Ferritin results came back, and they are lower!

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
sleeplesssusan
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Ferritin results came back, and they are lower!

Postby sleeplesssusan » Tue Nov 06, 2007 2:52 pm

Well the doctor called me back... my ferritin level is even lower then the last time it was checked... that was last spring I believe and I have been taking iron along with absorption supplements ever since! I was 13 back when I was checked the first time, now I am at 12... what the heck does that mean?

She is putting me on prescription iron therapy... not sure what yet but I will be picking it up from the pharmacy soon so I guess I will find out then.

So does anyone know what it means when your ferritin level keeps dropping even while on iron? Am I missing something or should I be asking for other tests as well? Very confused as I thought they would tell me that it had gone up a bit.

SleeplessSusan
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KBear
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Postby KBear » Tue Nov 06, 2007 3:33 pm

If you have heavy periods this could be the reason your iron levels are dropping. Not to scare you but other forms of internal bleeding can lower your iron levels as well like polyps in the colon, or Crohns disease. Or maybe your body just isn't absorbing the iron you are taking. Pregnancy can also lower your iron stores.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

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Postby sleeplesssusan » Tue Nov 06, 2007 4:15 pm

I read the same thing about internal bleeding, not what I wanted to hear but what can you do?

No chance of the pregnancy thing... LOL. I am 45 and had my tubes tied after my second son was born.

The pharmacy does not have the med in stock that the doctor requested so they have it on order and it should be in tomorrow. The doctor has requested a 3 month follow up with the blood work.

Has anyone else had this issue?
Looking for answers!

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Postby ViewsAskew » Tue Nov 06, 2007 5:16 pm

Kathy had lots of good ideas to check. Do you have a good internist?

When mine was so low - like 8 - my RLS doc wanted my GP to immediately start looking at my gut, stomach, etc. to see where it might be going. For me, turned out simply to be "normal" for me.
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Postby eliza » Tue Nov 06, 2007 9:10 pm

My new neurologist seemed surprised and pleased that mine had increased with 3 iron tabs/day. He noted that some people cannot absorb iron and that's why theirs is so low. If that's the case, then somehow I assume the docs address that. So I understood that there could be several causes for low iron.

Take care,
Eliza

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Postby SquirmingSusan » Wed Nov 07, 2007 4:00 am

Apparently I'm one of those who doesn't absorb iron well, probably because I had gastric bypass surgery a few years ago. Last January my ferritin was 8. Then I took Niferex 150 (with 150mg of highly absorbable iron) for 4 months or so and it made it all the way up to 12. Oh boy. :? So over the summer I had 4 iron infusions, but I haven't had it checked since.

What's really strange is that each iron infusion had 150mg of iron - the same dose as each daily iron pill I'd been taking for months. I'm having a physical in a couple weeks and I'll get it checked.

I do have monthly hemorrhages, though, that make it a struggle to just keep up with the iron. I must call the gynecologist and get that ablation schedule, sigh.
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Postby djohnso55 » Sat Jan 31, 2009 9:04 pm

My ferritin level is 8 and so I had a colonoscopy done and now they want me to have the upper g i done. I don't think I will have any internal bleeding I am past menopause. From what I am reading, it seems like people with RLS just have low ferritin levels and they don't know why. But I am going to have the test done, I guess just to rule out anything else.

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Postby Neco » Sat Jan 31, 2009 11:31 pm

Iron is a very underresearched subject in my opinion.. Iron in relation to RLS in general is also very confusing, because there is contradictory information all over the place it seems..

People do believe Iron and RLS are related, and it seems to be supported by trials conducted at Johns Hopkins a while back. They took patients who had confirmed RLS but were not taking any medication, and did spinal taps and Iron infusions.

I think a good deal of them had normal blood iron levels, but I am guessing it was a mix of high and low. However when they did spinal taps they discovered all the patients had extremely low Iron levels in their Cerebral Spinal Fluid (CSF). They were given infusions to get their Iron up around or over 200 and sent everyone on their merry way.. However around two years later people began calling because their RLS had come back, so they brought some people back in for more spinal taps and found that again, their CSF iron levels were very low.

This seems to suggest that the problem is not necesarrily with low iron absortion, but with iron management. The body for some reason is depleting its supply faster than it can replenish it, so I would think this means something is going wrong inside our bodies that is causing something, somewhere, to leech massive amounts of Iron from our reserve stores. Or it could also mean that it could be a problem with excreting massive amounts of iron out when we go to the bathroom, etc.

They didn't explore further to my knowledge, so there really is not answer as to WHY this is happening, but those are my best guesses.

I know in my case, I have normal ferriton levels, but have Refractory RLS, so it's all a mystery to me.

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Postby ViewsAskew » Sun Feb 01, 2009 2:43 am

As Zach noted, iron is related and important. In addition to the research Zach noted, there is other research that implicates iron utilization and absorption, but in the brain itself. All of this research consistently finds that iron is involved....but how? It's involved in multiple ways and no one has it figured out.

Another mystery is that the iron is being depleted through an unknown mechanism. A non RLS person who increased their ferritin to over 200 would probably NEVER have it get low again in his or her lifetime. Yet RLSers become low in a short period - some as short as a few months after in iron infusion.

This mechanism has not been identified, however there is NO reason to believe that it's dangerous to us, nor is it happening in a way that it would happen to a non RLS person - for example though bleeding intestinally, etc.

The RLS researchers are working hard to figure it out....but that takes money and few people give money to RLS research. It's through our memberships with the RLS Foundation that we help to fund this research, among other things.
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Beth Dinoff
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Daughter just diagnosed and treated

Postby Beth Dinoff » Thu Apr 30, 2009 2:13 am

Greetings everyone. I'm new to the discussion board. My daughter was just diagnosed with RLS (after us complaining to MDs about the symptoms for 3 years now). Finally saw the neurologist and he checked her blood for anemia (which she does have) but he also checked her ferritin level. It was 2.9 - well below the number of 60 that he was looking for. Says it is probably related to menstrual bleeding.

Today we saw hematology/oncology and he recommended ferritin infusion treatments. She will have five - one was given today, then she will have another one on Friday, next Monday, Wednesday, and Friday. He will re-check iron and ferritin in 8 weeks.

Then the hematology/oncology guy totally disagreed with the neurologist about RLS having nothing to do with Iron levels. Said he would recommend treatment because she was severely anemic - NOT because of RLS. So, TWO EXPERTS and naturally TWO OPINIONS.

Can anybody tell me what else I should be doing to take care of my daughter? I don't want to overlook any options.

Peace!

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Postby ViewsAskew » Thu Apr 30, 2009 3:29 am

Beth - tough place to be as a mom. Glad your daughter has you looking out for her.

Only the RLS folk realize the importance of ferritin. The hematology folk haven't gotten the info yet, unfortunately - it's all very new research. If she didn't have anemia, she'd potentially NOT get the infusion because of that.

I guess I'd be a bit concerned because she's so anemic. Low ferritin is very common in RLS, but anemia often has a cause. Sure, it could be heavy periods, but that's not that common. My best friend had 14 day periods and changed pads hourly before she became anemic.

The number one symptom of undiagnosed celiac disease is anemia. Because anemia can cause RLS, undiagnosed celiacs have RLS quite commonly - about 35% of them. It takes on average 7 years to diagnose celiac, so people often are treated for anemia without ever checking to see if celiac is involved. Approximately 1 out of 100 people in the US have celiac, yet 97% of them are undiagnosed.

I'm NOT saying she has celiac, but if it was me, I'd want to check out the anemia a bit further and I probably would press a bit for more rigorous testing and evaluation by the docs if they only offer "heavy periods" as a reason.

Per the RLS, seems like you are doing the right things. The infusions may totally resolve it....let's hope so.

Oh, does anyone on either side of the family have RLS?
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Postby SquirmingSusan » Thu Apr 30, 2009 4:02 am

Hi Beth, and welcome to the forum. The neurologist is correct about RLS often being related to low ferritin. The hematologist seemingly needs to get a clue. :roll: But at least she's getting the iron infusions, and hopefully that will ease up the RLS.

I'm one who was often anemic due to heavy periods. I finally had a uterine ablation done when I was 50 to stop the bleeding. But it's a good idea to really check out what's causing her to be so low on ferritin. How old is your daughter?
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Postby woodsie357 » Sat May 02, 2009 8:55 pm

welcome to the board. I'm so sorry the two of you have had to go through this. I hope she get's relief and you find what's causing the anemia.
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Iron infusions

Postby restlessruthie » Sat Jul 04, 2009 8:34 am

]Hello[I am returning after a long absence. My RLS is now severe. I have it on and off all day long. I'm taking the highest dosage of generic neurontin, requip and ultram and have had 4 iron infusions in June. The infusions have helped a lot; I had a low ferriten and then it normalized but my neurologist said that many RLS patients have a normal ferriten but still benifit from the infusuons.

Interestingly, I have a history of migraines, diabetes, sleep apnea--I wonder if their all related? There is also
a family history but not as severe as mine.

I am very interested in hearing about others who have had these infusuions and I hope Medicare and Blue Cross pays for it!!

Restless Ruthie

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Postby ViewsAskew » Sun Jul 05, 2009 7:45 am

RR - I am exhausted and heading to bed, so can't write much (it won't make sense if I try, I imagine).

Are you familiar with augmentation? If so, do you think this might be happening? If not, please read the sticky posts in the Pharma section. One of the posts in that thread will explain it.

More later...
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