Hair loss 😢

Hi folks, I did post a few weeks ago about this but as it's still falling out I wondered if anyone has had any experience with this and if it's likely to resolve or continue? I'm currently on 100 Levo and I know it's a side effect of this but if anyone has experienced it could they remember roughly how long it lasted and if it got better?

My hair has been thinning over the years due to untreated thyroid and since taking levo 4 weeks ago it has been falling out in clumps and I'm now worried That if it continues I won't have any left 😢

Many thanks

Sarah

11 Replies

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  • healthunlocked.com/search/h...

    The above link will take you to thousands of threads that have been previously discussed on this forum. So hoping you may find something useful amongst them. Low Ferritin ??

  • Thank you Marz. I did actually do a search on it myself before posting but saw that they were all quite some time ago and the ones I read didn't really answer my question. I guess I'm looking to see if anyone has had some positive outcomes and how they achieved it!! Thanks again

  • When I was first diagnosed with Graves I was put on 20mcg carbimazole a day. I was tested after a month and the carb was increased to 40mcg a day and I stayed on that fir two months. By the time my bloods were done again for my endo visit I was totally hypo. I started on levo that day.

    My hair started falling out all over, it was dreadful, I would find it everywhere including in did I had cooked for the family. As bad as my hair falling out my fingernails disintegrated, the git so short it wasn't possible to trim the rough edges any more, my fingers were agony and I could barely hold things.

    Eventually when I was taking enough levo things sorted themselves out - my endo actually said my hair loss was because I had gone from being very hyper to being very hypo in a very short period of time and she was right, when my bloods got to a better place for me my hair settled down but I have to say it was pretty much the straw that broke this camel's back. I had had very thick hair do everyone, nurses, doctors, friends etc would say 'but you've got lovely thick hair' I knew that when I washed it and my hair was wet it felt as thin as a pencil rather than thick and chunky like it used to do, besides I could see it all in the bottom of the bath! I used to collect it in little plastic bags and was always intending to take them with me to my next consultation and show them to anyone who said I had nice thinpck hair, I also used to photograph it on my iPad - you could say I became a bit obsessed about it for a while.

    Make sure your B12, vitamin D, ferritin and folates are all towards the top of their ranges - that will help your thyroid.

    I used Kerastase shampoo, expensive but worth it - they have one for scalps, can't remember what it is called but it comes in a blue bottle. At one point I used Meadowsweet shampoo that I bought online from the Isle of Skye, that was very good too. I tried not to touch / over brush my hair - well I was frightened it would all fall out if I didn't leave it alone. I used to have to rinse my hands after washing my hair then flick off all the hair that was stuck to them. horrible.

    Hopefully once your bloods are at the optimal point for you your hair will start to grow again.

  • Thank you so much for the reply, I'll keep optimistic. Did your hair go back to how it was before?

    My hair has been getting finer over the years as I have been borderline but it's never fallen out so this is a shock to the system. I'm also like you and collecting it from the showers, hands and brush!! I only wash my hair and brush it every 3 days. When I put my fingers through my hair I mostly feel scalp now too 😢. I have an appt in a few weeks and I have my list of tests I want done. Thank you again x

  • Yes, it's pretty much as it was before. For a while I could see little shorter bits along the front, I don't have a fringe, and I realised that was it growing in again.

    I was like you, I touched it as little as I could I just hated to touch it. I used to run my fingers over my scalp. My scalp felt as if it had little 'gritty ' bits In it, I used to wonder if it was nits but my hairdresser never ever said that so I suppose it couldn't have been that.

    When my Graves was really bad the front of my hair went completely silver. My hairdresser loved it and was always showing it to other clients. He would leave it down where it was pretty much brown, then he would sweep it all back and all you could see was silver and jump about saying 'Look, look did you ever see anything like that' It was fascinating I suppose.

    My TSH has crept up now and I don't feel my hair is as silver as it used to be, still silver but I feel a bit less so. I have also found I can go for longer between washes these days, I used to wash it every day but now like you I can leave it for a few day.

  • Hi Sarah, my hair has been getting thinner and thinner over the years but a few months ago started shedding a lot more than usual, it did concern me but at the time, I was more worried about other things so didn't actively look for the cause.

    But whilst researching other symptoms I discovered I had probably been suffering from pernicious anaemia for years and had suspected low thyroid function and adrenal fatigue for some time also. Long story short....I ended up purchasing injectable B12 and syringes and started self-medicating. No kidding, my hair went back to normal shedding within a week, I noticed it when I washed my hair and from not having to pull stray hairs off my clothes all the time.

    I then did further research and found this forum and a link to a hypo mom blog and started taking most of the supplements she recommended and my hair is actually growing back now .......

    A few months later, I also started taking NDT and my body hair is now growing back. You might be better off on NDT or T3. It's very common for hypo sufferers to also be very low in B12 and doesn't always show up in blood tests, low thyroid and low B12 is a double whammy for hair loss :(

    hypothyroidmom.com/10-thing...

  • Here's a link about B12 deficiency and hair loss:

    livestrong.com/article/3548...

  • Thank you I'll go and have a look at it now. I'm going to phone my endo on Monday and ask for a copy of all my blood work including vitamins so I can see where I'm at. I was on Levo last year (75) and he took me off it as I wasn't feeling that much better but after 6 months I was getting worse so a few weeks ago he put me back on it but started me at 100. Do you think this could be a reason - that it's too much (my tag level was fine on 75) or my body has gone into shock? Weirdly my nails are growing nicely - something that hasn't happened in months!

  • Good idea to get your results.

    Ive just realised that I've been taking Jarrows sublingual B12 5000mcg daily since early on in my treatment so that could easily have helped.

    I buy mine from Amazon, there's a link through Thyroid UK and they get something back from every transaction you do when you use their link

  • I was just looking at that very brand on amazon but they were 1000mcg. Would this be enough or should I get stronger?

    Thanks again

  • Don't know, I've always used the 5000mcg. My B12 is so high now (I've been taking them for a couple of years though) so I'm having a spell off so they really do work

    amazon.co.uk/s/ref=nb_sb_ss...

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