Could alopecia be as simple as a zinc deficiency?

Baz493

Well-Known Member
I am trying to get my head around this Alopecia, not everyone has this with ME/CFS EDS Hair loss, countless take fish oils, multi vitamins minerals & most stop them as they become bothersome. There are a few good Groups on Copper on Facebook & one is dead against any blood tests for copper saying they are useless they do not believe in ranges or toxicity they mention vitamin A as well they take this & iron.

There is an interesting paper I read & not all have a kidney that is enlarged but my left one is & so was hers she was a 21 year old Medical student she became sick she tested positive for the latent TB form & negative on the other one. She was treated but her illness did not go away. She had an untrasound they said her kidney was enlarged & it took her more years to have the proper venous scans.

They kept telling her that her kidney was fine but it was not her kidney it was the vein one inch higher above she was finally diagnosed with Nutcracker Syndrome but she underwent the first of its kind in the UK an auto-transportation surgery.

They did not want do this so she told the Team she would go to the USA or France so they gave in & said we will do this. She felt well in the post-op recovery room she knew this was why she was so ill & she recovered but several months later she developed Stenosis of a renal vein & had to undergo another Surgery.

There are other tests she did Gold standard ones urine collections she wrote about on her Published paper. Patient/Medical Student/GP/Author Dr. Tamara Keith She is now a partner GP in Cambridgeshire. They told me I had a Dromedary Hump a large lop sided kidney like a single Camel hump on ultrasound but never did the venous venography testing she underwent. She is also on Twitter...
After my last I took another look at what you were discussing. Vitamin A is a necessary nutrient for the kidneys but kidney disease can turn the situation around so that the vitamin A aggravates the disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5351338/ In early stages of disease retinoic acid and retinoids help to reduce the severity of not only kidney conditions but many different health issues throughout the body. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4370041/ Think of all of the damage, resulting from toxic substances being eliminated by both the liver and kidneys, and the role of the retinoids in enabling repair. https://pubmed.ncbi.nlm.nih.gov/37331524/ One of the bigger problems is that cadmium actually enters the cells in the kidneys, with a half life of up to thirty years, making things even worse. That's what I have been looking at in terms of my own condition. I would consider it possible that the issues with vitamin A may relate to the iron deficiency found in kidney disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7062209/
 

Aidan Walsh

Well-Known Member
I think that the best place for me to respond to that question is by mentioning a documentary called White coat rebels. Sorry if I can't provide a link but the one's I know about are considered commercial websites so wouldn't be appropriate to post. One of the experts in the doco states that one of the primary attributes which universities tend to look for in choosing medical students is their level of obedience, rather than intellect or commitment to helping patients. Medical associations keep a tight rein on their union members and, as the doco mentions, senior members of the associations tend to have significant pharmaceutical company connections and don't want the membership going around curing patients, since we are seen as cash cows. When you begin looking at the medical research which is available online you find a massive difference in quality between the highly skilled researchers and the one's who are only funded because of their connections. The best research is around twenty or thirty, if not more, years ahead of standard medical practice because doctors simply aren't allowed to refer to the research in their practices. They actually have to sign a commitment to avoid even speaking about subjects not approved by their medical associations. So you shouldn't be too surprised if standards of medical care aren't particularly high.

As my own standard of medical care, throughout my life, has been particularly substandard I have become increasingly better at trying to understand what is happening in disease. What I have found in looking at medical research is that you get groups of diseases which all share common causal factors so one person's chronic fatigue may relate to one set of diseases while another person's will relate to a completely different set. While I am fairly limited to knowledge of medical research on the subject of just a handful of diseases I have looked at what you are asking because of my own nephrotic syndrome. Firstly you have to understand that copper holds the distinction of being both a heavy metal and an essential nutrient (in small doses). Quite simply, you don't want to have high levels of copper in your body and probably get enough from your diet to cover your needs, though it never hurts to have the occasional food containing high levels. https://www.eatforhealth.gov.au/nutrient-reference-values/nutrients/copper Doctors always go on about taking iron for deficiencies but I have watched people grow old quickly from such advice. Iron is used in some explosive recipes because of the high oxygen content and flammability it has and this is the same reason that it is a cause of oxidative stress in the body. You can have high levels of it in your blood, causing oxidative stress, and yet still have symptoms of deficiency because your body isn't using it efficiently.

Anyway, because the kidneys and liver are our bodies organs for detoxification it means that almost all of the toxins and heavy metals we are exposed to are going to pass through them at some point. https://www.eatforhealth.gov.au/nutrient-reference-values/nutrients/copper Medical research connects my own nephrotic syndrome more with cadmium and organic solvents than with other factors. Because of my exposure to engineered silica nanoparticles in my last job I honestly thought that might relate but they seem more likely to damage the kidneys. https://www.news-medical.net/news/20220829/Inhaling-silica-nanoparticles-can-damage-the-kidneys.aspx I'm sorry to have to tell you that doctors can make up all kinds of excuses to deny patients medical investigations as they have in my own case. I have had specialists describe my local hospitals denials of investigations as suspicious, given all of the facts in my case. In Australia doctors protect their peers at the expense of their patients so one doctors screw up will lead to other doctors refusing the investigations which are likely to expose those mistakes. As for vitamin A and iron metabolism here are a few articles to consider. https://pubmed.ncbi.nlm.nih.gov/27551308/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3847738/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8835033/ Although a number of other nutrients are required for iron metabolism it is essential to have vitamin A as well but some of our bodies will quickly convert it into retinoids before it can be used in iron metabolism. Since cadmium, which disrupts many processes in our bodies (including increasing conversion of vitamin A to retinoids), is bioaccumulative the older we get the worse its effects on our health.
thanks, one recent post a guy mentioned on Cort Johnson Health Rising also the importance of Fibroscans being performed in ME/CFS.

My GP gave me Vitamin D3/Calcium I got pain in my left kidney the following day like a shock running up from my left kidney, I backed off waited tried again the same happened the next day.

Once I was on gel form Vit D3 larger doses my blood ran up to 900+ Istopped taking it, but D3 does help pain at times no doubts...
 
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Baz493

Well-Known Member
I really don't know much about advisable medical investigations given that most of my local physicians have tried to deny me any at all. If it hadn't been for a handful of doctors I wouldn't have received the investigations to date, giving me diagnoses of myositis, chronic thromboembolic pulmonary disease, cholecystitis, Barrett's oesophagus, and a range of other conditions. It was an uphill fight to get those investigations and they still don't answer every question regarding my health.

Since vitamin D alone can raise your calcium levels it could well be that the combination resulted in hypercalcemia. https://my.clevelandclinic.org/health/diseases/24750-vitamin-d-toxicity-hypervitaminosis-d and https://pubmed.ncbi.nlm.nih.gov/16538974/
 

Aidan Walsh

Well-Known Member
I really don't know much about advisable medical investigations given that most of my local physicians have tried to deny me any at all. If it hadn't been for a handful of doctors I wouldn't have received the investigations to date, giving me diagnoses of myositis, chronic thromboembolic pulmonary disease, cholecystitis, Barrett's oesophagus, and a range of other conditions. It was an uphill fight to get those investigations and they still don't answer every question regarding my health.

Since vitamin D alone can raise your calcium levels it could well be that the combination resulted in hypercalcemia. https://my.clevelandclinic.org/health/diseases/24750-vitamin-d-toxicity-hypervitaminosis-d and https://pubmed.ncbi.nlm.nih.gov/16538974/
thanks, I was only on a small combo calcium/vitamin D3 together this time, but the last time years ago I took larger doses that resulted in high level D3 gel forms to 900. We all know that too much vitamin D can cause kidney failure so I stopped altogether, I do wonder if the pain was maybe this time due to possible kidney vein compression issues & the calcium uptake?

I think eurology may have focused on the scans at looking just at the kidney size on CT Contrast & I never had venography done which is diagnostic so until I do I cannot say but I do suspect especially after that ultrasound my GP requested which showed the enlarged left kidney.

Australia says ME/CFS is a gentic disorder of the spine in calcium, they use low dose naltrexone 1 to 4 mg. daily in tiny doses not D3/Calcium
 

Baz493

Well-Known Member
thanks, I was only on a small combo calcium/vitamin D3 together this time, but the last time years ago I took larger doses that resulted in high level D3 gel forms to 900. We all know that too much vitamin D can cause kidney failure so I stopped altogether, I do wonder if the pain was maybe this time due to possible kidney vein compression issues & the calcium uptake?

I think eurology may have focused on the scans at looking just at the kidney size on CT Contrast & I never had venography done which is diagnostic so until I do I cannot say but I do suspect especially after that ultrasound my GP requested which showed the enlarged left kidney.

Australia says ME/CFS is a gentic disorder of the spine in calcium, they use low dose naltrexone 1 to 4 mg. daily in tiny doses not D3/Calcium
Another unlikely thing you might want to consider is the rare possibility of liver failure inducing kidney failure. I'm fairly certain this happened to me, experiencing orange discolouration of my skin prior to symptoms of severe muscle damage. Vitamin D deficiency can play a role in this. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5946281/ Assuming your doctor gave you the vitamin D and calcium to try to fix a deficiency then it kind of opens the door to a number of possibilities like this.
 

Aidan Walsh

Well-Known Member
Another unlikely thing you might want to consider is the rare possibility of liver failure inducing kidney failure. I'm fairly certain this happened to me, experiencing orange discolouration of my skin prior to symptoms of severe muscle damage. Vitamin D deficiency can play a role in this. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5946281/ Assuming your doctor gave you the vitamin D and calcium to try to fix a deficiency then it kind of opens the door to a number of possibilities like this.
Published in January 2022 Japan on nutcracker syndrome compression the patient case study was given a blood thinner they mentioned the cause of nutcracker syndrome was thromboembolism blood clots in lung I know it is missed on testing with renal vein thrombus, 20 days later his condition resolved when a medicine called Rivaroxaban was administered as an anticoagulent. He was on it past 12 months because the clots can come back. They mentioned 4 case studies 4%, maybe they missed so many

Maybe this could be why Ron Davis test being developed is to do with thick blood passing inside veins maybe its a form of blood clots. Some are Born with Nutcracker Syndrome, some develop with accidents/sports/injuries, it runs in familes, they say it does not it is seen alot in EDS as well.

NCS is also helped with gaining weight or even a baby aspirin which is a blood thinner, but one can bleed with these
 

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Baz493

Well-Known Member
I appreciate the thought but doctors have pretty much gone into lockdown on me to try to prevent any further investigations which would uncover their peers incompetence. A prior GP who attempted to help me with investigations implied that his career had been threatened for helping me fight for investigations. Friends have described them as being determined to bury their mistakes with me. The local hospitals pulled out every excuse in order to avoid completing medical investigations of my autoimmune myositis while still claiming that there is there is nothing significantly wrong with my health. Even with the diagnosis of the chronic thromboembolic pulmonary disease they still argue the same thing despite the fact that it proves that I can't walk more than a few steps at a time without dangerously raising my heart rate.
 

Aidan Walsh

Well-Known Member
I appreciate the thought but doctors have pretty much gone into lockdown on me to try to prevent any further investigations which would uncover their peers incompetence. A prior GP who attempted to help me with investigations implied that his career had been threatened for helping me fight for investigations. Friends have described them as being determined to bury their mistakes with me. The local hospitals pulled out every excuse in order to avoid completing medical investigations of my autoimmune myositis while still claiming that there is there is nothing significantly wrong with my health. Even with the diagnosis of the chronic thromboembolic pulmonary disease they still argue the same thing despite the fact that it proves that I can't walk more than a few steps at a time without dangerously raising my heart rate.
Maybe your Thrombo is what I mentioned above on Nutcracker from Japan or the UK Doctor. ME/CFS or EDS are Syndromes they must investigate. Change Doctors get new ones if plausible. Are you in the UK or USA or another place?
 

Baz493

Well-Known Member
I'm in Australia. Doctors here seem to be a law unto themselves. Until 2013 I had antiphospholipid syndrome relating to nephrotic syndrome however I was able to eliminate it and come off the blood thinners by September that year. However I had the symptoms of liver failure, muscle damage, and so on, in February the following year, relating to my employment. Although I showed no evidence of a return of the blood clotting until about May 2014, with doctors telling me to ignore the symptoms when they did return, doctors chose to cover up their screw ups by claiming that the return of the blood clotting was simply the original issues returning. They simply chose, and continue to choose, to ignore all evidence of the liver failure and resulting issues no matter what evidence I have been able to accumulate. The last doctor who tried to help me, proving I had the myositis, had to fight with the local healthcare system to get me the required medical investigations. He implied to me that they had threatened him. Doctors have since stated that the hospital cut corners in their investigations but there's nothing they can do; our hospital control access to most of the required medical investigations and have used every excuse to deny me them. After ten years of fighting I've been told to give up and just don't have any fight left in me.
 

Aidan Walsh

Well-Known Member
I suggest you read the first link on Cort Johnsons blog Artificial Intelligence it mentions liver issue & why theAuthor is a data analyst he put all the ME/CFS data into the computer he also talks about an illness from baldness medicine it is on his list, he was well in a month or more his name is Efthymios Kalafatis,

thanks to his work now an Oxford Team feel they have a bio marker coming out, it is a liver test of some kind highly elevated, he also mentions what I said on methylfolate & mrthyl-B12 & all he is on now

They also both believe it is a liver issue not brain issue he mentions diet elimination, I think he has EDS like so manyME/CFS have both LABELS. I think it is synthetic folic acid foods making him sick & sugar & any alcohol. Most alcohol is made from grains
 
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Aidan Walsh

Well-Known Member
I'm in Australia. Doctors here seem to be a law unto themselves. Until 2013 I had antiphospholipid syndrome relating to nephrotic syndrome however I was able to eliminate it and come off the blood thinners by September that year. However I had the symptoms of liver failure, muscle damage, and so on, in February the following year, relating to my employment. Although I showed no evidence of a return of the blood clotting until about May 2014, with doctors telling me to ignore the symptoms when they did return, doctors chose to cover up their screw ups by claiming that the return of the blood clotting was simply the original issues returning. They simply chose, and continue to choose, to ignore all evidence of the liver failure and resulting issues no matter what evidence I have been able to accumulate. The last doctor who tried to help me, proving I had the myositis, had to fight with the local healthcare system to get me the required medical investigations. He implied to me that they had threatened him. Doctors have since stated that the hospital cut corners in their investigations but there's nothing they can do; our hospital control access to most of the required medical investigations and have used every excuse to deny me them. After ten years of fighting I've been told to give up and just don't have any fight left in me.
He was actually harmed by the medication Finasteride I think this one is used in baldness & other things...Sorry to hear you have APS Hughes Syndrome found by Dr. Hughes in the UK
 

Baz493

Well-Known Member
I agree with what you are saying though view the causes of liver damage as being much more complex. Because retinoic acid, and other retinoids, play a wide range of roles in trying to prevent severe disease they can also aggravate disease, including in the liver. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9002467/ That's how vitamin A can be involved in the conditions you mentioned. I am fairly certain, from my own experience, that the worse a person's health becomes the more we are drawn to eat foods containing vitamin A and the more severely the retinoids impact the health of our livers. A bit like a pyramid scheme where people initially benefit but eventually lose everything. While I obviously have to keep some sources of vitamin A in my own diet I have been gradually removing the vast majority over the last couple of months. It's likely to negatively impact my health in some ways but benefit it in others.
 

Aidan Walsh

Well-Known Member
you should go on the link & communicate with him & he uses zinc, write down the vitamins/diet, also Oxford University in the UK believe they have now from this work a bio marker will come out soon funded my the ME Association
 

Baz493

Well-Known Member
I missed the bit about the antiphospholipid syndrome. That gets complex. I used to have quite severe APS but got it under control, to the point where I felt safe to stop taking the blood thinners. However, after the symptoms of liver failure, I developed lupus anticoagulant. That's another form of blood clotting. I now seem to have both very mild APS and mild lupus anticoagulant. There seems to be some contention about whether blood clotting causes liver disease or the reverse however liver failure seems to be a precursor to lupus. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8191816/ https://pubmed.ncbi.nlm.nih.gov/33034712/
 

Aidan Walsh

Well-Known Member
I missed the bit about the antiphospholipid syndrome. That gets complex. I used to have quite severe APS but got it under control, to the point where I felt safe to stop taking the blood thinners. However, after the symptoms of liver failure, I developed lupus anticoagulant. That's another form of blood clotting. I now seem to have both very mild APS and mild lupus anticoagulant. There seems to be some contention about whether blood clotting causes liver disease or the reverse however liver failure seems to be a precursor to lupus. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8191816/ https://pubmed.ncbi.nlm.nih.gov/33034712/
Yes, APS can do this with Lupus I am negative on Lupus but not tested for Hughes Syndrome APS.

I will look now to see the name of the marker they are measuring I hear they wanna do immediate Clinical Trials with other purpose medicine they can measure mild to medium to severe patients but this was all found from the AI work done by this Guy.

He got a Ramzay Award to do the work plus he co-authored in his Country Greece a paper on Long COVID
 

Baz493

Well-Known Member
I took a look at the list of supplements. I'm already on most of them. I am holding off for a bit on the ubiquinol; having used it before I know it's going to help more at a later date. For the choline I will just include lecithin in my diet once I find a decent local source. As for the limonene I am doing a bunch of research to try identify the best type/s of terpenes to help my condition. Most experts go on and on about cannabinoid terpenes as being the best but I'm likely to favor something much more common for my diet.
 

Aidan Walsh

Well-Known Member
are you on the methyl folate methyl B-12 & the non folic acid food? It is in all flours een gluten free & soya & MSG is out.

The NIH also found something with a protein Published recently a Woman wrote to one member of the Team to say the Family has some genetic illness

trait & her fatigue was really bad, they wrote back to her surprise the next day saying they were interested in testing her they found some protein elevated

they also want a Clinical trial to use an existing medicine in another illness I will find the link & write it here later on
 
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Baz493

Well-Known Member
When I tried to locally source an MTHFR supplement, containing the methyl folate and other nutrients required for methylation of homocysteine in people with variants in the gene, it turned out that the supplements are prescription here. I am going to have to order them off the internet from overseas to avoid having to deal with explanations to doctors. For the moment I am forced to use a standard multivitamin containing the synthetic form, folic acid, which it's possible my body may not be able to use.
 

Aidan Walsh

Well-Known Member
When I tried to locally source an MTHFR supplement, containing the methyl folate and other nutrients required for methylation of homocysteine in people with variants in the gene, it turned out that the supplements are prescription here. I am going to have to order them off the internet from overseas to avoid having to deal with explanations to doctors. For the moment I am forced to use a standard multivitamin containing the synthetic form, folic acid, which it's possible my body may not be able to use.
methyl is so difficult, some put folic acid in methyl ones & you are not on his full protocol you are on some only. Amazon has some but read all the ingredients look up groups on facebook under methyl mutations, etc
 

Baz493

Well-Known Member
I will be looking at MTHF plus complex supplement when I'm ready. For the moment I have been focusing on reducing vitamin A intake, general nutritional supplements, as well as topical tomato juice (which contains trypsin inhibitors), as well as topical safflower oil (a non-comedogenic oil for maintaining skin moisurturisation), with fairly good results. However most hair restoration programs take around six or seven months to see much development so I've still got a long time to wait if anything significant is going to happen. In the meantime I am also looking at including some kind of terpene source in my diet to act as a retinoic acid receptor inhibitor.
 

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