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normal levels

Posted , 8 users are following.

terrihigashi
terrihigashi

last time that I was on this discussion, I felt like I got blasted when I said that normal rate was between 1-180, others were suggesting it was much higher, that it was ok to be in the 200 range. I have gone through a couple of years to get to 28. My doctor says anything over 180 can damage your organs. I finally found my tests on line and this is from UCLA  (in California) in an attached picture.

1 like, 17 replies

17 Replies

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  • jmcg2014
    jmcg2014 terrihigashi

    Posted

    Some websites are simply wrong. As are drs. Your Dr is wrong, can't really say more than that I'm afraid.
  • BikerBlue
    BikerBlue terrihigashi

    Posted

    You're not wrong and your doctor's not wrong.

    In normal people, ferritin of 200 would be fine. But iron loaders (like us) need to keep ferritin down. Some say under 100 and some say under 50. That helps to prevent iron storage in organs which is the thing that can lead to most of the serious disease e.g. Liver cirrhosis.

    You're down to 28 so that's fab! TSAT is important too - needs to be below 45%

    Well done and stay well smile

    Sally

    • terrihigashi
      terrihigashi BikerBlue

      Posted

      This is what people we're arguing with me about. My Dr. Said anything over 180 causes damage to your organs, he even doesn't want me to be 180 as you have no where to go. 200 is not in the normal range. People on this forum. Were saying they never heard of this range and frankly we're kinda rude. That us why I decided to post thus. I wanted to know if the u.k. has different normal levels as the St a ndard than the u.s.?
    • jmcg2014
      jmcg2014 terrihigashi

      Posted

      Levels vary from lab to lab,but generally not by very much. A good way to be sure is just see a different Dr. I've never heard of 180 being anywhere near the limit,it seems far too low. Maybe your Dr knows something different, but even online information doesn't mark 180 as an upper limit.
  • Mrs._Z
    Mrs._Z terrihigashi

    Posted

    Below is what's listed on every ferritin test that I have had.  I don't know that anyone would have blasted you intentionally.  None of us nor the medical industry have any definitive information on this condition and that becomes very frustrating for all.  My niece, for example is at 11 and she's anemic.  It's my assumption that as long as you're under Dr.'s care, it's best to follow their instructions as long as they are running a CBC along with the ferratin levels. My Dr. wants me to be at 50 and as you can see by the number below, I still have a way to go.However, I've reached 113 in only three months having phlemotomies once weekly, so that's another indicator that we are all different. Have you been able to maintain the 28 level for a period of time if you're on the maintenance program?  I'm so anxious to get to that point!!!!     

    Component    Your Value      Standard Range

    FERRITIN       113 ng/mL      11 - 307 ng/mL

    Ferritin levels increase with age in adults.

    • terrihigashi
      terrihigashi Mrs._Z

      Posted

      Even in this picture, it shows over 150 being on the high side, this is not from my doctor. It was the way people spoke to me, as if I didn't know what I was talking about. The subject matter telling someone on this forum that is was o.k. to be 300, not if you have HH, that is what I was trying to convey.

      I have been under 50 for 3 months. I am getting venesections every 3 months now...so glad. It took me a year to get down, I started at 1675.

      I am finally not hot all the time, I feel cold and I am happy to be cold.

      My doctor also said that he wanted me at 50. I asked him when would he get concerned, he said under 12. I feel like I dont have to be as careful with my diet now. I have not eaten beef for a year, but last week I had a hamburger, I was so happy.

      I assume UCLA in California is the best medical research on the west coast, so I would think they would be more up to date on the standard range than some other facility. They are known for medical breakthroughs.

      One thing my doctor does let me do now, is give blood at the blood donor facility. The united states has made it legal for HH to donate blood since July 2015. Since this disease is genetic, it is not transferrable and rich in iron. So now I can do it for free and help others. After paying so much last year at the doctor, this is a relief.

    • Mrs._Z
      Mrs._Z terrihigashi

      Posted

      I'm anxiious to get to the 50 or below range -- I was curious how it worked once you get to that level and you've answered above.  I too have not had red meat (beef) since November, and my level is now at 80.  I go again today and am hoping to get to the maintenance level soon.Today will be my 13th phlebotomy and started at 969,  Looking forward to having beef too!!!!  Glad to hear you've reached your goal.  
    • deidre74971
      deidre74971 Mrs._Z

      Posted

      My husband ferratin level was 1700 and after 6 months of weekly treatment his level went down to 36 which was over 2 years ago and he's level is 27 at the moment it seems when they get you down to level they want you to be  it seem to stay stable he has had to have no treatment fo 2 years with only 3 monthly  blood test for checks.
    • Mrs._Z
      Mrs._Z deidre74971

      Posted

      Thanks for your post and it's very encouraging!  I started at just under 1000, and after less tha 4 months got to 41 after weekly phlebotomies.  Has your husband continued to watch his iron intake?   I have not had red meat for 4 months as well as watching my iron intake on everything.
  • sheryl37154
    sheryl37154 terrihigashi

    Posted

    It is my experience that my haemotologist considered it best to bring me down to my 'teens.  I accidently went to 8 with no obvious problems.  Then you are allowed to build up to what is comfortable to you.  My optimal level is 34.  That is when I feel best.

    I think we have to consider ourselves different to 'normal' people who can have a 'normal' range no problem.  Other factors come into play for us.

    It is interesting that Prof Pierre Brissot says that a TS% of over 75% is toxic - so eventually that may be where our problem lies once de-ironed.  I have no idea how to bring down a TS%.  It does not automatically happen to all of us when de-ironed.  Mine is often up near the 100% range and beyond.  No wonder I feel so toxic at times.  That is the word I have used before reading Prof Brissot.

     

  • michael1960
    michael1960 terrihigashi

    Posted

    According to many Dr's and Nurses i have to see,they reckon on a normal level of about 50-150 for those that Dont have Haemochromatosis. Those that do have it, its advised to keep down below 50.

    As its being said below, these can depend on the age and sex of the person.  I've been having Venesections  every 3 months,since Feb 2000.  Most times they get me down to 50 and below sometimes.

    UK male here.

  • haircrazydaisy
    haircrazydaisy terrihigashi

    Posted

    People on the site are usually very supportive and are also aware that HH is very complex.  Little is actually known about it by doctors, let alone non-medically trained people so it shocks me to read the replies from one of the people on this forum.  My brother is in the USA and I'm in the UK - I know from our results that the measurements are completely different - a little bit like measuring distance in miles and kilometres and expecting them to be the same.

    I was venesected to get my ferritin level down from over 100 to below 50, so our doctors are clearly singing from the same song sheet.  My brother, on the other hand, has to get down from the thousands.

    There are always bombastic people out there who think they know more than anyone else but you'll find that most people on this forum are very helpful and open.  Don't be disheartened. 

    • sheryl37154
      sheryl37154 haircrazydaisy

      Posted

      Sorry, but I have not noticed anyone being bombastic.  People are responding according to their experience.  As we know, what is good for some is not good for others.  It is difficult to find our best levels when drs do not know much.  We have to self educate, self evaluate, and take control.

       

    • jmcg2014
      jmcg2014 haircrazydaisy

      Posted

      A question was ask,a lot of answers were given,its up to the OP to choose which they want to heed. I think though to ask for advice you must be prepared for a range of answers,and not get precious if the majority suggest your information either is wrong or simply not the same as their own information.
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