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Sjogrens Topics => Living With Sjogren's => Topic started by: Deb 27 on August 05, 2018, 08:13:36 AM

Title: Low iron or ferritin
Post by: Deb 27 on August 05, 2018, 08:13:36 AM
So, does anyone else have low iron or ferreting but have a normal hemoglobin number? Can this make you tired? My hemoglobin and hematocrit are normal.  I have read that low iron/ferritin can give you restless legs and sometimes I have that.
Title: Re: Low iron or ferritin
Post by: cccourt1942 on August 05, 2018, 01:44:50 PM
I haven't a clue what hemoglobin is much less the normal number.  I could look back at reams of tests, but am recovering from surgery...and just can't go thru all that stuff.  I am replying because before this present sgy, I was delayed because I had "zero" iron.  That result found me with the gastro > EGD > Ulcer > Rxes, AND Slow FE.  Whew:  it's the Slow FE I was getting to.  This depletion slipped up on me when I was having all this hip pain, and after 2 MRIs (both hips)  I was going to various physicians for clearance for the hip replacement.  I'd had an ulcer 25 years before---and this was out of the blue.  The one thing physicians told me is I should feel badly.  I didn't.  No restless legs, nothing.  Just sayin'....don't know how long a person goes before discovering iron depletion--or if hip pain overrides restless leg syndrome.  The "tired" I was really from discomfort.  I kept moving...I kept doing things.  My activities were more limited ...and shorter in duration.  I did take three trips that I think of it...within about 7 months prior to the discovery.  I'd never had anything like this happen.  It delayed my surgery about three months, to close, etc.  Good luck...and hope someone comes along who knows what your concerns mean. 
Title: Re: Low iron or ferritin
Post by: Carolina on August 05, 2018, 01:46:37 PM
Dear Deb 27,

I began having low ferritin in 2007.  Repeated attempts to 'fix' the problem (which made me exhausted) by taking Iron tablets, stopping when the ferritin was normal, and then restarting because the ferritin dropped again, failed.

I have taken two tablets daily of Iron since 2008.  My ferritin is normal, so clearly I need the extra Iron. 

The Iron tablets are 325 mg ferrous sulfate.

Some people with chronic iron issues have to have iron infusions of some sort.

NO reason for my iron deficiency has been determined.  I assume it is related to my Immune Disorder, like so many of my 'conditions'.

Fortunately this easy to correct, and very inexpensive, as well.

Keep us posted,

Title: Re: Low iron or ferritin
Post by: irish on August 05, 2018, 10:50:51 PM
I have low ferritin levels all the time even when my hemoglobin is normal. However, my hemoglobin is not normal very often. Last week it was 10.0 and I am not as fatigued as I have previously been.

I am seeing endocrinologist this week to check on my thyroid and other things as I have felt so bad lately. I have done a lot of research lately and discovered that Hashimotos often has anemia as a symptom. I had never been told this. Should be interesting appt. I will probably see him for my diabetes and long term steroid use also. Hope I like him. He is young so should be up on latest things.

Also, I have not been able to keep my hemoglobin up with oral iron so last March I had iron infusions and it lasted about 8 months or so. Then in this April I had a different type of iron product infused and this type only lasted about 4 months. So much for us to keep track wonder between my internist and me we forgot about my Reclast infusion this past fall.!!! Good luck all. Irish
Title: Re: Low iron or ferritin
Post by: eija on August 06, 2018, 05:01:28 AM

Oh wow Debs, you just didn't ask this when I happened to pop in the site!

First, remember, I'm from Finland and writing what's happening here. I have no idea how things are done in other parts of the world (well I do have some idea, but not really that much). Also, I, like most of the people on this site, am not a health care professional in any way. I've just been doing a lot of reading about this issue lately, from various sources.

(Also, I'm in the process of lowering my Cymbalta dose and slept very badly, so my brain resembles something rotten potato mush better than anything else.)

The simple answers to your three questions are: Yes, yes and yes.

In Finland there's a kind of a ferritin war going on between doctors and patients who are finding out themselves what's wrong with them, since they get no help from health care. Health care professionals seem to (mostly) be clueless of what ferritin even is but especially what levels are preferable and why. Like in so many other things, they just look at the given "normal range" or the cut-off numbers.  They are created like based on lottery, by taking some random group of people (without knowing if they're healthy or not - even in this respect), testing their ferritin, then calculating the upper and lower limits so, that 95% of the group fits inside the range. The thing is, that iron deficiency is SO common in population, that probably a huge part of this random group is also iron deficient, and much more than 5% of them. Rather like 20 or 30 % or even more.

From Wikipedia (it's not a reliable source but this was properly written): "Ferritin is a universal intracellular protein that stores iron and releases it in a controlled fashion. The protein is produced by almost all living organisms, including algae, bacteria, higher plants, and animals. In humans, it acts as a buffer against iron deficiency and iron overload. Ferritin is found in most tissues as a cytosolic protein, but small amounts are secreted into the serum where it functions as an iron carrier. Plasma ferritin is also an indirect marker of the total amount of iron stored in the body, hence serum ferritin is used as a diagnostic test for iron-deficiency anemia." (My note: I'm talking here about iron deficiency without anemia)

(continues in the next message, because this was too long)
Title: Re: Low iron or ferritin
Post by: eija on August 06, 2018, 05:02:19 AM

Ferritin is often the first thing in blood to react to iron deficiency (ID). It's also the most reliable value to test, even though it has some issues too. However, if serum (or plasma) ferritin is low, the result is always reliable. If it seems high, that's a different story. One thing that can cause a falsely high ferritin is a simple thing called inflammation. It can be an active one or a silent one. So ferritin should always be measured with crp or sed-rate, but even if those are ok, the "good" level of ferritin may be a lie.

Hemoglobin (Hg) may be falsely high for various reasons: Asthma, for one, because oxygen deprivation causes Hg to rise falsely. Also if you're dehydrated, Hg may seem a lot of higher than it actually is. And then, surprice - ID! That's because ID causes oxygen deprivation to the body, so the Hg may actually rise before starting to plummet because of full blown anemia.

Symptoms from low ferritin may be various, difficult and debilitating: Fatique, headaches, restless legs, tinnitus, skin problems, stomach problems, heart problems, muscle problems, pale skin and black under eyes...... the list is endless. And actually, ID without anemia is VERY often confused with hypothyroid issues, especially the sub-clinical ones. So before starting trial medication for hypothyroid, the pati ents ferritin levels should always be taken care of first.

Also, an important note: When finding ID, the reason should always be determined. Without finding out (and treating!) the root cause, pumping iron in the system is like pouring water in a bucket with holes in it. That's just stupid. Plus, sometimes the causes  may be malignant.

With Sjögrens patients, the risk for ID (and vitamin B deficiency, too) is clearly elevated. That's because the nutrition absorption is compromised for various reasons.

What then is a good level of ferritin? WHO states that values under 12 means no iron in the system at all. Zero. But that's rather low, too, and depending on the source, values under 20 or 30 are considered serious ID and anything under 40 is ID. For adult women I've generally read that 100 is good, but depending on the person, some may need even higher values.

With restless legs some sources recommend ferritin at least 45 (which is LOW imho), others 70 or more.

With rheumatic diseases or chronic illnesses the level should be at least 100, considering the possibility of inflammation causing false readings.

Correcting low ferritin helps the thyroid function better, because iron is needed in the T4 -> T3 conversion process. So minor thyroid problems MAY be corrected with iron only. When looking into iron levels, also active B12 and vitamin D should be checked and corrected into proper level, because the balance is important. And those two vitamins are so very important for people in so many ways.

As an end-note (although I drafetd this text rather quickly and put it in short and I'm sure I'll soon remember loads of things I should've included in it), taking iron just by yourself can be dangerous, even lethal. So it's important to find a good doctor who knows what he's doing and why, and keeps monitoring your progress. Correcting very low ferritin levels can sometimes take a very long time, even two years. It cannot be achieved by correcting your diet - there's no way you can get so much excess iron from food. You need iron pills, or, if you can't use those or they don't help, then infusions.

The professionals on this forum, Irish, Linda and others, please correct if there are any mistakes in my text.
Title: Re: Low iron or ferritin
Post by: cccourt1942 on August 06, 2018, 04:37:41 PM
    You have explained to me what two doctors couldn't...or didn't want to take the time to explain.  When my iron situation occurred, I was in the midst of another physical situation---and the iron (or ferritin) depletion was an aggravation with which I didn't want to deal.  Because the other has just been finalized (not fully  resolved, or recovered from) but definitely fully addressed---I look at all these entries and realize:  A) the absence of iron on "a" test, B) discovery of an ulcer---from which two doctors SWORE I had to be passing blood (I hadn't) and C) a simple OTC ferrous sulfate daily dosage (I think that's what Slow FE is) and realize variants on these blood tests are more important to each of us than I've treated them.  Main reason I ignore them is everything is always with normal limits----except for all those Sjogren's markers!!  No wonder that diagnostic rheumatologist was as surprised as I was that I had an autoimmune disease!  Thx.  I always enjoy reading your posts...this was truly enlightening!  I also understand more completely when many become concerned about certain levels on certain tests.  THX, THX
Title: Re: Low iron or ferritin
Post by: ellieas on August 07, 2018, 05:30:30 PM
My hemoglobin has been normal and my ferritin low. i was in the hospital for my lung issues so they gave me 3 IV treatments of iron. My hemoglobin and ferritin are now. normal. I have been taking oral iron but it is bothering my hiatal hernia. The hematologist said that I can stop the oral iron and we will recheck it in3 months-just another aggravation!
Title: Re: Low iron or ferritin
Post by: Deb 27 on August 08, 2018, 08:14:34 AM
Are the iron infusions painful??? I wonder if my doc will order them b/c my ferritin was 9. I have restless legs and I am shedding a bit. I didn't find out my ferritin was low  until the rheumy started  measuring it. They never told me it was low but I saw it in my EHR. It's amazing what you can find in your lab results and EHR that the docs never seem to mention.  I have also found some errors, which my Gyn quickly corrected.

I am up for an iron infusion if it's not too painful...... Iron is tough on the stomach and I already have GERD.

Thank you for that wonderful explanation of ferritin and iron eija!!!  Good to hear from you.
Title: Re: Low iron or ferritin
Post by: SjoGirl on August 08, 2018, 12:26:08 PM

Also, an important note: When finding ID, the reason should always be determined. Without finding out (and treating!) the root cause, pumping iron in the system is like pouring water in a bucket with holes in it. That's just stupid. Plus, sometimes the causes  may be malignant.

The above is so true. I have been anemic for years, particularly so prior to getting my SjS and RA under control. My RBC is still low, probably mostly due to meds, but also it's just low.

When I was first ill docs told me to take iron, I did to no avail. I eventually had a bone marrow biopsy and learned that I had zero storage iron. Why, the doc didn't know. I learned from another hematologist that my anemia is from my autoimmune diseases. What does that mean? I could take iron supplements until the cows come home, it would not help. My body destroyed RBCs as fast as it was making them, actually faster.

Interesting that there is a connection between thyroid and all of this, my thyroid has been low and I know it when it is. My Free T4 has been fine so docs just keep an eye on it.
Title: Re: Low iron or ferritin
Post by: Carolina on August 08, 2018, 05:35:21 PM
Dear SjoGirl:

It's so good that your doctors could find a cause for your anemia.  Countless tests found no reason for my anemia, other than that I didn't store the iron I took and just had to keep taking it.

My thyroid is fine, and all my 'numbers' are also fine (the T4 stuff, etc.)

And I don't even have true autoimmune conditions.  My immune disorder is of a different type, with my immune system using Cytokines to attack my body.  I guess that has an effect on my iron stores, as well. 

Who knows.  I just take the Iron tablets and carry on.

Regards,  Elaine
Title: Re: Low iron or ferritin
Post by: Deb 27 on August 09, 2018, 08:06:47 AM
I guess they have to look at reasons why your iron might be low.  One doc did a stool test for blood and that was negative. I guess some don't get too worried until your hemoglobin actually gets low and you are clinically anemic. So far, my hemoglobin has been good, it's just the iron stores. Sounds pretty common with auto immune diseases.