I'm new to this. Iv been on levothyroxine for over a year now, my levels arnt quite right yet but my hair loss has been unbearable since starting medication and is showing no sign of slowing down. My iron levels are fine, I take hair growth vitamins, have a good diet, use hair growth shampoo, treatments etc an even resorted to rinsing my hair with apple cider vinegar as I heard this was also good but nothing is helping. My doctor seems to think it's something else like stress or hereditary problem but this isn't the case. In 31 and iv lost about 80% of my hair and I'm desperate for help. Everything iv looked on says hairloss should calm down once medication is started but it's just got worse

20 Replies

  • Hi again - have replied on your previous post

    I'm interested to know what your 'hair growth vitamins' are? J :D

  • Viviscal and hair skin and nails vitamins

  • Kelly, I looked and after a while saw biotin & zinc - good, but some of that Viviscal is expensive £74? blimey! Type hairloss into the search box top right - you're not alone.

    May I suggest you get B12 & folate testing, along with ferritin (stored iron) and vit D. However vital minerals don't work alone (magnesium, selenium, K2, zinc, help too) and deficiencies can precede Thyroid trouble - everything slows down, including digestion/nutrient absorption - hibernation-like.

    If you do find you are B12 deficient/low - as 25% of roidies can be (sorry link not to hand) THEN supplement B12 - with B complex which includes biotin (B7)

    Always test before supplementing, then you know your starting point. If your B12 is really low you may need injections e.g. if you have pernicious anaemia (not just the iron sort - or if you are a vegetarian/vegan, I'm afraid).

    best wishes J :D

  • I know it's very expensive and more than I can afford really but I was desperate and it had good reviews :/. Well I had my bloods done on thurs and need to go back in a week but I don't know whether I was tested for these, I had 4 bottles worth! Iv just looked up symptoms for low b12 and I do have them but obviously just put it down to my thyroid. Il ask to be tested for them and look into a bit more before going so she doesn't palm me off! Thanks again. I'm so glad I joined this!

  • Please don't worry, there's so much info here, - I've been told it's just 'a learning curve'... you're on the right road, one step at a time....

    have you checked out the main TUK site? lots of info... if you want more that is...

    J :D

  • I think there's been a post on here with a link to a video about B12 being associated with hair loss. The post was about three or four years ago now so you might no be able to find it. I suggest keying in B12 and seeing what comes up.

  • Thankyou. Iv just been to buy some b12 and evening primrose oil as iv heard that helps too

  • Kelly, last time I looked, it said in the PIL in the box of Levo, that hair loss is a side effect of Levo. Have a look. I lost a lot when I was taking it, too.

    Hugs, Grey

  • I said this to the doctor but she wernt accepting it, think I might take the leaflet with me next time I go. It says a rare side effect is short term hair loss but it's been over a year now and it's still shedding. Do you still take levothyroxine? Thanks for replying

  • Yes, well, they're just covering themselves. It is neither rare nor short-term as far as most people are concerned. lol

    It's weird, really, on levo I lost lots of hair but also lost some weight. On NDT, my hair grew but so did my girth! So now I'm on T3 only and lost lots of weight, and my hair - after several ups and downs (the lot came out in my hands when I washed it one day this May) - finally looks like it's growing again.

    Fingers crossed!

  • Oh god hope this goes well for you. I thought levothyroxine was the only medication that was available unless you live in the us. I need it to stop, I'm not pretty enough to carry off being bald!!

  • I'm too old to carry off being bald!!! I might have embraced it when I was about 30... No, I wouldn't! No, you have to have a perfect skull to get away with it and I'm no Sigourny Weaver! No, I just made a collection of woolly hats - some I knitted - and a 60s-like sailor cap, which cut off the circulation to my brain and nearly blinded me! Didn't wear that again.

    Anyway, I remember a doctor saying to me at the beginning, all the old hair has to fall out, then you'll see the new stuff growing. Well, I didn't actually, I just saw skin. But the little hairs soon started to appear. I just hope they stay there, that's all.

    But, a couple of words of advice, if you don't mind. Whenever you wash your hair, give it a good massage. It's important to keep the scalp supple. If it dries up, there's no hope of the hair being able to grow back again. And every morning, give your head a good brush until it tingles, to improve the blood supply.

    I also read this :

    and I've read that Black Strap Molassas is good for hair - you either ingest is somehow, in a drink or something, or you can use it as a hair mask. I haven't really tried it because one sip told me I really didn't like it! lol

    Hugs, Grey

  • PS Are you in the UK? If so, NDT and T3 are prescribed to some patients by some people. But from what I gather it can depend on the doctor you have and his level of understanding thyroid (and possibly what he had for lunch that day!). I know that most doctors don't like prescribing them though.

    I live in France. NDT is illegal but T3 if freely available if you have an open-minded doctor. Actually, my doctor only agreed to prescribe it because he didn't know what it was!

    It's all the luck of the draw, I'm afraid.

  • Oh yeah I'm in the uk and to be honest I do not think any of the doctors will be willing to prescribe anything else but il do some research and see what I can come up with! Thanks for replying x

  • Thanks! Il have a look at that, the thing is I have curly hair, something iv detested all my life but now grateful for as it makes it appear that I have more hair, so I try not to wash it too often and it certainly doesn't get brushed. Mainly through fear of the amount of hair that comes out! Il give it a massage though!

  • But you need to get rid of the dead hair to give the new hair space to grow. Brushing it won't make any more fall out than is going to anyway. And, as I said, brushing the scalp increases blood flow to the roots of the hair and helps them grow. Cut off the blood supply and the lot will fall out! You've got to take care of that scalp! lol

  • Yeah, I have the same type of hair. Mine is curly and long. I heard all thyroid meds cause hair loss but it stops and regrows.

    But yeah, I was stimulating my scalp a lot and I'm continuing to do so as I know was Grey was talking about. When you do your hair don't pull all the way through where the curl is but be sure to get the scalp (that's what I do)

    I am on Facebook under Deborah Payton and I'm in a photo with my niece who is honey dew and you can see how my hair is. I have a lot of it and I lost a lot of it, too, but I'm not worried as it will come back but it is frustating and yes, Grey, I'm keeping the scalp massaged (((very important))) Since I started on Nature Thyroid my skin has been peeling and my hair has this white stuff when I brush my scalp but it is starting to feel better and my skin peeling slowed down.

    You are right, Grey, it takes time. What is wrong with these doctors not telling people this? It took time with my armour too and the same with Nature Thyroid.

    Thanks Grey for all your advice. I'm doing all the right things and there is this other shampoo someone told me about it's called Keratase and I'm going to order it and see how it does. I also use Argan Oil on my hair and coconut oil. My hair soaks it up big time.

    I hope yours is growing in Grey. Mine has new coming in too but it's all textured now. It was all one length for the most part but now all different lengths with my hair.

    Yeah, love ya too Grey!!!

  • Kelly-please tell me how your hair loss is going? I am convinced for me its the levo, but until I figure out another alternative I'm stuck!! My hair loss has never stopped!!!!

  • It's calmed down massively actually and Iv had a lot of re growth, my hair is now three different lengths but you can't see my scalp anymore! Are your levels stable now? My hair loss did calm down the same time last year though so I'm hoping it doesn't start again in the summer! I went to the doctors on numerous occasions and a dermatologist who took a scalp biopsy, not pleasant who found nothing. They will not accept under any circumstances that it's the medication when I know full well it was.

    I'm not sure if it's season, because my levels are now "normal" or the hair skin and nails vitamins, evening primrose oil, vitamin b12 and alpecin caffeine shampoo that's helped! My hair is still thin at the crown and the side of my head and is no where near as thick as it was but its better. I would not recommend the expensive viviscal as that didn't help. The dermatologist did recommend regain for women which I may try. She said my hair loss was "age related" at 32 I'm not accepting that at all.

    Although it's easier to say try not to stress about it, it was most definitely the worst thing about the condition for me, the tiredness, mood swings, brain fog and even the muscular pain was nothing compared to losing my hair. If I can work out how to post pics up of how bad my hair was to what it is now I will.

    Wish you all the luck

  • Okay, thank you. I can show you my pics as well. Yep, I definitely agree its the levo more than anything!!

    Have you thought of changing?

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