Type 1 diabetes and managing the menopause with HRT: Dawn's story

I’ve been using HRT (hormone replacement therapy) for about six months. I’d say the perimenopause is like the train and the menopause is the platform. And I’m now stepping onto the platform.

Menopausal symptoms 

I’d reached the end of the line about six months ago. My GP referred me to the doctor at the Well Woman Clinic in our surgery. I was having very low mood, and my hot flushes were becoming more frequent. And I was gaining weight in spite of doing all things you're supposed to.

My hair was starting to thin, and my libido had gone. And as I was becoming more insulin resistant I was using twice as much insulin. My closed loop insulin pump showed I was using one unit of insulin for 5g of carb, compared with 10g around 10 months ago. 

The doctor talked it through and said yes, you’re definitely menopausal, and coming into the menopause.

When I asked about HRT, she said I’m more than happy to prescribe it for you. It was like a lightbulb moment. I’d been so afraid to ask as I thought I’d be told no, that it wasn’t safe.

Old way of thinking

I think that went back to conversations I’d had with the endocrine consultant 30 years ago in the hospital when I was diagnosed.

I was told back then it was dangerous to have more than two children and that for birth control, I’d probably have to have a surgical menopause – hysterectomy – (rather than birth control pills as they contain hormones). And that I’d be doing well if I survived long enough with diabetes to see my 45th birthday.

The very medicalised and paternalistic attitude from that time is perhaps one reason why there has been no research yet on the interaction between type 1 and the menopause!

I also remember trying to speak to my diabetes consultant about the menopause. She said: "You’re a midwife, you know more about these things than I do.”

Peer support has been a massive part in helping me get through the menopause. For the past year I’ve been in a WhatsApp group for women with type 1 diabetes going through the perimenopause and menopause. It was set up by a friend on Twitter.

We’re basically a group of women with type 1 who are really struggling to find information about HRT. And feeling quite at a loss as clinicians don’t seem to know much about type 1 diabetes and menopause.

The support and encouragement from our WhatsApp discussions have given us the confidence to have conversations with our healthcare professionals about HRT.

None of us in the WhatsApp group were taking HRT and then six or seven of us started taking it within a few weeks.

Diabetes UK Northern Ireland has played a big part in women joining our peer support group. We have connected with other women living with type one who want to know more following on from their online sessions on menopause.

The HRT has helped me get back some confidence and helped things like the hair loss. And it’s given me back a wee bit more of a sparkle in my life. I don’t feel like I’m falling off a cliff. And the blood sugar levels have been more stable – probably because I’m getting regular doses of hormone. There isn’t that fluctuation. Even the appearance of my skin is clearer. 

I liked the fact that I was on patches, as I’m used to having things stuck on me, like the pump and the glucose sensor. And I knew if it didn’t work out, I can take it off. 

How my peers with type 1 have fared with HRT 

My peers in the group have had mixed experiences of using HRT. They started out on the same dose of HRT patches and tablets. Some have responded well and some have needed to increase the strength of oestrogen patches in particular. And others have found it didn’t work for them as they thought it would. One of the women in the group found moving to the HRT gel worked significantly better for her.

I wish I had been able to access reliable information to ask the questions about being a woman with diabetes and wanting to use HRT earlier. I also wish that clinicians had been better able to answer the questions I did have.

Everyone of us in our WhatsApp group have taken part at all ages in diabetes research and trials and investigations. But now we’ve hit menopause, nobody has been interested in how that affects diabetes.

Tracking back

I started having menopausal symptoms from around the age of 42 when it got harder to manage my blood sugar levels. 

What was helpful was getting a Freestyle Libre. It showed me trends in my blood sugar levels. If I woke up in the night or was at work and didn’t know if I was having a hot flush or a severe hypo – the symptoms are so similar – I could tell by the levels.

Career break

I was working in a very busy maternity hospital in the delivery suite. And when an opportunity came up four years ago to take a career break and work on a PhD, looking at type 1 pregnancy and wearable technology, I seized it. 

I felt like I’d lost confidence at work and needed a change of scenery. Looking back that was probably a definite sign that the menopause was kicking in. Studying has been a safe place and a way to step out of the busyness. I’ve kept up one day a week working as a midwife, so I don’t lose my skills. Having the mix of academic and person-focused work has been a privilege.

My husband and four sons aren’t really clued into female hormones and the impact they can have. It’s been good to have support from peers: a place you can go in safety and say ‘Girls, I’m really struggling, what advice do you have? What’s working for you?”

Photo by Charles McQuillam

Peer support is available for women going through the menopause with any type of diabetes at https://twitter.com/MenopauseMither. Members of the private WhatsApp group Dawn is in have helped set it up.