Ferritin???

[lisajean]

Hi All,
Just got back from Mayo (took my 18 year old daughter there to confirm diagnosis of Autonomic Dysfunction) and in the process it was discovered that her ferritin was extremely low but iron count was ok. They gave her an IV of Iron Sucrose and want her to have two more IV's ASAP. The assumption was malabsorption but she only tested blood positive for CD 10 months ago. Blood and biopsy done 2 years ago showed no sign of CD.
Anyway, long story but my question is.....
1. any one with low ferritin helped by IV iron?
2. is this really a malabsorption issue?
3. what are the signs of ferritin deficiency?

Finally, ferritin is not routinely checked and it makes me wonder what else we might be missing. I plan on having my levels checked thats for sure. My daughters Mayo docs feel that low ferritin is a real contributing factor to many of her symptoms.... which pisses me off because it is a simple test and why did we have to go all the way to the Mayo Clinic, but on the other hand I am so grateful that they took it so seriously and while it is just one piece of my daughters health concerns it is being addressed.
Wow, that was a major run-on sentence. Sorry to any grammer fanatics...lol.
Any way, still trying to learn and heal. Love and hugs,
Lisa

[jcc]

I'm glad they found something that they feel might help her.

You know... the whole ferritin thing... My daughter and I run low normal, but not not below range... like 23-24. I keep hearing that optimal ferritin is around 70, but since no doctor seems to think 20 is bad... ho hum.

I have heard that ferritin is really what they should be more concerned with as it shows your iron stores.

Judy knows alot more about this than I, and perhaps others do as well. I hope they will post. It really is frustrating not to have our old threads. I think you would have found some good information.

Here us labtestsonline on ferritin:
http://www.labtestsonline.org/understanding/analytes/ferritin/faq.html

This might be interesting...there are links to the references at the bottom.
http://www.clinicalanswers.nhs.uk/index.cfm?question=326

You know, it would upset me too! Why aren't our doctors trained to look at nutritional status first, especially in someone who has GI symptoms / malabsorption/ celiac disease! And why don't they look for optimal levels...and not accept bare bones minimum levels as healthy in someone who is symptomatic. You shouldn't have to go all the way to Mayo to find relatively simple things. I bet they get frustrated, too, and I've also heard sometimes even they miss 'simple' things.

Cara

[JudyLV]

My 15 year old daughter was found to be anemic in June. At that time her ferritin was 5. However she also had low serum iron, iron saturation, hemoglobin and a few other things. After taking iron supplements for a couple of months her ferritin only rose to 11. The pediatrician considered this to be fine since it was "in range". He felt that teenage girls are frequently anemic because they do not eat well and have heavy periods. My daughter has been on a GF diet for a couple of years and so most of the food she eats is very healthy and she does not have a regular period. I questioned the low ferritin and so he checked urine and stool samples for blood loss. She was found to be losing blood in her stool. We are now working with her GI doctor to address this. We are rechecking this week and most likely will be scoping her next month. I feel if the pediatrician had checked for a source of blood loss initially my daughter would be 2 months closer to getting better. She is able to go to school and play sports but has no extra energy. Here is a good article about management of anemia
http://www.aafp.org/afp/990315ap/1598.html
They state that "Adequate iron replacement has typically occurred when the serum ferritin level reaches 50 ug/L (8.9 umol per L)." Note that the lab reports ferritin with the units ng/mL but that ng/mL are equivalent to ug/L.

Did your daughter feel an improvement after having the IV iron?

--Judy

[OZZ]

Hi Lisa,

The ferritin level is how my daughter was diagnosed with Celiac Disease. She had been running a low ferritin and high TIBC. She I believe was born with Celiac Disease since I had intrauterine Growth Retarded diagnosis while pregnant with her. She was the typical Celiac Baby and toddler. When I started the GF diet she of course didn't have much of a choice so she and hubby were mostly gluten free. Even before the diet she was choosing to take her lunch to school and eat breadless roasted turkey and fruit.

By the time I tested her her numbers were in the mid and low range for Celiac.

AGA IgG 4 (I did receive an old test stating she was IgG deficient and was never told)
AGA IgA 6 (I just realized she was never given the Total IgA...Hmmm)
tTG 11 out of 20

She is DQ2 and DQ1
Her ferritin was always very low normal with a high TIBC
Her RBC was always high so no one ever cared about low ferritin and high TIBC

She did a challange and did exactly what the info below states.
Test-----Range------3monthGF-----3 month challange------before challange
TIBC 222-400----------------------H527---------------424
IRON 50-212-----------149-----------L22------------------77
Saturati 16-35------------37----------vL4------------------Not done
Ferritin 10-291-----------NL23--------vL5------------------21

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7055099&dopt=Abstract


Am J Clin Pathol. 1982 Jan;77(1):82-6.
Related Articles, Links


Serum ferritin levels in celiac disease.

Souroujon M, Ashkenazi A, Lupo M, Levin S, Hegesh E.

Of the various common assayed parameters of iron metabolism, serum ferritin levels are the most discriminatory in distinguishing between non-treated celiac disease and other gastrointestinal disorders in the pediatric age group. Patients on normal diets usually have very low ferritin levels that increase at an average rate of 1 microgram/1/month when placed on a gluten-free diet. When the patient returns to a normal diet, however, ferritin levels decrease rapidly at an average rate of about 4 microgram/1/month. There is a relationship between abnormal intestinal changes and low ferritin levels in celiac disease with improvement in both when the patient is on a gluten-free diet. It is suggested that serial blood ferritin evaluations together with the leukocyte migration inhibition factor production assay should eliminate the need for invasive intestinal biopsies for the confirmation and possible follow-up to response to treatment.
PMID: 7055099 [PubMed - indexed for MEDLINE]



http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14719782&dopt=Abstract

Indian J Pediatr. 2003 Dec;70(12):955-8.
Related Articles, Links


Iron supplementation in children with celiac disease.

Kapur G, Patwari AK, Narayan S, Anand VK.

Division of Pediatric Gastroenterology and Nutrition, Department of Pediatrics, Kalawati Saran Children's Hospital, New Delhi. gudu@ndf.vsnl.net.in

OBJECTIVE: To evaluate the effect of iron supplementation, in addition to gluten free diet (GFD), on hematological profile of children with Celiac Disease (CD). METHODS: Children diagnosed as CD as per modified ESPGAN criteria were prospectively evaluated for their hematological profile at the time of their enrolment and after consuming GFD for at least one year. The results were compared with age and sex matched controls. Evaluation of hematological profile included hemoglobin estimation, complete blood counts, peripheral blood smear examination, serum iron, total iron binding capacity (TIBC), and serum ferritin estimation. All the enrolled cases were given iron supplementation in addition to exclusion of gluten from their diet. Repeat intestinal biopsy was performed in all the cases after completing 1 year on GFD. RESULTS: Twenty one children (mean age 6.67 years, range 4-11 years) diagnosed as CD who completed at least one year of regular follow up on GFD (mean 1.5 years, range 1-2 years) were analysed for their hematological profile at the time of enrolment and after consuming GFD and iron supplementation. At the time of enrolment all the children had hemoglobin level <11 gm%, 78% had microcytic hypochromic anemia and 22% had dimorphic anemia, with lower mean MCV, MCH and serum ferritin levels, and a significantly higher mean TIBC as compared to controls (p<0.001). In the follow up evaluation of these cases on GFD, mean hemoglobin levels were comparable with controls but the cases continued to have lower mean MCV, MCH serum ferritin levels (p<0.05) and higher mean TIBC (p<0.05). Seven children had mild anemia. Serum ferritin levels showed a negative correlation with the grade of villous atrophy and lamina propria infiltrate. CONCLUSION: Our results suggest that iron deficiency anemia (IDA) is commonly associated with CD and iron deficiency state continues for a longer time even after excluding gluten from the diet and iron supplementation. Apart from offering them GFD rich in iron, early detection and treatment of IDA and prophylactic iron folic acid supplementation will go a long way to optimize their mental and psychomotor functions.

Publication Types:
• Clinical Trial

PMID: 14719782 [PubMed - indexed for MEDLINE]

American Journal of Clinical Nutrition, Vol 67, 482-487, Copyright © 1998 by The American Society for Clinical Nutrition, Inc
________________________________________
ORIGINAL RESEARCH COMMUNICATIONS
Nutritional status of newly diagnosed celiac disease patients before and after the institution of a celiac disease diet--association with the grade of mucosal villous atrophy
TA Kemppainen, VM Kosma, EK Janatuinen, RJ Julkunen, PH Pikkarainen and MI Uusitupa
Department of Clinical Nutrition, University of Kuopio, Finland.
No systematic studies have been carried out on the association of nutritional status with the severity of mucosal villous atrophy in newly diagnosed celiac disease patients. We examined the nutritional status of 40 adult patients with newly diagnosed celiac disease classified according to the grade of villous atrophy: partial, subtotal, and total. Nutritional status was determined by food records as well as by anthropometric and biochemical measurements. Anthropometric results did not differ among the three atrophy groups, but serum ferritin and erythrocyte folate were lower in patients with total villous atrophy than in the other groups. Most of the abnormal biochemical values were normalized during 1 y of a gluten-free diet; villous atrophy healed concomitantly. To conclude, patients with total mucosal villous atrophy at diagnosis had low erythrocyte folate and serum ferritin values, but no other major differences were found in nutritional status among celiac disease patients with different grades of villous atrophy.

When we went to Dr. Fine's Conference there was a Dr. that talked quite a bit about the significance of low ferritin. Even though the first article is an old one, I think there is something to this information. My daughter also always had low lymphocytes even when her WBC ranged from low to high.

[OZZ]

Here is another article of Ferritin:

Ferritin and Iron Deficiency Anemia

http://www.labcorp.com/datasets/labcorp/html/chapter/mono/ri020300.htm



The serum ferritin is, other than a bone marrow examination, the most reliable indicator of total body iron stores. When combined with the serum iron and percent saturation of iron binding capacity/transferrin, it can usually differentiate the microcytic hypochromic anemias into iron deficiency anemia (ferritin low, iron low, saturation low, TIBC high, transferrin high), the anemia of chronic disease (ferritin normal or high, iron low, normal to low transferrin or TIBC), or thalassemia (ferritin normal or high). Ferritin is low with combined iron deficiency and thalassemia. In adults, serum ferritin level <=10 ng/mL indicates iron deficiency. High serum ferritin levels may be associated with inflammation, liver disease, megaloblastic anemia, hemolytic anemia, sideroblastic anemia, thalassemia, iron overload (hemochromatosis, hemosiderosis), malignant diseases including leukemia and malignant lymphoma and are described with CEA elevations in patients with breast cancer. Very high levels indicate iron overload. Oral and injected iron increase ferritin levels. Increased serum ferritin may be a risk factor in primary hepatocellular carcinoma.2

[jcc]

Gosh Linda, I had forgotten... those numbers sure took a dive on the gluten challenge :eek:.

Cara

[annelb]

Judy, glad you were persistent in finding out why the ferritin was so low. Doctors seem to assume that everything is related to menstration. I have met so many people who tell me they are anemic but they are told not to worry because of their "heavy" periods.

For years I had microscopic blood in my urine. My docotrs told me that I was probably about to start my period and that is why there was blood. When I went through menopause, the blood was still there. They finally did a bunch of tests and never did find a cause. I have not had this checked for years. I have never been anemic.

Hey Linda, that is an amazing drop in the iron tests :eek: Is she back on the GF diet now?
Anne

[NancyM]

I have the same thing, tiny bit of blood in urine. They checked my kidneys, my bladder, nothing. Then they said some people have it and they don't know why. :p

[lisajean]

Thanks for the input.
Hannahs ferritin was 13. Her Mayo doc wants it to be at least 50 and feels the best way to do this is with IV iron. He said it could take a year of oral iron to get the same results, IF she is not still malabsorbing. This doc is a Neurologist who specialises in sleep disorders. He really knew his stuff when it came to CD and vitamin defiencies as well. Very cool doc.
My daughter hasn't noticed much change yet, but it has only been 1 week since her first infusion and we were told it could take up to a month to notice anything. Hoping for miracles here but even a little boost would help so much.
hugs,
Lisa

[klasyjo]

I have the same thing, tiny bit of blood in urine. They checked my kidneys, my bladder, nothing. Then they said some people have it and they don't know why. :p

My mom has the same problem but her rbc levels also drop dangerously low. I'm taking her to a blood specialist soon to get some further information. My uncle had pernicious anemia but ended up with gan-green with his leg amputated to his hip prior to death.

Sorry not trying to scare anyone but it is a good idea to find out the cause so serious complications do not occur.

[annelb]

Becki, has your mom been tested for CD? Is she GF? Here is an article about hematological manifestations of celiac disease.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16973955&query_hl=24&itool=pubmed_docsum

I hope your mom can get answers.
Anne

[klasyjo]

Becki, has your mom been tested for CD? Is she GF? Anne

Mom's initial labs showed negative for Celiac but they only ran the most basic tests which, as we know, are NOT (sorry forgot that but looks like you knew what I meant) always correct so she's not GF and said she wouldn't do it even if she was - stubburn as a mule I tell ya but she's a nurse. She does have Addison's Disease which is directly linked to Celiac by the HLA DQ 2 gene. I'm hoping that by going w/her to this specialist and filling my head with knowledge (hopefully I can remember all of it) we can get some answers. I just don't want her to have a blood infection that would lead to the same as my great uncle - her uncle. Right now her family doc (a loon in my opinion) keeps putting her on & off iron, the iron upsets her tummy so much from the cortisone she has to have for the addison's. It's just as frustrating for all of us as it was when I was trying to dx for Celiac.

[annelb]

but she's a nurse

I know how stubborn a nurse can be - I am one ;) Nurses and doctors - they are the worst patients.

I am sorry that she will not consider going GF. I know that steroids can affect biopsies. I would think they could give you a false negative blood test too.

Coeliac disease and autoimmune Addison's disease: a clinical pitfall (http://qjmed.oxfordjournals.org/cgi/content/full/95/2/79)

I can only get the title of this one: Adult-onset celiac disease hidden by chronic steroid therapy for a skin disease. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7573104&dopt=Abstract)

Anne

[mamamakk]

I am all too familiar with IV iron and low ferritin levels. I have had persistent iron deficiency anemia for the last two years. Initially, my docs attributed it to heavy periods and uterine fibroids. I had the fibroids removed, the periods greatly improved and I was started on high dose oral iron. Low and behold, my anemia persisted and my ferritin level was 3.

My PCP called me at work when the test results came back and told me that I needed to have an EGD and colonoscopy because he felt I must be bleeding via my GI tract to have a ferritin level that low. I told him that I hadn't noticed any bleeding but I ended having the tests despite my protests.

Nothing obvious was noted and I was told to continue with my oral iron and see the hematologist. A month later, I was even more anemic and more iron deficient so they had no choice but to start IV iron. I had a 9 week course of IV iron. One dose of iron dextran and eight doses of ferrlecit (sodium ferric gluconate). My ferritin level went up to 169 and my doctors told me that my iron stores should be good for 1-2 years.

Within three months, my ferritn level was in the 30's and by the 5 month, I was already iron deficient again. I have had to re-start IV iron and I am doing it currently. So much for 1-2 years of tanking me up with iron. This was one of the many clues that led me on the CD path along with low vitamin D, B12, loose stools alternating with constipation, death cramps after eating bread products, a large weight loss, and finally positive tests results from Enterolab.

IV iron is, unfortunately, no panacea. Most people do not feel great after it and it has fairly high reaction rates. I happen to be one of the people who reacts to it. It takes a fair amount of time to infuse, it is costly and it is difficult to arrange around my work schedule. It takes a whole day away from me each week and then I have flu-like symptoms for 1-2 days following each infusion. I end up doing the infusion on a day off and then work the following two days when I feel crummy. I have to be given tylenol, benadryl, and IV steroids before each dose and often require IV benadryl and steroids during the infusion. You have to get a test dose before every infusion since you can react to any dose and at any time during the dose per my hematologist.

I then experience chest pains, hives, fast heart beat, palpitations, shortness of breath, swollen tongue, difficulty swallowing, etc for days afterward and have to pop benadryl like it is candy even when I am at work. It does bring your ferritin level up quickly but with side effects and you need to be aware of them.

Most hematologists would treat your daughter with a trial of oral iron first since she is not anemic. Most would do this even in the face of anemia. You may want to look at your options and the pros and cons of the IV iron vs. oral. If ahe does become anemic or she doesn't seem to be able to absorb iron from her diet or as a supplement, then you will have no choice.

As far as your question regarding symptoms of a low ferritin level, there are none unless you progress to iron deficiency anemia. There are a few studies out that show some women with a low ferritin level have increased fatigue and athletes can have decresed performance.

I have been on a gluten free diet since May of this year and I was really hoping that the cause of the anemia was the CD. I was very disappointed when my ferritin levels continued to fall so this has left my doctors and I looking for others causes.. Maybe I just need more time to heal. It sounds as though you have found a knowledgable doctor for your daughter and that he will be able to find the and treat the cause. Just make sure that the cause of the low ferritin level is identified and that they just not treat the low level. That is what they tried to do in my case. Good luck to both of you.

[JudyLV]

Mamamakk,
I am sorry to hear that you are still struggling with low ferritin. Just last night I was thinking I should research IV iron to see if that might be helpful for my daughter. After reading you post I will just wait for further test results. One additional test they are doing this week is the reticulocyte count to determine if the bone marrow is making enough red blood cells.
http://www.webmd.com/hw/lab_tests/hw203366.asp

--Judy

[mamamakk]

Whoops, I should have mentioned the reticulocyte count too. I have that checked each month along with all my other blood work and it is almost always high. This would indicate that my bone marrow is having to crank out new red bllod cells at a high rate to make up for the ones that are being lost. The most likely cause, I have been told, is bleeding from the GI tract.

In fact, the hematologist had me re-start the IV iron when my reticulocyte count dropped and I started making abnormal red blood cells that were lacking in iron.

Obviously, the losses could be menstrual if one happens to be a women and premenopausal but blood lossess from periods are difficult to quantify. Far too often periods or pregnancies are blamed in this patient population, when they really are not the cause of the problem. It is much easier for the doctors to be aggressive about seeking a diagnosis in men or women after menopause, that have low ferritin levels or anemia because the whole monthly cycle issue is not an issue.

In fact, there are very strong recommendations that GI doctors are to follow in trying to diagnose anmeia in these groups and it starts with the EGD/colonoscopy and goes to very invasive tests like mesenteric angiograms.

I can now say that I know much more about red blood cells and iron than I could ever have imagined I would.

[annelb]

Mamamakk - sorry that the GF diet did not help. Are you still GF? I have met two people who were getting blood transfusions for their anemia and both cleared with a change to GF. It would have been easier if you had the same result.

There are ways to look at all of the small intestine. There is capsule endoscopy and double balloon endoscopy. DBE is fairly new. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16968508&query_hl=2&itool=pubmed_docsum
Anne

[lisajean]

They (Mayo docs) wanted Hannah to have IV iron because she is so ill, in hopes of alleviating some of her symptoms. Iron is not the cause or the cure of autonomic dysfunction (AD) but because there is overlap of symptoms between AD and low ferritin levels they wanted to jump on anything they could. Hannah is basically homebound at 18 so we are pretty desperate for any help she can get.
As for the actual iron infusion Hannah tolerated it well. They premedicated her with IV Benedryl, did a test dose of Iron Sucrose (which the IV nurses said was generally the most easily tolerated) and then an hour later did the full dose. She had no side effects at all. And Hannah tends to react to almost everything!
We don't know why her ferritin is low but for now assume it is because of CD. I would imagine if she continues to have problems this will be investigated further. It just makes me so mad that her levels were low three years ago and we were told its because she has periods. I even had them test her urine and stool for blood but it came back negative. But that was before her CD diagnosis. Anyhoo, I'll keep you posted on how her next IV goes and if she has any symptom relief.
hugs,
Lisa

[mamamakk]

Hi Anne,
I am definitely still gluten free. My GI doc wanted me to do a gluten challenge and then redo my EGD/colonoscopy but I said no way!!! I could find no rational reason to reglutinize myself. I am scheduled to do the capsule endoscopy but they wanted me to do a small bowel series first because I am still having really severe bloating issues.

They were afraid to have me swallow a capsule and then have it get stuck in my small bowel along the way. I had so many GI surgeries in 2004, they were worried that there were adhesions. They did not see any obvious obstruction so I will swallow the capsule. It is like the movie, The Fantastic Voyage.

To Lisa,
I am glad that your daughter tolerated the iron well especially since it sounds as though she really is in a situation where she was needing it so badly. They have tested my stool several times for blood but it is always negative. I always have a small to moderate amount of red blood cells in my urine though and no one knows why but they said that those losses could not explain my anemia. Go figure? I hope your daughter starts to feel better soon. She is so young to be feeling so poorly. I think I am too young to feel like this but at least at her age, I felt great. I will be thinking of her. Let me know if I can be of any help.

[Hanna]

I am frantic. September, they found h-pylori, discounted cd (Enterlab HB2 and HB1) and had 6 hemoglobine.

Today after daily tablets of iron: hemaglobine 13.1, iron 12 where it was 23 last month; and ferritine 29 where it was 41 last month.

Does this mean he is getting gluten somewhere. His treatment of h-pylori did not work?????????? He still gets exhausted easily. He is also growing rapidly.