Holy moly!!!!! Ferritin skyrocketed!!!

Discussion in 'Success Stories' started by elisabeth, Jan 28, 2014.

  1. Lori2727

    Lori2727 New Member

    Hi there. I'm new to contributing to these type of sites, but I felt compelled. About 7 years ago I was diagnosed with AGA after a scalp biopsy for thinning hair at my hairline. I was given the test results and walked to the door. No follow up or plan of action was even recommended. Fast forward a few years - I've had two children and had your typical shedding after each birth. I didn't notice more than normal shedding up until 2 years ago. I used to have a "infamous" head of thick coarse hair. I would actually complain about it being too thick (oh, if I could go back in time). My entire family is plagued with this type of hair except for my maternal grandfather who was very "thin on top." I have been to the dermatologist who originally told me there was nothing she could do for me, but "in ten years maybe they'll have another treatment." I left feeling horrible. I spoke with my OBGYN PA who told me to "embrace getting older. Everyone has to get their hair cut short and the odds of becoming completely bald are rare." I wanted to break down and cry right then and there.

    I returned to my dermatologist and requested spironolactone for hair loss. She said it would not work for me, but I told her I was struggling with some acne and miraculously she had a change of heart and gave me 50mg per day. She has since increased my dosage to 100 mg per day. It has been a year since the original dosage and roughly 1 month since the increase. So far, no good...I'm shedding like there is no tomorrow.

    This is beginning to effect me in ways I never thought possible. I look at EVERYONE'S hair and it seems like I see balding women EVERYWHERE! I dream about it and feel obsessed with looking for new growth.

    Two weeks ago I added Saw Palmetto, Zinc, Biotin, & Selenium. I was on Metoprolol for Mitral Valve prolapse which I discontinued since a rare side effect is hair loss. I also take natural vegetable laxatives for IBS-C and am trying a FODMAP diet for food sensitivities. My most recent blood work indicated that I'm on the low normal range for Hgb 12.1 and HCT 37.4. Where might I find a ferritin level or would it have to have been ordered as an "extra" test?

    I'm so sorry for the book, but everyone's posts are so helpful. Thanks for any input. :)
  2. khikhob

    khikhob Member

    Hi Lori,
    I am sorry to hear you are having such a tough time. You would need to ask for a specific ferritin test, and that would also include your Total Iron Blood Count which would give you more information about your saturation levels. Iron is a rather complicated thing in that you need several parts to the test to provide a full picture. I have been on IV iron infusions for 3 months, (once per month) and my ferritin has gone from 31 to 237!! However, my saturation is still low. The hair continues to fall at an alarming rate - nearly 2 years now - and is now very thin, which suggests to me that my derm's diagnosis of low-ferritin CTE is incorrect and that I have AGA, despite the fact that there is no family history.
    I hope you get some answers and find a professional who is a bit more sympathetic to the impact this is having on you. Seems that compassion is a bit lacking when it comes to derms and their handling of hair loss.
    All the best, Kate
  3. JennaLynn

    JennaLynn New Member

    Thanks! I have been taking Ferrets, B-Complex, and Saw Palmetto for the past 3 weeks. So far so good...how many times a day did you take this vitamin cocktail?
  4. mariemorro

    mariemorro New Member

    hi i am new here and need some help my hair is thinning but i have been using regain for a few weeks and can see some new hair at my temples which i started to do first last few weeks been using it on the front of my hair and i can see my scalp hoping in a few more weeks it will start to grow but i take biotin but you are all talking about iron which one should i take i havent got a clue but would be happy for any advice
  5. mariemorro

    mariemorro New Member

    hi back again i have also lost hair all over my body and my eyebrows were thinning but regain helping
  6. Chanda

    Chanda New Member

    Just an update: I stopped taking the iron tablets, just because of being lazy and forgetting to take them on a regular basis (that, and I try to not take them around the same time that I drink coffee or caffiene, and then I end up forgetting to take them!). Since I stopped taking the iron, I've noticed large amounts of shedding. Like, handfuls of hair coming out when I shower and wash my hair and comb my hair afterwards. Even some of the new baby hairs that have been growing in when I first started came out. I'm amazed that there's any hair left on my head, from all the hair coming out. So, I've restarted taking the iron tablets, I've been retaking them for just about a week, now. Hopefully the shed slows down or stops altogether, and I'll see some new growth.
  7. Chanda

    Chanda New Member

    Marie, the brand of iron that most the gals here are taking is called Ferretts. It's recommended to take them with a vitamin C supplement, or a full glass of orange juice, plus a L-Lysine supplement. Don't take the iron within an hour or two of eating any dairy products or drinking coffee or tea, because it will inhibit the absorption of the iron.
  8. Spork

    Spork New Member

    Ferritin - 29 ng/mL
    Iron, Total - 148 mcg/dL
    Iron Binding Capacity - 333 mcg/dL
    Saturation - 44%

    Making a super super long and tiresome story short version:

    I've been dealing with diffuse hair loss for nearly 10 years now. I noticed my first shed at 15, but didn't think too much of it until it had happened again 2 years later, except this time it was unreal.

    During this second shedding phase I went to a dermatologist, got a scalp biopsy, blood work done (iron, thyroid, vitamin levels), etc. He said everything was normal, I could use Rogaine (didn't use). The hair loss continued so I started taking iron supplements with saw palmetto and blackstrap molasses after a bit of self research and eventually the hair loss stopped. I wasn't sure if what I was supplementing with had done anything to help the hair loss as this was all new to me, I just knew it worked for some people. Anyway, it eventually stopped, and I stopped taking them.

    Approximately 2 years later and I started massively shedding again. I never took iron or anything else during these phases, and I just saw doctor after doctor after specialist. I would always hear "everything is normal, maybe you're just stressed." These shedding phases would last for 3-6 months, eventually normalize for 3-4 months, then start up once again.

    I have not had a break in this cycle of shedding since. Today, at 24 years old, I am going through a major shedding phase, I'm about 2 months in. I'm not exaggerating when I say that the hair I had before all of this began was so thick, curly, and beautiful. Everyone wanted my hair. Now, I never get hair compliments. I've lost 70% of it. The pictures speak for themselves.

    I wanted to share my story because I was finally able to see FOR MYSELF, my blood work results after requesting every test in the book for hair loss. I was then able to research and research and research. My ferritin level is at 29 ng/mL. While it's considered "normal" (10-154 normal range) it may be leading to my chronic diffuse telogen effluvium. I wished I would have known "normal" isn't always normal, and to look for myself. I stumbled on this thread over a month ago and remember thinking "I wish my cause of hair loss was this simple". This thread got me to go back to the doctor. I'm hoping that by reaching 70 ng/mL I will finally start to see regrowth and I can finally begin washing and combing my hair without it ruining my day.

    However, if it isn't the cause to my hair loss, and the endocrinologist I saw last year was wrong about my thyroid being normal, and the scalp biopsy results were actually AGA, and maybe it's something else entirely, I already bought a Follea as I was about to say "to hell with it" and shave it instead of continuing on with the psychological distress.

    I finally have some hope, I have something to try that seems promising, and I hope this is the answer to my decade long hair loss torture.

    PLEASE look at your test results, don't always rely on your doctor's word of normal, it is the biggest mistake they make. These numbers are just reference ranges, and they may not be your body's range of normal.
    Last edited: Sep 3, 2014
    Ponygirl likes this.
  9. Chanda

    Chanda New Member

    So are you seeing a difference in your hair shedding and any new regrowth?
  10. gabby

    gabby New Member

    elisabeth (and others), I am so happy for you. Your story inspires me. I am 36 and have experienced major hair loss (most notably on the top of my head). I am 16 months postpartum, but the dermatologist and I agree that my hair loss is more aggressive than average pp hairless, and plus it did not get "bad" until recently (when my daughter was between 13 and 15 months old). Anyhow the usual battery of tests proved to be in the "normal" range. Because of your story I specifically asked what my ferritin level is at, and was told 48. I know that is not especially low, but it is not high either. Should I self-medicate and try your cocktail? Do I need to worry about overdosing right away or just check my levels on a monthly basis if I supplement? Any thoughts or ideas would be greatly appreciated.
  11. Spork

    Spork New Member

    No. I just started on iron last Wednesday. I was posting to share my story and how important it is to look at your own test results instead of always relying on your health care provider's opinion of normal.
  12. Featherfluff

    Featherfluff New Member

    My ferritin is very low, its 19. Like you all, the "low but within normal " results were dismissed. How do i know what dosages of what supplements to take? What dosage of each is too much, how do you know?

    Iron saturation is 24, serum iron is 85, my free direct testosterone is .2. But I honestly don't know what all of that means.
  13. KD29

    KD29 New Member

    I wanted to post a quick update:

    In May, I saw a dermatologist who, thank goodness, pointed out that my ferritin levels were low. Most other doctors had dismissed the numbers, but at 34, my ferritin was on the low side. I began feverishly searching for iron related hair loss and thankfully found this forum. After reading elisabeth's success story, I began upping my iron intake. About a month ago, I received a call from my dermatologist that my latest tests reveleaed my ferritin was up to 70 and my overall iron was elevated. I am not sure what my numbers are currently, but I am noticing a few things:

    -My shedding has decreased. Although it's still in excess, I would say it's getting closer to normal shed ranges. Hopefully with levels above 70, I will continue to see a decrease in the shedding.

    -New hair! Although it's a pain for styling, I'll take any new growth I can get. The front and sides are filling in more. Hopefully by the time I get married in March, the loss will be less noticeable.

    I know this is such a painful process, but patience is so crucial here. Best wishes to those who are in the thick (and thin) of it!
    Ponygirl likes this.
  14. Affy

    Affy New Member

    Hi love , I forgot to ask. ..when you were shedding did you get to the point where your scalp showed? And your hair strands grew in thinner ?
  15. Spork

    Spork New Member

    Just updating here. Exactly six weeks ago my ferritin came in at 29, and I started the furrous fumerate 2-3x/day, 500mg Vit C 2x/day and 500mg L-lysine 2x/day. Yesterday it came in at 53. My extreme shedding has only gotten worse. Yesterday was very bad. I see no difference so far. I'm still losing hairs of all sizes, new baby hairs, old mature hairs, etc. Large white bulbs on the ends. There has been no new regrowth in months, since this phase started in early June.

    My thyroid levels are fine, I had them checked six week ago, and checked months previous to that.
    My vitamin D and B levels are great. I'm at a loss. I'm still going to push over 70, probably to 90 and just maintain, but I'm not hopeful. I've been losing my hair since I was 15 and each year after it has only gotten worse. The sheds got closer together, lasting longer and longer. When my hair loss started it was a once a year thing for a month and I wouldn't see it again until the next year, then when I turned 20 it was a twice a year thing lasting 3 months at a time, and each year beyond that, it got even worse. At 24, I can now clearly see my scalp on top, front, and sides. Sides when pulled back. I spent an absurd amount of money on a Follea wig which I really don't want to wear, but like I said, I have no hope.

    I've read many women's posts on various different forums who have all maintained a level of 70+ for quite sometime with no change in shedding or regrowth. Even if mine did stop, I think it would just be a coincidence and it'll start up 2 months later like it always does.
  16. Ponygirl

    Ponygirl Member

    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!
    dream1649 likes this.
  17. Ponygirl

    Ponygirl Member

    Elizabeth, I'm only two weeks into your 'iron cocktail' and I've been using Ferro Sequels. I just purchased the IronSmart, too. I wonder how much IS would equal the caplet irons? Any insight? I would much rather take the liquid than the caplets. Thanks!
  18. HealthyLife

    HealthyLife New Member

    How do I raise my ferritin without overdosing on iron?

    Hello, I’ve been on this cocktail for about two weeks now. I’ve been taking regular iron pills from the grocery store until my order of Ferrets Ferrous Fumarate comes in from Amazon. I ordered a iron blood test from a private lab shortly after starting and my ferritin was 27 and saturation also 27. I saw my GP a week later and she ordered another blood test, my ferritin actually went down slightly to 26, my saturation went up to 34 while my TIBC, transferrin, UIBC are on the very high end of normal, and my Iron serum being over the limit. My doctor told me to stop taking iron supplements. How do I get my ferritin higher without overdosing myself on iron?

    Also, just FYI I am looking into other options to gain more information on my health. I am curious if I have any food allergies, maybe celiac, or a ‘leaky gut’ which can be caused by parasites or candid yeast. I’m planning to order more tests from a private lab since my GP doesn’t seem to know or care much. I also plan to do an elimination diet.
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  19. Ponygirl

    Ponygirl Member

    Update: Two weeks into the 'iron cocktail' and still no slow down in shedding. I feel a bit better, so the iron must be helping my extreme fatigue. Experiencing another abnormally heavy period at this time. I wish I knew how much iron is too much (to take) because I believe I'm being depleted once again with this heavy bleeding. Any insight, anyone??
  20. Ponygirl

    Ponygirl Member

    Update: Three weeks into the 'iron cocktail'. There was one day this past week where shedding was a bit less than it has been...then it resumed to 200+ hairs per day of shed. Very depressing. I'm now taking three (generous) teaspoons of liquid IronSmart at least once per day in addition to the twice per day FF caplets/C/Lysine...plus my other daily supplements. I do want to mention that since I completely overhauled my nutrition to eliminate sugar, bread, and high glycemic foods (including most carbs), I've lost ten pounds in three weeks. Loving this, as I want to lost about 20 more to get to a long-desired target weight. If nothing else, my anemia has been a huge wake-up call. I also tossed any hair product that contained sulfates and/or parabens. Now...to get those iron levels up to stop this hair loss! I go for blood work on 11-20. Will continue to update. Elizabeth, if you're reading, would love to have an update from you and any encouragement would be appreciated! Thank you! :)
    dream1649 likes this.