When I had Graves back in 2012 I was treated with block and replace and was prescribed 20 mcg carbimazole for four weeks then tested again and as not enough had happened I was contacted by my endo who I was not due to see for another two months and told to increase my daily dose to 40mcg.
By the time I got to my first endo appointment I was very hypo. I was told to lay of the carb for ‘ a few days’ I started levothyroxine and stopped the carb for four days.
By the time I got to my second visit my hair was falling out like mad. It drove me round the bend. My fingernails were also a disaster and very painful. When I saw the endo on my second visit she said my hair was falling out because my body had been on a roller coaster journey having gone from being very hyper to being very hypo!
I used meadowsweet shampoo for a long time - unfortunately the company are no longer in existence but I also used a Kerastase shampoo designed for scalp health that was very good. Eventually my hair stopped falling out but I found it really upsetting. I used an OPI nail product on my nails too and that was a huge help. I also always took a high strength slow release vitamin C capsule and made sure my vitamins D3 and B12 plus ferritin and folates were well up in their ranges.
Have you read the Patient Information Leaflet that came with your carbimazole?
That tells you what side effects to look out for, you could also speak to a pharmacist they might be able to help. I know a few weeks after I started carb I developed a bit of a sore throat and saw my GP asap for blood tests but my bloods were fine so I stuck with the carb for the year my treatment lasted.
what were your results BEFORE starting Carbimazole
Have you had Trab or TSI antibodies tested to confirm definitely Graves’ disease
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once for autoimmune HYPOthyroid….also called Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms. We see small, but steady stream of hashimoto’s patients initially misdiagnosed as having Graves’ disease (hyperthyroid) if all thyroid antibodies not test
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease - Hashimoto’s or Graves.
Low iron/ferritin frequently causes hair loss. Low ferritin especially common with hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Vit D was 60 (just in normal zone but towards low end)
B12 was 102 (ok)
Folate was 6.2 (ok)
This was 3 weeks ago and they put be on Carbimazole 1 week ago, blood test end of July for Thyroid function and TSH Receptor ABS
Been given no advice, had no one to talk to about symptoms, why this is happening, what is happening etc
Already on surgical removal of goitre list but that was pre this result and they only wanted to remove the right side with 4cm growth and leave the 3cm growth the other side, Endocrinology have written to ENT to ask if they will remove it all now, but that letter won't get to ENT until Wednesday.
Have you tried Aveeno shampoo for your scalp itching and hair loss. It was suggested to me on here when I first started taking Carbimazole. I used the volumizing one for fine hair with fresh greens and my scalp felt better very quickly, also the conditioner. It's not the cheapest shampoo available but is often on offer in Boots.
Hi, I started on carbimazole in 2019 and the same happened to me. I can’t remember how long it went on for but I also started to lose hair. However after my thyroid levels got back in range, this stopped. I stayed on carbimazole for 18 months and have been on and off it since with no hair loss. So in my case I think the hair loss was just down to changing hormone levels.
My hair loss was never visible, other than to me seeing lots coming out when I washed it.
Definitely get your iron levels checked because low iron causes hair loss. One other thing I also did was research hair extensions. There are hairdressers that do small extensions for people with medical conditions. Just knowing there were options if the worst happened made me feel much better. Lol Mary Berry uses them and her hair looks great!
I got a doctors appointment today and they told me to throw everything at it, Vit D tablets (double dose), Multi Vit with Iron, Collagen Powders, Tumeric Capsules and try and stick to gluten free diet. I have repeat blood tests end of the month. Fingers crossed all this helps!
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