Hair loss

[Lisa31SW]

Has anyone else who either has hyperthyroidism or is on Carbimazole have excessive hair loss? I also suffer from low ferritin and have suffered with low Vitamin D before although last blood test results were that my Vitamin d level is back to normal and still suffering from lots of hair loss.

[Millea]

Hello - I was diagnosed with Graves in 2016 and the hair loss was really bad at that time. Once on carbimozole and hormone levels stabilised somewhat - my hair loss declined and hair thickened again. However, after 'good' blood test in March this year, my endo said I must reduce carbimozole dose gradually down to 5mg a day and since doing this - my hair is falling out again at alarming rate. Had very frustrating meeting with endo this week - who again told me my blood test was 'all fine' - he dismissed my hair loss and all the other symptoms (swollen eye sockets, increased size of goitre, shakiness/jitters, brain fog, painful knees/hips and insomnia) - he literally ignored all this and just kept saying my bloods are fine. I asked if he had tested T3 and he said no just TSH and when I asked if it were possible that I was not converting T4 to T3 and without a test for T3 he wouldn't know this - he almost laughed at he and said there was no point in testing for T3. In addition to this he concluded our meeting by offering me a thyroidectomy and has referred me to a cardiologist! For my intermittent rapid heartbeat! I was stunned! But in answer to your original question - yes, hair loss is a symptom of Graves/hyperthyroidism and should regrow once you are on the right dose of carbimozole and hormones are back to optimum levels. I also found taking B complex, gentle iron, selenium and B12 helped a lot. All the best.

[Lisa31SW in reply to Millea]

Thanks Millea that’s helpful and funnily enough your symptoms sound exactly like mine Lisa

[Millea in reply to Lisa31SW]

Hi lisa31SW

Do you also have TED? Last year I was referred to Moorfields Eye Hospital where they gave me steroid infusions once a week for 3 months and the radiotherapy to eye tissue for 10 days and it really helped. My TED almost completely corrected and swelling was much reduced. Sadly, recent reduction to carbimozole has retriggered the TED but if it hadn't been for that it would have been a great result. I wonder if you have been offered anything like that or if your eyes are not too bad? I hope you are able to optimise your hormones and you soon see a decrease in hair loss. All the best.

[Rmichelle in reply to Millea]

Yesvi wish you the best aswell but no my eyes seem ok at the moment, (touch wood) but yes im holding back on my usual meds until results.xxtake care😊

[Rmichelle]

Hello yes im on carbi aswell 20mgs and now increased to 40 by endo, milea is so right! I have hashimotos and also waiting for test results for graves but yes my hair has thinned out alot and met another lady at the endo clinic on tuesday as we were talking about the same thing, its soul destroying- my ferritin levels are very low range and taking solgars gentle iron but only 2mgs to build it up very slowly as doc refused injections. Docs dont give a flying ..... what you are going through they are just intetested in numbers and guidelines.xxx im saving for a lovely wig but it costs £500!!!natural hair.

[Millea in reply to Rmichelle]

Hi Rmichelle

So sorry to hear you are suffering hair loss too. You are absolutely right when you say that endos just look at the numbers. To be quite honest when I left the appointment with mine on Tuesday I felt 'what was the point'? I could have stayed at home and he could have sent me a letter just saying "your fine, but do you want me to whip out your thyroid? " He paid zero attention to my symptoms which have severely increased since he told me to reduce my carbimozole from 20mg a day to 5mg every other. I have now decided to increase again myself slowly back up to 20mg where I was doing much better before March. However, this will be an issue as I probably won't be able to get a prescription for this and can't afford it. I have also had to pay for a private full Thyroid blood panel to be done which includes T3 and Vitamin levels. Not easy when you are unemployed (can't work as too ill - but not classed as disabled so receive no benefits) and a single mum of three! I need to get well or at least back to a state where I can work so I can start to live again and support my family. I feel endos just dismiss the patient and tick the boxes. It's a waste of time seeing them.

[Rmichelle in reply to Millea]

You are right i had my 1st appountment on tuesday too, and he did not inspire confidence he just dismissed the hashis and said to increase carbi and wait fir your results of bloid tests until you start levo for block and replace. I think when im more confident i think at some point i will be self medicating. Its dire isnt it thyroid us very poorly managed by medics, i had all my thyroid tests done by doctors apart from tsi fir graves endo done that, its bad that you have paid, i would love to go private with a endo but cant afford ut and im working but off sick at moment.

[Millea in reply to Rmichelle]

Do you know if the blood test results you are waiting on include FT3 and T3. I hope so as this will give you a fuller picture. Mine won't even test these as he dismisses them saying they're not relevant - which is why I had to go for private test. Like you I wish I could go to private endo - but even people who can afford it can run into problems. I have seen several posts on here where s private endo has prescribed medication etc and the patients GP has refused to add it to their prescription list as it's too extensive! You can't win!!!!

[Rmichelle in reply to Millea]

I remember looking at the paperwork for my bloids and seeing graves and a thyroid panel testing and full blood count. So i hope so as ive had t3 done previously. Had you been tested for hashis aswell? Just been advised by another person i should sack my endo as it hasnt a clue about my meds and with hashis you are really hypobbut will have swings to hyper so being on carbi wont help, its such a problem. Oh i do wish i could win the bloody lottery!! I know dics hate it when you go private.xx

[Rmichelle]

Sorry meant to say 20mgs not 2mgs!!!

[purple64]

My hair is awful at the moment I have spent a lot on all sorts of shampoo but it doesn't seem to make any difference. I was diagnosed in April this year and it was ok until about June / July time and then it just fell out. Constantly picking up loose hair off clothes etc. I really don't know what the answer is 😏😒

[Samy3 in reply to purple64]

Hi purple 64 I was diagnosed last year in may with graves disease my tsh was completely suppressed and my ft4 was 54 had lots of symptoms including ted lots of hair fall when I was on carbimazole all my symptoms went away did nt have a single hair fall but endo and GP stopped my carbimazole after 8 weeks saying my blood results are normal even I was keep complaining abt the symptoms but endo discharged me saying that my symptoms are not related to thyroid anymore what rubbish recently I been diagnosed with stomach gastritis and it all started after having graves disease never had these issues before now last week my GP said that I should go to a private endo bcs he can't do anything I cried a lot bcs its difficult to afford and see an endo privately pls all of u for hair loss check ur ferritin level mine was only 15 few months back range is between 13 to 300 GP still did not give anything I started taking ferrous sulphate 200mg one day with vitamin c myself and has made a lot difference ....don't wanna say but these medical specialist don't know anything I got a lot help from this forum and another forum I have joined hope we all get better soon I'm still waiting to get treated properly but not getting any help from doctors... Samy