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.
Hair loss - Hypothyroid?
Child hair loss continues 
Hashimotos and Hair Loss Help!
Hashimotos hair loss 
Alarming hair loss happening
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
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.
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.
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.
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 🦋💚🦋
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.
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.