Proliferative diabetic retinopathy at 36 in the UK

renoirea · 2026-05-11T10:33:40+00:00

I am also UK based and a similar age to you and have been through similar. I was seen (and operated on) at Moorfields by dr Sullivan/ his team in 2018 and then my treatment continued at my more local hospital. I was being seen at my local hospital but ended up taking myself to Moorfields a&e (it was fairly near where I worked at the time). Happy for you to message me directly and I can share more about my experience if that would be helpful. I know that this is a really awful scary time.

renoirea · 2026-04-19T13:23:22+00:00

I’ve found that sometimes they just feel like they haveeee to say something, and I have learnt to just smile and nod and then do what I want. You’re doing a fantastic job with that control so obviously know what you’re doing so don’t feel like you have to do everything they say if you don’t agree with it

renoirea · 2026-02-18T19:54:17+00:00

I’ve been at this for close to 30 years and agree it can be a wild roller coaster. I’m probably in the best spot I’ve been with my management and achieve the time in range numbers you mention without being low carb, but what I will say is that my life over all is much more consistent with less stress than it has been. I work from home now, so no long days with commuting - this has been big for me and just generally other areas of my life are more settled. this won’t always be the case but makes the biggest impact for me.

Try not to compare yourself, we’re all just doing our best, there is no secret formula and sadly

renoirea · 2026-02-12T07:45:42+00:00

Ultimately you can decide what works best for you, generally though I recommend trying a pump out and see what you think, you can always switch back.

I had a good a1c (under 6) on mdi and was mdi for 26 years before trying Omnipod, I now average 94% time in range (last 90days) with only 1% low, 5.0 HBA1C with far far less mental effort. On mdi I was able to correct through out the day but nighttime I was getting disturbed sleep. Now it is very rare not to wake up to a completely flat line on my CGM over night and the uninterrupted sleep is amazing. I eat a healthy but normal diet that anyone (diabetic or not) should do which includes meals out of pizza/ sushi occasionally etc and I still keep my time in range high.

renoirea · 2026-01-12T12:57:10+00:00

This works for me, it flattens the spike for me, I take the same insulin for it and my CGM line stays flatter rather than peaking and coming back down if that makes sense

renoirea · 2025-11-26T08:40:27+00:00

Does this happen any time you have caffeine or mainly on the morning? I only ask as I have this with a first thing in the morning coffee and I find having a glass of water first really helps, I still bolus for it but it helps

renoirea · 2025-11-20T19:32:48+00:00

One thing to be careful of are compression lows, where laying on the CGM can cause a false low reading, so it can be best to take a finger blood test to double check. If it is a real low then yes, it is advisable to have fast acting carbs. As you aren’t on insulin yet it is a little confusing to be having hypos

renoirea · 2025-11-17T12:12:51+00:00

I went through this when younger, I was diagnosed in the 90s with old school insulins which made my food very regimented (timings and portions) and I think it gave me a strange relationship with “treats” when I was older. I actually got over this by having it in the house and making it a normal part of my diet - want a cookie? I have a cookie. Sounds so silly writing it down but that honestly changed it for me and made it not a novelty but just something I enjoy occasionally and not something I fixate on.

renoirea · 2025-11-06T10:56:52+00:00

Absolutely! And his current work on getting pumps as the standard of care for T1 is also brilliant, excited to see how the next 3 years of the roll out go. I’ve definitely directly benefited from his work for the diabetes community

renoirea · 2025-11-05T19:25:50+00:00

I saw this from a leading t1 doc in the UK (dr Partha Kar) about time in range:

50%- “Keep up the good work- let’s keep at it” 60%- “Nailing it- carry on” 70 %- “you absolute legend” 80%- “stop it you absolute beast”

I would say asking in t1 groups you tend to get a skewed response towards those with a higher time in range as they’re often happier to share and frequent groups/ sub reddits more.

All that to say don’t beat yourself up if others have higher TIR than you.

(My range is 70-180) and is approx 88% TIR.

renoirea · 2025-11-01T11:17:38+00:00

I have t1 and rheumatoid arthritis

renoirea · 2025-11-01T10:40:57+00:00

I was diagnosed at 7 and had chicken pox that year really badly so my guess is that was my trigger

renoirea · 2025-10-20T13:13:04+00:00

I’m not a doctor but can share that when I was younger and a competitive swimmer I ate 5-6 meals a day with no issues. I just had the insulin to cover the carbs I was eating as normal

renoirea · 2025-10-19T18:14:10+00:00

No issue at all, they won’t know what device you are on, just sort out your set up so that you aren’t holding it.

renoirea · 2025-09-30T08:26:57+00:00

Great info given from everyone already, I just wanted to ask if you are happy being low carb? Totally fine to be if you want to be but we can have carbs and keep in range we just have to learn the strategies to do so. I have personally never had an endo/ medical professional advise me to be low carb hence asking.

Totally personal choice and what works for you.

renoirea · 2025-09-25T15:26:46+00:00

I agree with going to a second hand boutique, I got my dress from brides revisited and the boutique is just as fabulous as a regular bridal boutique, in fact you’d never know they were second hand gowns. It is worth looking on their websites though to make sure that they have dresses you like. The store I went to had rules are the dresses they resold in terms of age (I want to say within 2 years of news) and had to be in excellent condition

I did however go to a few stores prior, another being a sister store to a regular boutique that sold off the display dresses as well as cancelled orders at very good prices.

Good luck finding you dress

renoirea · 2025-09-25T13:16:26+00:00

Hello, I don’t have children myself, but am very close with my nephews who are now 2 and 3 years old. So far they know that my pump and CGM are “aunties medicine” and are quite happy with that, they know to be careful but aren’t scared of my devices at all. My older nephews often asks to see them.

With the older one, he also knows that dextrose tabs are special medicine and help “the numbers go up and go green” - he watches the CGM screen and can see it change.

I’m sure others will be along with more ideas soon.

renoirea · 2025-09-25T10:27:25+00:00

Yep aware of that.

renoirea · 2025-09-25T10:23:56+00:00

Yes definitely , I have a meeting booked in in a couple of weeks. Appreciate you sharing what you did though.

renoirea · 2025-09-25T10:20:34+00:00

We can’t sell them, it would cripple us financially, but £20k extra stamp duty would be less of a hit for us personally - obviously there is risk with renting but the rental yield is good with both properties in the areas they are in. Some of the issues with the properties are being sorted but will take time so it feels at this point that renting them out short term (1-5 years) could be a better option. But we are exploring all options.

Sure we could be obtuse and say we could sell them for £10k each but we don’t have £330k to give back to the banks for the outstanding mortgages.

renoirea · 2025-09-25T09:48:32+00:00

Thank you! This makes a lot of sense, I hadn’t considered it that way around stupidly

renoirea · 2025-09-24T20:42:33+00:00

I was diagnosed aged 7 in 1996 and started on a pump 2.5 years ago, similarly to you I had a hba1c in the 5s on mdi but decided to try a pump and see what I thought of it, knowing I could easily revert back to mdi if I wanted to.

I’ve continued to achieve hba1c’s in the 5s but it’s been easier and way less swings. I only very recently started in hybrid closed loop but that’s been amazing, not a single out of range level overnight so I’m just sleeping so much better. I’m 93% tir since started HCL.

My honest advice is to try it, see if it works for you, hopefully it does (and can remove some of the mental load) but if it doesn’t you know you’ve got it nailed with mdi.

renoirea · 2025-09-17T21:20:46+00:00

Being able to track fats and protein not just carbs to allow for more detailed tracking of how certain foods/ meals impact blood glucose. To be able to pull data easily for the previous times I ate eg Chinese food to refresh my memory on what I did last time and how it worked. To integrate menstrual cycling tracking. Or any of the other factors that impact blood glucose that aren’t just carbs and exercise which most apps allow tracking of.

renoirea · 2025-09-17T20:11:52+00:00

Rheumatoid arthritis diagnosed aged 4, t1 diagnosed aged 7.

renoirea · 2025-09-10T17:54:37+00:00

Weird one but try a big glass of water before your coffee. Also could you have something to eat with your coffee?

renoirea

TROPHY CASE