimes far below the norm. But they were usually conveniently written off by all doctors as symptoms of an auto-immune disease. Well, try to convince a cat! Me no more!!!
Is There Proof?
By the way, to actually be able to prove personal injury by RAI, I reckon in hindsight, one has to get a scintiscan for the first 3 days and 3 nights (72 hours) after oral intake or intravenous injection, until the radiation is no longer visible on the scan. This is how you can prove how the radiation has distributed throughout your body, and for what strength and length of time. Another way is to closely monitor symptoms prior and after the treatment for many months and years, which would be great for empirical evidence and research as well.
Fillers in Medication
Incidentally, I got sick several times because of altered fillers in thyroid medications, and supplements (such as microcrystalline cellulose – E640. This is woodpulp, micronized in a laboratiorium, which I’ve read online can also enter the bloodcells. Once in they might not get out that easily, which leads to swelling of upper tighs and other tissues).
But only in hindsight did I learn to recognize the dangerous slowly downward sliding scale of the hypothyroidism, which can lead to death when not treated. I did take 8 different variants and combinations of thyroid medications over the years, because I didn’t know what the cause of them not properly working was.
Was it me, was it the quality of the medication, such as the freshness (e.g. how long have they been on the shelves?), or the quality of the fillers, or a combination of it all? I’ve spend weeks and months and years online searching! It has happened that the manufacturer suddenly changed the fillers without notice, which again gave me an adrenal crisis. By the way, multiple E-numbers that end up in our food nowadays, and in many supplements, can also cause such complaints. Know what you eat so to speak.
B12, enzymes, conversion, low pH etc.
Anyway, because my stomach was also injured, I have a B12 deficiency for the rest of my life. When tested, I also found myself frequently having a low pH in blood and urine, having seriously low vit D levels, low magnesium, calcium, enzymatic function, etc, etc. And, as stated previously: my stomac produces lesser gastric juices to properly digest the cellulose filler in the thyroid hormone medication and other supplementation tablets.
Uptake and Conversion
Thus I can’t detach it from the thyroid hormone, causing the effect of the drug to decrease. Nevertheless, labwork shows perfect or even high values! (By the way, this microcrystalline cellulose is designed in laboratories). And another filler based on calcium is also very bad since it absorbs the thyroid-hormone as well. Most doctors and pharmacists KNOW thyroid medication has to be taken seperatly from calcium supplements. Then why do they use it as a filler? I also had problems converting the thyroid medication, which can be related to many other factors as well (liver function, gallbladder issues, low selenium, low iron, low enzymatic functioning, low or no T3, low cortisol, low potassium, etc.).
Low Finances
Because I was no longer able to work 40 hours a week, and had no partner with an income, nor savings, I was in a low financial status. And unfortunately most of the medication and supplements that made me feel better were not reimbursed by my health insurance fund. These include a good quality Magnesium, Calcium, Vitamin B12 tablets in easily absorbable form (methyl, adenosyl), Vitamin D3, Potassium, Enzymes, natural Progesterone, Estrogen, and so on. I have to take these for the rest of my life probably, because my body isn’t obviously generating or processing enough of it.
Several Sizes Wardrobes
In the attic there have been 30 bags for years with nice clothes in all sizes ranging from size 36 to 52! (The latter 50 sizes only when I was on a high dosage of prednisolone). Every time another size came in, I was forced to replace the entire wardrobe. This turned out to be very expensive, especially because we have four different seasons in the Netherlands (which can vary from cold winters to hot summers and everything in between).
It includes: New jackets (summer jacket, winter jacket and rain jacket), also for: new pants, blouses, sweaters, t-shirts, underwear and bras and even new boots in the last sizes. In short, my wardrobe had to be renewed time and time again. Added to this was spending extra money to purchase life-saving medicines and supplements that were not prescribed because of a refusing doctor and/or were not reimbursed by the health insurance fund. (other means, such as asthma medication did).
Damage Claim?
All that severely limited me financially. I once made a calculation and think that I have certainly suffered €100.000,- of damage in the 21 years after this medical treatment with RAI. Not sure if this includes the emotional damage it has caused me! (I’ve lost the list with the calculation on it). However, in this way I have lived below the poverty line for 21 years, without anyone having any idea (except for my immediate family and friends).
Thanks to my mother’s two decades of help, I managed to survive. I have often been able to borrow money from her to pay my fixed costs. And I am extremely thankful for having food, a wonderful house with yard, heating, and decent clothing all those years, something that used to be a guarantee if one lives in the Netherlands (the small country that I’m born), but not so in many other parts of the world.
Natural Beauty
True beauty is on the inside, the expression says, but it’s certainly no fun when one’s own natural beauty, including posture and facial expression (for instance weight gain, eyes slightly bulging, puffy face, brittle hair), changes to the detriment. That is perhaps what I worried about most all these years, and every day, because if you are not feeling well, and you also look that way, it does not really promote self-confidence.
Also physically from the inside, organs might be more fat as well, which is not a healthy thing. But I could not help it, the fat burning just didn’t work properly!
The Outside World
My illness, or post radiation sickness as we may call it, is usually not visible to the outside world, because I can still cycle (on an e-bike now), and walk. But often I have to recover on the couch for a few hours after exercise, and that’s all the lost hours, days, weeks, months, and years that outsiders have never seen, just those who lived in my house. I can come across as cheerful, happy and energetic, which I am at that moment, and even do physical work such as gardening on good days, and then collapse completely when I return home. Sometimes I have to recover two or three days after heavier physical exercise.
Incomplete Metabolism
This also happens after eating heavier food (large proteïns, processed fats, starchy starches), that I can no longer digest on a microscopic level. Apparently my body is unable to regenerate the consumed substances for energy production as quickly as is the case under normal conditions. It seems to be less able to break the food down to phytonutrients or something like that. All this leads to poor processing and reduced absorption of nutrients. Last year I also had eight gallstone colics and that is no fun! Hence I appear to have a slightly decreased bile function (only small gallstones), which also leads to a less strong digestion.
Mental and Psychological Impact
The years of struggle in dealing with the consequenes of RAI, has certainly had an impact on me. I had to learn mentally and psychologically to take time for myself to deal with this injury and the lack of medical and financial help. It has also been a process of mourning for the loss of my health and the quality of my life for the past 24 years, a period that is supposed to be the best years of an adult life, where you can experience 100% power of your life. Well, oftentimes it felt like 60%, and there were many episodes where it was even lower.
HYPOCHONDRIAC OR WHAT?
In addition, I also had to deal with a lot of adversity in the social emotional field, due to certain events in my life, such as a divorce. When you are already sick, it requires even more strength than usual.
It was also usually painful when I expressed my sadness about my condition (when I couldn’t pretend to be okay), or informed others about my health status. I often came across as a complaining person, or like a hypochondriac, even more so when they saw me cycling or gardening afterwards. They couldn’t see the muscle pain and total weakness I was going through while performing a bit of physical labor, nor the severe tinnitus in my ear, nor the other debilitating 57 symptoms.
My NDE’s
Interestingly, due to my illness I had several ‘Near Death Experiences’ (NDE’s), which of course also had an impact. The first one I had though, was not RAI related. This was when I was 16 years of age, and had suffered from prolongued asthma and a shortage of breath. I was bedridden for more than half a year and almost died. I knew this because I was completely exhausted due to the extreme coughing which led to a shortage of breath, which led to my brains not getting enough oxygen. This felt like a heavy brick pounding in my head with the pulses of my heart and the severe coughing. The muscles in my torso and back were also stressed with every deep breathing and were extremely sore and cramped.
As my spirit left my body, I ‘knew’ myself laying in the bed while I was with my back against the ceiling. After I realised this, I came back to my body with a shock. The next week or so someone rang our door to collect money for an ‘Asthma Fund’. This lady was a boardmember of the society for Asthma patients at the time (or something along those lines). Because of her I was finally sent to Davos in Switserland to recover in an asthma sanatorium. While still in the Netherlands I was diagnosed at the same time with an allergy for dairy and soy by a naturopath, and got a special diet. Those two events, the diet prescribed by the Naturopath and the pristine air of the high altitude mountains in Davos helped me to recover within a year.
The Skippy Ball
The 2nd and 3th NDE’s were RAI related. The 2nd were several experiences which are a bit complex to describe, so I won’t for now. The night of my 3th NDE I visited the hospital at the nightly doctor’s office. My mum and brother went with me for they were very concerned for my condition and I had asked their help. My brother brought us with his car.
I had several serious complaints, and labwork was drawn in the emergency room. But they couldn’t find anything, my thyroid levels were fine. I asked them to test my cortisol and aldosterone levels, as I told them I also had adrenal issues. But they didn’t want to test me for that, neither when I begged them to test me! I’m still mind boggled by this, as every doctor should know that thyroid and adrenal functions are related. Previously I was hunched over on the doctor’s table because I had no energy left to sit up.
I was sent home despite me explaining I had several weeks of rapid heartbeat (90 to 120 beats per minute) and being completely exhausted. I couldn’t sleep for three nights in a row (what a nightmare that is!). I told them also I had to drink sugary drinks to keep my blood-glucose levels up. I even asked the assistent in the emergency room to get me a few cups of tea and asked him to bring me about 10 sugar sachets with it. I just couldn’t cope with the low blood glucose due to low cortisol. But after a few hours, they let me go home in the middle of the night.
Then at home again early in the morning, went back to bed at 4am, and got the 3th NDE.
I floated over the ocean! My body was draped over a skippy ball, with my belly on top of the ball and around the ball my head, arms and legs hanging downwards. This was because I had no more strength to lift them up. All energy had left me, as with complete exhaustion.
Shimmering Diamonds
The ocean looked like it was lighting up, as if every drop of water was a shimmering diamond. I felt incredibly relieved of all pain and exhaustion! I couldn’t believe how I was regaining energy so fast, and even recovering further by the seconds, almost with lightspeed I would now say in hindsight. I was amazed by the beautiful appearance of the sky around me and the ocean.
I was told it is the ‘life’s ocean’, and I apparently experienced it as very normal having someone informing me about it. I enjoyed floating further, and floated and floated, amazingly surprised by my now much better circumstances.
I could now also lift up my head, and in the far distance in front of me, I noticed some sort of a thick wall. It looked white and light came through it, but it was semi transparent, as if it were filled with some kind of fluid-like mist.
I continued floating in its direction, and was still feeling better and better with every second.
But then I was informed that if I would continue, I couldn’t come back. I was pondering on that information. I certainly wanted to continue feeling so awesome. I hadn’t felt this great my entire life! But I also wondered something else. Where was I going actually? I floated further, still being draped on this skippy ball. Oh I felt so great! Then I thought about not being able to return, and that seemed a bit awkward to me. Where did I have to return to?
Enough is enough!
When I looked back over my shoulder I saw the shore line in the far distance, and there were two men sitting on a terrace. It was some kind of a seafront promenade so to speak, and they were beckoning me back. I didn’t know these men.
Then I thought of my loved ones, who live behind the shore. As sick as I was, I couldn’t care less to leave them all behind, there was no way I could continue living like this. I thought about my mum, that it would be very tough for her. But since she was seriously ill at the time, I didn’t expect her to live long anyway (she actually lived many years after this experience). But I’ve had so many ailments for such prolongued time, that enough was enough for me!
I had to Decide
And then I realised there was no way I could leave my 15 year old son, a child at that age certainly needs his parents. For more than 10 years he was raised by me as a single mother. He would be left alone without me. So I decided to not continue further floating over the enlightend ocean -although every cell in my body wanted to-, as I knew I would soon approach the veil between the seen and unseen world. And if I would pass that veil, if I would float through this thick white misty wall that I had seen, then there was no return for me. It took all of my will power to stop myself floating over this shimmering ocean filled with its amazing lively energy, which made me feel soooo good, enjoying the sight and experience of it all.
Then I was told that when coming back, I would again feel all the pain and exhaustion in my body, including the ongoing high heartrate of 120 beats per minute. But I was informed that I would get help and things would get better.
Then I came back in my body, and within moments all the pain and exhaustion came back, even more severe. I despaired, but somehow fell asleep for one or two hours or so (after three sleepless nights!). The next morning I was called unexpectedly from abroad at 10 am by my private doctor that I had visited 5 days prior. He shared with me that some of my labwork was completely out of whack, and that I was in danger. I said: Yeah, I’ve noticed! He sent a prescription by fax to the nearest pharmacy the same day. This saved my life.
In the days after this, the medication gave some relief, it was a corticosteroid, but the symptoms persisted. And I still didn’t know what was the cause of it. I decided to go searching on the net once more, and thus found out through online thyroid patient fora that the thyroid medication I was using had a new filler, of which I was not informed by the pharmacy. This filler is microcrystalline cellulose. It did bind the thyroid hormone (which is microscopically small) to the filler, it was absorbed by it, instead of releasing it in my system.
The reason for this can be me having less stomac acid (radiation of my stomac, see scinti scan) so my stomac couldn’t digest it properly. It might explain why there was sufficient thyroid hormone in my blood, but it wasn’t converted into the active free thyroid hormone and not being absorbed in my cells. In these cases adrenal function goes down as well, and down it went. Interestingly, the labwork showed my cortisol level was in normal range, but my free-cortisol was far below and dangerously so. This has teached me, and should teach all doctors, that the free thyroid hormones and the free adrenal hormones are the most important to test!!! At ALL times! And synthetic T3 suppletion might be great for emergency situations like this as well, for someone who has no thyroid function at all, like 25 mcg T3, 3 times a day.
So said, because of my chronic illness, and all my experiences with it, on the one hand I am constantly aware of the finite nature of Earthly life, on the other hand I have been able to find comfort in those NDE experiences themselves. Now that I have decided to bring this story out, it also gives me satisfaction in a sense, because it has also given me many insights, which I would like to share with the world. Because…. is there more to it?
Is There More To It?
Yes. There is. For example, I now see much more of the danger of nuclear energy than the average person, because I myself have experienced what a little bit of nuclear waste can do to you. Because that is what the radio-active iodine is: nuclear fission waste. Hence I want to warn every patient to not get injected with it or consume it orally, and warn doctors to stop these barbaric medical treatments, as seriously, non of them doctors has had any clue as to what they were doing.
Apologies?
Which reminds me to inform you that not one single medical doctor (and I’ve met many) in the last 25 years (right now editing this article in 2024), has ever apologized to me for the failure of the medical treatment and the medical system they represent, and the serious harm it has caused, nor for the lack of a proper medical protocol post RAI for treating patients with internal injury from radiation. However, all of them have earned a good salary over the years with ‘helping’ me with my ongoing debilitating symptoms. Yeah, right.
I will continue with this in RAI part 2, which is technical a bit. But if you’ve already read it up to here… (heheheh).
Next:
RAI 1 – MY STORY
CONTINUE READING:
RAI 2 – WHAT IS IT?
RAI 3 – NUCLEAR ENERGY
Back to MENU
©2024 | Margreet Wilschut
www.margreetotto.net
Summer 2019, by a very curious coincidence, the sun just shone on my camera, or watch strap, at the time of taking this photo, reflecting it on the area in my neck at the site of the thyroid gland. You would almost think that this is still radio active … But that is not possible 21 years later. Maybe such a phenomenon is just a little miracle?