I have graves disease and and am currently on my second round of treatment after relapsing earlier this year. Currently on 10mg of Carbimazole per day and over the last 6 weeks my scalp has been very sore to the touch and it feels like it's getting worse (If I brush a knot out of my hair I feel like someone has yanked a huge clump out!). I've been losing loadddddds of hair, this happened last time I was on treatment so I kind of expected it but the soreness is worrying me. Not sure if it's just an effect from having abnormal levels or whether it's an effect of the medication.
Any one else experienced this? x
I'm on the waiting list for a thyroidectomy...
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mrsthyroid
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Hello. The best advice is go to Elaine Moore's website. You can post a question and Elaine will respond. She is so knowledgeable about Graves. She has been truly amazing for me throughout the past four and a half years. Take care.
My story is similar, I was 51 I went to the doctors after finding a small patch of hair loss and eyelashes too. My thyroid was tested and i went on to levothyroxine since then after every hair wash my hair was shedding until it was less stressful just to shave the rest off! And stop the distress of seeing my long hair go down the plug....i thought straight away it was the medication so stopped but in the end I was advised to continue as my antibodies were attacking my thyroid. Now on 50mg and thyroid is about normal 3.1.... but still no sign of hair growth😣 53 now . Has anyone on here had the same experience and had hair growth after medication is settled?
I had a similar problem when I started treatment for Graves. I took 40mcg carbimazole for three months and by the time I saw my endo I had gone from being really hyper to being quite hypo. That started my hair loss. I mentioned it to my consultant and she said my body had been on a rollercoaster ride from hyper to hypo and that was why it was happening. Sure enough eventually when things settled down the massive hair loss stopped.
It drive me mad but no one seemed bothered apart from me. One nurse even said ‘but you've got lovely thick hair’. I knew that when I washed it and squeezed the water out, what used to be a good chunk of hair felt like a skinny little pencil.
I got to the stage I used to photograph the hair as it headed for the plug hole and I put each wash into a little bank money bag. I was going to take them all with my to my next consultation and just show them.
Someone on here recommended Meadowsweet shampoo and conditioner. It was made on the island of Skye, the original makers sold the company but this looks like it could be the same people baldwins.co.uk/skye-meadows...
I also used a Kerastase shampoo and conditioner that was very good but it was so long ago I can’t remember which one, you would need to go to a salon that deals with Kerastase for advice. I also use a bristle hairbrush now and I tend to handle my hair as little as possible.
What I did find which is amazing, the front of my hair right round my head went totally silver. If I brush it one way it looks totally silver, brush it forward and it looks brown. If I gather it into a French pleat it is a silver and brown French pleat. So that’s been a lasting positive. Every time I go to the hairdresser he shows it to everyone in the salon - whether or not they want to see it.
I can understand why you feel as you do, my hair falling out drove me mad, it might not seem important to other people but I found it very upsetting.
Why have you decided to have your thyroid removed? One of the first things my Endocrinologist said to me was to have my thyroid removed or RAI. I am glad I ignored his advice because I still have my thyroid 10 years later. I have seen how others have struggled to get the correct treatment afterwards but I do know some have no choice.
Have a look at Elaine Moore's site she had RAI and then started a support site for other sufferers.
I’ve been advised by a couple of specialists that the best treatment for me is removal - I have thyroid eye disease so RAI isn’t really an option for me, risks are too high and I really don’t want any additional risks of my TED getting worse x
If I was you I would join Elaine's site and ask her advice because she has helped me and a lot of other Graves' sufferers. You can read my story on my profile page if you are interested. x
Just to add will your Endocrinologist be prescribing you T3 as well as T4? A lot of people without a thyroid need both or NDT.
I am the same as Fruitandnutcase. I have had Graves for over 12 years and have had several bouts with hair loss. I took PTU the first couple times because I was allergic to carbimazole (well, methimozole, I am in the US) and almost every time after about a year in to treatment, my hair starts to fall out. I always thought it was the medication. This go around I asked if I could switch over to methimozole (on small doses with antihistamine so I my body got used to it) which they let me do and once again, a year in to it, my hair started falling out. I have decided it's because of the whole up and down thing like Fruitandnutcase said. I was quite hyper for a while and then went quite hypo and that's when my hair started falling out like crazy. I'm getting back in the normal range now and my hair fall is starting to slow down. I've honestly lost count as to how many times this has happened to me, I think this is the 4th hair loss episode. This time it didn't even really freak me out, I have some really good hair vitamins I have found that have made my hair start growing really fast and I know that hair is growing back in because I have a bunch of layers all over that I didn't have before.
I have refused to get RAI or my thyroid taken out, personally for me it will be an absolutely last resort. Every appointment my endo asks me about it and every time I say no and every time she rolls her eyes at me. But she has said she will let me stay on methimozole long term as long as I have no liver problems.
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Painful hair/scalp
hair lose
Losing hair quickly
Lots of health issues - can anyone help?
Help with hair problem
