Down in the dumps, tired and a bit lost :(

[ClaudiaKiwi]

Hi everyone
It’s been a (long) while.

I need some advice. Please.

I’m constantly tired. I may have the odd day where I think ohhh so this is kinda normal but literally sometimes I can sit down and I can almost feel myself want to zombie off and my eyes just want to close.

I work a really busy job and yes pretty crazy hours - work life balance is crappy to be honest but it’s all of us at work, not just a me thing.

Question is: is tiredness a ‘thing’ with diabetes ? I’m still learning about it all and every time I think I’m getting there it’s like I realise how much more I have to learn. I’m not a year post diagnosis yet.

I eat low carb and have removed a lot of dairy and changed to non dairy but I can’t quite say goodbye to cheese. I’ve stopped eating red meat (I didn’t eat hardly any to begin with and used to be non red meat eating for years but started again god knows why) so I eat salmon and I do eat eggs sometimes. I take spirulina and plant based fruit and vege capsules daily. I am increasing my walking gradually pushing myself a little further like getting off the bus one stop earlier type thing. I keep my fluids up and don’t drink more than 2 coffees and maybe 2 teas max per day other than that I drink water. I sleep ok most days but I do occasionally wake really early and struggle to go back to sleep. My skin, hair and nails are all good. Cognitively I am good. I’m just tired and some days feel ancient. Some days I feel when I’m exhausted and walking to the bus etc a bit pins and needles in my fingertips but it doesn’t last long and is not often. Other than that I just don’t know. I do sometimes have pain in my stomach - slightly to the left and I’m a little nauseous and it’s uncomfortable but nothing I can’t handle and it’s not so bad it gets in the way. I have only had this since being diagnosed and it is a sometimes thing but I can be an odd feeling and makes me want to not eat.

I sound like a hypochondriac! Honestly I’m not but man I know things have changed for me since diagnosis.

I saw the specialist a couple of months back and it was a complete waste of time. He just sort of mumbled and handed me a blood test form for pre next visit which is October. Just said stick with my medication and testing and said little else.

I do get a hypo about once a fortnight and when I do they seem to shatter me afterwards. Is this normal ?? I can usually bring my levels up fairly quickly but god I can’t stand them.

So I am rattling on here but just don’t know how to describe how I feel. Any thoughts or suggestions ? I just feel low and a bit flat and down and I’m like *sigh* so would welcome any comments or thoughts etc.

Thank you x

 

[Pumper_Sue]

Have you been to see your GP? If you have pins and needles that is often a sign of being anaemic. Also the fact you have changed your diet so drastically might not be helping. You need to eat a healthy balanced diet whilst counting the carbs in the process and then adjusting your insulin to match the intake.

Just seen your other post and see you are on metformin and mixed insulin so the matching carbs to insulin adjustment is non starter.

The anaemia is though as Metformin does cause people to become short on B12.

 

[Sally W]

Sorry you’re feeling low. I’m no expert but since eating low carb I am eating more protein than I used to. My diagnosis came about purely through exhaustion like you. Then a subsequent blood test revealed the diabetes. If you have removed dairy and red meat I wonder if it’s a lack of iron or something? Are you testing to see if certain foods are causing spikes, which may result in tiredness?

 

[ClaudiaKiwi]

Sorry you’re feeling low. I’m no expert but since eating low carb I am eating more protein than I used to. My diagnosis came about purely through exhaustion like you. Then a subsequent blood test revealed the diabetes. If you have removed dairy and red meat I wonder if it’s a lack of iron or something? Are you testing to see if certain foods are causing spikes, which may result in tiredness?

Hi
Thank you for coming back to me - I take the added spirulina to ensure I don’t go low in iron and eat loads of spinach and raw greens and brocolli and nuts etc.
I haven’t changed drastically - have just slowly removed things but replaced with very healthy stuff like changing cows milk to oat milk and dairy yoghurt to soy yoghurt etc. I’ve never been great on iron though, ever. I have also in the past had to have B12 jabs and I wonder if maybe I need one ?!
My GP is a bit hopeless and I never see the same one twice. I never feel I can have confidence in them. Hence feeling a little lost.

 

[Sally W]

Hi
Thank you for coming back to me - I take the added spirulina to ensure I don’t go low in iron and eat loads of spinach and raw greens and brocolli and nuts etc.
I haven’t changed drastically - have just slowly removed things but replaced with very healthy stuff like changing cows milk to oat milk and dairy yoghurt to soy yoghurt etc. I’ve never been great on iron though, ever. I have also in the past had to have B12 jabs and I wonder if maybe I need one ?!
My GP is a bit hopeless and I never see the same one twice. I never feel I can have confidence in them. Hence feeling a little lost.

B12 could certainly be a cause. I have the same with my GP. But I do think you need to pursue them. A shame but persistence in having a test could be the answer?

 

[ClaudiaKiwi]

Sorry you’re feeling low. I’m no expert but since eating low carb I am eating more protein than I used to. My diagnosis came about purely through exhaustion like you. Then a subsequent blood test revealed the diabetes. If you have removed dairy and red meat I wonder if it’s a lack of iron or something? Are you testing to see if certain foods are causing spikes, which may result in tiredness?

I feel if I eat red meat I get queasy and anything too rich so peeled back my diet to healthy salads and veges with salmon and chickpeas for dinner and sometimes some cheese or eggs instead of the fish etc. I have a Vogel bread sandwich at lunch with cucumber and tomatoes etc and an avocado and a yoghurt and sometimes a piece of fruit. I nibble on nuts in between if I am hungry. I also have some date balls for a mid afternoon treat with a cuppa and have maybe one or two some days. I have porridge for breakfast or sometimes a plant based protein shake with soy yoghurt and strawberries and sunflower seeds. I find since eating this way I feel less sluggish. I’m still tired but was so sick pre being diagnosed last year (I thought I had cancer and was pretending not to notice) and then literally collapsed and was rushed to hospital. It really hit me hard.

 

[ClaudiaKiwi]

B12 could certainly be a cause. I have the same with my GP. But I do think you need to pursue them. A shame but persistence in having a test could be the answer?

I think you could be right. I will push push with them. I’m used to have a jab every couple months back home in NZ and since coming here have not had any and I’ve just tried to keep my spirulina up etc. My GP practice is almost like stepping into some scary vortex of very young locums who just seem to want to make you speak fast and leave. Awful.

 

[SB2015]

Hi Claudia

I reread your details when I read that you are mixed insulin to check what type of diabetes you are on.
It is very unusual for T1 to still be using mixed insuiln. It is very inflexible and difficult for anyone to keep their BG in the level. You also then need to eat to match the injections. I am wondering whether a change to Mutiple Daily Injection (MDI), which is what is now recommended for T1 could make you feel a lot better.

The advantages of MDI is that you can match your insulin to what you eat at each meal and when you want to eat that. You would still do a background insulin to deal with the glucose released by your body, and then inject quick acting insuion for the carb scale that you eat. This can enable you to keep your profile of BG a lot smoother. That can then help you to feel a lot less tired. I know I feel very rough when my levels go high.

The only times I hear of mixed insulin being used is where someone is diagnosed and cared for in the GP Practice. Can you ask for a referral to the hospital specialist team, especially as you have already said that your GP is unhelpful.?

 

[ClaudiaKiwi]

Hi Claudia

I reread your details when I read that you are mixed insulin to check what type of diabetes you are on.
It is very unusual for T1 to still be using mixed insuiln. It is very inflexible and difficult for anyone to keep their BG in the level. You also then need to eat to match the injections. I am wondering whether a change to Mutiple Daily Injection (MDI), which is what is now recommended for T1 could make you feel a lot better.

The advantages of MDI is that you can match your insulin to what you eat at each meal and when you want to eat that. You would still do a background insulin to deal with the glucose released by your body, and then inject quick acting insuion for the carb scale that you eat. This can enable you to keep your profile of BG a lot smoother. That can then help you to feel a lot less tired. I know I feel very rough when my levels go high.

The only times I hear of mixed insulin being used is where someone is diagnosed and cared for in the GP Practice. Can you ask for a referral to the hospital specialist team, especially as you have already said that your GP is unhelpful.?

My next hospital review with the specialist team is early October. I’m going to ring the hospital DSNs today and leave a message and ask for my review to be moved forward. I’m def not going to waste my time with the GP. The specialist time before last said he would review MDI next visit but then next time I saw someone else and all he wanted to do was talk and talk about work life balance (I work for the NHS and he knows that) and it was a weird visit. I was too tired to argue or challenge. I need to be my own advocate here and push and see where it gets me. I def want off the metformin I just know it’s not right for me. It’s weird.

 

[SB2015]

My next hospital review with the specialist team is early October. I’m going to ring the hospital DSNs today and leave a message and ask for my review to be moved forward. I’m def not going to waste my time with the GP. The specialist time before last said he would review MDI next visit but then next time I saw someone else and all he wanted to do was talk and talk about work life balance (I work for the NHS and he knows that) and it was a weird visit. I was too tired to argue or challenge. I need to be my own advocate here and push and see where it gets me. I def want off the metformin I just know it’s not right for me. It’s weird.

Sounding like a good plan. When you ask for a change of date, that may be a good time to ask to see a different consultant.

Keep us posted, and go armed with questions. I found it good to take someone with me in the early days and they had a list of my questions. They were able to make notes which we could look back at later, and prompt me if I forgot any of my questions. VERY useful.

 

[ClaudiaKiwi]

G

Sounding like a good plan. When you ask for a change of date, that may be a good time to ask to see a different consultant.

Keep us posted, and go armed with questions. I found it good to take someone with me in the early days and they had a list of my questions. They were able to make notes which we could look back at later, and prompt me if I forgot any of my questions. VERY useful.

Great suggestion. Thank you

 

[Pumper_Sue]

I think you could be right. I will push push with them. I’m used to have a jab every couple months back home in NZ and since coming here have not had any and I’ve just tried to keep my spirulina up etc. My GP practice is almost like stepping into some scary vortex of very young locums who just seem to want to make you speak fast and leave. Awful.

This sounds as if you may have pernicious anaemia which means you can not absorb B12, this can be life threatening.
Please ring your GP at least so you can ask for bloods to check the situation.
My uncle died due to lack of B12 which was caused by a failure to do a simple blood test. Point out to them that when in NZ you had regular injections and nothing since coming to the UK.

 

[ClaudiaKiwi]

This sounds as if you may have pernicious anaemia which means you can not absorb B12, this can be life threatening.
Please ring your GP at least so you can ask for bloods to check the situation.
My uncle died due to lack of B12 which was caused by a failure to do a simple blood test. Point out to them that when in NZ you had regular injections and nothing since coming to the UK.

Thank you.
Yes I definitely think you could be right on pernicious anaemia. I have a few cousins back home with it although I was never formally diagnosed for me I truly wonder if I am the same. I just know I feel out of sync and it’s pullig me down.
Sorry to know your Uncle died when it could have been prevented. That’s truly rotten

I really appreciate the support from everyone on here. Kia Kaha x