Telogen effluvium regrowth??

Discussion in 'Open Topic (General)' started by Leanne274, Mar 12, 2012.

  1. LM_83

    LM_83 Member

    Oh don't get me wrong we've had many a 'if you say one more word about about your hair I'm going to shave it off while you're asleep!' conversations!

    I think our state of minds affects our bodies more than we know! It can't be easy contending with this on top of everything else you have to. How did your IBS appointment go? Have you had your immune system looked at?

    I'm going to look into that Aloe shampoo and treatments - thanks :) the Dermax shampoo has fried my hair too it's awful. My head itches so bad too but I'm so scared of scratching and damaging more follicles I've cut and filed my nails right down!!

    I've decided I'm going to ask my GP for the coil instead of a new contraceptive pill and I'm going to come off my anti depressants with GP support. I want to see what my body does on it's own but can't risk pregnancy at the moment as much as my little girls keep begging me for a baby brother hehe :)

    Your ferritin is very low, I had TE two years ago and my ferritin was 22. I never got it re tested as it seemed to balance out quite quickly. My ferritin was 88 or 83 when I had it tested when this all kicked off this time around. Are you taking an iron supplement? And zinc/vit c to aid absorption?

    Your not ranting at all this place is great for coming to release and it helps so much to talk to people going through the same. Anytime you need to chat I'm here to listen... well read :) :) xxx
  2. samantha3333

    samantha3333 Member

    Hi Khikhob,

    May I ask why your doctor would check your DHEA level? I too am trying to get as many blood test done as possible but none of my doctors thinks I have other health issues apart from a low ferrin and a low vitamin D as I really don't have other problems or feel bad biologically. I have even consulted my bf's mum who is a nurse about PCOS as I have never tested it before. After knowing about my medical hostory and family history, she is very confident that I dont have PCOS and so are my trichologist and family doctor.

    I fear for illness with subclinical symptoms :( xx
  3. Jenewn

    Jenewn Member

    How much Vit D do u take? Is it called D3
  4. khikhob

    khikhob Member

    Hi LM,
    Hope you are having a decent day. IBS appointment went well, thanks - I am booked for a colonoscopy this coming Thursday to see if I may have Crohn's, and then I saw endocrinologist the next day who drew loads of blood and wants to test for Coeliac sprue - both of which can cause hair loss, plus to look at other issues like hormones/cortisol. I am very grateful to have met two really great health professionals in the last week, both of whom seemed very eager to help. Seems in my experience the only doctors who have NOT been that interested in my hair loss have been dermatologists! However, rather typically the endocrinologist said that 17 ferritin was not terribly low - I did get it up to mid 50s last Autumn and it then dropped down again but haven't had it tested since maybe last Sept (2013) so she agreed to test again, as part of the blood work they are doing on me. I will be very interested to see where I am now with the ferritin. Yes, I think I mentioned before I take Ferro-Tone liquid iron which provides 152% daily value, plus 325mg ferrous sulfate - a lot , I know, but with my comorbid conditions of severe IBS and very heavy periods I seem to need lots. The time it dropped back down was when I cut down a little! Also take Vit C and zinc.
    Good luck with the coil- seems like a good idea since you suspect the pill has been a major factor. And, yes, antidepressants can definitely be a cause of hair loss - I have been on SSRIs - currently Prozac - for over 20 years. It is out of the question for me to come off them, though. I take them along with other types of psyche meds and they keep me out of hospital! I guess I may have to choose between sanity and hair, although if I lose the latter I may lose the former! Catch 22 or what!? Hope you make the transition coming off yours.
    I know the Aloe Vera stuff I recommended is very pricey but if you can stretch to it it really is very soothing to the scalp, I find.
    To Jenwen and Samantha, I am taking Vitamin D3 1,000 IU. Initial DHEA levels came back low when my dermatologist had them tested on a hunch, along with Total and Free testosterone levels - hence my referral to an endocrinologist. PCOS is usually tested by both a hormone panel and sometimes pelvic ultrasound. There are usually other symptoms such as acne, hirsuitism, fertility issues etc. I think it is fairly easy to test for if your doctor feels it is necessary. Good luck with upcoming tests!
    LM thanks for your kind words of encouragement! x
  5. LM_83

    LM_83 Member

    Hi Khikhob

    Hope all goes well with your further tests.

    The last one I'm waiting for is to have my TSH retested. It was 6 back in February which is indicative of an underactive thyroid function. Alot of my symptoms match this so I'm interested to see how this one comes back.

    My eyebrows are coming out pretty fast, I have patches in them now and my hair is still shedding. Something is at play in my body thats for sure.

    I'm changing doctors surgery now though as the GP i'm seeing for these issues is just down right rude!

    I cannot have my coil fitted at the moment as I've discovered a lump in my breast. I am going for a scan on May 14th but suspect it's just a cyst.

    If it is my thyroid I'm going to demand to see an endocrinologist as I think I have more issues with my hormones/thyroid than my GP is willing to look into stemming back to when I was alot younger. I had a growth disorder, and was treated with a course of injections for the female hormone when I was 10. I don't have the name of the condition but I just feel that it's all linking back up.

    I've had chronic eczema, asthma, allergies and hayfever my entire life. All of which are auto-immune diseases. My Mum has Ulcritive Collitus and my Nan died of complications from Lupus, which two of my aunts have been diagnosed with. My GP has refused me tests for Lupus and also for coeliac disease as she thinks I'm becomming paranoid and obsessive. Nice eh?! I just want to know whats going on with my body :(

    I'm now off the pill and will be coming off the anti-depressants in due course. My GP wants me to remain on them until I've had my breast scan and then she will begin to lower my dosage.

    We are in the middle of moving house this weekend and I could see you had replied through my emails. I'm back to packing, wrapping, lifting and storing for the rest of the afternoon! All I keep finding all over the house is my hair haha it's like the final insult!! :rolleyes:
  6. khikhob

    khikhob Member

    WOW LM!
    You have lots going on. Best of luck with the house move - we have a move on the horizon, too, but not for a few months. Funnily enough your replies to my posts normally appear in my email account but haven't the last couple of times so I am glad I checked the site itself.

    I am very pleased to hear you are changing GP - no excuse for rudeness from your doctor - it just compounds your stress level. Good luck, also with the TSH results. Not sure how you feel about that but every test I had I was hoping would provide the answer, however crap the implications!

    Lupus, as I am sure you know, can most certainly cause hair loss; it is pretty hard to test for and really involves a whole panel of tests which all have to add up, as you are probably aware. I would really try to push for as much investigative blood work as you dare! Endocrinology is the way to go, particularly in the light of the hormone treatment you had as a child - to get a really full picture so I hope your new GP is more understanding and refers you promptly.
    I really feel for you that you are now having to deal with a lump on top of all of this; fingers crossed for the scan.

    I am still awaiting all my results from the endocrinologist and just went this morning for more tests for Cushing's Syndrome. Colonoscopy this Thursday...

    Started pinning what is left of my fringe up to hide the bald patch - not a great look but probably the lesser of two evils :-( I really feel like I have been in limbo for a whole year with this crap. One way or another I can't wait for some tangible answers and I wish the same for you.

    I'm off out to buy another 3 month supply of Minoxidil as I have run out. I won't buy any more after this if I don't see results at the front, where I apply - perhaps this is causing the bald patch!!! ARggghhhh! :confused:

    All the best for upcoming appointments. x
  7. LM_83

    LM_83 Member

    Good luck with your test today! Good idea about pinning your fringe! I have heard that minoxidil can cause a bit of hair loss at first so good luck with the next three months - hopefully you will see some results soon!

    I emailed my Derm yesterday with what's going on with my doctor and she thinks it's awful. She's writing to my GP to say I should be referred back to her on the NHS as she's said I shouldn't really still be shedding. So I will be having a scalp biopsy with her!

    The moves ok, I'm exhausted though haha! As they say these things are sent to try us!

    It's amazing the range of problems we all have on this forum, including underlying health issues! I think that hair follicles and skin are so sensitive anyway. I'm just praying whatever mine is that I've got it in time to at least slow it.

    I can't believe how much I used to take my hair for granted!!

    My boyfriend has offered to pay for me to have my hair lightened. I'm really dark with a really white scalp but I don't want to put any more chemicals near my head anymore!!

    I'm going to order that aloe Vera lotion as my burning and itching is now forcing me to take an anti hystamine morning and night to sooth it and it's leaving me a bit spaced out!

    I hope all goes well today and your results from the Cushing test and endo come back soon :) xxx
  8. khikhob

    khikhob Member

    Hi LM,
    I am so pleased for you that your Derm is on your side and will push for a referral back to her - that is great news! Good luck with the biopsy. I have had to cancel my colonoscopy as I have caught 'flu from hubby! Can't get rescheduled until mid June.
    I bought some aloe vera gel (99% pure, for external use) from a health food shop the other day which was much cheaper than the line of products I told you about - I am assuming I can just add a blob of that to my shampoo and conditioner. My scalp is not so much itchy as tingly but that may be from DHT attacking the follicles... who knows...? It has been like that for a year - almost like a crawling sensation. Like you, I also take antihistamines - for asthma - and they make me very drowsy.
    I have been using Minoxidil for about 3 months already - I have also read about early shedding; it neither really made me shed more nor has sparked off new growth. I gather it sometimes takes around 9 months to work, but only has a 25% efficacy rate. It contains alcohol so is quite drying to the scalp while making the hair greasy. Yay!!
    I agree, the contrast of white scalp against roots is the biggest giveaway that the hair is thinning. I am fortunate to be fairly blonde but even so it is still visible. I guess that is the idea behind Toppik. Not sure that dying your hair would do your scalp any favours although I understand the temptation. It's kind of your bf to offer!
    Did you get your TSH levels done yet? What about the lump? Any news? Keeping my fingers crossed for you. You are right about this being a really complex issue with so many different elements involved. Sometimes I feel like it has totally taken over my life. Can't even watch telly without looking at women's scalps!!
    Best of luck with the referral and biopsy x
  9. khikhob

    khikhob Member

    Hi LM
    just a quick update - just got a call from my endo with my results - everything normal, DHEA, thyroid, testosterone, cortisol etc and negative for Cushings and coeliac's. She had also re-tested my ferritin just out of curiosity and it has dropped back down from 56 (last autumn) to 30!!! despite the fact that I am taking tonnes of supplements, although I had cut down on the liquid iron as I was worried I was overdoing it. This may explain why shedding has picked up and regrowth has stopped again, after a good spurt last month. I am baffled as to why I have such an issue with ferritin, although as I have mentioned before I have severe haemorrhaging every month. Time to get back onto the crazy iron regimen again - at least I now know I am not overloading! Every cloud.... :)
    Just goes to illustrate how much of a sodding process of elimination this is!
    All the best x
  10. samantha3333

    samantha3333 Member

    May I ask what liquid iron you are using? My shedding has gone up and down since taking iron supplements. I had three periods in the past 7 weeks due to stopping BCP (I was on it for 6 weeks and decided against it without any side effects). Palpitation came back with headaches.
  11. khikhob

    khikhob Member

    Hi Samantha3333
    I take FerroTone liquid iron by World Organics, two Tbs a day plus VitronC iron tablet, once or twice a day. I was taking IronSmart by Lorna Vanderhaeghe which I would buy online; it is liposomal Heme iron and I think it was probably better in terms of absorption, at least for me. I stopped and switched to FerroTone because I couldn't bear the taste of IronSmart but I may go back to that. It's available online, not cheap but then none of this process is inexpensive. I accompany my iron with a large glass of real OJ (not from concentrate). Are you on liquid iron and, if so, which brand? x
  12. samantha3333

    samantha3333 Member

    I took Floradix for two weeks but can't afford it anymore so changed to ferrous fumarate 3x a day. I don't know what happened to me, my shedding went historically high this morning after a period and a blood test yesterday. I need to recheck my ferritin and vitamin D level next week. I will be very frustrated if it goes down after 8 whole weeks of high-dose iron.
    Have you been shedding for a long time? May I ask what your daily hair style is now? xx
  13. khikhob

    khikhob Member

    Hi Samantha3333
    I think fumarate is better than sulfate, as far as absorption is concerned. I am sure you know that taking it with Vitamin C and/or orange juice helps you get your money's worth. I have been shedding for 13 months, very badly for the first 8 or 9, by which point I had raised my ferritin from 17 to 56 but it had dropped back to 30 two weeks ago. Probably lost at least 50% thickness, all over, much worse at the front which suggests that the CTE may have triggered of AGA :-( Shedding has definitely picked up again in the last month.
    I also shed much, much worse during/after a period - my periods are insanely heavy, almost unmanageable. I have also had loads of blood drawn over the last few months which may account for my Fe drop, in spite of continuing a very aggressive iron regimen.
    I have long blonde hair, very fine, but used to be dense. I wash every day as I have mild seb derm, using an aloe vera shampoo plus rosemary oil (4 drops). Dry naturally after applying Minoxidil to damp scalp and wear tied back in a bun to conceal thinning at front. Not very flattering but at least it hides my scalp! I brush my hair with a boar bristle brush before showering to 'remove' loose hair, so I don't have to watch as much hair go down the drain.
    Sorry for long post, just wanted to provide you with detail. What about you? How long with shedding? what is your hair care routine? Do you take copper?
    all the best, Kate x
  14. LM_83

    LM_83 Member

    Hi Kate!

    I'm back to the land of the living after a horrendous couple of weeks!

    Well I'm glad your tests came back all normal but I know how frustrating sometimes that can be as it still doesn't provide an answer.

    My breast lump has gone but they've said my right breast tissue is very thick so they want to wait six weeks to see if the hormonal adjustment from stopping the contraceptive pill corrects it. If it's still thickened in 6 weeks i'll have another scan, a blood test and a possible biopsy of some of the tissue.

    I have had terrible shed problems this past fortnight. Mine really does appear to be triggered by stress. And almost immediately. I've had issues with my daughters father being unreliable, my partners ex making threats to my life and I've had to temporarily move my family into my parents as they house we were supposed to move into got delayed due to building work. Living with my parents is stressful as although I really appreciate them helping us out they are very set in their ways and highly strung and I've found it very suffocating.

    I've taken myself off my anti-depressants - about 3 weeks now and the pill stopped about 1 month ago. I have had some dizzy spells but other than that so far so good.

    I had my thyroid restested this morning so I'm hoping for the results tomorrow or Wednesday. I'm going to push for this Lupus test. As soon as I've become highly stressed and agitated my hair has been coming out in absolute handfuls. I've blocked Mums shower drain twice!!! :(

    Ferritin levels seem like a nightmare for people on here. They fluctuate so severely. I had mine retested today, last time I had them checked they were in the 80's - i'll be interested to see if there's been any change since February.

    I'm still taking all my vitamins religiously and I've recently added therapeutic dose of pro-biotics (50 billion) to try and help with the vitamin absorption.

    I'm back online now so I'll keep you posted. Keep me posted too! :)

    Luisa xx
  15. khikhob

    khikhob Member

    Hi Luisa,
    Good to hear from you although I am sorry you are really going through the wringer at the moment. Fingers crossed that the breast tissue sorts itself out and is just a backlash from coming off birth control.

    Interesting time to stop taking your antidepressants - right in the middle of a move!!! Am I to assume it is because you think they might be exacerbating the hair loss? I know many SSRIs can, including Prozac which I have been on for 20 years or so. As I have said before, it's very much a vicious circle because I also feel that stress is a factor in my hair loss and so coming off antidepressants would be a double edged sword.

    Have you actually moved yet or are you still with your parents? We are putting our house on the market next week so I feel very much overwhelmed with all the cleaning and repairs and staging that need to be done - we need to shift this place asap as my husband has to move jobs by June.

    So, the only thing left on my list to test is the gastro stuff - my colonoscopy mid June. This may explain my terrible issues with iron absorption. I had one 4 years ago which revealed inflammation so it may have developed into inflammatory bowel disease. I mean, I take probably over the legal limit of iron ! so why I have dropped to 30 is beyond me. I can only hope this is why my shedding is back to crazy, depressing levels. I may start probiotics, too. Do you take copper, by the way? Or silica?

    I really hope you get approved for the lupus test and best of luck with the thyroid results. I, too would be very interested to know how your ferritin level is doing - please let me know. I have just re-ordered some Popeye strength liquid iron and can't wait to get my teeth into that ;-)
    Hope you find yourself in calmer waters in the next few days xxx Kate x
  16. samantha3333

    samantha3333 Member

    No problem at all. :) I have been shedding for 8 months now.
    My trichologist thinks that thinning front is very typical of low ferritin-induced CTE. I have also seen people comment how thin their fringe is because of low ferritin. I also read blog about low-ferritin HL sufferer (now fully recovered) and she had a completely bald crown. I don't 'diagnose' myself or anyone based on hair loss pattern. And no doctor should. If I have AGA (hopefully I don't as there is no family history), there's literally nothing I can do. If I have CTE, it will all grow back within time. I try to stress less now as life is too short for me to be over-obsessed about hair.
    I lost a ton of hair today and I didnt feel stressed at all. But i do suspect that I might have overdosed iron as i have been feeling dizzy recently out of nowhere. Sort of like my head is spinning after wine (Sadly I can't do wine). I am going to lower my dose to 100 mg elemental iron each day and slowly increase my ferritin.

    I recently found out that I have lactose intolerance (took me 20 years!!! How insane is that!!). I just realised how little attention I paid to my body.

    Hope you are doing well today xxxx
  17. khikhob

    khikhob Member

    Hi Samantha,
    Many thanks for your post - you have given me hope, when you say that frontal thinning is typical. I, too, have no AGA family history so I am really hoping it is CTE but as you say, there really is not that much one can do other than take care of general health. Did you have a test to establish you are lactose intolerant? I'm sorry to hear that, I hope it doesn't limit your enjoyment of food too much.
    Like you, I have days when I am not too troubled by this issue and try to keep it in perspective, but other days when I am utterly distraught about it, which I know is counter-productive. I had always enjoyed styling my hair with ribbons, flowers and bows but haven't done anything other than scrape it back into a (very thin!) ponytail for the last year.
    I am quite confused about whether I have AGA or CTE - I have seen 3 dermatologists and only one gave me a diagnosis - CTE. I have tonnes of new growth everywhere except the front, which worries me but other than staying on top of my iron and other supplements there is nothing I can do. You didn't mention whether you take copper? I have read it could be quite important for hair growth. So hard to know what is reliable info on the net.
    Hope you have a good day. xxx
  18. samantha3333

    samantha3333 Member

    No I don't take copper. I would love to check my copper, zinc and T3 level but I am tired of arguing with my GP so I am going to wait till when I go back to my country.

    I always have trapped wind problem but never thought about lactose intolerance. I wanted to test for it but my GP thinks it's not necessary. So I did a experiment by myself. I didn't drink milk today and the trapped wind problem went away :) I felt good.

    What did other derms say about your HL? I also read that low-ferritin HL is very similar to AGA. There is this girl who wrote a post on this website's network that her biopsy came back AGA. It turned out that her problem is also low ferritin and her hair grew back.

    Time will tell.

    I am sorry that you can't style your hair as you wish. Did you try using hair fibre daily?
    I would rather use Toppik as i hate to see how thin my ponytail is now. xxx
  19. khikhob

    khikhob Member

    Perhaps you have already mentioned but where are you from originally? Would you get better health care back home? I am English living in the US and have had the good fortune to have several referrals. The first two dermatologists didn't really give me any diagnosis - very vague, "might grow back, might not/ this is your new normal" etc but both were male and bald! The third was a woman and immediately said "CTE due to low iron" so I am holding on to that!
    I have a terrible issue retaining iron as I have chronic, severe IBS which causes malaborption - I had a colonoscopy 3 years ago which revealed quite bad inflammation and am due to have another one next month - my GE specialist suspects inflammatory bowel disease. Even though I am taking crazy amounts of iron it is still dropping.
    I haven't tried Toppik - do you use it? I have been using Minoxidil for about 5 months - I don't really think it has helped. I will probably stop when I run out of this batch.
    Good luck with your lactose elimination diet - at least you are feeling better in terms of general wellbeing.
  20. samantha3333

    samantha3333 Member

    I am from China originally. We can always get same day appointment with any doctor (at least I did). Doctors might not be as good but at least I can get as many blood test done as I want for low price. And I can post my blood test results on forums to get second opinion. I dont like the NHS as it's very inefficient.
    I also have IBS and hopefully taking out dairy would help. I am going to see a GE specialist in July.
    I have no idea why I have low ferritin. It could be coffee as I was a heavy coffee drinker. I drank two cups of coffee each day after meal religiously, which might have inhibited iron absorption.

    I use Toppik once in a while. I hate my extended part line. My boyfriend said it's nothing and I see it a lot on other people's head. I just hate it and apply Toppik when it's sunny.

    My trichologist thinks I definitely have CTE and it takes time to improve my ferritin and vit D level. She is going to analyse my hormone results next month. She is very knowledgeable and patient. She replied all my email whenever I panic. I don't know what sort of derm I have been referred to. If it's not someone who specilsed in hair, I don;t think it would be helpful. xxx
    Last edited: May 20, 2014