High ferritin?

[Will2014]

An excellent compilation! I do wish I saw Ferritin on the list, because I'm a bit worried about mine. I've been staying stubbornly high at 500 and 483 the past 2 lab draws, though I am pretty normal otherwise iron wise. My hematocrit was actually a tad low...TIBC normal. I've been trying to scare myself recently by reading about high Ferritin as a cancer marker, and my continued weight loss along with this lab value make me a bit nervous. Anyone else have high ferritin levels? Afraid to take supplements for fear of causing organ damage.

 

[southernlady]

An excellent compilation! I do wish I saw Ferritin on the list, because I'm a bit worried about mine. I've been staying stubbornly high at 500 and 483 the past 2 lab draws, though I am pretty normal otherwise iron wise. My hematocrit was actually a tad low...TIBC normal. I've been trying to scare myself recently by reading about high Ferritin as a cancer marker, and my continued weight loss along with this lab value make me a bit nervous. Anyone else have high ferritin levels? Afraid to take supplements for fear of causing organ damage.

My husband, @Cbramsey, has high ferritin levels...his have remained high since surgery. He WAS taking the full iron regimen recommended by Vitalady but has decreased it to the point of ONE pill a day and it still remains high...in Feb he was still at 469. His weight is stable...actually put on some weight from his low point of 147 (yeah TOO low for someone 5'8"). He is technically overweight now at 177. I do know he got back up to 193 but has since pulled about 20 pounds back off. So he is actively trying to lose about 5 more lbs.

When we met Michelle (Vitalady) & Don for the first time in June 2011, we had the opportunity of having them around for about 3 days. http://www.vitatour2011.blogspot.com/2011/06/day-world-stood-still.html They were ONLY suppose to be there overnight but FATE had other plans. As a result, Charles and I spent a LOT of time with both of them while Don was in the hospital. Talking, learning, etc and one thing Michelle did was ask to see our lab work...she was FLOORED with his ferritin...asked if he could spare some for her, LOL. Mine wasn't shabby that time either. MINE headed south later.

 

[southernlady]

@Will2014, one thing we did discuss just this morning was maybe after his next set of labs (due in August) to just stop all oral iron (assuming it is still running close to THAT high) and see what happens by the time we get the set following in Feb.

 

[Will2014]

@Will2014, one thing we did discuss just this morning was maybe after his next set of labs (due in August) to just stop all oral iron (assuming it is still running close to THAT high) and see what happens by the time we get the set following in Feb.

Sounds like a smart idea., especially since the treatment for hemochromatosis is to physically remove iron by donating blood, or the modern versions of blood letting in a phlebotomists office. The weird thing is how one can actually be normal or slightly low in total iron blood count, but we WAAAY high in Ferritin protein levels. I also have discoloration in my feet that I've had for years that doctors called idiopathic purpura. It's a common symptom of hemochromatosis too. Maybe I've had it long before my surgery and it's unrelated to it. Problem is they don't seem to understand all the mechanisms at work yet regarding iron storage and use. But I'm wary of taking iron supplements also....

 

[DBmom23]

Will, did you have a liver biopsy with your surgery? My doc does for everyone and if you did, you could have the answer re hemochromatosis.

 

[Will2014]

Will, did you have a liver biopsy with your surgery? My doc does for everyone and if you did, you could have the answer re hemochromatosis.

No I sure didn't. To rule out cancer? Seems excessive to check everyone...but guess if you're in there anyhoo and have the liver in your hands, why not? Hehe. I've never been a big drinker...but I do have cancer heavy in my family (Father died lung/brain...brother throat. Both raging alcoholics though...).
I'm going to keep watching it closely. Will keep ya posted!

 

[DBmom23]

The liver biopsy is to look for steatohepatitis (fatty liver) which is generally cured by DS but if there were significant fibrosis, it is good to know. I think most surgeons do not do this.

 

[Bagaof4]

An excellent compilation! I do wish I saw Ferritin on the list, because I'm a bit worried about mine. I've been staying stubbornly high at 500 and 483 the past 2 lab draws, though I am pretty normal otherwise iron wise. My hematocrit was actually a tad low...TIBC normal. I've been trying to scare myself recently by reading about high Ferritin as a cancer marker, and my continued weight loss along with this lab value make me a bit nervous. Anyone else have high ferritin levels? Afraid to take supplements for fear of causing organ damage.

Interesting, Will. I have also had high Ferritin levels since my DS in the high to mid 400s as well. I stopped all iron supplements in April, tested again after 2 months and had a slight drop (446 to 411). Kaiser doesn't seem concerned , but I have read that 'normal' levels for women are much lower than the range they have listed (12-150 ng/mL vs 20-400ng/mL for men. All my other numbers seem pretty good so not sure what to make of it. Thought I was the only one with high ferritin!

 

[Will2014]

Interesting, Will. I have also had high Ferritin levels since my DS in the high to mid 400s as well. I stopped all iron supplements in April, tested again after 2 months and had a slight drop (446 to 411). Kaiser doesn't seem concerned , but I have read that 'normal' levels for women are much lower than the range they have listed (12-150 ng/mL vs 20-400ng/mL for men. All my other numbers seem pretty good so not sure what to make of it. Thought I was the only one with high ferritin!

Thanks for posting Bagaof4! That's why it's so important we all keep each other posted about specific labs, problems we're having ,etc. We are a SMALL group of people world wide with unique problems and benefits related to our surgeries and their aftermath. We owe it to each other to communicate openly and honestly so that we can observe trends, note specific issues we might need to address , etc. Let's keep an eye on it together shall we? I'll be sure to post my next lab results in about a month when due next. I too have basically stopped taking iron supplements to see what happens, though I did take twice this week because I'd not taken any in 5 weeks and thought I was feeling colder than usual...a sign of low iron levels. Thanks again!

 

[Bagaof4]

Yes to everything ^^^^^. Thank you, Will. I will have my 3year labs drawn at the end of September and we will see what the verdict is! It is odd to me that my iron serum level is only 51 (range of 37-145), yet iron stores (per ferritin level) are so high. No one seems concerned. I'm anxious to see what your labs say and so glad I have someone to compare notes with!

 

[southernlady]

Yes to everything ^^^^^. Thank you, Will. I will have my 3year labs drawn at the end of September and we will see what the verdict is! It is odd to me that my iron serum level is only 51 (range of 37-145), yet iron stores (per ferritin level) are so high. No one seems concerned. I'm anxious to see what your labs say and so glad I have someone to compare notes with!

I just went looking at my husband who has been running high ferritin (469 in Feb). Seems his Serum iron (86 with a range of 40-155) is on the low side of normal and two of his iron panel numbers are marked low. However his hemocrit and hemoglobin are normal. The two that are low are Iron Binding Capacity and UBIC.

 

[Bagaof4]

Now I see my latest numbers have my Iron at 48 (37-145 range) and Iron Saturation at a Low of 17 (20-50 range) Red blood cell count has been below the low point of the 'normal' range since my DS. Not sure what all this means if anything.

 

[southernlady]

Now I see my latest numbers have my Iron at 48 (37-145 range) and Iron Saturation at a Low of 17 (20-50 range) Red blood cell count has been below the low point of the 'normal' range since my DS. Not sure what all this means if anything.

Iron sat % is a key in secondary RLS or migraines. http://bariatricfacts.org/threads/low-iron-or-what-to-take-to-a-hematologist.1498/

 

[Bagaof4]

Just seems weird to me that most DSers are fighting low ferritin levels and need infusions, yet a couple of us have unusually high levels. Wish I better understood all the relationships between the different levels and what they mean.

 

[newanatomy]

My ferritin has run high since my DS. I started at the full vitalady recommendation too. Then after I saw my first Ferritin reading I dropped down to 3 iron tablets a day.

Date: 08/14/2014, 12/04/2014, 06/26/2015, Range
Iron, serum 88, 69, 62, (35-155)
Ferritin 436, 410, 285, (15-150)