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

stiff hands

Posted , 7 users are following.

Poppet01
Poppet01

Hi,

I have known that I have haemochromatosis for 3 years.

Here are my details:

c282y hfe heterozygous

h63d hfe heterozygous

I have also had another condition which is very strange. During the night I get a stiffness in my hands that often keeps me awake. This stiffness also occurs if I lean on my arms for a short time. There is absolutely no pain associated with this stiffness and it is mainly in the index finger, ring finger and little finger of each hand. When I wake up I can feel a 'coursing' of my blood through my arms to my hands and the stiffness goes away until I sleep again. I have had this effect for 7 years. I am 54. Remember my hands are not generally stiff during the day. This stiffness is definitely not the pins and needles effect. I am having an MRI on my hands in a couple of weeks.

It has taken me too long to relate the stiffness to the HH. I am now investigating the link but when I visited a Rheumatologist he didn't think the link was significant. I am now 99% sure it is related to HH because I met someone yesterday who has *exactly* the same symptoms and she just discovered that she was HH.

my serum ferritin level is 449 ug/L

I have never had a venesection to take blood from my body because the doctors all say 449 is ok.

I can't give blood because I lived in the UK during a certain period.

My questions are:

What could this strange stiffness be?

Could a venesection alleviate the stiffness during the night?

(yes. i am now organising a venesection)

Hope you can help.

David.

1 like, 13 replies

13 Replies

  • Mrs._Z
    Mrs._Z Poppet01

    Posted

    You may have carpal tunnel that can cause the stiffness.  Many have said it is associated with Hemochromatosis.  I personally have had the surgery to repair the carpal tunnel prior to knowing I had HH.

    Regarding your ferritin levels, how often are you checked?  We that have this condition are told we need to get our levels to 50.  By not having the venesections may cause other complications so would recommend that it be checked out.

    All the best to you.

  • philx
    philx Poppet01

    Posted

    hi 

    is it your own gp telling you your level of 449 is ok i would be asking for a second opinion i too have hh cys282tyr.

    my level when first diagnosed was 1130 now after 7 venesections i am down to 661.

    but my hemotologist said it has to drop tp at least 50.since starting v/sections i have started to get stiff joints every morning,eases off through the day.

    please contact the hemochromotosis society for advice

    good luck keep us updated

    cheers philx

    • Poppet01
      Poppet01 philx

      Posted

      Are you suggesting that the venesections are causing the stiffness?

      Do you know why?

      I thought they would have a positive effect.

      d.

  • chorleyboy
    chorleyboy Poppet01

    Posted

    I agree with others, 449 is too high and  venesections are the way forward to try and reduce your ferritin level.    I would also say that the problem with stiffness in your hands could be carpal tunnel which I have, and I think it is linked to HH   I contacted the Haemochromatosis Society who I have to say are very helpful and they pointed out the importance of having venesections as the only treatment to reduce your ferritin level.    You dont say what your TS percentage is, transferin saturation percentage.  Mine is way to high at 92 and should be somewhere in the region of between 20 and 50 tops.    Persevere with the venesections and ask your doctor about carpal tunnel, best wishes Glyn
    • Poppet01
      Poppet01 chorleyboy

      Posted

      Thanks everyone for your help.

      Please could you let me know what readings are required for the rheumatologist to make an informed decision about venesections?

      I think the list is:

      ferritin (serum)

      iron

      transferin saturation (%)

      are there any others?

      thanks.

      david.

    • philx
      philx Poppet01

      Posted

      Hi David

      Your own doctor should refer you to a hemotologist for anything

      To do with your blood,when he refers you he should send a copy of

      Your blood results so hemotologist can study ,and on that offer you an

      Appointment, where they will do further blood test,and offer you treatment.

      They can advise you on your other health issues that may be caused

      By hemochromatosis????

      Cheers Philx keep us updated on your progress

  • Poppet01
    Poppet01

    Posted

    do i see a rheumatologist or hemotologist?
  • paminutah
    paminutah Poppet01

    Posted

    Interesting.  I started treatment at 579 and I have the same form as you.  My biggest symptom was arthritic like pain in my hands and elbows. I recall having a lot of headaches early on too.   I've been in treatment every 3 weeks for about eight months.  My pain went away, but just started coming back as my levels have stalled out and aren't going down.  I am stuck at about 280.  They have switched me to every two weeks, so we will see how that goes.  

  • Poppet01
    Poppet01

    Posted

    I am now confused. The acceptable range for Ferritin is given as 20-300 ug/L.

    Yesterday when I visited my gp she said my level was acceptable (321). When I said some people on this forum are trying to get down to 50 she said that that was exteremly low and it was unnecessary to get down to those levels.

    After much badgering she gave me a referral for a public haemotolgy doctor but now I'm thinking that I should have gone private.

    Anyway, back to my point if the acceptal clinical range is 20 to 300 why are people trying to get below 100?

    Thanks.

    d.

    • Mrs._Z
      Mrs._Z Poppet01

      Posted

      The acceptable range for those with haemochromatosis is different than those without the condition.  If you have been diagnosed with HH, your values need to be 50 or below.  You may need to get the advice of hemotologist that can explain and is more knowledgeable about HH.

       

    • philx
      philx Poppet01

      Posted

      Hi

      Email the hemochromatosis society with your blood levels and

      Symptoms, tell them what your doctor is tell you is acceptable levels

      For you,as if in there opinion your levels should be.

      When they respond print off what they say your levels should be.

      Take a copy for your doctor to look at,I have no idea what your doctor s

      Knowledge is of hemochromatosis, but if you read a lot of postings

      This is what we are coming up against with health care professionals

      Lack of knowledge of or conditions

      Cheers Phil x

  • DawnFlare
    DawnFlare Poppet01

    Posted

    Long thread, long answers, and i haven't read all of them.... but....

    ?I had same thing at night -- in my feet and hands -- to the point where it kept me awake. In my case it turned out to be a B12 deficiency. I just take one B12 Methyl a day and  it ended. In my case the B12 is caused by the MTHFR heterozygous. marker in my genome. Since B12 is water soluable, it might be worth a try.

    ?Continue to take good care of yourself. Be well!

    L.

    • Poppet01
      Poppet01 DawnFlare

      Posted

      Thanks for that information. I'll try it.

      When I did a google search on b12 deficiency it referred to other bodily functions rather than the joints but if you say it works I can only try it.

      d.

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.