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- Опубликовано: 19 янв 2017
- Dr. Adams discusses how diagnoses are generally made.... and why some are missed. Also: what most people have when their ferritin is found to be between 300 and 1000 ng/mL (Surprise! Hemochromatosis is fourth on the list.); the percentage of individuals with hemochromatosis who have type 2 diabetes was found to be the same percentage as in the general population.
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After years of Zinc supplements I suffered with iron disregulation/overload due to Copper deficiency. I had aging skin, grey hair and extreme fatigue along with other serious health issues. I stopped zinc and took Copper for several months and all symptoms were reversed. I am now in good health 😊
This was a FANTASTIC lecture!!!! I’m contacting previous doctors so that are armed with this information and catch it in other patients!!
add to that the fact that doctors think they are TOO busy to really listen to people. Or they pin them with "fibrmyalgia or stress". once symptoms get bad enough though they have to listen.
instablaster.
Even when the signs, symptoms of the condition get so blatantly obvious to a chipmunk most of the so called "professionals" will STILL dismiss the facts and say nonsense like "we can't find anything" or they will give you a fictious label like the notorious made up IBS because they are too lazy to do their job.
I agree I suffered from fatigue and feeling run down for years . I was told I was overweight and had too much stress. My brother was diagnosed with hereditary hemochromatosis first .I had never heard of it.
My ferretin was 2400 and I had no symptoms. It was diagnosed from a liver function test
Hereditary Hemochromatosis, delivered first symptoms at age 35. Mild swelling in right index finger. Finally, first diagnosed at age 55 measuring 3200. Started monthly Phlebotomy increased to 3546. Current at 2899. Several more to go. Other symptoms include occasional cognitive confusion and anxiety. Knee and toe pain. Lowered sex drive. Fatigue. Early symptoms generally dismissed as day to day aches and pains. True, a lot of Doctors may not order ferritin tests when exams are conducted.
In a comment section elsewhere someone wrote in to say that cod liver oil can raise ferritin levels considerably. After taking clo he and a friend landed up in hospital with severe infections and sky-high ferritin levels.
Absolutely! I had many symptoms prior to being diagnosed and they were getting more and more painful very subtly as time went on. Many symptoms such as bad chest pains, excruciating leg cramps, arthritis in many joints including knees, hands and feet, etc. There was also alot of worry because I was wondering what was happening to me. Due to all this I believe that ferritin/iron levels should be tested whenever any signs of arthritis show. Many people suffer and sluff it off until the damage is done. In my biased opinion I think that an iron test should be part of any blood test, because there are many people with this disease. Since my phlebotomies started all my symptoms have gone except the arthritis stayed, but has remarkably gotten better. I have ate well and ran/jogged for many years now, still do, and believe that has helped me in many ways in my recovery from the symptoms of type 1 hemochromatosis. Sorry i went on so long covering some ground, but i want everyone to know there may be hope.🧲🩸💚
What 3200 you mean your ferritin level?
My son has a very rare form of hemochromatosis and i had to keep at the doctor to keep testing after his hemochromatosis test cane back negative. He was 15 and had no energy and was grey in colour. Thankfully the GP listened to me and sent the last vial of blood down to Oxford Genetic department and finally he was diagnosed with HC TFR3! He was the only person in UK with it in 2017. Very hard to find any information about his kind. If anyone reading this knows where to find some info on TFR3 i would be grateful ❤
Ty
My HH was found because I finally had a new DO doctor (who I decided to visit for my IBS which he diagnosed as chrons) chase my high liver enzymes (that i've had for years... and was just told to lose 10-20lbs). He found high iron, ferritin (4600!) and then I revisited my 23 and me info and found I had the gene from both parents. my skin isn't yellow/orange, I drink moderatly (2-3 a couple times a week), I have terrible anxiety and chrons disease (which was diagnosed as IBS years ago, wrongly). Libido has been down for years, joint/muscle aches, tired, etc.
Now my normal MD is helping me with phlebotomies and controlling anxiety/IBS. We started at every 2 weeks and noticed that ferritin doesn't move much, and hemocrit drops 1-2 tenths for each unit of blood (which he says should be a point, not a tenth). So we've switched to weekly phelbs and monthly labs. I feel tired the day of a phleb, but good for 2-4 days after and then I start feeling more tired, achy, etc.
That tired feeling you get is because your body is not reproducing red blood cells as fast as they should or it could be they are producing fast enough but blowing up before they can deliver O2
@@pabloblanco2656 adding magnesium and sodium (in the form of sea salt) may help with energy levels as well...also bee pollen for copper. Morley Robbins is a very good resource.
@@krogden4318 good advice for the guy that posted the comment. I was just providing an explanation to why he feels tired immediately after the blood loss
Can ferritin be in Normal ranges & misses the illness? Does Hughes Syndrome mimic Iron overload?
How can we reduce it
❤️
I was diagnosed with hemochromatosis (C282Y homozygote) late last year, but started going in for knee problem check ups for over a year now. Ferritin was at 2098 µg/l Oct 2020 and is now under 600 thanks to the phlebotomies I am so grateful for. I think testing for iron should be done whenever arthritic symptoms arise, but that is my bias due to my symptoms. Early diagnosis is very important to prevent future problems that can arise from this disease. May is hemochromatosis awareness month in Canada!🧲🩸🧡
Back to say that I've been on maintenance since about January 2022 and have become a blood donator as often as they let me(depends on iron level etc etc factors) give it so far. To all those that can give, enjoy giving blood, as they say it is always needed and can be a great way to maintain hemochromatosis too!💜🩸
Can you take IP6 it lowers ferretin..
@@vikkiprevette2934 I do not know.
EXCEPT there are other mutations that allow hemochromatosis, if one is hetero C282Y....
I think one of the tests could be clinical blood test example normal person after bigger amount of blood lost could show specific symptoms but in case suspcted hemochromatosis patients usually start feeling much better with extra energy better vision like new born.. Hehehe problem is that tests norms we have today r not standarised many labs & countries has different norms & methods. Our bodies r showing symptoms only few pays attention or know how recognize specifics of certain diseases.
Yes absolutely irrefutably true
Should I be tested if my brother has this ?
Yes 50/50 you've got it i have my sister hasn't.
I do have hemochromatosis .
It might not help. I have H and arthritis and I found that when my hands got painful and stiff I took pure potatoes juice a half cup every morning before I ate anything and in about a week my pain went and I was able to justify my 60%. Sweet potatoes are the best. Put the potatoes in a jucier
Potatoes made your joint pain go away ?
For years I had symptoms but each blood test was ok but I was saying to all drcs that I have it... Spots on hands brown skin right away at sun shining.. Terrible headaches at low pressure.. At beginning I was suspecting Addison which I still connect to it.. Just comes to mind could be hemochromatosis roots start with disfunction of adrenal glands & mismanagement of calcium & by that screwing works of parathyroid.... Just a thought bcs if that would be the case than by simply one DNA test we could find out root of many diseases which at present we often misdiagnose. Could that be beginning of cure or at least prevention of some cancers. Thx very informative wish to contact u.. Could I get ur email.. I study that for years... Long story
Hey
My overall skin gets darker day by day for nearly 1-2 years now
My age is 21 years , i have done hormonal test but it is rormal.
My skin gets darker particularly when masturbate .in last 3-4 months i am not go in sun exposure still my skin colour gets darker every day .
Is that any similarities?
Can you guide me what should i do
Why don't we screen babies for this . It would help to know for the future.
@@pradeeprevankar8760 I have same problem for my skin I think u need to go to se a dr
@@amybrock9840 no business for docs in the future..
I am curious whether impotence that is caused by Hemachromatosis will be back to normal after phlebotomy and reached healthy iron level.
It's been known to happen.
"Sixteen months after institution of aggressive phlebotomy therapy, serum LH, FSH, and testosterone were normal, and potency and libido had returned. Twenty months after diagnosis the patient fathered another child."
Good to hear that. How old is the patient at that time?
@@keanamuba "37-yr-old"
damn I HOPE SO
Why do some people have no symptoms? With high ferritin levels???
I thing I have this
@@zozansinde9610 want to talk about it ?
@@FEXAZb my phon # 5402169108 u can call me
Because it’s their normal, good/bad days, told is ibs, stress, no real investigations. It gets worse with age and we complain but no one gets it. I did a dna health test and uncovered it myself
can we talk ?@@villasoka884
I was tested. I’m at 700 on my Ferritin serum test. I’m thinking 40-80 is a good healthy range. I’ve been feeling like crap for years. All my other numbers are in range. Is this a bad level. I’m thinking it is, but can I turn this around. I’m 35
700 is high. Get it down fast with phelebotomies.
Did you test positive for hemochromatosis?
Use curcumin with peperine in capsules to help bring down levels. I take 3 capsules with each meal. Level coming down steadily
how are you doing now? are your numbers better now and did you find the cause?
First and foremost you need to know that labs have different equipment and different ranges so your starting point should be to get the same test performed BUT at a DIFFERENT lab and compare. If the results are similar than it becomes a matter of interpretation but if the results are drastic then you would know you can not rely on the results of any one lab and at that point you would need to have the same test performed at a third lab and go with the results of the two out of three labs that are closer to each other in results
The problem with this video is the fact he doesn't understand at what point is the iron too high? The simplest test, used by every doctor, is, the number of red blood cells you have, your hematocrit or hemoglobin, they consider them about the same. In meat eaters, high iron consumers, they have higher iron stores and higher hemoglobin, more red blood cells. They've also shown, inflammation found in meat eaters, low chronic inflammation, paralleled the rise in hemoglobin. Voila ..
Inflammation is found in every diet including dairy and plant based not just meat
@@user-uv7up4vg6i Dr. Jerome Sullivan RIP believed ferritin is not required. He believed the only way to be 'proof positive' there is no iron in storage, causing problems, is to lower the ferritin to zero.
@@user-uv7up4vg6i Five excerpts from discussions on the ferritin issue with Dr. Jerome Sullivan:
1] Achieving a zero ferritin is diagnostically useful. At a zero level of stored iron, we can be fairly confident that a state of iron overload is not present at the time of the determination. The only way to have any real confidence that stored iron is not contributing to a patholgic process is to remove it and see if the patient does better clinically.
Patients with hepatitis C or diabetes may have an iron overload in this sense without having the hemochromatosis genes or the classic histologic findings of liver iron overload. If you insist that iron overload exists only when stringent, traditional criteria are satisfied, you may not find a higher proportion of iron overload thus defined in the study population. Nonetheless removal of small iron burdens may result in marked clinical improvement.
Attached below is the abstract of an important paper on hepatitis C and phlebotomy. Even after all stored iron was removed and the liver function tests improved, removal of more iron resulted in more improvement even after ferritin bottomed out. I would argue that these patients had a clinically significant degree of iron overload even
though the amount of iron in question was microscopic in comparison with the amounts seen in traditional iron overload.
Studies showing that a certain percentage of patients with this or that illness have iron overload are deeply flawed. By only looking at massive iron overload these studies are blind to any important effects of lower stored iron levels.
Jerome L. Sullivan, MD, PhD
"A BIT of diabetes" ???,"A BIT of arteritis"???, this guy is drunk.