I still feel fatigue

thank you for your reply i have been to see the specislist today and shes sending me for a bowel scan shes also put me on folic acid she did say my irons are lower then they should be, hopefully it will get sorted out just dislike feeling tired everyday

thank you again for responding to my post this is all new to me, my mum & dad were both carriers

ally

Good luck. Let us know how you go.

The gastros like to own it, but it is a metabolic iron disorder. For some people it goes to the liver, and for others it does not. It was certainly brought to a dr's attention last century when he diagnosed non-alcoholic women with cirrhosis of the liver. Other symptoms were probably ignored or given other reasons for existing before then. Even so, my dr in 1989-1998 was not sufficiently aware of its existence to diagnose me until my hips broke up from avascular necrosis. My liver was fine. Can't say the same about my heart and other organs.

I was so fatigued I was staggering and slurring at work - there were probably whispers I was having a 'sip' now and then. The pain in my chest/heart finally dissipated with vx, the fatigue lifted slightly but really the only relief I got was when I had to stop work to look after my husband with Hodgkins Lymphoma in 2004, although that took some work too, but at least I did not have to get up at 6am and I could have a lie down with him during the day. A lot of time was spent on his treatment at the hospital and preparing foods that he could eat/swallow. But I realised how much easier it was for me. He is homozygous H63D and I am homozygous C282Y.

My Ts% remained close to 100% for years, but I also think the damage was done in those 9 years when I was undiagnosed and not all could be undone. The liver does mend if it has been affected. After reading French research (they must get good funding), they recommend CoQ10 and Vit E to help mend the mitochondria that is damaged by HH and high TS%.

Because my veins were going on strike after a few years, and my blood clotted too early, I decided to take 100mg aspirin per day to thin my blood. This worked well, but a side effect was I felt lighter and walked faster. My layman's theory is that it flushed stagnant iron out of my cells. I have not read any research on it. So that is just my experience.

Is your Hb within reference range? Some people stop eating red meat and green vegetables and any natural food that has iron in it (every food does anyway). This causes low red blood cells (Haemoglobin) which then makes a person weak and tired. A vx will remove the iron contained in 50 steaks, but best not to eat that much anyway (who can afford it these days?).

Although my Vit B12 is within normal range, I do get a lift from a 3 monthly injection. My husband was not absorbing Vit B12 from food or tablets, and was deteriorating from fatigue, weakness, and dreadful depression for which medication was not successful. Finally his dr thought of B12, and after his second weekly injection, he came home humming and was a different man.

I can't absorb Vit D even though I live in the tropics, even with tablets. My dr recommended a practitioner's brand of forte drops. Again a marked difference.

Actually after years of talking to others, I think that our hypothalamus is the first affected - it is very sneaky. You need to read up on what the hypothalamus regulates, and most of all the effect on hormones. So check if your pituitary gland hormones are in order. I was eventually diagnosed with a small pituitary gland tumour which badly affected my hormones. The hypothalamus is just above the pit gland, and both absorb iron.

We have to educate ourselves in order to get the best treatment from our dr because they mostly do not have a lot information about it. Always read medical research rather than take the word of blogs like this. Because I did not have liver damage (perhaps fatty liver which does not show up in blood tests - it requires a CT scan to be recognised), I did not go to a gastro. Instead, I go to a haemotologist/oncologist who at least has a good knowledge of blood. They do not always know the nitty-gritty of HH though.

We can clean up a fatty liver by eliminating sugar and starchy carbs. Although I did not drink alcohol for years starting before I was diagnosed, I do have a small red wine with dinner now, and a treat of pernod (my current favourite) which can only be purchased at a particular bar where I live. It is a treat because it is not that often and I have not bought a bottle or it would not then be a treat!!!

I hope my experience helps you in some way and leads you towards some relief.

I would love to hear how you go.

Thank you,Sheryl. Your replies always show a good understanding of the subject.My Hb is always in the normal range,the last test was 145 (130-180).My vitamin D and B12 are good as well. I haven't been avoiding dietary iron but,after reading a report from NCBI, I cut back on red meat while my TS was high,although I had been having it previously without feeling any different. I have never felt unable to stay awake,as some people have,just extreme tiredness and feeling awful. Perhaps I am luckier than some people on here. I seem to remember raising the hypothalamus with the doctor,among other things. I will give any updates I feel are relevant,especially if the fatigue begins to lessen. I will think of you the next time I have a glass of red wine!

Oops, I meant the last response to be a response to Ally. I know you have read all this stuff before.

The hypothalamus is tricky. You can compare your symptoms with what the hypothalamus is responsible for. Only the symptoms can be treated and only vx can reduce the amount of iron drawn up by the hypothalamus. The hypothalamus does not have a brain blood barrier and it 'tests' the blood (for whatever?) but iron particles accumulate and can drop down into the pituitary gland.