Terrible hair loss please advice: Hello to... - Thyroid UK

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Terrible hair loss please advice

Barbora83 profile image
23 Replies

Hello to everybody! I am suffering of hair loss already for 2 years, according to doctors i am fine. My hair loss started all of sudden, and i never experienced hair loss before. No one in my family is bald. Two dermatologists agreed i suffer from diffuse alopecia ( telogen efflivium). I was told i was very LOW in Ferritin and also B12. Also cortisol was very high 820nmol, 24 hours urine was collected and doctor said is fine. Testosteron is 0.3ng/ml.

HTC B12......26.6 pmol/l (recommended value 50) 3.4.2013

Ferritin .......20 ng/ml (recommended 30-160)

Also doctor said that was some inflamation in body at that time CRP in serum 3.6 mg/l

FT3....4.5 pmol

FT4.....17.6 pmol

TSHo....1.4 U/ml

TSH receptor.....0.6 IU/l

11.9.2013

FT3......3.01 pg/ml

FT4.......1.16ng/dl

TSH basal 1.10

TSH receptor ....1.41

Ferritin ....33ng/ml

B12.....52.4 pmol

7.10.2014

Ferritin 1117 ng/ml

B12.......411 pg7ml

Vitamin D....26.6 ng/ml

Any advice would be highly appreciated becouse my hair loss last already over 2 years and i dont have idea why. I am still taking iron tablets, for b12 from the begging doctor gave me only 3 injections and thats it, he didnt want to treat it anymore. My hair loss makes me stressed and depressed and lot of you understands its negative impact to our self confidence. My hair is thin especially on the top and side of the head. Most of the time i feel very tired, depressed. Maybe i should ask for more tests to be done?? Any advice pls?? Thank you Barbora

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23 Replies
Clutter profile image
Clutter

Welcome to the forum, Barbora.

I posted a link earlier on hairloss which might help you. healthunlocked.com/thyroidu......

dgleds profile image
dgleds

I have thin hair....im hypothyroid and now also have mild lupus....I also went through menopause not long ago...Either the hormone menopause thing was the worse, or the mild lupus for hair loss...or the meds that go with those 2 diseases...I look back at photos, my hair looked ok going through thyroid stuff (but hairdresser noticed a change before I even did)...I noticed it with the skin around my eyes reacting to creams and things id always used...My Mom had kinda thin hair...and one of my brothers had alopecia for a while, but he has bad stress...My Mom had B12 injections for anemiafor many many years...That's all I know...sorry wish I could help :) Im gonna look for thickening shampoos and light conditioners...and take horsetail herb supplement (Silica), and perm it...

Pinkmachine profile image
Pinkmachine

Try Glutamine - I had this issue last year, along with my thyroid and was told by an outsider that I probably had an adrenal disorder due to stress of hormones and over training. This was a fantastic supplement. I take a tablespoon twice a day (morning and night) mixed in with some juice of your choice.

You can read up on this on google.

Barbora83 profile image
Barbora83 in reply toPinkmachine

Hi Pink, thank you for reply! Yes I had very high cortizol, iam thinking to go back to endocrinologist and to have my cortisol level measured again. I am thinking it could be adrenal fatigue. Lots of time when iam sleeping on my back I feel lot of pain in my left adrenal, I don't know if can be associated to this problem. Can I ask you how or who found out about your thyroid problem? And what we're the levels? Thank you

Chippysue profile image
Chippysue

Oh my stars!!! You need to get back to your GP immediately and demand B12 injections!!! Your b12 would ideally be above 500!

Did your doctor look at these results??? You need iron!

Ideally your free t4 would be at the top of the lab range

Please let us know on this thread how you get on. You must see a different Dr if your dr thinks these results are fine.!!

Sue

Thyroiduk.org

Barbora83 profile image
Barbora83 in reply toChippysue

Hi Suze! Thank you for your reply! Now I know iam not only one who thinks that iam still veru low in B12! Iam planning to go to doctor and ask her for injections. Should I get injection every month or maybe every week? What do u think? Also wanted to ask you to be specific about T4. U saying ideally my free to would be at the top of lap range? What do u mean? Is my to t4 to high? And which date of result? I wrote the dates above each result. Thanks a lot! Appreciate your help

Chippysue profile image
Chippysue in reply toBarbora83

Do you know the lab range for your Free T4? say if it is 12 to 22 then ideally your free t4 result would be 22. Your Free T3 would ideally be around the ¾ mark of the lab range.

Your vitamin D is far far far too low! Vitamin D is so important, we are not going to get any from sunlight for months now. Your GP should prescribe pro vitamin d3. In some areas gp's will prescribe it initially and then you need to buy it yourself, a good quality vitamin d3. (Personally I would never touch the well known high street health store!)

Sadly being prescribed B12 injections is not easy. It's a numbers game again. Doctors will say that injections are only available 3 monthly but this is just nowhere near enough for some people.

YOU NEED B12 INJECTIONS because you are not absorbing it from food. Your doctor is mistaken if he/she thinks that you just need them once! Please see another GP if this one doesn't realise the importance. Have a look on the website B12d.org

Your ferritin is good now by the looks of it.

Good luck!

Sue

Barbora83 profile image
Barbora83 in reply toChippysue

Hi Suze,here is result of free T3 is 4,5 (range is 3,9 - 6,7 pmol/l. Free T4 is 17,6 (range 12 - 22 pmol/l). Also TSH receptor is 1.41 ( range is 1.5) is it not to high? And TSH basal is 0.74 ( range 0.4-2.5) is it not to low?

Definitely I will go to another doctor and demand the B 12 injections, I also can buy it on ebay and my sister is nurse so she inject it. Maybe every two weeks one injection? I will also get prescription for the vitamin D. Also as you say that my body can't absorb these vitamins from food...iam thinking to check on this with gastroenterolog, becouse in the past I had trouble with stomach reflux and gastritis. And the problems are coming back, I feel pain in my stomach very often. Would you suggest any other tests done? Thanks a lot Suze

Chippysue profile image
Chippysue in reply toBarbora83

Yes there is definitely room for an increase for your free t4 to be nearer the top of the lab range.

Why buy your own B12 when your GP can prescribe them? Nobody can tell you how much B12 you need. Most people say that the 3 monthly is not enough. Do you have pins and needs? numbness?

The vitamin D you need is D3. I certainly wouldn't have adcal prescribed by your GP as many people say that adcal causes tummy upsets. Your GP can prescribe just D3 capsules. You need a high dose to start with.

The other blood tests that are usually helpful are folate and ferritin.

When your GP prescribed the B12 injections he/she should have continued providing them. You are unable to absorb B12 from food and this may be due to Pernicious Anaemia, this is where you do not have intrinsic factor so you could ask for the blood tests for this. Pernicious Anaemia is another autoimmune disease.

Sue

Chippysue profile image
Chippysue in reply toChippysue

back to the hair loss question - watch this:-

b12d.org/bbc-documentary-an...

Barbora83 profile image
Barbora83 in reply toChippysue

Hi Sue, if I understand correctly u saying that my free T4 should be higher? So it mean is too low? Sorry english is not my native language, sometimes I struggle to get the right meaning. I will ask for this test you mentioned above for the B12. The documentary about people suffering of not having B12 was very informative. Thanks a lot once again

Chippysue profile image
Chippysue in reply toBarbora83

Yes your free t4 needs to be higher

Rapunzel profile image
Rapunzel

Hello Barbora

With the benefit of hindsight, hairloss was probably the first symptom of hypo for me. I was going thru the menopause and was having an awful time. Couldn't put up with it, so bit the bullet and now wear hairpieces. Lots of info here

heralopecia.com/

This was my solution, my hair loss similar to Jackie's

wattzinternational.co.uk/

There is a solution to this - it's just facing it up and getting on with it; I knew my hair wasn't going to get any better; my mother had gone through this, too.

Don't feel helpless there are lots of things you can do if you feel your hairloss is temporary. I have a colleague who wears fake fringes that cost less than a fiver off e bay but have improved her wellbeing immeasurably. Wattz also specialise in micro bonded hair extensions which can look pretty good if your hairloss isn't too bad.

IMHO hairloss is amongst the worse of thyroid problems for women. It's fixable. Sort it and get on with the other sh*t thyroid disorders bring.

My best to you

snow31 profile image
snow31

Hi there, Sorry to hear you are suffering from hair loss. I too am and have suffered with it after being diagnosed Graves/Hyper last year. I also have very fine hair. I have lost it across the top of my scalp and receding from the front. I am currently under a Dermatologist who has recommended me take Iron and Vitamin C (I also take Vit D & B12 as low in them). He also told me to buy "Regain" (Menoxodil 2% solution) for woman and to keep perservering with it. I saw the Dermatologist on Saturday and I have to keep with this treatment for another 4 months before he can see if it is working or not. You cannot get it through NHS so direct buying is the only was - It costs around £20-£25 a bottle, but worth it if it starts to work. Google the internet for the best price to order. I also shampoo and conditioner my hair with a product (I buy it from House of Fraser, not sure where else) it is their Aveda range - Avanti (for thinning hair) - I find this gives your hair a bit of a thicker feel and has helped my hair too. Again it is quite expensive but I will try it and if it makes my hair look and feel better then worth every penny.

Hope you find a solution soon, you are not alone.

xx

snow31 profile image
snow31

Hi there, Sorry to hear you are suffering from hair loss. I too am and have suffered with it after being diagnosed Graves/Hyper last year. I also have very fine hair. I have lost it across the top of my scalp and receding from the front. I am currently under a Dermatologist who has recommended me take Iron and Vitamin C (I also take Vit D & B12 as low in them). He also told me to buy "Regain" (Menoxodil 2% solution) for woman and to keep perservering with it. I saw the Dermatologist on Saturday and I have to keep with this treatment for another 4 months before he can see if it is working or not. You cannot get it through NHS so direct buying is the only was - It costs around £20-£25 a bottle, but worth it if it starts to work. Google the internet for the best price to order. I also shampoo and conditioner my hair with a product (I buy it from House of Fraser, not sure where else) it is their Aveda range - Avanti (for thinning hair) - I find this gives your hair a bit of a thicker feel and has helped my hair too. Again it is quite expensive but I will try it and if it makes my hair look and feel better then worth every penny.

Hope you find a solution soon, you are not alone.

xx

vgam profile image
vgam

I too have issues with hairloss. It did improve with high dose vit D but it's back to shedding loads again.

I take biotin e primrose. ..just started silica. Unfortunately nothing is working for me...

Barbora83 profile image
Barbora83 in reply tovgam

Hi, thanks for your reply! My vitamin D result is 26.0 ng/ml

Recommended value start above 30. Is it low? What high dosage of vitamin D did you take? How many mg? Can you recommend some product? Thank you

vgam profile image
vgam in reply toBarbora83

Hi there

mine was 30 so I was prescribed 20000u once a week for 8 weeks. My hair was back to pre thyroxine.

It's now starting shedding loads again and I'm at the stage where I'd rather be dead then deal with this rubbish.

Barbora83 profile image
Barbora83 in reply tovgam

Hi, I understand more than you think...hair issue is very distressing situation. At least for me as a woman. Can I ask you why u say nothing is working for you? If I understand correctly u have problem with thyroid? Did not medication make it better the hair loss?

Barbora83 profile image
Barbora83

Hi thanks for your reply, sorry ...last result of ferritin is 117ng/ml. Iron is 83 ųg/dl. Is it still low? Should I continue to take iron tablets? Somewhere I was reading the level of iron have to be above 90 and stable for at least for few months for hair to start to grow back. What do u think? Thank you

silverfox7 profile image
silverfox7

My D3 result was around 25 and I was put on 20,000 one day a week for 12 weeks then a maintenance dose daily of 800 IU When retested after the high dose my level had reached around 87 and after a few months of the maintenance dose it was in the low 90's so everything had gone well

Abbychaya profile image
Abbychaya

Things that have helped me with hair

Thyroid meds - since I've been taking firstly NutriThyroid then NDT I think my hair has improved a lot... but supplements too namely:

Biotin: a high dosage i.e 500mg (Hair skin and nails complex from amazon)

Iron levels - only when my ferritin reached the 40s and above did my hair stop falling and start growing

protein - eating more lean meat/fish at every poss opportunity

fish oil omega 3

Good multivit (I use Vitabiotics Wellwoman)

have also been using a product called Foltene - not sure if it has contributed but definitely getting some growth around the hair line, you are meant to use it for three months continually, then do a maintainence dose..

good luck!

Abby

Paulasams profile image
Paulasams

Hi Barbora

Fully understand your distress. To stop this and repair brittle nails, I was advised not to use pantene shampoo and take a daily dose of vitamin B7 also known as vitamin H. It is working.

Hope this helps.

Kind regards

Paula.

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