Unanswered questions

Hi Scootay

I wanted to reply to your post because it sound s so similar to what I have been through myself.

I was diagnosed last September and began treatment in January.

I had been feeling permanently exhausted and had painful joints. I couldn't concentrate and kept forgetting things. I'm a school teacher and was struggling to cope with my work but didn't want to take time off.

My social life stopped as I had no energy or inclination to do anything.

I have now had six venesections and feel so much better. I have more energy and have started making plans again.

I am coping better at work and even my joint pains are not as bad,

I just wanted to let you know that your treatment will help and hopefully you will feel better soon.

My levels were not as high as yours. My TS was 94% and my SF 750. They are now 33% and 137. I have biweekly venesections not weekly.

I hope this has been of some help.

Scootey,

First off, your doctor that told you fatigue isn't a symptom of haemochromatosis is an idiot.

Fatigue is the biggest giveaway of having high overload so don't you dare listen to them. When I first started my iron level was only at about 600 so that's around half of what yours is. I was told I would need phlebotomies once every two weeks and I needed to have that done for two months before it changed to once a month, once every six weeks, once every eight weeks, etc. (just for your reference, I was diagnosed in 2010 when I was 21 and I'm now 24 and I rarely need phlebotomies anymore - this could be due to my young age and my body adapting very well to treatment because zero damage had been done to my body).

I completely understand your plans falling through, however. I can't remember the last time I wasn't tired all the time, it's so, so awful and everyone just thinks you're being lazy or exaggerating but when it's your day off and you sleep in until 2:00 unless someone wakes you up, clearly something is wrong.

I can't say how long you'll need to get them done all the time, it really depends on the person. Like I said, I only needed four phlebotomies once every two weeks for a period of two months before they extended my time in between. Is the force that you work on accommodating to this at all? I'm not sure where you live, but one of the outpatient clinics that I go to does phlebotomies as late as 7:00 pm and they begin them at 7:00 a.m. so it's easy to work around your work schedule. Do you have anything like that where you live?

And what kind of side-effects are you experiencing from them? When I have my phlebotomies, first off, I need an IV because I drain so fast and I'm a petite woman (just under 5'4'' and I'm 121 lbs) so the amount of blood coming out of me is just too much without so I'll pass out, but other than that I feel pretty much fine afterwards. A little bit light headed for a couple hours, but then I'm alright. What symptoms are you experiencing?

In terms of working blood tests around, where I live we have Dynalife and you can make appointments at lunch time, over the weekends, etc. Is there anything like that around you? How much research have you done and have you pressed your doctor for resources? There's no shame in being pushy and explaining your work situation.

In the end though, as much as it sucks, sometimes your work has to suffer for a short period of time. It's so, so important to take care of this asap and nip it right away so that you limit the amount of damage done to your body. I was lucky as the law firm that I worked at at the time was very nice about me leaving early and having to get them done. I really hope that the force you work on is very understanding. After all, the sooner your levels drop to a good rate, the better you'll be on the job, and that's important to not only you, but them as well.

Let me know!

Oh dammit, I spelled your name wrong. Scootay**

Thank you both for your replies; my venesections are weekly at the moment. I tend to feel fine afterwards but dizzy and wiped out the following day, hopefully this will improve. I did enquire into after work appointments but my local clinic only do them mon to fri 9am - 3pm. Thankfully work have said go when you need to go.

Cheers

are you hydrated and have you eaten enough before you go and get them done? i always make sure i've eaten within about two hours and i drink water like a madwoman the day before and the day of my phlebotomies and i sometimes get a doughnut afterwards to make sure i have enough sugar

Hi Scootay, Megan is so right and it will take time. My supervisor made it difficult for me to take time out for venesections by telling incorrect stories behind my back, making me feel very uncomfortable, as if I was guilty of some misdemeanor. I used to work for hours after hours to make up for it, mainly because I had such a heavy load that I had to do that to try to keep up anyway.

The quicker you get that toxic stuff out of your organs, the healthier you will be and reduce the risk of long term complications - venesections are a whole lot better than chemo, transplants and heart failure! Think positively about it. Each venesection removes approx 25 ug/l, that is as much iron as in a 2.5" nail. You will do enough to build a new kitchen before very long.

Request copies of your blood tests so that you can keep any eye on them yourself.

Contact your country's Haemochromatosis association and get as much info as possible - leave some around the station for others to read. Google Haemochromatosis and ........., whatever your problem is. Educate yourself so that you know you are being treated appropriately.

The Iron Disorders Institute in the US has a lot of very information information. I am from Australia but I find the IDI has a lot of easy to read answers.

... and fluids after too. Some people like hydralite fluids, coconut water replaces these as well.

Best wishes

I found out 7 years ago that I have haemochromatosis - I was living in the USA at the time and my

phlebotomies as they call them there were every 2 weeks for several months and I did feel tired in the

beginning (couple of months). After approx 6 months I returned to England and had a couple more

venesections (UK term). Since then I have been monitored by the consultant at the hospital - a routine visit

once every 3-4 months to monitor my blood. I have a form that I take to my doctor to have blood samples

taken and then at the appointment I am advised whether I need to have blood taken by venesection. I

would say that I now have blood taken once or twice a year. I too was worried in the beginning, but it did settle into a routine that is quite easy to fit into my working life now. My appointments happen in my lunch break.

Also advice as given earlier I would agree with, drink plenty of water the night before and day of the

venesection as makes the process much quicker and easier. Good luck !