Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hi! I'm a 34 year old female who was diagnosed a year ago and I’m still trying to figure all of this out. I've been experiencing full body muscle, joint, occasional nerve pain and extreme fatigue for years. I finally found a naturopath who though to check my iron. It's an amazing feeling to be validated and to have an explanation for all this pain. I’m not crazy!! I started getting phlebotomy every three months and then every two, and now I'm in need every 6 weeks. My ferritin levels have normalized, but the phlebotomy seems to be the only successful treatment for my discomfort. Is this something that others have experienced?
The one thing that has been troubling me about these frequent phlebotomies, is my age. I already have slight scarring on my arm, but my veins are totally fine still. What happens in 10-15 or even 20 years from now? Veins do scar eventually, and eventually they get to a point where you can’t use them. For those who’ve been dealing with this for years, do you ever get to a point that you don’t need phlebotomy for pain relief? Have you experienced any of these concerns I’m having, or am I over-reacting to a non-issue?
Thanks for your input!!
hope your getting back to your old self, that's what I would like for myself..anyway best wishes
Sion
I have been having phlebotomies / venesections since September 2014. I was worried about the problems that might be caused by scarring so I switch arms each time. There are alternative sites (ankles, groin) in the body should this become problematic.
I make sure I drink plenty of water before having a phlebotomy - this seems to reduce the amount of probing around with the needle and hopefully there is less scarring.
There is no cure for HH so to avoid damage to the joints, liver, heart and pancreas phlebotomies need to be carried out for life. In the UK haematologists seem to aim to keep serum ferritin levels below 50.
We can never avoid eating iron altogether so the best we can do is to reduce our iron intake and avoid eating out of iron cooking pots and stay away from iron products in the air (e.g. restoring metal furniture; iron-based powder for cleaning jewellery).
Christine
Thanks for the input! Good advice about keeping hydrated before tp. After I posted I presented the question to the phlebotomist I saw at my last bloodletting. She informed me that veins don't typically scar (or at least not to the extent I'm concerned about) from removing blood. Veins break down easier when stuff is injected in, especially toxic drugs. So those of us who have to have lifetime bloodletting theoretically should be fine.
I also want to thank you for opening my eyes to something I was blind to, and in slight denial about. I, until yesterday, was a cast iron cooker. I had been collecting pieces my entire adult life and my whole kitchen was cast iron. When I read your message my heart broke, but thank goodness you brought that up! It's totally obvious but I just didn't put that together. After reading your comment I started doing research and was blown away by how much iron is put into foods while cooking in cast iron! So sadly I sold my entire cast iron collection yesterday....my perfectly seasoned pans with years of delicious food and memories...sigh....to a nice couple with cast iron experience, and I plan to go shopping today for some stainless steel.
Many blessings and thanks again for taking the time to help out!
I was diagnosed at 28 and have been getting "drained" for almost 3 years now. I also have worried about the long term effects. My uncle was diagnosed at 42 and has been doing treatment for about 20 years, his arms do not look all that attractive. Personally, I make sure to use scar cream on my arms when I am doing treatments more often and then I drink as much as I can before and after so that the number of sticks is reduced. In the beginning my phlebotomist used a soft IV life attachment to drain but they discontinued the use of them and now its just a needle.
I have never met another young female going through treatment before except my sister who started treatment a few years after me so she is still in the trial and error stage. Do you struggle with extreme fatigue after a treatment? I have gotten better with them but in the beginning could not stand up without fainting for about a week. Now I can manage after a couple days. Sometimes I tell myself I am being ridiculous but there is definitely a huge impact the night and a couple days after a phlebotomy. It doesn't make sense as people who donate blood do not experience this extreme.
Also- it has been about 3 years now and sometimes I think my body is trying to be more normal. Random but short periods are creeping up after over 3 years without one, weeks of extreme energy pop up, etc. Any chance this has been happening with you? Thank you for posting! Everyone at my hematologists office is much older and do not have similar concerns or have been going through treatments for years.
Some people have a very difficult time having phlebotomy treatment. I have read posts on this site about people being hospitalised and in the phlebotomy clinic that I attend there are a couple of people who said they had fainted.
I hate having the treatment - it hurts, even when there is anaesthetic cream applied to the site for half an hour in advance. I have seen some people in the clinic having the phlebotomy without anaesthetic cream but I don't do this after the first time. Apart from the first time which was a huge shock, I generally feel a bit rough afterwards then a couple of days later begin to feel really good.
My veins do seem to be always prominent on each arm now and I am sure they were not like this before. I was pleased to read there may be less scarring as there are no chemicals being introduced. I don't like the thought of having phlebotomies from any other part of my body.
I hope you are both doing well - and sion10 and Star12 too.
Christine
I'm a recently diagnosed 45-year old female and just began phlebotomies. I also experience extreme dizziness. The nurses suggested smaller units could be drawn since I'm small and a bit underweight. The specialist has agreed to smaller blood draws—but more frequently
Some people are more affected than others and I am sorry to hear that you are.
My blood pressure is usually the low end of average and my haemoglobin count is almost always at the high end of average - maybe these enable me to better manage the treatment but I don't know for sure. The only time that I suffered greatly was the first time - I was so shocked. I had the first treatment in the morning and the nurse told me it is easier in the afternoon. I always have my treatments in the afternoon - I have found 3 pm to be the best time.
If you are small you will probably have less blood in your body so if a pint is drawn, it will be a bigger percentage of your blood volume - your phlebotomist should know if this may be a reason.
Anaemia may also be a reason for this - are you anaemic?
It is always best to do the most that you can to help yourself so I suggest you always have a wholesome meal the night before, and breakfast and lunch before treatment and drink plenty of fluids the day before and on the day of treatment. Also, have your treatment in the afternoon.
I hope this helps, Christine