Extremely high ferritin levels
 

I am a male aged 51. I recently had some blood work done in advance of a routine colonoscopy. When I showed up for my appointment my doctor discussed the results with me, noting that my ferritin level was 1112 ng/ml, while my other iron tests were normal ie iron - 94, TIBC - 267, % saturation - 35 and UIBC - 173.

I also had a complete blood count with diff-plt done and all results were within the normal range. He asked me to have the test repeated, but the result came back high the second time. He has now asked the lab to test c-reactive protein. My colonoscopy resulted in the removal of three polyps (tests have since proven negative with these) and a diagnosis of diverticulosis.

I am anxious now as to the cause of the extremely high ferritin level. I have one theory, and that is metabolic syndrome. I am on Lisinopril-HCTZ for high blood pressure. My cholesterol results have never been good, with LDL bad and HDL not great. Triglycerides are unknown. I have abdominal fat that I have never been able to get rid of in many years, despite trying. I am not fat anywhere else apart from a bloated abdomen.

My work involves long hours, stress, a lot of traveling and eating in restaurants and I do not sleep well. My relationship with my girlfriend is not good and I may have to move out soon. Taken together, I am not surprised that my health is suffering. Any thoughts?

Very high ferritin suggests you are possibly getting too much iron in your food/vitamins.

OR....you should be tested for hemochromatosis.
http://bloodjournal.hematologylibrar...ull/111/7/3373

If you are of Irish ancestry? 1 in 3 carry the gene for this disorder.

Thanks for the reply. I am of Scottish descent, but my iron levels are normal, only the ferritin levels are high. From what I have read this means inflammation or infection of some kind. I have no symptoms of infection. Also I do not take iron supplements.

This article explains further:
http://docs.google.com/gview?a=v&q=c...in&hl=en&gl=us

Thankyou. I had read this article already online, but it seems that an extremely high ferritin level is one of these things where the diagnosis might take several tests to come to a conclusion. I am awaiting the results of c-reactive protein. If it is also high I guess more testing will follow.

A "heavy middle" is indicative of high cortisol - which is not done with routine blood tests. You should get serum cortisol and a 24 hour cortisol (urine) done to see what your cortisol levels are. ACTH is also another test (ACTH is what the pituitary secretes to tell the adrenals to release cortisol). Look up Cushing's syndrome.

Are you taking any steroids - prednisone, inhalers, etc?

Thanks. No, I am not taking any steroids. The only meds I take are the ones for hypertension - Lisinopril-HCTZ. I will check out Cushing's Syndrome. High cortisol wouldn't surprise me. I am constantly under stress for one thing or another.

The crazy thing about iron overload is that it can/will cause inflammation. And also depletes vitamin C and other anti-oxidants. So I wouldn't be surprised if your CRP come back high. The best low-tech approach would be to start donating blood to reduce your iron stores. Giving blood is a healthy thing to do for men and post-menopausal women as long as they have enough to give. You just need to monitor your blood counts and FE. You can be very aggressive and do it weekly with close monitoring by your doc.

My husband has both....iron overload and high CRP. And since FE is an acute phase reactant, just about anything will cause it to spike when FE is already elevated.

Excess iron gets stored or deposited into other organs. This will not be picked up by blood tests. There are some places that can do a special MRI of the liver to detect excess iron deposits. The pancreas and heart are usually effected first.

You may want to check out www.ironoverload.org

Marlene

My cousins with hemochromosis had to get liver biopsies. It runs in my family as well.

The Cushing's is not caused by stress - it will make the body be under stress but the source will be a tiny tumor somewhere. Mine was in the pituitary.

My results came back and my CRP is normal. Ferritin, of course, is still high. My other iron tests are also normal.

make sure you get and keep copies of all your lab work, docs have been known to say something is normal when it is not

That is EXCELLENT advice!

Thankfully, I am not so stupid as to walk out of there without the lab results. I have learned from experience. Anyhow, I went to see my PCP today, and his diagnosis is metabolic syndrome, especially in the absence of any other markers. I certainly do have all the usual symptoms, like high BP, cholesterol, blood sugar, abdominal fat. However, I asked if metabolic syndrome would be enough to drive the ferritin level to 3 times the upper limit. He was not sure, but said he would consult with a blood specialist and get back to me. I may need to have more blood work done. If I had not asked, I figure he was happy to let it go at that.

I am thinking that Cushing's syndrome in MALES is hard to identify and doctors often miss it. In females the hormone changes are dramatic but in males they are just "more male".

The presence of metabolic syndrome is common. But if you have Cushing's, it will be more extreme.

Don't know your work or environmental history, but consider a blood lead level? High iron is an indicator of subtle lead poisoning. Don't know about normal serum iron with high ferritin.

I learned this the hard way.

Cushing's in men is the same as women - oddly, testosterone is said to go low in most cushies, not high but there are exceptions and I was one. I also had low cholerestol, normal glucose and low triglicerides but I had a red face, round belly, purple stretch marks and could not heal for nothing. Bye bye immune system.

I have a bud who used to have Cushing's that I can put you in touch with if you want to talk to a man with hormonal issues. He had the belly, striae, fatigue, etc. He would post a lot of pics. I think he would talk to you. I am still in touch with him and his wife.

I'm glad you are going to continue to pursue the high ferritin. You can still have too much iron even though your other labs are normal. There are also other things to rule out and a hematologist sounds like a good ideas to cover all bases now and not wait.

Metabolic syndrome can also be a result of too much iron being stored in the organs. Metabolic syndrome is a symptom of something else going wrong. Like I stated before, iron, when you have too much gets stored in your pancreas, thyroid, liver, heart, bone marrow, pituitary and causes many problems like diabetes, high blood pressure, heart problems, hormone insufficiencies and more.

IMO, giving blood has many benefits....it reduces your iron and gives life to others. And your doc can monitor your progress closely. The Iron Overload organization is a good resource to check out if you get a chance.

Good luck and keep us posted.

Marlene

just did a quick search, it does appear to be elevate ferritin>metabolic synrome, rather than metabolic syndrome>elvated ferritin

Excuse me for resurrecting this old thread. I went through this same thing a couple of years ago - it really stressed me out. My ferritin was over 600 and my iron saturation was around 90%.

My GP was a jerk and for six months tried to convince me I had fatty liver. He simply would not consider any other conclusion - but my CRP was normal and I am very fit so fatty liver did not make sense to me. Especially with the CRP being normal.

So I told that GP to jump in the lake and the blood services here (new zealand) treated me for suspected haemochromatosis. I was negative on the gene test but 20% test falsely as negative on the gene testing and also they only test for three out of over 40 different suspected genetic profiles being researched for iron overload.

Worse than this is a total prejudice about nutritional causes of iron overload. A large steak has far more iron than a vitamin pill. If you eat red meat heavily over a number of years you will almost certainly accumulate iron. Same with seafood, but most medical people just prattle off what the drug companies tell them - which is that vitamins and supplements are bad and people should get their nutrition from food.

Anyway the blood service recognized that I probably had iron overload - immediately after the first treatment the hemorrhoids I'd had for 6 months disappeared and have never returned.

The sleep apnea which is associated with high red blood cell count took longer but has also gone. Those were my only physical symptoms apart from the blood work.

They have by now removed all of my blood many months later. At first I had venesection every two weeks. Now it is every 3-4 months.

Basically Iron overload is very commonly misdiagnosed as metabolic syndrome and/or fatty liver. If your CRP is normal and you have no known infections then too much iron is the logical culprit - but many GP's seem to pay their mortgage by prescribing medication so they deliberately misdiagnose.

The treatment for Iron overload is non-drug, simply being venesection and there is also some what of a government cover up as they don't want to screen the general population due to funding.

In all the experience left me greatful for losing my hemorrhoids and sleep apnea - and possibly averting much worse disease. But deeply disillusioned with the medical profession in my country.

Glad you are feeling better. I know my cousins had to do the phlebotoby treatments quite a bit in the beginning, but one is at every two months and the other is at every 3 now.

I hope you get the better genetic testing in the future - you can pay for them yourself! I have the gene.

Possible Hemochomotosis
 

My husband has just received the numbers back on some blood work -
Iron 231 mcg/dl
Direct TIBC 244 mcg/dl
% Sat (Fe,DIBC) 95%
Ferritin 5363

We are waiting for an appt with a hematologist but we can't find much info on what would appear to be an EXTREMELY high ferritin # :confused:

Can anyone shed some light? He does have just about all the symptoms of hemochromotosis (joint pain, esp hands; low sex drive; chronic fatigue, low energy) and he is Northern European decent. His father died at age 47 from cardiovascular disease and his mother from lung/esophageal cancer.

Any thoughts??

Labs can make mistakes.

I think a specialist would reorder the tests anyway.

There is alot on the net about hemochromatosis, now, so
do some homework while you wait for the appointment.

THANKS ... we have been but I thought it was worth asking :)

LOL its funny I just came across my post doing a google search

The years have passed quickly and I have been having regular 3 monthly venesections ever since they initially removed all of my blood in 2011.

No recurrence of the symptoms.

Also I became mainly vegetarian last year & my blood profiles are excellent now.

I cant recommend venesection enough. My older brother has been diagnosed with iron overload syndrome now too.

Also one of my friends got it as a consequence of heavy blood transfusions some years ago -unfortunately for him he may have organ damage

Its just one of those things that crop up with middle age - get it treated

Thanks for Update
 

Thanks so much for stopping to update!:)
Glad all is well with you now!

DejaVu

Hi. Serum iron tests are useless to rule it out. The test has to be TIBC. Also a liver function test is really important regardless of the cause. Scotland has a very high incidence of this disease as well.

Oops just saw you listed your level. A low inflammation diet may help with the bloat. I see an integrated md. She says bloat is bad! Mine is from prednisone. The diet has helped a lot. Good Luck.

I know all about Hemochromatosis. I had an aunt die from the ramifications of it. I have the opposite problem. While her liver held onto iron, mine thinks that i don't need any. It is just as scary and can kill you faster than the other.