1. Community
  2. Blood & Immune System
  3. Haemochromatosis

Constant flu symptoms

Posted , 5 users are following.

karen2006
karen2006

Hi,

I Was diagnosed with hemochromatosis 2 years ago.

I Would love to know if anyone else suffer with really bad joint pains and flu symptoms? I'm really fed up now and wish I could have a day without any pain and feel normal again.

I have had venesections and have my ferritin checked every 3 months and doctors ignore me and I try and explain how I am feeling.

 

2 likes, 14 replies

14 Replies

  • haircrazydaisy
    haircrazydaisy karen2006

    Posted

    Hi Karen,

    I think that joint pains are very common with this disorder, from what I have read and also seen on this forum.  I have dreadful pain and "clunking" in the vertebrae at the top of my neck - that is pretty constant and by the end of the day, I feel my head is just too heavy to carry around.  I was told that venesections wouldn't help that & the consultant didn't seem to think it was caused by HH - he thought only the pains in finger joints were relevant to the condition but I'm not confident that he was right.

    As for the flu symptoms, I used to have that just before a period - my consultant agreed that it was because of the build up of iron.  I thought that it was "hormones" for years as I always felt better once my period kicked in.  Now that I'm having regular venesections, joint pain other than that in my neck is definitely improving and I don't feel as "fluey".

    What gene mutation do you have, Karen?  It would be interesting to compare notes on symptoms and mutations to see if there's a link.  Someone has probably already done that on this site - there are so many posts to trawl through so I apologise if I've missed that one.

    There are many people on this forum that know far more than I do and have been dealing with the disorder for years - I'm sure they'll be able to give you some great advice.

    Good luck :-)

     

  • chorleyboy
    chorleyboy karen2006

    Posted

    Hi Karen, haemochromatosis if left unchecked causes so many problems, joint problems being one of them.     I had never heard of haemochromatosis until diagnosis and being tod that this disease has lay dormant for manyyears and only now it appears to have caused joint problems particularly in the knuckles of hands but also other arthritic joint pain too, diabetes mellitus, and because iron stores itself in organs of the body, a tumour was found on my liver.    I have fortnightly venesections  to reduce the ferritin level but this goes up and down, as high as 7001 and low 4265      What is your ferritin level?     And, apart from joint pain and flu like symptoms, has it caused any other ailments to surface?     Blood donations seem to be the only treatment available and of course early diagnosis of this disease.     Glyn
    • sheryl37154
      sheryl37154 chorleyboy

      Posted

      Glyn, it sounds like you are the victim of another very late diagnosis.  Your ferritin levels are no doubt fluctuating because of the inflammation in your body.  Even a cold can cause an increase in ferritin.

      Haemochromatosis organisations are trying to get the govts to screen everyone for HH before it gets to the damaging stage.  You would think screening would be cheaper than the ongoing treatment of organ damage.

      What is your TS% generally?

       

  • patrick00275
    patrick00275 karen2006

    Posted

    Hi, The joint pain is because the iron is in the soft tissue and won't get better with venesections.The pain in your hands is arturitis in the first 2 fingers in each hand, It is not going to go away.Sorry to tell you this 
    • haircrazydaisy
      haircrazydaisy patrick00275

      Posted

      Hi Patrick - so is that the same for hair loss - is it that the soft tissue in hair follicle is full of iron?  I've heard that hair doesn't grow back either.
    • sheryl37154
      sheryl37154 haircrazydaisy

      Posted

      hcdaisy, I have had success shampooing my hair with Nizoral 2%.  I prewash with something gentle, then apply the Nizoral leaving in for 5 mins.  Rinse.  I usually give it a splash of cold water to excite the blood supply to the scalp.  No conditioner allowed except for after treatment to the hair, not on the scalp.

      I still lose a lot of hair but I am getting a lot of regrowth too.  Sometimes I go through (short) stages of little hair loss.  If you have head sweats, sweat is acidic and makes the hair break at the roots.

      I think the cause is the effect of HH on our hormones causing the hair loss.  I have used the Nizoral 2% for years now and probably will have to always use it unless something better comes along.  Regain or whatever is too expensive.

       

    • patrick00275
      patrick00275 haircrazydaisy

      Posted

      Hi Daisy. I can say for sure about the hair loss,But Iron will deposit any were it can it's not just in your blood.it can even get in your brain I will try and find out about the hair loss for you.question
    • patrick00275
      patrick00275 haircrazydaisy

      Posted

      Hi again,It seems hair loss is more likely in iron deficiency,the jury is still out on overload and hair loss.

       

  • sheryl37154
    sheryl37154 karen2006

    Posted

    "I have had venesections and have my ferritin checked every 3 months and doctors ignore me and I try and explain how I am feeling."

    Are you saying you no longer have venesections?  What is your current ferritin iron and TS% levels?  What are HFE genes that you have?  We generally need specific information to get an idea of your state, because everyone is so different.

    I have found that you have to ask a dr a specific question to get an answer otherwise they are just letting you vent your feelings.  Besides they are probably praying that you don't ask, because they don't know!

    You may need x-rays to see what is actually happening to your hips, knees, etc. - be specific about the site of your worst pain.  You may have to line up for replacements further down the track.  Before diagnosis of HH, and after 9 years of classic crippling symptoms, one of my hips broke up from osteo necrosis of the hip from my blood being so thick with iron it could not get into the finer capilliaries to feed the bone.  Both hips needed to be replaced.  So ask for x-rays.  When you get results you may need to go on good pain killers - as if any are good - but necessary in order to function.

    I generally have an antihistamine a day for the flu symptoms, but otherwise I am feeling so bad by early dinner time I just have to go lie down.  Wierdly, within about 5-10 mins my flu symptoms dissipate.  I guess my body is telling me, I am too tired to stay upright.

    This year I have found a100mg aspirin each morning is very helpful but still crash and burn directly after early dinner.

    BTW, I have been "deironed" for more than 13 years, but still have to have venesections every three months to keep it down.  My haematologist has no answers either, just keeps telling me that as I am deironed, I should have no more problems!!!!

    They just don't know enough yet and they can't get enough money to research it.  Support your country's HH assoc to help create awareness and hopefully get the drs educated.

    Researchers believe that another gene is involved that makes it more worse for some people than others.

     

  • karen2006
    karen2006

    Posted

    my sister who is a carrier apparently has a gene which they can't identify.

    My body is so sore sometimes that I wimper in my sleep and my husband wakes me to make sure I'm ok.  But when I go to the doctors to try and explain how I'm feeling they look at me with a blank expression.  

    I keep a smile on my face when in work, but some of my work colleagues know instantly that I'm not feeling great just by the paleness and the strain on my face.  Work are really understanding.

    • sheryl37154
      sheryl37154 karen2006

      Posted

      I guess what I am trying to say is specifically ask drs what is causing your issues and what can you do about it?

       

    • karen2006
      karen2006 sheryl37154

      Posted

      Hi, I've made an appointment to one of the few Dr's that listens to my problems so hopefully something can be done. My job is very demanding and have had 2 crazy days of it. My day off work yesterday and was in pain and worn out, I need to either cut my hrs or find a more relaxed job which isn't easy to find. I get my bloods checked in Jan

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.