TLDR: Sesame Seed allergy led to symptomatic gamma tocopherol (E) deficiency, which weakened the immune system, contributing to oral infection and pericarditis, then possible c. diff infection after aggressive antibiotic treatment. C. Diff infection of the gut further impaired nutrient intake, which contributed to Vitamin D deficiencies and possibly others. I need your help to find out what I'm at risk for, what my optimal path to recovery is, and how to prevent this from happening to others in the future, because it definitely could happen.
For reference, I'm a male in my early 30's. Average height, never been overweight, but diet has never been very good.
I'm quite troubled here, and my doctors do not have much knowledge about this problem and therefore aren't giving me many reassurances. I've had to rely on my own studying of the literature to learn the possible effects of this. But there are few concrete studies done on the clinical effects of gamma tocopherol. Here's one of the few clinical studies I could find, which in my opinion provides evidence that gamma tocopherol is likely necessary. https://www.ncbi.nlm...ubmed/24075893/
As many are aware, alpha tocopherol is the active ingredient in standard Vitamin E supplements. It's also established that alpha tocopherol displaces gamma tocopherol from the tissues. However, this is usually no cause for alarm or prioritization of study by the medical community, because gamma tocopherol is found in many foods, especially in America.
But what if you happen to have an allergy? That's exactly what happened to me. In 2012, an allergy test (performed by an allergy clinic in the US) revealed my allergies to sesame seeds, peanuts, pistachios, almonds, and a number of types of beans. This caused a number of unpleasant GI symptoms and headaches, depending on the food. Sesame seeds were especially unpleasant, so I avoided those most diligently.
During most of 2018 I suffered a career burnout and depression, and financial ruin. I had significant periods of time involving skipped meals, unhealthy meals, dehydration, insomnia, and overheating (it's hot where I live).
At some point during this (March 2018) I went to the ER with chest pain, and a very arrogant doctor refused to do imaging. I was insistent on a CT scan. He reluctantly did it. It showed pericardial effusion. ER doc had the nerve not to even face me afterward, and sent an orderly in to discharge me with instructions to take tylenol. They didn't inform me about the test results, but I had managed to get a look at the report anyway. I saw the doctor goofing off in the background, clearly not busy. Apparently his shift was ending. I was furious to see this while at the same time the orderly didn't have any answers to my questions about this report, and being told the CT scan (which I fought tooth and nail with the doctor to get ordered), was "normal" after being in the ER all night in fear for my life. I knew what a pericardial effusion was, and it definitely was not normal. So I demanded to talk to someone else, apparently too agitated by this point. They came back with no less than *four* uniformed security, who made me get dressed in front of all of them, and made me leave and go home to my elderly housemate without having the opportunity to wash my hands. There was a flu epidemic going on at the hospital, with warning signs posted everywhere, so I also had an increased risk of contracting this flu and spreading it to my elderly housemate. It might have been deadly to me had I contracted the flu that day, because I later found out from a cardiologist that the pericardial effusion had a "99% chance of being caused by an infection of the outer heart tissue".
I did snag a low quality video recording of the hospital incident and recorded (legal in my state) many follow-up phone calls with the hospital, who still refused to provide me any information about my condition. I asked my mother to pursue legal action if the unthinkable happened to me as a result of this. I probably wouldn't turn down a lawyer if they got in touch with me to pursue a case, but my priority has been my health and I haven't wanted to take resources away from that.
This experience made me not want to go to the doctor ever again. So I didn't. For quite awhile. But after two months (the quickest I could do thanks to state medicaid) I did see a cardiologist to get an echocardiogram, which by then was normal and showed no pericardial effusion. The cardiologist said that there was a 99% chance that this was an infection that had spread to the outer tissues of the heart, and had resolved by the time I got the echo.
By the end of 2018 I was experiencing a high amount of fatigue, sometimes sleeping 16 hours in a day. I was prescribed psych meds, and it was not a smooth path to stability but eventually this period ended. By mid 2019 I got my career back on track. But I was now experiencing significant physical problems.
These symptoms included: peripheral neuropathy, facial numbness, circulation problems, diarrhea, light colored stool (yellow to grey, lasting months), migraines, skin rashes (including a cellulitis diagnosis recently), tiny amounts of blood seeping through the skin when pinching skin, bone pain, muscle weakness, some loss of coordination (intermittent), occasional blurred vision, tinnitus, occasional palpitations (when getting into bed or first waking up) swollen lymph nodes, and an apparent weakened immune system. My initial suspicion was lack of proper bloodflow to the basilar artery, but MRA of the brain and CTA of chest was okay.
Given that hypothyroidism runs in my family, a doctor checked my TSH level (January of 2019), which was elevated (around 8.0). So I started 50 mcg of levothyroxine. The only symptom this improved was the fatigue, but if it were not for fixing the fatigue, I would not have had the strength to continue my investigation and make further progress.
Imaging and procedural diagnostics included: MRI and MRA of the brain, CTA of the heart and aorta, EEG and 3-day EEG, EMG of arms (test for carpal tunnel), ultrasounds of subclavian arteries and veins. Lumbar and cervical spine MRI. Lumbar MRI showed tiny annular tear at L5-S1, Spinal stenosis in L5-S1, and three bulging discs, L5-S1, L4-L5, L3-L4. The latter two were very minor. Neurologist said that no nerve impingement was happening from any of these, and so it wouldn't explain any leg related symptoms.
Of these tests, the only abnormal one was the subclavian artery ultrasound, which showed significantly reduced arterial velocity in the left subclavian artery with the left arm raised above head. At the time, I had only been having neuropathy in my left hand. My right foot also had some of it, but I thought it was due to the lumbar disc issue, even though the neurologist didn't think it was the case. So the diagnosis was Arterial Thoracic Outlet Syndrome, which is quite serious.
I was scheduled for an CT arteriogram, an invasive procedure with some risks, to be performed by a vascular surgeon. Two weeks later, I arrive for the procedure and go through all pre-op, but I ask to speak with the surgeon first. I had something to report: The numbness was now affecting both of my hands and both of my feet/legs. The surgeon moved my arm around while checking the pulse, and also checked the pulse in my feet. He said that the arteriogram is probably not going to show anything, and that it wasn't worth the risk. Test was cancelled. I was quite relieved, actually, as I was concerned about the likelihood that I'm at high risk of blood clots given the previous year of onslaught on my body, and existing blood clots are a main factor in deaths from this type of procedure.
I knew I had a likely vitamin D deficiency. As it is too hot to go out in the sun here, and because I've had Vitamin D deficiencies before, I asked my new primary doctor (yay, no more medicaid) for a vitamin D test. Vitamin D was deficient, but not the worst I'd ever had. Levels were at 24 ng/mL, and a "normal" amount is 30+, but you generally want higher than 40. The problem here is that I'd already been taking lots of Vitamin D supplements. Like 10000 IU/day. Not consistently, but enough to where I was concerned that my levels were WAY low for quite a long time.
So I asked for a bone density test. The results of the DEXA scan (June 18 2019) showed the following Z scores and bone mineral densities:
Right femoral neck: -2.3 (0.7 x 5g cm2)
Right total hip: -2.0 (0.803 g/cm2)
Lumbar Spine: -1.7 (1.018 g/cm2)
Right Forearm: -1.1 (0.884 g/cm2)
Conclusion: Osteopenia. "Fracture risk is high."
A Z-score of -2.5 or lower is considered Osteoporosis. I'm quite young (32).
My mother also had osteoporosis while young, so I'm waiting for genetic testing results via Nebula Genomics to see if there's Osteogenesis Imperfecta or Marfan Syndrome, or something else. But we still don't know if this is true osteopenia or whether it's osteomalacia, which a DEXA scan cannot differentiate. I was referred to an endocrinologist, and was able to see that specialist quickly, but was unable to help me much other than to recommend testosterone levels checked and genetic testing (which I already planned to do by this point). Endocrinologist said that there's a new type of CT scan that can measure bone quality and get a specific diagnosis.
So for a couple of weeks, I thought that my problems ended there. Nope. My doctor wanted to check my vitamin D again, because the previous vitamin D test had been done by a different doctor and he wasn't able to get the records, and wanted clear documentation of this issue. But more importantly because I was taking 10000 IU/day, he was worried that I was overdosing on Vitamin D, and that my levels could be "over 100". So three weeks after the previous Vitamin D test showing a level of 24 ng/mL, the new test only came back as 25 ng/mL.
The obvious conclusion here was that my body was not absorbing Vitamin D. So I asked the doctor to check my other Vitamin levels, particularly fat-soluble vitamins, and to treat this matter as urgent. He agreed, and my Vitamins A, E, and K were checked. Vitamin A was normal, K was barely at the low end of normal, but the Vitamin E had a problem that was quite rare. My Alpha Tocopherol levels were at the mid-range of normal (I had been taking E supplements). But my Gamma Tocopherol levels were very low, at 0.3 mg/L.
July 1, 2019.
Alpha Tocopherol: 14.8 mg/L (reference 5.9 - 19.4)
Gamma Tocopherol: 0.3 mg/L (reference 0.7-4.9)
This was the first time my doctor had ever even ordered a Vitamin E test for any of his patients. He did not know how to deal with this. I did plenty of reading on gamma tocopherol, and there is hardly any documented clinical data on gamma tocopherol deficiencies. However, I found one 2013 study showing that gamma tocopherol supplementation improved endothelial function after smoking cessation, due to the reduction of oxidative stress. My investigations showed that there are things that gamma tocopherol can do that alpha tocopherol cannot do. Certain types of proteins in macrophages, and reduction of certain producers of oxidative stress. Gamma tocopherol can also be converted to alpha tocopherol, while alpha tocopherol supplementation will cause a reduction of gamma tocopherol both in the tissues and the blood. Supplements usually only contain alpha tocopherol.
I concluded that my immune system was likely compromised, given a recent cellulitis diagnosis, and a prior diagnosis of pericardial effusion secondary to infection. The GI symptoms improved after the cellulitis treatment with antibiotics. When I told the doctor the symptoms improved, he believed that a C. Diff infection was the cause of the GI symptoms, implying that this contributed to the vitamin D malabsorption and osteopenia as well.
So how did my levels of gamma tocopherol get so low, and is it a possibility that this measurement was faulty? Well, my best determination is that the root cause was the sesame seed allergy, and having no warning at any point that this could be a problem. I avoid foods with nuts and seeds. Most gamma tocopherol comes from nuts and seeds, or leafy vegetables (which I was eating none of in that past year). If that wasn't enough, sesame seeds contain sesamin, which has a separate mechanism to help boost and possibly regulate tocopherol levels (especially of the gamma variety).
I was not informed by my allergists about any of the nutritional risks involved with avoiding certain foods. You'd think that as one of the only services they provide at that clinic, they'd at least have an elementary understanding of this, and maybe spare some patients an agonizing and slow downward spiral, like what happened with me. /rant.
I'm not sure if there's much in the way of reliable help for me. Given my symptoms, this could be a rare type of Vitamin E deficiency that is very real but with no matching case studies that I could find. There were only a handful of case studies that I could find on alpha tocopherol deficiency, but not gamma. I don't know if I'm a dead man walking or if I'm going to improve. I know it can take many months, and probably years, to resolve a vitamin E deficiency, as the cells need to replace themselves with higher quality constructions.
I've begun taking a mixed tocopherol supplement, and have done what I can to get enough diagnostic tests to rule out imminent serious danger. But we're talking about endothelial dysfunction and possible atherosclerosis. And my cognitive function is not great lately. My mind is quite impaired, all the time, compared to when I was young. I first noticed problems with cognition and memory in 2014. This definitely was a factor in the burnout from last year. But I'm rambling at this point.
My goals here are:
1) Assess my specific risks.
2) Identify optimal path to recovery
3) Make sure nobody else needs to go through what I did, by getting the word out. I will get the medical guidelines changed if I can, and will file appeals if necessary, all the way up to the President of the United States if that's what it takes. The medical system is dysfunctional, and a big burden to us all. It's become a barrier to longevity, not a supporter of it. I'll try to treat it as submitting a "bug fix" to the medical system, but if the system fails to respond to it, then I'm going to work to change the system to one that can, or at least create a new one to eventually replace it through attrition.
Thanks.
