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.
Hi everyone,
My husband has been ill and we're seeing a bunch of different doctors. It turns out his ferritin is very high (1182). (Iron level is slightly low at 62, according to doctor's letter.) He is an ironworker and works with rebar daily, and has for close to 25 years. He has always come home covered in rust. When he sweats, it comes out of his pores.
Apparently, a doctor a few years ago mentioned his high ferritin, but didn't pursue a dx. Now he is having just about every symptom of iron toxicity - brain fog, shaking, very bad arthritis, abnormal blood tests (liver, kidneys, blood glucose, inflammation, etc.), blacking out, irritability, weakness, ED, high BP, heart palps & PVCs, anxiety, etc. He just had a abdominal ultrasound, and it was normal.
I am sure a lot of this is from his occupation, but I am wondering if he might have hemochromatosis and perhaps that's why this is so bad. His coworkers don't seem to have these issues. Could it be that my husband chose the worst job possible for his condition? Oh, the iron-y! He can retire in 4 years, but need to keep working until then in order to get his benefits.
We removed grains and sugar from his diet and are kind of doing the Paleo thing. He's feeling better than he has in a long time. (Now I'm worried the meat (iron) might be bad in his case. I have some research to do. He's having a hard time concentrating, so I'm trying to help.)
I guess we'll know more soon, but I just needed to "talk" to someone.
Thanks for reading!
My husband has been ill and we're seeing a bunch of different doctors. It turns out his ferritin is very high (1182). (Iron level is slightly low at 62, according to doctor's letter.) He is an ironworker and works with rebar daily, and has for close to 25 years. He has always come home covered in rust. When he sweats, it comes out of his pores.
Apparently, a doctor a few years ago mentioned his high ferritin, but didn't pursue a dx. Now he is having just about every symptom of iron toxicity - brain fog, shaking, very bad arthritis, abnormal blood tests (liver, kidneys, blood glucose, inflammation, etc.), blacking out, irritability, weakness, ED, high BP, heart palps & PVCs, anxiety, etc. He just had a abdominal ultrasound, and it was normal.
I am sure a lot of this is from his occupation, but I am wondering if he might have hemochromatosis and perhaps that's why this is so bad. His coworkers don't seem to have these issues. Could it be that my husband chose the worst job possible for his condition? Oh, the iron-y! He can retire in 4 years, but need to keep working until then in order to get his benefits.
We removed grains and sugar from his diet and are kind of doing the Paleo thing. He's feeling better than he has in a long time. (Now I'm worried the meat (iron) might be bad in his case. I have some research to do. He's having a hard time concentrating, so I'm trying to help.)
I guess we'll know more soon, but I just needed to "talk" to someone.
Thanks for reading!
I am not sure about your husbands occupation affecting his iron level, but from what you say regarding his Ferritin levels and his symptoms I would say that it is extremely likley that he has Hemochromatosis.
I would get him to go to his doctor as soon as possible and ask for a genetic test to show if it is Hemochromatosis or not, and if it is have a treatment schedule put in place.
I was finally diagnosed earlier this year after many years of mis diagnosis and advised not to eat too much red meat as this is high in the easily absorbed form of iron, they dont think that iron in vegatables is that easily absorbed as it is a different form of iron, and you need to have a balanced diet.
Avoid Vitamin C as this increases iron being absorbed, and cut back on the alchohol as this is back for the liver if you also have hemochromatosis.
I was put on weekly plebotomies where they take a pint of blood the same as iy you donate a pint and this reduces the iron in your body eventually down to a safe level which is 50 or below.
Have a look at the responses on this site as there is a wealth of useful info and people to answer your questions.
There are some good books on the subject as well, but what most people myself included have found is that there is so much ignorance within the medical profession regarding HH and when and how to treat it.
If your husband does have HH and I suspect that he does, push for answers and treatment do not delay treatment as HH does not go away it gets worse and is a killer if not treated, the cost of the genetic test is very small and the treatment is so simple just giving blood.
I can relate to the brain fog and the aches and pains, I had been diagnosed with mild IBS, Astma, mild arthritus amongst many other things and since I have begun treatment the IBS has gone away, the brain fog has eased and I have not used an inhaler this year, the joint pains have almost disappeared and even colours seem to be brighter to me.
Please make your husband go back to his doctor and ask for the genetic test for hemachromatosis.
Let us know how you get on, we are always happy to talk about this insideous condition, talking about it has helped me as I know that I am not alone and on this forum I can speak to people who are also going through the same things as me.
All the best
Steve
Thank you for the info! I really appreciate it. I will definitely get him tested. He just saw a gastro, and he's seeing a rheumatologist Monday and a Cardiologist Tuesday (because his cholesterol and triglycerides are dangerously high.) He's also getting an endoscopy and colonoscopy in a week.
What type of doctor should he see for suspected HH? A hematologist perhaps?
We will also cut down on the red meat. Thanks!
His occupation can definitely cause iron toxicity, but I think you're right about it not being the cause of his high ferritin. I would think toxicity from the rebar would be more of the free floating ferritin. (I know there's a name for that.) I should also mention that a former doctor told him his "iron was extremely high" a while back as well, but nobody ever did anything about it and my husband just doesn't follow up on things sometimes. He just told me this recently.
Thanks again!
(Strangely, I have the opposite issue - my ferritin is always under 10. It's been as low as 2. I have to take iron daily.)
He went to a rheumatologist today that says he does not have HH. Apparently, he was able to look into my husband's blood work results and see that his saturation was not high. He wrote it on my note. I don't have those tests, just a letter from another doctor stating that his ferritin was 1182. I can't see the rest of the blood work, and my husband forgot to pick it up today. (He also locked himself out of the house. **brain fog**)
So, the rheumatologist seems to think his ferritin is high from his high cholesterol. I don't know what that means, but I'm going to research it. The last cholesterol reading he had a few weeks ago was 600 (should be under 200) and his triglycerides were almost 300 (should be under 150). His blood even looks "lipemic" to the lab by sight. (Milky from the fat in his blood.)
I think something's up because nobody else in his family even has high cholesterol (they're all low), and my husband (53) works a very physical job and is not overweight. I guess we'll keep looking for answers.
Thanks again!
I am going to look into chelation more. I am having him take malic acid right now - because I take it and it helps me. He's also taking a multi-mineral (no iron). It seems to help.
I agree with \Starflower, get your husband to see a Hematologist, they are the ones who know all about the blood and what all the tests and results mean.
Brain fog is typical with HH, I know that may not be the cause, byr a hematologist would be able to rule this out and say what it is.
Regards
Steve
Again, if I recall correctly. It's been a while since I read up.
I thought I'd stop in and update. We still don't have answers except that he doesn't have the HH gene, and although his ferritin is high, he is borderline anemic.
As you know, he had a ferritin of 1182. It then jumped to 2000.3, and then his most recent was 900+ (I don't have the exact number).
I requested a brain MRI for him to look for iron. His doc agreed but didn't put iron deposition as a reason. he put depression. The MRI came back as "normal", but I have a copy of the disk, and I don't think it is normal. I am not a trained radiologist, so I could be wrong. My gut feeling is that the images show iron deposition. (It also obviously shows many tumors or polyps in his sinuses, and nothing was mentioned of those either.)
He's also had a change in personality, and is forgetting things often. His hands are also numb and he's dropping things constantly. His arthritis is getting really bad. I am really worried.
He is waiting to see a hematologist later this month, but I think I just want to bring him down to Boston where he can get the best of care. The docs near us have a watch and wait attitude. Meanwhile, I see my husband's health going downhill. It's affecting our marriage (of 19 years) and our kids (9 and 12).
I did find a researcher/MD in Boston who specializes in this type of iron issue. I emailed her hoping she can help guide me.
Thanks for listening and thanks for your responses!
So sorry to here of your husbands ongoing issues.
Too much iron however it is caused can cause the sort of issues that you are seeing, and I would ask your doctor about phlebotomies to reduce his iron level. Iron causes free radicals to be released in the body and cause issues.
There are rarer forms of HH that do not show in the normal HH tests, I know as they had my blood tested for rarer types of HH after they failed to diagnose HH in the initial test, however that was a hospital error and I was eventually diagnosed with normal ? HH
To much iron can cause so many issues, some that are reversible but if left can lead to serious issues or worse. I would ask for another opinion or see if you can find another doctor.
The medical profession seem to be in the dark about so much to do with HH.
All the best to both of you
Regards
Steve
You mentioned that your husband does not have the HH gene. My understanding (I am not a doctor) is that haemochromatosis can be caused by mutations in the HAMP, HFE, HFE2, SLC40A1 or TFR2 genes - I don't think there is a single gene for it, but rather a mutation on a gene relevant to haemochromatosis. This leaves me wondering if your husband has had a full genetic test for haemochromatosis and whether he has seen a consultant haemotologist, or whether the opinion that he does not have HH is gained only from blood tests for ferritin, transferrin saturation etc. and consultants from other medical disciplines have diagnosed on the basis of those results. My understanding is that the only way of removing excess iron from the body is by venesection. I do hope your husband gets what he needs as he sounds very poorly and you are clearly worried about him. If he has not had a genetic screen for HH, I would insist on one. Christine .
As well as venesections or phlebotomies as they are sometimes called you can have iron reduced by taking medication it is called "chelation", and is a possibility for anyone who cannot have the normal treatment via blood removal.
But you do need to get that iron level down as soon as possible, ask to see a heamatologist and do push for a full genetic test.
As I said previously one hospital in London said that my test showed that I did not have HH, so my blood was sent to Addenbrooks for testing for the rarer forms of HH, and Addenbrooks said that I didnt have any so far identified rare forms of HH but that I did have the most common form, so hospitals and doctors do make mistakes.
Please insist on some form of treatment to reduce your husbands current iron overload, you must get the level down.
My Heamatologist wants mine to remain under 50.
Take care
Steve