Graves disease

[PeppyPo]

Just been told yesterday that a have graves am really stress over my hair it is shredding loads i looked on i internet seen picture soo scared anyone experience it will it fall out will it ever stop shredding ??

[shaws Administrator]

Welcome to our forum PeppyPo and thanks for putting your medical history into your Profile.

I don't have Graves but members who do will respond when they read your post. I am also sorry you have other medical issues and are a young mother with other unpleasant conditions.

We've found that if we are diagnosed with one autoimmune condition that we can develop more. I have three at present. Thankfully, with advice/support of the forum and Thyroiduk I have been well for some time.

This is a link which might be helpful in the meantime:-

thyroiduk.org.uk/tuk/about_...

[PeppyPo in reply to shaws]

Thank you for taking time to comment .

[Fruitandnutcase]

I’m sure it will stop. Mine was terrible, it fell out all over the place. The fallout was worse because during my treatment my TSH was allowed to go from <0.03 below limit to 7.00 which was a huge jump. My endo said my body was in a rollercoaster which I had to agree with. She said that once I stabilised I would be fine and I was.

In between I tried all sorts of shampoos - there used to be and maybe still is a Meadowsweet shampoo and conditioner produced by a company on the Isle of Skye that was really good, then I moved on to one of the Kerastase shampoo and conditioners - again I can’t remember which one but if you ask in a good hairdresser’s who sells Kerastase you should be able to find out.

My hair was always long - mid back and even when it fell out it still stayed long. The nurse used to drive me wild by saying ‘oh you’ve got lovely thick hair’ when I knew from washing it that it had gone from being a thick chunky pony tail thickness to being like a pencil thickness. I used to take photos if the fall out in the bath after I washed it, then I started to collect it in coin bags you get from the bank. It was the one thing that really got to me when I was being treated.

My fingernails also disintegrated - that was really painful. I could hardly use my hands my fingers were so sore. I used an OPI Nail Envy for flaking nails, again ask the store assistant what the recommend, along with massaging in almond oil or bio oil and eventually that sorted itself out too.

My hair has thickened up again, it is still long too although I have cut it to collar length which keeps it looking better.

I also made sure to include lots of fish - minus the chips mostly, nuts and seeds and other things that are good for you in my diet. Totally cut out junk food and fizzy drinks. I home tested so that I knew my vitamin D and B12, plus folate and ferritin were all well up within their ranges and my pharmacist came out when I got my first prescription for carbimazole and told me to take a high strength vitamin C so I always took 1000 mcg slow release vitamin C with zinc while I was taking carb.

I was treated with block and replace - constant 40 mcg carb and ever increasing amounts of levothyroxine until I reached 100mcg then I stopped both when my bloods reached a stage my endo was happy with.

Read as much as you can about Graves, I used to keep a bullet point list of how I was feeling etc - helped when the endo asked how I was otherwise I’d have said ‘fine’ when I wasn’t.

Good luck with the hair, I know exactly how you feel about that!

[PeppyPo in reply to Fruitandnutcase]

Thank you so much for your comment and advice.

[pennyannie]

Hello PeppyPo

I too have Graves Disease, diagnosed 2003, and had RAI thyroid ablation in 2005 and therein after, ( Graves, to a much lesser degree ) thyroid eye disease and hypothyroidism.

My symptoms were insomnia, dry gritty eyes and exhaustion, so very different from you, but then I was 58 and very many years your elder.

Graves is an autoimmune disease where your immune system attacks your thyroid.

It can be triggered by a sudden shock to the system like a car accident or maybe an unexpected death and I read everybody's journey is unique to them, though there will be some similarities.

Your body is running very fast and it's important that your core strength is maintained, during this difficult and challenging time, and optimal ferritin, folate, B12 and vitamin D will help you.

No doubt you will soon be on some anti thyroid medication and your levels will drop back down and you will feel more comfortable. I was diagnosed within a day, and put on Carbimazole and then within a month picked up by the hospital.

Anxiety and stress drive Graves - so please try and relax and stay calm, I know this is much easier said than done.

There is an excellent website run by a lady who has the disease. It is Stateside so medical protocol slightly different but there are various sections, regarding holistic and alternative therapies as well as, obviously the conventional treatments. It is very informative and there is an open forum much like this excellent site where you can post and read other peoples questions and answers, and learn along the way, to equip you better to understand everything Graves Disease.

[PeppyPo in reply to pennyannie]

Hya thanks for commenting i have had it confirmed today that it is greavs.. been i was so upset because I thought it would effact me trying for a baby

[pennyannie in reply to PeppyPo]

Hey there PeppyPo,

There is no need to worry about your future plans, just now, try and take one day at a time.

I've just reread my previous post above and realise I never told you the name of the lady who runs the website and who has this autoimmune disease !!!

Silly me -

Anyway, it might help you to take a look at the Elaine Moore Graves Foundation in the States. Medical protocol might be slightly different but there are various topics covered, unique to Graves and there is also an open forum much like this amazing site where you can ask questions, and learn from fellow Graves patients.

Please ensure you keep your core strength strong, and your ferritin, folate B12 and vitamin D all need to be optimal and just not anywhere in the range, for any thyroid hormone, your own or that supplemented, to work.

[PeppyPo in reply to pennyannie]

Thank you o have start vitamins iron b12 they have gave propylthiouracil i have read that it can worsen hair loss 😔

[jaxie28]

I too have Graves Disease and had my thyroid removed last year and am doing okay at the moment on NDT and vits. I suggest you take Biotin for hair loss and iron tablets daily.

Please don’t stress as this worsens symptoms

[PeppyPo in reply to jaxie28]

Thank you very much for replying

[Lora7again]

I have had two episodes of hair shredding and they have lasted years ... luckily I had a thick head of hair to start with. During the last episode I visited Lucinda Ellery who put some extensions in my hair to help it look thicker. Lucinda's is very expensive so if you can't afford them look at getting some glue in extensions at a local hairdressers. My hair has now stopped falling out and I am in remission again. Read my profile it tells of my struggle with this horrible disease.

[PeppyPo]

3 weeks into my diagnosis now i hate it i feel like no one has told me anything GP told me i have this disease take these pills find everything out from the internet and forums feel like a drifting into depressing my anxiety is taking over my life dont no much about this disease but a hate it

[pennyannie]

I know and understand exactly how you are feeling, as will most Graves Disease patients.

I had to learn of my situation back to front, but you are at the beginning of your Graves journey so can be better prepared.

It's a poorly understood and badly treated autoimmune disease, as everybody's symptoms can be different, and there doesn't appear to be a definitive set course, that the medical profession can follow and medicate to and learn from.

If you check out the Elaine Moore website, there are sections on relaxation, life/work balance, reflexology, holistic and alternative options that might just help you during this period. It's also very important to keep your core strength strong and stable to support you through, this difficult adjustment, as detailed previously.

Find something you enjoy, and do it. Find some " you " time, and do whatever it takes to feel relaxed and allow yourself to be you. Try not to beat yourself up or get angry as you may feel as though you have " lost control, and your way " and can't see the road before you.

It is a bit of a vicious circle, as the more you worry the more this will exacerbate your symptoms. Your mind is in overdrive " what iffing " everything and you need to try and turn off that brain by finding a divergence.