Hair Loss: Hi everyone. Hope you are all well... - Thyroid UK

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Hair Loss

FETIHOGLU profile image
23 Replies

Hi everyone.

Hope you are all well.

My health story is long and horrific. But will try to be brief.

In 2018 i was misdiagnosed with graves' disease. The carbimazole (20mg) wrecked my thyroid. (and other organs...)

Since 2019 Dcotors have been trying to get me to go on Levothroixne - my thyroid is small and damaged and of course not working.

I finally gave in and have been on 25micrograms for 3 months. But my hair is falling out again.

This happened on the carbimazole (20mg) but that was only one of the adverse reactions I had to that drug.

I have no choice really with the levothyroxine - my thyroid doesn't work. My Doctors have been clear since 2019 - it will only be a matter if time I have to be on this drug for life.

i am lost. My endocrinologist has said the hair loss may stop - it may be other factors (it's not no other substantial change to my health)

Anyway my question is: Has anyone experienced hair loss on this drug and does it stop? I already lost a substantial due to the carbimazole in 2018. It never really grew back after that wrecked my health - but the hair loss stopped after i stopped taking the carbimazole i should never have been on.

I am not on any other meds. i am 42 years old and female.

Thank you all.

23 Replies
1tuppence profile image
1tuppence

You feel lost...quite understandably, yet you have found this forum, and you will be led by knowledgeable, experienced people, to find your way to better health.

Do you have any blood test results you could share on here?

Welcome x

FETIHOGLU profile image
FETIHOGLU in reply to 1tuppence

I don't at the moment. (at my sister's house). I heard that the brand change might help? but how does one even navigate that? Is there a brand known for causing this? I am on Wockhart. One Dr told me the brand thing was "an urban myth" my sister's friend swears it made a change to her mood. I really am lost.

1tuppence profile image
1tuppence in reply to FETIHOGLU

No, you feel lost, yet you are not lost.... you are here, and help will come :-)

The Dr who told you "the brand thing is an urban myth" is mistaken. If you feel up to it, you can check out my recent Posts where I've raised this question, and many replies suggest that Dr needs to educate themselves to look after their patients properly. Brand changes do not simply affect thyroid patients.

Do you have any idea of what your Vit D, B12, folate and ferritin levels are like? For good thyroid health they need to be optimal, not merely in range.

I'm sure others more knowledgeable than me will be along to help you soon.... If you can give any blood test results you have that help can be more directed for you.

FETIHOGLU profile image
FETIHOGLU in reply to 1tuppence

I will check. But I am always on borderline for Vit D or "in range"

B12 always good.

But the hair loss has only started within the three months of Levothyroxine.

It's an impossible balancing game.

I also can't take too much medication. Post Carbimazole one of my Kidneys does not function, for that i have to wait and see how overworked the others get.

Thank you for your kindness. I wish medics were more open and robust.

Regenallotment profile image
Regenallotment in reply to FETIHOGLU

hey you , welcome 🤗

Follow advice to slowly slowly raise your Levo dose. Every 8 weeks I’ve gone up 25mcg after blood tests (private) shared the info with NHS GP. My hair was filling the plughole 12 months ago, but after a series of dose increases, diet and vitamin changes it’s definitely thicker, glossier. I’m now on 100mcg. But take it slow, it takes ages for the body to adjust.

Have you had your antibodies tested to know if you have Autoimmune Thyroid Disease ( Hashimoto’s)?

(I have Hashimoto’s and would have presented symptoms of Graves if anyone cared to diagnose me (as opposed to gaslighting me as a lazy drama queen hypochondriac) as a teen).

I was very much of the opinion my super healthy diet of fresh home grown veg etc was nutritionally adequate until this forum proved otherwise.

Highly recommend the Medichecks £86 thyroid antibodies and vitamins home blood test if you can stretch to it, currently 25% off with Black Friday code Friday. Post results here and you’ll have a pile on of advice from us all 🦋💚🦋

FETIHOGLU profile image
FETIHOGLU in reply to Regenallotment

Your question is key to my condition.

When I was was on the carbimazole - which was wrong for me - i collapsed on this drug the way it crashed my thyroid from over to under in weeks. I had tested negative for ANA. This they only worked out after the adverse reaction I had.

Now, my thyroid and health have been so wrecked I test positive for ANA.

My endocrinologist has claimed the ANA result is non specific.

I don't have other thyroid symptoms and never did.

Fruitandnutcase profile image
Fruitandnutcase in reply to FETIHOGLU

Urban myth my foot! What an idiot.

I was told that when I asked an endocrinologist to test my vitamin D! He said ‘ Why is vitamin D so fashionable these days. Everyone wants it tested. If you can bring me proof there’s anything in it then I’ll test it’. By the time I got there next appointment he has moved on. You really have to wonder where some of those doctors get their strange ideas from.

After that I gave up begging for tests and now do my own home finger prick thyroid blood tests - I use a Medichecks one that tests vitamins, minerals, inflammation and antibodies as well.

You are definitely in the right place for support - you will be hard pressed to come up with a question that find can’t be answered by someone on here. Hair loss is very upsetting, it might not seem like a big thing to s9me people but it was for me. I had graves and became very hypo during my treatment - long story - but an endo said my body has been on a ‘roller coaster’ and once my thyroid levels (and I’ll add in vitamin and mineral levels) were good then my hair would dirt itself out which it did. It’s not as thick as it used to be but I’m ten years older now so who knows.

Good luck with it all, you’re in the right place.

Lalatoot profile image
Lalatoot

Welcome to the forum. Hair loss is common when your thyroid hormone and vitamin levels are low. Carbimazole would have lowered your thyroid hormone levels and being undermedicated hypothyroid will mean that your levels are low.

It is not the replacement hormones that are the problem. It is that your thyroid hormone levels are to low and you are not on a high enough dose of replacement hormones.

Have you got recent results for TSH, FT4, FT3, vita, B12, folate and ferritin? All these need to be at good levels for symptoms to resolve.

It is also not uncommon for folks who have underactive autoimmune thyroid disease (Hashimotos) to be wrongly diagnosed as being overactive and given Carbimazole. This is because hashimotos often starts with a phase that mimics hyperthyroid.

FETIHOGLU profile image
FETIHOGLU in reply to Lalatoot

I don't have Hashimots. i have "subclinical hyperthyrodism" (that's the latest diagnosis)

Lalatoot profile image
Lalatoot in reply to FETIHOGLU

How have they diagnosed that? If the Dr is going by your tsh results then he could be wrong. Have you had antibodies tested. Antibodies mostly can show what is causing the thyroid problem .If you put results of blood tests on this site then folks will help. There are a lot of folks who have had all sorts of thyroid issues on here.

Lalatoot profile image
Lalatoot in reply to FETIHOGLU

If you have hyperthyroidism why are you on levothyroxine? Do you mean you have subclinical hypothyroidism? In which case levothyroxine is appropriate.

SlowDragon profile image
SlowDragonAdministrator

Hairloss is frequently linked to low thyroid and low iron/ferritin

How old are you approx?

Standard starter dose of levothyroxine is 50mcg

However if you have been hypothyroid for long time it’s best to start slowly…..

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

What were thyroid results and ranges BEFORE starting on levothyroxine

Which brand of levothyroxine are you currently taking

Dose of levothyroxine is increased slowly upwards, usually in 25mcg steps, over at least 6-12 months

Levothyroxine doesn’t top up failing thyroid, it replaces it

ESSENTIAL to be on high enough dose, but we frequently need to start low and slow and increase steadily upwards

Guidelines on eventual dose levothyroxine required is approx 1.6mcg per kilo of your weight per day. Unless extremely petite likely to be on at least 100mcg levothyroxine per day

Meanwhile ESSENTIAL to test vitamin D, folate, B12 and full iron panel test for anaemia including ferritin

Have you had these tested ?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms

we see a small but steady stream of early stage Hashimoto’s patients misdiagnosed as Graves’ disease and inappropriately prescribed Carbimazole (nearly happened to one of our administrators too)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

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

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...

PurpleNails profile image
PurpleNails

Carbimazole works by altering the way the body uses iodine to produce thyroid hormone, it reduces levels cause while you take the medication,

It’s true there are rare cases where liver, pancreas & production of white cells can be affected its affect on thyroid is indirect.

Stop the medication & if the thyroid should return to how it was before.  

If you thyroid is now damaged & small now it’s either from a further different  treatment such as radioactive iodine or from autoimmune damage. 

Autoimmune thyroiditis also know as Hashimoto’s is often misdiagnoses as Graves as in early stage the destruction causes transient rises in thyroid levels. 

How long were you on 20mg carbimazole? 

Don’t think of levo as a drug, it’s a replace thyroid hormone & if your thyroid can’t produce enough T4 & T3 You need to replace them. 

Hair loss occurs when thyroid levels are not right & when nutrients are affected as a secondary effect of having thyroid issues.  EG low ferritin. 

What are your results?

You need 

TSH

FT4

FT3

thyroid antibodies 

TRab or & TSI 

TPO & TG.

These should have been tested to help confirm direct diagnosis? 

Also important to test 

Folate

Ferritin 

B12

Vitamin D

TSH is not a reliable measure doctors may be assuming your a sub clinically hyper based on low TSH.  thyroid hormones (FT4 & FT3) may tell a different story. 

tattybogle profile image
tattybogle

Hi Fetihoglu ... just to clarify a couple of things in case things get confused.

Sub clinical hypOrthyroidism .. and subclinical hypEthyridism.

'Sub-clinical' is basically just a classifications of how 'bad' the hypo/hyperthyroidism . it has nothing to do with what caused the condition . Eg:

Hashimoto's disease, (autoimmune) or thyroid removal ,or destruction by RAI, are what cause the hypOthyroidism ~ and if only the TSH is out of range while the fT4 is still in range, then its classified as 'subclinical Hypothyroidism' . (if both are out of range it's 'Hypothyroidism')

Graves disease (autoimmune) , or nodules, are what cause the HypErthyroidism ~ and if only the TSH is out of range while the fT4 is still in range , then it's classified as 'subclinical HypErthyroidism' (if both are out of range it's 'Hyperthyroidism')

To know whether you have Hashimoto's , TPOab (Thyroid Peroxidase antibodies ) are tested ..

To know whether you have Graves' , TRab / TSI (Thyroid Stimulating hormone Receptor antibodies / Thyroid Stimulating antibodies) are tested.

ANA antibodies are not diagnostic of Graves

Sometime Hashimoto's Starts with an initial hyper phase, which can be mistaken for Graves if they don't test the TRab / TSI to make sure of Graves diagnosis.

If you were recently started on Levo, the reason will be because your TSH / fT4 results were sub -clinical hypothyroid / or hypothyroid at that point , not sub-clinical hyperthyroid , GP wouldn't (.....shouldn't ) prescribe Levo for someone whose TSH / fT4 were sub-clinical hyperthyroid )..... you wrote 'latest diagnosis is sub-clinical hyperthyroid' . wondered if was that a typo ? or did you mean that is what you were told you had originally ? ...

Hope this is helpful ,rather than more confusing ... i know it's all a bit much sometimes when you first post a question,,... but don't worry ,things will eventually make sense , it just takes a bit of time to understand it all.

SlowDragon profile image
SlowDragonAdministrator

I finally gave in and have been on 25micrograms for 3 months. But my hair is falling out again.

As 25mcg is only half the standard starter dose levothyroxine, you’re almost certainly ready for next dose increase up to 50mcg everyday

Bloods should be retested now

Book early morning test and last dose levothyroxine 24 hours before test

Come back with new post once you get thyroid and vitamin results

assuming you need next 25mcg dose increase

Possibly initially increasing to 25mcg/50mcg on alternate days for first 6-8 weeks before going up to 50mcg every day

FETIHOGLU profile image
FETIHOGLU

Thanks. Subclinical hyperthyrodism is the only diagnosis. I have a very rare form apparently. I have to have a diagnosis in part because my case is a legal one. That is the only confirmed diagnosis they give me. Because all others have been ruled out.

I will check my blood work and email when home on Monday.

But no matter what I have to be on Levothyroxine for life (have started on 25micrograms) and just these three months have led to so much hair loss.

I don't know.

I did have a scan, i think everyone should get a scan.

My Dr told me my thyroid seems to be intent on destroying itself.

Another Dr (the first I saw after the misdiagnoisis) told me he never prescribes Carbimazole because it is a hard drug to tolerate no matter what the diagnoisis.

Who knows. I am so lost.

But thank you so much.

Witchinghour profile image
Witchinghour

You've had loads of great advice on this thread.

You keep saying you're lost but so many people have reached out to help you.

If you post your test results they can help more directly.

If you have subclinical hypERthyroidisn you absolutely shouldn't be on levo.

If you have subclinical hypOthyroidism you need an increase in your dose.

Best of luck.

FETIHOGLU profile image
FETIHOGLU in reply to Witchinghour

Thank you.

I do not have my test results because I am not at home.

I have subclinical hypothyrodism and am on 25 micrograms.

Witchinghour profile image
Witchinghour in reply to FETIHOGLU

If your Dr said your thyroid is destroying itself then it sounds like you have hashis.

If you want to get better you need to read and learn about hypothyroidism and how to treat it and become your own advocate.

Find your fire and don't let the medics keep you unwell.

FETIHOGLU profile image
FETIHOGLU in reply to Witchinghour

Hashis has been rules out. Along with graves'

I had no symptoms when misdiagnosed in 2018.

The issues i have now are due to my thyroid and body being wrecked by the carbimazole. It is a long story.

I just wanted to know about hair loss on Levothyroxine (25micrograms)

Witchinghour profile image
Witchinghour in reply to FETIHOGLU

Likely because you're on too low a dose. But without test results noone can advise properly.

Would need to see results for ferritin, B12, folate,and Vit D alongside TSH, FT4 AND FT3.

Gingernut44 profile image
Gingernut44 in reply to FETIHOGLU

Is your diagnosis sub clinical hypErthyroidism or hypOthyroidism. You appear to have told us both.

shaws profile image
shawsAdministrator

I have lost my hair but it is due to another autoimmune condition and that's called Alopecia Areata. Sometimes it grows back only to fall out again.

nhs.uk/conditions/hair-loss/

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