Levothyroxine causing hair loss??: I was... - Thyroid UK

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Levothyroxine causing hair loss??

Smudgey1954 profile image
29 Replies

I was diagnosed with hypothyroidism at the end of August last year and was put on levothyroxine (50mcgs every other day). My TSH levels were crazy - it was 36!

Around October time, I started noticing my hair falling out. It was only a bit in shower. I didn’t have any issue with hair loss prior to taking the medication. I’d read online that it could cause temporary hair loss, so wasn’t too bothered. However, over the past few weeks, it has increased hugely. It comes out in the shower, when I brush it and even when I touch my hair! It’s entirely distressing as I have always had really thick hair. You can now see my scalp through my hair and my crown is visible.

My TSH had gone up at my last blood test (it’s around 8 after being around 5 in November, which I know is high), so I’ve increased my dose now, however the hair loss isn’t stopping. It’s just getting worse and worse. I’ve also been told by my doctor to take iron supplements as whilst my ferritin levels were normal, there were towards the bottom end of normal.

Could it be the levothyroxine itself that is causing the hair loss? And if so, why? It says online that it can cause hair loss and that it’s normally transient but it doesn’t say anywhere why this happens.

I have ordered a full thyroid panel but I don’t currently have info on T3 levels etc.

Anyone has similar stories to me and what did you do to fix it?

Thanks x

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Smudgey1954
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29 Replies
RedApple profile image
RedAppleAdministrator

Smudgey1954, Your hair shedding is more than likely the result of being hypothyroid for a significant length of time. Thyroid hormone is needed by everything in the brain and body, including hair growth. When there is insufficient thyroid hormone, the hair follicles die off. When you increase thyroid hormone levels by taking hormone replacemen, the dead hair falls out, in readiness for new hair growth that is enable by the increased thyroid hormone.

Smudgey1954 profile image
Smudgey1954 in reply to RedApple

Thanks for your reply here. I’m just confused as to why it’s only started after taking the medication and not before? I imagine I was hypo for a while before August as well, so it seems a bit coincidental that it’s started after taking it.

RedApple profile image
RedAppleAdministrator in reply to Smudgey1954

I know, it is confusing isn't it. Many of us have been through the very same thing. It's scary seeing all that hair clogging up the the shower and bath plughole, and falling onto the floor. And it's demoralising seeing our once luscious locks disappearing.

It is the increase in thyroid hormone (that's what levothyroxine is), that's triggering things to actually happen. To put it bluntly, if you had remained severely hypothyroid for a lot longer, your hair would probably fall out eventually due to the follicles dying off, but it would not re-grow. But now you're on replacement thyroid hormone, your dead and dying hair will fall out to make room for new hair to grow again.

thyroiduk.org/related-condi...

DelicateInput profile image
DelicateInput in reply to RedApple

Many thanks for the explanation. I had this problem for many years but every time I asked anybody, eg friends, the hairdresser, they thought my hair looked fine. Since I started on Levothyroxine last March, this reduced and there is now very little falling out. I was always buying stuff to unblock the shower and used to get masses of hair on the hairbrush and in my hoover. I was always untangling it from my Dyson. It does not happen any more. I have very fine frizzy hair which I straighten. It can look bushy so it was not obvious what was happening.

I had all sorts of issues during the 20 years I had a raised TSH (6.5-7.5) but the NHS always said this was normal whilst saying the normal range was below 5. Despite all the symptoms - weight increase (from 8 st to over 10 st), memory loss and poor cognition culminating early last year in a goitre with increased b/p and cholesterol - I still could not get treatment without going private. I now take 100/day and these issues are all resolving. I have never felt the cold - so the NHS said the thyroid must be OK! I sweat a lot.

RedApple profile image
RedAppleAdministrator in reply to DelicateInput

It's quite staggering how ignorant the medical profession still is about the whole subject of thyroid hormones. So many of us have suffered needlessly for years because of their total lack of understanding, and willingness to listen to their patients. When it comes to symptoms of thyroid hormone imbalance, we know from reports by members of this forum that there's no 'one size fits all' formula. Not for symptoms nor blood tests.

DelicateInput profile image
DelicateInput in reply to RedApple

Thanks. GPs rely on what is advised by NICE and their local health authority. I had blood tests initially every six months because repeats were advised by the lab who said "no action needed". The GPs also told me that they had many many patients with similar readings to mine so they could not single me out and prescribe levothyroxine. The NICE website says it is not cost effective to treat anyone with a TSH below 10 because there are no symptoms!

Smudgey1954 profile image
Smudgey1954

Ok, thank you for this. This gives me hope that it will improve! But yes, as you say, it is entirely demoralising. This has been the hardest part of being diagnosed, for sure.

helvella profile image
helvellaAdministratorThyroid UK in reply to Smudgey1954

I'll add a mention of RedApple so she gets told of your reply. :-)

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking

75mcg everyday?

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

ESSENTIAL To test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common when hypothyroid

Low iron and ferritin often linked to hairloss

what’s your diet like

Are you vegetarian or vegan

all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Smudgey1954 profile image
Smudgey1954 in reply to SlowDragon

thank you for such a detailed response. I am seeing a private functional medicine doctor soon, so will make sure I get the right tests x

SlowDragon profile image
SlowDragonAdministrator in reply to Smudgey1954

Get tested BEFORE consultation

It’s not clear if you are now on 50mcg a day or 75mcg a day

Either way you are almost certainly not on high enough dose levothyroxine

50mcg is the standard STARTER dose

Levothyroxine doesn’t “top up’ failing thyroid. It replaces it

Important to increase dose as fast as tolerated

Bloods should be retested 6-8 weeks after being on 50mcg

Dose increased to 75mcg ……wait 6-8 weeks and retest

Etc etc

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

Approx how much do you weigh in kilo

Likely eventual dose levothyroxine required is approx 1.6mcg levothyroxine per kilo of your weight per day

So unless extremely petite, likely to need at least 100mcg levothyroxine per day

Have been left too long on only 25mcg levothyroxine it’s highly likely your vitamin levels are low

If you have autoimmune thyroid disease usually diagnosed by high thyroid antibodies then trialing strictly gluten free and dairy free diet always worth doing

But get coeliac blood test done BEFORE cutting gluten

And at moment most important thing is to get dose levothyroxine increased and vitamins optimal

Jazzw profile image
Jazzw

Just so I’m sure I’ve got this right, you were on 50mcg every other day—so 25mcg a day? For all that time? Your doctor doesn’t seem to know a lot about how to treat hypothyroidism!

How much are you taking now?

Smudgey1954 profile image
Smudgey1954 in reply to Jazzw

Yeah, I was on 50mcg every other day as my TSH kept coming down - came down from 36 to 5. But then yeah, at my last blood test in December, it had gone up to 8mcg. So, I’m taking an extra dose a week now. I definitely need to take more than this too I think but my body has been extremely sensitive to the medication, so I’m ok with taking it cautiously, although, yes, I really want my hair loss to stop!!

Smudgey1954 profile image
Smudgey1954 in reply to Smudgey1954

sorry, not 8mcg. TSH is 8.

Jazzw profile image
Jazzw in reply to Smudgey1954

Oof, yes. A TSH of 8 would suggest there’s quite a way to go with dosage increases.

The problem with being on too low a dosage of levothyroxine is that it can make things worse, not better. Levo doesn’t top up a failing thyroid, it replaces the hormone. For many on too low a dose, the amount of thyroid hormone produced by your ailing thyroid is higher than that prescribed, leaving you in a worse position than you were to start with.

When you say you’re sensitive, what happens when you increase dosage?

Smudgey1954 profile image
Smudgey1954 in reply to Jazzw

Heart palpitations and leg weakness. I ended up in A&E after 2 days when I first started taking it. I was on 50 a day and my body couldn’t cope.

I’m now taking it every other day and then three days in a row at the end of the week (e.g Monday, Wednesday, Friday, Saturday, Sunday etc). So far, the three days in a row have been ok, so gonna keep up with this and then get tested again and probably increase it, I imagine to 50 a day?

I totally understand that my thyroid levels need to be normal to help my hair, so I’m trying to be patient in the meantime. I’m also getting tested (privately) for vitamin and iron deficiencies. I just hope it does stablise and it’s not the medication itself my body dislikes.

Thank you so much for your replies!

Smudgey1954 profile image
Smudgey1954 in reply to Jazzw

also, that’s interesting - I didn’t realise it didn’t top it up? My TS4 was borderline when I was initially tested - the GP said they probably wouldn’t have medicated me, had my TSH not been so crazy. So it doesn’t add to it, it completely replaces it? Even if my thyroid is still producing T4?

Pearlteapot profile image
Pearlteapot

I also had no problems with hair loss until I started taking levothyroxine. In fact all my hypothyroid symptoms became much much worse. This is because I was woefully under medicated. It’s taken a year to get anywhere eat the right medication for me. My hair is still falling but recently it’s texture has become stronger, glossier and more like it was before I started levothyroxine. While I was under medicated it was thin and lank and greasy. I’m hoping that the change in texture is a sign of something, an outrider to the end of hair fall. I’m waiting to find out. It’s taken a long time. There is no easy solution. You must get the right dose.

Blearyeyed profile image
Blearyeyed

Definitely request the blood tests that Slow Dragon suggested .Vitamin B 12 or Folate deficiency can both cause low iron / Ferritin and cause various symptoms including hair loss.

They can also reduce your absorption of nutrients and your medications if they are low or deficient which means you could be absorbing less of your meds than you require.

They can also impact on thyroid function in general.

Fliplaar profile image
Fliplaar

hi Smudgey1954

I just wanted to say don’t give up hope yet, it’s a bit of a long game but as others here have recommended with regular testing and time you eventually get your levels in the right zone. If you combine that with getting your vitamin and Iron levels in the right place your hair will come back in x

I had the same problem, it turns out I was deficient in Iron and B12 and I had to try a few different brands of Levothyroxine because not all of them agreed with me. My hair stopped falling out when I sorted through all those things step by step. It’s back to normal now x

It’s difficult at the present time whilst it’s coming out, there’s a lot of emotion tied to our hair ❤️ but people on here are so well informed they’re brilliant and they will help you the best they can x

Smudgey1954 profile image
Smudgey1954 in reply to Fliplaar

Thank you so much for your reassuring words. It means a lot to know there are people who have had similar experiences to me and now it’s ok.

My god, you have to be resilient with hypothyroidism!

Fliplaar profile image
Fliplaar in reply to Smudgey1954

that is definitely the right word for it 😁

Blobby1234 profile image
Blobby1234

Just adding my twopennorth for ballast - every time a GP lowers my dose bc TSH comes back low (🙄) I count 4 weeks and say goodbye to my eyebrows and collect a tumbleweed of hair out of the shower plug.

Sharoosz profile image
Sharoosz

Another possible cause of extreme hair loss is a fever. I had covid over a year ago a three months later my hair started falling out. I was freaked out and then the thought came to me that maybe it was a delayed side effect and sure enough, a week long fever was the cause. My hairdresser said she had a client who lost 70% of her hair. She told us both to put aloe vera on the scalp and leave it (extract better than gel for obvious reasons.) We did and had good results. (my stick-straight hair even started to flip a bit after it came back). You might also read Izabela Wentz's books (she's a pharmacist with hashimotos, who has read the literature thoroughly, also lost a lot of hair andhad to figure out what was going on). Don't give up until you find the help you need. Hope it comes back soon.

Smudgey1954 profile image
Smudgey1954 in reply to Sharoosz

I did have a fever in November but it only lasted like, 2 days. So I’m not sure that is the cause? I did have covid in September as well though but again, wasn’t too ill. I’m thinking it’s more likely to be my meds / thyroid that’s the issue, although I don’t know?

Sharoosz profile image
Sharoosz in reply to Smudgey1954

It might be the thyroid, which is why I suggested wentz's books. And it might be something else. Hope you find your root cause soon.

eeng profile image
eeng

I have been losing hair for the last year, and it turns out my ferritin is low. As soon as I started taking iron (eating pate because the iron tablets didn't suit me) the hair loss stopped. Hope something works for you too. My iron levels are now better than they have ever been and I hope my next ferritin result is better too. I am a regular blood donor so possibly that's why.

Eddie83 profile image
Eddie83

Side effects of using levothyroxine include hair loss, which is supposed to be temporary (according to the manufacturers). What I can tell you is that severe hypothyroidism causes hair loss which can become permanent. So I would give the levo time to work, I would expect that the hair loss will eventually stop and hair will start to grow back.

Charles33YZ profile image
Charles33YZ

Alec Baldwin suffers from alopecia has since childhood. Alec received his first hair transplant in his early twenties. Alec Baldwin received a second hair transplant in his late forties. Hope for all who suffer!

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