Heart breaking hair loss can anyone give me som... - Thyroid UK

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Heart breaking hair loss can anyone give me some hope?

Bioluminence profile image
16 Replies

Hello again,

Ok so I'm on Throiryd fro Thailand and my TSH has come down to 1.75 the doctor has washed his hand of me and theres no blood test recall until February 2017...so everything should be back to normal right?

My iron is now optimised, as is my vitamin D and B12 i have been gluten free for over 9 months now, gastroenterologist say I'm ok and endocrinologist says he wants TSH down to 0.35 ( not QUITE there yet but all going int he right direction)

so why why why is my hair shedding at an alarming rate still?

I started losing hair this time last year when i started on Armour thyroid meds i stuck with them for a few moths then stopped convinced it was the meds, anyway went back onto that and then converted to Thyroid in May...i know I'm impatient but can someone please please please give me some hope?

REALISTICALLY how long will it be before the shedding stops? why is it falling out at such an alarming rate? will it just get thinner and thinner and stay that way or will it just be miserable thin forever now?

I cry every day at the sheer amount of hair I'm losing and i feel that I'm losing this battle...im exhausted and my friends are fed up with hearing about it...

I AM so grateful for feeling better the meds are working!! :-) but i still feel very anxious about he hair loss its heart breaking I've never had thin hair ever!! I've always had masses of thick bouncy curly hair but now its a horrible straggly frizzy mess....im simply heart broke n and i really want some honest feed back and acknowledgement that this isn't all in my head and that there is some hope....

Thank you....

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Bioluminence
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16 Replies
Anthea55 profile image
Anthea55

Hair loss can be due to vitamin / mineral deficiencies rather than the thyroid.

Google for 'hair loss deficiencies' and several sites come up.

Hope this helps.

Bioluminence profile image
Bioluminence in reply to Anthea55

i am pretty much optimised in the vitamin area! taken me a year to get there!! :-(

puncturedbicycle profile image
puncturedbicycle

I think this is one way in which we have all seen different results. When I started t3 my hair came back like mad. It still falls out quite a bit but there is a lot of new growth too.

As your vitamins/minerals look ideal, you might find it improves once you're on enough meds, and if you see no improvement maybe give a little more t3 a try - ?

humanbean profile image
humanbean

Since you are taking Thiroyd from Thailand I'm guessing you buy it yourself, therefore your dose is up to you. Why not try increasing your dose by 1/4 tablet a day and see what happens? For most people a TSH of 1.75 is far too high to feel well.

Bioluminence profile image
Bioluminence in reply to humanbean

oops sorry it was 1.49, i have been on 2.5 grains but have increased this last week, the endo suggested i get my ash down to 0.35 so that is my target, thing is doctor won't even let me have another blood test until next February because he said I'm in range now....so i have to get private test done but i can't afford one before my holiday!! so i have to wait now for a few more weeks until i can get it done :-( why are GPS such fkn ars£h*les

humanbean profile image
humanbean in reply to Bioluminence

If it helps, you can test Free T3 on its own for £29

medichecks.com/find-a-test/...

And TSH also for £29

medichecks.com/find-a-test/...

And Free T4 also for £29

medichecks.com/find-a-test/...

I imagine Blue Horizon do the single tests as well, but I haven't checked their prices :

homebloodtests.co.uk/

bluehorizonmedicals.co.uk/

Bioluminence profile image
Bioluminence

i was going to up my meds to 3 grains per day I've been on 2.5 for about 5 weeks now so think it may be sensible to up the dosage, i just needed to be sure that this was the right thing to do???? seeing as that i am dosing myself now and doctors have no interest because as far as they're concerned I'm 'in range' so all is well. plays they don't think that the armour is "safe"..PAH!

..im going on holiday for 2 1/2 weeks next week and can't really afford another thyroid test until i get paid so can't do that until i get back, i guess a raise to 3 grains will have started to work by the time i get back so hopefully will be heading for a TSH of 0.35 as the endocrinologist suggested...waht do you think?

other than that i was going to try and see a doctor when i get back who will let me try T3 treatment only but didn't want to go through chopping and changing until I've given this medicine a good go of at least 5-6 months. and that I've reached the TSH of 0.35....i have tried SO hard to remain positive but the hair isn't slowing down and its getting painfully thin now i feel heart broken and i will give up work if it gets worse because i see a lot of the public during the course of the day ....this is obliterating my confidence...:-(

Maggiet profile image
Maggiet in reply to Bioluminence

I'm sorry to hear of your distress. Please go back to your gp and ask for a referral to a dermatologist to determine the cause of your hair loss x

Bioluminence profile image
Bioluminence in reply to Maggiet

my GP will not refer me, they have told me that i ts normal and that its menopause....they have told me there is nothing more they can do for me

I've spoken to my husband and we are going to see a private GP after we get back from holiday it'll cost a lot of money but i need some answers...

I understand that menopause can cause a lot of issues for women but to be honest its a slow process, hair loss and stuff like that is normal as you get older but not like this....

I can only assume that it IS the thyroid and that once I'm properly medicated it'll stop....

I have to give this NDT a few more weeks and get to the TSH level the endo suggested and if that doesn't work ill go and see the private GP and see if they will prescribe t3 as this seems to work for some people...

i just wish that someone could offer me some reassurance :-(

Maggiet profile image
Maggiet in reply to Bioluminence

If you live in the UK you have the right to have a 2nd opinion to a specialist. It could be your thyroid, but there may be another cause. And iI'm afraid your Dr is wrong about the menopause causing excessive hair loss. Ask him , if it was his wife would he refer her? I'm sorry I can't offer any reassurance as to what is causing your hair loss, but for your own wellbeing it may be better to find out the cause sooner rather than later x

Bioluminence profile image
Bioluminence in reply to Maggiet

I'm seeing a doctor tomorrow its one I've not seen before so I'm hoping they will listen

Orla9298 profile image
Orla9298

Hello,

I've recently been to my gp over hair thinning, it's pretty bad in the corners each side like where men recede! I'm underactive and take 175 levo, but for years I was only on 150 which I argued for ages was too low. Finally they listened!

I saw a woman, I think seeing a woman helps as by nature they are more likely to understand hair loss from a female perspective!

She arranged for me to have calcium and zinc blood tests. I also privately tested testosterone in case that was raised as I read that can cause male pattern balding like mine. Testosterone was fine and waiting for the GP calcium and zinc results. She also suggested it could be caused by stress. Whilst I don't feel horrendously stressed, I am having infertility investigations and have had bad news so I have felt pretty sad and distressed throughout this all, sometimes a day or two of crying all day, other days taking it more in my stride.

Maybe being so stressed about it isn't helping you at all, but i can totally understand how stressful and upsetting that level of hairloss would be!!

I'm also seeing a medical herbalist (I recommend you see one for your thyroid anyway, and they can talk hair and nutrition too). She explained hair is a 3 month cycle so the condition it is in now or any issues with it relate to 3 months prior. So maybe when you get your levels all well or get to the bottom of it you will need to wait 3 months for a change. Since starting on my herbal prescription I've felt LOADS better as she is working on my liver to support my thyroid issues and overall strength of my health.

Good luck and do everything you can to not stress about it until your levels are even better and you have had a 3-6 month period at good levels, and in the meantime push other investigations in case its vitamins or something!

X

SlowDragon profile image
SlowDragonAdministrator

Just a thought......do you supplement magnesium?

What about selenium - to help reduce antibodies and also vitamin c to support adrenals

Bioluminence profile image
Bioluminence

thank you for your replies...TBH I've pretty much supplemented on everything!!! when i went to see the haematologist about my chronically low iron she couldn't believe the carrier bag of supplements i took to show her...

i had been supplementing on iron for best part of a year and only got from ferritin 4 last august to 16 in June!! she agreed to the iron infusion and i had it done privately because my doctor wouldn't listen...and we simply didn't want to waste any more time!

That was 6 weeks ago now and I was hoping on some sort of change but so far nothing...if anything its got worse...

I'm taking EPO, Zinc, vitamin D, vitamin and Vitamin K, B12, i use apple cider vinegar or HCL with pepsin, to help stimulate digestion, I've had my first period since having the iron infusion and it was heavy so have taken some vitamin C and Iron glucomate on their own last ting at night, I've taken other stuff separately too so that i can maximise absorption..

I've supplemented now for well over 6 months! and I'm sick of it, i really don't want to take anything else because what I'm taking doesn't seem to work either I'm becoming more and more despondent and yes some days i take it in my stride but i lost so much hair over the weekend and today when i went to work i looked as if i had a friggin rats nest on my head.....my family are telling me its not as bad as all that but i KNOW it is! its painfully thin it looks hideous it looks like hair that has been abused and over dyed ..not hair form someone who doesn't drink or smoke and eats a healthy gluten free diet...im sick sick sick to death of this struggle!

I KNOW its only hair and i have a whole lot of stuff to be grateful for but i would really like some solid answers, everything seems to be so hit and miss with the thyroid thing....i just cannot understand why when so many of us suffer!

i am stressed today, i go n holiday in a weeks time and i probably look my worst right now....its vain i guess....but I've tried so hard

Ok on the plus side, Im feeling better, i have more energy and i don't feel so stressed and anxious.....!!!

I've managed to maximise my vitamin levels and that helps too!!

I am working right now (although if i lose my hair I'm not going continue because i feel too embarrassed)

So i guess its all heading in the right direction....

i guess I'm looking for some grains of hope to keep me going...becase it seems to me that I'm putting a lot in and not getting much back!

might just go and eat a load of bread, cheese, wine and have a fag!!! lolol

Ginny52 profile image
Ginny52

Bioluminence, I think I can offer some help here-

My endocrine problems seemed to reach crisis point after my hysterectomy, and although I am getting nowhere with NHS thyroid treatment, I made up my mind to do what I could to make up for other hormones that my ovaries used to help with, and I went to see Professor Studd about testosterone replacement. Obviously the thyroid part is still struggling, but the miserable showers of skin flakes stopped with the testosterone, and my body hair has begun to regrow! My head hair was in everything (dinner, the bath, etc) and although it still looks thinner and lanker than it was, there are some new bits coming in round my face like when it grows back after a baby- the only thing that still looks sad are eyebrows and eyelashes, but maybe I'll have to sort my thyroid for that.....xxxxxx ginny

Ginny52 profile image
Ginny52 in reply to Ginny52

People kept finding hairs in their mouths at dinner-....

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