Continuing Hairloss nightmare

I was diagnosed subclinical hypothyroid last December after I'd had blood tests for Hairloss. I put off going on Levothyroxine for 2 months but and just took iron as ferritin was low at 22. In Feb my tsh had honey to 8.7 so I started levo 25. My ferritin was now 4! Felt rubbish had headaches tired hot flushes, panicked and came off after a week. Did 4 weeks of no Levo to see and once again tsh went up to over 10. Started on 50. All this time hair texture weird and straight ( usually wavy) and continued to shed badly. My mission became to get my ferritin up ( I also have had heavy periods for 3+ years and was diagnosed with uterine polyps) ferritin went up to 46 by May, with lots of careful research and time based pill popping. Hairloss may have slowed a littke but still there. Saw dermo said probably TE keep increasing iron and wait and see. Had also seen a trichologist week before who was off hand and told me TE and AGA and sold my her products which I didn't use as one was minoxidil. Waited and hair texture ok but still shedding. In June had tsh if 6.8 so gp increased Levo to 75. Since then hair shedding seems to have got worse again and I'm now mentaly a mess. I'm obsessed with hair can't stop looking at everyone else in public on telly etc I always had lovely hair, I'm turning 40 on Saturday and my poor children 4,7 and 9 are probably so sick (and sad) of seeing their mum be so down. I really sucked it up from April till July but after 10 months of bad Hairloss and such thin hair I feel like I'm cracking. Had op 3 weeks ago to remove polyps so hopefully heavy periods will stop- results showed then my ferritin was 96! Last week bloods showed tsh dropped to lowest at 1.6 and t4 was 15 ish. See a top dermo again yesterday and he said still doesn't think aga but continued to say, as before, that Levothyroxine is not great for your hair and my hair is not happy. Outcome of meeting- to check iron and vitamin d were in middle range for 2 months and, if still shedding, start minoxidil or other cobweb was possibly to have scalp biopsy as my dad had tiny bald patch 10 years ago and could be resorted to that and rare form of diffuse Alopecia areata. So I'm still utterly clueless and lost. Think I should see and endochronologist to see if they can help at all. Everyone's told me to stop googling but until your in it you just will never know...,

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  • You are not yet on an optimum of levothyroxine and hair shedding is common and I can sympathise with you. I also got Alopecia Areata and it has occured three times, I also went to dermatologists and did the round of treatments but didn't stop further attacks.

    Your dermatologist I think is correct in that levothyroxine can cause hair loss but many members hair has returned when they have reached an optimum of hormones.

    Endocrinologists can rarely help by prescribing another thyroid hormone rather than levo so I doubt they'll have a clue about hair loss.

    50mcg of levo is a starting dose and should have been increased about 6 to 8 weeks later by 25mcg each time until your other symptoms improve. You are looking for your TSH to be 1 or lower. Many doctors think anywhere within the range is fine but it isn't for many of us as clinical symptoms remain.

    You've done well raising ferritin etc and it is important that all our Vits/minerals are optimum too. Sometimes we're given too low a dose of hormones due to the guidelines doctors follow.

    Next time a blood test is due it should be the very earliest possible and don't eat before it although you can drink water. Also allow 24 hours approx between your last dose of levo and the test and take it afterwards. This allows TSH to be at its highest as it drops throughout the day and is the only test doctors refer to.

    A failing thyroid gland takes years to come to the stage that we have symptoms and get diagnosed, so it stands to reason that it takes quite a while to get them restored. I also had steroid injections into scalp and it helped but alopecia returned!

    Always get a print-out of your blood test results, with the ranges (these are important as labs differ and it makes it easier to comment). You can then post for comments.

    I know exactly how you are feeling and so do many of our members.

    Fertility and menstrual problems are also clinical symptoms of hypothyroidism.

  • Thank you for your message I really appreciate it. Always keeps record of tests and do bloods the way you suggested. Was yourAA diffuse or localised if you don't mind me asking? Apparently diffuse is quite rare so a scalp biopsy is something for me to think about if things don't settle. So perhaps I need to up my Levo. Gps defiantly think it normal to be anything under 5!

    Thanks again x

  • At the beginning you really don't notice a bald patch till it is very evident. So initially I had localised patches and steroidal injections helped. It then progressed that I went completely bald and have been twice so far.

    There's no way you can prevent an full-blown attack of AA.

    However, I found Nizrol shampoo very helpful when I was suspicious of too many hairs on the comb.

    This is a link which may be helpful:

    hairlosstalk.com/treatments/

    I have also read about another product but not tried it yet and reviews also seem good. What works for some people may not work for all and if it is AA that has to run its course regardless.

    watermanshair.com/

  • Ingilbertson123,

    TSH of people taking Levothyroxine needs to be 1.0 or lower with FT4 in the upper range. If your TSH is higher you need a dose increase.

    thyroiduk.org.uk/tuk/about_...

  • Hello there :)

    I'm in it. I know what you're going through. These sites may be useful

    heralopecia.com/

    alopeciaonline.org.uk/forum...

    My choice if I was where you are now -

    simplywigs.co.uk/catalogue/...

    It would need cutting in: many hairdressers will do this for you. By doing this, you'd be taking your life back - it is such a downer looking in the mirror at ever thinning hair - and the stress of doing this will not bode well for your thyroid health. My advice would be to cover up and forge on.

    If you do try minoxidil, you will find there is a shed first before it starts working, it will only enable you to keep hair you haven't already lost - not grow back any bald patches. Any improvement gained would be lost if you stopped using minoxidil

    With aga you just have to go with it and accept that your hair isn't coming back. Women are more frightened of losing their hair as a result of treatment for cancer than they are of dying from the disease...the most important thing for you to do, to decide your next moves, is to get a positive diagnosis. If it's aa your hair may grow back again - but I'd still get one of those lovely hair enhancers to cover up your patches until your hair grows back. On the other hand, if your hair is becoming finer and finer, breaking off and your thinning is diffuse, it's more likely to be aga. It's only hair. You won't die...it just feels like it right now.

    To let you know that I have maintained a role as a public speaker of sorts, throughout my hairloss journey. Crumple and let alopecia win or fight back - you are still in control.

    Just finally as you're negotiating your day to day life, remember this: no-one is looking. No-one is thinking, Holy camoly ! Look how thin her hair is. We were both blessed with beautiful hair to accompany our youth - rejoice ! Other people are all too concerned with their own angst to give a tuppenny t*ss what you or I look like these days.

    Best to you xx

  • I took those viviscal hair supplements which helped with loss. But there expensive extra to add to an ever increasing meds list. When you stop taking hair falls back out. Think the secret ingredient is marine minerals which are about half the price as the viviscal.

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