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For the past five years, I have felt like absolute crap. When it first began, I was given a blood test and was told my iron and hemaglobin were fine but my Ferritin was at a 6. I was prescribed iron pills but had to stop taking them because they made me so sick. Two years ago, I was put on birth control because of ovarian cysts. I haven't had periods since but my symptoms haven't changed.

I feel tired all the time. I will get a full night of sleep, be up for a couple hours, nap for three or four or five hours, then go back to sleep for twelve. It isn't normal. My joints all hurt, I am constantly dizzy and I get short of breath when I try doing anything even semi-strenuous. My vision goes blurry sometimes and I have a hard time concentrating and remembering things. The longer this has gone on the worse my symptoms seem to get.

From test to test, the only common denominator has been my low ferritin. After five years and putting a stop to my periods, my level has only gone up to a 12 which I am told is on the low end of normal. The first dr told me to "eat some spinach." So, I went to see a hematologist and she told me essentially that I'm crazy and to take some multivitamins because my ferritin can't be causing any of those problems since my hemaglobin and blood iron are fine. I told her that I've been reading up on it and even a 12 for ferritin is NOT ok. She said to wait 6 months and have the levels rechecked. In her words, "You've been dealing with it for 5 years, what's another 6 months?" Not only was I insulted but I'm frustrated. I can't keep living this way. I'm 21 and I feel like I'm 80. I want to be able to have fun and go out without feeling like I've been hit by a train or that I haven't slept in a year.

Does anyone have any advice or can anyone recommend a Dr in MI who knows at least something about low ferritin?
I also think you could submit the lack of attention-neglect or however you want to describe it to the hospital. Most hospitals have patient relations that address these types of issues. It's frustrating...beyond frustrating.....To share a long story and hope that it adds to the list on here and perhaps motivates others to advocate for themselves. Sorry this is so long and it's okay to not read the whole thing but in a way it's like I needed a place to let it all out.

I have never been a PCP type of person, I usually go to urgent care when I am not feeling well. In 2008 I started a rigorous academic program and within months I started feeling anxious, high HR at rest (like 80-high 90s, even low 100s) I thought it was hypovolemia r/t to lack of fluid intake...as I also had low BP 80s/60s. then I would get the palpitations occasionally. I then noticed the decline in my cognitive abilities...I simply felt easily confused, said things that did not make sense, slow thinking, foggy, I mean it goes on and on. I would study for hours for an exam and the outcome would seem like I never studied. During this I did not have any other symptoms other than the above. I establish care with a PCP and was told I had anxiety. Mind you I was seeing two pcps, basically I didn't care who was available when I was not feeling well. However it was at the same hospital so they had access to all my information. The brains of two general practitioners is not always better than one...huh? Anyways so the first thing they offered me was beta blockers to slow down my heart rate, I said no because I was easily feeling dizzy, I was not interested in reducing my heart rate and feeling even more dizzy. They then offered to put me on anti anxiety medication, I said okay I will try it (because at this point I was desperate at how it was affecting my academic performance). I tried it for like 3-4 refills? so equivalent to months? anyways I thought I noticed mental clarity at first but obviously not because i was still tanking in school and still feeling high HR and anxious. I took myself off it. At that time my ferritin was tested:22.

I progressed through school but ended up finishing late as this entire ordeal caused me really screw up in a class and had to do a repeat. Up until that point I was getting by...fairly well actually high 3.4...anyways so I am grateful that I was able to finish school period, because in the program I am in you can only do one repeat then you're out. So although i felt crappy most days (i.e. irritable, anxious...like I was ready to pounce at any moment, dizzy-with rising from sitting to standing, etc) I continued.... During the summer I was very active, long hiking days (5-6 hours) working out at least 5 days a week, sometimes twice. I started to notice severity in symptoms in February 2010, where I would have bouts of shortness of breath. i ignored it...then I started experiencing tingling of my right arm and legs to the point that I could not sit, stand, or lay down without discomfort. One night I stayed up , typed up a 12 page paper and woke up the next morning barely able to feel my arms and them I had chest symptoms, I thought i was having heart related problems so I rushed to the ER arrggghhh (ER's suck unless you're literally at the life or death point). anyways the doctor laughed at me and said it was because of the staying up all night to write that paper. EKG was normal.

The tingling and numbness continued of my right extremities. I continued to ignore it and finally started doing online research. I went to urgent care one day and was told it was possibly b12 def, or inflammation. Inflammation made more sense as I have been taking b12 like crazy since I dont eat meat. I took NSAID for 3 days saw no improvements, stopped taking it. I FINALLY re-establish care with PCP in like October? my symptoms at this point: foggy brain, swaying feeling when I walked, easily fatigues with minimal exertion, numbness/tngling of right leg and arms, muscle spasm all over, excessive bruising that I had no idea where they came from and aches all over. this is where i get pissed...my PCP actually told me that it was not abnormal for people to feel a little dizzy. then after doing an assessment she said I had a heart murmur. (i've heard that once before back in 2007 with the other PCP). then she asked me if I was depressed...and I said are you kidding? for someone with the history that I have i am NOT depressed...what's depressing are these symptoms that are affecting my activities of daily living. I got emotional at that point and was teary eyed...(for as long as I can remember I cry over everything...i mean when I watch the news I sometimes get teary, if my friend is crying my heart breaks and I cry...get the pattern?). Anyways she tells me well most of the patients I see are not as emotional as you are...and at that time I'm appalled, then I leave her office and I'm thinking i should have asked her if most of her patient had the same genetic make up as I did...what a silly person...later to find out she is simply inexperienced....practicing approx 1-2 years...any longer and I would be shocked. anyways she did a metabolic panel, and a vitamin d and cholesterol at my request. the metabolic panel was normal, the latter needed improvement, high cholesterol, low v. d. then she referred me to a neurologist...who did a bunch of B.S. tests in the office, MRI of spine/brain to R/O MS and then sent me to PT after. PT thought I was "weak" because i had poor core support d/t to poor posture and also nerve tightness...I mean if I was to hold a core workout I had tremors. anyways did that for a while and the beginning it seem to help but then not anymore. I started seeing an ND that i thought would do amazing things for me...they tested my ferritin at that point for the first time since the 2007-08 tests...it was 15 WHOA it was on the way down hill. but as some have said the ND did not seem to be wowed by it...the medical students that were aiding in my care on the other hand were concerned. they started treating me for a bunch of other things as at this point I was having jaundice of the sclera, inside of the mouth, hands and feet. and the chronically present cold hands and feet and intolerance to cold. I started to also have allergic reactions like cobbling in the back of my throat (without pain) and redness of my ears and nose. I was given hylands ferrum phosphate...which I thought had iron in it...turns out helps you bind iron..hello...who does that? anyways I kept pushing for a b12 test but they would ignore my requests. After a month of increasing symptoms, extreme fatigue, rapid HR, balance/dizziness, GI issues (bloating, flatulence, pale stools) I said screw this and looked for another ND. I finally got her to give process a b12/folate/MMA/homocystein test and after lab draws give me a b12 shot as I have been taking a LOT of b12 to keep my energy levels up. anyways the results came back and was normal i actually had a LOT of b12 way above the normal range...nothing to worry about with this...i just need to stop taking it. so then she started thinking it may be thyroid...as my TSH has been low in the most recent test i had done? I can't recall now. oh did I mention I had bad concentration and memory loss? so I'm currently waiting on the lab for the complete thyroid panel. HOWEVER, so here's the sort of good thing....when i saw the ND s/p the b12 injeciton, she said I needed to be taking iron pills with my ferritin level at 15, gave me some ferrous sulfate 325 and I am suppose to be taking it 3 times a day with meals and vit c blah blah. since i have been taking this I have seeing improvement already. it's only been like a few days...but I had also been incorporating more iron rich non-meat foots with the ferrum phostphate so I think it was beginning to reverse and the iron pills only sped it along. my hands and feet are still yellow at times, but let cold, my sclera is returning to white, I still have the allergic reaction signs but I'm sure those will go away too. I used to see floaters in my right eye, which now only happens when I am out in the cold, as do the yellow of the hands. my leg and arm numbness and tingling does come and go....my bruises seem to be almost invisible, some are still there. the broken blood vessels in my eyes seem to be going away slowly. the foggy brain is also decreasing. i still have aches in my body but once i get my levels up it should help...I have been completely sedentary for like 2 months...it's driving me insane, but I know i don't wait a bit for my levels to rise before working out I may end up back at square one. oh and my rate has been the lowest i have seen it...occasionally it can be 90s with light exertion, but again I don't thin everything will be reversed like that...but I actually have seen my resting HR in the 60s-70s with a mixture of the 80-90s. my BP is in the high 90s-100s/65-70 my bloating has gone down, my stool is returning to brown and not orangish/pale/whatever. my abdominal pain has also gone down. palpitation has gone down...occasionally I get them versus frequent.

I think I covered everything...this experience has left me with a constant feeling of arrggghhhh! i have found that my past admiral of providers knowledge has dwindled. in fact I think some patients are smarter than some physicians...mainly because the patient has an interest in treating their problem, the physician is more interest in seeing your labs be within the normal limits. I keep saying had my first PCP said hey lets' get you on iron pills to raise those levels I would not have accrued the bills i have today...or even if my 2010 PCP said hey lets' test vit b12/ferritin to rule out other possibilities, I would not have stepped into the neurologist office and would not have accrued the additional bills from 2 NDs...if the first ND who actually tested for the ferritin said hey lets get you on iron pills to raise this ferritin level up, I would not have accrued additional costs with a 2nd ND. UGH...so now I have decided to take charge of my own health...and extend to this to others out there. if one provider say don't worry about it...you should get rid of them and seek another. if you're provider seems to be heading in the direction of malpractice/neglect of what you are telling them...contact the facility they work with and kindly share this with the proper individual. I say kindly because I have no interest in ruining someones' hard work career goals, however it is a safety issue and I simply want to bring it to their attention in a professional way. I mean I was completely BED ridden for like a couple weeks and still my provider has a eh response to it.

Well this is my story. it is 2:24am where I am and I have some insomnia...but I expect that to improve...oh and night sweats...had that since 2007, told my doctor, since it wasn't the obvious (TB) it was an unknown etiology. Hope the best for everyone in finding the underlying causes to what's going on with you. Gather ALL your symptoms, search online for them and see which closely related to you and take it into your doctor and have them do a RULE OUT...
[QUOTE=WildCat72;4794441]
vitamin D and Ferritin levels were low (18). I just started taking Floradix (iron and herbs) liquid supplement and dosing myself with ferrous Gluconate (which is supposed to be better for your stomach). I will tell you if I feel a difference and continue to pray for all the people out there like yourself and I that are not getting listened to and taken advantage (there are quite a few) of by the one's we count on for help. If you all have any advice for me that would be great.
Symptoms:
Anxiety
Muscle aches
Depersonalization –foggy
Headaches
Neck hurts, tight muscles
Hands ache and spasm
Low sex drive
Eye vision seeing spots or floaters
Out of breath when over exerting myself
Restless legs
Some insomnia not much thank goodness because that can me a person crazy.
…who wouldn’t be depressed right.
Wildcat[/QUOTE]



I hope you are also taking vitamin D...and not just 400 IU but a therapeutic higher dose.

as for floradix, I think it has too little iron in it but again if you are not in a hurry, then it'll work over some time.


it is individual but just fyi, with a ferritin of 6 (and borderline low HGB) I had the following symptoms from your list:

muscle aches (only with/after exertion)
tight muscles
hands ache
restless legs
lower sex drive
a bit out of breath(well not really significantly and it happened rarely, but I'm more trained than the usual sedentary person..)


what I did not have:

anxiety
eye vision issues
insomnia (I was oversleeping, the total opposite of insomnia)
spasms


plus I had some that you did not list:

muscle weakness
irritability
concentration issues (not exactly brain fog but some mental tasks were harder)
weird muscle sensations (though not spasm and the sensations were not strong)
fatigue waves (energy level was fluctuating though)


these all resolved within 2 months after taking iron. (a load more iron than what's in the floradix stuff)


how was your hemoglobin and hematocrit?
[QUOTE=rah19899;4677125]For the past five years, I have felt like absolute crap. When it first began, I was given a blood test and was told my iron and hemaglobin were fine but my Ferritin was at a 6. I was prescribed iron pills but had to stop taking them because they made me so sick. Two years ago, I was put on birth control because of ovarian cysts. I haven't had periods since but my symptoms haven't changed.

I feel tired all the time. I will get a full night of sleep, be up for a couple hours, nap for three or four or five hours, then go back to sleep for twelve. It isn't normal. My joints all hurt, I am constantly dizzy and I get short of breath when I try doing anything even semi-strenuous. My vision goes blurry sometimes and I have a hard time concentrating and remembering things. The longer this has gone on the worse my symptoms seem to get.

From test to test, the only common denominator has been my low ferritin. After five years and putting a stop to my periods, my level has only gone up to a 12 which I am told is on the low end of normal. The first dr told me to "eat some spinach." So, I went to see a hematologist and she told me essentially that I'm crazy and to take some multivitamins because my ferritin can't be causing any of those problems since my hemaglobin and blood iron are fine. I told her that I've been reading up on it and even a 12 for ferritin is NOT ok. She said to wait 6 months and have the levels rechecked. In her words, "You've been dealing with it for 5 years, what's another 6 months?" Not only was I insulted but I'm frustrated. I can't keep living this way. I'm 21 and I feel like I'm 80. I want to be able to have fun and go out without feeling like I've been hit by a train or that I haven't slept in a year.

Does anyone have any advice or can anyone recommend a Dr in MI who knows at least something about low ferritin?[/QUOTE]


[QUOTE=rah19899;4677125]For the past five years, I have felt like absolute crap. When it first began, I was given a blood test and was told my iron and hemaglobin were fine but my Ferritin was at a 6. I was prescribed iron pills but had to stop taking them because they made me so sick.


Does anyone have any advice or can anyone recommend a Dr in MI who knows at least something about low ferritin?[/QUOTE]



if all you want is get your ferritin up, then forget about doctors, you can handle this yourself - you should just experiment to find a supplement that does not make you sick. which ones did you try before?

of course make sure the dosage is not too low either, as long as you can tolerate it.

also, "fine hemoglobin", is that in the middle of range or borderline low?!





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