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Copperheads 9: Calculating "free" serum copper for Wilson's disease [CC]

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Video description: how to calculate non-ceruloplasmin bound serum copper
Description box contents:
A. Accessibility
B. Where to find Wilson's disease Copperheads
C. Resources
D. Copperhead community rules
E. About Wilson's disease Copperheads
F. Music and images
A. ACCESSIBILITY
- All Wilson's disease Copperheads videos have Closed Captions (CC).
- All Wilson's disease Copperheads images have content descriptions.
B. WHERE TO FIND WILSON'S DISEASE COPPERHEADS
List of current and future videos: tinyurl.com/WDCvideos
RU-vid videos on Wednesdays! tinyurl.com/WDCyoutube
Instagram drawings on Sundays! tinyurl.com/WDCinstagram
Facebook updates every day! tinyurl.com/WDCfacebook
Email, any time! wilsons.disease.copperheads@gmail.com
C. RESOURCES
Here is a regularly-updated resource library! tinyurl.com/WDCzotero
D. COPPERHEAD COMMUNITY RULES
1. We do: educate and support all Wilson’s disease patients, as well as their relatives, partners, friends, loved ones, doctors, or anyone who wants to learn more about WD.
2. We do: love science and scientific evidence. If our videos or anyone in the comments says something you think is factually wrong, feel free to correct them, but back your correction with proper sources.
3. We do: try to answer all comments and questions posted in or sent to our official social media accounts (RU-vid, Instagram, and Facebook).
4. We do: ask you to write as clearly as you can, but also to not mock or insult others for their spelling and/or grammar.
5. We do: ask you to use language that’s respectful and suitable for all audiences; young people deserve access to information too.
6. We do: have an overall content warning for explicit discussion of:
- Physical and mental health problems
- Doctor and hospital visits
- Medical tests and surgeries
- Death
7. We do: allow you to discuss the details of your medical history in our official social media accounts if you want and if you are over 18. Please do not discuss the details of your medical history in public if you’re a minor due to legal concerns. Also, please do not discuss the details of somebody else’s medical history because we cannot confirm that they consented to you doing so.
8. We don’t: tolerate ableism, health-based discrimination, sexism, queerphobia, transphobia, racism, xenophobia, classism, or any other oppressive behavior.
9. We don’t: support eugenics (the idea that certain people or groups should not reproduce or should not be born).
10. We do: respect a diversity of religious beliefs, but ask you to keep religious talk to a minimum. Instead of “I’m praying for you” you could try “you’re in my thoughs”; instead of “God is with you” you could try “I am with you”; etc.
11. We do: let you know that if you don’t respect our community rules, you might receive a warning, your comment might get deleted, or your profile might get blocked (depending on the severity of the offense).
E. ABOUT WILSON'S DISEASE COPPERHEADS
Hello Copperheads! My name is Cupri (that’s an alias I’m using to protect myself from possible health-based discrimination from future employers). I do not know yet if I’m a carrier or a patient of Wilson’s disease. I’ve been stuck in diagnostic limbo since July 2016; during this time, I’ve put my biology degrees to good use by learning everything I can about WD.
WD is a rare and complicated genetic disease. Most patients and their close ones are lost and confused because there simply aren’t any good resources out there that explain all the details in terms the average person can understand. I have spent so many hours of my life educating people, that I have finally decided to gather all my educational resources in one place.
WD is a autosomal recessive genetic condition that affects copper metabolism. Patients are rare (1 in 30,000) but carriers are relatively common (1 in 90). If left untreated, WD causes death in 100% of cases. Thankfully, there is effective treatment available, but it is still a difficult disease to live with! Especially because many doctors are not familiar with it and don’t know how to treat WD patients. The goal of Wilson’s Disease Copperheads is to change this by promoting education and awareness about WD!
Follow our social media accounts, join our learning community, and contribute to the conversation about WD!
F. MUSIC AND IMAGES
Intro/outro music: Fastest Man on Earth by Jahzzar freemusicarchiv...

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22 авг 2024

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Комментарии : 13

@keithalvaraz9070 6 лет назад

Thank you for uploading these videos. They're incredibly informative and comprehensive. Could someone help me proof my calculations? I'm kind of at the point of desperation and my symptoms are getting worse. A brief preamble... I was diagnosed with Hereditary Haemochromatosis in December of 2017 (C282Y Homozygote) with a raised ferritin of 612 and a transferrin saturation of 82%. My symptoms leading up to diagnosis were predominantly neurological. After undergoing seven venesections in January and February of 2018, my ferritin has stayed below therapeutic limits but my neurological symptoms have somewhat worsened. I have a kinetic oromandicular dystonia that has been occurring most days in the last three months. The term, dystonia, which I only became aware of two weeks ago, led me in the literature to an association with Wilson's Disease. Despite the unlikelihood of having both of these conditions, I ordered private Serum Copper and Ceruloplasmin labs rather than wait a month to see my Hepatologist. The results are as follows: Ceruloplasmin: 0.2 g/L (200mg/L) Serum Copper: 14.5 umol/L Using this paper by Dr. J.M. Walshe (doi.org/10.1258/000456303763046021) in the UK, I was able to calculate my non-cerulosplasmin bound copper: 'Free' Copper: 5.06 umol/L (32.18 ug/dL) Free Copper Percentage: 34.9% Based on these results I've ordered my Urine Copper and am awaiting results. My concentration is very poor (it's taking a lot of effort just to write this) so I'd appreciate some help with the calcs. I'd be happy to send a pdf with my numbers to anyone who's interested. For the sake of completeness, I'm a 34 year old white man who's significant medical history started 5 years ago (29 years old) with an isolated grand mal seizure followed by an intermittent head tremor and gait abnormality for approximately 1 year. No condition diagnosed although abnormal EEG's were observed twice although no recurrent seizure led to no further investigations or diagnosis. Remained free of acute symptoms until December 2016 when jaw first locked to the side for a period of minutes. Admitted to neurology but discharged very quickly. Recurrence of significant head and arm tremor in September 2017. Readmitted to Neurology and diagnosed with a functional Neurological disorder. My personal dissatisfaction with this diagnosis led my to nag my GP to look for other conditions which led to HH diagnosis. Tremor subsided after several months but the oromandibular dystonia occurs daily and seems to occur when ever i climb stairs/ascend a gradient. I also periodically have a dystonia in my right foot which turns inwards, although this only seems to happen when I significantly exert myself. Current symptoms of note: Polydypsia (6-7 litres per day), Polyurea (5-6 litres per day), Hypertension (147/97 on 24h trace), Ataxia (general clumsiness), Brain Fog, Significant Cramp (Small of back, glutes, thighs and calfs. Taking 120mg of codeine on bad days), Dystonia (jaw locks to one side and foot turns in). I've been off work (Doctoral Researcher) since September of 2018, my quality of life is deteriorating, I have a wife and a three year old son and things are becoming desperate. I'd appreciate any advice and ideally a recommendation of a physician/hepatologist who knows what they're doing. I have no trust in my doctors anymore (I've never met my Consultant Hepatologist despite having HH). A different consultant hepatologist has seen these lab results but considered them 'normal'. This video and the literature I've read however, has me convinced that further investigation is warranted.

@wilsonsdiseasecopperheads7355 6 лет назад

Hi Keith. Thank you for the compliment :) also, I could totally tell you're a science person by the second paragraph. And I'm so sorry life is being so hard on you. I hope things turn for the better soon. I checked your calculations using the info in the addendum of that paper, and they are indeed correct. However, the author rounds the numbers a bit; more accurately, ceruloplasmin is 3.15% copper (not 3%), and the molar mass of copper is 63.546 (not 63.6). However, that math still gets you in the ballpark (see below): ceruloplasmin: 200 mg/L total serum copper: 14.5 µmol/L total serum copper (µg/L) = total serum copper (µmol/L) x 63.546 g/mol = 14.5 x 63.546 = 921.417 µg/L non-ceruloplasmin bound serum copper (µg/L) = total serum copper (µg/L) - [ 3.15 x serum ceruloplasmin (mg/L) ] = 921.417 - (3.15 x 200) = 921.417 - 630 = 291.417 µg/L non-ceruloplasmin bound serum copper (% of total) = 100 x non-ceruloplasmin bound serum copper (μg/L) / total serum copper (μg/L) = 100 x 291.417 / 921.417 = 31.627 % Values like those and symptoms like yours definitely make me suspect WD, and it's definitely possible to have both WD and HH. However, ceruloplasmin is a ferroxidase, so copper and iron metabolic processes to strongly impact each other. I don't know as much as I'd like about said interactions, or about HH. However, a quick search shows that ceruloplasmin is often decreased in HH patients: onlinelibrary.wiley.com/doi/pdf/10.1046/j.1365-2141.2001.02917.x I guess we need to see what further tests will show. Have you already gotten the 24-hour urine test? Sending lots of strength your way

@keithalvaraz9070 4 года назад

@@wilsonsdiseasecopperheads7355 I know it's been a year, but thank you so much for taking the time to respond to my concerns when I was in a really desperate place. I did have a 24h urine done soon after but it was completely normal. It's been a long road but I actually have a form of tetrahydrobiopterin (BH4) deficiency called PTPS which causes hyperphenylanemia and catecholamine deficiency. A lack of dopamine was causing my dystonias which to my great relief is something that's resolved when taking levodopa. Thanks again for taking the time to inform people and help with these rare conditions. If it weren't for the kindness of strangers like you, I honestly would never have made it this far. Just sorry it's taken so long to say so!!

@KMx108 2 года назад

@@keithalvaraz9070 would you be willing to share what led you towards your ultimate diagnosis? And how are you able to order your own tests? Thanks for sharing your journey.

@debbieschmidt6448 2 года назад

I am trying to complete calculations. Ceruloplasmin through Labcorp (don't know if it is immun or enzymatic method) is 17.5 mg.dL and copper serium is 71 ug/dL. Zinc is 75 ug/dL. Are there other metabolism issues that are not as aggressive as Wilson's like just a really significant copper /zinc imbalance for life long vegetarians?

@debbieschmidt6448 2 года назад

also how do I find a way to test ceruloplasmin by enzymatic method? are any of the main labs offering this?

@wellnesspathforme6236 2 года назад

Cp copper = 61.25 ug/dL (assuming 100% holo-ceruloplasmin and 6 coppers per ceruloplasmin enzyme/protein. There used to be 8 per, but it was changed to 6) Total Serum Copper == 71 ug/dL. ... Minimum non-Cp-bound copper = 71 - 61.25 = 9.75 ug/dL.

@wellnesspathforme6236 2 года назад

The system doesn't want people to be familiar with this method because low bio-active Cp will almost certainly correlate very closely with so-called disease states.

@wellnesspathforme6236 2 года назад

Dr. Carl Pfeiffer originally promoted copper toxicity and the copper/zinc axis. He worked closely with the CIA, tested on children, and apparently some of those children were never seen again. He claimed to want to find a cure for schizophrenia, but he never mentioned that ceruloplasmin-bound copper injections spontaneously cured 13 out of 30 schizophrenics in a late 1950's study. Another 13 had experienced significant. What would a second shot have done for them? We'll never know, and Pfieffer's role is to distract us from the truth. Injecting ceruloplasmin into humans was criminalized after these stunning results. Anything coming out of Pfeiffer is suspect. Zinc stimulates metallothionein, which binds up metals, including copper, so the body can't use them. Zinc effectively nullifies copper supplementation the way calcium effectively nullifies magnesium supplementation. Also, copper toxicity will rarely occur separate (perhaps never) from iron overload toxicity. If all the copper is safely bound in ceruloplasmin, then it isn't toxic, by definition. If lots of non-Cp-bound copper is floating around, it pretty much means Cp is not activated by the copper and can't act as ferroxidase to facilitate the iron recycling process. IOW, high toxic copper == low bio-copper == low ferroxidase function == iron stuck in macrophages and tissues == oxidative stress == bio-molecule damage == inflammation == disease == Empire, Inc. profit maximization. Did Pfeiffer highlight this? Nope, he distracted from it... he cares no more about you than the orphaned children he experimented on with the CIA.

@wellnesspathforme6236 2 года назад

Retinoic acid is required to load copper into ceruloplasmin. Retinol is packaged with animal fat. Sun exposure breaks down the retinol into retinoic acid, which supports Cp-Cu production by the ATP-7B enzyme. Vegans don't ingest retinol. Theoretically, their body can process 12 beta-carotenes into 1 retinol, but the enzyme that does this is copper based. So, if one is both vegan and low in bio-copper, retinol will deplete, bio-copper will deplete, iron will overload, oxidative stress will build... you know the drill. Copper toxicity is real, but it is a cover for the much worse iron overload toxicity -- a key agenda of the Money Power Families who financed metallic iron filings into the foold supply beginning in 1941 -- and based entirely on a lie!!! The claim was pregnant women with anemia had babies with poor health. The actual research shows the exact opposite -- the healthiest babies are born to women with hemoglobin around 8.5-9.0 g/dL. And it makes perfect sense! Babies are miniature versions of Momma. Momma's blood is optimized for the big version. In order to optimize it for the baby, the blood must be thinned out to fit through the smaller vasculature of the baby. Nature does this automatically. Rockefeller Medicine falsely claims this is unhealthy and recommends women take iron supplements to thicken their blood so it is not optimized for the baby anymore. Baby get unoptimized blood and hit with a bigger dose of toxic, inorganic iron while developing.