Hair loss

[Ginger-bread]

Does anyone else’s hair come out ? Mines falling out in clumps when I wash it or brush it, got up this morning it was all over my pillow, was diagnosed overactive in April, went underactive on carbimazole and I’m now on block and replace and see consultant on 17th October.

[Hidden]

My hair had been falling out too and is like straw

I’m overactive

Nothing’s making any difference to mine

The little follicles on the end are like batons and that means they are dormant seemingly even though my hair is growing very slowly

I was diagnosed this February

From what I have read your bloods need to be balanced and in euthyroid state and hair should come again

I must admit it is frustrating and feel a bit down about it at times

It’s a very strange disease that affects all of the body

The only thing is it’s not harmful and just have to be patient ❤️

[Ginger-bread in reply to Hidden]

Yes it’s awful though, I will mention it to consultant when I go, thankyou x

[Mary-intussuception in reply to Ginger-bread]

Please don't try the caffeine shampoos as they can be very harmful.

[Mary-intussuception]

Yes. It's a Hypo symptom. Let's hope it grows back when your medication is stabilised. Remember to tell Consultant (list all new symptoms as they occur & note date).

[Ginger-bread in reply to Mary-intussuception]

I’m not sure if it’s hypo or hyper symptom. , some seem to get it hypo and the others hyper, but I am going to mention it to consultant when I see him, and thankyou x

[Mary-intussuception in reply to Ginger-bread]

Sorry, I thought you meant it had only just fallen out since you went Underactive due to overmedication for Hyper. You do seem to have lost a lot. Hope it grows back soon. I've just lost more eyelashes in last few days and forgot to tell my Consultant this morning !! Even though I had it written down! But I've had medication adjustment anyway.

[Ginger-bread in reply to Mary-intussuception]

No it’s only just started a few weeks ago, only my tsh out of range at the min that is 0.01 where as my t4 was normal at 15, but had to stop carbimazole for 7 days last week due to throat infection, so they could have changed since blood test over two weeks ago.

[Fruitandnutcase]

That happened to me. I was really hyper, took 20mcg carb for a month with no effect, then took 40mcg for two months. No blood tests in between and was really hypo by the time. Saw my endo. My hair cameout all over the place. It was horrible and drive me round the bend.

When I mentioned it when I saw my endo at my second consultation she said it was because I had gone from being very hyper to being very hypo. My body was on a massive rollercoaster.

It drive me mad. I tried everything - meadowsweet shampoo and conditioner, one of the Kerastase treatment shampoos designed for my sort of hair / scalp conditioner and Plantur 39 shampoo, conditioner and lotion.

My hair has improved, I still find my long hairs all over the place and some still falls out when I shampoo it but nowhere near as much as it used to.

I’m lucky that my hair is long and it is easy to deal with. I try to handle it as little as I can and I think that helps.

There are worse things at sea as they say, but I found it very upsetting on top of everything else. It was a straw that almost broke this camel’s back.

I think getting my thyroid stabilised was what really helped because by the time I finished my B&R treatment the hair loss had pretty much settled down. Hopefully yours will too.

Very good advice from Mary, I used to keep a diary / notes on how I felt daily, any new symptoms, my blood test results and medicines - basically everything, it was a useful thing to do as I could tell when changes happened, when I felt well on a certa8n dose or when I needed more levo etc. I could also look back and realise that even if I had a spell where I felt rubbish I had improved a huge amount.

[Hidden in reply to Fruitandnutcase]

Hearing from all you lot helps remind me that I’m not going mad !!!!! 🤣

[Ginger-bread in reply to Fruitandnutcase]

Thankyou, it’s frustrating seeing hairs all over my clothes and stuff, but like you say it’s nothing bad really, my levels are all over the place at the minute, I’ve started to get shakes again and palpitations so maybe my levo is too strong, I’ll find out at next blood test, thanks for the reply 😊

[Hidden in reply to Ginger-bread]

Sending hugs

Hope things settle for you soon x

[Ginger-bread in reply to Hidden]

Thankyou 😊

[Fruitandnutcase in reply to Ginger-bread]

Maybe not, I found that every time I needed an increase in my levo I got hyper symptoms back again - I was sure I was becoming hyper but someone on here suggested that I was actually needing an increase in levo and they were quite right on that one. I got an increase and things went back to normal until a few weeks later - same hyper sympt9ms back again - I needed another increase and sure enough the hyper symptom ms disappeared again. After a year and before I stopped altogether I was taking 40mcg carbimazole and 100mcg levothyroxine.

That’s where keeping notes on my blood levels, doses of meds and how I felt all came in really useful.

[Ginger-bread in reply to Fruitandnutcase]

Really, I’m on 100mg levo and 40mg carbimazole, sometimes I seem to have hyper symptoms but then other things make me think I’m hypo.

[Fruitandnutcase in reply to Ginger-bread]

Have you had your antibodies tested and what did they find?

[Ginger-bread in reply to Fruitandnutcase]

Yes but I won’t get my results until I see consultant in October.

[Fruitandnutcase in reply to Ginger-bread]

That’s a bit annoying. Make sure you get a copy of them all with their lab ranges. You are legally entitled to have them if you live in the U.K.