iron deficiency
 

Does anyone know anything about iron deficiency? My neuro tested blood with the CBC panel and told me I was showing mild anemia (slightly lower than normal hemoglobin and hemocrit and red blood cells) and therefore I should see my general practioner. The GP ran the CBC again and it came back normal. So she thought the first test was a fluke. However, my ferritin (iron) level was 20 and the range is 10-220. The GP still said "well, it's not 'generous' but it is still within normal range." Based on some reading I've done online some doctors think 20 is low. My hair has been falling out a lot and I have fatigue. I've always looked pale too!

Questions:
1. Should I make an appointment with the neuro again and ask her what she thinks of the ferritin levels? My GP doesn't seem concerned although she is making me give a stool sample to check for intestinal bleeding.
2. I'm worried about constipation from iron supplements as I've had chronic constipation for years from other meds. Is constipation unavoidable?
3. Does anyone know anything about IV iron? Doesn't that work a lot faster? Is it safe?

Thanks!

Hey Natalie~ Well, I could have almost written your post. My Neuro told me my ferritin level was too low, too. *around 23 I think*. So, he put me on iron supps. I was concerned, as I too, had ventured onto the internet and became alarmed, so I went to my Gastroenterologist, who immediately took me off the iron supps.

The ferritin level is the ''bank'' that hold extra iron for your body, should your iron levels go low. The supps were causing painful constipation, dark stools and IBS. *which I already had, so it made it much worse* My Gastro checked for blood in my stool, etc and all was well, so I decided to try and add iron to my diet through iron rich foods.

My Gasto told me that my Neuro should stick to what HE knows best and not alarm me. BUT, I DO think you need to make sure you are not low on iron due to other problems. A stool check, etc would definitely be a good idea. I do not take anything like that lightly, as my Father passed away from Colon CA. My PCP echoed what the Gastro said, so I guess I'll just say, that I think you should listen to your PCP.

Oh, and my Gastro told me that ferritin levels have such a wide range b/c they can change when a person's immune sx is low or depending on if you'd had a cold, etc. He said that everyone is diff, so guess that's why your PCP was also not alarmed.

Do what you feel is best for you, but my Dr told me to listen to him and not the internet. (I still go online and do searches, ha~~~ he can't tell me what to do... My DH has been trying that for years.

Take care Natalie and keep us posted. :hug: :hug: :hug: :hug:

Hi Natalie - a month after my DD #2 was born I hemorridged and ended up with a very low ferritin level - it was 2... I can't remember high much iron I was taking but I know it was a high amount to get my iron level up. (Note: this was almost 18 years ago) I was also put on a high iron level diet - Turkey is very high in Iron! Go figure!

I slept most of the time - and had no strength what so ever!!

Keep us posted and good luck! :hug:

Good on you folks to get your blood tested.

Iron deficiency is all too common. Especially for females.

Supplements are a good thing, but you definitely need to be speaking with a 'professional' when it comes to iron supplements.

Too little is bad news, but too much can be harmful.

Let us know how it goes for you hun!

*raising hand*

I do I do...I am currently under treatment for iron deficiency. Happy to tell you everything I have learned from this experience.

Mine is from heavy bleeding due to my periods although they did all the gastro tests (colonoscopy etc) to rule out GI bleeding. I guess the heavy periods are coming from that lovely perimenopause. I am guessing when I reach menopause my iron will get better on its own but for now it needs help.

I also have an absorption problem. I think iron is supposed to be a large molecule and not easily absorbed. And as we age we all absorb less nutrients. So no matter how much iron enriched food I was eating I was not absorping enough of it naturally.

I had some classic symptoms...pale, easily fatigued, racing heart upon exertion and frontal headaches, plus cold. And restless leg syndrome.

My ferritin was 23 which was borderline. Basically over time I had blown through my stores and whatever iron was going in was bascially supporting me and going out with my periods.

My endocrinologist said she wants my ferritin levels in the 50 to 60 level.

They also did the following tests with the ferritin tests.

Total iron
Iron binding capacity
% saturation
You really need the above tests in conjunction with your ferritin level otherwise you are only looking at one piece of the pie. You may have low stores but how you use iron and your saturation could be fine.

Another test that is specific to iron deficieny anemia is

Transferrin

And you should also have them test your folate and B12 because they can also show a type of anemia is too low.

So, for a while no matter what I did my ferritin was 23-25 but my saturation levels were very very low like 10%. For the most part I had blown through my stores and my continued periods led to low saturation levels which meant my blood was not carrying enough oxygen.

I tried the over the counter iron supplements but the gastro distress was terrible.

Finally I found a once a day (that is the great part) iron supplement that I take. Its called REPLIVA and its prescription and I really do not have any gastro upset from it, either diarrhea or constipation. The great thing is it is once a day and it has vitamin C in it which aids in iron absorption.

And I just got my latest test results back...giving you the current in black and the last set in red plus the ranges.

Iron 87 45 range 40-175
TIBC 312 367 range 250-450 (please note with this test the higher the number the worse the result.

% sat 28% 12% (very low was flagged) range 15-50
Ferritin 47 25 range 10-232

The above results are after 2 months on the iron treatment.

If you do pursue iron treatment do it under a doctor's care because too much iron in high levels is dangerous.

And I have to say also make sure they check your vitamin D status too, just in case.

Hope this helps.

Hello Natalie, I can not say anything from first hand but I took care of deb for a number of years, with same issues and hers, were at an extreme end, it can make you tired, big time, lucky for deb, they discovered what was wrong, See that's what they told deb too Shelley, heavy and she was, but it turned out she had pullets(Sp?) on her womanly parts, and had to have a total hyster. she didn't just have a few, her womanly parts weighed 4 times as much as they should, so by correcting her anemic issues it has helped deb out a lot, so hopefully yours wont go to extremes, and meds will be able to help you, I have learned it is not something you want to take lightly, I never even realized how serious and how troubling it could become

Shelley that is what prompted them to rethink her original dx, they were pumping iron in her through meds and herself through foods. and here readings were not good at all, even with the help of meds and foods, so, again Natalie i say prayers its is an easy fix, and you are feeling better soon:hug:, sorry if i scared you off any, I debated typing this, i didn't want to make you worry more, I am sure if those numbers were at critical levels the docs would be doing something Pronto:hug:

Thanks Frank :hug:.:hug:...I tried googling it but only got stuff about chickens (although it did resemble B2 :confused:). Could you ask deb if she knows any more information on the pullets (?) I would like to investigate further. Intersting that her womanly parts weighted more. Sometimes mine feel really heavy as well and I know one scan shoeed them like twice their normal size.

While my numbers have improved I am thinking about undergoing an endometrial ablation to eliminate the monthly bleeding.

DM Thanks for your reponse. The internet can be a dangerous place as far as medical info goes!! Self-diagnosis, though, is so much fun. So your gastro and PCP both thought a ferritin of 23 was okay? Honestly, I can't say I'm interested in taking iron supplements as I've heard they cause major gastro-intestinal problems. So I'm assuming you still are not taking iron anymore? Have you been re-tested?

yeahbut Wow, you were at a 2? :eek: I guess hemorraghing will do that too you. I will start eating some more turkey! I already eat SO much red meat to begin with -- maybe my body is craving iron??

Shelley Thanks so much for the VERY useful information. I guess I was just confused as to why the first test showed mildly low hemoglobin, hemocrit, and red blood cells and the second CBC 3 weeks later came back normal.

I did get checked for folic acid and B-12. Folic acid was normal and B12 was 344 with a range of 250-1100. I remember a year ago my B12 was in the 600 something range. My vitamin D was very low at 17 last year when I was diagnosed. Got it up higher but she is checking that again (still waiting on result).

Iron serum was 85 with range of 35-145
Total IBC was 299 with a range of 250-450
Unsaturated IBC was 214 with a range of 155-300
% saturation was 28 with range of 20-50
Ferritin was 20 with range of 10-220

So I guess just listen to my primary doc.? She did not suggest iron supplementation of any kind. Although she thought the ferritin and % saturation were not "generous." (whatever that means??!!)

Oh yeah, I forgot I feel cold all the time. That's an iron deficiency symptom? hmmm...

So you see an endocrinologist for anemia related stuff? I thought a hematologist or gastro was in order??

Frank Thanks for info on Deb. Hope she is doing okay.

Dunno, but I certainly feel cold all the time as well. Cept when it's summer. But the last few nights here have been those of frost warnings (not at the freezing point, but close enough to!) and I've been 'cold to the bone' every day. Brrr!

Frost?? I'd give anything for that. It's still 90 degrees here every day.

Hey Franko?? Did you mean "polyps" instead of pullets? Just curious~

I think that's a good course of action, Natalie. Sounds like your Dr is on top of things. take care....

Hey Natalie,

I started with a gastro doc but everything checked out fine. My endo is really like my regular doc when it comes to blood tests because I see her for thyroid stuff. She was the one who noticed the low iron. After the gastro and knowing it could be from my periods I saw the GYN. We did a test where he put me on birth control pills and after two cycles my iron was fine.

I have to say other than your ferritin level it does look like your other iron numbers are fine. Your saturation is good and your TIBC looks good. So maybe your stores are just a bit low. YOu can probably just use a multi vitamin that has a normal daily amount of iron and maybe you do not need to supplement with iron specifically.

Natalie, your B12 is low despite what the range and the doc says. Outside the US anything below 500 or more is considered low. And that can cause pernicous anemia.

Please read some of the B12 threads in the vitamin forum or PN forum. You will see that it is considered low.

You want it close to 1000. Mrsd can help you. You should get some methyl B12 (not the cyano B12 - it does not absorb well. The methyl is better and try to get the sublingual tabs and you just put them under your tongue. I use one by Jarrow that is 3000mcg of B12 and has folate. After using it for a while mine is now 903 on the last test.

Also do you take a b complex? B vitamins get depleted and we all need them for help in maintaining good liver function.

Natalie take a read on this thread on B12. Some good information in there


"In other countries (Japan for example) anyone lower than 500 is treated with supplements...."

http://neurotalk.psychcentral.com/thread54002.html

Shelley asked me to come here...
 

about this thread.

Ferritin levels are your "bank" for the future. If you were to have surgery or a trauma, that low level would be a consideration. It is sort of a near empty on your gas gauge in your car.

For females, low ferritin may reflect heavy periods.

For males -- and I see this more often now than ever, it is an absorption issue.

People who take acid blocking drugs every day, for long periods of time cannot absorb iron.
People with hidden bleeds, also have a problem.
Women with very heavy periods which precede menopause-- called estrogen dominance--- also have problems.

People with malabsorption issues like gluten intolerance.. may also have low ferritin levels.

So while it is a concern, it is not an emergency. But if you have a medical trauma...it can be important.

And I agree with Shelley... your B12 is going DOWN.... and for an MSer...this is a serious thing.
Low B12 levels give the same symptoms as MS.

There is no risk to taking an oral B12 1mg a day --this is about 10% absorbed and will bypass
any errors in intrinsic factor or other autoimmune issues. Take on an empty stomach, and it will only cost you 9 cents a day, with no side effects. In Japan, this would NOT be tolerated, and eventually the US will catch up-- some doctors know this and some don't.
Many of us here use iherb.com to buy our methylcobalamin. The cyano is an artificial version and
not well converted by all people. The methyl form is what our bodies use.

In my opinion, ALL MSers should be using B12.

Thanks Shelley and Mrsd for the helpful information. I understand now the low ferritin is concerning but not an emergency. I don't have heavy periods so maybe it is an absorption problem. I will know about the stool sample in a week. I wondered about the B12 level. I suppose the lower B12 might help explain why the initial CBC showed mild anemia? I just started taking a multi vitamin (which I had not been taking before). I think it's smart to add the B12 like you said. And I have that continual problem with low Vitamin D too.
Thanks again! :hug:

PS: What's the difference between Vitamin B12 shots and the pills?

Me too Natalie, I struggle with my Vitamin D levels. Hard to get em above a 32. I take 2000iu of D3 a day. D3 is the one to take, D2 is not easily converted I think.

I hope you can get to the bottom of it all.

:hug::hug:

I have only done the shots once but I think it is a faster way of getting your stores up quicker.

But if you go the way of the pills definitely get the methyl sublingual version. Methyl is closer to how your body uses it versus the cyano. You can look on the vitamin bottle and it will tell ou whether its methyl or cyano. This is the one I order from iherb. Since its 3000mcg now that my stores are up near 1000 I take it every other day.

I also add in extra b complex on top of my daily vitamin too.

http://www.iherb.com/ProductDetails.aspx?c=1&pid=4461

Hope that helps.

Ditto on the Methyl sublingual b12. Mine's also with folic acid included :)

I should really get back to taking it!

Just thought I'd mention, since I stopped eating red meat, I eat Yves bistro veggie burgers now, and they contain 100% of your daily required b12 intake along with a lot of the B vitamins in good amounts! :) They're also YUMMY!!!

injections are invasive.
 

But since many people here already do injections, it probably
is not so much of an issue.

The majority of injectable B12 is cyano version. If you are one
of the people who cannot convert it, then it doesn't work.

The oral active form methylcobalamin is so inexpensive and easy to use, and it has shown to be comparable to injection.

The only advantage I see for injection is for rapid intervention.
Often we see in the elderly when they are admitted to a long term care facility--very very low B12 levels. So injections are
given daily or every other day to get levels up quickly. Most of the B12 given by injection is cleared out of the blood within 72 hours. It is really a shame that the elderly might not even need the special care if they were targeted earlier. That is why NIH now recommends B12 supplementation for all people over 50, even if no symptoms exist yet.

There has always been a connection to low B12 and MS. In fact there were studies in Japan using mega mega doses up to 40mg a day for MSers-- That study is on PubMed. Many I believe are in the cloudy hard to diagnose category.

The anemia may not be due to low B12 or it may be. The type of anemia most often seen is a macrocytic anemia. MCV volume test reveals that. Anemia may be due to kidney problems, iron deficiency, malabsorption of iron, or hereditary reasons. If you are anemic it is often recommended to use a folic acid supplement, as well.

I just wanted to thank you all for this thread. I had my follow up appt a couple of weeks ago with my pcp. My bloodwork all came back normal. I had gone because my hair has been thinning and I wanted to know if it was my health or stress or the copaxone doing this to me. The bloodwork can back normal. However, he suggested trying an iron supplement due to history with anemia in my past, my 1st pregnancy.
While reading this thread, I decided to whip out my paperwork. B12-428. Ferritin -23. Pretty much, on paper, on the 'scales' I turn up 'healthy.' And for the most part, I agree I 'seem' healthy. But let's be real. I have MS. An often 'hidden' disease :rolleyes:

Now that I've read this, I'm now certain as to what supplement I really should be taking.

Thank You, again, for this thread. Sometimes I believe that in life, there are no coincidences. It's no coincidence to me, tonight, why this thread is sitting here....:hug:

Wow, Gladys, sounds like your ferritin and B-12 are in the same ballpark as mine! I'm definitely going to take B-12 and am thinking about some iron if I can find a supplement that doesn't mess with my digestive system. I have read elsewhere that hair loss is often a sign of iron deficiency. And my hair has been falling out in large amounts off and on for the past 2 years. Just because the range of ferritin is 10-220 doesn't mean that 20 couldn't be low for me. Or 23 be low for you! Good luck with everything. :hug: