What's your experience with hairloss?

[Jhgking]

I'm hypo and lost a lot of hair before diagnosis a few months ago. When I started Levo it got much worse for a while. It seems to have eased now but does your hair thicken again and return to normal if your levels are optimal?

[T808]

Also check ferritin. Low levels can cause hair loss as well. I've had lots of hairloss recently when I was overmedicated. It definitely got better as I got closer to where I need to be. I'm still not perfect but it's definitely thicker and not and limp/brittle.

[Jhgking in reply to T808]

That's good to hear that yours got thicker again! Interesting you say about ferritin - mine was extremely low at the last check. Trying to fix that too.

[twinkiegal]

I have hyperthyroid and have gone through several bouts of hair loss. I always thought it was the meds but now I have discovered that when my T3 and T4 are elevated, my hair falls out. When they get straightened out, the hair loss stops. And yes, mine always grows back and gets thick again!

[Jhgking in reply to twinkiegal]

Oh! So it's a hypo and hyper thing - sounds like the holy grail is those levels.

Thanks for sharing. Good to hear it grows back.

[Gilbo72]

I have had several hair loss episodes which have been so self destroying. I find it tends to happen after an ‘attack’ on my thyroid gland, where my gland feels swollen and sore. Seems to happen after certain types of illness/virus. (The last one being after my first AZ vaccine which I reacted badly too and felt really ill for weeks - other times have been after some types of upper respiratory infections). I find once the hair loss starts I just have to ride it out which can take several months and is hard to do, but knowing it will eventually slow, stop and reverse. I have naturally curly hair and can’t stand it when the new growth comes through as it goes all fuzzy!! I will always increase supplements/ nutrients and caffeine shampoo in this time to feel like I am doing something, but for me personally it tends to be a waiting game.

[Jhgking in reply to Gilbo72]

Thanks for the tip re shampoo. I didn't have a lot of hair to start with so it's really noticeable to me. I'm relieved to hear from you all that it can grow back.

Again. So interesting to hear about thinning after an 'attack' I was poorly over Christmas and pretty much all of January my throid was throbbing. I just put it down to the Levo as I'm quite new to it all.

[Gilbo72 in reply to Jhgking]

I think its difficult to work out what is causing it. Could be be being hyper, hypo, overmedicated, nutritional, hormonal, or external. Keeping everything on an even keel, finally enabled me to see, for me it was viruses. This was years after being 'stable' on levo though. In the early days it is hard to work out what it was. But I think with hair loss it can take months to resolve, and often is a delayed reaction.

[Jhgking in reply to Gilbo72]

It's good to be aware of all possibilities.... there's so much, isn't there, that can affect your overall wellbeing.

I found out the hard way that decongestants can interfere with your meds 😬

[Hamste]

Hi JhgkingI was diagnosed as hypothyroid 15 years ago as after all my hair fell out and I went to my gp to see why this happened. Sadly, my hair has not returned despite my thyroxine medication.

However, everyone is different so your hair may return. All I can say is that I have now got used to having no hair and there are worse things that can happen!

[Jhgking in reply to Hamste]

Yes. I did think after I posted that so many people on here have worse things to worry about than hair loss.

Is there a link between throid issues and alopecia do you know? Thanks for sharing.

[shaws Administrator in reply to Jhgking]

If we have one autoimmune condition, unfortunately we can develop others.

I have hypo, alopecia areata and pernicious anaemia.

[Fruitandnutcase in reply to Jhgking]

Ah, don’t think that, I think for many people hair loss is just the final straw. I found it really upsetting and I know a lot of people on here feel the same.

Everyone I came in contact would say oh no, you’ve got such thick hair but I knew when I washed it what used to feel like a thick ponytail became about as thick as a pencil. I actually got to the stage where I used to photograph it as it headed down the plughole and I’d fish it out and put it in little plastic money bags. The idea being I was going to take it with me to the surgery next time I went and the first person who told me my hair was lovely and thick I’d shove my little bars of hair where the sun don’t shine.

So although many people have a lot of awful things to contend with something like your hair falling out can be the final straw.

[Hamste]

All I know is that one symptom of hypothyroidism is hair loss. The thing is there are many people who are hyper or hypothyroid who have a full head of hair, so the explanation for that is a mystery. When I say there are worse things that can happen, I say that now 15 years down the line but this was not what I thought 15 years ago! Time passing has allowed me to accept my situation.

Best of luck with your journey however it turns out.

[shaws Administrator]

Unfortunately for me, I have another autoimmune disease called Alopecia Areata. I had to buy a wig because I have no hair at all for most of the year then it 'may' grow back. I used to have my first haircut around March each year but I have had no haircut at all for about 3 years now.

[Jhgking in reply to shaws]

I've considered a wig should it come to it. Do you find it itches?

[Lulu2607]

Hi Jhgking. Before being diagnosed and medicated in April 2021, I had very severe symptoms including dreadful hair loss. Not just scalp but body hair, eyelashes etc too., plus all the classic severe symptoms. ( Not surprising as TSH was 161 and there was no detectable T4.) My hair had stopped growing so as the old hair came out there was nothing growing through to replace it. It had always been fine and I kept it short so it was very noticeable. It was also very distressing as I had a job facing large numbers of people on a daily basis. Once I started on levo things slowly started to improve. I went to the hairdresser a couple of months after starting levo for the first time in a year (I usually go every six weeks). It was still not brilliant but was slowly improving. Two months later again it was a lot better and it has continued to grow and thicken up and now looks as good if not better than before. Everybody is different of course but I would say it takes a good few months on levo to see a real difference. My levo dose was gradually increased too which probably is also a factor to take into account as I started on 50mcg but now take 100mcg daily. I hope you see some improvement soon as I know how distressing the hair loss issue is.

[Jhgking in reply to Lulu2607]

Wow. Eyelashes too... you definitely had it worse than me. I can imagine that would be difficult dealing with people every day. It's very encouraging that you've recovered that loss!

I'm hoping I have the same success.

[BeeOrchids]

Hi, I am hyper and have had some hair loss like others. Also dreadful itching on my scalp which is part of being hyper I understand. I had my hair cut short as I found it looked better which helped with my self confidence. Avenno hair products were recommended by someone on here and I use the one for fine hair. It has helped a lot with the itching and I think my hair does look somewhat thicker now when first washed. It is all stress related I think which doesn't help with everything else thyroid related we experience.

I lost all the hair under my arms incidentally which is very slowly growing back after six months. So so my chin hairs which remain wiry and annoying!

[Jhgking in reply to BeeOrchids]

Oh, itchy scalp must've been horrible! The range of symptoms with thyroid problems just grows and grows the more I read.

I didn't know Aveeno did a hair range - thanks.

Now... under arm hair loss would actually be a bonus!

[Andie222 in reply to BeeOrchids]

Hello. I have a very itchy scalp. It was terrible when I was younger (before diagnosis) and it has returned in the last year. As far as I know I have never been hyper, but my FT4 is now very high (not FT3 though). Interesting.

[Jhgking in reply to Andie222]

Sorry to hear it's come back Andie. I hope you can find the reason....

I'm very new to everything thyroid but as I understand it the bit you need the T3 - maybe there's some issue with converting T4 to T3?

Good luck.

[Fruitandnutcase]

When I was being treated for Graves I went from being really hyper to being really hypo - didn’t have enough blood tests after starting carbimazole and I took that for three months before I saw a consultant. By the time I did get to see an endo for my first visit I was seriously hypo. At the first visit I was started on levo, my hair started falling out in handfuls, it drive me wild. I mentioned the hair loss when I went for my second endo visit and the endo laughed and said she wasn’t surprised because my body had been on as she put it ‘a roller coaster ride - massively hyper then massively hypo’.

The consultant assured me that once my thyroid was sorted out it would stop falling out and I suppose it did although it’s not as thick as it used to be before Graves, but then again I’m ten years older now 😉

[Jhgking in reply to Fruitandnutcase]

That would've scared the life out of me - it coming out in handfuls!

[Fruitandnutcase in reply to Jhgking]

🤣🤣🤣 Well maybe not quite handfuls but I used to watch the hair heading down the plughole and I had to spray my hands to get all the loose hair off them after I’d washed my hair and there was always masses of hair left behind on my hairbrush. I got to the stage where I didn’t actually touch my hair unless I had to. It was pretty horrible to be honest but it really didn’t help to have the practice nurse telling me I had lovely thick hair when I knew it was no longer lovely thick hair - it was long but it was no longer thick.

The other really strange thing was that Graves caused my hair to go silver right round the hairline. Now that looks good and I love it. My Italian hairdresser does too, he keeps telling me people would pay good money to get hair like mine and he shows it off to whoever else is in the salon at the time - he brushes it one way and it looks silver, then the other way and it looks brown.

[Jhgking in reply to Fruitandnutcase]

Loving the sound of the silver halo! 🤍

[elwins]

I have hair loss due to alopecia, runs in the family my mum had it, my hair has gone from being thick to being quite thin to not having any hair on certain parts. Just pay for a good hair cut. That’s how I manage, have had a under active thyroid for over 60 years. Best of luck in sorting it out.