Type 1 & the Big "M" - Am I Peri-menopausal?
About ten years ago, I was talking to my parents over an early morning coffee. I had planned a day off work, had dropped my youngest at junior school and walked from there to meet them in a local coffee shop. I was 43, had already been living with type 1 for 35 years and was used to just getting on with it all. However, it was getting harder and harder. Having successfully navigated two pregnancies and breastfeeding two babies, family life had settled into a reasonable routine and blood glucose levels were generally okay. If they were ever high or low, I could often attribute a cause for this and file it away under things to remember and try to avoid repeating in the future. But… this was all changing.
I was having far greater variability in blood glucose results, unable to really pinpoint anything I had done differently and on occasions was left feeling quite vulnerable, out of control and confused about what to do to try to fix things. I remember off loading to my parents. My mother’s reaction brought back her vivid memories from over thirty years ago. These were the same frustrations and difficulties she remembered dealing with in my pre-teen/teenage years. Even with the lack of sophistication of type 1 treatment in the early 1970s, having got her head around the requirements of managing the condition with the very basic tools at her disposal, she had become increasingly frustrated with the difficulties in dealing with the glucose variability I started to experience just before entering my teens.
So, if this was variability similar to adolescence, was this signaling the start of the peri-menopause? My adolescence in reverse? I set about trying to find out what information was available on managing the menopause with type 1 and what I could do to help myself. There wasn’t much out there.
I trawled the internet. I would spend my lunch hours in bookshops, reading chapters and scouring the index of self-help books. There was the standard information on the menopause but nothing specific about managing it with a condition like type 1. I contacted Diabetes UK and received a letter back from them in November 2009. “We are currently not funding any research into the effect of hormones in peri-menopause.”
They did include an article from Balance magazine, published in May-June 2006 entitled “All change”. However, much of it was a general look at the menopause with only a couple of specifics relating to type 1:
“Unsurprisingly, for women with diabetes, the menopause can be more complicated. Compared to women without diabetes, women with type 1 are more likely to experience menstrual irregularities and twice as likely to have an early menopause ….. you may notice that your blood glucose levels go up and down more than usual …… You may also experience stronger and more frequent episodes of low blood glucose, especially at night, further interrupting a sleep pattern already disturbed by hot flushes and night sweats. Sleep deprivation in turn causes further fluctuations in blood glucose levels and poor control.”
So, looking back on this, what were my frustrations?
I was caught unaware. It seems ridiculous now but it was not on my radar. I went through a winter convinced I was fighting off flu. I kept having these episodes where I would come over all hot & clammy but it didn’t ever develop into anything more, so my flu vaccination was obviously doing its thing, right?
I am sure that part of the problem is that we are busy juggling work and/or family commitments and rarely focusing on ourselves. NICE guidance (NG23) issued in November 2015 on the diagnosis and management of the menopause would suggest that at least offering the opportunity to start a conversation would be beneficial. Yet, no HCPs have ever raised the topic of the menopause and the impact that it may have on my type 1.
So, we need to talk! Arguably this is a problem that all women face when approaching the menopause. It is an area that I have found is not talked about much by my peer group, unless they have type 1. Then, it crops up regularly because of the realisation of how ill-informed we all feel.
By contrast, I remember my first clinic appointment after getting engaged. The ring was spotted and I was given a preliminary talk on the importance of planning pregnancies with type 1 due to the hormonal impact on blood glucose levels and the importance of active management to ensure the health of the baby.
There is general information available but it is that offered to all women suggesting healthy eating, exercise and a reduction in caffeine and alcohol will all help to lessen the symptoms. The specifics I have found really don’t help anyone - they suggest testing blood glucose levels 3 or 4 times a day to talk through changes with HCPs. My experience is that changes are very unpredictable and frequent. I have had weeks at a time that have reverted to being relatively stable and will then have a lengthy period of weeks where every day is rocky, every blood glucose response to known meals, known work patterns, known daily dog walks undertaken at the same time every day is never consistent. So, waiting to talk through changes at hospital appointments will not come close to helping with the management of this.
With many other areas impacting the management of type 1 – pregnancy and exercise for example, HCPs are recognising the importance and benefits of trying to equip patients with the knowledge on how type 1 may need to be managed. Life carries on away from the hospital clinic. They are not told to wait to discuss changes and best ways to manage things at their next appointment but given techniques to experiment with in the outside world. That is what peri-menopausal women need too.
I am all for understanding the basics of the menopause and experimenting with general lifestyle changes but on a practical level this is all far too vague. I have heard comments made that the reason there is so little information available is that everyone will have a different experience. I agree – I am sure that fertility levels during reproductive years affect your experiences in the peri-menopause. However, is that a reason not to try to improve information and guidance? Type 1 women undertaking pregnancies will have different experiences but that hasn’t stopped time and money being ploughed into research and providing help and advice on managing the hormonal changes.
So, to begin to address this deficit of information, I am writing a series of blogs about my experiences of managing type 1 throughout the peri-menopause. I hope this will help others to understand the range of changes that may affect them and initiate the much needed conversations with HCPs.
I am writing a series of blogs about my experiences of managing type 1 as I approach the menopause. I hope this will help others to understand the range of changes that may affect them. However, I am very aware that my experiences may well be very different to yours…. So please use this for ideas, discussion with HCPs and not as gospel. Please talk to your team before experimenting with techniques that have worked for me. Please experiment slowly and safely, to see how you react when trying to find techniques that may work for you. It has taken me nearly five years of self-funded CGM use and trial and error, to come up with my tool kit. Even then, it never works all of the time!