Low ferritin story

Discussion in 'Iron' started by tori11, Oct 28, 2013.

  1. tori11

    tori11 New Member

    Hi,

    I joined this site after suffering hair loss from low ferritin. I've found myself glued to the computer screen looking at other people's stories trying to find out how long the dreaded shedding will continue!

    At the end of September I finally got blood tests because my hair was falling out loads and was diagnosed with low ferritin (5). My doctor put me on 210 mg 2 per day ferrous fumerate tablets. It says on the leaflet with the meds that you can take 2-3 per day so I'm thinking of upping my dosage. Thoughts?

    I've been taking my iron tablets for just over 2 weeks and haven't noticed any change as of yet (But this isn't unusual!). I'm keeping this update of my progress so that anyone else who is struggling can relate to it because I know its helped me a lot to read your stories.

    One of the things I always hated was people saying "It doesn't look any different, you're being paranoid". For someone who knows what their hair is naturally like, and knows its falling out I found this hard. I'd say I've lost just over a third of my hair so far. Luckily I've always had a lot of hair but there's always the thoughts of.."If this continues falling out at this rate, will I end up bald?!"

    I did suffer from TE about 3-4 years ago and found I ended up just forgetting about my hair and it went back to normal without me realizing, however the shedding is much worse this time.

    So far, I'm trying to include one source of iron with each meal I have, and take my iron tablets on an empty stomach with vitamin C, B12 and lysine. Is there any other advice you can give?

    I will update this story as I go along and let anyone out there who is going through the same thing know.

    I know what it's like to get obsessed over it and some days I feel so low I dont even want to go out of the house, but its nice to know there is a community of people here going through the same thing!

    Tori
  2. Ray

    Ray New Member

    Tori,

    I'm so sorry to hear about your struggle with hair loss. I have been dealing with this for 14 years, and I'm only 32 at present. I have been to so many doctors and all my tests reveal normal levels of everything, which shouldn't be frustrating, but it is! The doctors say it is probably genetic, but when my health insurance starts, I'm going for one more round of testing. After that I'll just buy some hair. I'm so tired of worrying!

    I have often feared leaving the house because of my hair. I often don't do anything that involves wind, water, or too much sunlight, which is vastly inconvenient while living in Florida! I'm just so over it that I'm not going to let it run my life any more. A few more visits, then it's wig city for this girl!

    I really hope that the supplements help you, and thanks for your post. I will mention this to my doctor when I go in for my exam. I am interested to find out how the treatment progresses for you. You're in my thoughts and prayers!

    Ray
  3. tori11

    tori11 New Member

    Hi Ray,

    Wow that's a long time to spend worrying! And a long time to have this problem :( Have you had your ferritin levels tested because I am aware that some doctors only test circulating iron levels which is not always the best indicator.
    I can imagine it is extremely frustrating for you - at least if you were diagnosed you could try and make changes.

    Good that you're not going to let it run your life! I always joke that if I had to resort to getting a wig at least I could change my hair every day, but it's true.
    I work as a therapist for people with anxiety and depression and when people have a lot of worry I always quote don't worry be happy (in every life we have some trouble, when we worry we make it double). It's sad that its affected you for so long and had such a big impact

    I would really push for a diagnosis from your doctor - even if it is genetic. I'm from the UK so we have the NHS, don't know what your experience is like in Florida but within the NHS you have to really push for anything because if something will cost the doctor money they never want to refer you for it.

    I really hope you find out what is causing your hair loss. Please keep me updated on your situation

    You will be in my thoughts also :)

    Tori
  4. tori11

    tori11 New Member

    For an update.

    I've increased my tablets up to three instead of 2, and have started as of today taking blackstrap molasses on an empty stomach

    No sign of shedding slowing down so far, hair seems to be getting greasy quickly and at some times you can see my scalp dependent on how my hair lies.

    Its all very depressing and I broke down today about it :( People say it takes 3 months after reaching the optimum ferritin level for hair to stop shedding; at this rate I will have no hair left :(

    I'm trying to be hopeful though. I'll keep updating

    Tori
  5. Ray

    Ray New Member

    Hi Tori,

    I'm so sorry to hear you have not yet found success. Could you please tell me how your ferritin levels were diagnosed. As part of my last ditch attempt to discover the cause of my hair loss, I've decided to work with BodyLogicMD. I got the suggestion from one of the ladies here who was experiencing some positive results. They test all hormone levels through saliva and blood tests. Among the levels checked are ferritin levels. I'm not really anticipating much, perhaps because all of my other attempts to find the cause of my loss and a cure for it have failed. Even if I find out that hormonal imbalances are to blame, it is quite likely too late to save my hair, given the length of time I have been losing and the severity of the loss.

    I have not yet gotten a wig, I am still using Toppik for now. As my hair has gotten thinner, it has progressively become more and more greasy. This is extremely inconvenient since the grease makes the hair stick to the scalp, exposing the thinnest areas. I have been struggling with this for quite some time. I'm still looking forward to getting a wig and being done with this nonsense, but my boyfriend insists on helping me find the answer and a better solution than a wig. It's nice of him, and he's supportive of the wig idea, but I honestly just want to stop thinking about it!

    Tori, I really hope that your situation improves. Please keep me updated with your journey, and I will do the same.

    XOXO
    Ray
  6. tori11

    tori11 New Member

    Thanks Ray,

    It was easy for me, I just went to my doctor and complained of hair loss and feeling absolutely exhausted and some weight loss and he automatically did my blood. He is training to be a general practitioner so was really enthused compared to other doctors I've seen, and he did blood tests for a lot from thyroid to ferritin to cancer! I am unsure if my hormone levels have been checked though


    I think I may have hormone difficulties - my hair is getting greasy quickly, I've noticed spotting between periods and now I am also getting spotty! I feel you with the greasy hair/hair sticking to scalp comment. I'm going through loads of dry shampoo to delay depressing shower days and also to avoid my scalp showing.

    Have you ever had ferritin tested before? If not I seriously recommend you do. I didn't realize it could have such an effect on my hair and I've read people suffering from hair loss for hairs only to discover all they needed was iron supplements. I don't know how hard it is for you to get this tested, in the UK its relatively routine through the NHS.

    This may sound ignorant, but what is 'Toppik'?? I've been debating getting a click on 3/4 wig to give my hair more volume and hide my scalp but I'm afraid it will damage what hair is left or not stay clipped in properly due to lack of hair!

    If you still haven't gotten a diagnosis or a cause I'd been trying to find one. No reason why you cant get a wig at the same time! But I can imagine once you find your solution it will be a fantastic day! And you might still be able to reverse the hair loss.

    Do you ever suffer from symptoms of low iron?

    I have a doctors appointment on Saturday, going to ask for medication to decrease bleeding through periods. Hesitant to mention hormonal things as I really don't want to be given oral contraceptives. They make me sick :(

    Hope you're well and I'll keep you updated :)

    Tori

    xxxx
  7. Ray

    Ray New Member

    Tori,

    I would NOT go on the pill if I were you. While it is possible to regain hair, one of the side effects of taking the pill is hair LOSS! I started taking the pill again about 6 months ago and since, my loss has sped up rapidly. If you ask me it is not worth the risk!!!

    Toppik would probably be a great product for you. It is a powder that mimics hair fibers. You use a spray to adhere the powder to your hair. A few cautions, though. It will start to come off if you sweat or if you get wet, and it will leave a residue on the pillow if you wear it to bed. Also, if someone touches your hair it may leave a residue. For special occasions, or even for wear at work, it is a tremendous cover. It makes me feel pretty confident when I go out. I get it at a beauty supply shop here in the States, but this is their direct site:

    http://www.toppik.com/

    As for your question about low iron, I have only ever tested low during pregnancy, which is pretty normal. Otherwise, even though I've been vegetarian for over 20 years, several doctors have confirmed that my iron levels are within a normal range and my diet has nothing to do with the loss.

    I am going to see a specialist who is checking all of my hormone levels in a month. This is my last attempt and I'm not getting my hopes up too much. I have suffered too much disappointment and I'm finally ok with getting a wig if this doesn't work. I just don't want to spend even more time and energy on worrying about something that I can't change. But for me, this has been going on for 14 years, so it's just not worth it after all this time. I'm ready to move on either way, and I can finally say that I am ok with me!

    I look forward to continuing to hear about your progress and as always, I wish you the best! I will let you know what I find out from my LAST doctor's visit :)
  8. tori11

    tori11 New Member

    Hi Ray,

    Don't worry I wont go on it. I read that too - I'm hoping to get tranexamic acid to reduce blood flow during periods. Have you heard anything about this?

    Ah that sounds good! I'll have to look into it. I am still considering buying a small hair piece for the top part of my head but tbh its mainly the length thats the issue. I have been growing my hair for 2 years and was eventually happy however its layered and now the longest layer has hardly any hairs in and looks like a rats tail! I dont want to cut it though as it took so long to get it this length :(

    The problem is iron tests do not necessarily mean ferritin tests - I would ask for this to be done as circulating iron levels can be normal whereas ferritin levels can be really low and one of the side effects of this is rapid hair loss. My circulating iron levels are fine its just my ferritin levels that are low. You should ask for your test results so you can check :)

    I hope you get positive results and if it cant be solved I'm glad to hear that you'll be happy anyway. Hair loss doesnt really matter its just how we feel about it and if you're able to move on then I'm really happy for you :) I would definitely ask about ferritin levels however. I thought my diet was ok but some people just have difficulty absorbing iron, or its lost through heavier periods


    Let me know how you get on :)

    Tori