Hey girls I'm back....with MAJOR UPDATE!!!

Discussion in 'Success Stories' started by elisabeth, Nov 25, 2014.

  1. elisabeth

    elisabeth Active Member

    I am the original poster of both "I finally did it, no more hair loss" and "holy moly ferritin levels skyrocketed". If you have not read these very popular threads I suggest you do if you want to fully comprehend this saga....this long long saga!
    I have not come to this forum since last winter - when hair TRAGEDY struck. I did not want to tell you what happen because so many of you depended on me for hope and I was not going to disappoint you. My plan was to stay away until I had answers and now, many months later I do!
    For all of you who know my story so well, I begin this chapter where I left off last February :
    So my hair was amazing last October November December and January. If you remember i tripled my cocktail because higher was better, more was needed since we all read that our levels MUST be over 100 for our hair to never ever ever fall out again...so I was taking it 3x daily starting in December....I tested end of January and my ferritin was 116. I was so happy that I posted and shared the good news with all of you. Yay! Well 2 weeks later it was all gone. I got my hair colored February 10th and I had beautiful red ringlets. On the 12th I noticed shedding in the shower....that was odd...over the next 3 days I saw more shedding. Then on the 17th I took a shower and it was all gone. All the gains I made from October through January was gone.
    Let me tell you I have not cried like that since I was a child. I blamed the hair dye, I blamed switching to liquid ironsmart from my pills, I blamed only taking the liquid iron and not continuing with my Lysine and vitamin C...what the hell just happen to me??? It happen so fast, it was awful to go from SO much hair to sudden loss that fast. I had battled this for 13 years and won, or so I thought.
    I went back to the pills and threw out the liquid iron. I went back to taking the cocktail 3x a day
    I tested end of May 2014, my ferritin was 172 and flagged high. I had really overdone it. This is when I had my lightbulb moment...because I WAS NOT GIVING UP....I decided to go back to ground zero. Ground zero was when I first got my ferritin checked in the spring of 2013 and it was a 31. I had never taken any supplements at that point so I was a clean slate. And that's where I headed. I stopped all supplements, zero vitamins and I was going to check my iron levels every few weeks until I hit 31. Well I was dropping 1-2 points a day on average and I was getting impatient so I decided to donate blood in August and that did it! I got tested and yippee I was 19. By the way it's important to note:

    The results when I FIRST had success in October 2013 were:
    Iron serum 47, saturation 15 and ferritin 59. I consider this MY OPTIMUM ZONE.
    The results right before I had my hair tragedy were:
    Iron serum 116, saturation 23 and ferritin 116. These numbers I now consider MY DANGER ZONE.

    MY PLAN, MY THEORY: I have a sweetspot for my iron levels. based on my initial success last year, my ferritin was 59 when my hair stopped shedding almost entirely. So that was my goal; to get back to 59ish. My plan was the very day my hair loss noticeably decreases I will run to the lab to get tested and continue testing monthly. I knew it was VERY important to test every 4 weeks so I had a complete record of my levels. I also kept a hair diary so I could cross reference should I need to.

    So its September 4th and my ferritin level is 19 so it's now time to test my ground zero theory.
    I did exactly what I had done almost exactly one year prior....took my cocktail 2x daily and waited...in about 10 days the shedding finally slowed down. I knew I was on the right track. I wanted to know what my levels were at this time too so I tested and my results were:
    September 23rd- ferritin 38, iron serum 42, saturation 14%.
    Every week that went by my hair shed less and less but still not to the point where I felt it was
    "Good enough", I was kinda close but not quite there! I was still shedding more than what made me comfortable and confident . I wanted the best I could be so I waited. Then I tested October 29th and UH OH my ferritin was 76, serum 72 and saturation 24. TOO CLOSE TO DANGER ZONE!!
    I dropped to taking cocktail only once per day and tested November 13th and even taking it only one time a day my levels still went up to ferritin 97, iron serum 61 and saturation 20. WAY TOO CLOSE TO THE LIMIT.
    During this time I got a little scared because the shedding picked up a little bit and I had to stay positive, I had to win this damn war so I yelled at myself to hold it together soldier!!
    So I decided to take my iron cocktail every 3rd day. Within 7 days all my fears subsided. Overnight my hair looked so shiny so healthy and the shedding stopped. Today is November 25th and today's the day I consider my OPTIMUM condition. So I'm testing tomorrow morning and I'm curious to see what they are. I will continue with the cocktail every 3 days and I will also test every 4 weeks and I will not stop testing until at least 1 full year has passed where I have no hair issues. Only then will I feel confident enough to stop being concerned.

    What I have learned is quite a lot. I am a unique individual and what is right for me may be way off for you. I also learned that when iron skyrockets, copper plummets. So since starting my ground zero plan I wear a copper bracelet I bought from Amazon- sometimes I wear every day all day, some days for a few hours, some days I forgot to wear it but I believe it helped in balancing me out. The tarnish it leaves on your skin is good for you if you are deficient. What's one of the symptoms of low copper? Hair loss. I especially learned that too much of something is not necessarily better, in fact it could be way worse for you. I learned that what we read online can have good intentions but be bad information. Like "for hair loss to stop your ferritin must be over 70" - maybe for her, but maybe for you it has to be around 50 or 90 or 120.
    So this has all been a trial and error for me. I pray I have truly solved my hair problem once and for all. I will post when I get my blood labs back on Friday.

    I know I disappeared for a while but I'm back now to help if I can. I had no answers to offer you when my hairs all decided to commit suicide on the same day but now I can hopefully help again. I'm here for you if you need me girls!! Happy Thanksgiving :)))
    Needlehole, Trude and Ponygirl like this.
  2. elisabeth

    elisabeth Active Member

    It's important to note that on the non iron days I still take my vitamin C with my Lysine twice daily. I truly believe that the Lysine is a crucial element in my success.

    Also...I find it interesting that during my first run of hair success I had almost zero hair loss in the shower or when I brushed my hair for the last 6 weeks of that period. Maybe that was not normal for me either. Maybe that was a sign. It's normal to have some shedding and have the phases that most people go through. What I thought was a very positive thing ended up possibly being a huge warning sign.
    I think I'm going to spend the next few months paranoid! Oh boy I may have hair PTSD;)
    Ponygirl likes this.
  3. Ladydi

    Ladydi New Member

    You are so very brave to post your experience. We learn from both good and bad experiences. I do find it interesting that most of us that are experiencing tremendous hair loss all have some sort of ferritin issue. My ferritin was an 8 requiring an infusion 7 years ago. I noticed a small bald spot in the back of my head but just dealt with it since I had a full head of hair. Then I started going through peri-menopause and decided to have a Mirena put in in lieu of an ablasion. A month after the death of a loved one, the severe hair shed began. I had the Mirena removed as I read the progestin in it causes hair loss. The severe shed did not stop. In the meantime, I had my hormones tested and was in full blown menopause. I went on bioidentical estradiol and progesterone and that to this day continues to be a battle. I also had a patch of scalp cancer removed from the back crown of my head leaving permanent hair loss in that region. Ughh! The only thing I haven't addressed is the ferritin. I know my number All we can do is hope and help each other the best way we know how. I guess in the scheme of life we are healthy otherwise. And hey, if we end up wig bound, I think all us girls should meet up and go together! There would be no better support for sure!
    Ponygirl likes this.
  4. elisabeth

    elisabeth Active Member

    thanks ladydi! just so you know I always had regrowth, it just would not stay in past 3 inches. and what I found so interesting was within a week or two of working my ground zero plan and being back on the cocktail my hair plumped! I saw it in the sink and it was thicker in diameter than it had been since it all fell out back in February. so for me, the iron is so crucial as I have no other symptoms. I am a HUGE red meat eater, it's just for some reason I don't absorb it. I wish I did know exactly why my tragedy happen; was it the speed of the rise of ferritin? did it cause an imbalance with the copper and the speed had nothing to do with it? I will never probably know and if I did it would ease my worries about it happening again. today, my ringlets are back and only 4 weeks ago I still looked bad. my body reacts SO FAST to supplements it seems. I really need to be careful and tread very sloooow! if I could check my iron levels daily I would. like a diabetic. I wish someone out there had my experience so I know I am not the only one with this crazy ferritin thing. today I take a shower and I lose maybe 30 strands. its so wonderful I never want to lose this feeling of hair confidence. but I am way too skittish to be confident after having it last Fall and then losing it all in the Winter. yikes!! day by day...
    Ponygirl likes this.
  5. Ponygirl

    Ponygirl Member

    Elizabeth...in your initial success...did your hair return to it's prior original thickness/density? I'm concerned that my hair may not return to the condition/thickness it was pre-shed.
  6. elisabeth

    elisabeth Active Member

    yes it did, in fact it was way better than it ever was!
    Ponygirl likes this.
  7. elisabeth

    elisabeth Active Member

    okay I have more updates!
    on 11/28 my labs came back Ferritin 72, iron 57, saturation 19...all seems good,right?
    BUT...on 12/3 my hair shed just a little more than the previous weeks so now I think my body needs a more steady flow of the iron and taking it every 3rd day made me go too low. so I started taking 1/2 my iron every other day and within a few days the shedding stopped and it's been just perfect. i got my labs tested yesterday Friday 12/12 because i feel that yesterday i must have been perfectly balanced so i need to know my results and i bet my ferritin is in the 60's and im close to my believed optimum sweet spot. i will get the results Monday.
    PLEASE NOTE: every single day i take the rest of the cocktail (at least 1,000 mg of Lysine along with 1,000 mg of vitamin C). i firmly believe if i omitted this part i would have no hair. AND i wear the copper bracelet for a few hours at least 3-4 x a week to keep the chemicals balanced. my normal routine is 1000mg of Lysine and 1,000 of C together in the morning then a 2nd time of 500mg Lysine and 1,000 C in the afternoon.
    Ponygirl likes this.
  8. EllaBella30

    EllaBella30 New Member

    Hi e,

    Have been reading your posts avidly. What a roller coaster - you poor thing. I actually wear supplementary hair after 5-6 years of hair loss, but I guess I never completely give up on the idea of growing it back and want to see if I get any luck from building up my iron levels.
    I'm sure you know that hair is in a cycle, right? It goes from it's growing phase to its resting phase. This means that on any one day your hair is responding to biological conditions three months previously. or do you not believe this to be the case? Confused!!!! Please explain, ella xxxx
    Ponygirl likes this.
  9. CaraMA

    CaraMA New Member

    Hello Elisabeth,

    So happy to see your posts and learn from your experiences. Could you tell me a little about your knowledge of the growth cycle with respect to hair? (sorry if you already answered this). Is it your understanding that every hair on your head goes through the cycle at exactly the same time or is each hair an individual so to speak? If I interpret your experiences correctly, I get the impression that you don't want your hair to completely not shed because that would be a sign that something is not working correctly, right?

    I would also like to learn more about your ferritin levels - mine was at 7 when I realized my hair was falling out like crazy. Aside from that, two months before the major shedding, I had a bad case of acute bronchitis right after strep throat. So, I think I've had a really bad case of TE which lead me to discover that I'm not all that healthy. I've started some of your famous cocktail but I'm wondering what you think specifically cause your ferritin to rise too quickly. Could you let me know please? I'm taking two Feosol Ferrous Sulfate a day (each has 65mg) because it doesn't cause any stomach distress. I was checked about a month ago and my ferritin had gone to 18. I don't think that seems extreme and I wonder if you think that I should stick with this. I'll have my blood labs done on Tuesday and I'm going to ask them what my saturation is thanks to your informative posts! I was mildly anemic but that was gone immediately when I started the iron. I'll double check that level too. Any other levels that they don't normally check that you would recommend? I never knew about the copper so I'll see what they say.

    Are you taking biotin? What about Viviscal? I haven't seen anyone post about experiences with that but I've started a new job and haven't had an opportunity to explore too much of this site.

    I'm so happy to see your educated and thoughtful posts and I am eager to see more of your journey. Thank you!
    Ponygirl likes this.
  10. elisabeth

    elisabeth Active Member

    hey ellabella & cara! you both mentioned hair cycles and I know little about them in general just my own experience. which was when I did my "ground zero" plan, within a few weeks of being devoid of ALL supplements and then being back on my hair shedding slowed down noticeably. I do not believe that MY hair is reacting to anything "months" ago but more like "weeks" ago.
    I do think that losing NO hair is not normal for ME. before my iron imbalance showed itself I always had a lot hair shedding in the shower and throughout the day but never to a point where my hair lost it's volume. so for me, I shed hair. and then when I did not lose ANY during the last phase of my first run at this, I was happy only to have the tragedy happen...so for me, losing nothing is a danger sign. for you girls it may be normal if it ever was your "normal" in the good days when hair problems were not present.

    CARA, if you read both of my original posts on this forum ("FINALLY, NO MORE HAIRLOSS" & "HOLY MOLY FERRITIN SKYROCKETED" - both under "success stories" forum) you will see that I was under the false impression that I had to be over a 100 ferritin in order to have perfect hair so I upped my cocktail to 3x a day. within 6-8 weeks or so all my hair fell out!
    I have also posted many of my lab results. when im lower than 40's for ferritin and over 80's is what I consider my danger zone. also I want my saturation to be around 15%. so my goal is to maintain whatever I am right now b/c my hair is growing faster and not shedding. (just the normal amount.) you would never know I have hair issues, which I find amazing since it was only September when it was still short and my scalp was noticeable.
    I got blood drawn yesterday so I will have the results tm and will post them here...I predict ferritin in the 60's, iron serum in the high 40's and saturation 15%.
    if I am those numbers, then I will remain on my latest cocktail of 1/2 an iron every other day. BUT daily Lsyine/C!! don't ever forget that part :)
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  11. elisabeth

    elisabeth Active Member

    cara, read my very first post to see that I had no luck at all with ferrous sulfate - it was the fumarate that was great for me.
    IMPORTANT... I cannot stress enough this: if I did not get my labs done every 4 weeks last year and now every 2 weeks along with a hair journal I would not be able to see exactly where I went wrong. its like having a map of my iron levels. if I did not have these papers to look over I never would have my success b/c I would be flying blind.
    Ponygirl likes this.
  12. elisabeth

    elisabeth Active Member

    WTF??? im taking only 1/2 an iron pill every other day and ive gone way up.
    ferritin is 102, iron 71 and saturation is 22%.
    this is so close to what I think is my danger zone. now what? I guess go back to 1/2 pill every 3rd day and test in 10 days. I want to stabilize and I have to figure this out so I can remain in the 60's for ferritin. at least this is where I think I need to be.
    I just got my period today so hopefully I will lose some points this week.
    ferrous fumarate is the strongest of the irons, maybe I should try the next strength down the list.
    any suggestions??! i have about 1,000 left over sulfate pills but those worked so slowly for me during the 1st try at this last year that i gave up on those being useful for me. fumarate spikes me, sulfate too weak...what do i do girls? i need to think about this.
    Ponygirl likes this.
  13. elisabeth

    elisabeth Active Member

    i just decided what to do next: 1/2 iron every third day and doing this for 4 straight weeks but testing every 14 days. i will report back!
    Ponygirl likes this.
  14. Ponygirl

    Ponygirl Member

    Glad for your updates! I think I need to go in for lab work this week to see where my ferritin level is now. It was 57 on 11-20...and doc said to come back in Feb...but that I could come back around Christmas if I wanted to do another mid-check. She left this up to me. I believe I should go do this now. I'm seeing new growth...the 'halo-effect' of new hairs sticking up...so this is positive. However, I'm still shedding more than I consider what is normal for me (pre-anemia). After reading the new posts here from CaraMA, I should mention that I, too, was VERY sick in May and June...just before I started having the massive TE shed. I was diagnosed with ear, sinus, and throat infections and was placed on oral antibiotics (which did NOTHING), so I presented again to doc, and was given an injection of a powerful antibiotic AND a steroid injection. I wonder if those meds had any effect on what happened to my hair...in addition to my low iron levels? I was sick for almost eight weeks with those infections and had the most insidious cough I ever had. I think I had slid into pneumonia (but was not diagnosed as such by doc....just what I believe). It was awful. Then, I had a death at work of my CEO (more stress and drama on the work-front). I had so many things happening (including VERY heavy peri-menopausal periods), that I cannot pinpoint to any one specific cause for my shed (neither can my doc...and I had to educate her on the iron/hair loss correlation...she had no clue...but was receptive to learning more about this and how to treat...I'm the 'guinea pig' for the clinic, I think, lol). Anyway, I'll report back when I get my new labs. I remain hopeful that I will get my original hair volume back.
  15. CaraMA

    CaraMA New Member

    Elisabeth, could I ask you which sulfate you were taking and what the actual iron content was? I doubled up mine because the hematologist said it would take me to the levels I want more quickly without overloading my system. I'll have blood labs tomorrow and I am eager to see if I've made any progress. Again, I was at a 7 for ferritin and up to a 18 about 6 weeks later. I don't see any new growth but I have learned that most think 70 is the level needed for new growth.

    Ponygirl, can you point me to your symptoms? I can't seem to find your original posts. I can tell you that illness, stress, low iron stores seem to have all created my perfect storm for TE. It seems that diagnostically, physicians can only guess what caused the TE. Ponygirl, can you tell me what antibiotic you were on? I had a bad reaction to one back in March and I was going to see if that antibiotic has any strong correlations to hair loss. (I was then sick again in April/May - so sick that I drove myself to the ER and was given IV liquids) Also, when did you start to see new growth? And could you tell me a little about your shedding? I am pretty certain I started in June (about two months after my acute bronchitis) and my family noticed the hair loss in July and by August, I was in a panic. I don't think I have any new hair growth yet although I am trying so hard to stay optimistic. I shed daily but I really don't know what is abnormal - I used to have such dense, thick hair that shed every day. Now, I panic when one strand falls - not a good reaction when you are trying to calm yourself so that you can see if new hair is going to grow!

    And, Ponygirl, like you, I have found that so many doctors are not entirely aware of the iron-hair loss correlation. This surprises me.

    Elisabeth, you are so smart ... I am certain you will find the perfect balance for your body. I await your updates. Ponygirl, sorry I can't figure out to find your information but I am eager to hear more about your experiences.

    By the way, what seems to be the optimum saturation?
  16. CaraMA

    CaraMA New Member

    Elisabeth, what are your thoughts about my ferritin level only going up to 20? Is that why you stopped the sulfate - slow progress? I started at 7 in about august/early september and I'm only at 20. I was 18 in November. I'm trying to be positive - I'm still going in the direction I had hoped. And, perhaps the tortoise has the right idea??

    The new PCP yesterday told me that she would not anticipate new growth until 9 months after the initial shed = i.e. wait for the hair cycle to complete the cycle. Any thoughts? I think my big shed started June or July. Feeling depressed. :(
  17. Ponygirl

    Ponygirl Member

    Hi, Cara...so sorry I haven't been able to get back here...my work is so busy and mostly I have to use it for posting because my internet at home is unreliable. By the way, my name is Alice...I can't figure out how to change it in my profile here! Forgive me for not posting detail now, as mentioned, my work is pressing. However, do know that I will respond as soon as I can to all your questions. I will have to look up the antibiotic (or call my clinic). I believe our time frames on this are very similar....and similar causes, too...illness, stress, and low iron. I can tell you quickly that after I found out about the low iron and hair loss correlation...and that, by the time you have hair loss you are quite anemic...I had all of the symptoms of low iron and didn't realize it was a low iron level that was literally killing me. It was in the summer when I began shedding an abnormal amount. I will also list the supplements I'm taking in addition to the 'iron cocktail'. Hang in there...I know we'll get our hair back!
    CaraMA likes this.
  18. Ponygirl

    Ponygirl Member

    Cara, here is my first post from October...it doesn't have all the details, but you can see where I believe my iron loss started:
    Hi, all! My name is Alice and I've been experiencing hair loss/extreme shedding for the past several months (TE, I assumed, from stress, after my first sweep of research). Then, I stumbled upon this site and read Elizabeth's story and others about the low iron connection! It was my Aha! moment! I suffered a dysfunctional uterine bleed a year ago, September...and I know this is TMI, but not only was it a heavy bleed, I was passing hand-sized clots of blood...made a trip to the ER because I had never had any bleeding occur like this in my life. I should note here that I'm almost 55 and have had regular periods most of my life, a tubal many years ago, so no BCPs, and I suppose I'm in peri-menopause because I've been experiencing hot flashes, etc, for the past year or so. Back to my story...Anyway, blood work at the ER was good and the pelvic exam there indicated there was nothing left of the lining to come out. I was sent home with instructions to see my gyno as soon as possible. I saw a gyno within four days. An exam was performed, a biopsy was taken (which was negative), and consult with him indicated that he agreed that I would be fine and all was part of this menopausal stage. Not him, nor the ER physicians once mentioned that I could be depleting my iron with this heavy of bleeding. So, throughout this past year, I had about three more periods of extremely heavy bleeding interspersed with normal ones. As the year wore on, I was becoming more and more fatigued...with shortness of breath and joint pain...feeling as if I were 94 instead of 54. After reading this forum, I went to my GP two weeks ago for blood work, explaining that I thought my hair loss was possibly correlated to low iron and described the bleeding episodes to her. Well, I think that I, like Elizabeth, may have my 'smoking gun'...my iron saturation was 19 and my ferritin was 26. I have no idea what my levels were prior to this past year, as I don't even know if any doctor had ever taken them as part of blood work. I have begun the 'iron cocktail', completely revamped my nutrition, and am looking forward to my next ferritin and iron check, of which my Dr. has me scheduled for blood to be drawn on 11-20. In the meantime, I continue to shed...a lot. My ponytail is half of what it was just a few months ago. It is depressing, indeed. I will post my iron results and keep following and supporting all of you. Let's hang in there together! Thanks for listening!
    CaraMA likes this.
  19. CaraMA

    CaraMA New Member

    Thanks for your messages, Alice. When you have time, I'd like to hear your progress to date. Which iron are you taking and when did you start? 57 seems like a good jump! Have you noticed regrowth? I feel dejected that my levels have not gone up significantly. A lovely doctor today told me to find a Functional Medical doctor who will assess why my body isn't storing and absorbing the iron. I'm going to go back to research.

    Looking forward to hearing more of your experiences, Alice.
    Ponygirl likes this.
  20. Ponygirl

    Ponygirl Member

    Cara, Here is another of my posts from Elizabeth's 'Ferritin Skyrocketed' thread. This will give you more history:
    It's hard for me to pinpoint the exact time when I noticed a significant increase in my hair shedding...but, it was probably around April or May of this year. I waited until September to make a Dr. appt., which at that time, the hair loss was really concerning me. What really scares me is that - had I not had such a huge hair issue occurring - I may not have made that Dr. appt.! After all my hair loss research...and discovering this forum and Elizabeth's story of the iron/hair correlation...that is when I knew I had to see a Dr. to get my iron levels tested. I was dying a slow death from iron deficiency anemia!
    I just got back from my Dr. appt. today. More blood was drawn to check my ferritin level. I've been on the iron cocktail for approximately one month and I added the liquid IronSmart about three weeks ago. I believe the IronSmart is going to be the key to getting my iron level increased. Perhaps I'm taking too much; but, I don't think so. I'm determined to get this shedding stopped and regrow my hair. I believe my shedding has decreased some...today, including a wash, I probably only lost 50-60 hairs. For all practical knowledge, that is within a 'normal' daily hair shed. However, that is not normal for me. Before the anemia, I only shed maybe 20 hairs per day. I should note that I'm a natural dark, honey blonde, long straight hair, very fine in texture, I'm 55 years of age, and have never colored my hair...and I only have a few noticeable greys. Since this shed has started, I believe I've lost at least 1/3 of my hair, and possibly as much as 1/2. My ponytail diameter is half of what it used to be. I had waist-length when the shed started and I cut off probably 8 inches to decrease any weight to my sensitive scalp. Yes; in retrospect, I had scalp redness in the early weeks of the shed, probably as far back as April. In early September, I experienced the 'creepy-crawly' scalp feeling and a tingling/burning sensation. This corresponds to the height of my hair shedding...approximately 300-400 hairs per day is my best estimate. I did not hand count. I was stressed enough without resorting to that.
    I hope my experience will also help others. I will report back as soon as I get my new ferritin level result. It may be as early as tomorrow evening according to my clinic.
    I mentioned this on another post, but I also revamped my nutrition, have eliminated any use of hair products with sulfates or parabens, I only use shampoo and conditioner (OGX brand) - no other styling products - and, I reduced my hair washing from daily to only twice per week. I also stopped blow drying. I let it dry naturally