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Hi

I have been reading through the posts and see that a lot of people with low ferritin levels also suffer dizziness and balance problems.

I have suffered these problems for years now and every time I catch a virus my problems escalate. (Maybe because my body is trying to dip into my iron reserves which are just not there?) My ferritin levels are 10 though I am not anaemic.

I also have a few of the other symptoms mentioned by many of you i.e. hair loss, palpitations, chest pain.

I have had many visits to the ENT over these last 4 years but nothing has been found regarding my ears. My doctor, however, insists that my problems are because of my ears, I was initially diagnosed with Labrynthitis then Vestibular Neuronitis. I am beginning to wonder if all my problems have been down to having low iron reserves due to all the stuff I am reading on this board.

I have been taking liquid iron for a couple of months now but do not feel any different. I know it takes a while to get into the system and I know I am probably not taking enough. I have been taking liquid iron, six 5ml spoons per day, each spoon has 7mg iron in it. I have changed this to taking one slow release capsule which has 24mg in it plus two spoons of the liquid stuff. Does this seem ok? I am taking a brand called Feroglobin and I am terrified to overdose on this stuff! Is it really ok to take more than the recommended dosage listed on the packet?

Also, those of you who have suffered dizziness, at what level was your ferritin when you stopped experiencing these symptoms? I live in hope!!!

Thank you.


Mac2
I think there might just be hope for you afterall. I have had episodes of dizziness for years. SO much so that I have been to the er on several occasions. Since I am not anemic it never came up on cbc and they always sent me home with 'anxiety' because of the way I described it I guess. Dizziness, loss of sense of reality, pressure in my head, heart racing, etc. I think now it is definitely different than anxiety. i never felt anxious, just sick. After I had my baby (11 months ago) I started to get these dizzy spells more often, and just felt generally uneasy, and terrible. Tired but unable to sleep, etc.

I dont know about your doses of iron. That stuff has never made much sense to me. But there are ladies on here who do know about that. WHen I was first diagnosed with IDA the doc gave me 325 ferrous gluconate 3x a day. Then when I was 'out of the woods' so to speak they moved it down to once a day. But my ferritin was still low at a 1 when they told me to go to once a day.

My guess is I feel better when my ferritin is around 30 or above. I had it tested a few weeks ago. it was 28 and I was feeling better when I had the blood drawn. But then I started to feel gross again after three large tubes of blood were drwan. My mil says tubes of blood wont make you feel worse, but I think when youre teetering on the edge of a normal ferritin, just a little blood loss can make you feel bad again.
Mac2--Welcome to the boards!!

You are not on near enough iron to replete your stores of 10 (which is borderline/no iron stores) whether you are anemic or not. Anemia is the final end stage of iron stores and you are very close. This may be a lot of your problem. There is only one way to find out and that is to replenish your stores and see if the symptoms self correct, if not, you will know to look elsewhere. It's a long hard road for some, so try to be patient.

I think that you will feel much better if you get more iron. I now take 150 mgs of elemental iron daily to replenish ferritin stores, was on 300mgs when anemic. You should ask for a script or find an iron that is higher and easy on the GI tract verses some harsh OTC irons that can make some people really sick.

It is so worth the oral iron therapy, I cannot express to you the difference in your "quality of life" if this is from low stores. I started feeling better and having energy but fatigue remained at a 20ish ferritin. Every time my ferritin raised, I felt even better.

Whenever you have low iron levels along with another underlying condition I think that this condition may become worse. Sometimes you have more than one thing going on and will only know why when you rule out the iron problems. Best of luck to you. Keep us posted. FLFLOWERGIRL:)
hi,i too have this horrible vestibular stuff,i feel disconected from life and myself,foggy hazy eye feeling,cognative issues,buzzing in the head,floaty, ,anxiety,(which is caused by the symptoms),i feel clogged up in my face ,kinda behind the eyes,and also some mild pain with it.ive also had a few attacks of vertigo in the past.i also have a low ferratin..which was 20 about a month ago. dropped from 43 in the space of just over a month..the first time i discovered this iron problem it was at a level of 7.and after a few months of iron treatment my cog fog certainly improved hugely.the recent drop caused me to feel horrendusly unwell ,with all the above symptoms coming back stronger than ever,plus sleeping for hours after the slightest exertion plus depression to boot. I do not know if the low iron causes these symptoms,as they first came on after a rapid prescription drug withdrawal some years ago.But i do know for sure that with my still sensative cns if my iron gets low these symptoms intensify massively.The problem with this vestibular stuff,is that what is already a mine field in terms of looking for causes etc,is made even more of a minefield by not being able to think straight while you are trying to work it all out!
i occasionaly have days where all these syptoms seem to mirraculasly dissapear,and i have the total luxury of being able to see life through clear eyes,which makes me wonder if there are other triggers also.Does anyone else have "days off"?:confused:
I have the ear problems too. My ears ring, my left ear hums, they both feel like they get fluid in them. I am taking prescription iron 3 x a day prescribed by a GI doctor who was very concerned about my low ferritin. It was a 10 when I first got tested. Last time it was a 17, that was about a month ago. I am interested to see if it is going up. I have another appt in Jan. The GI did not want to do any other testing, he just wants to see if I can get my iron up or if I am having absorption problems. I am hoping all of my ear stuff will clear up as my ferritin goes up. It is my most bothersome symptom.
[QUOTE=Mac2;3803973]Hi

I have been reading through the posts and see that a lot of people with low ferritin levels also suffer dizziness and balance problems.

I have suffered these problems for years now and every time I catch a virus my problems escalate. (Maybe because my body is trying to dip into my iron reserves which are just not there?) My ferritin levels are 10 though I am not anaemic.

I also have a few of the other symptoms mentioned by many of you i.e. hair loss, palpitations, chest pain.

I have had many visits to the ENT over these last 4 years but nothing has been found regarding my ears. My doctor, however, insists that my problems are because of my ears, I was initially diagnosed with Labrynthitis then Vestibular Neuronitis. I am beginning to wonder if all my problems have been down to having low iron reserves due to all the stuff I am reading on this board.

I have been taking liquid iron for a couple of months now but do not feel any different. I know it takes a while to get into the system and I know I am probably not taking enough. I have been taking liquid iron, six 5ml spoons per day, each spoon has 7mg iron in it. I have changed this to taking one slow release capsule which has 24mg in it plus two spoons of the liquid stuff. Does this seem ok? I am taking a brand called Feroglobin and I am terrified to overdose on this stuff! Is it really ok to take more than the recommended dosage listed on the packet?

Also, those of you who have suffered dizziness, at what level was your ferritin when you stopped experiencing these symptoms? I live in hope!!!

Thank you.


Mac2[/QUOTE]

You may also want to get your thyroid(TSH, Free T3, and Free T-3 and antibody tested). When I problems started about 4 years ago, it was due to anemia. I had heavy periods, bleeding ulcers and having 5 kids over the years ran my system down. No doctor ever tested me for anything until I was at death's door. I was finally dx with hypothyroidism, ulcers, and heavy period, and absorption problems which I do not absorb iron or vit at all.
It is a shame that you have to be almost dead for doctors take you seriously.
I also had sinus problems and finally had sinus surgery. I still have dizziness when I my sinus acts up. But my ENT told me that my eyes are not connecting signals to my brain. Also found out that I have herniated c spine disc which also causes dizziness. The only thing that works really well is half a Xanax for the dizziness. My ENT says it helps to calm the nerves in my head/ear.
Your ferritin should be at least 50 according to my hematologist. My hair stops falling around 70. The only way I can get enough iron is by infusion. You may want to get your basic test at your PCP but a hematologist can help you with your iron. They know more about ferritin levels than a PCP.
I am taking B12 (did shots weekly for 1 month and am now doing sublingual 2 -3 times a day). My B12 was almost 600 (I can't remember the exact number) but I guess it could be a little higher. I have had 3 abdominal surgeries ( 2 c sections and 1 fibroid removal) + 4 miscarriages, 2 healthy pregnancies, and nursed 2 babies fora total of 3 years (all of this within the past 6 years). I will have further testing if my ferritin does not go up enough by end of Jan. I swear I am feeling a little better though, so hoping everything is on the upswing. I am pretty sure that the reason my iron stores got low was because of all of the surgeries and pregnancies.
i think you are right about all the ops etc,i would have to eat half a raw cow every day to get my iron up.once your stores are that low i believe it must be very hard to get them back up from diet alone,my diet is healthy and varied,but clearly the blood loss is too overwhealming.i also have had 2 c sections,and misscarages,and always hemmorage badly.but this was years ago.i wonder if i just never got my iron up suficiently after this.interesting how the b12 is considered low at 600?mine was 394 last count,it seems to vary from country to country as to whats considered deficient?i believe they dont treat b12 definciency here untill you are at 200!
hi mac.i stop feeling dizzy at around 40 and above.tho I still have other symptoms mildly. I recently got up to 57.the highest its been,for around 18 months.i was ok there,but know I could have felt bettter.
frankly,this ferratin / period stuff is starting to get me down big time,and i wondered if anyone has the problem of their ferratin constantly going up and down due to extremely heavy & irregular periods?i have been on iron for about 18 months ,yet even with the suplimentation after every bleed,i am left pale,& ill, the change in me after yet another period is quite dramatic.does anyone else expierience similar issues?I have bled heavily for ten days,after the feratin result of 57 and feel terrible now,am breathless,anxious,(even though i am quite happy!)low energy,foggy headed,aches and pains ,wobbly , head & sinus pain,digestion stuff.
this is all so tedious,as its very disruptive to my life...i am hoping to find a salution in the merena coil soon..would so apprieciate any feed back..
Hi Tibby2

Nice to hear from you. I don't know if you have picked up on my other posts but my ferritin which was tested a couple of weeks ago after taking supplements for 5 months was only up to 22! I am still feeling like c*** and have been off work for 4 weeks with terrible dizziness and balance problems. Life sucks! Can't wait to get up to a level of 50 and see if I feel any better.

I think that an attack of Labyrinthitis started all my problems. That lasted six months and occured 4 years ago. I have always, since 13 years old had heavy periods. They used to last seven days but in the last few years have only lasted 3 days but have been really heavy. So, I think my ferritin levels may have been low for years before this attack of Labyrinthitis (ear virus which actually causes dizzines, balance problems, anxiety etc.). Obviously when I got this ear stuff, my body would have tried to dip into my iron reserves to help me recover and they just weren't there. Since I was first ill, I completely changed my diet to a good healthy one with lots of veg, fruit etc. I think this is why I am not actually anaemic. So, the battle rages on - every time I get a silly little cold or something the dizzies take over my life. I also think that this is not still Labyrinthitis (which my docs insist it still is), because a) they have never found anything wrong with my ears, b) I have not suffered from anxiety since the first attack (which is classic with inner ear disorders) and c) it is very rare to keep on suffering like this with Labs (4 years now).


In answer to your question, I have seen it mentioned lots of times that ferritin levels go up and down but I don't know what causes that. I know that when I have my period I am like death warmed up and feel so tired. I'm not good at knowing when I am actually due but I can tell because the day before it comes I am so unbelievably tired. This lasts till a few days after it is over and then I start to feel normal again (as regards the tiredness).

I can only sympathise with you as I know exactly how life limiting this all is. I am sitting at home at the moment, unable to work, bored out of my skull and sick of feeling dizzy. Do you have to work?

Take care:)

Mac2
[QUOTE=tibby2;3898715]hi mac.i stop feeling dizzy at around 40 and above.tho I still have other symptoms mildly. I recently got up to 57.the highest its been,for around 18 months.i was ok there,but know I could have felt bettter.
frankly,this ferratin / period stuff is starting to get me down big time,and i wondered if anyone has the problem of their ferratin constantly going up and down due to extremely heavy & irregular periods?i have been on iron for about 18 months ,yet even with the suplimentation after every bleed,i am left pale,& ill, the change in me after yet another period is quite dramatic.does anyone else expierience similar issues?I have bled heavily for ten days,after the feratin result of 57 and feel terrible now,am breathless,anxious,(even though i am quite happy!)low energy,foggy headed,aches and pains ,wobbly , head & sinus pain,digestion stuff.
this is all so tedious,as its very disruptive to my life...i am hoping to find a salution in the merena coil soon..would so apprieciate any feed back..[/QUOTE]


Hi Tibby i am goining to have the coil fitted too in a couple of weeks, i am hoping it will stop the bleeding which the docs say is the cause of me losing iron. I only bleed heavily for 2-3 days but they say it is enough to make the difference.
[QUOTE=Mac2;3899249]Hi Tibby2

Nice to hear from you. I don't know if you have picked up on my other posts but my ferritin which was tested a couple of weeks ago after taking supplements for 5 months was only up to 22! I am still feeling like c*** and have been off work for 4 weeks with terrible dizziness and balance problems. Life sucks! Can't wait to get up to a level of 50 and see if I feel any better.

I think that an attack of Labyrinthitis started all my problems. That lasted six months and occured 4 years ago. I have always, since 13 years old had heavy periods. They used to last seven days but in the last few years have only lasted 3 days but have been really heavy. So, I think my ferritin levels may have been low for years before this attack of Labyrinthitis (ear virus which actually causes dizzines, balance problems, anxiety etc.). Obviously when I got this ear stuff, my body would have tried to dip into my iron reserves to help me recover and they just weren't there. Since I was first ill, I completely changed my diet to a good healthy one with lots of veg, fruit etc. I think this is why I am not actually anaemic. So, the battle rages on - every time I get a silly little cold or something the dizzies take over my life. I also think that this is not still Labyrinthitis (which my docs insist it still is), because a) they have never found anything wrong with my ears, b) I have not suffered from anxiety since the first attack (which is classic with inner ear disorders) and c) it is very rare to keep on suffering like this with Labs (4 years now).


In answer to your question, I have seen it mentioned lots of times that ferritin levels go up and down but I don't know what causes that. I know that when I have my period I am like death warmed up and feel so tired. I'm not good at knowing when I am actually due but I can tell because the day before it comes I am so unbelievably tired. This lasts till a few days after it is over and then I start to feel normal


mac,thanks for replying .It really is such a drag this stuff isn't it..I really find it interesting the way the balance stuff goes with it,i have read a lot of that,& also expierience it..i don't think it has anything to do with ears to be honest.,another thing for the doctors to fob you off with when they just don't have a clue,and don't want to waste time & money on you.they will also say you don't have symptoms with low ferratin,but I have all the symptoms of aniemia,untill my levels come up again.,like yourself,i feel awful,during bleeds and for about a week after,how im feeling is reflected in my palid complexion.. ..my periods went wrong around the time my iron dropped to next to nothing,and I believe its the ongoing defficiency puting them out of whack.it can't be particularly good for us physicaly or mentaly to be defficient for so long.
on a lighter note!i really do think you will feel much better,when your levels get past around 40 or so,like I mentioned,at 57 I felt so much better.i think a level of 100 & over would be optimal though.seems like a long way away at the moment.!good luck with getting your levels back up mac.
[QUOTE=Mac2;3903999]Hi Tibby2

I felt really off again this morning but better this afternoon. My symptoms are as follows

1. Dizziness
2. Balance problems where I feel I am going to fall over
3. Fatigue
4. Palpitations on and off
5. Brain fog
6. Headaches
7. Itchy skin
8. allergies - I don't know if this is connected
9. asthma worse



yes,Mac,.severely. but i think it started from the drug withdrawal.I was so bad I had to shuffle along the walls to get from one room to the other .couldn't go out some days etc.. I have the double whammy of that & the low iron.. these days I feel fine except for around & on my period,since I began the iron. I rarely get particularly dizzy now...but have noticed it slightly the last few days. because of rediculas bleeding. I know for sure its down to that .i get all your symptoms apart from the asma
even itchy scalp sometimes. I also go really pale on & around my period ,& breathless,anxious,bloating,& spaced out,oh also blood sgar issues... its a joy eh mac.! I am feling a bit better today...oh & don't know about you,but my body seems to respond to the iron better if I take it at the same times evey day & always with some form of vitality c....
[QUOTE=Mac2;3905325]Hi Tibby2

Isn't this just amazing. That's exactly what I am like, need support when walking outside and grabbing onto stuff at my worst times. It's quite funny really when you have a 'turn' and have to grab onto someone and they are not expecting it!
Funny you should say about the blood sugars as well. I don't have a problem with my sugars, you know when you do the test, mine are always perfectly normal, but I do need to eat at certain times of the day. I need something at about 10.30, (piece off fruit or a couple of crackers), and then I have to have an early lunch otherwise I feel like I am going to pass out. So, there is definitely something going on there. Got the dreaded period today, heads totally gone. Will bump the iron up over the next fews days, don't want my precious ferritin draining away - lol!



Can I just ask - in an earlier post you said that your ferritin dropped from 43 to 20 in the space of a month. Why do you think that was? Was there a reason why you had two ferritin tests within the month?

Glad to hear you are feeling better today :)



well hello mac!. i had the test as i routinely moniteri my ferratin levels occasionaly. at that point it was on 43 ,high for me,because i had been treating myself properly & regularly with iron, & vitamin c for once! lol.anyway,after i had that test ,i had a period.. my periods are never just periods,they are heamorrages .& low & behold became inreasingly ill,it just crept up on me.. i felt like a mess ,shaky,pale,sweaty ,sleeping all the time .was even told i had m.e! i asked them to test my ferratin on advice of a friend who knows about my iron thing. & it had droped by 23 units ,within four weeks of the first test.,the cause was the one period.It took a couple of weeks or more to build it back up again... this is an ongoing issue for me,which is sometimes made worse by me being lax with the pills,running out etc. i would be dead without a doubt if i didnt just have that iron holding me through bleeds.but thats all it does really. getting the levels up & staying up will be impossable,while im still having periods like i do.!
anyways, keep getting your levels up & I bet your dizzeness will start to trail off .!will be interested to see how you go mac !
Mac2[/QUOTE]
Hi,

What kind of specialist can I see for fatigue? This has been going on for years. I have been to:
1) My family Dr who is also a GYN. She did blood tests and said Im fine.
2) Went to a diet center Oct. 2008 to find relief with b12 shots. They did blood test and gave me the iron supplement Repliva 21/7. I feel alot better BUT, there is this underlying fatigue. I took the iron for 3 months and they took me off. I crashed a week later. Very short of breath. No energy. It even seemed to trigger feelings of anxiety. Maybe because I was so short of breath! So the diet center put me back on Repliva and I feel much better! The recommended a Hematologist.
2) I went to a Hematologist March 6 2009: She drew 7 vials of blood. Checked hormones, Thyroid, iron and more i guess. She said my iron was good but on the low side and to keep taking Repliva. And that is all the knowledge that she had! DID NOT MENTION FERRITIN UNTILL I ASKED! She said it was low.

I need a specialist that helps people specifically with low Ferritan OR at least Fatigue. I mean, I am just guessing the FERRITAN is the problem.

ANY knowledge that you have would be helpful. Thank You
Hi there, and welcome.

Sorry to hear that you are feeling so tired. Having low ferritin will give symptoms of fatigue amongst other things and if yours is low then this is probably the problem. Many doctors do not even bother that you are low but if you look on these boards many of the girls here do not feel better till they get their levels right up. Can you get in touch with your doctor and ask what your ferritin level was? They will have the actual figure and it would help you to see where you stand. Mine was at 22 last time I was tested and my GPs seem to think that this is ok - I think otherwise and have told them I want my levels up to at least 60 or higher. They haven't got a clue!!

Obviously if you have had B12 shots in the past, they all go hand in hand, so if you are not keeping your iron levels etc up on a regular basis, and by that I mean maintenance dose after taking iron supplements for a while, then you will probably dip back down again and your symptoms will be ongoing. Do you include iron rich foods in your diet?

I don't know if there are any specialists as such for this but I think it is largely commonsense and self treatment which get us all by!

Take care

Mac2 x
Hi Ladies,

Fatigue - it took me six months to jump by 12 points to get my ferritin to 22. It takes a long time! I am still taking supplements daily and the one I take is called FERSADAY (100mg) which is ferrous fumertate 322mg. I take one of these per day, this is the one the doctor has prescribed for me. I also take one FEROGLOBIN B12 tablet per day which is 24mg ferrous fumerate and includes other B vits and zinc and copper. This is from a company called Vitabiotics and I get it online as I don't have a supplier near me. They are really gentle on the stomach too. So in all I take 124mg iron per day as a supplement, then of course in my diet I include red meat a few times a week, which is the best way to get iron. Also, cereals are a good source as iron is added but I am not a fan of cereal. The spinach you are taking will probably not be doing you any good ironwise as it also has something in it that cancels the benefits of the iron out! I also have plenty of veg and fruit, brocolli is a good source. You must also take Vit C and I take a high dose supplement which helps with absorption of the iron. Stuff such as calcium, tea and coffee can hinder absortion so these are best avoided until a couple of hours after or before taking your pills.

I have been taking this increased dosage of iron for the past couple of months so I don't know what my ferritin is at at the moment, hopefully it is much higher but I do not feel any better.

I also have crashing fatigue where I just cannot seem to keep going for a second longer but I always seem to keep going!

God knows how long my ferritin has been low, but I was struck down by Labyrinthitis 4 years ago (inner ear virus), and I too have put loads of weight on, I just cannot seem to lose it! I am putting it down to middle age because I am 48 years old. I have a cousin who is the same age as me as she has no other health problems and she is bigger than me!!

Kitty - please don't feel guilty that you cannot do what you used to do. I used to blitz the whole house on a Monday every week and EVERYTHING would get done. Now I have to accept that I cannot do that anymore because it totally wears me out and I do a little each day. You do have something wrong with you and it is not an excuse -it is real!

I have never been a one for exercise but I love to walk. Why don't you try that? It is good for the health and good for the mind. Give it a go - you might enjoy it!

Take care

Mac2 x
Mac2 - that is some good advice and tips, thanks. I've also read that red wine inhibits iron absorbtion while white wine enhances it - just in case you like a glass of wine - :)

With exercising and low ferritin, exercise is good, but keep it gentle and minimal while ferritin is low. Obviously this is due to tiring easily due to less oxygen running through your system due to insufficient iron stores to transport it. Overtaxing the system can actually send your iron stores falling again.

Fatigue - as your ferritin levels rise you should feel better and less fatigued, unless there is an underlining cause. In my case i did have an underlining cause. I had an autoimmune thyroid condition as well as adrenal fatigue. I became suspicious why i was so deathly tired even when my ferritin had risen into the 40's and 50's.

The person who gave me the most help with my ferritin was a Trichologist (hair/scalp specialist) due to my hair shedding. Now my thyroid doctor monitors my ferritin levels.

Most people have their GP monitor their ferritin and i'm sure there are other doctors who are capable of dealing with ferritin. A lot of doctors will however tell you that your ferritin is fine once it falls within the lab range, even if it's at the bottom of the range. Sometimes it comes down to either arguing with a doctor that it needs to be higher or simply going it on your own and taking the iron supplements and then asking for a retest 3 months down the track.





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