lost most of my hair it keeps shedding I've tri... - Thyroid UK

Thyroid UK

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lost most of my hair it keeps shedding I've tried everything and nothing is helping...i can't cope please please help please :-(

Bioluminence profile image
18 Replies

Just asked for t3 test and doctor did another TSH..what is WRONG with these people???...

My latest results are

samples taken on 17th june

Serum ferritin level 16 ug/L [11.0 - 307.0]

Serum free T4 level 9.1 pmol/L [8.0 - 16.0]

Serum TSH level 0.54 mU/L [0.54 - 4.25]

no further action......

Sample taken on 27th June (i had asked for a T3 test!!!the doc agreed but this is what i got back!)

TSH level 0.70 mU/L [0.54 - 4.25] sample taken 27th June

normal no further action...

WTAF?

am i normal? am i normal? am i normal?

MY HAIR is LITERALLY FALLING OUT IN HANDFULS EVERY DAY!!! and i FEEL TERRIBLE!

IS THIS IRON OR IS IT THYROID???

endo sent me back to doctor

gastroentorolgist sent me back to doctor

I'm seeing a haematologist on 12th july......

shall i just give up?????

am i normal? is this as good as it gets am i destined for more of this misery?

Im on 2.5 grains of thiroid the stuff from Thailand...

i take VITAMIN D

i take IRON SUPPLEMENTS plus 4X spatones daily

I take Vitamin C

I use apple cider vinegar

I take vitamin B complex

I take Biotin

I take folate

I take lysine

I take evening primrose

I take vitamin B 12 sublingual

WHAT ELSE CAN I DO IM MORE THAN DESPERATE!!!!

PLEASE PLEASE PLEASE HELP ME!

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Bioluminence profile image
Bioluminence
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18 Replies
Bioluminence profile image
Bioluminence

i have just ordered a private test from blue horizon at least i will have some idea of whats going on.....im so so so sad and hopeless i feel I've tried everything....

Jazzw profile image
Jazzw in reply toBioluminence

Hugs xxx

0.7 is high-ish for someone on NDT so my guess is you're undermedicated. But you're right, the only test that'll give you more evidence is FT3. Glad you've ordered one, though sorry you've had to go to the expense.

It's so wrong that labs can over-ride a doctor's request to do a particular test. Drives me nuts.

Your ferritin is woefully low still though. Out of interest are you gluten free?

Bioluminence profile image
Bioluminence in reply toJazzw

Absolutely!!! Gluten free for nearly 6 months now...😢 And yes taking supplements at different times and with appropriate foods and vitamin c etc....I've taken all the advice I can I've been doing this for 6 months..

puncturedbicycle profile image
puncturedbicycle in reply toJazzw

I don't know if this will work for you but as soon as I get my results (sometimes they don't take more than a day or two to come in) I check my t3. If it isn't there (if the lab has refused it) I get my gp to ring them. They keep the blood for a period of time and can retest it. Also, is the doctor noting on the lab form that you're being tested for t3 because you're taking t3? (I don't know if they know you're taking it.) That can help.

It's an uphill battle. I am lucky that my gp and phlebotomist are both attentive to these details but even then I have to be really on top of things.

Also re your hair, if it helps you hang in there to know this, I had good results from t3/t4 combo and my hair has come in as thick as it used to be (I even have the full length of my eyebrows back). I lost a lot of hair while on a good dose of levo (my tsh, t3. t4 were ideal, but my hair was still thin until t3 was added). Your ndt has t3 in it, so that should help. You need to be on enough of it for long enough, but it can come back. (Also sorting out your iron should help.)

Rapunzel profile image
Rapunzel

Bio I'm so sorry you're feeling this way.

Did you take C with your iron ? Look back on the excellent advice greygoose gave you here healthunlocked.com/thyroidu...

IMO you are going round in panicked circles, not giving anything time to work when it might, yet. Take a breath. Regaining your hair if it happens will be a slow process like recovery from thyroid issues.

Now go here

simplywigs.co.uk/catalogue/...

this would be my favourite but I use a different, semi permanent, more expensive option because I'm 100% resigned my hair has gone for good. These hair enhancers look great. Have a good root around the site, call the ladies up - many of them wear hair themselves. Take your hair baby to your hairdresser and get it 'cut in'. At least then, you can consider supplements and possible treatments without watching your hair fall out. I have been there and it seriously twists your mellow. Guess what little butterfly shaped gland will kick off big time, if you're stressed off your head because of your hair loss ?

Do it. Face it. Kick your hair loss in the *rse and shout back at it. You will not die from this. I'm alive, kicking and very few know my beautiful tresses are err....helped along.

Please get over this Bio. I promise it's achievable., if your hair grows back in or if it doesn't. If you need more support, PM me, or go to alopeciaonline.org.uk/ or heralopecia.com/ both organisations specifically for hairloss support, both having fora.

Be well (((Bio)))

claudiasmum profile image
claudiasmum

My hair has just started to fall out and my endo tells me it is because my ferritin is too low.

Mine has been low for two years or more on this occasion.

Yours looks very low too. I think you need to wait for the iron supplements to take effect.

When I have had low ferritin in the past it has taken a year on supplements to get the ferritin levels back up to where they should be.

Are there iron-eating parasites? I think there might be. Might be worth a check if you are supplementing and still have rock botton ferritin.

jacrjacr profile image
jacrjacr

are you taking the iron ,vitamin c and lysine together....to help iron absorption bec all i have read says you need your iron up for ndt to work better and yours is critical low for hair growth and staying on the head...i am in the same boat and many say it need to be 90-100 for hair to stay on the head and hair growth.....bad digestion can be a clue why it is low or not eating enough red meat etc....i take enzyme with meals to help...and betaine with hcl recommended by dr and mine is rising...with iron supplements as well...

Bioluminence profile image
Bioluminence in reply tojacrjacr

yes I've done all of the above...for months! :-(

jacrjacr profile image
jacrjacr

that is so strange bec your ferritin is SOOOOO LOW.....are you taking 2-3 pills a day of iron glyn or tried changing to a different form of iron bec something is not working....if you are still that low.....mine went up 10-20 points taking iron glyn form in a month or 2 and i was only taking one pill i went from 30 to 50..i forget the exact spelling but i also bought on amazon....i was just reading a post and a lady said she bought all THORNE brand b complex, lysine etc and it made a difference. i know that is a good company...

Bioluminence profile image
Bioluminence in reply tojacrjacr

I've tried every thing....seriously you have no idea..ferrous fumigate, ferrous sulphate which made me ill i took, floradix, spa tone and iron glyconate, iron gluconate, all with spa tone in between...i took with Vitamin C and orange juice....i took on empty stomach...

away from thyroid meds i never drank coffee etc..i ve done every thing I'm seeing a haematologist in a weeks time....do you think she will offer me an infusion???

jacrjacr profile image
jacrjacr in reply toBioluminence

wow sounds like you need a infusion....i went totally caffeine free started drinking water with real lemon first thing in the morning with organic NOW liquid stevia with no additives and cant believe i am off caffeine....i have one more thought for you...i read that low estrogen and progesterone, high dht from testosterone can cause hair loss.....and low adrenals with cortisol out of what......i was bad in all those areas too except with dht hence i had low dhea and low testosterone ...so like you i am still working on it...but i need to go to dr again . HAVE YOU TRIED MINOXIL...i know it is messy and nasty but here they throw that at you to try that but you have to stay on it for life....and sometimes you lose more hair and it only works on 50 percent of people so i havent tried that....i will say castor oil will bing back sparse eyebrows and some use it in hair...i chose a shea butter brand castor oil shampoo and conditioner that i love....i even bought the laser helmet and on about 6 weeks with no improvement thus far...

but i will say you desperately need more iron and the dr will probably address that right away...we hope..

jacrjacr profile image
jacrjacr in reply toBioluminence

theheartysoul.com/how-to-ch... read this...I thought about you when I was just reading it...very helpful

jacrjacr profile image
jacrjacr in reply tojacrjacr

theheartysoul.com/page/2/?s...

Everdean profile image
Everdean

Have you had your zinc levels tested?

They need to be at top of range.

My hair goes really thin sometimes, So depressing seeing it all go down the drain when I wash it. However I've found that supplementing with zinc makes it sprout again and improve the quality.

Research on the web.

Hope you find the answer soon

jacrjacr profile image
jacrjacr in reply toEverdean

HOW MUCH ZINC DO U TAKE A DAY

Everdean profile image
Everdean

After having a blood test when it first started happening, I found that just 15mg was enough. Then I stopped taking it thinking I was ok when it started to grow, The next time 15mg wasn't enough and I actually thought it was something else causing the hair loss.

Then when I had a really bad doo and seemed to be ill a lot with infections I realized (at last) that if I was seriously deficient I needed large doses. After research I realized that I could take up to 220mg for a short period and then reduce to a much lower level.

High dose can cause copper deficiency so I took that as well.

Please research before you try as it can be dangerous if there isn't a zinc problem.

Al the best.

lucy35 profile image
lucy35

Stop taking all those vitamins and medicines! I went thru the same thing and i was taking alot of supplements everyday, until one day i realized the cause was the vitamins and the medicine spironolactone (DONT EVER TAKE IT !! IT CAUSES MORE HAIRLOSS)

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