Why is the maintenance level so low for HH patients?

Ah, ok, yes I do understand that strategy, but it seems a bit weird that you could have around 400 in sweden and that would be considered normal. 

Good luck and thanks for answering

Thank you very much for your answer Sheryl.

I just got in to this "HHworld" and it all feels a bit scary, however, I just now found out that my first blood test, 4 days prior to the one mentioned above was Ferritin 516 and saturation 81%! Isnt that extremely weird?! So, maybe it has something to do with HH anyway? I´m getting a bit panic actually.

Hi Maritana, now that sounds more likely!  Blood test results can jump around a bit.  Knowing that you have HH is much better than not knowing, and it is treatable, so there is no need to be afraid.  It is much better than having to have chemo or worse.

Educate yourself about HH and the treatment so that you know that you are getting appropriate treatment.  I was referred to a Haemotologist to treat my HH and from this experience and others who were not, I think a Haemotologist is the way to go.

However, apart from the Celts who moved through Europe and eventually settled in Ireland (1 in 80 has HH), Scotland, Wales, leaving their dna scattered all through Europe, the people from Nordic countries were also supposedly the originators of the HH gene.  So one  would think that there would be a high degree of knowledge about HH in your part of the world and you would be bumping into a lot of people with HH.  Given that, one would think you would be in safe hands.

Please keep us informed about your treatment and how knowledgeable your drs are about HH.  While >300 is considered getting into overload for males in this part of the world, perhaps it is not in Nordic countries.  Perhaps your HH organisation can tell you what is considered normal in case your dr has got it wrong.

Also ask them about support groups in your area so you can discuss it with them as well, and find out what their experiences are.

I have heard of some research in Canada wherein the results found that 600 would be ok.  Definitely not ok for me, my optimal level is 34.

You may have to be assertive, or find another dr.  Tell him you want to be treated anyway, because you have had symptoms long term, and do not want to continue to have these unnecessarily.

The other option is to donate blood at a Blood Bank as often as they will allow.

 Let us know how you go.

Thanks again for kind answer Sheryl. 

Unfortunately there are no support groups in Sweden, I googled for hours and eventually ended up here. Yes, I will defineatly be assertive with the hepatologist (have my first meeting on wednesday). I seem to have a depression aswell and its probably adding up on my anxiety and stress for the HH-issue, making me even more tired. I read somewhere that you could get depressed by HH but I guess thats perhaps more likely to happen in a more progressed form of HH? Just very tired and confused.

I will post again and let you know how it goes!

While doctors have been saying otherwise, on this message board we've found that things like anxiety seem to be common when it comes to people with HH (at least with the posters on this board).

I've suffered from anxiety my whole life but it didn't get really bad until around the same time that I was diagnosed with HH (my ferritin levels at the time were 600+). I think that some of my anxiety had to do with the fact that I was feeling so off for such a long time and I had no idea why, but I also definitely think there is a correlation between HH and anxiety. At the same time, I would also say that there's a correlation between HH and depression as well because depression and anxiety are two heads of the same coin (especially considering doctors often prescribe the same medication or similar psychological treatment for both).

 

Very interesting, though very hard to clinically prove this correlation I guess? In Sweden there seem to be a very limited set of symptoms of HH described as fatique, atris and cirrhos. Thats pretty much it. And everything is easily cured by phlebetomi. But something tells me thats not whole picture...

Thanks Sheryl!

Does anyone know in which way the ferritin levels correlate to certain specific symptoms? I´ve seen some info about having over 1000 ferritin could create irreversible damage to organs. Also, I´ve understood that the way you you will be affected by HH is highly individual, but still, should be some knowledge about the ferritinlevel/illness relation?

I would love someone to come in with better info - but no, in all my research I have not come across anything regarding symptoms and ferritin levels apart from >1000 is recommended to be referred to a gastroenterologist.  But some may need to see a gastroenterologist with less - as you say, highly individual.  If someone is drinking too much alcohol and has HH, that could speed up the need to see a gastroenterologist.

I am not a medical person, but it is my experience from talking to others, I have noticed that those who have had glandular fever at sometime in their lives, usually as teenagers or young adults, that they seem to have more noticeable symptoms than others.  Possibly because glandular fever, Eppstein-Barr Syndrome, can affect similar organs that HH does, so perhaps a pathway is already established.  I have not seen any research on my observations, but maybe someone will pick up on it one day.

I had hoped that better knowledge would come out of Nordic countries - but it seems a bit like Ireland, one in 80 has HH, but no one is bothering about it that much, although those with HH are seeking help.  Scotland seems to be in denial altogether.

I have Danish and Scottish heritage.  I have wondered who orginated the different faulty genes, ie C282Y and H63D.  Did the Celts originate one type and the Nordic people the other?  But I have not come across a pattern.

Depression is listed as one of the early symptoms by the way.  The best advice I got was from a specialist cardiolist (my HH appears to have affected my heart).  He said there is nothing anyone can do if there are iron deposits in my heart.  They can't cut it out, they can't drain it out - just to keep up my venesections - that is the only treatment.

The liver can come good if damaged, with venesections, but some damage cannot be reversed, but with treatment, they should not get worse - I am told.  Hopefully, you have been diagnosed early enough to not have long term problems.

Do you know of anyone else with HH?  What about your relatives?  Are they  being tested?  Are they encouraged to be tested by your dr?