Ive been on letrozole for 2+ years. Ive been to several doctors (including vestibular neurologist)and had all the vestibular tests, done pt for 1+ years and still dont know whats causing the giddiness, dizziness, vertigo and balance issues. I recently heard that these can be a side effect from letrozole, although my oncologist said she didnt think so. The symptoms are only getting worse for me and now affect me 24/7. Does any of this sound familiar to you? If it is the letrozole, can I hope for relief once off of it? I keep looking for answers and noone has suspected the letrozole. Thank you for listening.
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Hi
I’ve been on Anastrazole for 14 months.
I started with dizziness 3 months ago.
Went to GP . Ruled out blood pressure ( always been fine ) and checked for stroke etc .
They did bloods and referred me for head MRI with contrast.
Was an 8 week wait , despite could be sign of secondary cancer , so I went to see a private neurologist .
They did non contrast MRI and he couldn’t see cancer , everything else was normal .
I went for my NHS MRI too . Was clear .
I’m having some bloods retested next week , as one was a bit out of range .
Have you had iron and B vits checked ?
I read a study that said that lack of oestrogen in menopausal women can affect your balance ( ears , lack of oestrogen ). If you think about it , we need oestrogen for all our bodily functions
Because we are on oestrogen blockers , our oestrogen is even lower .
Luckily, my dizziness seems to have calmed down .
I had a week off tablets , on holiday and when I started taking them again, it came back but had settled again now .
Dizziness is listed as a side effect on the leaflet that comes with Anastrazole , so I can’t believe it isn’t a side effect of letrozole too .
I really empathise with you because , when I had it , it wasn’t pleasant .
Did the neurologist do an MRI ?
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Morning buddhamomma,
I’m sorry to hear that you are experiencing dizziness and vertigo etc. That must be awlful
I’ve been on letrozole two years in August and I have most of the other side effects but I am lucky that I have escaped the dizziness etc
You say you’ve consulted specialists and I understand that must have been even more frustrating.
I know it’s probably been asked already but you haven’t started any other meds/ supplements which may cause these issues?
Also I read another post about the same as you. Lady thought it was vertigo which developed a year after being on letrozole but it turned out to be Labyrinthitis - She saw her GP who carried out the Epley manouevere and she had no further problems with it, so that may be worth checking out
Good luck
Lynn
I’ve had labyrinthitis and it hung on for a long time and affected my balance for years afterwards. Recently I had a virus which gave me similar symptoms and I did what helped before and went to Osteopath who specializes in cranio-sacral work - after 2 treatments I was ok again. If you can find someone locally who does this it might be worth a go - the theory behind it is that your tissues around your brain should have a very faint movement ( circulation of fluid etc.) to the Osteopath who has been trained to detect it by touch . Over the years however injuries and illness can cause tension and prevent proper movement . In my case in 2006 there was a still on the left ( so a lack of balance between the left and right) and my Osteopath managed by gentle massage to restart it. This year it was on the right which is interesting as that was the side I had breast cancer surgery and radiotherapy in 2022. I’m not explaining this well - it sounds implausible and the scientific basis is dubious but the first time I went there was because I had been suffering with vertigo symptoms for almost 6 months and though there was gradual improvement it was so slow but there was quite a swift improvement after the cranio- sacral treatment . I’m a Nurse and my first help came from my GP surgery but really there wasn’t much they could do for me so I had nothing to lose really by trying.
I had also experienced some symptoms associated with chronic fatigue . Some research has said that people with those symptoms experienced improvement with lymphatic drainage and it was this that led me to my Osteopath initially and that was also part of my treatment . She also found a problem with my neck which I thought has resolved - it hadn’t and two vertebrae were moving together instead of independently. She manipulated my neck and that helped as well .
I would suggest you get your neck checked out if possible especially if you think there could be an issue . Letrozole is bad for bones as you probably know and if there’s a problem with your neck it could be affecting your balance. Like one of the other respondents I was on Anastrozole and also noticed that dizziness was listed as a side effect so I also imagine that Letrozole may also cause dizziness . I’ve recently seen and participated in a thread about Letrozole and tinnitus as well. My particular benefit from taking Anastrozole was really very low and I had a type of cancer that rarely spreads beyond the breast so I elected in the end to stop Anastrozole due to joint pain / stiffness and hair thinning . I would never advocate for anyone else to stop but all I can say is to keep asking the Doctors to investigate you and if after every other possibility has been exhausted you decide you have had enough then you could discuss switching to another drug if that’s a possibility or possibly taking a break from Letrozole . Whether or not it then improves would give you your answer .
So sorry that you are going through this xx
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Hello buddhamomma
Thank you for posting.
It sounds as though this is a very difficult time for you struggling to find the cause of your symptoms.
As you mention common side effects of letrozole include headaches and dizziness although these symptoms can also have other causes as @Lynikinz mentions. If the symptoms are caused by the drug, they will often ease once you stop taking the drug.
It’s good to hear you have spoken with your oncologist. When side effects are severe, you may be asked to stop taking letrozole for a short period of time to see if your symptoms improve as @JoanneN says. Sometimes they may suggest changing to a different aromatase inhibitor drug to see if that suits you better. If there is no improvement you may be recommended a different hormone therapy, tamoxifen which has fewer joint-related side effects. Your treatment team will be able to talk to you about the benefits of doing this. Although you say your oncologist didn’t think letrozole was the cause, do talk to them again and let them know the symptoms aren’t improving.
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