Help please, my hair is falling out.: I was... - Thyroid UK

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Help please, my hair is falling out.

emerson profile image
41 Replies

I was diagnosed this week. My TSH was 7.31 and I was put on 50 mgs of Levothyroxine for an initial period of 3 months before my GP says he will review it. I have many of the typical hypo symptoms but what I find most distressing is the loss of so much hair. I had long, thick curly hair and over 4-5 months I reckon I've lost nearly a third of it, or so it looks and feels. I will have to get it cut it short this week as it looks so bad. Can anyone tell me when I should start to see an improvement in the health of my hair and when will it stop falling out??

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emerson
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41 Replies

Hello, This can be really distressing, but I can't give you precise details of when it will stop. Once you have your dose optimised it should gradually stop falling out, and hopefully stop in about 6 months. As with everything else about hypothyroidism it is important to remember that everyone is different and you may find it happens sooner. Jane x

emerson profile image
emerson in reply to

Thank you Jane but at this rate I'll have little left. My husband gives off everytime I brush or blow dry my hair as he has to do the hoovering, as I can't because of my MS.

flatfeet1 profile image
flatfeet1

Replied to a similar question, reply below;

I hope this may help. Also Biotin is known as the hair vitamin.

16 Vitamin Deficiencies that Lead to Hair Loss

progressivehealth.hubpages....

As you are also tired how are your Iron levels ?

Fruitandnutcase profile image
Fruitandnutcase

That happened to me too. I was on Carbimazole for so long I went from hyperactive to hypo, then my hair started falling out big time.

It used to cling to my fingers every time I washed my hair and I used to have to rinse my hands and flick the hair into the bath, it was just so awful. I got so that I couldn't even bear to touch it. I started keeping all the hair that I cleared after I washed it - I also photographed it - I was obsessed with it. People kept saying that it wasn't noticeable but it was everywhere, at one point it was appearing on my clothes, in things I had cooked, on plates of food, just everywhere and yes, it clogged up my carpet sweeper and my vacuum cleaner as well as the bath plug hole.

It finally stopped falling out a couple of weeks ago when I started to alternate between 75/100 mcg levo and my TSH got to about 0.68 (0.35 - 5.5) and my Free T4 - 16.90 (10 - 19.8) - I've looked up my notes and it was falling out when I was on 75 mcg levo my TSH was 1.4 (0.35 - 5.5)and my FT4 - 15.4. (10 - 19.8) so there must be a point where it sorts itself out.

My hairdresser out a few layers in it and it is still about chin length. Must say I found my hair falling out very upsetting.

Liz x

lizanne profile image
lizanne in reply to Fruitandnutcase

That's really interesting because actually you are not talking about a huge difference in readings between 75 to 100 mg of T4 and 16.9 and 15.4 of T4

Shows what little tweaks and nuances it takes to get this right!

Fruitandnutcase profile image
Fruitandnutcase in reply to lizanne

It does doesnt it. I couldn't believe it stopped falling out just like that. I think it must have been the little bit extra levo that took the TSH from 1.4 down to 0.68 rather than the T4. I was able to persuade my doctor to give me the extra 25mcg levo between endo visits because I was getting really cold again. I seemed to get cold whenever I needed my levo raised.

Liz

emerson profile image
emerson in reply to Fruitandnutcase

Thanks LizH for your reply (and to everyone else as well). I can completely identify with your story, I too find hair everywhere. I was afraid someone might think me vain being worried about my hair (especially as there are maybe more 'important' symptoms but because of my MS I have an ileostomy and urostomy- so as a woman of 46 I have 2 'bags' to compensate for my double incontinence. Obviously I find this devastating but I've also found such 'heavy' hair loss due to my thyroid nearly as bad. I feel its finally and totally striped of my femininity.

Fruitandnutcase profile image
Fruitandnutcase in reply to emerson

I can imagine, its absolutely not vain at all, somehow I found it was just horrible and just absolutely hated it happening, somehow or another it just really upset me and you have got so much more happening in your life. I got that I didn't even want to touch my hair if I could help it. I've been using meadowsweet shampoo and conditioner that Moggie on here told me about, not sure if that helped or if it was just that my TSH got to a good level.

Liz :-)

emerson profile image
emerson in reply to Fruitandnutcase

Thank you Liz, I think it's true when they say that your hair is your crowning glory. I will certainly look into the meadowsweet shampoo and conditioner as I've been swapping and changing different ones with my fingers crossed that one of them will help. I really appreciate the time you've taken out of your Saturday night to reassure me. Thanks again, Sharonx

Fruitandnutcase profile image
Fruitandnutcase in reply to emerson

No problem at all, I know exactly how you feel, it is just horrible. See if you can find a hairdresser who understands your problem before you deocide to have it cut short, I know my guy was very reassuring about it (even though I'm sure he was lying when he said it wasn't bad) and he left it pretty much as it was and just cut some longish layers into it to lighten it up. Liz x

in reply to emerson

Oh how I can relate to that feeling. I am so saddened when I hear others are going through those feelings. Hopefully when you get your hormone levels raised the hair may even come back in.

Jemmafo5ter profile image
Jemmafo5ter in reply to Fruitandnutcase

Hi there, just want to thanku for writing your experience on here, I to at the moment is losing a lot of hair due to the thyroid it is starting to get me down now as I wasn't blessed with a lot of hair either reading your comment has given me hope that it will stop soon. Also just wondered was your periods absent or all over the place while this was happening to, so sorry I know it's a personal question but mine are and just wanted to know if it is connected. I'm seeing my doctor on wed as he has my blood results thanku again.

Xxxjem

Fruitandnutcase profile image
Fruitandnutcase in reply to Jemmafo5ter

Sorry Jemma, can't help you on the periods because I am in my sixties :-(

I read somewhere about peppermint shampoo so I am trying that at the moment to see what that is like.

If it is any help even when I was within range I felt a lot better at the lowest end of the range, so don't forget you can be 'within the range' or 'normal' as doctors will tell you and still not feel all that great.

Good luck on Wednesday :-)

in reply to Fruitandnutcase

How do you alternate? 100 one day and 75 the next? I have been thinking of alternating my dose so my TSH will come up a little. I lost horrible amounts of hair when on too much T3. It is my first clue that I am too high and/or too low. It is awful when the hair is falling out like that. I have a lot of hair (used to) so no one took me seriously when I told them how badly it was coming out. I didn't want to brush it because it came out in gobs when touched. Washing was a nightmare.

Fruitandnutcase profile image
Fruitandnutcase in reply to

I alternated because I knew I was needing more levo - I was seriously cold all the time - it was June and I was still wearing my quilted coat plus jeans, vest, tee shirt, cardi or jumper, gloves and a scarf and still feeling cold meanwhile people around me were in short sleeves and not feeling in the least chilled.

Anyway, I managed to persuade my GP (who was worried that I might get hyper again)to increase my levo - she said to take 100mcg on Mondays, Wednesdays and Fridays but in the end I just too 75mcg one day then 100mcg the next and that was enough to warm me up.

Yes, I used to have to rinse my hands and shake the hair off them every time I washed my hair, it was horrible. I used to collect each heap I removed from the plug hole/ base of the bath, dry it then keep it. I was on the verge of putting my little bundles into those little plastic bags you get from the bank and carrying them with me to show to people who said 'but you've got such thick hair'

I was like you, I didn't even want to touch my hair. My scalp felt strange too - as if it was kind of gritty, my hair was like straw but it was also greasy. Yuk!

Fortunately it stopped falling out once my levels got to the right place for me, TSH around 0.56-0.68 - I also used Meadowsweet shampoo ( recommended by someone on here and ordered online from a company called Dancing Dolphin)

I also used their other wonderful products for my aching feet, muscles and joints. I don't use the shampoo any more but their muscle lotion is terrific - my husband even uses it now and swears by it. I am using Neutrogena shampoo at the moment and that seems to be ok.

Good luck with alternating - don't suppose you even have to do it every other day - you could do it Mons, Weds and Fris like I was supposed to do or any other arrangement that suits you. :-)

Bioluminence profile image
Bioluminence in reply to Fruitandnutcase

OMG this is exactly like me...:-( I'm optimising everything i can right now.......i goes its just a case of getting properly medicated i feel terrible :-(

Fruitandnutcase profile image
Fruitandnutcase in reply to Bioluminence

Hi, I still lose quite a bit of hair but I'm having real success with caffeine shampoo Plantur 39

boots.com/en/Plantur-39-Phy...

I've got the whole range. I use the lotion because my hair is long and I don't need to wash it every day.

I still lose quite a lot but I'm quite sure it isn't falling out as much as it was before I started using it.

I also had about an inch or so trimmed off, kept the ends all one length, the hairdresser said layers wouldn't be good and I bought bought a good bristle brush (Kent not a Mason Pearson - couldn't afford that!) and brush my hair once a day with that - that was my hairdressers advice - it spreads the oils from roots to ends and it is definitely not as dry as it was before I saw him.

Hopefully once you are properly medicated you'll find things improve. I eat lots of fish and vegetables. I don't eat grains because they really spike my blood sugar - I eat gluten free to try and reduce my thyroid antibodies and that is really working yay!

Make sure your vitamin D, B12, ferritin and folates are at the top of their ranges - I use a vitamin D3 spray and Jarrow's sublingual methylcobalamin although I'm having a holiday for that at the moment.

Good luck.

Bioluminence profile image
Bioluminence in reply to Fruitandnutcase

what a lovely reply and yes I'm doing all the dietary things as you suggested...ive been gluten free 8 months or so now and feel better although i think it'll take time for the gut issues to heal up

im optimised in B12, iron and folate too as I've had an iron infusion I've injected B12 and had sub lingual b12

I've just had last results and I'm still not properly medicated but hopefully ill even out in a few weeks

I'm now on 2.5 grains of NDT thyroid medications...

All i can do now is wait...ill look at those products I've spent a fortune on them and so far have found that the aussie stuff works quite well. i have a fab hair dresser who said exactly same about layers..

doing all i can onwards and upwards eh xx

Fruitandnutcase profile image
Fruitandnutcase in reply to Bioluminence

Sounds good. I found my hair falling out was just the final straw and SO upsetting. For a while I photographed it with my iPad! Then I gathered each little heap and put it in a bank money bag. The idea was that the next member of my health team who said 'but you've got such lovely thick hair' would get them as a present. In the end I got a grip of myself and threw my collection in the bin - having your hair fall out is just the last thing us people with thyroid problems needs.

Sounds like you are well on your way to being sorted out, your vitamins etc are pretty much sorted, you're on NDT and you've got a great hairdresser and you've gone GF. It is amazing how easy it is to be GF. My husband who is trying to lose weight and who I have told he really ought to give up bread and porridge if he does announced pathetically yesterday that he 'really likes bread'. I pointed out that I would love nothing more than an inch thick slice of Crank's wholemeal covered in butter with a dollop of raspberry conserve on top and that I miss a nice stodgy fruit scone and butter too. That kind of shut him up, it looked like he thought I'd given up those things without any difficulty. I walked past a cafe today and a lady was sitting right by the pavement eating a fruit scone - it was all I could do not to snatch it from her and eat it 😉

Relax and be kind to yourself and I hope you get sorted out very soon. Unfortunately thyroid problems seem take a while to get sorted out.

ebites profile image
ebites

Hi emerson, I'm really sorry to hear this, all I can offer are internet hugs if you want them. Don't ever feel shallow about this, honestly - hair can be really important to your self-esteem and I totally understand.

I'm the same as LizH: it's all over the carpets, my clothes, etc. I run my hands through my hair and end up with shed strands tangled around my fingers. I have trich too so it's really distressing.

It will take a few weeks for your Levo to work, but then you might find 50mcg helps with your hair - I hope so. xx

emerson profile image
emerson in reply to ebites

Thank you ebites. Your experience is so similar to mine and Liz above. The hair dropping out at such a rapid rate really was the last straw for me. Strangely I coped better with some of the other physical symptoms such as hot and cold intolerance, dry flaky skin (yuk) and extreme fatigue. When my hubby said (playfully) that he was sick of finding my hair all over the place, I just burst out crying and that's something I don't do very often. Thanks for the hugs and support, I hope that I'll be in the position to do the same for someone else in the future. Sharon x.

Mouse profile image
Mouse

I also had this problem and still do to a certain extent but since taking an iron supplement, as my ferritin was low but in the normal range, things have improved greatly.

Have you had your ferritin levels checked?

emerson profile image
emerson in reply to Mouse

Thanks for your reply. I've been in and out of hospital 4 times over the past 8 months due to feeding complications brought on by MS, My thyroid problem was not diagnosed at any stage because I had so many other serious pressing medical issues, one of which was anaemia, I ended up having 5 transfusions over my stays in hospital. At that time nobody could tell me why I was anaemic - they just treated it. I've been taking an iron suppliment for the last 2 years but keep slipping into anaemia anyway. I suppose I should be pressing my GP but rarely see him except when it's a dire emergency. I've been reading some things that people have been kind enough to post on this site for me and I think I've worked out that iron is needed to allow your thyroxine to work - is that right?

Vsteph27 profile image
Vsteph27 in reply to Mouse

What iron supplement did you take?

Elaines profile image
Elaines

I have experienced this too and it's really distressing My hair hasn't really fallen out, but it had stopped growing, become very thin and lost it's curl.

Someone on this site recommended taking a liquid Iron Supplement and for the last 3 weeks I have been taking a daily dose of hubner Iron Vital F as it contains added B vitamins. I don't know if it's had any effect, but is does seem to be growing again. My roots have appeared for the first time for 3 months. I'm due to give blood soon, so I'll find out if I'm anaemic then! People on this site are generally a mine of useful information. Just beware of having your hair cut too short. I did as my hair was looking so awful and it barely grew for 2 months.

emerson profile image
emerson in reply to Elaines

Thanks Elaines for your post - I'll have a serious think about what to do with my hair this week - I have a hair appt. on Friday. I haven't had my hair short for 40 years!! and can't bear to have the scissors taken to it.

CamillaB profile image
CamillaB

Don't ever think you're vain for hair loss getting you down. It's pretty much accepted for men to lose their hair but for a woman it can be devastating. Mine started falling out about 15 years ago and it is one thing that really affects my self esteem. I wear hats a lot of the time when I'm outdoors as have lost so much from the top that I feel very self conscious when the wind blows my hair back! It does make us ladies feel less feminine for sure. I was told by the doctor that "it's just one of those things" same as the epic tiredness, hoarseness, mental fog and the every-3-week-lasting-10-days-menstrual-cycle were also "one of those things"

I have been taking an alternative medicine, an L'arginine based product(called Ark1) for nearly 2 weeks now which has greatly improved many of my symptoms and am hoping it'll help with the hair loss over time too. One of the things it does is increase blood flow so one would think it'd help with hair growth too. I've never tried thyroid meds(my doc won't give me anything as blood tests are 'normal' Grrr!) so don't have first hand experience of seeing if that helps hair growth but it sounds hopeful from what the others said that the hair loss will settle down once you get the right level of meds.

emerson profile image
emerson in reply to CamillaB

Hello Camilla, I'm very sorry to hear about your hair loss - it's much worse than mine and I feel awful for even complaining about my own. I agree with all you say and I hope you get the correct diagnosis soon which will allow you to get the proper help for your symptoms. I wish you all the best. Thank you x

lolajone profile image
lolajone

My ferritin was low and lost so much hair it blocked the drain. endo helpful (not) response was that his wifes hair fell out too. anyway i found my hair loss improved once I got ferritin to about 80

CamillaB profile image
CamillaB in reply to lolajone

lolajone don't you always love it when a male doctor tells you to stop complaining about stuff that they don't have to experience! When I told one of the nurses at the practice that the doc told me my 3 week cycle was normal, she nearly hit the roof and said only an idiot man would say that. Haha

heathermr profile image
heathermr

I too lost loads of hair because of my hypothyroidism. In the end my hair was so thin and weak that I bought several wigs in my normal style and wore these regularly until I did battle with the Endo and forced him into giving me just T3. After about 3 months on full replacement dose not only did my dementia improve but also my hair has started to grow back. I am now self medicating and supplementing the T3 that my GP prescribes but I have got most of my life back at long last. The damage in my brain caused by the hypo has been there for too long to correct itself entirely but the wigs have now been bannished to the wardrobe and my hair is steadily growing back after 10 years. I can now put it up into a pony tail but I can't wait until all the new layers grow out.

So take heart, battle to get the right medication for you, at the right level for you and hopefully your hair may grow back.

Heather

Doubletrouble profile image
Doubletrouble in reply to heathermr

Thanks for your post heathermr, I'm at my wits end and today after trying to manage my hashimotos for 10 years visited the doc in desperation. My hair has been thinning for years now and I have to colour my scalp with dermatch. It's so thin it's too embarrassing to go to the hairdresser. I can't wear a wig as it would be do obvious. I tried all sorts of supplements and combinations but to no avail. I've asked to be referred to a new endo as the one I saw previously was rude and dismissive. I'm praying the new one will be more sympathetic to my plea for t3. Like you I'm battling with brain fog also general light headedness and joint pain. With the hashimotos I have other autoimmune conditions including dry eye syndrome and vitiligo. I'm hoping there will be no more. I'm gluten and alcohol free to try to minimise inflammation in the gut. It's such a confusing array if symptoms! Glad that you have started to feel better on t3, I hope the endo will be sympathetic to my request!

heathermr profile image
heathermr in reply to Doubletrouble

Take heart and do think about a wig, they are lovely and warm in the winter, so easy to care for and even the cheaper ones look really realistic. Just tell everyone you fancied a change of hair style and then its not so obvious.

T3 is very difficult to get through an Endo. I got mine by refusing to take T4 - you do have the right to refuse a medication that you believe does not suit you and then they have no choice to let you have T3. Just be warned that you cannot "go back" on to T4 if it does not suit you. Perhaps it would be better to ask for a trial of T3 to see how you go. My experience of Endo's is very much the same, rude and ignorant. I got most of my info on T3 from Paul Robinson's book on T3, its a mine of info.

Doubletrouble profile image
Doubletrouble in reply to heathermr

Thank you so much for this advice, I'll definitely read this book so at least I will be armed with the information I need. Do you mean if I go on a combination of t3 and t 4 I can't go back on to t4? Or is it if I switch from t4 to t3 I can go back?

heathermr profile image
heathermr in reply to Doubletrouble

Most Endos refuse to have anything to do with T3, so to get T3 you may have to refuse to take T4, as they must treat you with something. However if you use this argument to get hold of T3 you can't then turn back and then ask to take T4 again even in combination with T3. I had already tried T4 and T3/T4 combination and neither worked for me. Its only since I tried T3 on its one that I got better, but different people need different things.

Heather

Doubletrouble profile image
Doubletrouble in reply to heathermr

Thanks for this Heather. My GP told me I'm now border line on the upper limit for my blood test. I think I might reduce my levothyroxine by 25 mgs to 50 mgs to see what difference that makes before the appointment for the endo comes through.

tegz profile image
tegz in reply to heathermr

Interesting take on T4 -and T3 follow up, on refusal.

I may need to remember this tip! [& PRs book]

My GP is nice enough -but 'hard line' on treatments/tests etc.

emerson profile image
emerson in reply to heathermr

Thank you lolajone and heathermr for replying to my post. Dealing with GP's seems in my experience at least to be a constant battle, Even though I have severe MS and complications arising from that (and now hypo) I'm always having to ask for tests and referrals that should routinely be done. I do think if I complain about hair loss I'll be told that it will grow back - take it or leave it. I don't know if the 'distress' of the situation really registers with them especially if you get a male GP. As I said above when I presented with hypo symptoms I was told that he thought it was only anxiety - he made that diagnosis within 5 mins of seeing me, Although I'm really quite ill I really do avoid the GP unless it's an emergency. My saving grace is that I have an excellent surgeon and he has done a lot of work on me and made my life bearable.

To be honest in my mind already I just don't want to go back to my GP and ask for the tests that a lot of people on here have advised me to have.

SnagglePuss profile image
SnagglePuss

Hi Sharon, just joining in to reassure you that Levothyroxine WILL remedy your hair loss, but like everything else it has to get into your system. If I remember correctly the hair loss slowed down within a couple of months, & my long hair grew back in as good or better condition than it was before. I've been taking it for about 20yrs now, initial symptoms like some of yours; fatigue, poor memory (to the extent that my job was in danger), frequent severe headaches, weight gain, very dry skin, poor tolerance to heat (it was summer) and also I felt the cold more than previously. My current dose is 100mcg daily, though there have been occasions when my Dr has upped it to 150mcg & then retested me after 3mths. Stick with it, take the tests when you are asked to do so, especially considering the absorption problems you have expressed concerns about.

Edited to add link to another post elsewhere on this forum, to give you some hope :-) healthunlocked.com/thyroidu...

Best Wishes, Puss

emerson profile image
emerson in reply to SnagglePuss

Thank you SnagglePuss I'm so glad for the reassurance, I think I need to persevere with the Levothyroxine and suggest the dr review my levels at 6 weeks (instead of 3 months) as some people here have suggested. When the GP gets the right dose for me maybe I'll finally see my hair start to grow again. I've made an appt on Friday to have it cut - though it pains me, it might just look better. Fingers crossed x

Sara72 profile image
Sara72

You have had lots of replies here so apologise if I repeat myself. My hair fell out and broke off for a couple of months and then it felt awful, the only way I can describe it is like i'd left conditioner in it or not washed it. I have quite a wave in my hair which I lost. I tried cutting my hair, colouring my hair when I look back at photo's It looks like I was having a midlife crisis. I would so don't do anything drastic just hang in there it will get better. Mine took several months & although my levels are not stable my hair is happy and healthy with its rather annoying wave present :-D - good luck and remember it's your thyroid and not you! x

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