Nicola I can tell you that with a ferritin level of 600 it is most likely the reason you feel aweful, My doctor says everyone feels it at different levels I start to feel it after I hit 100. when I hit 285 I was so ill that I didn't want to get out of bed I was sleeping 13 hours or more a day, my stomach was always upset and my body ached. When I got down to 50 my energy level came back I sleep 7-8 hours a night with no naps during the day, my body doesn't ache so much anymore. I can tell when I start to creep back up to 100 because all those other feelings of "not being well" start to slowly come back.

I think that doctors do unnecessary tests, if your liver enzymes came back normal then they should of sent you for an utlra sound to confirm that is what they did with me. a liver biopsy seems a bit evasive and unnecessary

why are they stopping your phelbs? seriously I would consider finding another doctor. I don't know what your ferritin levels were when you found out but if they were not over 1000 then I highly doubt you have any liver damage and if they think it is something else surley there is other tests besides biopsy to be done. maybe it is time for a second opinion. thats just my 2 cents. LOL .

Meechie when you had a ferritin level of 285, was that your highest level, and what was your % saturation?

After any of your phlebs have you had increases in ferritin before it came back down?

Thanks christopher:-)

Hi Christopher,
no 285 was my highest I have ever been, my sat was 75% I am a slow loader and my HH was caught early so I was lucky.

when I hit 158 I shot back up to 170 after a phelb it took me 6 more to get down to 50 after that.

my ferritin is currently 57 with a saturation of 40% . When I finished all my phelbs I was at 47 I dropped down to 35 by myself and now I am up to 57 it could take me awhile to start increasing again just because of my gene type I am a very slow loader .

Nicola, I understand totally what you are saying! I had the exact same issue, the gastronolgist assistant told me that I could not start the phlebs without the biopsy first. That alarmed me, like I was being held hostage to the biopsy. So, I went to an internsit who had previously told me that the first thing a gastronoligist would want is a liver biopsy! He was right!!! I am now being treated by the internist and did not do the biopsy! In fact, I did some research that said if any dr tells you that you need a liver biopsy to confirm HH, find another dr. I even asked if we could start the phlebs and the gastronligist assistant told me no, she wanted to be sure. Well, after I changed Dr's and asked for all my lab work, the lab work stated very clearly HH!!!! They did the DNA test that was very clear on the subject, I understood it totally, it was in plain simple language! It even said for me to ask all at risk family members to be tested! So, now my trust issue with the gastronoligist office is 0!

Hi Dka,
Thanks for your reply. I had the genetic test done last year and do have HH. I am C282y/C282y. Have had 5 or 6 Phlebs which made me anaemic. Ferratin level is now around 700 from 1647. Heptologist said I should have started to feel better now levels are coming down but I really dont. He said he needs to check how much iron is stored in the liver. In the meantime all blood letting has ceased. I wouldnt mind so much having the biopsy if they would carry on with the phlebs and at least get me down to around 50.X

Thanks for your reply Meechie.I did have an ultra sound too and had a letter back saying no signs of chronic liver disease. I do get nagging pain under right rib and would like to get to the bottom of it.Im not afraid of having it done just the result. Mind you I think HH makes me a bit paranoid. Hope you are well. Nic. X

they have an MRI that can do the same thing as a liver biopsy its called a ferriscan, I can assure you that at a ferritin level of 700 your not gonna feel well..

If my hematologist seen me at 700 he would gasp and send me for weekly phelbs until I hit 50 .. when I was at 170 he said thats not good you need more so he sent me for 2 more I was at 105 with an iron level of 44 and saturation at 75% he said no no thats bad you need 2 more phelbs right away because with that iron level and sat level your gonna be back up to over 200 very fast and he was right that dropped me down to 47 ferritin after 2 more phelbs..

I hate to say this but your doctor sounds like he doesn't know what he is talking about and that would scare me into getting another and I would go to a hematologist who specializes in this more than a hepotologist.

Thanks Meechie, was due for a cat scan but they cancelled that one. When I asked about a ferris scan a few months ago they said they didnt have one in Cornwall.Just so fed up with feeling so C**p all the time.X

Yeah I know the feeling Nicola I was like that at one point too.. I had this one specialist that was just so miserable she made me feel the same way..LOL my ferritin level was at 119 (which is low for most) I felt awful I know it shouldn't even make me feel much different, but for some reason when I hit over 100 I just felt ill she kept telling me I won't do a phelb until you hit 120 geez 1 freaking point.. so I said forget this im finding a new doctor. well that took awhile since its so hard to get an appt before 6 months these days.

Then I found my doctor I have now, man I love this guy he is awesome best doctor in the world. I told him everything gave him all my papers and said look I know my ferritin is only 158 but Im telling you I feel awful and the only way im going to know if its the HH is if you bleed me down to 50. he agreed to it, I tell you the lower I got the better I started to feel. I told him so and he said well everyone feels it at different levels you must just be more sensitive. He understands and he keeps me at 50 or below.

I would seriously consider atleast finding another doctor for a 2nd opinion do some searching even go to your hospital and ask who there hematologist is and google him if you think he might be good get a refferal from your family doctor or whatever it is you do to see a new doctor.

This is your health don't settle if you don't feel good about it. Look around there are good doctors out there just do some searching.. i found my doctor by accident I was doing physio and I just happened to ask if they had a hematologist that worked out of the hospital and he told me yes.. I got a referal for him and I haven't looked back.
we are our own advocates for our health, never never settle if it makes you feel uneasy its for a reason.

Nic...... hang in there, you will feel better. If you asked about the ferriscan & they said they "didnt have one in Cornwall" then maybe "they" need education, too. The ferriscan is done with MRI machine. Here is a list of locations worldwide who do them (not sure how often they update their list). Just scroll down the web page and then the long list begins. I also hope you AT LEAST get a second opinion and then you might get those phlebs started again, toss the idea of the liver biopsy and feel better soon.

http://www.thalassemiapatientsandfriends.com/index.php?PHPSESSID=47f6648bc64b42d4b5a533c5a096dce7&topic=259.0

zzzzzzzzz

Wow! I have not read all the comments, but the strange thing is that before HH is ever discovered, it brings out all kinds of things. I have found that the doctors do not fully understand that. I was first diagnosed with Porphyria Cutane Tarda, which acts like HH. I have that as well as HH. Luckily for me, the treatments are the same only more radical. Phlebotomies every single week until you are under 100 at least. The difference is the added test of uroporphyrigens. See my blog and go to the archives of January to see if any symptoms sound the same:
http://theburnedhand.wordpress.com/

Thanks zzz.. Am really trying to stay positive, just finding it really hard at the moment. This on top of emphysema is relly knocking me for six at the moment. X

Nicola
Looks like you'll have to have a day out in London.

I was told by my doc that nowadays they only do a biopsy where there is certain damage to the liver of a mid to high level. With lower levels of damage they often miss the damaged area anyhow so it is not 100% accurate, and it is invasive also. Here they will only do a biopsy if damage is shown on a scan.

It seems an MRI test that calculates T2 & R2 can also quantify liver iron (though may still be in trial stage). Maybe they have somewhere in Cornwall or Dorset that can do this.
Ref
http://www.irontoxicity.net/diagnosis-of-iron-toxicity/imaging-studies/magnetic-resonance-imaging.jsp
and
http://www.radio.univ-rennes1.fr/Sources/EN/Hemo.html

There are more MRI centers doing the Ferriscan now in the UK than listed on that other board but they are all in London, bar 1 which is in Brum.

see
http://www.resonancehealth.com/rh_findcentre_results.jspQQLocationIdZZEURGBR

Thank you Feral, I am still scheduled in for next monday to have the biopsy but am still not sure if I want to put myself through it. Trouble is I just want phlebs to start again and if I start changing things I might have to wait even longer. X

Well getting the iron down is the main thing! Hope you get to lower your ferritin and feel better soon. If the wheatgrass experiment some of us are doing works it could be ideal for you, but we won't know before your appointment ......