Low ferritin levels - How low is low?

[Lottie93]

Hello,
Ive had Crohn's for around 1 and half years now. I've always been anaemic with low iron levels, my Hb levels never go beyond 10.5. Recently however my ferritin levels have dropped to 8.

I have accepted that with crohns i will always have a constant level of tiredness but over the past months my fatigue is at the worse its been, my entire body aches, i have horrible black rings around my eyes, to do anything is a struggle and my exercise tolerance is practically zero (i used to be very sporty and run lots but recently i barely run 100m without feeling exhausted). I am at university studying a pretty intense course and i am struggling to concentrate with this level of tiredness.

I just really wanted to know if a ferritin level of 8 is something that i should be concerned about? Is this low in regards to Crohn's disease?

I think it is this that could be causing my symptoms and I'm wondering what else could be done to get my levels up. Do people have infusions at this level? my consultant briefly mentioned it in the past but this was when my iron wasn't this low.

Iron supplements don't get absorbed, I've been on them for years but doctor decided to stop as my iron levels still dropped. I still try to eat iron rich foods that i can tolerate.
I have low vitamin B12 as well and have injections for that.

Any help would be greatly appreciated, i am quite fed up of feeling like this.
Thanks

 

[Catherine]

Hi

A ferritin level of 8 is pretty low. You really need to know the range the lab is using as eachlab has it own range.

Do you have you levels for iron and transferrin? Eg any other iron numbers

My personal opinion is the supplements were working to some degree as this would explain the drop when they were ceased.

I believe you need to discuss with your doctor a treatment plan for your anaemia. Also you may want to discuss how good of control your Crohn's is under.

My daughter is almost two year post dx and her hemoglobin is now is normal range.

 

[shamrock15]

There is an iron supplement called proferrin that is available in Canada that is derived from ox blood, so it is actually well absorbed (assuming your bowels are intact). You may have occult bleeding - that was the bane of my existence for 3 years. For me, it appears lack of sleep and the pH of my bowels may have combined to create the issue. If you are up late studying for your courses, see if you can reasonably turn in earlier. It seems a little counter-intuitive, but it just may pay off. Try to keep your diet a little acidic too, as this is a requirement for good iron absorption. As Catherine mentioned, please follow up with your doc on this. Some of these little things may not normally be mentioned by most doctors, but there was no other real reason for my iron absorption and anemia to stop suddenly as there were no changes in meds. Only a change to a more regular sleep pattern and the addition of slightly acidic fluids (lemonade!) happened at that time.

 

[Lottie93]

Thanks for the responses.
Catherine - I don't have any other iron level in the blood test results that i can see, is that done as a special test?
I assumed they would have tested the levels of all the iron levels if investigating my iron but all i have is ferritin.

My Crohn's much to my frustration is not being that well controlled at the moment.
I really just wanted to know if i should be pushing for more help in regards to the ferritin levels cos i sometimes feel my consultant dismisses the fact i am so fatigued because thats what its like to have crohn's.

Shamrock15- I do have fissures which only came about a few months back and they bleed daily (not a significant amount), my doctor said it wasn't anything to worry about thou. I do try to sleep as much as i can, it is hard with my course and i find that i nap so much throughout the day it can make it hard to fall asleep but I'm on my holidays now so all i seem to do is sleep in the day haha i will look into the proferrin thanks!

 

[Catherine]

Lottie93, am in Australia and we get 4 numbers when iron studies are done. I believe you need to push for more help getting your ferritin levels up.

Iron, folate and B12 all can affect your haemoglobin levels.

You should not have to accept fatigue as a side effect of Crohn's.

 

[Livilou]

Hello! My 18 year old daughter had a ferritin level of 7 back in August 2013...she is also a college student and at the time was suffering severe fatigue as well. Her MD wanted her to start Ferrous Sulfate supplementation, 2 tabs/day. Liv had been toloerating 1 tab/day, but when increased to 2, she was having some gastric upset. I researched on line and found a product called Ferrochel by Designs for Health. It is a form of chelated iron...Ferrous Bisglycinate..that is tolerated better and more easily absorbed by people with Crohns, Celiacs, ect....Liv takes one tab/day with 500mg of Vit C...helps with absorption as well; she will usually take pill with a glass of orange juice when available. We just had labs done last week and were thrilled with her Ferritin result increasing to 12...still low, but within normal range with our labs' parameters. It takes time to increase Ferritin levels, be patient...bottle says you can take 2 tabs/day until ferritin starts to come up. Liv makes sure that she takes the supplement hours from any other meds...many meds and supplements interfere with iron absorption! Good Luck to you and feel better!!!! Kim

 

[Lottie93]

I can't get hold of my IBD nurse and my GP says that despite my iron being low my Hb isn't low enough to warrent an infusion.
I don't understand how else I can get my iron levels up? Since my iron dropped 4 units despite being on 2 a day supplements over the past year and a bit (I only stopped months ago when my cons said it obvs wasn't helping) I also eat a high iron diet to the best I can tolerate
What else can I do,? I'm at my wits end with this fatigue yet can seem to get no help Xx

 

[Lottie93]

Livilou- I will also look into these iron supplements! I have tried something called ferroglobim but haven't tried much else .
Thank you all for the suggestions
Xx

 

[littlemissh]

Low ferritin can cause fatigue despite normal Hb levels. My last level in December was <5, though my Hb was 6.1 (61)

Here is a summary of a study showing this.

<<Iron supplementation for unexplained fatigue in non-anaemic women: double blind randomised placebo controlled trial
BMJ 2003; 326 doi: http://dx.doi.org/10.1136/bmj.326.7399.1124 (Published 22 May 2003)
Cite this as: BMJ 2003;326:1124
Article

F Verdon, general practitioner1, B Burnand, senior lecturer2, C-L Fallab Stubi, pharmacist3, C Bonard, general practitioner1, M Graff, general practitioner1, A Michaud, general practitioner1, T Bischoff, general practitioner1, M de Vevey, general practitioner1, J-P Studer, general practitioner1, L Herzig, general practitioner1, C Chapuis, general practitioner1, J Tissot, general practitioner1, A Pécoud, professor3, B Favrat, consultant of internal medicine3 ([email protected])
Author Affiliations

Correspondence to: B Favrat
Accepted 20 March 2003
Abstract
Objective To determine the subjective response to iron therapy in non-anaemic women with unexplained fatigue.

Design Double blind randomised placebo controlled trial.

Setting Academic primary care centre and eight general practices in western Switzerland.

Participants 144 women aged 18 to 55, assigned to either oral ferrous sulphate (80 mg/day of elemental iron daily; n=75) or placebo (n=69) for four weeks.

Main outcome measures Level of fatigue, measured by a 10 point visual analogue scale.

Results 136 (94%) women completed the study. Most had a low serum ferritin concentration; ≤ 20 μg/l in 69 (51%) women. Mean age, haemoglobin concentration, serum ferritin concentration, level of fatigue, depression, and anxiety were similar in both groups at baseline. Both groups were also similar for compliance and dropout rates. The level of fatigue after one month decreased by −1.82/6.37 points (29%) in the iron group compared with −0.85/6.46 points (13%) in the placebo group (difference 0.95 points, 95% confidence interval 0.32 to 1.62; P=0.004). Subgroups analysis showed that only women with ferritin concentrations ≤ 50 μg/l improved with oral supplementation.

Conclusion Non-anaemic women with unexplained fatigue may benefit from iron supplementation. The effect may be restricted to women with low or borderline serum ferritin concentrations.>>


If oral iron is not increasing your ferritin levels, iron infusions would not be unreasonable. It would be your gastro consultant or ibd nurse who would arrange this

 

[CDJ]

My son had a ferritin level of 16 which I was told was very low, so yours being 8 is extremly low. My son now takes 300mg ferrous gluconate twice a day.

It does seem to be a common thing in the UK not to be told what your blood levels are [ or anything else they test for ]. We don't tend to know from one appointment to another. If I request details of blood tests I get a one off information sheet.

 

[Lottie93]

Thanks for all the advice everyone. My nurse finally called me today and i have been referred for an iron infusion! Not sure how long it will be till i get it but nice to have that motion in action!

CDJ- I have also noticed that, unless i bring it up my blood tests never seemed to get checked by my consultant. Its frustrating that we have to wait till the next appointment to know the results.
My vitamin B12 levels dropped really really low and my nurse didn't understand why i hadn't been started on injections when it was because no one had bothered to check and tell me of my results.
I get all my blood work sent to my GP now as they always check

 

[CDJ]

Lottie, it's good to hear that you are being referred for an iron infusion. Hopefully you won't have to wait too long and it gets your iron levels up.

I will ask at my son's next appointment for the results to be sent to our GP. I think that they will be more on the ball than the clinic

 

[Chester31]

My son also struggles with his ferritin levels. When his ferritin level was 8 back in the summer he had a series of 4 iron infusions over a month. This resulted in a huge improvement in his ferritin level and in his general well being but it wasn't to last. He now takes iron supplements - 210mg ferrous fumarate daily.
Are you able to get blood results from your IBD nurse? That's how we find out what's going on!

 

[CDJ]

I can get results from the IBD nurse, but they are few and far between, and only ever if I ask for them. It isn't done as a matter of course. I did request that after each blood test we got the results, but again i have to ask each time, it just isn't being done regually. I have great problems getting hold of Josh's IBD nurse anyway. When Josh was having major problems with a flare up last year, they were pretty much worse than useless. I did ask at the time if my child wasn't ill enough for them to help!

 

[littlemissh]

Good news about your iron infusion Lottie.
I too get my results from my GP, he rings me on the evening he gets them back. He does this whether they need acting on or not because he said he felt like he only ever rang me with bad news.
My consultant only checks his results sporadically it seems. My Hb was 5.2 once and so my GP rang immediately and arranged a blood transfusion through my gastro consultant. 2 weeks later my gastro checked his results and rang in a panic thinking it was a new result!
Thank heaven for GP's…but then I am biased.

I am very lucky to have great IBD nurses as well. Yours sounds a bit rubbish Josh's mum.

 

[Lottie93]

My IBD nurse is really good at getting me results for urgent tests that she has ordered for me herself but not for tests that my consultant orders, so if anything is picked up on my routine bloods then i won't know unless i call up and ask them to check or until i see my consultant again.
I do try and get in contact with her regarding them but for the last few months she has been so hard to get hold of as she was ill then on holiday and she only works part time. But my IBD nurse is usually very good when she is around haha!

It does worry my mother a lot as she wants to feel secure in the idea that if something bad comes up in the tests that needed sorting we would be contacted but she doesn't believe that they would check the results, because in the past they haven't.

 

[4peace]

My Ferratin level was a "1" about 1 1/2 months ago. I did 3 iron infusions and am still waiting for word back from my recent labs as to how much the infusions helped. I'm guessing not too much since my energy is very low still, am irritable and nearly passed out the other night.
My question is how long do these iron infusions work? Hope your feeling better!

 

[OldCrone]

I'm new to this forum but am wondering if other people have heard or read about the idea that those of us with inflammatory illnesses may have issues with iron even when our lab results are normal. My husband attended a talk by an OHSU researcher who suggested that people with inflammatory diseases are often iron deficient even when the lab results look normal. I'm not the best one to explain this, but as I understand the theory, our inflammatory processes can affect lab values and a normal lab value of ferritin does not mean we have enough iron stores. I am not allowed to link to the pdf of the article my husband found for me to print out and take to my doctor to ask if iron shots might be useful for me, but you might be able to find it with the search terms: (© 2012 Hellenic Society of Gastroenterology Management of iron deficiency anemia in inflammatory bowel disease – a practical approach Jürgen Stein a,c, Axel U. Dignass b,c Krankenhaus Sachsenhausen; Markus Krankenhaus; Crohn Colitis Clinical Research Centre Rhein-Main, Frankfurt am Main, Germany Annals of Gastroenterology (2012) 26, 1-10 a Krankenhaus Sachsenhausen (Jürgen Stein); b Markus-Krankenhaus (Axel U. Dignass);c Crohn Colitis Clinical Research Centre Rhein- Main (Jürgen Stein, Axel U. Dignass), Frankfurt am Main, Germany Conflict of Interest: J. Stein: Speaker Advisory board member for Vifor international and Vifor germany and Pharmacosmos. A. Dignass: Speaker for Vifor international and Vifor germany
Correspondence to: Jürgen Stein, MD, PhD, FEBGH, FEBGH, Crohn Colitis Center Rhein Main, Norendstrasse 50, D-60318 Frankfurt, Germany, Tel.: +49 69 79392119/2219; Fax: +49 69 7939266, e-mail:

I will post a relevant paragraph:

However, because both ferritin and transferrin belong to the family of acute- phase proteins, these reference ranges cannot be applied to patients with active IBD [4,12]. Recent guidelines therefore recommend that, in the presence of inflammation (i.e. CRP >5), sensitivity and specificity can be improved by using a cutoff value ≤ 100 μg/L [12].

 

[JenS]

My iron and ferritin levels have been low for TWO years. I got iron back to normal but ferritin still at a FOUR!!