Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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GageL 09/14/2009

I have asked the forum this question before, but had no responses. Try try again!
I have been diagnosed about one year ago with Gilberts Syndrome, or Hyperbillirubinea, a lack of the enzyme that conjugates billirubin from the liver in the small intestines. This is also a inherited disorder and diagnosed with the HH diagnosis almost simulateneously, I cannot help but wonder if these two conditons are related and if so, does anyone else on this forum have both diseases are have been at least tested for Gilberts Syndrome?
There is zero information on this from the internet after about 10 hours of searching and my doctor and my hematologist were clueless about any connection and had not seen any studies about this co-incidence.
If anyone else on this forum has both of these disorders simultaneously, please share with me your information or experience. The main reason that I am inquiring is that it is quite difficult to distinguish symptoms between the two liver disorders other than daily blood level tests for iron
AND billirubin! which of course is not going to happen.
Thanks in advance for any imput.
GageL

deleted_user 09/16/2009

I will be seeing a hemotologist thursday, I will ask about this.

GageL 09/16/2009

Thank you for that very generous reply solidiron. I have also since my post, had phone sessions with 2 more Hematologists in Calif, and neither one knew anything about the connection and there is apparently no research on this. Any more imput would be most helpful and appreciated. I would still wish to know if anyone else on this forum has a diagnosis for both HH and GS.
GageL

deleted_user 09/24/2009

Interestingly, I have HH and my sister has Gilberts. We don't know if she has HH, she was never genetically tested but she does not have iron overload. We both have Pyruvate Kinase Deficiency which can also cause elevated bilirubin.

GageL 09/25/2009

Interesting. Have never heard of PKD, will check it out right now. Many thanks for the reply.
GageL

deleted_user 10/01/2009

sorry I took so long, my doctor did not seem to think there was a connection.

GageL 10/01/2009

Thanks solidiron. That seems to be the consensus altho I have my doubts. I think when the bilirubin numbers are out of range, and that comes with both diseases, there would be at least some degree of commonality. I rack this up again to the lack of research on HH in the US, which according the WHO this week, ranked 37th in the world for health care. No surprise!
GageL

deleted_user 01/01/2011

I have both GS & HH and I'm wondering about the connection myself! Regards
Richie

Strype 08/01/2014

Wait wait wait... I know this is an old thread but I was diagnosed with HH in 2008 and this year I was diagnosed with Gilbert's Syndrome.

I think there are enough candidates here to warrant further study.

Strype 08/01/2014

Rough estimates here. The last time I read up on percentages of people with HH (correct me if I'm wrong) it was 8% have one gene and about 0.5% of people have 2 copies of the genes that cause HH. Gilbert's affects roughly 3-7% of the population, so we'll say 5%.

So if you take .5% of the population in the US (314 million) you get 1.5 million people with both copies of the gene. Ten percent of those will actually develop HH (recent study I'll have to find it) which brings us to 150,000 people with HH. So if you throw Gilbert's in on top of that, you would reasonably expect 5% of those individuals to also have Gilbert's or 7,500 people with both disorders.

So maybe it isn't rare enough to make a link. I dunno. If there are 3 of us with both we only represent 0.04% of those who would be expected to have both. Boooooooooooo!

Babushnik 11/10/2016

I was diagnosed with Gilbert's in 1994, and am now waiting for hemochromatosis testing after labs revealed excessive iron. I have joint and abdominal symptoms. I hope this thread gets updated responses from members! Thanks in advance for any information.

Lake 11/15/2017

My Uncle was recently diagnosed with haemochromotosis and now me with Gilbert’s. I wondered if there was a link. My symptoms- IBS . But does anyone else get itchy?

Brinski 12/27/2017

I have HH, I don't have Gilberts Syndrome. My son does have Gilberts Syndrome, but does not have HH. He has been tested for HH. He was diagnosed with Gilberts when he was 17/18 at the same time as Glandular Fever. The Gilberts has not played a major player in his health. He sometimes takes Milk Thistle tablets which are suppose to help with Liver. He notices that if he drinks to much alcohol he can get yellowish eyes and feels fatigued as his red blood cells increase. He watches what he eats and tries to reduce fatty foods. I would say that the Gilberts is not really causing him any issues. He had Glandular fever for 18 months. He is now 33.

joshy64 01/14/2018

Hi , my husband has both Gilbert’s and Haemachromotosis , he has lots of issues that affect him , I know it’s some time since you posted this but I have only just found this site .

Jenje 10/26/2018

My maternal grandfather passed from Hemochromatosis and I've had several doctors tell me they believe I have Gilbert's Syndrome due to my elevated bilirubin. I have tested negative for Hemochromatosis but after reading the comments above I'm really questioning the link between the two. Is Gilbert's possible early on set of HH?

I have had severe right rip pain for years and some random sharp right side abdominal pain, random itchy skin, noisy stomach, along some other not so pleasant symptoms that come and go.

with all that being said, I find it interesting there is such a lack of information and list of all the symptoms for Gilbert's and the possible like to HH.

Anyone know of a Gilbert's website or doctor that specialize in it?

sleepyowl 11/04/2018

I was wondering about this too as also, my brother has gilberts but negative for HH and I have HH. I never thought to get tested for gilberts, but haven't had any jaundice probs and would have thought it would have shown up in the many bloods test i've had done in the past. Anyway, definitely sounding like there's a link.

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