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Has anyone else got other liver diseases?

Posted , 6 users are following.

stevetrov
stevetrov

I have been diagnosed with alpha1 anti-trypsin deficiency and non alcholic fatty liver disease as well as haemochromatosis. 

My ferratin levels are currently under control, my liver function tests are "nearly normal" and I dont have any cirrhosis.

However, I am suffering from crippling fatigue, I can only walk very short distances and use 2 walking sticks. I am able to work part time, but only because I have a desk job, a scooter and an understanding boss. I get hungry all the time, and feel worse if i miss a meal or even a snack. 

I was wondering whether other people have other liver diseases as well and whether it has made your sympotms worse.

1 like, 6 replies

6 Replies

  • sheryl37154
    sheryl37154 stevetrov

    Posted

    Hi steve, haemo stinks, doesn't it?  I am told I don't have liver problems but I have a lot of other things due to 9 year delayed diagnosis.

    It is now known that sugar and starches are the culprits for fatty liver disease, because we don't run marathons to use up that 'energy' and it becomes fat.  I, too, suffer crippling fatigue, even though I have been told that as I have long been 'deironed', I should not have any more problems.  What a crock!

    I had to give up my job because of it and the body pain, and having both hips replaced because the bones died and broke up from having blood so thick with iron it could not get into the fine capilliaries to feed the bone.  That is how the cells of my body feel.

    We are prone to diabetes, so I don't know if you have regular tests for that.  Always have a normal protein serve with each meal including breakfast, and as snacks.  Protein is also supposed to reduce your hunger, whereas starchy carbohydrates make you want more.

    We just come back from more than a month in France and daily partissiaries and too much bread, which is so against my no sugar and starches regime that I have followed for years now.  I think I should have a glucose test - I am even more fatigued and want to eat more, craving cake, or SOMETHING!  Nuts, cheese not working for me.  Sugar is so addictive - I want more.

    Are you homozygous C282Y?  What are your TS% levels like?  Are they generally >75%?  Prof Pierre Brissot writes that TS% levels >75% are toxic.  Mine are often at or near the 100%.

     

    • Mrs._Z
      Mrs._Z sheryl37154

      Posted

      Wow this is very interesting.  I have been deironed since February and am due to be rechecked tomorrow and visit with the Dr. on Thurs. I never had the hunger issue prior to being deironed and was going to speak with the Dr. about this.  I am glad that you mentioned it as I thought I was the only one experiencing wanting to eat all the time. Of course these Dr.'s want you to lose weight and do they understand that this hunger issue may not be anything we can control.  This is one area I havve never read about regarding the condition.
    • sheryl37154
      sheryl37154 Mrs._Z

      Posted

      Yes, it is good when someone brings up something that has not been mentioned before and you have the same problem.  I did not have hunger issues while I was being (fairly) strict about no sugar, no starches.  But, as I said since many French partissiaries, it has come back.  Your body does get used to having certain things as certain times of the day.  So, I just have to get over it and work on the protein factor more.

      There was another issue that someone brought up in this forum.  She gets so tired, feeling like slipping into a coma when she eats.  I have that problem.  Not so much comarish but suddenly have the desire to just lie down or sprawl across the table before I am finished.  I feel too weak to sit up.  I wondered if my blood was leaving my brain and the rest of the body to go to my stomach to digest.

      I did not have time to respond to the post and now I cannot find it.

       

    • laura_19229
      laura_19229 sheryl37154

      Posted

      Hi sheryl. I think you were talking about my post. Would be interested on your oppinion have only posted once so you should find it in my profile.
  • chorleyboy
    chorleyboy stevetrov

    Posted

    Hi Steve, I am glad your ferritin levels are under control and the fatigue is debilitating but something we all have to deal with and it is interesting you mention the 'always hungry' because I feel the same.   Always wanting to eat.    My haemocromatosis caused a tumour on my liver.  At first the doctor asked if I was an alcoholic but that's not the case and from then on, it was discovered I had Haemocromatosis and diabetes, arthritis, and of course a tumour caused by the iron overload which settled itself in my liver.   I had a liver ablation procedure and will be having a check up next month to find out if it has gone completely.    But, the iron level is still too high and despite regular blood donations, it is up and down all the time and I don't understand why it doesn't go down to an acceptable level.   I hope you feel better soon  and not so tired, Glyn
  • janet05622
    janet05622 stevetrov

    Posted

    Hi Steve.  I was diagnosed with Hepatitis C which I have had unknowingly for about 45 years.  Blood tests revealed that something was wrong so my GP did a Hep C test last Nov.  My ferritin levels were 640 when I first saw the consultant and after a couple of months had 5 venesections which brought it down to215.  I started the hep c treatment and have now got another 3 weeks to go.  The course is 12 weeks.  Last test was good and showed no Hep c virus anymore.  A very good treatment that's only been around for a fe years.  A fibroscan showed i had severe fibrosis but not cirrhotic fortunately.  A blood test 7 weeks ago revealed my ferritin had gone up to 522, but last week it was down a bit to 246.  I will be having a venesection on Aug 4th.  It's a long journey but hopefully we get there in the end  It's complicated being on the Hep C treatment because the side effects are similar to that of iron overload.

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