Symptoms
Posted , 7 users are following.
Hi i was diagnosed about 4 years ago and advised i one dominant and one less dominant gene and would not need venesection. My last iron profile a few weeks ago was 199 and ive been advised that it needs to be ovr 300 for blood letting..yet im suffering chronic fatigue joint paint stomach pain and ive a yellow tinge to my eyes and more lately ive a skin itch.in fairness i manage well and i do be careful with food intake but past month i go to bed exhausted and get up exhausted ive started taking zinc and magnesium and vit b12 but no energy increase as yet ..id welcome any coping suggestions because im struggling. I also work long hours so its very challenging.
1 like, 12 replies
ellen12819 framac
Posted
Hi and happy new year.
I take enzyme Q10 capsules this enzyme is naturally in your body. .. but in us with "HH" deplete it quicker than people without HH. It helps with liver and the exhaustion. (Boots chemist in UK have get three vitamins and the cheapest is free on at the moment ) I can say my specialist was pleased that I take it and advised me to take the highest one a day one that they sell, it is expensive so I buy 3 months at a time and it gives me one lot free. Other than that I take omega 3,6,9, combined one a day to make up for the fish and sea food we are advised is no longer good for us. If you still feel awful just go and give a blood donation at the next blood van you see. I wish you good luck, there are some really knowledgeable people here who have been dealing with all aspects of this disease for years and I am sure if anyone knows of other things to do they will answer you.
framac ellen12819
Posted
I have been a blood donor since turning to adulthood but told on diagnosis that i was no longer allowed to give blood at public donations but only at a specialist unit in Belfast. I will try your suggestions for supplements. Ive only really started to research into it now because my symptoms getting worse.
ellen12819 framac
Posted
I was under the impression that unless you were high enough for Venusection's you didn't have to declare the condition. Sorry if I gave you incorrect advice. No wonder your numbers are raised if you were taking the top off each time you donated it would be equivalent to a female having a period... disguising a true reading. There seems to be a lot more info on the Canadian sites for HH. Diet advice that I have /am still using, far superior to any in UK.
Pudding80 framac
Posted
My hematologist does not like my serum ferritin to be above 50 as she says I will have symptoms so she organises my venesections to keep it below 50.
When my ferritin level was high, say above 90 I had stomach and joint pains, itchy skin and a tendency to fall asleep at the drop of a hat in the middle of the day for about 10 minutes.
Your symptoms sound worrying - and I would be worried about yellow eyes and extreme fatigue.
Can you not ask your GP to refer you to a haematologist so that you can be properly monitored?
framac Pudding80
Posted
ruth51315 framac
Posted
Hi framac,
The NHS in UK won't venesect me either and my last reading was 247. I had to really hassle my GP to refer me to a haematologist and then the haemo refused to grant me an appointment, saying that my levels were not high enough to warrant one.
The blood bank refused to take my blood too because I have several other conditions and take a lot of meds for them. My knees are SO painful, I am so desperate I have googled how to take my own blood. Haven't tried it though!
When did you last have liver tests done? The reason I ask, is because high bilirubin levels can cause skin itching and a yellow (jaundiced) tinge to the eyes, and de-ranged liver function might contribute towards fatigue.
I, too, take all the supplements that Ellen mentions and find that I am less fatigued with them.
Regards,
I really hope you
framac ruth51315
Posted
Not sure about liver function test i recieved my total iron profile and wasnt broken down. Yeah id contacted GP last wk and i was advised profile would need to be 300 before the haemtologist would see me again..nut theres no suggestions as to how to cope with symptoms.
Chrisbrill framac
Posted
Hi there, I have two mutations on the HFE gene and I load iron. I'm a member of the Genetic Haemochromatosis society in Britain. There's also a Facebook page where you can post questions and a support group on Facebook too. Which mutations do you have.. You say one dominant and the other not.. Is it C282Y and H63D?
framac Chrisbrill
Posted
kristin07815 framac
Posted
I don't want to alarm you, and it might not be, but unfortunately, your symptoms might be indicative of liver disease. Especially, the yellowing of the eyes. I would recommend that you see a gastroenterologist as soon as possible.
sheryl37154 framac
Posted
Other issues you should eliminate, is insulin resistance and fatty liver (scan required for fatty liver).
miller.jones framac
Posted
First thing is go to GP and get a full work up anything could be the cause of this and only tests will show this. (don't worry about your numbers 199 is fine for now)
I wouldn't take anything without getting tests a lot of people do this and taking boosts can make things worse because you could be overdosing on those.
Next you will feel more drained because you are worried this is natural and something people do not even think off plus with your long hours you are putting a big strain on yourself mentally and physically.