Genetic Haemochromatosis : Joint pain and arthropathy with Professor Patrick Kiely
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- čas přidán 20. 07. 2023
- Professor Kiely, Consultant Rheumatologist at St George's Medical School in London has been involved for many years in treating people with GH joint arthropathy. His research interests in the topic are continuing.
In this seminar he explains the current state of the art treatment for people with GH-induced joint pain, as well as answering questions from the floor. - Věda a technologie
I wonder how many people are diagnosed with Fibromyalgia but they have Haemochromatosis . Seems like quite a few similarities? Just a thought.
Me. I was.
@@amiosa35 I haven't gone for three test yet 23andme suggested I get checked. How are you doing?
I had a very high Ferritin level of 4580 diagnosed five years ago. I am now down to below 50 after many venesections. I keep my hands moving by playing guitar. My hips and ankles moving by walking or bicycling. I basically have arthritis all over. I’m 62 years of age now. Non-Smoker. Non-drinker for 23 years. Hemochromatosis has given me fibrosis of the liver. I take milk thistle and choline for my liver. My ALT & AST numbers are good - in the 20’s.
Thank you. Following a life of arthritis, osteo, serum pos. RA, being presented with two copies of C282Y and this information I have a greater understanding of my own progression over 40 years (now 67). See my haematologist later this week for results of Bone Marrow Biopsy, so kind of just hoping its 'just hereditary hemochromatosis', and not one of many other additional possibilities.
A very interesting and informative video - just watched it today 16th Aug. I would be very interested in being part of any associated research in the future. I have 2 copies of C282Y and problems with hip and feet. For exercise I mainly golf and cycle. Use Voltarol Gel and Paracetamol as pain killers plus turmeric oil!
I am 72, have had Hemo for 8 years. Have every painful thing discussed plus extremely severe fatigue. Ferritin got up to 4700 shortly after diagnosis. Medical care has been less than adequate. Find a good doctor.
Every interesting and informative
I thought the penetrance of c282y was 50-90 not 10%. What do you think about the oxidative stress caused by HH causing the body to express uric acid as an anti oxidant and this increased uric acid being the primary cause of joint cartilage break down? when does stored tissue ferritin get released, does serum ferritin have to be brought down low, under 30 for the body to see an iron deficiency and then signal the release of stored ferritin. Does stored ferritin have to be depleted before hemosiderin is released? Should we be bled when ferritin rises to 50 or above to be bled so we drop to around 20 in order to keep forcing the release of stored tissue ferritin and hemosiderin? Is this release from storage want causes serum iron and SAT% to remain high even when ferritin bounces between 20-50 and this will keep happening until stored tissue ferritin and hemosiderin are depleted and which point it can no longer be released into the blood stream to raise them. At this point will serum iron and SAT% will be back in sync and have a proper relationship to serum ferritin again? In the early stages of treatment does and stored ferritin and hemosiderin get lowered with each phlebotomy or does it remain in place until the body sees an iron deficiency, like when it does when we hit maintenance before those iron reserves are ever released since the purpose of storage is for emergency use when food and or iron in food is scarce.
Regarding diet, greatly diminishing the "nightshades" group of vegetables can yield benefits. These are high in the anti-nutrient s, glyco-Alkaloids and Lectins.
4 years now, my joints are really bad, and fatigue is server
If oxidative stress causes the expression of uric acid for its anti oxidant properties shouldn't people with gout who don't drink excessively be screened for HH and shouldn't people diagnosed with HH have uric acid levels tested and given med to lowered them to under 5, maybe 4 to prevent the joint damage and osteophytes that uric acid can cause.
My Dr said I have high iron, but when I give blood the tests are always in the normal range. What's up with that?
Get your ferritin tested. Iron may be ok , stored Iron is where the issue arises in form of Ferritin. You ideally want to be below 100. If you determine you are in the high 100’s you’ll need to begin phlebotomy. Barbaric , medieval way of addressing this but until crispr gene editing figures out a cure we work with what we have.
normal ranges are often ridiculous. Some labs just average what they see like they are too stupid to realize that usually blood tests are ordered when something appears to be wrong with somebody. Basically, they are telling you what is normal among sick people. Boneheads!
Why don’t you talk about Therapeutic Phlebotomy at all, also you think pain relieves works better than supplements? Story Dr the only things I like about this podcast was to keep the Ferritin level lower than 50. All those pain medicine have lots of side effects.