This is the first time I have posted anything, but am seeking advice.
I am a type 1 diabetic who was diagnosed with stage one breast cancer in November 2020. I had a lumpectomy, radiotherapy and because I was ER+ and PR+ I was put on Letrozole.
I take Letrozole at night and am doing well but apart from the fact that after 6 months my cholesterol levels went dramatically upwards, I have noticed on numerous occasions that my blood glucose has gone up exceptionally high during the hours I am asleep.
I have read somewhere that Letrozole can cause high blood sugar levels but it is not a recognised side effect. I wondered if there was anyone on the forum who had noticed anything similar.
The AIs reduce /obliterate oestrogen , which we need to make the other hormones work .
I’m underactive thyroid , 3 months into
Anastrazole and the GP practice pharmacist is sure that it will affect my thyroid .
I’m assuming the same for insulin , as a hormone , especially as yours is type 1 diabetes.
Can you chat to your GP? Are you under an encore? X
Letrozole is well known fir increase in letrozole for some people…me included unfortunately…my cholesterol was 4.2 pre letrozole…after a year 5 …now after 3 years 6.6 …i have a bmi of 20.7 so not overweight …all other bloods within normal limits …i have now cut out all sweet stuff, pastries, bread and fatty foods …i dont eat meat anyway…now eating porridge for breakfast…lots pf salmon and mackerol…nuts and berries in an attempt to reduce my cholesterol without needing statins…my tumours was 7/8 er + so very scared not to take letrozole …will be retested in 3 months
I don’t have this issue but if you’re under the care of a specialist for your diabetes I would I form them. If you aren’t currently under a specialist it might be worth asking to be referred if you can’t speak to your GP. At my surgery they have made a Health Care Assistant the first contact for diabetic patients you need to speak to a Dr. or at the very least an experienced Nurse. Oestrogen blockers work on the endocrine system and diabetes is an Endocrine problem so you can vet the two are related . I would also consider reporting it to the team who prescribed it if you haven’t already and reporting it as a side effect .
Have you looked into / tried changing brands at all as this seems to help some people . Xx
Thank you, I hadn’t thought about the possibility that different brands may also play a part as well, it may explain why I seem to go about a month with no issues and then a month where I have the problem virtually every night. I have a hospital appointment coming up with my Diabetes team so was intending to raise it with them. I had raised the issue of my cholesterol shooting up last time which I definitely connected to Letrozole, and what you said is making total sense.
Thank you
Thank you, this is useful to know that if it impacts someone with a thyroid condition it is most likely to impact someone with diabetes. I am under the care of a hospital team with an appointment coming up in August so was intending to raise it and now feel even more sure that I need to do so and see what they say. The breast cancer team were aware of my Diabetes but as they said to me at the time they had never treated anyone with breast cancer who also had type 1 diabetes so this was all novel to them and I suspect the connection was never made about the potential impact. Hopefully, my diabetes team can help me to resolve it.
My oncologist said it shouldn’t . They just want you to take the tablets .
But I trust the pharmacist. Will see what my bloods show next week , compared to pre breast cancer test in October .
Sometimes they don’t seem to see all the ramifications in regard to medical history. Cancer always seems to come first and shove everything else into the background but that doesn’t always reflect our lives day to day . Prior to getting BC I had a retinal being occlusion which has permanently damaged the sight in my left eye but even though I was 56 at the time I was initially prescribed Tamoxifen which I was afraid to take because there’s a one in ten chance of ocular damage . I was afraid to take it and when I saw the Oncologist she agreed though my appointment with her was in relation to radiotherapy and if I hadn’t mentioned it I’m not sure she would have done anything about it
Sometimes it feels infuriating (maybe also a Letrozole side effect) that my medical oncologist is totally unconcerned about heart palpitations, high blood sugar and high cholesterol. Mine told me that it was up to me if I want to take it or not but they recommended I take it. The surgeon and radiation oncologists offered referrals to other MDs but insurance is an issue. I try to make myself not give up and instead be a broken record. That has sometimes worked for me. I have 2 more years then I’m done. The recommendation about an endocrinologist seems like a good idea. I’m going to do that.
@JoanneN@bethdarling - I completely agree with your sentiments. The oncologists’ main focus is to treat the cancer. They are not concerned about anything else, e.g. I am pencil thin, unable to gain weight. Onc. does not appear to be concerned at all. I also have arrythymia. Again, the onc doesn’t appear to be too concerned. But surely they should look at the overall picture in terms of our health. I just don’t understand it…
I have to say I stopped taking it but then would was lucky to be particularly low risk and I felt that my other health problems would be more likely to kill me than my cancer and more quickly if I kept taking Anastrozole than if I didn’t take it. The surgical team felt my decision was reasonable and the Oncologist had discharged me at this point. Only time will tell if it was the right thing to do but I try not to worry about it. Xx
It’s great to hear that you’re doing well after your treatments. Regarding your concern, it’s true that Letrozole isn’t widely recognized for causing high blood sugar, but hormonal therapies can sometimes have unexpected effects on glucose metabolism.
It might be helpful to discuss this with your endocrinologist or oncologist, as they can offer personalized advice and may suggest monitoring your blood glucose more closely during the night. Additionally, adjusting your diabetes management plan might be necessary.
Has anyone else here experienced similar issues with Letrozole or other hormonal treatments? I use as supplement Inspilar – Diabetes anyone using it ?
The fact that your er ‘score’ is 7/8 doesn’t mean you necessarily have a high risk of recurrence. I too have er 7/8. The NHS Predict tool is used to work out the likely benefit of taking letrozole. It takes into account the size of the cancer, how it was discovered, age of person and various other factors. My added benefit was less than 1% so i stopped taking lettozole as the side effects were so debilitating.
On the new Predict, mine is 1% . But I had an oncotype that showed 5% recurrence IF I take AIs for 5 years .
Predict is heavily weighted to ductal , I have lobular , which did not show on a mammogram . I found a lump.
The oncotype asks what type you have .
I’m determined to try the Anastrazole for as long as I can tolerate it . Even if that’s not 5 years ( my recommended ). 10 years would be too long ….
Dear @ AMWG, Its good to meet another breast cancer patient with type 1 diabetes. There are not many of us about and, although oncologists ask about pre existing conditions before starting treatment it has been my experience that these are recorded and then completely ignored. As for copying in our diabetes consultant to our cancer letters that is way too difficult! I have been on Letrozole for 7 months and now give 2 extra units of Levemir in the evening to keep levels steady. I am also on 3 monthly cholesterol monitoring at my own request. High inflammation isnt helping my glucose control either. And dont get me started on dexamethasone!!! The oncologist nearly killed me by prescribing those awful injections to raise white cell count after my first chemo - it caused such a massive hypo that needed 2 cartons of orange juice and endless biscuits to raise. It was a miracle i woke up as i live alone and could easily have slipped into a diabetic coma. When i raised issue with oncologist she said she had since read up on this (after the event) and acknowledged it was a recorded side effect. HMMM. I Suggested researching it first would have been the right way round. Am I angry about this lack of joined up thinking/one dimensional approach? You bet I am. Rant over for now. Love Tulip x
@tulip29, thank you for your email, this has made me feel more reassured that I am not alone and can raise this confidently with my team. I feel sometimes that I am fighting an uphill battle as it is hard enough trying to get my head around a cancer diagnosis without having to navigate the impact it has on Diabetes control, you have made me feel that I am not alone and totally get your need to rant as that is how I am starting to feel too, whilst at the same time knowing I need the hospital team’s help, but having information is forearmed. Hope everything works out for you.
@olivepoppy, useful to hear you had information on your risk level for recurrence. I never had that, I was simply told I was 8/8 ER+ and I needed to take Letrozole for 10 years to minimise the risk of recurrence. To be honest I am probably more risk adverse than my oncology team as my Mother had breast cancer and died of it within 13 months of diagnosis so this has rather informed my personal choice without knowing what my actual risk level is. However, you have given me an idea of asking what my risk level actually is., at least then any choice I make is properly informed, so thank you for this.
…i have a bmi of 20.7 so not overweight …all other bloods within normal limits …i have now cut out all sweet stuff, pastries, bread and fatty foods …i dont eat meat anyway…now eating porridge for breakfast…lots pf salmon and mackerol…nuts and berries in an attempt to reduce my cholesterol without needing statins…my tumours was 7/8 er + so very scared not to take letrozole …will be retested in 3 months
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