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.
Hello,
I'm a 35 year man and just got the news i got HH. To make a long story short the following is my history and my current symptoms i'm having. Please help me sort out if it could be related to HH.
2013 i started getting lots of infections. Treated with antibiotics 4-5 times since then. Also started getting tinnitus and weird sensations in my body when coughing. Electric like stings down my arms and a feeling of coldness all over my upper body.
2014 feb i started getting really bad nerve pain in my feet. Also my muscles (calves) started twitching nonstop. And then spread to all over the body. I've been having these twitches mostly in my legs ever since i started and every second every hour of the day. I also started getting really tired but in a weird way. Not sleepy tired but the kind of tiredness that feels like you just don't have the energy to stay on your feet, So all i did for a while was to lay on the side in the couch. I went to a neuro-specialist and they did not find anything in the spine except a small malformation in some vein. Blood tests did show a severe vitamin d deficiency and a smaller deficiency in b12. Also my testosterone was in the lower range of the reference scale.
I've been going to the dr alot in this last 20 month and they did a new full chart of blood tests this last month. It came back with elevated iron and lowerd transferrin. So they ordered a gene test wich came back positiv for HH. I then did an mri of the abdomen and it showed a big accumulation of iron in my liver. I'm going to see a specialist here in Sweden in early dec this year.
I also started to eat really clean about three month ago and is currently taking the following supplements wich seems to be helping with my tiredness and some with the twitches:
Probiotics
Vitamin d
Vitamin b12 injections and an oral b12 complex
Calcium
Magnesium
Trace minerals mix (without iron)
I know i will get answers like "it could be anxiety" and stuff but this is totally out of the question. I have a family (two kids) whom i love and i have a job i really like and gives me a lot of free time. I only work like three days a week. I have no economic problems and other from these symptoms i'm basically feeling perfect. I'm training a little bit since the pain limits me but normally i am very active and train a lot.
Here's some more weird symptoms i'm having and hopefully someone on this forum can help me out?
Muscle twitches most in legs but sometimes all over
Nerve pain like electric feeling down in my feet
Pain in my lower back but to the sides
Severe stomach pain after eating all over but mostly lower left quadrant
Frequent urination about 15 to 20 times / 24 hours
Tinnitus ringing in the ears non stop
Extreme fatigue
So please help me out if you know if these symptoms is related in some way to HH. Or if you know they most certainly is not.
Thanks
/
Max
I'm a 35 year man and just got the news i got HH. To make a long story short the following is my history and my current symptoms i'm having. Please help me sort out if it could be related to HH.
2013 i started getting lots of infections. Treated with antibiotics 4-5 times since then. Also started getting tinnitus and weird sensations in my body when coughing. Electric like stings down my arms and a feeling of coldness all over my upper body.
2014 feb i started getting really bad nerve pain in my feet. Also my muscles (calves) started twitching nonstop. And then spread to all over the body. I've been having these twitches mostly in my legs ever since i started and every second every hour of the day. I also started getting really tired but in a weird way. Not sleepy tired but the kind of tiredness that feels like you just don't have the energy to stay on your feet, So all i did for a while was to lay on the side in the couch. I went to a neuro-specialist and they did not find anything in the spine except a small malformation in some vein. Blood tests did show a severe vitamin d deficiency and a smaller deficiency in b12. Also my testosterone was in the lower range of the reference scale.
I've been going to the dr alot in this last 20 month and they did a new full chart of blood tests this last month. It came back with elevated iron and lowerd transferrin. So they ordered a gene test wich came back positiv for HH. I then did an mri of the abdomen and it showed a big accumulation of iron in my liver. I'm going to see a specialist here in Sweden in early dec this year.
I also started to eat really clean about three month ago and is currently taking the following supplements wich seems to be helping with my tiredness and some with the twitches:
Probiotics
Vitamin d
Vitamin b12 injections and an oral b12 complex
Calcium
Magnesium
Trace minerals mix (without iron)
I know i will get answers like "it could be anxiety" and stuff but this is totally out of the question. I have a family (two kids) whom i love and i have a job i really like and gives me a lot of free time. I only work like three days a week. I have no economic problems and other from these symptoms i'm basically feeling perfect. I'm training a little bit since the pain limits me but normally i am very active and train a lot.
Here's some more weird symptoms i'm having and hopefully someone on this forum can help me out?
Muscle twitches most in legs but sometimes all over
Nerve pain like electric feeling down in my feet
Pain in my lower back but to the sides
Severe stomach pain after eating all over but mostly lower left quadrant
Frequent urination about 15 to 20 times / 24 hours
Tinnitus ringing in the ears non stop
Extreme fatigue
So please help me out if you know if these symptoms is related in some way to HH. Or if you know they most certainly is not.
Thanks
/
Max
Welcolme to the site, I could have been reading my own life story reading yours.
You seem to have classic HH symptoms.
Have you stared any treatment like giving blood to reduce the iron?
HH affects so many things and just about all of yours are HH symptoms that I have either had or heard that others have had.
I also suffered from what people on the site term brain fog, for a while before I was diagnosed I thought that I was developing dementia, but this has eased since I have been de-ironed although the symptoms will not totally go, and I can tell when I need to give blood as I start getting the symptoms back again.
I was advised to take zinc supplements as these help with our immune system, and illnesses like an iron rich environment so we with HH tend to suffer more illnesses and when we get something it tends to hit us harder than other people.
The supplements that I take are magnesium, zinc and milk thistle for my liver as this is supposed to help reduce the iron.
Have you started any treatment?
I too suffer as many others do with tinitus and this does get better once you are de-ironed, mine has not completely gone but is so much better.
Yous should have your family checked as this is a gene thing and is passed on via our genes, I had my family tested and my brother has HH, my daughter has HH, my wife was found to be a carrier and my son is a carrier with a possibility of developing it fully as he has many of the symptoms.
I was diagnosed with HH after I had a chest infection that I could not get over, I had it for three months and dont remember my birthday in December or Christmas that year as I was so ill.
I was on many anti biotics and when I finally got over it I was so fatigued that I kept going back to the doctor and he did some blood tests that eventually led to my HH diagnosis.
I have been de-ironed for over a year now and have to give blood 4 times a year to keep the iron down, although that is to be reviewed as I dont think it is enough.
I often have muscle spasms when I stretch if I am laying down or have just woken up.
The nerve pains I describe as burning sensations in my arms and toes, plus pains in the joints of my 1st fingers.
interestingly, both my daughter and I suffer from static shocks in some stores when my friends or family seem to be ok.
If you search my name on this site I did keeep a record going of my treatment and how I felt, I think that I entitled it "First Venesection today", you may find that helpful on what to expect.
I see a heamatologist who has been fantastic and really understands my condition, I also see a liver specialist who is staring to come around and understand my symptoms and issues.
Let us know how you get on, please feel free to ask anything on this stite you are amongst friends who understand what you are going through as we share HH as well.
Take care
Steve
I meant to add that anxiety is a classic of HH as well, HH causes major issues and Hemminway the writer commited suicide because of HH.
Regards
Steve
Welcolme to the site, I could have been reading my own life story reading yours.
You seem to have classic HH symptoms.
Have you stared any treatment like giving blood to reduce the iron?
HH affects so many things and just about all of yours are HH symptoms that I have either had or heard that others have had.
NO I'M GOING TO START TREATMENT EARLIEST DEC 7. THIS IS WHEN I HAVE THE APPOINTMENT WITH THE HEPATOLOGIST.
I also suffered from what people on the site term brain fog, for a while before I was diagnosed I thought that I was developing dementia, but this has eased since I have been de-ironed although the symptoms will not totally go, and I can tell when I need to give blood as I start getting the symptoms back again.
I ALSO SUFFER FROM BRAIN FOG SO THIS IS SPOT ON. BUT I DIDN'T LIST IT BECAUSE IT'S SO HARD TO DESCRIBE. FEELS LIKE I ONE SECOND JUST THINK I'M TIRED AND THE NEXT I FEEL DEPRESSED BUT I'M NOT. FEELS LIKE I'M UNDER THE INFLUENCE OF SOME DRUG AT TIMES. VERY STRANGE FEELING.
I was advised to take zinc supplements as these help with our immune system, and illnesses like an iron rich environment so we with HH tend to suffer more illnesses and when we get something it tends to hit us harder than other people.
OK I WILL TRY THIS ASWELL. THERE IS SOME ZINK IN THE MINERAL MIX I TAKE BUT I WILL ADD EXTRA. AT BED TIME RIGHT?
The supplements that I take are magnesium, zinc and milk thistle for my liver as this is supposed to help reduce the iron.
Have you started any treatment?
MILK THISTLE I HEARD OF. I WILL TRY THIS ALSO. I HAVE NOT STARTED ANY TREATMENT OTHER THAN EATING EXTREMELY CLEAN AND SUPPLEMENTING WITH VITAMINS AND MINERALS.
I too suffer as many others do with tinitus and this does get better once you are de-ironed, mine has not completely gone but is so much better.
THIS IS GREAT NEWS! THIS IS A REAL PAIN IN THE ASS. THIS ALSO GETS WORSE AFTER I EAT.
Yous should have your family checked as this is a gene thing and is passed on via our genes, I had my family tested and my brother has HH, my daughter has HH, my wife was found to be a carrier and my son is a carrier with a possibility of developing it fully as he has many of the symptoms.
OK I'M SORRY TO HEAR THAT. I ALREADY TOLD MY SISTER AND PARENTS TO GET TESTED. MY WIFE IS ALSO GETTING TESTED AND IF SHE IS A CARRIER THEY WILL TEST THE KIDS.
I was diagnosed with HH after I had a chest infection that I could not get over, I had it for three months and dont remember my birthday in December or Christmas that year as I was so ill.
I was on many anti biotics and when I finally got over it I was so fatigued that I kept going back to the doctor and he did some blood tests that eventually led to my HH diagnosis.
OK THIS SEEMS FAMILIAR. THIS IS BASICALLY HOW I FELT DURING THIS INFECTION PERIOD IN 2013.
I have been de-ironed for over a year now and have to give blood 4 times a year to keep the iron down, although that is to be reviewed as I dont think it is enough.
I SO HOPE THAT ONCE I START TREATMENT SOME OF THE WORST SYMPTOMS WILL GO AWAY.
I often have muscle spasms when I stretch if I am laying down or have just woken up.
OK, BUT I DON'T HAVE SPASMS. I HAVE LIKE SMALL TWITCHES WITHIN THE MUSCLE ALL THE TIME. IT IS VISUAL TO THE EYE.
The nerve pains I describe as burning sensations in my arms and toes, plus pains in the joints of my 1st fingers.
YES THIS IS LIKE I FEEL. WEIRD SENSATION.
interestingly, both my daughter and I suffer from static shocks in some stores when my friends or family seem to be ok.
If you search my name on this site I did keeep a record going of my treatment and how I felt, I think that I entitled it "First Venesection today", you may find that helpful on what to expect.
OK I WILL SERARCH FOR THIS THANKS.
I see a heamatologist who has been fantastic and really understands my condition, I also see a liver specialist who is staring to come around and understand my symptoms and issues.
I CAN JUST HOPE I GET A GOOD ONE. BUT STILL I CAN'T DO ANYTHING ELSE THAN DESCRIBE HOW I FEEL AND WHAT MY SYMPTOMS ARE. HOPEFULLY HE'S EXPERIENCED.
Let us know how you get on, please feel free to ask anything on this stite you are amongst friends who understand what you are going through as we share HH as well.
Take care
Steve "
THANK YOU SO MUCH FOR THE REPLY. IT MADE MY MISERABLE DAY LESS MISERABLE.
Glad to have been able to help you.
Regards
Steve
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). You will have added complications of organ damage unfortunately.
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! "
My skin is suffering with this disease..I don't know if anyone else has the same problem..My mom's cousin also had high iron..Her face literally developed craters...Like you, my joints suffer..my hands and thumb base have morphed into something weird, and my grip is so weak! Any feedback is welcome. Thanks and all the best to both of you.