Losing hair, and another person’s results on my... - Thyroid UK

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Losing hair, and another person’s results on my record - hyperthyroid

SamB22 profile image

Hi again

Just after some advice.

First of all I was put on proponalol 40mg 3 times a day alongside carb 10mg. Was previously on 20mg carb and Bisoprolol for 6 weeks. After 5 weeks of taking the proponalol my hair has started to come out. Had a phone app with consultant who reduced my carb to 5 mg and by the time of the appointment I had been off proponalol for 1 week.

Consultant said at our next appointment they would discuss other options instead of carb which i assume are the 2 ones that worry me- I can’t even write them. He said it could be the carb or overactive thyroid catching up. He is very keen to jump to those treatments. I have read on other forums if people on proponalol and their hair coming out. I don’t want the other treatments but I don’t want to lose my hair either- my head is hurting with all the stress.

I’m at a loss and just hope it stops falling out by the time of my appointment. Anyone else had this? I just would like to stay on carb. Even though I have had a very hard time on it - now on 5mg I hope to settle a bit more. But if my hair doesn’t stop coming out I don’t know what to do. Hoping now on lower dose and no proponalol it may stop falling out- anyone had similar?

During the consultation he gave me results that were not mine from couple of days previously which I had not had bloods taken. It sounded like he didn’t believe me. Anyway I have followed up by involving PALS and have a printout from the docs. This doesn’t give me much confidence !!! Plus on my letter from the consultant had a medication I dont take anymore the Bisoprolol alongside proponalol and received a phone call from the pharmacist querying this.Consultants secretary said I should be taking it - I said it wasn’t discussed at appointment with consultant and when I did speak to the consultant he said it shouldn’t be on the letter!!! This has made me so anxious a lack confidence in the endo team - on top of this his secretary is rude and twice I have received no correspondence about appointments and have to keep phoning!

Sorry for long text

Any advice would be appreciated.

Sam

30 Replies

Hi

I have underactive thyroid but have been suffering unexplained dizziness for nearly 3 months, as usual doctors assume its anxiety or depression once they've ruled out the usual suspects, ie Menieres disease, Labrynthitis. So I was prescribed Propranol, even though I wasn't anxious before, my dizziness just started one day out of the blue.

I'd heard hyperactive members being prescribed it so was concerned about the impact on my thyroid. Plus I have asthma which is a no no for Propranolol. I always read about potential side effects of new medication as I have a history of drug anaphylaxis. I saw hair loss as a potential side effect and that made me more determined not to take it.

The good news is as with most drug related hair loss it's temporary and your hair loss should stop now you've stopped taking it. It might take some weeks to settle down. Also being hyperactive can lead to hair thinning. I've no experience of being on Carb, but we do have very knowledgeable hyper members who will be able to advise you.

hello there, I have graves disease and have taken carbimazole continuously since 2018.My dose was 40mg per day.I also take proprananol at 20mg 3x per day as a migraine prevention and to slow my heartrate.I have experienced hair loss in various degrees over this time but mostly when I was undermedicated and my T4 was too low.I haven't really attributed it to my medication.I have just had a total thyroidectomy 3 weeks ago so have now stopped the carbimazole.I still take the proprananol.I have noticed since I had my operation that my hair fall has reduced by at least a half when I wash my hair.Obviously it is difficult what to attribute it to.I will say that I do not have any regrets about my operation at the moment.I feel fantastic.Up at 5.30 this morning woken by our little dog.Feel bright eyed and bushy tailed compared to how I have felt every day for the past 4+ years.I have kept my profile updated if you care to take a look for a positive thyroidectomy story.I realise I am at the start of my journey but I too was terrifed due to the many horror stories told.I put it off for a bit longer than perhaps I should.Of course everyone's experience is unique so it is important to look at both sides to get a balanced view.Hope this helps.

Hi,

If you don't mind sharing your story, what leads to you having total thyroidectomy?

hello there, I don't mind sharing at all.Basically I had had enough.I felt I had given both treatment options( titration and block and replace ) a good go.My thyroid eye disease had flared up again and it just seemed impossible to get my thyroid levels stable.I have suffered migraines all my life and unfortunately they had come back with avengance.I couldn't stand the thought that it would be like that for the forseeable future.I asked myself to be referred to ENT.I thought basically it couldn't be any worse for me.I am glad I tried everything else first and I have learnt so much about my condition from the forum.There is a niggling doubt that I maybe struggled on a bit too long.I feel like a new person now.However we have had covid to contend with so I very much doubt I could have had my operation much earlier.My profile has been kept up to date along the way, so if you care to read in more detail you can click on the picture at the side of my name.Hope this helps.

I had a total thyroidectomy in 2018 and, like you I felt it was the best decision I had made at the time. I also have very agreesive thyroid eye disease that had to be treated with radiotherapy and steroid infusions twice a week for 22 weeks. I can te you right now that I wish I had waited and if I have to do it again I would not have the surgery. My life has been turn completely upside down. I have developed several other conditions all linked to being undermedicated and the lack if support when you are discharged from the hospital. GPs do not have a clue and how to treat thyroid conditions. I am currently paying a private endocrinologist as I got so fed up being told it is stress or that my levels were good when I could not even get out of bed. I have so many symptoms now that I can't list. I wish you the best and hole your situation is better than mine.

I am sorry you have had continuing problems.I realise that everyone has their own unique experience.I too hope I have made the right decision. But at the moment I feel positive, and realise the more knowlege I have about my medical conditions the better chance I have of continuing to feel well.That is one if the main reasons I have decided to keep looking on the forum to be prepared for any problems.Everyone's experience on here is valuable and may be heplful to someone else.Best wishes to you.

Definitely, my sister had the same surgery a 2 years before Mr and my dad had his 11 years ago. They both feel it is the best decision. All the best.

Thank you

Hi.

I am not sure if this it going to help.

I was prescribed propanolol but then stopped by another doctor I consulted with. But I have been prescribed Carb for quite sometime, before that I was prescribed thyrozol. The doctor switched me from thyrozol to Carb due to the possibility of me having side effects such that of hairloss and skin sensitivity, eczema.

I still experienced hairloss, but when I was in remission my hair kind of growing more, coming out much less/normal amount, but still much less thicker than I used to have. From what I have read, one of Carb side effect is also hairloss, but I experienced less compared to when I was on Thyrozol.

How bad is it ? the hairloss?

SamB22 profile image
SamB22 in reply to ABCD210506

Hi a lot more than usual is coming out where I am shocked. So worried in case it doesn’t stop - I don’t want losing my hair to be the reason I have to have a definitive treatment. He has lowered carb to 5 mg and no more proponalol (he didn’t think it was the proponalol). Just hope this will stop/reduce the hair loss.

Also I had dry gritty eyes on proponalol - consultant says suggestive of TED. I have woke up with eyelids under eye brow swollen but this goes down during the day - but don’t know if this is cos I cry a lot- not as much dry or heavy lids now.

Question: with TED do eye lids remain swollen throughout the day or go down?

Sorry this is under your reply but hoping others read this to and may have some advice - thank you

hello, I have TED and the main area which is swollen for me is under the eyebrows.It is quite puffy and is like that all the time.It is sometimes recommended to sleep with the head slightly raised to help with the puffiness so there may be cases which worsen over night.My eyes can be very dry and gritty upon wakening, and also are quite bloodshot.I use an ointment at night and a gel in the day.I take proprananol and find that can cause me to have a dry mouth and also the lining of my nose.I also take amitriptyline as a migraine preventative and that also causes dry mouth and nose.I try to drink alot, and use prescribed gel for my eyes.I've even used a cotton bud to apply some of my eye gel to the inside of my nose if it's really dry and uncomfortable.Hope this helps.

I have read somewhere that amytriptyline can interact with Carb. I also have chronic migraine that seems to be getting worse over time.

GP mentioned about giving me amytriptyline but not sure yet. What's your experience using it ?and How do you take it (like few hours after or)?

hello there, I started taking amitriptyline long before I started with all this graves business.I have had migraine with aura since I was a teenager( long ago in the 1970's) I have taken various things over the years.Mainly once an attack started.It has sort of ebbed and flowed due to hormones, pregnancy, menopause etc.The last serious thing I took was a triptan I squirted up my nose.I vomit continually so tablets are no good.I had to stop those as the gave me excruciating rebound headaches.My son was diagnosed with a serious illness in 2014 and the stress brough them back badly.I needed to be well to look after him but was getting repeated migraines.I went to GP and he suggested a preventative would be best.Something to take every day to break the cycle.I started on 10mg amitriptyline every night before bed.It helps sleep and I soon noticed a good difference.Less frequent migraines and also if I did get one I could function.I continued on this for a couple of years but then I started waking up with bad neck and headache at the back of my head.I increased dose to 20mg per night as the doctor said I couldThis has been working fine, less frequent and tolerable migraines.However last year I started getting 1 migraine a week again.Lasting 2 days with vomiting for 24 hours.It turns out I was slightly over medicated and my heartrate was running fast.I contacted GP and he said he didn't want to increase my amitriptyline dose as it appeared to have stopped being effective so he prescribed proprananol 20mg 3x a day as a migraine preventative.This has helped me so much and reduced my fast heartrate and some of the jitters I used to get.I can't remember my last one.He didn't say to stop the amitriptyline so I take both.I had a thyroidectomy 3 weeks ago and feel so calm so I hope it's the end of them.That is mainly what decided me to go for a thyroidectomy, the migraines, I couldn't carry on like that.No-one ever mentioned that it might interact with carbimazole or cause problems with thyroid meds.The only thing is that some people say is it can be difficult to stop and they get bad withdrawal symptoms but I am of the mind " if you need a medicine for a good quality of life you need it , full stop" I'm happy to continue it as long as it is helping me.I have not experienced sluggishness on waking or anything like that, just quality deep sleep.Hope this helps(sorry for the ramble, I got there in the end).

ABCD210506 profile image
ABCD210506 in reply to SamB22

No problem!

I don't think I have TED but I do experience dry/uncomfortable eyes sometimes but nothing more than that. I just use eye drops most of the time.

I have swollen eyelid (one side only) for one or two times ,not sure if this is related to my thyroid, but I just give eye drops and drink antihistamine. They go down after a few days.

SamB22 profile image
SamB22 in reply to ABCD210506

That’s sounds similar to me. Is TED dry and gritty eyes though? I dont fully understand it x

ABCD210506 profile image
ABCD210506 in reply to SamB22

I have no idea to be honest, I am planning to ask about this to a doctor.

My eyes feels very sensitive nowadays, like light sensitive, and generally uncomfortable. Do your eyes feels fine?

SamB22 profile image
SamB22 in reply to ABCD210506

Yeh mainly - not as dry now not on proponalol. On waking a little swollen under eyebrow but this goes down during the day. But I have done a lot of crying over the last few months so don’t know if it’s something to do with that. Also been swimming a lot which I’m giving my eyes a break from the chlorine. Going to ask consultant to refer me for checks/ screen to make sure it’s not it. Let me know how you get on x

Hey there again Sam :

i think you should talk with your doctor and seek a second opinion and take someone else with you for support and two heads are generally better than one at remembering content as it's inevitable that questions arise on the way home.

Explain how confusing your first appointment was with the registrar and consultant disagreeing in front of you, on your treatment and now with this last episode of your having some other patients results on your medical record.

It's not acceptable and a different hospital may offer a treatment plan you feel better able to work to and your trust restored.

SamB22 profile image
SamB22 in reply to pennyannie

Hello, spoke to doc last week she just referred me to PAL. Not really interested. Had a phone call back from medical practice who I reported it to also and she has phoned the path lab to get them removed. Will update me when done. Also waiting for a call back from PALS tomorrow x my confidence in the consultant is low and he rushes when talking to me. I feel scared seeing him due to the trust issue and how he is - I’m def just a number and not seen as a person who feels vulnerable x

pennyannie profile image
pennyannie in reply to SamB22

I understand and all this is will be causing you more upset, stress and anxiety which are likely triggers for this poorly understood AI disease.

If trust has gone, which is evident how can you go forward with this team ?

Please speak with your doctor as you need to be referred elsewhere - you might end up with the same answers but staying under this cloud of mistrust and upset is causing you more undue, extra stress, the very thing we need to try and reduce.

Take someone with you - being told to contact A, B or C - is passing the buck and you are not well enough to be handling all this bureaucracy and pass the parcel tactics.

SlowDragon profile image
SlowDragonAdministrator

Request vitamin D, folate, B12 and ferritin levels are tested

Low ferritin levels often linked to hairloss

I had Graves’ disease in 2012 and was extremely hyper. My GP prescribed carbimazole, booked me in to see a consultant and told me to go back in 4 weeks for another blood test - I started on the 20mg carbimazole a day and after the four week blood test I got a letter from my consultant telling me to increase my carbimazole to 40 mg a day which I did.

My appointment was three months from when I started taking the carb. I saw one of my consultants ‘side kicks’ for my first appointment. He told me to start levothyroxine straight away but to stop the carb ‘for a few days’ - how long is a piece of string I ask? Anyway I stopped for five days. Then carried on with both 40mg carb and thyroxine. - I started on 50mg and increased over the year I was being treated. I have asthma so I couldn’t take beta blockers of any sort.

By the time I got to see the consultant a couple of months later my hair was falling out all over the place. When I told her she said it was because I’d gone from being massively hyper to being very under active with the carbimazole and that my body was ‘on a roller coaster’ and that things would settle down.

Things did settle down and my hair stopped falling out. I have to say I found my hair falling out in handfuls to be one of the most upsetting things of the whole business. I also went totally silver right round my hairline back and front. I read somewhere that that can happen too. As it is that didn’t change once the hair settles and it looks really good.

I can see why you aren’t impressed with your hospital’s record keeping.

My hospital is reckoned to be one of the UK’s top hospitals and yet (to me) their records leave a lot to be desired - I always ask for a copy of everything ‘for my records’. The most recent of their record keeping errors being the (temporary) rheumatologist writing to my GP saying she had had a telephone consultation with me and that I had given certain permissions - in fact we had had a face to face consultation and I hadn’t given any permissions! There were other major problems which I won’t bother to mention. I have a friend at the other side of the country who has just had a letter from her hospital following a DEXA scan which stated that she hadn’t had her third bisphosphonates infusion - when she contacted them and said she had and gave them the date it tuned out they had given her someone else’s results!

So, records apart - could it be that your body has lurched from hyper to hypo and that is causing your hair loss? Bearing in mind that I had a massive loss of hair and hadn’t taken propranolol.

Thanks you for your info. Getting bloods took tomorrow so unsure about being under previous ones were in range apart from TSH 8 weeks ago. Anitibodies normal. Consultant away for 2 weeks and should be getting an appointment a week after. So it’s quite a wait as far as I’m concerned to find out my results. Plus still waiting for the actual appointment he said from the secretary!

SamB22 profile image
SamB22 in reply to SamB22

Also hope mine settles down- just washed it and a lot more than usual coming out - it’s heartbreaking

I got so fed up with my doctors because I never ever had T3 tested - or vitamin D or B12, antibodies were tested because they were testing for Graves disease - I had lost masses of weight amongst other things.In the end because they were saying that if I didn’t stay in remission then it was radio active iodine for me and I was not impressed that they would even consider that when I hadn’t had everything tested that I I ordered a Medichecks home finger prick test that did everything - all bloods, antibodies, vitamins etc.

I used to try not to wash my hair any more than I had to because I found it so upsetting to watch it all heading for the plughole - I used to wash it over the bath.

I also got so fed up with medical people telling me I had a lovely head of hair etc. when I knew that before Graves I had a big thick pony tail when I washed it and by that time it was about as thick as a pencil so although it was long I knew how sparse it was compared to what it had been.

Eventually got a load of little plastic bags and kept each ‘fall out’ intending to take them with me next consultation. I also took photos of it - it really got to me! I found it the most stressful part of the whole thyroid problem.

Someone on here told me about Isle of Skye Meadowsweet shampoo which I used for a long time but I see the company are no longer in business, I also used a Kerastase shampoo and conditioner that was designed to help with hair / scalp problems.

Hopefully yours will stop falling out and things will go back to normal when you get your thyroid levels back to a good place for you.

You need to run away from this Endo and find another.

Hello SamB22, could you update us with what happened about the raised liver enzymes since the last appointment ?

Did they do the ultrasound of your liver ? (and the other blood test for ?bone something )

Did your liver enzymes come down again, so they decided to continue with carbimazole ?

I notice your carbimazole was continued, but was reduced to 10mcg , and now 5mcg . . (presumably this was reduced because TSH had gone up to 8 .... (did you find out exactly what the fT4 and fT3 results were on that test ? )

" unsure about being under, previous ones were in range apart from TSH 8 weeks ago. Anitibodies normal"

it say's 'in range' but they could have been quite 'low in range' (your TSH going up to 8 would indicate that they had been fairly low) ...... So this does look like your thyroid hormone levels have gone from quite high to quite low .. and i think it is quite possible that this change in levels is related to your hair loss.... i think big swings in thyroid hormone level can sometimes lead to hair loss that will sort itself out naturally once thyroid hormone levels have been stable again for a while.

So hopefully once things are stable your hair loss will sort itself out... but don't forget how long the hair growth cycle is ... these effects do take a long time to show in what happens at the hair.

They have continued to prescribe carbimazole, so that suggests to me that they are not going to take you off if for 'liver' reasons (i think they would have stopped it urgently weeks ago if they thought it was causing a liver reaction)

Your (TRab ?) antibodies are normal again ...... this is a very hopeful sign . (and they weren't very high in the first place. which is also good )

You do need to be mentally prepared for the fact that every consultant you ever see will be raising the issue of 'definitive treatment.. (RAI / thyroidectomy) ... it's just par for the course ....and it will always feel pressurised and presented like it is 'the only option' .... it will probably be brought up at every appointment .... you need to treat this pressure like 'water off a ducks back' .. treat it just like a cold caller offering you double glazing :

~ you know they have to try to sell it , it's their job (they need to get consultant lists down)

~ but you don't have to buy it ....... (unless it 's what YOU want.)

obviously there are going to be some circumstances for some people where definitive treatment must be considered , eg if antithyroid drugs really can't be continued because there is a dangerous reaction to them , and both Carbimazole and PTU have proved to be unsuitable .... then ok ,if that happened and your fT4 / fT3 levels were still high and causing problems, then you would have to face the issue of definitive treatment.

But do try not to let it get to you every time it is mentioned... it will be mentioned a lot.

Just take your time .. make sure you get all the relevant facts and test results . (then check they are yours not somebody else's ! ) and then take time to check everything twice before you get panicked .... as you have already discovered there is a lot of potential for mistakes / misunderstandings /differences of opinion.

So even if endo says , or writes something that worries you , try to keep calm until you have found out what your results are , what they mean, and what all your options are.

SamB22 profile image
SamB22 in reply to tattybogle

Hi

My levels came down and ultrasound fine thankfully and stayed on carb. Sorry my TSH wasn’t 8 - it was 8 weeks ago. Yeh TRAB results normal now. Thank you for the advice about them mentioning other options all the time I will think of it the way you said 😀 at least try x

tattybogle profile image
tattybogle in reply to SamB22

oh yes ..silly me . can see it says 8 weeks now . no idea how my brain turned that into TSH 8 :)

I have had several bouts of hair loss in my graves journey. I took PTU for a long time because methimazole (the US version of carbimazole) gave me hives. I originally thought PTU made my hair fall out which it sometimes can, but mine was happening two years in to taking it. I had pretty stable levels when I stopped taking it but eventually went back to being hyper. The doctors here are similar to your doctors in that they try and push RAI or removing the thyroid instead of long term ATMs. I never had a hard time getting my levels under control and I didn't have horrible symptoms so I have always felt like those two options were a bit drastic. Went on PTU again and after a while my hair fell out again. Stopped using PTU and switched over to methimazole about 4 years ago. I started on a very low dose and let my body get used to it and have been on it ever since. I notice more hair loss when my T3 gets low. Doesn't have to be off the charts low and in fact are usually just "normal" low when it happens. Since my time on methimazole I've had 2 or 3 hair loss episodes and it always improves when I reduce my dose.

Right now my doctor thinks I am on 5mg a day but she also thinks being on the hypo end of the scale is perfectly acceptable so I tend to self medicate and get private blood tests. So now I'm on 2,5 every other day and things are improving, including my hair loss. And now when I recognize it and reduce my dose, the hair fall out stops fairly quickly. I have had a very skinny ponytail for quite some time but the other day I was actually surprised at how much thicker it is! So it can come back for sure 😊😊

We are all different but if you can figure out your trigger, it makes it a whole lot easier!

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