I’m really hoping someone, anyone! Can help, since I started tamoxifen in Nov, I have had a thirst that I just can’t seem to shift! I’m drinking in excess of 3 litres a day ( this has increased in the last 2 weeks from 2 litres ) - now I know waters good for you, but im going to turn into a human water bed if it gets worse! I had an onc meeting today, didn’t see MY onc though, she said thirst isn’t a SE of tamoxifen, and more or less made me feel like I’m making it up, does any one else have the same symptoms? Or am I just going completely bonkers! I can’t leave the house without a drink, and feel like its starting to take over, my mouth feels like I’ve been chewing cotton wool!
Hi – unquenchable thirst is a fairly distinctive symptom of possible diabetes, so, yes, do please see your GP soon, who will be able to do a simple test to check your blood sugar.
Marilyn x
Hi I also have terrible thirsts since starting Tam over a year ago. I was tested for diabetes as my daughter has it, but it came bacvk clear and the docs. says thirst is not as side effect of taking tam. but too many of us are saying the same thing so surely it must be!!!Joycexx
Thank goodness I’m not alone! Thank you all do much for your replies, I had a new patient medical thingy last week as I’ve changed gp, nurse did urine dip test for sugar and that was clear, and I have only had this symptom since starting tamoxifen, but it has worsened over the last few weeks, so it had to be a SE even if onc thinks I’m a loony!! She did take a blood test but told me it was a waste of time as she has never heard of anyone with this SE, but she would do bloods to put my mind at rest - good of her!! I will take your advice and if I don’t hear anything about my blood test in the next few weeks I’ll take myself off to my gp, also pineapple is going on shopping list thanks theresa for that tip.
Hi Ladies on the information for patients leaflet which came with my Tamoxifen it says " If you start feeling sick or vomiting or develop thirst, loss of appetite,constipation,weak muscles or confusion,tell you doctor as this may be due to too much calcium in the blood"
My brand of Tamoxifen is Wockhardt but I would assume they all have the same SE’s. may be worth checking your leaflet and taking it with you when you go to the Dr’s hopefully they will take you seriously if they see it in black & white
Thanks modbird,
I told the onc that it said to inform docs if a thirst develops, she just gave me a withering look and said I’ve never heard of that, usual SE are hot flushes, anyway she did take a blood test, so if there is anything untoward going on, hopefully I’ll find that out, I’m told OH maybe its all in my head, so I’m going to try and not drink as much, see what happens . Next time I go though I will take the leaflet with me, so she can’t say I’ve made it up! X
I suppose the problem is that all the medical peeps know the most common SE’s but perhaps aren’t always aware of the less common.
Crazy Cat I would check that they did check the calcium levels when they checked your blood as if she isn’t aware of the SE she may not know the effect of the SE.
Thanks girls for your replies, I’m not having hot flushes elinda, so can’t put thirst down to that, I was really hoping I was going to get an explanation for the thirst from my onc appointment, so I kind of feel a bit deflated now, quaffing copious amounts of water for the next 5 years fills me with dread, especially as yours hasn’t gone away Linda, has it not drove you mad, I feel like I’m half way there already!
Ah well only another 4 years 9 months to go - hope we don’t have a water shortage this summer LOL
How frustrating for you! A blood glucose test would be more accurate than a urine dipstick. I think if it were me I would ask my GP to just check this so you can definitely rule out diabetes.
I’m assuming my evening thirst is hot flushes but perhaps its the tamoxifen… I don’t think they know or officially recognise all the side effects. I had some really odd ones during chemo including a terrible purple blotching and rash which the doctor hadn’t seen before. She said they see hundreds of people but it may only occur as one in several thousand.
Perhaps this is one of those.
Alternatively there is another form of diabetes which doesn’t show up with a glucose or urine dip test. This is diabetes insipidus (as opposed to diabetes mellitus) which relates to a hormone produced by the pituitary gland.
Vicky suffers from this due to a mass on that grew on the gland but it is well controlled by medication but until that point she was drinking up to 16 litres a day. Her first visit to GP (6 months prior to initial diagnosis of BC) she was given then urine dip test and when that proved negative was told it must be in her head (all too true in the end) and had she tried not drinking?
It’s most likely a SE caused by the meds but worth mentioning nonetheless.
Stuart
So it must be a SE of tamoxifen, as there are more of us experiencing the same thing, I think as I saw my onc on Fri pm, she just wanted rid of me so she could start her weekend!
Stuart - thanks for your info, I will go to docs next week if I haven’t heard anything about my blood test, 16 litres though!!! I’ll stop complaining about drinking 3
Hi ladies, I also have a terrible thirst all the time, have started to carry a bottle of water with me where ever I go. Then there’s the getting up at night for a wee all the time. I thought it was me, the other thing I’ve noticed is the roof of my mouth is very sore, feel like it’s burnt, and I haven’t started my chemo yet. Any one else have that and do you have any remedies.
I took Tamoxifen for 5 years and this wasn’t a side effect but I have been on Femara for about 18 months and my mouth is so dry, drinking water all the time, have burning mouth, tongue etc. My GP has tried me on various things, antibiotics, thrush tablets also had blood tests, nothing showed up but nothing helps. I am seeing my Oncologist in April so will ask him. The trouble I have found with my Onc is that he really doesn’t want to know about side effects of the treatment I happen to be on at the time.
My mouth too feels sore and burnt especially the tongue, it feels swollen and really tender, quite strange in all.
Hope you have better luck with your onc hazel, the one I saw said it wasn’t a SE, she had never heard anyone with my problem, well I’m going to direct her to this thread!
Hi
Did you ever get to the bottom of this? I’ve been like this nearly a year. I’ve been referred to endocrinology bit not til April. They think it’s diabetes insipidus which has freaked me out as this can be SE of a tumour on the pituitary gland. Can’t seem to find much about it on line relating to BC xx
