In this guest blog Anne Cooper, who has lived with type 1 diabetes for 35 years and is a senior nurse working in informatics, talks about how silence about the menopause meant she arrived at it unprepared; about the new challenges it brings for her day to day management of her diabetes, and what needs to change.
Page last updated: 03 August 2022, with the addition of links to resources on menopause at the end of the blog.
I’m not one to make a fuss about my health. It’s well known in our family that we are just expected to get on with it and that’s what I try to do. I’ve had type 1 diabetes since I was 16 and so I have had 35 years of coping and managing. Obviously I’ve had good spells and not so good spells but (I’m touching wood) I have never been admitted to hospital because of my diabetes, I have a healthy 24 year old son and I would say I have always sort of done what I wanted to do. I work and have done since I was 16 – I was diagnosed 8 weeks into my first serious job. I have never, since then, had a day off because of diabetes. It’s not that I see it as some sort of battle or anything – it’s just my life.
But then last year something started to change. I have always been able to remember things, where we held meetings at work, who was there and who said what. Last year I felt like I was losing my grip, it was really very scary. Why couldn’t I remember? I really didn’t feel on top of my game. I have a demanding job where I meet lots of people. Sometimes I would know I had met someone but could not for the life of me remember who they were. It was scary and because I thought I was ‘losing it’ I told no one.
Then other things started to happen too. My glucose levels were erratic and worse I seemed to be hypoglycaemic every two minutes. I couldn’t understand it, nothing on the face of it had changed, but everything had. I was scared.
It was getting me down, blood glucose levels that were up and down like yoyos and my husband had started to give me funny looks when I would say slightly odd things, for example the wrong day in conversation, I would say Wednesday, meaning Friday – general confusion seemed to reign. Thank goodness for his tolerance but I did get a few hard Paddington Bear stares.
It wasn’t until I had a conversation with my friends that the issue of memory came up and I started to realise I was probably peri-menopausal. It is so funny that we are all age contemporaries but we had never had a conversation about it before and even now I feel vaguely uncomfortable about telling you my story. It was so wonderful to share and have an honest conversation with other women that I trust, but I still feel that people are likely to judge me – you know that woman who can’t remember stuff?
I fear that the Menopause, or as I have called it the ‘Big M’, is so taboo that it is not discussed generally in society, with the knock on effect that its not routinely talked about in relation to long term conditions; many of which are affected by hormonal changes. As of 2020, there are 19 million adults in the UK who have a long term condition. That’s a lot of people. Do the negative parts of being a woman who can no longer have children, with the stereotype of being ‘dried up’, moody, (more) irrational, and of no use to society, impact on how we think about this (or not) in the wider context of health?
Some would say that there is little enough evidence and information about menopause in general, my challenge is that there is even less for women who already juggle complex and challenging existing long term conditions. I found a Cochrane Review relating to type 1 diabetes and HRT but the evidence was very poor.*
What I want to know is why no one told me that I was reaching the age when things could change for me, not only generally but in relation to my already complicated diabetes management. It was never mentioned, considered or even raised. I’m 51 – did no one think it would apply?
I’m lucky; I have had few of the typical symptoms yet, except the memory and poor sleep. But much more significantly for me I have had to start to take a much more active review of my diabetes control. Little high quality information seems to be available in relation to menopause and diabetes; most is very general and non-specific. Is it too much to ask that access to good quality information and some sort of conversation about it should be routine?
So, here I am writing a blog about something that I even felt was difficult to discuss with my friends. Why? My hope is that people read this and ask questions, that researchers read it and wonder why there is no evidence, that information providers think: ‘Now do we cover the menopause?’ and that healthcare professionals have the courage to talk about it with women who have existing conditions and help them prepare for the life changes.
I don’t want more people to ask, as I do: why didn’t they tell me?
Resources on menopause
The Editors have added these in April 2022. With thanks to @drhannahshort, GP Specialist in Menopause & Premenstrual Disorders, for her suggestions.
- You can find our other blogs on menopause here.
- Balance: Founded by Dr Louise Newson, “a GP and Menopause Specialist who works to increase awareness and knowledge of the perimenopause and menopause, and campaigns for better menopause care for all women”.
- British Menopause Society: tools for clinicians and Menopause Care Resources Toolkit
- Daisy Network, a charity providing information and support to women with Premature Ovarian Insufficiency, also known as Premature Menopause.
- European Society of Human Reproduction and Embryology – Guideline on the management of premature ovarian insufficiency.
- Global Menopause Inclusion Collective
- Healthtalk – Menopause. Here you can see videos of women in the UK talking about their menopause experiences.
- International AssociationA relationship between two characteristics, such that as one changes, the other changes in a predictable way. For example, statistics demonstrate that there is an association between smoking and lung cancer. In a positive association, one quantity increases as the other one increases (as with smoking and lung cancer). In a negative association, an increase in one quantity corresponds to a decrease in the other. Association does not necessarily mean that one thing causes the other. for Premenstrual Disorders: Surgery and surgical menopause for premenstrual disorders.
- Rock My Menopause (created on behalf of the Primary Care Women’s Health Forum)
- NICE guideline – Menopause: diagnosis and management.
- NHS – Menopause
- Women’s Health Concern factsheets
Anne first wrote about this topic on her own blog in January this year and you can read that: The ‘big M’ – more taboo subjects #changethechange. You can follow Anne on Twitter @anniecoops. We’d love you to join in the conversation!
*The Cochrane Review on HRT for women with type 1 diabetes has not been updated since 2013. Neither the NICE guideline on diabetes (June 2022) nor the NICE guideline on menopause (December 2019) address concerns about menopause in the context of diabetes. This remains an important information gap.
Mackay L, Kilbride L, Adamson KA, Chisholm J. Hormone replacement therapy for women with type 1 diabetes mellitus. Cochrane Database of Systematic ReviewsIn systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. 2013, Issue 6. Art. No.: CD008613. DOI: 10.1002/14651858.CD008613.pub2. Cochrane summary of this review: http://www.cochrane.org/CD008613/ENDOC_hormone-replacement-therapy-for-women-with-type-1-diabetes-mellitus
National Institute for Health and Care Excellence. Menopause: diagnosis and management. London: National Institute for Health and Care Excellence; 2019. (NICE NG23) [Issued November 2015; last revised December 2019]. Available from: https://www.nice.org.uk/guidance/ng23
National Institute for Health and Care Excellence. Type 1 diabetes in adults: diagnosis and management. London: National Institute for Health and Care Excellence; 2022. (NICE NG17) [Issued last revised:
Office for National Statistics (ONS). People with long-term health conditions, UK: January to December 2019. London: ONS; March 2020. Web. 27 May 2021. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditio nsanddiseases/adhocs/11478peoplewithlongtermhealthconditionsukjanuarytodecember2019
Well, this is a relief to hear! I am 56 & have had type 1 diabetes for 51yrs. Up until a few yrs ago I was told I was a ‘model patient’ but now my bloods spike for no reason (overnight) & I have wanted to talk to my Dr about HRT but thought it would probably be a flat NO, so haven’t bothered! Maybe I will now! THANK YOU
I’ve been diabetic 33yrs, suddenly having massive blood sugar spikes in night. Goes from 8 to 24 after I’ve gone to sleep and taken correction doses. Happened for 4ish nights per month last year but this year its almost half of the nights per month!!!! I can’t explain it ! Could this be hormonal, even if I have no other symptoms? I’m on constant monitoring and a humalog pump. Control used to be excellent, 5.6 averages for years. I really understand things, but baffled by this. Thx
What a relief to read your story! Thank you. There is so little information on Type 1 Diabetes and menopause. I’m 49 and am going through very similar experiences to other ladies. The insulin resistance is the most scary part… and I’ve not had any real advice from health practitioners, apart from trying to find a support group (which I’m told doesn’t exist at my hospital). Here’s hoping there will be further research into this and also more helpful guidance too …
Same for me all of the above, I have type 2 blood sugar high constantly but got a snigger for suggesting it could the menopause from diabetic nurse
I have been having the same symptoms for over a year; been T1 since age of 5, now 48, with my elder sister and mother having history of menopause late 40’s/very early 50’s. Had my Diabetes Clinic today, and mentioned could my erratic bloods be due to pre-menopause, but he laughed and said I was clutching at straws. Thank god I decide to check things out on the internet! Will discuss with my diabetes nurse, who is much easier to approach, and being a female probably more able to understand. Like everyone else, no one in the medical profession has discussed the possible effects of menopause on my diabetes. Very frustrating, as I was feeling that it was my fault my sugars are erratic, even though I test regularly, and carb count to adjust my bolus insulin injections.
T1 since small baby, over 50 years ago, well controlled until the crazy hormones kicked in (or cleared off). In the middle of finding out how little help there is. Diabetes clinic bounced me to the gynae clinic, where the gynae consultant decided I’d got constipation (yeah gods woman, what are you on about??) – so no help there. Combination pills work really well for a while (1 week to 2 months, depending on which ones, then stop insulin working). Now what shall I try? Fed up with having no energy, no memory (although at times it’s so silly, it’s funny), and ridiculously tired, excessive amounts of bugs and viruses. Best outcome was GP, who actually listens, but we’re still going around the merry go round of nonsense, re no information on T1 and menopause!
I have had type 1 diabetes for 37 years and I too found my blood sugars were erratic because of the menopause. I was not warned that progesteron makes you insulin resistant. Your body produces more as your oestrogen levels drop, in an attempt to reverse this. I had to find this out for myself, and found very little research or guidance out there for type 1, menopausal women.
I am currently going through this now, I thought I was going crazy, what are some things that you learned to can help besides just taking more insulin..
Hi. I am over 50 yrs old and struggling with a number of menopausal symptoms including impacting my usually good Diabetic control. I have been T1 since 7yrs old and also taken thyroxine for 15 yrs. I had ignored HRT due to the associated risks but now considering asking about possible use of patches. Also wondering if it would make it possible to get CGM of some sort to cope with swings in levels I am getting and any potential changes with using HRT? Any advice or experience of using HRT patches would be appreciated.
Hi Allison, I have been T1 for 37 years and taking thyroxin since I was as 5. I’m 54 and definitely peripausal. I’d be interested to hear how you go on with HRT? I’m m actually starting to forget if I’ve taken my overnight injection or not which could be very dangerous if I double up. So frustrating, I work full time and have a 16yr old daughter. It’s quite scary how much I forget sometimes. I have a CGM but that doesn’t tell me if I’ve done my injection or not or how much! Have an HRT appt with my GP next month – Sharon
Hello, 49 years young and 30 years w T1. I am wary of HRT because of possible interactive impact with thyroxine and insulin. I’d like to try the patches. It would be great to know about this stuff/who to ask. Being a human guinea pig isn’t something I really want but it seems like there isn’t a choice. I have the Dexcom G6 so at least it means I have immediate feedback on glucose levels.
Thanks for the article, it read like my description of my life at the moment. Im looking at lots of info but still in the dark as to help my foggy head and mood swings. Dr tells me get is the answer, I’m dubious..
Hello, I’m type 1, 44 and menopausal. I went to Dr who suggested hrt. Patches and coil, going to check with diabetic nurse what she thinks about it all first before I go ahead. Symptoms are bareable but not sure I want to bear them!
Hi Fay. If you dont mind answering. Did you find something that worked for you?
Hi Annie – well done for drawing attention to this poorly documented area. I am a type 1 diabetic (have been so for 26 years – I am 53) and have been on an insulin pump for a year, with reasonable control. However in the last few weeks I have been experiencing excessive hyperglycaemia and night sweats. These seem to occur at the same time every night and I wake up (usually twice a night)assuming that I am hypoglycaemic – however when I check my sugar level, I an either normal or hyperglycaemic. It is starting to get quite exhausting. I have altered my basal insulin levels and had to adjust my insulin to carbohydrate ratio to attempt to control it. I am going to see my GP about it – and to discuss the pros & cons of HRT. This is a topic that has never been discussed by my diabetic consultants….
Reading this article and Helens response is such a relief! I’m late to find this post and maybe no one here anymore but I’m 51, T1D for 10years and now my BG is bouncing around a lot. Same hyperglycemic night sweats you describe and I swear my ratios change daily. I dont feel well and I’m frustrated. Thanks all for helping me feel sane. Please keep posting info as the part re estrogen and progesterone and fact this is a real deal have been very helpful!
Glad to hear that this has helped a little, while you’re feeling unwell and frustrated.
You might also like to read June’s blog ‘Everything I needed to know about the menopause… No One Told Me’: https://www.evidentlycochrane.net/everything-needed-know-menopause-no-one-told/ Many people have shared their own experiences in response, and you can read those at the bottom of the blog.
We have some more menopause blogs here too: https://www.evidentlycochrane.net/tag/menopause/
I hope this helps.
All the best,
Like so many other commenters, I was so relieved to read this along with the comments. After 36 years T1D and pretty good control, I have been so frustrated by my blood sugars. I have experienced what seems like random highs, poor sleep, hot flashes and brain fog. I had to completely change my basal rates. As a side note, I have found that my water intake is also critical to my blood sugars. I usually only see my endo 2-3x yearly, but I finally scheduled an appointment with my GP and I know now what to talk about
Having just googled and read your story it was just like reading about myself! I have just returned from my annual review and wanted to ask and learn about the big m and its effects on your control and would have appreciated someone to talk to about it but came away with nothing and was just told to check my bloods more often! (They forget we never get a break from this!). My GP suggested HRT, antidepressants or herbal remedies. My practice nurse suggested HRT as the only treatment to really work. We can’t be the first type 1 s to ask about this but as you say there is so little info on it. I would be happy to take part in trials. Wouldn’t you?
Thanks for talking about it..
Great article , there is also a gap for women with MH and LD issues
Another Sally here! Thanks so much Annie for this perspective on the menopause. I Remember that some of your concerns came up in a James Lind Alliance research priority setting partnership some years ago – they didn’t make it thru to the top ten priorities but should be published on UK DUETs, I will check. You are right about the lack of debate and sharing of useful information, I am really hopeful that this week of blogs will start to remedy that. I am very surprised how much the menopause has affected me – especially symptoms that I wasn’t even aware of…..
Hi Anne, thank you for being brave enough to share your story. What gets me is how it is treated like a joke by society, the “funny” hot flashes, not sleeping, the constant discounts about older women etc. As someone teetering on the edge of what is to come, these blogs feel like they will be the first sensible and honest information I receive. Thank you, it’s time the tide turned on this, and women are properly informed, oh and men stand a chance of understanding what is going on for us!
Warm wishes, Sally
Thank you so much for commenting. I am hoping that by speaking up at least some people also have the confidence to talk more. We are also trying to spread the work on twitter using the hashtag #changethechange
The are more blogs coming too with more expert and evidence based information.
It’s time to talk about all this!