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.
My identical twin brother was diagnosed with HH 2 weeks ago. This was good news for me as I've been looking for a diagnosis for various symptoms I've been experiencing for 6 years (I'm 31). The main symptoms are fatigue, brain fog, headaches, dizziness, low mood and low sex drive.
I had my blood tests done last week. I'm still awaiting the genetic test but that's a formality given my twin brother's diagnosis.
My Iron level was within the normal range at 37, but my Ferritin was 402 and Transferrin Saturation 87%.
I've not spoken to my GP about these results as she's on holiday but I asked the practice to have another GP call me to run over them. When she called she didn't seem like she'd looked at my file beforehand or knew what I wanted but was looking at the results as we were speaking. She told me that yes they were raised but that they're nothing to worry about and that it's not unusual for others of my age to have similarly raised levels. When I asked about bloodletting she said that it wouldn't be necessary and that I'd just be monitored...
Is she right? I hope not as I would like to think that it's HH that's causing my symptoms and that through treatment they can be allieviated so that I can get get back to good health.
Any advice is much appreciated!
Paul
I had my blood tests done last week. I'm still awaiting the genetic test but that's a formality given my twin brother's diagnosis.
My Iron level was within the normal range at 37, but my Ferritin was 402 and Transferrin Saturation 87%.
I've not spoken to my GP about these results as she's on holiday but I asked the practice to have another GP call me to run over them. When she called she didn't seem like she'd looked at my file beforehand or knew what I wanted but was looking at the results as we were speaking. She told me that yes they were raised but that they're nothing to worry about and that it's not unusual for others of my age to have similarly raised levels. When I asked about bloodletting she said that it wouldn't be necessary and that I'd just be monitored...
Is she right? I hope not as I would like to think that it's HH that's causing my symptoms and that through treatment they can be allieviated so that I can get get back to good health.
Any advice is much appreciated!
Paul
I think that you need to go back to that doctor and ask to be referred to a Heamatologist as from my experience your results and symtoms show that you have HH and should tart some sort of treatment before you develop something serious.
Please go back to your doctor and ask for a second opinion.
HH will affect you and your life not your doctors!!
When I was diagnosed my ferritin was 700 and my TS was90% but I wa 57 so buy the time you get to 57 your levels are likely to be much higher.
at that time I was under a liver specialist who said it was nothing to worry about and that they would leave any treatment until I my ferritin wa 1000 plus.
My wife insisted that we see a haematologist and when we saw her she was horrified by my liver specialists comments and started me on weekly phlebotomist es (giving blood) until my level was below 50.
My daughter lives in Glasgow near Darnley and her doctor was unsure about Hh and told her that her results showed she did not have HH, she showed me her results and I thought that she had HH and spoke to my haematologist who confirmed that she hads HH.
I think you have to push for treatment, my issues particularly the. Brain fog reduced as soon as I started giving blood.
At the end of the day this is not going to go away it. Will only get worse, so the earlier you can start som escort of treatment the sooner you will start feeling better an will stop the permanent damage that can result from HH
we love Glasgow and will be making our 4th visit this year in August
All the best
Steve
That's crazy that a 'Specialist' could be so off the mark!
I'm quite confident now that the Haematologist will confirm that I need my blood taken. It's terrible that health professionals here are so uninformed when it comes to HH. If they weren't, I'd likely have been diagnosed several years ago. There must be plenty of people in Glasgow with the same issue. I've heard that one of the theories as to why Glaswegians are so unhealthy (apart from all the deep fried rubbish) is that there are high levels undiagnosed HH. I might start a campaign :)
That's good to hear that the brain fog reduced as for me, that's one. Of the most debilitating aspects...
I'm glad yous enjoy your visits to Glasgow, I do like to think we do our best to make visitors feel welcome. I see you're from Luton, I love Shimla Indian restaurant there! :)
is the Shimla the one at the top of Wellington Street in Luton Town centre? we used to go there a lot if it is, havn't been there for a long time though.
I hope you have been able to start treatment.
My serum ferritin was 387 at diagnosis and my transferrin saturation was 89% and the gastroenterologist was sufficiently concerned to refer me immediately to a haematologist and treatment started fairly quickly.
My diagnosis followed an ultrasound scan for gallstones which showed there was a problem with my liver. Things moved very quickly from that point.
The shocking thing for me was that when I asked for a print-out of all of my blood test results over the 3 previous years, I noticed that my serum ferritin, transferrin saturation and liver enzyme levels had been significantly elevated for over a year before diagnosis.
On the consultant's computer screen they show up in bold red font. I asked why the haemochromatosis was not picked up sooner. The consultant said "it depends whether the person who ordered the tests looks at them".
What is most upsetting is that I may have avoided some of the permanent joint degeneration in my hips and feet that causes me permanent pain and mobility problems had those results been acted on more quickly. Luckily my liver has gone back to normal and was not permanently damaged.
So do push to start treatment quickly as some symptoms can reverse, and others will not and the longer you have elevated iron levels, the more your body will be damaged.
Oh - the Luton connection! I lived in Luton for the first 6 months after arriving in the UK and I remember seeing the Troggs at the Mad Hatter. We regularly had pheasants and deer in our back garden and travelled extensively around Hertfordshire. I have fond memories of living there.
All the best, Christine
i've seen 3 different hematologists in the U.S. Thank God 2 said they would treat (and maintain at low numbers). The 3rd (from UCLA!) said she wouldn't bloodlet until Ferritin reached 1000!! is this a new trend so that they'll have you as a serious patient for the rest of your short life?!?!...
At 1000 10% of patients already have some organ damage! Why in the world would they wait until there's a chance of permanent organ damage?? And that's from THEIR perspective. Truthfully there's a whole other serious issue as follows.
Doctors seldom focus on the Transferring Saturation issue (or the rise in saturation immediately after every phlebotomy.)
iron must be safely transported by transferrin when travelling through blood stream, or its an absolute free radical poison, causing cellular damage everywhere; Extreme fatigue comes with this, plus for me nausea and a general "not well" feeling even though i have no liver or organ damage (originally caught my HCC at 650 Ferritin level).
The free radical episodes also can cause extreme brain fog. There's debate over whether iron crosses the brain barrier, but i've tested myself over & over and whenever my saturation is in alert status (meaning there's free radical iron unbound in my bloodstream) my brain fog is most intense AND my central sleep apnea gets worse (central apnea is the rare type where the brain stops telling your lungs to breathe during REM sleep especially).
Once your ferritin is truly low (for me, that means below 40-50), my fasting saturation finally drops--and as Stephen has also observed, my brain fog significantly clears (and my central apnea tends to get better). This must be because the body is trying to conserve the little iron thats left in storage and doesn't release it into your blood stream as readily. it truly should be maintained LOW for best brain and body health. Though few hemotologists are sensitive to this issue, there are those who wlll maintain below 50.
Also watch your diet--it DOES matter keeping diet low in iron, because high iron meals will send you into transferrin saturation epidisodes! Stored iron is NOT the only issue!
And Vitamin C not only causes more iron to be absorbed from food, it also releases iron from storage (So large amounts of Vit C also can send you into T Saturation Episodes, and MSM also can by releasing iron from storage). Best Wishes! "