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#haemochromatosis
etlu-yume · 10 months
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I really ought to finish these damn Transferrin Saturation paper notes but I'm struggling with the line-by-line horror stories of how fucked up it is.
Like phew I don't even know what's worse:
• Transferrin Saturation as an indicator of Hepcidin production (oop)
• >50% Transferrin Saturation exposure associated with joint symptoms
• High Transferrin Saturation (>50%) also associated with the appearance of NTBI (Non-transferrin bound iron), which is likely linked to things like *organ damage*
• Therapeutic Phlebotomy treatment linked to an INCREASED iron absorption after procedures because (somehow. I haven't found exactly HOW yet) it decreases Hepcidin production.
It's such a fucking hot mess like what do we even DO with this information??? There's no hepcidin synthetics from a few (admittedly quick) googles (I *did* check the clinical trials website and nothing of interest/help). The paper in question talks about how a Melbourne study suggests that it may be more beneficial to *NOT* treat mild cases of iron overload. Which I find wild because the same paper also points out that a low ferritin does not mean you have a low transferrin saturation, and it's exposure to a high TS% over a long period of time that seems to be associated with worsening symptoms (particularly joint pain, ability to do work, athletic ability, and libido).
From my brief googles, there's no easy lab tests for Hepcidin. There's no easy lab tests for NTBI. These are things that could be doing who-knows-what and we can't even tell.
Add to it the whole Estradiol/Hepcidin link and it just all is an absolutely hot mess and do not like the implications of where this leads nor the fact that it seems very few people in research world have looked at this. (I'm not surprised. I'm not fucking surprised. They love to run with the myth that women with haemochromatosis are protected by their periods. In the words of a specialist I absolutely loathed, "you're self medicating with periods". Yeah. Sure. Tell that to my 18 year old self. Tell that to anyone who either knowingly or unknowingly is taking a Contraceptive Pill that has iron tablets instead of sugar placebos. [Because I only just found out THAT is a thing. I was always so worried about what's in the hormone tablets, but this was a whole new level of 'wot'].)
I'm rambling because I keep stopping every couple of sentences. This paper goes hard. Sure it's not perfect and there's a lot of unanswered questions too but there's plenty of food for thought and ooooh boy I'm sorry Dr Haemotologist Sir, it's gonna be one hell of an introduction session.
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aethxr-ash · 2 years
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does anyone know of any ways to test for anemia and/or haemochromatosis without going to the doctor for a blood test? i dont have access to one right now and i have symptoms of both, except i can't risk taking iron supplements for anemia because i have an increased risk of hereditary haemochromatosis (too much iron) but i'm starting to get into more severe symptoms (extreme fatigue, headaches, unexplained and spreading "bruises" that im not even sure are bruises). thank you !!
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theonlyladyt · 6 months
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Managing Genetic Hemochromatosis: An Overview of Dietary Measures, Which May Reduce Intestinal Iron Absorption in Persons With Iron Overload - PMC
Hello lovelies, I hope this finds you well.. I been in bed since last Thursday with the same heart symptoms that wake me up at silly o’clock in the morning and continue until about 3pm almost 12 hours or more. So this post is the first post I’ve written since I published last. Hemotomachrosis is a genetic condition that doesn’t affect me. But it affects some I know really well. I don’t like to…
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If I find out I’ve picked up another life-long fucking illness it might actually send me off the edge!
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serialghoul · 9 months
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i had a doctors appointment the other day and my mri results were good except i have an unexplained sinus lesion and my bloods were good except i have unexplained macrocytosis so i left with referrals for a gastroenterologist, a haematologist, and two CT scans and its not like i’m unconcerned but there is something distinctly funny about it
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tinacalder · 5 months
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Charity Launches Large-Scale Public Awareness Campaign For Genetic Condition With 1 In 10 At Risk Across Northern Ireland
Recent research by patient charity Haemochromatosis UK has revealed that 1 in 10 people are at risk in Northern Ireland of genetic haemochromatosis.  Most people have never heard of the condition. Yet it’s the most common genetic condition locally.  Untreated, the condition can lead to toxic iron overload, where the body is unable to process excess iron. The condition can cause liver disease,…
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12th World Gastroenterology & Hepatology Conference
Do you have critical or creative insight into representations of liver biopsy, the 12th World Gastroenterology & Hepatology Conference held on December 21-22, 2022 in Dubai, UAE Submit an abstract of all related topic in #GI #Hepatology any queries DM me.
Abstract submission link: https://gastroenterology.universeconferences.com/liver-biopsy/
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beta-lactam-allergic · 3 months
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In world first, Israel approves cultured beef for sale to the public - The Times of Israel
In world first, Israel approves cultured beef for sale to the public
I don't eat beef myself (never liked the texture, so avoided it anyway & haemochromatosis means I shouldn't eat it for my own health), but this seems like a big deal for beef eaters. Lab culture meat is a massive step forward in reducing the impact of our food consumption. I prefer chicken (I know lab-meat chicken has happened in the USA & Singapore), but we need lab meat that appeals to all tastes.
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ninlilwinds · 2 years
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hey, sorry if you aren't taking reqs rn, but can i request some baizhu comfort with an anemic!partner ? i'm showing a lot of symptoms but i can't afford a blood test, and since i'm at risk of haemochromatosis ("reverse anemia" - too much iron in your system) i can't risk taking iron supplements. i'm kinda terrified.
thank you, i hope you have a good day/night !
Hello! No need to apologize! I am not very adept in this subject, but I did some surface research and will be referring to the symptoms of this condition, so I don't mess anything up. But if I do get anything wrong, please let me know and I will review my work and research.
Also stay safe! I know it must be hard not having the resources to do the necessary test ect. Stay strong and I hope everything works out well!!
Plot: Reader with a special condition being comforted by Baizhu (Reader will be gn, but if i do happen to put pronouns in place, please let me know and I will fix it!)
You'd been a bit scared lately. Everything had been overwhelming. Your ability to do every day simply tasks was diminishing, and you found that particularly disheartening. Baizhu noticed these changes in you and at first decided not to pry. You hadn't mentioned anything, and he didn't really notice anything out of the ordinary. At least not at first.
You'd been helping him at the clinic, organizing and moving and Baizhu had to step away for a moment and take care of a particularly agitated customer. Him not being there to help with the heavier things, and the discomfort and pain that had been building up these past few hours had been so much, so you decided to sit down and take a break.
What you didn't anticipate was for this break to bring about dark thoughts that made your mind race with fear. This could gradually get worse, but up till when would your body not take anymore?
Tears fell from your eyes. The hurt, the fear, your constant tiredness, it was all getting to you. No one was around so it was ok to mourn for a bit before getting back to work.
You didn't hear when Baizhu had stepped back inside and saw you. He stayed by the doorway silently for a bit, thinking about whether it would be wise to approach you or not.
"(Y/n)." he said in a low voice. He didn't want to startle you too much, "What seems to be the problem?" he asked, eyebrows pressed together in concern.
He studied you and during work had noticed your slower movements and how you seemed to be straining yourself. You simply shook your head and hugged yourself, trying to will the lies of 'im ok' out of your lips, but the words refused to come out.
He approached you and kneeled before you, gently taking your hands, "Why don't we both take the rest of the day off?" he asked.
You nodded and he helped you up. On the way out he wrote a list of things Qiqi had to do then left with you.
He led you home and then helped you to your rooms. Afterwards he helped you find some comfortable clothes, then stepped out of the room for you to change privately and he started to cook something for you.
He came in a while later with some food and water. As you began to mostly play with your food but also eat a bite here and there, he finally reached out and stroked your hair.
After looking at you with a loving gaze for a bit, his hand stopped behind your head, and he brought you in for a tender hug.
"We'll get through this together, ok? I'll be here no matter what." He kissed the top of your head.
The rest of the day and a few days following he took the days off to help you relax a bit and such, but when you did return to work, he kept an extra close eye on you.
(I hope this helped you feel a bit better!)
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aroundtheworldiej · 1 year
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The suicide of Ernest Hemingway
By Tom Courel
When he returned from the United States in September 1960, after his trips to Cuba and Spain, he was not doing very well, either mentally or physically.
Many diseases
He suffers from high blood pressure and feels he is falling into blindness due to diabetes while suffering from cirrhosis. He is affected by bipolar disorder, which he has suffered throughout his life, and exhibits paranoid behavior, possibly also linked to the onset of Alzheimer's.
In December, he was sent to the prestigious Mayo Clinic in Minnesota for treatment with seismotherapy and sedatives. He was discharged in January 1961, but three months later he had to return to hospital, first to Sun Valley Hospital and then back to the Mayo Clinic, where he received further electric shocks. He returned home on 30 June, and two days later, on 2 July 1961, he shot himself. In the past, he blamed his father for his suicide, considering it an act of cowardice.
Hemingway's medical records, made available in 1991, showed that he suffered from haemochromatosis, a genetic disease that causes severe physical and mental damage. This disease could explain the numerous suicides in the Hemingway family (his father, brother, sister, and granddaughter).
A forced death
The New York Times questions the nature of Ernest Hemingway's death by publishing a letter from one of his biographer friends. On July 2, 2011, the 50th anniversary of his death, a letter from his friend Aaron Edward Hotchner published by the New York Times suggests that Hemingway was driven to suicide by strong pressure from the FBI. The FBI accused him of collaborating with the Cuban regime in the 1940s.
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mikkaeus · 1 year
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man I cannot follow the ddx in this episode (who’s your daddy 2.23). So she passed out because of the arrhythmia (makes sense), was having hallucinations because of the pain and this is explained by an autoimmune disease but then she doesn’t have an autoimmune disease she has haemochromatosis? Are they saying the hallucinations are because of hepatic encephalopathy? Haemochromatosis can cause iron deposits in the brain which can lead to neurological symptoms but they literally said she had no iron in her brain. Seems more like PTSD to me
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etlu-yume · 8 months
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Found one of those papers where they wanted to push the idea that Haemochromatosis "is defined" as iron overload leading to end organ damage, and not the presence of genetic predisposition.
And without fail it makes me mad.
Why the FUCK then does the Author of the paper itself, and pretty much the rest of the medical fraternity, call it "Hereditary Haemochromatosis".
Why does it "only count" if you have end-stage organ damage?
Like this whole definition screams... *something*. I can't quite pin point what exactly. But if you've got more people being diagnosed early through screening or family testing, then you're catching patients earlier. Which means they're UNLIKELY to get to this 'End Organ Damage' stage.
And you want to say that it only counts as Haemochromatosis if you have End Organ Damage?
(Hello yes I'm still raging mad about the author of this paper making sweeping blatantly wrong statements at a support group meeting)
("nobody gets diganosed under the age of 30" she said. Had to correct that - I got diagnosed at 18. "Oh but what was your iron level" 618. "BUT DID YOU HAVE ORGAN DAMAGE" technically no [even though gallbladder issues seem to actually be vaguely linked to Juvenile Haemochromatosis, but that's another story + another mutation that they don't seem to want to test for] "THEN YOU'RE JUST AN OUTLIER")
(Might be an outlier ma'am but still means your sweeping blanket statements of 'nobody gets diagnosed under 30' is wronggggg)
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lycanthrology · 2 years
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any anaemic bitches following me i have haemochromatosis if we work together we can redistribute the iron. doctors dont want you to know this
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stunningly-lesbian · 1 year
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saw your amazing response to the jk rowling blood donation misinformation! i have a question about only blood with higher than normal hemoglobin levels being accepted. the first time i tried to donate i was turned away because they said my hemoglobin levels were too low. are hemoglobin levels variable person to person for no particular reason like some people’s just being higher or lower overall or are there factors that play into it? and is a lower than average hemoglobin level something to worry about?
Thanks for the ask! Haemoglobin levels don't just vary from person to person, they go up and down throughout your life. There are some factors that give people overly-high or overly-low haemoglobin levels, but most of them are very treatable (one disease, haemochromatosis, actually has regular blood donations as one of the treatments). It can go down because of periods, ulcers, pregnancy, all sorts of incredibly common reasons.
If you donated in the UK, the person who took your donation would absolutely have told you if your haemoglobin levels were something to worry about. Our usual process with someone just under the threshold was to turn them away and ask them to wait three months. Chances are it would naturally go up. If they were more than thirty points under the threshold, we'd bring a nurse in to ask a couple questions to check theres no underlying issues, give advice on how to naturally raise haemoglobin levels (basically, iron tablets and high-iron foods), and ask them to come back in a year.
So yeah, if they didn't call a nurse in, chances are your haemoglobin probably wasn't even below average - just not high enough to donate. If they did call a nurse in, it's still no reason to worry. Low haemoglobin is very, very treatable ^_^
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healixhospitals24 · 12 days
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Reading And Interpreting Your Liver Function Test - A Guide To Commonly Used Liver Tests
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The liver is a vital organ responsible for numerous metabolic functions in the body, including detoxification, protein synthesis, and bile production. Monitoring liver health is crucial for early detection and management of liver diseases. One of the primary tools for assessing liver function is the Liver Function Test (LFT). In this guide, we will delve into the commonly used liver tests, how to interpret the results, and what they indicate about your liver health.
Understanding Liver Function Tests
Liver Function Tests (LFTs) are a group of blood tests that provide valuable insights into the health and function of the liver. These tests measure various enzymes, proteins, and substances in the blood that are indicative of liver health.
Key components of Liver Function Tests
Alanine Aminotransferase (ALT): Elevated levels suggest liver damage, commonly caused by conditions like hepatitis or fatty liver disease.
Aspartate Aminotransferase (AST): Similar to ALT, elevated AST levels indicate liver damage but may also be elevated in conditions affecting the heart or muscles.
Alkaline Phosphatase (ALP): Elevated ALP levels may suggest liver or bone disease.
Total Bilirubin: Increased levels may indicate liver dysfunction or obstruction of bile ducts.
Albumin and Total Protein: These are measures of liver synthetic function; decreased levels may suggest liver disease.
What are the causes of abnormal liver function test results?
Causes of abnormal liver function test results can vary and may indicate different underlying conditions. Some common causes include:
1. Build-up of Fat in the Liver:
* Non-alcoholic fatty liver disease (NAFLD) can lead to abnormal liver function tests, especially in overweight or obese individuals.
2. Liver Inflammation and Damage:
* Infections, toxic substances like alcohol or certain medications, and immune conditions can cause liver inflammation and subsequent abnormal test results.
3. Liver Overworking:
* When the liver is under stress from processing medicines or toxic substances like alcohol or paracetamol, it can result in abnormal liver function tests.
4. Bile Duct Blockage:
* Blockages in the bile ducts, such as by gallstones, can lead to abnormal liver function test results.
5. Liver Conditions and Diseases:
* Underlying conditions like Wilson's disease, haemochromatosis, or Gilbert's syndrome can affect liver function and result in abnormal test values.
6. Liver Injury:
* Physical injury to the liver, trauma, or presence of abscesses or tumors within the liver can cause abnormal liver function tests.
7. Medications and Supplements:
* Certain medications, over-the-counter drugs, herbal remedies, and traditional medicines can also impact liver function test results.
8. Other Factors:
* Factors like high alcohol intake, viral infections, autoimmune conditions, metabolic liver diseases, heart problems, and tumors in the liver can contribute to abnormal liver function tests.
Continue Reading: https://www.healixhospitals.com/blogs/reading-and-interpreting-your-liver-function-test-a-guide-to-commonly-used-liver-tests
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rustflow · 4 months
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Sabitsuki is diagnosed with Haemochromatosis. It is a genetic mutation that makes people ‘rust’. If left untreated, it causes heart disease, arthritis, loss of energy, cirrhosis of the liver and liver cancer.
Age is; Seventeen.
SHORT BIO;;
Sabitsuki was born to a family of Doctors, her father Takashi Ochki was a children’s doctor. She was born ill and he had begun to do some small tests on her and other children.  It went from harmful to life threatening. He’d killed many children doing these experiments to save his daughter.
he had his head nurse and his maid care for Sabitsuki as he looked for a cure. He rarely lets Sabitsuki go outside, but when she does it’s to sit with the male gardener–he won’t give his name. But he and the garden children always greet her with a smile.
Speaking of smile. She knew of a boy who smiled a lot, and his pesky sister. But she avoided him.
She was then hooked into a program that her father believes, will save her. She must find the monster within and destroy it.
However she’d most likely die trying.
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