who has experienced hair loss through being either hypo or hyper .and has it grown back???
hair: who has experienced hair loss through being... - Thyroid UK
hair
Written by
pabhoo
To view profiles and participate in discussions please or .
69 Replies
•
Mine fell out like mad. I started off very hyper with Graves, was left on 40mcg carbimazole a day for two months before I got to see my endocrinologist. By the time I saw him my TSH had gone from < 0.03 below reference level to nearly 7. I started on thyroxine that day but by the time I saw the endo for my second appointment my hair was coming out in handfuls. It drove me round the bend. It drive everyone else mad too because we kept finding hairs in our food. That endo said it was because my system had been on such a roller coaster going from so hyper to so hypo.
The bit that really got me was that everyone I came in contact with ignored it and said - you've got lovely thick hair. I used to have lovely thick hair but by then when it was wet it felt as thin as a pencil. I used to take photos of it in the bath as it headed towards the plug hole - I used to have to rinse and shake my hands to get the hair off them after I had washed it - it was awful. Then I started collecting it and keeping each ‘wash’ in little bank money bags - was planning on taking them with me to consultations and stuffing them somewhere unpleasant on the next persin who said I had nice thick hair. I think I was a bit deranged about it really.
It has grown back - I don’t think it is as thick as it used to be but it looks ok - it is shoulder length, it was down to bra level until recently so it grows long very easily and as I’m 70 I suppose a bit of thinning might be expected I spent endless time looking for the perfect shampoo etc - I used a Kerastase one for quite a while but I unfortunately can’t remember which one it was but to be honest I think it was just time and my thyroid levels reaching a good point that did it, that and trying to eat a very nourishing diet with lots of fish and plenty of vegetables, eggs and nuts, no junk food.
What I did end up with was a mass of silver streaks - not grey hairs - I went really silver along my hair line from ear to ear and if I put my hair up into a chignon I’ve got lots of silver stripes growing up from underneath. I’ve read that hair turning silver is something that happens to Graves sufferers.
mine used t be down t my bum wen I was younger very thick.. now over the years its shorter but now there is thinning on top which has appeared over the last few yrs . I've been hypo 15 yrs the last 3 yrs have been hell under medicated etc .
I have lost all hair with exception t head . am hoping my hair grows back t be summat like nice
I’ll cross my fingers for you.With a bit of luck now that you are on the right medication it will recover. I just found my hair falling out to be the straw that broke this camel’s back. I found it very upsetting, I don’t think the medical profession realises quite how upsetting it is t see chunks of your hair disappearing down the plug hole every time you wash it and I mean on the scale of things it probably isn’t - well it definitely isn’t - but I found very hard.
I lost my body hair too...very weird not that I'm complaining I don't have to shave my under arms or legs anymore...the hair on my head seems to be ok.
Same here. It’s very strange but very convenient.
I remember years ago my aunt telling me that my grandmother rubbed her legs with some sort of stone when she was young and never had to shave her legs. I tried it myself but i never found a magic stone.
Knowing what I know now, I bet granny was hypothyroid. I’d say looking back my mother, her daughter was definitely hyper.
I bet it was a pumice stone - my mother (now 90) always used one!
Hypo here and I have a silver 'halo' too!
Hello.
Diagnosed with Graves and knew I was really sick many years even before diagnosis. One of the reasons was I lost most of my hair centerline circle above forehead. My lovely thick hair of a lifetime was flat, falling out and ugly. After three years Methimazole, Paleo diet, supplements and finally going into remission, hair got healthy as I got healthy. AND YES!!! I have silver streaks at 57 all of a sudden too! I refuse to dye my hair because i want to wake up every morning and remember how bad it was, and how far I have come and to remember to stay healthy, no matter how hard it is some days.
But the really funny part is that the new hair that grew back was a lovely dark brown and it also grew in streaks! So I now have very striking "streaks" of dark brown and silver. Go figure!
Two things I did change though. Used the Aveda Invati thickening shampoo 3 products (can I say product name in detail on this site?). After that changed over to a shampoo that was totally natural, no chemicals, and did not foam at all. Took a bit to get used to, the non foamy part, but my hair is nice again. So, there are things out there to do, but I find it every interesting that other women have had some of the same experiences!
Product names are fine, as are bona fide suppliers - so long as:
It is genuine comment, preferably from personal experience;
You are in no sense promoting them or suppliers;
It is not a prescription--only medicine.
Not sure if your medication is optimal? My hair was thinning really badly when first diagnosed with Hashi’s but I’m sure my problem lay with low levels of ferritin. Within about ten months of my level reaching optimum new hair could be seen along my forehead hairline. All my vits/minerals are top of range now and my hair is like a forest. Brilliant condition although I do rub hair oil in twice a day to keep dryness at bay. My diet is very nutrient dense also and I never let myself stray from it. Boring I know but I have a great head of hair.
Do you think it was mainly due to Ferritin? I can’t seem to get my Ferritin to a decent level as I lose so much blood each month. I used to have lovely thick shiny hair and but I’ve been losing loads each day for months now. It is now scarily thin at the front 😢
I lost loads of my hair due to low ferritin. Definitely worth keeping an eye on your ferritin levels. Once the ferritin is raised again, you suddenly have new growth. My hair is so much better now, but hasn’t come back as thick as it originally was.
I have little experience regarding this situation but my story is amazing! I have never had such good hair. Well you say yourself it’s difficult to raise your ferritin. If it is constantly low I would think this is the reason. Perhaps you may need to investigate your heavy monthly blood loss?
Wouldn’t worry too much. My ferritin is always higher than the upper limit. My ferritin results are always printed out in red ink. So it looks like your hair falls out with too little or too much ferritin.
Well if that’s the case then we’ve no hope. I doubt I could ever have too much Ferritin. Never been at the other end of the scale. I’m going to try and take more iron. It keeps me awake at night and makes me too warm. That’s the problem.
I’d like to get rid of some. Donating blood can help if you have too much and last time I looked into it I was within the age limit for donating blood as I’ve donated in the past but when I looked up the list of medicines I discovered I couldn’t do it because I take hydroxychloroquine
... and you can’t donate (in Wales, at least) until you’ve been off carbimazole for two years
not 100%sure.. all my b levels and folate iron and ferritin were low but on normal range .my vit d was nonexistent and tgab out of range but things are slowly getting fixed
Oh yes!
I’m hyper (controlling TMG with Carbimazole for about 12 years now) and the state of my hair is a good indication of where things are at - waist length when balanced, up to shoulder length when going through a flare up. It can get pretty scary to see it going down the plug hole but (so far!) it has always grown back.
I find that good basic nutrition & getting enough sleep (exercise isn’t a problem- I’m a smallholder 😂) are the most helpful things - shampoo varieties etc don’t really make any difference for me as the issues lie at the root not the other end, so after a bit of experimentation, I’ve stuck with my standard bar shampoo (I prefer to avoid single use plastic packaging) and just concentrate on keeping my eyes off the biscuit jar...
Yes I lost over half my head of hair and what was left was unmanageable.
My hair grew back as I got my thyroid back in shape and my vitamins and minerals.
For me it was partly b12 deficiency as when I stop the Jarrows sublingual b12 I find hair in the shower. So I would make sure that your b12 is around 800. How is your vitamin d? Ferritin? Folate? Do you supplement with magnesium? Selenium?
Hello, you have given me some great pointers in one sentence! So I will get hold of some Jarrows! My GP agreed to test my B12 at my insistence, but is still massively defensive about increasing Levo. I was told to ‘take some B12 and retest after a month’, but to me that was hardly scientific! Thanks so much for your help!
What was your b12 result?
When you have it retested you will not get an accurate result whilst taking it and will have symptoms if you stop taking it for weeks before.
If your result is very low then you need to push for b12 injections.
b12 was low normal. am taking igennus,super
Don’t know that brand.
All I know is that if it’s a tablet or capsule that you swallow it will not increase your b12 much, which is why there are b12 injections and sublingual lozenges as they don’t go through the gut
I'm just starting the increases . after I found a llovely doctor . just want my hair back on my head . am taking igennus super b complex .just finished docs loading dose of vit d as was less than 23 now gotta take supplement so got better you oral vit d . also now got iron oral.
never accept the word normal from a Doctor as they go by ranges. Your B12 would ideally be 800. The range in Japan starts at 500 apparently.
Please get good advice with your supplements. For an example some multi, especially the B complex can contain folic acid which to some of us is poison. Many of us have to have folate, not folic acid. There is a lot to research to be honest.
Also vitamin D levels - doctors do not prescribe a good quality vitamin D3/K2 which you need, and you need 10,000iu to start with and then drop to around 5,000iu, also if you can increase your iron by taking a good quality vitamin c to bowel tolerance, your iron levels will increase naturally.
If you are able to see a nutritional therapist it would be ideal, to make sure that you are taking the right supplements. It is crucial for these to be optimal so that your thyroid and everything else in your body is working well.
doc gave me 300.00 loading dose vit d. I feel fine just bought better you oral vit d and will b taking that wen my vit d test comes back tuesday
With the BetterYou Vit D spray, make sure it’s the ‘burgundy’ coloured one, this includes Vit K2 and helps the Vit D get absorbed by the body and utilised correctly (directs the calcium to the bones, muscles and teeth and keeps it out of the arteries). Also may want to supplement with Calcium, magnesium and selenium. Magnesium is better taken at night as it tends to have a calming affect and it aids sleep too 😊 xx
shawsAdministrator
I have developed another autoimmune disease, called Alopecia Areata for the past ten summers. I lose all hair but it slowly, slowly grows back only to drop out again.
I do wish I could have hair in summer and then it wouldn't matter so much in the winter.
Once we have one autoimmune condition we can develop others for some reason. I, at present, have three.
shaws,
How did you get diagnosed with this condition? What’s the difference between normal hair loss and this?
Is it just a case of losing absolutely all your hair?
I have graves and my hair falls out. I've been using a shampoo with biotin and collagen, can't remember the brand 🙄 might be keratase 🤔. It does seem a bit better.
I'm not sure if shampoo works????
Yes. My Graves first caused hypertrichosis and then diffuse hair loss. The GP did not want to deal with my questions and brushed it off as menopause. Dummy.
Hair subsequently grew back, but texture and volume had changed completely. Hair was finer, drier and less dense.
mine is very fine a d flyaway now used t be shiny glossy n long
I can empathise : (
I tell myself I'm lucky to still have hair yucky as it is : )
ditto. 😊
Is that your photo in the avatar?
yes I had just had my hair cut n dyed so it looks good I'm now a different colour lol
this is now.... just taken this
Nice : )
Other photo also looks great : ) Wouldn't have known about your hair condition had u not mentioned it : )
aww 5hank you. my hair used t be very thick n greasy... if not washed regular ... now it's very fine and very flyaway x
Mine never returned to previously thick hair. Very frustrating.
Mine thinned rapidly over few years (straight), grew back curly!
mine dead straight....
Oh yes!! Spoke to my GP about it prior to being diagnosed with hypothyroidism and got told ,’ well when it gets really bad you could just wear a wig! I was forty at the time and feeling depressed anyway, five years on and I am only now being treated properly, ie medication etc... ferritin was at 18.3 and as I understand for healthy hair it needs to be between 70-90!! I’m now taking three ferrous tablets a day for three months to try and raise levels. I hope it works!! Also supplementing with B12, vitD, magnesium, selenium, flaxseed and fish oil...and hoping for a miracle!!😬
Yep! My hair is coming out in such an amount that I took a picture last time I showered and showed my mum! She didn’t believe it until I showed her, exactly how much was coming out by just washing it, that’s without brushing it before and after, putting my hair in a bobble, or even just sleeping!! It has been happening for years, and years but has been the worst the last 3-4, my hair used to be very thick and straight as a poker, the last 10 years it’s been getting thinner and has changed to being curly! I’ve never had curly hair in my life!!
My hairdresser is one of my good friends and she has noted that over the years my hair has changed, it doesn’t grow as fast anymore, and it’s a lot harder to dye now, it doesn’t take as well as it used to, and the silver streaks, (I have them too 😖🤦🏻♀️) she says are a nightmare to cover 😂
Only thing is I’m 39 and I’ve had the silver streaks the last few years!!
I have given up all hope of it growing back tbh 🤷🏻♀️🥺 xx
Oh my talk about hair loss. I too had undiagnosed Graves and went into thyroid storm and had to either be radiated right away with RAI or surgery so opted for RAI. Was given a double dose to make sure it was dead and then quickly went hypo. That was Setp 2016. I am still losing lots ofhair altho the endo says that I am in range. Well being in range is not helping me as I have all the hypo symptoms except weight gain and I am still clogging up the drain. Soon I expect to be bald. I am so disgusted as the endo obviously does not care. I have read that being in range does not mean it is the right numbers for you. I just about give up. I could have knitted X amount of sweaters with all the hair I lost plus I must have more hair balls in my stomach than a cat. As it falls out I keep getting hair in my mouth esp right after brushing it. sometimes I can get it out and sometimes I have had it stuck in my throat. Glad to know I am not alone.
yes it nice to know we are not alone . as for numbers . all my results except 2 r low but normal. now the doc is actually increasing levo and vit d as that was very low hopefully I will have nice hair x
When I first had Graves’, loss of hair from my head was bunging up the shower tray and the vacuum cleaner, and I stopped needing to wax or shave legs and underarms. After some months of being euthyroid, I’m losing less from my head, and the hair has grown back on my arms and underarms, although much thinner and less of it than before. Curiously, my legs remain hair-free.
I have Graves and had my TT 6 months ago. My hair is coming back now - and I no longer have hair in my brush anymore - so I am not losing it either. It is not yet where it was some time ago - but it will take time to come back I am told. It has also gone back to being very curly when it had been straighter for a long time.
I know it will take a while...
Good luck ! I also use a product called Toppix to cover the small areas where I have no hair. They are on the web and come in many Colors. It’s really worked for me.
I've never had hairy legs lol however my daughter .wen she was born in 1985 looked like a gorilla. so hairy and very dark. .. she's now 34 and blonde
I to am losing my hair. It is falling out from the front half and sides. Have spent the last 4 years telling docs about it and finally got appt to see Dermatologist who is still looking into it after year and a half. Have had biopsies to see the cause which came back inconclusive from either stress or imbalance. Probably a bit of both and menopause!. Consultant is thinking of medication called Spironolactone (prescription) or try Regaine in tablet form if it can be found (I pay).
I have lost so much and my hair was fine and thin to start with.
I've just turned 53 and might be looking for a wig very soon. Other than TT in 2016, on 100mg levo, calcium& vitd, magnesium supplements. Told everything in range. Iron/ferritin levels high as supplementing which I have now stopped for a while.
Cant find anything else to try to stop it falling out.
Feel for everyone who suffers.
X
Not what you're looking for?
You may also like...
Hair loss, hair growth...
My hair continues to fall out but my hairdresser says I have new hair coming through. Is the hair...
Hair loss 😢
Hi folks, I did post a few weeks ago about this but as it's still falling out I wondered if anyone...
hair loss
hi has anyone on this group used biotin for hair loss my hair has gone that thin I could literally...
Hair growth.
Hi, I’ve had hypothyroidism all my life. My hair has always been quite dry but has improved...
Hair loss
Hi I am 5 weeks into treatment for hypothyrodism and am taking 50mg of levothyroxin! Today I am...
Thinning hair 
