8 weeks and 8 phlebotomies

The only change I've made is cutting down on red meat and only drinking red wine. I read that red wine inhibits the absorption or iron.

Yeah red wine is best to drink if you are allowed unfortunately for me I have severe cirrhosis due to the iron stored in my liver so no more champagne for me , no alcohol for life but hey that's ok. I guess it was building for 15-20 yrs without being diagnosed

Lynnsk1 - a while back I came across research that indicated that milk thistle is not good for someone with liver damage caused by HH.  Also, there was a case study which found that the taking of milk thistle was exacerbating the problems associated with haemochromatosis.  Try googling "milk thistle and venesections".

 

I started taking milk thistle and my TS went from 57% to 87% in a fairly short time,though it could have been a coincidence.

Yes, interesting.  I should have made a note of when I stopped using milk thistle myself to see if there were any notable differences.

 

I had venesection today both going down slowly but I did read re milk thistle and I had read about the women who took the milk thistle but it was just one person they reported on and also she was drinking soda and taking pain killers so I think milk thistle just got a bad rep. Apparently no studies should be equated over just one person. Anyway I'm gonna buy NAC supplement tomorrow & glucothiane as they look very interesting as try to changes every genetic cell each cell had a brain so worth a try . Brains are powerful things we humans are lucky enough to have. So gonna give it a try. I am a body worker ( pilates, somatic coach, massage therapist etc) so worth a try as no one else in medicine proffessdion seem to know

Yes, that was a case study.  However, there is other evidence that milk thistle for HH patients may not be good for us.  That is why the drs who wrote up the case study asked the patient to stop taking it.

 

Sorry, I meant to ask you to let us know how you go with the NAC, etc.  I tried it a while back but can't say I noticed anything except the cost which made it difficult to continue long term.

I would really love to try Meldronate/meldonium, the drug that Maria Sharipova got into trouble for using.  Its described benefits seem to address a lot of my issues!

 

Hi SherYl, I'm due to go tomorrow for my weekely VS , last week I felt a bit faint, hot & sweaty but had a glass of water & recovered quietly, they told me next week they gonna check my hb first as was 120, hope it's ok as need these VS done. I ran out of. Mild thistle & Alpha supplement so thought I'd wait as had tests taken last week so will get them tomorrow when I go, hopefully I'm still decreasing, will let you know my results re NAC e, curcumin etc as still taking those. Funnily enough I've got my ache back in my abs (liver) just a bit so not had that since I started VS with all the supplements etc but I was pretty rigid on what I was putting in my mouth (iron intake) & drinking milk with my meals, drinking tea etc. Fingers. Dossed for tomorrow. I did have X-rays on Friday & the X-ray lady asked when I have my apt with consultant...I know they are bad coz they are painful and I asked for the X-ray , my knuckles on index & middle finale are permanently swollen and painful and also my wrists don't bend into extension very well, I teach Pilates so can't lay my hands felt on floor when in table top position so will have to wait for that outcome, also nothing to do with my cirrhosis other than hoping my lstorage levels coming down and not storing anymore at the moment. After reading comments I hope iron will be taken from my organs or overload store !!! 

 

Hi lynnsk1, I must reiterate that reducing foods that contain iron is not recommended by HH researchers.  It results in low Hb and makes venesections a problem.  A full venesection is said to eliminate the iron in 50 red meat steaks, so reducing your iron intake is unnecessary.  Of course, taking iron supplements or foods with added iron is off limits, as well as vit c with food.

Milk thistle for those with HH can be problematic, and curcumin also has no truth in reducing iron uptake.  There are only 34 mg tannin equivalents in 100 grams, while there is 1400 mg tannin equivalents in 100 grams of walnuts, and 55 and 60 in coffee and tea respectively.  The only proven iron uptake reducer is calcium.

"One boiled egg can reduce absorption of iron in a meal by as much as 28 percent."

Oxalates are found in spinach and kale ......  Oxalates impair the absorption of non-heem iron which explains why the iron in spinach is not absorbed.  Quotes from The Hemochromatosis Cookbook published by the Iron Disorders Institute.

In fact there is often an iron absorption inhibitor in most foods, that one wonders why we end up with iron overload.  It is that hepcidin that does not work for us with HH.

Unfortunately, researchers say that once joints are damaged by HH, they don't get any better with venesections (but maybe not worse).  Although there is a contributor on this forum who says that haemochromatosis has nothing to do with it.

Weekly venesections will reduce storage in your organs, that is why I look forward to them.  

 

I just went back to earlier posts, and apologise that I have repeated myself.  Venesections have not improved my memory!!!

I bought the cookbook,although it's American, therefore totally different way of cooking but it does give you different highs and low iron information. E.g using green tea stock to cook veg or chicken etc. In . I will take another look as snack ideas helpful. When I first started I list about 12lbs in weight but my GI said weight loss for cirrhosis is not good but really it was down to watching foods and decreasing the portions, since then I've increased my intake. I'm actually a very healthy eater as I'm a good cook too , always been a foodie so I'm top of my nutrients.Will see how my VS goes today and then post my results. Thanks Sheryl, you are so very helpful with your personal amount of knowledge.

I can't say I got into the recipes either.  Interesting idea though, about marinating meat in tea or coffee first before cooking.  The most important part for me was all the information before the recipes which confirms what we can eat and what to avoid, and why.

Good luck with today's results.