Have any of you had such a lot of hair loss that you need a wig? Or, does it stop at some point? Mines been thinning for a long time without noticeable hair loss after washing, combing. Now i am too scared to wash it as the amount of hair on comb almost brings me to tears 😢. I'm over active, gone under active due to over medication so now on a 6 week wait for blood test, unmedicated till result.
Hair loss: Have any of you had such a lot of hair... - Thyroid UK
Hair loss
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TwigwithaWig
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SlowDragonAdministrator
Welcome to the forum
Please add results from BEFORE starting on Carbimazole (and propranolol?)
And current results and ranges
Always test early morning and ideally only drink water between waking and test
TSH, Ft4 and Ft3
Have you had TSI or Trab antibodies tested to confirm Graves’ disease
Also recommended to test TPO and TG antibodies for Hashimoto’s (and can be slightly raised due to Graves’ disease)
Hair loss
EXTREMELY important to test full iron panel test for anaemia including ferritin
Also zinc
Plus vitamin D, folate and B12
Thankyou for your reply, here are the tests I've had, one before carbimazole and 1 in May and latest in August.
Black and white
Vitamin D was severely deficient
What did GP prescribe in December 2022
You should have been prescribed LOADING dose
That’s 300,000iu in total over 6-8 weeks
And IMPORTANTLY retested at end of course …..and advised to supplement daily in perpetuity
How much vitamin D are you currently taking
Essential to retest twice year
Hi, i was prescibed 10 weeks of a high dose (chemist had to order) of vit D, then never mentioned again.
so it’s HIGHLY likely your vitamin D is now far too low again because you should have been advised to supplement daily
How much is trial and error and varies from person to person, but typically anyone with thyroid disease needs higher dose vitamin D than average
Perhaps 2000iu-5000iu per day as a maintenance dose, once vitamin D has been improved on loading dose
LOADING dose of 300,000iu is equivalent of 7000iu per day for 6 weeks
To work out how much vitamin D you need daily to keep vitamin D at least over 80nmol minimum ……Test twice yearly via NHS private testing service
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Trying to add results
Black and white
So very hypothyroid
Likely low vitamin levels as direct result
Hi, yes felt ( a more severe word for extremly😳) tired ect. I asked the endocrinologist (only contact is by phone, few minutes) if i should take vitamins? She said your problem is thyroid but if you want to take some that's up to you. So after reading posts I'm taking: Vit D 75pg Vit B12 250pg
Iron 14mg
Vit C&Zinc 100mg &15mg
Magnesium 375mg.
My blood test is in 2 weeks. She states in her letter she will test other hormones as well as thyroid. I will email her secretary tomorrow explaining the distress my hair loss is causing me incase there's another test needed. I know from experience it will fall on deaf ears, but at least i will have tried.
I would strongly recommend you test vitamin D, folate, B12 and ferritin yourself if GP won’t do for you BEFORE consultation with endocrinologist
Ideally full iron panel test for anaemia too -
Again if GP won’t use Medichecks
Stop iron supplement 5-7 days before test
Test early morning and only water between waking and test
Medichecks iron panel test
medichecks.com/products/iro...
cheapest way to test all four vitamins is via Thyroid test
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(But Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
come back with new post once you get results
We see many many thyroid patients left years or decades with totally inadequate vitamin levels as direct result of inappropriately managed thyroid disease
I'm really sorry you are having to deal with hair loss on top of thyroid issues. Hair loss is a known side effect of over active as well as underactive thyroid, but it can also be a side effect of Propranolol in some people. Is there an alternative you could take instead?
Hi, thankyou for replying. I'm not on Propranolol. I am a hairdresser but not a scientist or medical, so am quietly, cross fingers, hopeful it will stop falling out soon 😔, if not, i will be extremely distressed x
shawsAdministrator
I have developed hair loss too. At present I have no hair at all.
Initially it dropped out and then very slowly grew back. Now - no hair at all and have bought a wig and a few people who don't know I have no hair compliment me on my hair.
Hi, thankyou for replying. Firstly i am sorry you have no hair. I can't begin to know how you feel/felt in the beginning, or now? I think if i had a wig on stand by i might feel a bit happier. I am a hairdresser, but not medical or a scientist as i posted to someone else. Just a woman loosing hair😪. Are you able to share details of where you bought your wig? X
I have bought a Belle Tress wig (very fine and natural) from Mimo Wigs. They do have discounts of up to 30% at times. Mind you, they are sent from the US, so do take some time to get here. Best of luck to you 💛
Thankyou for that. I bought one this week. I do like the sound of yours, fine and natural. Mine is too thick, but have managed to trim the front to as close to my style as possible, good luck to you to xx
I believe where I purchased has now closed due to lockdown. I tried to connect with them about 2 weeks ago.
The following link may be useful and you can return to them if you don't like.
naturalimagewigs.co.uk/Clea...
Natural image wigs are very natural looking when worn. You could order 2 and you can compare and select the one you prefer.
They are very easy to keep in good condition and people who don't know me don't realise I'm wearing a wig.
Thankyou for this information. I have visited a salon and bought a wig this week. As we don't know when the hair will stop falling or even start falling again in the future, I'm happy to have this wig even though I'm not 100% comfortable with it. Best wishes to you xx
Hi Shaws, Have you seen a trichologist about that? I have had a lot of problems over the years with my hair loss. Finally I went to a trichologist who was able to diagnose my issues and has helped me. I discovered I had a few issues that needed addressing and it was not all down to thyroid issues as I had thought.
Thank you for your response limonene7 re consulting with a trichologist. I will consider it. I have a number of autoimmune diseases.
My diagnosis is 'polyglandular autoimmune disease No.3.'
Bless you, Shaws, you have a lot on your plate to deal with. It might be worth dropping a trichologist an email about your condition sometime and see what they come back with. x
I had treatment in the past.
Doctor put injections into scalp and after a few weeks hair began to grow again.
After some months hair disappeared again.
Husband was with me whilst having injections etc at the first appointment and after we came out of the surgery, he said don't get any more injections if your hair falls out again. He couldn't bear watching injections into scalp.
Thanks for your advice and I might seek out a trichologist.
Hello Fedupoftrying and welcome to the forum :
I'm a little confused as on your bio you say the endo is talking about treating you with Radium Iodine - dependant on blood tests this week - is this Radioactive Iodine Thyroid ablation ?
This is generally offered when you have Graves Disease and positive and over range antibodies generally written as a TR ab - a Thyroid Receptor antibody reading - either Blocking or Stimulating -
and Graves is considered life threatening if not medicated with an AT drug.
You say you are not taking any Anti Thyroid drug - and that you couldn't get on with Carbimazole - so were you offered the alternative AT drug - Propylthiouracil - PTU - for short?
We do really need to see some blood pest results and ranges from when first diagnosed along with which ever antibodies were found over range and positive in your blood.
If you do have Graves Disease - we do now have some research papers that you might like to consider :-
This first one suggests that the longer the patient stays on the AT drug the better the long term outcome for the patient :
pubmed.ncbi.nlm.nih.gov/338...
This second research paper is suggesting that of all the treatment options RAI has the worst Quality of Life some 6-10 years post treatment and quite why it is still offered as a first line and sometimes only treatment in what we presume to be a health care system is concerning.
ncbi.nlm.nih.gov/pubmed/306...
I am truly sorry for your hair loss -it's demoralising - I had alopecia when 11 and very stressed taking the 11 plus exams - as I'm undiagnosed dyslexic - and eventually I was diagnosed Graves when 56 and told I was to have RAI thyroid ablation the following year as the AT drug was too dangerous to stay on long term - I was well on the AT drug and deeply regret taking this toxic substance.
The hair loss could be due to low iron levels ?
Do you have any blood test results and ranges for ferritin, folate, B12 and vitamin D as these are the 4 key core strength vitamins and minerals that need to be maintained at optimal levels to support you through illness rather than having low levels and unnecessarily compromising your health issues further.
Hi pennyannie, thankyou for replying, and offering so much info. I definitely don't like Carbimazole, but i wasn't taken off it because of my list of side effects ect, Endo kept me on it😳. She talked about radium iodine as next step if the last blood test wasn't to her liking. So, I read up on it and thought, Blimey😳😳😳. Luckily there was no mention of it on our appointented 2 minute phone call. The blood test showed under active now, over medicated, so she told me to stop taking it straight away. So on nothing. Blood test in 2 weeks, so see what she says then x
OK - so what I think I've read from these print outs is that you have a nodule/s causing the hyper type symptoms - and the dose of the AT drug - Carbimazole, which blocks your own daily thyroid production has resulted in your T3 and T4 levels falling too far through the ranges with you suffering with the equally disabling symptoms of hypothyroidism.
Hopefully now you have stopped the AT drug your own daily thyroid production will slowly improve and your T3 and T4 build back up and some of your symptoms relieved.
Obviously your vitamins and minerals will likely have nosedived through their ranges and likely need supplementing when we have the necessary blood tests and ranges to see what's going on.
None of the forum members are medically qualified but have had to become their own best advocates as we have all been ill and through determination and support from fellow members on this forum supported by the charity - Thyroid uk - thyroiduk.og we have managed to reclaim back our health and come back on to help and support others.
Thankyou. I now have a wig. After 6 weeks off carbimazole i am now back to over active and on a different dose. I asked for my vitamins to be tested as you and others suggested and she did, all fine she says. I'm still taking the supplements for my own piece of mind x
Can you share with forum members the actual results and ranges that are said to be
' fine ' - so we can help and advise you of dose and strength of vitamin and minerals to buy for yourself - I'm afraid many of us arrang our ow private blood tests and self medicate as doctors are not routinely taught about vitamins and minerals.
Arrange online access to your medical records through your surgery - just ask for the necessary paperwork from the Receptionist - - if you haven't already as then you can see exactly what's been tested and the results and ranges whenever it suits you and not have to keep ' asking for permission ' :
Hi, I have had a lot of problems with hair loss which didn't resolve even after optimising thyroid meds and vitamins and minerals. I finally went to see a trichologist who diagnosed my issues and has helped me.
Can you tell us what other issues can be? How do you find a good trichologist? My hair is getting so thin it really upsets me that it keeps getting worse.
Hi, Issues can include nutritional (like vitamin and mineral deficiencies and lack of protein), hormonal, scalp diseases like organisms that cause dandruff etc, automimmune, pattern hairless (for example female pattern very common and effects at least 50 percent of women..minoxidil good for female pattern and trichologist can also prescribe various drops). Probably other issues but I'm not an expert. To find a trichologist, perhaps start with a google search for " Trichologist near me" and then check out reviews if available.
Hi Losing your hair is so upsetting. I know! As a hairdresser that must add to your distress.
For me what has helped is maximising my vitamins and minerals. My ferritin was low although just within range Gp was not interested. I saw a Trichologist who thought I had Lichen Planopilaris but this was found not to be the case following a review by a Dermatologist and scalp biopsies ( I paid privately). He diagnosed with Female patterned baldness. He also informed me that women over 60 years would not be prescribed Finesterade or Spironolactone?? To be honest I received some answers but he didn't seem that interested in my autoimmune conditions??? If Minoxidil was not effective then a hair transplant was possibly my only option according to him.
My Naturopath is not convinced feels hair will grow back once my T3/T4 improve. Currently titrating NDT. I have also completed a course of Ferrous Sulphate.
Wore a hair topper initially nobody noticed. However after 2 months of Minoxidil 5 daily my hair has stopped falling out excessively and there appears to be hair regrowth. Although it can take upto 4 - 12 months to see any results. I am now no longer wearing my topper. I now use a little hair fibre to cover some areas where you can see my scalp. I did have very thick curly hair. I have also restyled my hair slightly which helps make the hair on my scalp look thicker. Before the Minoxidil I would not have felt comfortable going out without covering my head.
Waiting to have my Zinc, Selenium, Ferritin and copper tested together with repeating my Advanced Thyroid Medichecks in next few weeks.
It may seem very overwhelming at the moment but just work through the information people have posted.
Wishing you all the best.
May I ask where you are getting tested for Zinc and copper?
Thankyou for that. It does help to know people here understand. Yes, it's a bit weird doing people's hair while i have to cover mine🥺. I've taken note of minoxidil and will goole, best wishes to you xx
Hi
Surprisingly my GP has agreed to carry out Zinc, Copper, Selenium and Iron. Initially the receptionist was ' No you don't need to have your Ferritin rechecked after finishing 3 months supply of Ferrous Sulphate '. I then asked to speak to a GP directly.
A week late I got a telephone call expecting a bit of a battle, I was prepared! Only to talk to a GP I have never spoken to before who was happy to repeat my bloods to check my Ferritin etc. I did have to email her the information regarding the vial to be used for testing Selenium however.
She did say that she probably wouldn't be the best person to analyse the results. 'No problem' I said 'I know someone who could do that '.
Good for you, well done. It shouldn't be a battle to get the tests we feel we need. I also talked a pleasant gp into testing my vitamins concerning my hair, all was good, so just wait for this dam thyroid to level out x
Some people suggest that Rosemary Oil is good for helping with hair loss. It might be worth checking it out, as it is a natural product. I have not tried it. Good Luck
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