Check Your Ferritin

[mjames1]

While a complete blood count (CBC) is considered part of routine bloodwork, testing for Ferritin (a protein that stores iron) is usually reserved only when the CBC shows low hemoglobin.

Unfortunately, this approach can miss what has been termed a "hidden disorder" known as Hypoferritinemia without anemia, or in other words, iron deficiency with normal hemoglobin. A condition that exhibits many of the same symptoms as iron deficiency anemia, including fatigue, fast heart rate and palpitations.

How rare it is I don't know, but not rare enough for me to have recently been diagnosed with it!

Long story very short, no bleeding source was found via colonoscopy endoscopy (I was due anyway) and within a month or so my Ferritin returned to normal. The working hypothesis -- and it's only that because of the timing -- is that I had a GI bleed while on AC's (anti-coagulants) and the Ferritin returned to normal when I went off the AC's. The colonoscopy and endoscopy were performed when I was off AC's for over a month so showed no bleeding.

My very non-professional opinion on all this is that anyone on AC's should probably periodically not only have a CBC but also an iron stores panel as well that includes testing for Ferritin. And especially if you have symptoms of iron deficiency anemia. I know I will.

Someone is probably going to ask why I'm not on AC's now, but that's not what this post is all about. It's about people on AC's being aware that bleeding is a possible side effect of AC's and that periodic testing for that possibility makes a certain sense. At least it does now for me.

Jim

[Jalia]

I'm with you here. Some years ago I was being troubled with tachycardia and my GP at the time wanted my ferritin levels checked. They proved to he very low...7 ? I went on a course of iron.

Fast forward a few more years and investigation into my low ferritin with endoscopy showed condition in my stomach known as GAVE..Gastric Antral Vascular Ectasia.This is a very slow bleed in the stomach walls most probably caused by warfarin . This is under control now with a daily iron supplement.

[mjames1 in reply to Jalia]

Smart GP and glad you got things fixed. Do you remember if your hemoglobin was also Low at the time, or normal?

AC's can be life saving, but with them come some risks that require more monitoring than at least the average doctor (and I include ep's here) do.

Jim

[Jalia in reply to mjames1]

From memory I don't believe it was particularly low , if at all. My gastroenterologist told me to ensure I get regular ferritin blood tests . He was prepared to perform ablation therapy on the stomach walls but iron supplements are OK for the present time.

[Hidden]

Jim,

Forgive this stupid question ........... are you talking about ALL AC's without exception or only Warfarin, or only the newer DOAC's ?

John

[mjames1 in reply to Hidden]

Personally I was on Eliquis, a NOAC, during a time frame which may have caused hidden bleeding. But I think the principle applies to any agent associated with hidden bleeds, including Warafin, or even aspirin. And again, I am in no way suggesting anyone not take thinners because of the potential of hidden bleeds or low ferritin. Just that one should be aware of the risks of any medication we take and monitor appropriately.

Jim

[secondtry]

I have found Ferritin levels (normal range 15-300) can vary, mine have been: May 2018: 285, March 2019: 149, May 2020: 135 with no known reason for the drop, possibly incremental diet changes.

In 2018 my Naturopath said that level was not helping my AF and the only way to reduce it is evidently blood letting (couldn't donate blood as taking Flecainide). I declined that option!

[BobD Volunteer]

And then of course there is the opposite problem. Haemachromatosis which can not only cause AF but also many other organ related problems . Fortunately these are very rare conditions which need not worry most of our members.

[mjames1 in reply to BobD]

Haemachromatosis is rare. Iron deficiency without anemia is not.

I agree we should not worry about it --and certainly not a reason to stop AC's.

But since most here are on AC's, which at times can cause hidden bleeding, periodic testing for Ferritin, independent of a CBC, seems quite prudent.

Jim

[mrgwair567 in reply to mjames1]

I totally agree with you Jim. My ferritinlevels go very low at times, and as a result I have iron infusions as I’m unable to tolerate the tablets. I also have colonoscopies and sometimes gastroscopies

to determine the cause. I have had several of these procedures in the last few years

Not one doctor or consultant that I have met has ever made any connection with taking an anticoagulant, Apixaban in my case, with the iron deficiency.

I wonder why that is? Are they unaware that this is a side effect, in some people,

who are taking anticoagulants.

I try to ensure that I have Ferritin blood tests twice a year.

Regards

Lynne

[mjames1 in reply to mrgwair567]

Hi Lynne,

Was your hemoglobin (hgb) normal when your ferritin was low? In the US, hard to get your insurance to pay for iron infusions with low ferritin but normal hgb. I am also intolerant of iron pills. Did you notice any symptomatic improvement with the iron infusions or just a clinical rise in ferritin?

Finding the cause for low ferritin with normal hgb can be complex with thinners just one possible cause. After my colonoscopy, my GI said small GI bleeds are common and it was a reasonable assumption that I bled while on thinners and stopped bleeding off of them, based on the timeline. We will never know for sure but if/when I go back on thinners, I will test ferritin more often.

Jim

[mrgwair567 in reply to mjames1]

Hi Jim

I assume my hemoglobin was low ,as was my ferritin level, as I was feeling extremely breathless at the time, along with other symptoms,

higher heart rate, extreme fatigue almost to the point of exhaustion.

I waited for 6 weeks for the iron infusions ( 2 , one week apart) and it took about 2 weeks for me to feel better again. This treatment is provided by our NHS, and is free.

We are very fortunate!

Regards

Lynne

[patleit in reply to mjames1]

Haemachromatosis not so rare, it is quite high in people of Celtic descent, Ireland, Scotland, Wales and Northern European countries also the USA.I personally know 5 families where some of their members are being treated. The danger is that it is widely undiagnosed and can cause severe damage to internal organs eg liver if left untreated. The treatment mainly consists of taking blood from the affected person on a regular basis to reduce their Iron/ferratin levels. I think everyone should be aware of the danger of untreated haemachromatosis

[mjames1 in reply to patleit]

You probably should have addressed that to "Bob" who said haemachromatosis is rare, but I take my own share of responsibility for repeating it. However, before I repeated it, I did check at least one reference which said it was "rare" but based on your answer, other sites suggest it's not that rare. In any event, this thread is about low ferritin, not high ferritin, but thanks for the input.

Jim

[MoyB]

My Ferritin level is currently low so have been put on iron tablets. No obvious reason for it so am due to see a nutritionist for help and advice, all arranged through my GP. Since blood test results have been added to Patients Know Best, I have found it extremely interesting. I wonder now if a lot of my arrhythmia may have been due to anaemia and low ferritin in the past as this is not the first time I've had to go on iron. I had not made the connection with blood thinners. xx Moy

[Carew]

My ferritin the other day was almost 400 - itself a drop from almost 500 a few weeks ago.

But those high results are being put down to inflammation rather than truly high iron. And that is an important issue.

My point is that ferritin is what they grandly call an "acute phase reactant" - meaning it goes up with inflammation/infection. Sometimes quite substantially. Thus it is inadequate on its own as an indicator of iron levels - except when low or very high. You could have low iron with ferritin rising due to inflammation and ending up within the range.

In the UK - we usually perpetuate confusion by calling a CBC a Full Blood Count (FBC).

[JOY2THEWORLD49 in reply to Carew]

HiMay be that's why after all the inflammation was removed (JOHNSON & JOHNSON MESH in TVT KIT) I got some energy back!

Food for thought.

Blood is found in my urine sometimes.

I will get a test of iron. My Blood Count can be higher and lower of normal.

cheers JOY 73. (NZ)

[jlmnlm]

Great advice! Thanks.

[betsea]

Thanks for sharing.

[JOY2THEWORLD49]

Hi JimInteresting!

And I read RADCLIFFE'S latest that ACs should be kept to minimum.

Therefore this forum is projecting ACs used ONLY WHILST IN AF.

I thought about that but thought 'how do they know that AF is coming"?

I warn "dont be late because I had undiagnosed AF". But my stroke was later 4 days connected to Thyroid Cancer. Problems of thyroid problems is AF.

It is great to hear the latest thinking all this.

PRADAXA has a lower dose of 110mg x twice day . I demanded to be reduced from 150mg to 120mg which shows on my first discharge paper from the Northland Hospital. On day 4 I was transferred closer to home Kaitaia Hospital who changed it to 150mg twice a day.

I chose PRADAXA twice a day because there is an antidote and each pill covers a 12 hour period.

The ABOVE IS VERY IMPORTANT.

I will have a special blood test. Thanx.

JOY. 73. (NZ)

[BobsBeat]

I know this was pointed out in an earlier post, but my situation is the opposite. My Ferritin was found to be quite high when getting a full cardiac workup done. My iron levels were normal however. I did get checked and found to have hemochromatosis (low level variant H63) but not the high level concerning C282 variant. I am of Celtic heritage.

My hemochromatosis should never be a major concern with iron overload but needs to be checked regularly. The high Ferritin is being treated via regular phlebotomy. My hemoglobin and hematocrit are always on the upper end of normal, so no anemia. I am on Eliquis for AFib but that's a separate issue in my particular case.