Posted , 7 users are following.
Myself and my two brothers are all homozygous C282y
Myself and one brother have high ferretin, iron and saturation and therefore have regular venesections.
However, my other brother has high ferretin (700) but normal iron and saturation levels. His doc has told him he needs no treatment. I dont feel this is correct advice.
What is everyone elses experience ?
0 likes, 9 replies
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sheryl37154 Cebby78
Edited
Does your brother not being vx have an issue that causes infection, inflammation, etc. If so, his high ferritin is not being caused by his haemochromatosis, but is being caused by that issues, and that issue needs to be investigated and addressed in the normal way.
Having said that, there is no problem having some vx, same as people who don't have haemochromatosis and donate blood.
His dr should explain why, and your brother needs to ask for this explanation if he has not already done so, even telling his dr about yourself and his brother assuming you are going to different drs.
Is his Hb in the normal range? If so, the dr is correct not to vx, and the dr should be investigating that also.
It is well experienced that not all drs know what they are doing with haemochromatosis and if your brother gets nowhere with his dr, he needs a second opinion.
dawn50740 Cebby78
Posted
hi Sheryl
I am newly diagnosed. I am not homozygous but have the two different mutated genes. I don't think my doc knows much,if anything,about the disease. Not sure she is even qualified to diagnose this. She told me I am the only patient she had ever had with that high of ferritin. My ferritin was at 930 and saturation at 40 percent with Hemoglobin at 16.5.
Are you saying that I should not be doing phlebotomy? Do my numbers indicate this as a secondary problem to something else?
I just had my third phlebotomy. I feel terrible all the time, but that is nothing new. Ive felt very sick for a long time now. Complete exhaustion after the phlebotomies with severe shortness of breath upon walking is new. Big heart palpitations when I stand up.
My liver enzymes were quite elevated for almost a year but have gone down practically to normal after 2 phlebotomies.
Please help. I feel at a loss.
sheryl37154 dawn50740
Posted
I did not say that at all regarding phlebotomies. I was referring to the information given to me by Cebby regarding her brother and I said there was, in his case, no harm in having phlebotomies, or donating at the blood bank.
I assume your dr actually did a genetic test for haemochromatosis, but you don't say what HFE genes were discovered. There are different ones. If I assume that you are C282Y/H63D (like my son), your TS% is below the range that indicates haemochromatosis.
If you have liver problems then most likely a lot of your ferritin count is caused by inflammation of the liver, and that should be addressed, as that would be making you feel unwell. Is your Hb within the reference range when you are due to have a vx? If not, do not have one until it is. If you are C282Y/H63D, then phlebotomies are necessary but perhaps spaced further apart. If you still feel terrible after vx, try having a lesser quantity drawn, e.g. 350 instead of 45-500, although that may mean you will have to stick to at least 2-3 monthly.
Of course, the golden rule is to drink plenty of fluids the morning of the vx, some say the day before too. I have also read that milk or a drink with some substance in it (like even watered down milk, I drink soy) keeps fluid within the body. I tend to pee water out just as soon as I drink it.
You need to educate yourself by contacting your country's haemochromatosis organisation, ask them to send booklets and brochures to you, give a copy to your dr. and learn more than what your dr knows about it so you can be proactive.
Always ask for copies of your blood results (including your genetic test), so that you can keep tabs on it for yourself. If you are used to eating red meat and greens, keep doing so as you need to keep your Hb healthy. Just don't have red meat for every meal. Ask for a test of your B12 and D3 to make sure they are in a healthy range. If not, ask for B12 injections (tablets don't work for some people, same as Vit D.) If low in Vit D, buy a practitioner's brand of Vit D3 forte drops. Vit C is a necessary anti-oxident, so have a tablet last thing at night when food has moved on from your stomach. Don't drink vit C juices with meals, but foods high in vit C are ok because they are whole foods with fibre.
Perhaps you should see a cardiologist if you are breathless when walking and have palpitations. I must say that before and shortly after I was diagnose I found that I had the same and it felt like I was trying to walk through quicksand. I also had arrythmia and chest pain. I did see a cardiologist before I was diagnosed, who found nothing. However, these issues gradually dissipated after I was diagnosed with GH and had vx.
But everyone is different, so a check up in that department would be sensible.
Please feel free to ask more questions. Good luck.
dan08187 sheryl37154
Posted
Hi my name is Dani , ive had some high iron and done phlebotomies , lately my liver is with inflated , wich DR or treatment should i use ?
thanks
sheryl37154 dan08187
Posted
Hi Dani - Do you mean inflamed or enlarged? What does your dr say? He/she should be telling you what treatment is required, or refer you to a gastroenterologist.
If you have been having phlebotomies (you don't say for how long and what your ferritin level is) then something has happened to cause damage to your liver. Perhaps review your intake of alcohol. This can cause the most damage to your liver.
Entwicklung34 sheryl37154
Posted
I can see this was posted a long time ago but your post was really helpful to me as I too have trouble breathing on activity and heart palpitations and chest pain at the moment. I'm hoping my doctor can get this sorted asap and can begin removing blood as necessary.
jax15282 Cebby78
Posted
where do you and your brothers live? Different countries seem to follow different protocol?
Cebby78 jax15282
Posted
we all live in Sydney, Australia
jax15282
Posted
i will try to find an article that I recently read....re a pretty strict criteria for therapeutic phlebotomy in Australia.
I am Canadaian and although my initial tests revealed elevated ferritin(> 1000) and
TS (>70) doc would not prescribe phlebotomy until genetic blood tests confirmed hereditary hemo...2 month wait.
Check with your Hemochromatosis Society it may have been their article.