How to reduce Iron Levels without blood draw...special circumstances.
Posted , 7 users are following.
A year or so ago my cousin was diagnosed with haemochromatosis and after that we all got tested. My brother tested positive with the DNA test and blood work came back with high ferritin and iron levels. All my moms sisters are carriers, as are their husbands but none of them have both. And of all of us cousins that have it those diagnosed are also those that various forms of mental handicaps. While some are able to have blood drawn to lower levels, others like my brother are not. Just to have his blood drawn he had sedated with oral pills and anti anxiety meds (snuck into food and drink) and then sedated in the hospital waiting room by sneak tranquilizer shot and then completely put under by IV. This is how he has his teeth cleaned and any similar procedure. He is in his early 30 and is 6 foot, so its not an easy task and not something that can be done weekly or monthly for blood draws. There is concern of build up of anesthesia med in his system, him hurting himself, and the $1500 cost per hospital visit for this procedure as medicare doesn't cover it. I'm reaching out for any help or advice that can help lower his iron levels naturally. He does not eat red meat, and the folks have already cut out soda, vit C, and processed flour. Has anyone had success with natural remedies, like milk thistle, or anything that helps detox the body from Iron or metals. We caught this somewhat early and completely by chance, but if he was a "normal" person he'd be having blood drawn every month as his levels are that high.
thank you so much for any help or advice, as we are all new to this and struggling to find the best solution for my brother.
2 likes, 14 replies
ellen12819 sarah29900
Posted
This is so rubbish for him and i do hope you get the help required . A recent study on PPI's is available from the British Haemochromatosis society to download. I would get this to show his doctor they really need to be taught by us as they don't have enough knowledge as a rule. Good luck. X
sarah29900 ellen12819
Posted
Ally01381 sarah29900
Posted
sarah29900 Ally01381
Posted
Thanks, unfortunately my brother doesn't eat fish either. But thanks for the tip!
marie86421 sarah29900
Posted
Hi Sarah
There is something called Chelation Therapy. I don't know how the therapy is administered but you might be able to google it and see if it would be a possibility.
Good luck and best wishes
Marie
sarah29900 marie86421
Posted
miller.jones sarah29900
Posted
There is no other safe way to be treated.
You may find information about some other treatments but one of the drugs used has to be administered in hospital over few hours with iv so that is not really an option also it is very expensive and not very pleasant.
The other which is a pill is not that good it binds to only one type of iron plus it is known to cause health problems and not any doctors i have spoke to would even class that as an option.
The cheapest and less hassle is venesection (I know it appears difficult in your case but you have no other option also it's not that bad he may get used to it and depending what his numbers are he might not need to go often)
You can try diet changes but this is not going to stop the problem and it does not get rid of the current stores already in the body.
sarah29900 miller.jones
Posted
Hi, thanks for the info, however in this situation venesection isn't exactly the cheapest or the option with less hassle. I wish that I had hope that over time he would get used to having blood drawn but he has actually gotten worse and it takes more and more drugs to sedate him and then longer to recover. This last time it took him 3 days to stop throwing up and to get rid of the migraine from the cocktail of drugs. This time to have blood drawn, his liver checked, and teeth cleaned it took 2 shots corned in the hospital waiting room to get him sedated enough to put in an IV and my mom was injured in the process. And this was after a failed attempt 2 weeks before. They also have to travel to a hospital an hour away because their local one will not contract with their insurance (for what little is covered) for this type of approach to treatment. If he was younger or smaller it would be easier, but he is a grown adult, is very sensitive to situations, and does not realize his own strength. He is very aware of what is going on and it is getting more difficult to "trick" him into the hospital. We will continue to try and figure out a way to have venesection done, but until a better solution to getting him ready for the procedure is found we are looking for options to lower the risk of damage. I do appreciate the reply and will keep in mind what you mentioned about the pills and their risks! Thank you!!
sheryl37154 sarah29900
Posted
Hi Sarah, you have such a difficult dilemma. Read up on Exjade (must be medically controlled) as an iron chelator to see if it might be appropriate for your brother. Any risks or unpleasantness is probably less that what he is going through now.
How high is his ferritin, his serum iron, and his transferrin saturation %? Does he have liver or heart damage because of it. There may be some perspective needed on this. If it is not that high, get another opinion. Some drs go overboard with haemochromatosis, and some go "under board, as a lot of us have discovered.
Keep in contact as others may come up with new ideas. Contact your country's hemochromatosis organisation to see if they can help in any way.
Good luck.
miller.jones sheryl37154
Posted
If you do research and speak with Professionals they will tell you that drug is not for haemochromatoisis.
The way to look at it is if it was so good why bother to have people coming in for treatment via venesection every 1-2 weeks when you could just give them a few pills
sarah29900 venesection is the cheapest this is why it is used I even discussed this with staff today the other treatments for this are triple the price and have high risks otherwise why would they go down that route they wouldn't cheapest option is always used unless you are in US and looking to get big insurance payouts.
It's a tough spot you are in but try alternatives my mother used to work with handicap children/adults who was the same and they found just knocking them out is not good long term solution as you are finding out they tried ways to distract and educate them into making the process easier.
sheryl37154 miller.jones
Posted
Strangely then, the haematologists/oncologists at the hospital I attend used Exjade for iron overload patients with severe difficulties venesecting. They even gave me a CD on its use to show my support group - none of which had severe enough difficulties venesecting. They don't use it lightly because there are some side effects with it. However, I do believe there is a newer (better?) one available now.
There are two types for different types of iron overloading, and having googled it, there are constant references to it being used for iron overload. It was talked about at a HH conference I attended in 2016.
I sounds like Sarah's cousin is way beyond distracting. He is an aware adult and very strong. Sarah also knows that knocking him out frequently is not the answer either, so she is desperate for an alternative.
It is an option that Sarah or her cousin's family can discuss with his haemotologist.
ellen12819 sarah29900
Posted
Just a thought, couldn't the GP prescribe a sleeping draught to take at home so he fell asleep before he got there, and a nurse in the doctors office draw the blood. It seems so unnecessary, once diagnosed he just needs to have blood taken locally even at home. The only thing they need to do is provide a nurse to draw the blood it needn't be in hospital. I hope someone wakes up and gets him the best assistance soon. 😕😢
ruth51315 sarah29900
Posted
I am in the UK and although I don't take them myself, I do know that iron chelators which you take orally do exist. There can be side effects but it might be worth asking your cousin's doctors if he could try these instead of going through the awful palaver which he has to endure at the moment.
carol28050 ruth51315
Posted
The drug isn't licensed for the treatment of Haemochromatosis in the UK so only prescribed in exceptional circumstances. This case I would have thought would be considered exceptional though.