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  • Ferritin Level of 2 !!!

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    Old 12-01-2007, 02:16 PM   #1
    Tina72
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    Smile Ferritin Level of 2 !!!

    Hello. First time poster......I have a few questions I'd like to put out there for anyone who could answer.......
    I am a hard working, health conscious, good eating 35 year old woman and have been feeling like complete garbage for about 3 years. It got to a point that I could not live a normal life. I was EXHAUSTED all the time, always out of breath, had no energy, chronically constipated, hair falling out in clumps, depressed, had debilitating brain fog, always weak, severely heavy periods and passed large 3 and 4 inch clots, and had no interest in my the activities I normally loved.
    I went to so many doctors over the past few years, and they would tell me I was fine, slightly anemic, with my hemoglobin ranging from 10 - 10.5, so I would take iron for a few months, and never feel any better. They only prescribed me birth control for the periods and then even suggested it was mental and gave me prozac, which I did not take because I knew deep down it was PHYSICAL, I was not depresed, just sick. I got to a point that I had no life any longer..It took all the energy I had to go to work, then I would come home and lay on my couch and fall asleep.
    Then I got to a point where I HAD IT !!!! I wanted my life back . I had gone to so many dr's (gyno, gp, gastro, nuerologist) and I finally made an appointment with a decent endocronologist who took the time to sit down and talk to me and really listened. He took 7 vials worth of blood. He tested for things other than the standard CBC and basic TSH that other doctors tested for. The results showed that I was anemic, Hemoglobin level of 8.9, and my ferritin level was 2. My 'sedementation' TIBC rate was 3 ???? (IF that sounds right). Additionally, when my T3 / T4 was checked, I showed to have levels that were off, indicating a thyroid problem. This was 2 weeks ago.

    He prescribed me Trinsicon , which is an iron / B12 supplement with intrinsic factor (what that is, I have no idea) and Armour thyroid. And I have lived the best 2 weeks of my life. I feel energetic, I can think again, I am motivated, I am able to walk up the stairs without almost passing out..... I feel like I woke up out of a 3 year nap..........I feel like I have my life back !!!!!

    So here are my questions, for anyone who knows medical information....... Could my periods alone have caused my iron to go down to a 2 ??? Could there be other causes ? How come doctors didn't previously test my ferritin ? How long will it take to get my ferritin levels back up ? Did anyone ever hear of Trinsicon , and what is intrinsic factor? Do ferritin levels that low require me to get iron infusions intrevenously ? Should I ask the doctor to give me iron infusions ? I have lost so much hair.........when will it grow back ? And most importantly, how long will it take for my ferritin levels to get to normal ?

    The lesson I have learned from all of this is that we need to manage our OWN healtcare......... Most doctors only prescribe the basic blood tests, and do not bother to listen .........They are so quick to assume it is mental and your are a hypochondriac........ I blame the loss of the pasta 2 years of my life on doctors that did not listen . So, if anyone has any answers, I'd really love to hear......

     
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    Old 12-01-2007, 03:39 PM   #2
    PiaSava
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    Re: Ferritin Level of 2 !!!

    I only know there is a connection:

    Hope this helps some..

    Pia

    Last edited by moderator2; 12-01-2007 at 05:03 PM. Reason: disallowed website

     
    Old 12-01-2007, 06:39 PM   #3
    Audrey-B
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    Re: PiaSava

    Hi Tina and welcome to the boards

    I can't answer ALL of your questions, but with so many people on this board who have had a variety of experiences i'm sure someone can help you with the more complex queries you have. Basically, rest in the knowledge that so many of us have experienced either all that you have experienced or at least a fair portion of your experiences.

    It took me 6yrs to find out and make connections between my symptoms and the causes and i didn't find out anything from any gp which was worth sharing on any healthboard!! The things of benefit i found out have been through my own research and through this healthboard. I started over on the 'hair problems' section of the board as that was pretty much the only symptom i had back then. I blamed it on the sodium lauryl/laureth sulphates in shampoos, my doctor blamed it on stress, i saw a dermatologist who said i had a very healthy scalp and healthy hair folicles, my diet was good, i didn't smoke, only had the odd glass of wine every so often, i used to exercise moderately. My instinct was that something was very wrong, but after doing blood tests my gp would simply say "everything is fine". I was clueless as to iron and it's low effects on the body and i only learnt about that in the 'hair problems' section of the board. Finally i changed doctors as i moved to a new town and by this stage i was experiencing excessive tiredness. Simply eating breakfast wore me out and i would have to lay down to gather up the energy so that i could change my clothes. This was when i found out my ferretin was 8 so i hate to imagine what people with a lower ferretin are going through.

    That was a year and a half ago and earlier this year i declared that something had to be done about this hair loss business. I now had a little more energy due to taking an over the counter liquid iron supplement, but i still didnt feel 'normal'. After being poo pooed by gp's regarding info i had found via my research, i then went on the hunt for a Trichologist (hair/scalp specialist). On the phone i asked him a few what i thought were 'trick' questions and he passed my little test and i went to see him.

    My ferretin has moved up, ever so slowly, but i'm feeling so much better. Still experiencing the hair shedding, but that wont stop until the ferretin gets much higher. My doctor and most educated doctors will tell you that ferretin needs to be 70+. Now keep in mind that we are all individuals and there is a possibility that your hair will improve at eg: ferretin of 40 or 50 , but some of us might have to push it up to 70. You wont see results the moment your ferretin hits that magic number. What will happen is once your ferretin reaches the right figure for your hair growth, you will have to stay stable at that figure or higher so that hair will stop its shedding and then will start it's growing cycle. This can take 3 - 6 months and in some people up to 12 months. Some people are fortunate enough that their ferretin has increased quite quickly with supplements, whilst the rest of us are doing it one step at a time and it's a slow process. Some of us have even gone forward on one blood test, but by the next blood test we may have gone backwards a little. It's really a wait and see game. But the moment you start taking iron supplements you wont see results in a few weeks regarding hair. Hair is the first to often suffer due to low iron and the last to see results as our body views hair as a non essential organ in the scheme of things. If you do see any results, the first ones might be a little more energy. Any additional iron stores go always firstly go to bone marrow and other key organs along the way, while energy, hair/skin/nails get it last.

    Iron is a strange thing b/c it hasn't affected my nails, but has affected myhair, while my friend is the opposite and her nails are like paper with very bad ridges and her hair is nice and thick. She eats poorly and can't be bothered to cook for herself so that explains her situation, while i cook and eat fresh foods and do all the right things and my iron is rubbish.

    One other thing i did learn from visiting this Trichologist is that the years of low iron have affected my thyroid and now it's improving as my iron improves, my vitamin D was lower than the lowest figure recommended on the blood test results as was my iodine, my zinc was low but not extreme. With the zinc test, i looked ok on the serum zinc, but later when he ordered a red cell zinc test i was actually low. So at the end of the day it's a matter of getting everything tested, but knowing what sort of test to have as clearly with some things you can appear normal in one type of test and low if they do a different form of test.

    I'm sure you will find lots more info on this board and there will be others who can answer more of your questions or share their personal experience as it will vary from person to person. All the best with your recovery process

     
    Old 12-01-2007, 07:05 PM   #4
    mbbasketball
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    Re: Ferritin Level of 2 !!!

    Hi Tina,
    Glad you are feeling better. Yes you need to rule out all possible cause of your low ferritin and hgb levels. Your period could be a cause, but also your thyroid. Your TSH should be below 3, that is the new standard. But you may need to be around 1 TSH from what I hear for you to feel really well. Have your cholesterol also checked. People who are hypo also have high cholesterol levels.
    My hgb and ferritin was almost like your almost three years ago. I have since then been getting IV iron. I was given a shot, can't remember what to jump start my hgb the first time. Your hair lost can be caused by both thyroid and ferritin levels being low. Your ferritin should be around 70 for healthy hair. And yes, once all your levels are back to normal, your hair will grow back.
    You may need to go to a gastrologist to make sure you do not have problems there. I had 15 ulcers caused by H-plyori bacteria which explained some of my blood lost. Also, I still get very heavy periods. All my doctors suggested that I get a hysterectomy. But I rather not do that unless it is the last resort. I am nearing menopause, but you are not even close by your age.
    I do not know why most GP do not take ferritin levels seriously. They think as long as you are in the normal range, things are ok. But they are not if you are having symptoms.
    Like is said, I have been battling low ferritin and thyroid problems for almost three years. So, if you need any advice about treatments, I can try to answer your questions. My hematologist tries to keep my ferritin level above 50 so that I do not become anemic.
    If you could post your lab results with the labs ranges, that way others can give you more informations.
    Sorry that I can not anwer your question about your meds. I do know lots of people get better results on Armor than Synthyroid. Do you have Hasimato's thyroid diease. You should know by your TPO test results.
    Hang in there, the road to recovery will be long.

     
    Old 12-01-2007, 08:46 PM   #5
    FLFLOWERGIRL
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    Re: Ferritin Level of 2 !!!

    Quote:
    Originally Posted by Tina72 View Post
    Hello.

    He prescribed me Trinsicon , which is an iron / B12 supplement with intrinsic factor (what that is, I have no idea) and Armour thyroid.

    Intrinsic factor is a protein in the stomach that is necessary for absorption of B12.

    Could my periods alone have caused my iron to go down to a 2 ??? Could there be other causes ?

    In my case the doctors say that it WAS my heavy periods that caused my Ferritin to go to 2 and my Hgb to 8.6. I had an ablation and also had 7 polyps removed at that time.

    How come doctors didn't previously test my ferritin ?

    It;s just something that MANY doctors do not do i guess because it is not standard but should be. I think they are too fast or uneducated but surely they do know about Ferritin.

    How long will it take to get my ferritin levels back up ?

    On iron supplements, the right amount of high dose iron, up to a year.

    Did anyone ever hear of Trinsicon , and what is intrinsic factor?

    Never heard of Trinsicon but it may be a generic of something more common. Intrinsic factor is naturally present in the stomach but some people are lacking this and it leads to a B-12 deficiency.

    Do ferritin levels that low require me to get iron infusions intrevenously ?

    That is up to your doctor, they are all different. They were going to infuse me but changed their minds when I showed that my Hgb was going up ever so slowly. As long as you respond well to supplements they usually don't infuse you.

    Should I ask the doctor to give me iron infusions ?

    I would not but that is my opinion. It can be risky and side effects are not so nice for many people. Some people have little or no problems with it. I would use the search box at the top of the page and read other/many posts on this subject.

    I have lost so much hair.........when will it grow back ?

    That is also different for everyone. When I reached a 20 Ferritin my hair slowed down and went back to normal lightly shedding, like for the last I don't know how many years.

    And most importantly, how long will it take for my ferritin levels to get to normal ?

    Up to a year.

    The lesson I have learned from all of this is that we need to manage our OWN healtcare......... Most doctors only prescribe the basic blood tests, and do not bother to listen .........They are so quick to assume it is mental and your are a hypochondriac........ I blame the loss of the pasta 2 years of my life on doctors that did not listen . So, if anyone has any answers, I'd really love to hear......

    It sounds like you have joined the club. You are so right in saying that we have to manage our own care, you can't count on anyone else to care about you more than yourself!

    If I were you I would have started the iron seperate from the thyroid meds to see how you react to each one. It helps to know how your body is responding. You must really feel good with both meds, I can imagine. I remember when I started my thyroid meds. I felt wonderful like a new person. And for the first time in a long time I didn't have brain fog. Glad that you are feeling so well. Keep us posted! FLFLOWERGIRL

     
    Old 12-16-2007, 08:24 AM   #6
    Beck41
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    Re: Ferritin Level of 2 !!!

    I can relate so well to your story. I am so sorry you feel bad, but glad some medication helped. I had a Ferritin Level of a 1, same symptoms as you. I am a 41 year old female, 2 kids and exercise regularly, mainly running, but not excessive exerciser. I was originally diagnosed in October 2006. I travel so much for work that I had to go on disability because my doc thought I might fall asleep while driving. I was on disability for about two months and multiple tests were run; everything you can imagine. Nothing was found. Oral iron made me too sick so I lost weight. I am about 5'5" and weigh between 105-110 lbs. I used to weigh about 115 lbs so I really haven't lost that much weight, I'd rather sleep than eat because I keep hoping I will wake up one day and be rested.

    The reason for giving so many physical details is to say from all of the specialists that are working on me, many had differing opinions. My internist is a friend (fortunately) so she quickly referred me to a GI doc for a colonoscopy and later to a hematologist. The GI doc swears I have anorexia because nothing showed up in the colonoscopy. My internist thinks he is ridiculous because I have weighed about the same my whole life. Other doctors thought maybe I was exercising too much and concerned about the level of oxygen getting to my brain and told me not to get my heart rate up like I used to do. No running, skiing, basically any physical exercise for risk of losing iron. Some of my friends know about my low iron and there are actually a couple of aquaintances I know of that also have low iron, I don't think as low as ours, and they are both runners with body types similar to mine. I began feeling so bad I was begging for infusions. I have had about 8-12 infusions to date. I began in Jan 2007, one per week, and think they went until April 2007. You know brain fog I can't remember.

    After infusions, I felt great! However, I had two reactions during two separate infusions. I did my infusions at a cancer center and they really watched me for any reactions-not fun. I had energy and was able to be a normal person for a while. My highest ferritin I think was a 92. I have Ferritin checks every 3 months at the hematologist and every month at the internist. My levels began declining as soon as the infusions stopped. I'm just not able to hang on to the iron. I had my most recent lab performed, December 10, 2007. I have a ferritin level now of a 7. I go back to the doctor tomorrow, December 17.

    I wish I had an answer for us. Please get the medical testing done, rule out what you can and monitor your iron. What is strange now is that my hemoglobin is normal, but iron is low. I feel ok and wouldn't have know I had low ferritin without the monitoring. The benefit I think will be increasing the ferritin before I start feeling so ill (like last year) and think monitoring is the most proactive thing we can do after testing.

    I have not missed a single day of work due to low iron since my leave so hope you get to feel better too. I'll post again if I find out anything new tomorrow.

    Take care

     
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