Diabetes and…

[everydayupsanddowns]

Hello folks

I was chatting to a new member who said they were feeling quite isolated because they are trying to balance diabetes and spondylosis.

One of the challenges they face was balancing the needs of more than one long-term healthcare condition. And it struck me that we have quite a few members who continually have to balance the needs of their diabetes alongside something else, whether that’s something dietary like IBS or Crohn’s, something autoimmune like Addison’s or RA, a mental health condition, Parkinson’s, chronic fatigue, nerve damage, kidney problems or something else entirely.

Do you live with multiple conditions? How do you find they interact? Do the needs of one make managing the other harder? Do you have any tips or suggestions? Or simply want to let off steam about the frustrations of it all?

 

[Proud to be erratic]

This is, yet again a great post @everydayupsanddowns.

I think most people with Type 3c or any of the other flavours of T3 have (almost by definition) at least one other condition. My own co-morbidities are relatively modest: being a Creonista is a nuisance but provided I remember to take my Creon its very manageable and minor; its taken over 4 years to regain bladder control after my original surgery, which has been deceptively debilitating; but overall having no pancreas is not as bad as one might think, in relation to some having pancreatitis or steroid induced diabetes.

I do think the biggest challenge is the blatant absence of anyone having a holistic view of my multiple conditions. They are recorded on my medical records and a couple of my Consultants have specifically referred to these. But for the most part others are pretty oblivious to these multiple conditions and it has definitely been essential that I have taken an active stance in nudging different people to think more broadly or engage their brains before taking ridiculous stances.

I am still bitter about my former GP trying to remove my test strips then ration me to a maximum of 4 x daily. She absolutely knew that only months before I'd had a total pancreatectomy; she asked my former DSN for her view, who also stated I didn't need to test. This dialogue was done furtively, I was not consulted and found out when a Receptionist told me after my repeat prescription was bounced. Yet my hospital discharge paperwork recorded me as T1. I lost all respect and trust in both my GP and that DSN.

Without wishing to deflect from this excellent opportunity for sharing "Diabetes and ..." I can't help deducing that getting a D diagnosis nowadays seems appallingly presented to far too many patients. It's a different problem, yet ...

 

[s'nic]

I do think the biggest challenge is the blatant absence of anyone having a holistic view of my multiple conditions.

I think this is the biggest problem with healthcare providers, it's unforgivable since it's all right there on the computer screen these days. The other problem for me is the inability to talk to anyone regarding interconnected problems.

I had an ultrasound on my liver. I had self-diagnosed and told the doctor (who I knew would listen) that I thought the pain I'd told doctors about since 2021 was a liver problem (I'd previously mistakenly spoken of it in connection to my lungs .. but heck THEY are doctors, I'm not!). The ultrasound was painful, and I had a lot of pain in the weeks following it (increased and prolonged pain).
Having been told I have a "probable" heamangioma I've been told I'll have an MRI with contrast or buscopan on 21 jun.

Doing a search online for CKD patients, there is the potential for both contrast or buscopan to have a detrimental effect on the kidneys. Since I almost hit an efgr of 44 last september I clearly want to avoid any detrimental effects.
Of course no information was provided and no discussion of safety.

So on top of the consideration of what the 3 x 2 x 1cm mass is in my liver if it is not a heamangioma (lets face it, who does not have the word cancer pop up in their mind?); I also have to cope with the worry over the safety of the injected fluids used in the MRI and what they will do to me. And of course the inability to get a clear diagnosis if no injection is used.

Then of course as posted recently, my blood pressure and pulse pressure and heart rate are all pretty low. Apparently with lack of pulse pressure the kidneys are first impacted.
I had a bp reading of 90 / 61, with a heart rate of 48 one morning this week!

Throw in depression, ectopic heartbeat, feeling unwell, cholesterol and 24/7 pulsatile tinnitus. Yeah, how alone and unsupported and stressed can anyone get? Gotta be honest, can't take much more, it's a good job my pitch black sense of humour rarely dies.

Ehhh, sorry for the rant 🙄

 

[snowball12]

Hello folks

I was chatting to a new member who said they were feeling quite isolated because they are trying to balance diabetes and spondylosis.

One of the challenges they face was balancing the needs of more than one long-term healthcare condition. And it struck me that we have quite a few members who continually have to balance the needs of their diabetes alongside something else, whether that’s something dietary like IBS or Crohn’s, something autoimmune like Addison’s or RA, a mental health condition, Parkinson’s, chronic fatigue, nerve damage, kidney problems or something else entirely.

Do you live with multiple conditions? How do you find they interact? Do the needs of one make managing the other harder? Do you have any tips or suggestions? Or simply want to let off steam about the frustrations of it all?

Great question, I suffer with IBS, Clinical Depression and General Anxiety Disorder. These interact all the time unfortunately. IBS rules out a lot of healthy food. Fruit is the worst, I can only tolerate blueberries but not every day. Veg is limited by myself not liking and IBS not tolerating them. Same goes for nuts and seeds. I even have to remove the seeds from tomatoes. Anxiety raises my blood sugars!! GP doesn't understand and I have given up on any help with my Mental Health!!
Sorry to rant, I bet you are sorry you asked now 🙂

 

[AJLang]

I can add to this list....and also add to it the depression it causes because it makes me so reliant upon my other half even though I'm only 55. Type 1 diabetes (53 years) gastroparesis (14 years), supaventricular (sp) tachycardia, Chronic Fatigue Syndrome (12 years), glaucoma damaging both eyes (25 years), facet joint arthropathy, silent migraines diagnosed by neurologist - no headaches but a range of neurological issues, wheelchair necessary when I go out, IBS, left eye badly affected by previous hemi retinal vein occlusion which has caused severe vision loss in that eye due to loads of laser and damaged macular, chronic low sodium which GP is concerned about, hearing aid for both ears, arthritis in hip for at least 12 years. No medical professional including physios and GPs ever join up the dots at individual appointments even when I tell them. I'm also on 16 different medications which cause problems if I need others, including cause the low sodium.

 

[snowball12]

I think this is the biggest problem with healthcare providers, it's unforgivable since it's all right there on the computer screen these days. The other problem for me is the inability to talk to anyone regarding interconnected problems.

I had an ultrasound on my liver. I had self-diagnosed and told the doctor (who I knew would listen) that I thought the pain I'd told doctors about since 2021 was a liver problem (I'd previously mistakenly spoken of it in connection to my lungs .. but heck THEY are doctors, I'm not!). The ultrasound was painful, and I had a lot of pain in the weeks following it (increased and prolonged pain).
Having been told I have a "probable" heamangioma I've been told I'll have an MRI with contrast or buscopan on 21 jun.

Doing a search online for CKD patients, there is the potential for both contrast or buscopan to have a detrimental effect on the kidneys. Since I almost hit an efgr of 44 last september I clearly want to avoid any detrimental effects.
Of course no information was provided and no discussion of safety.

So on top of the consideration of what the 3 x 2 x 1cm mass is in my liver if it is not a heamangioma (lets face it, who does not have the word cancer pop up in their mind?); I also have to cope with the worry over the safety of the injected fluids used in the MRI and what they will do to me. And of course the inability to get a clear diagnosis if no injection is used.

Then of course as posted recently, my blood pressure and pulse pressure and heart rate are all pretty low. Apparently with lack of pulse pressure the kidneys are first impacted.
I had a bp reading of 90 / 61, with a heart rate of 48 one morning this week!

Throw in depression, ectopic heartbeat, feeling unwell, cholesterol and 24/7 pulsatile tinnitus. Yeah, how alone and unsupported and stressed can anyone get? Gotta be honest, can't take much more, it's a good job my pitch black sense of humour rarely dies.

Ehhh, sorry for the rant 🙄

You poor thing, I have always said without my sense of humour and my best friend I wouldn't be here

 

[AJLang]

Having said that when the effects of them, including depression, aren't having a grip then I try to make the most of life. At the moment my partner is on an unpaid sabbatical so this week we've been to Blenheim Palace, out for an ice cream, on the Harry Potter Tour and the local museum to see a Vivienne Westwood exhibition and the art gallery - and that's just since Monday. There are other week s when I can't do much at all, but I try to make the most of things when I can xx.

 

[Wendal]

Yep a great question and my tuppence worth.
Having multiple co morbidity situations is becoming much more widespread both as a result of age and also having conditions such as diabetes which can in itself further contribute to or be a consequence of other conditions.
Also of course we can have multiple health conditions sometimes interrelated as certain bodily systems such as the RAAS system affect more than one major organ and sometimes totally unrelated.
As Roland says if these conditions are not contained within one medical discipline they are often not optimally managed as Consultants will often act on a way that is conflict with each other even if not intentional so a holistic approach would be very beneficial.
I have not touched on the whole issue of how mental health can impact on or be impacted on by multi faceted health conditions and that is again a very important consideration.
To me the best way forward is to try and manage these as optimally as possible so if you can get one of these stable and like Roland my pancreatic situation is more or less under control with the Creon then you try and do the same for say the diabetes with the insulin.
You need a multi modal approach to managing these conditions of diet/ exercise and medication but I am not saying it is easy as it is not and there will be many challenges along the way but good luck with all of your efforts.

 

[Proud to be erratic]

This afternoon, I happened to be in the waiting room of our local Medical Centre and noticed prominent signs dictating " Only one ailment per Consultation". It is very clear that a holistic approach is not in the vocabulary of our Medical Centre.

 

[s'nic]

" Only one ailment per Consultation". It is very clear that a holistic approach is not in the vocabulary of our Medical Centre.

Same with mine, but the GP I have an appointment with next thursday will discuss more than one, and also will listen as well (it was her I pitched my 'I have a liver problem' to). I plan to discuss the upcoming MRI scan, increased pain since the ultrasound, and the falling BP. I may even try squeeze in a few more things.

Oh yeah on top of the other stuff listed I've had arthritis in the base of my thumbs since high school (now in knees and shoulders), and was diagnosed with General Anxiety Disorder. The GAD is primarily triggered by stress, and i find my worse cause of stress is people. Shutting the front door and leaving the world outside to it's own devices is very beneficial, tho on returning after going out I find myself doing a OCD type thing of checking / rechecking I have locked the door (I even check and re-check the back door which only goes to the patio. I really annoy myself doing that door checking thing 😡

 

[Leadinglights]

I'm sure a correct diagnosis would be made much more quickly if people were allowed to discuss their symptoms in full as so many conditions are interlinked.

 

[snowball12]

Same with mine, but the GP I have an appointment with next thursday will discuss more than one, and also will listen as well (it was her I pitched my 'I have a liver problem' to). I plan to discuss the upcoming MRI scan, increased pain since the ultrasound, and the falling BP. I may even try squeeze in a few more things.

Oh yeah on top of the other stuff listed I've had arthritis in the base of my thumbs since high school (now in knees and shoulders), and was diagnosed with General Anxiety Disorder. The GAD is primarily triggered by stress, and i find my worse cause of stress is people. Shutting the front door and leaving the world outside to it's own devices is very beneficial, tho on returning after going out I find myself doing a OCD type thing of checking / rechecking I have locked the door (I even check and re-check the back door which only goes to the patio. I really annoy myself doing that door checking thing 😡

I agree with you, people stress me out and that triggers my anxiety attacks. I don't go out much, only to friends homes and to my son's house. The arrival of my gorgeous granddaughters has helped a lot though. I get annoyed with myself too but after 36 years of suffering I guess this is my life now

 

[Cheyne]

Hello folks

I was chatting to a new member who said they were feeling quite isolated because they are trying to balance diabetes and spondylosis.

One of the challenges they face was balancing the needs of more than one long-term healthcare condition. And it struck me that we have quite a few members who continually have to balance the needs of their diabetes alongside something else, whether that’s something dietary like IBS or Crohn’s, something autoimmune like Addison’s or RA, a mental health condition, Parkinson’s, chronic fatigue, nerve damage, kidney problems or something else entirely.

Do you live with multiple conditions? How do you find they interact? Do the needs of one make managing the other harder? Do you have any tips or suggestions? Or simply want to let off steam about the frustrations of it all?

Hi,
I have autonomic polyneuropathy, T2, high blood pressure, high cholesterol, CKD and fill of osteoarthritis, they're not too bad to deal with, mostly. But throw in IBS with the neuropathy and the amount and type of foods I'm able to eat/tolerate are very few and in little amounts. This limits what can be done for any of the other health issues and is also limiting what meds I'm able to tolerate. Currently surviving on 2 spices of bread per day and copious amounts of tea. I'm 3 months into this wonderful diet and am not planning on seeing next summer.
The biggest problem I have is not being able to find a Dr that can handle multiple health issues in one person. GP's are just a waste of time, as their title suggest they are just general practitioners, not enough knowledge to do more than referrals to individual specialists who don't seem able to comprehend anything outside their chosen sphere of speciality. It takes me about a full 12 months to go from specialist to specialist to specialist etc and back again to the first specialist with none willing to cross their specialist boundaries, if only they would consult each other. End result, nothing is accomplished but lots of things are ruled out and occasionally some ideas are just plain wrong. They all seem to think because they advise for me to do this and that, that it is the fix, not bothering to consider the ramifications on/to me.
I'm down to the last blood pressure med which so far is helping but the side effect is headaches and it is known to damage my already failing kidneys. Rejected over 35 blood pressure and T2 meds. Should I feel like crap on meds or should I have some comfort without meds no matter how short this could be, that is my dilemma.
Cheers

 

[DianeD]

After 40 years of debilitating fatigue due to not responding to thyroid meds T4 and being told I had mental problems, I finally developed serious depression. Although I now get T3 my gp admits she doesn't understand how to monitor this and insists I come off them. I refuse vociferously and she now won't consider treating me for anything unless I give them up. Had to go through the menopause without any help. Now with type 1. Endo says he thinks my immune system is attacking my adrenal gland (not doing anything about it) I had a recurring eye issue and it turns out my immune system is also attacking my corneas, significant thinning, he then asked about my hearing, I have tinnitus and vertigo, he said that was also connected to the immune attack and I need to have steroids (and hearing aids) to suppress it but would hand that over to the diabetes endocrinologist. I have zero faith in anything being done by anyone but the eye team. I feel alone, scared and overwhelmed with it all. Depression is stalking me.

 

[Proud to be erratic]

@DianeD, WOW! I couldn't decide if your post warranted a Care, Love or Oh No emoji. Whichever is most appropriate please take that as a given start point! I decided Love can be interpreted as a gesture of warmth and care.

I can't offer any wisdom or insight into any of the medical content of your post, but I want to say that you aren't completely alone. Sharing your concerns in this anonymous public forum has got to be a tiny help; a problem shared is a big step towards a problem solved.

Being scared is very normal; fear is an infectious thing and knowledge helps dispel fear. You have more knowledge than many others about your ailments and I know from your post you have sufficient eloquence to highlight them as concerns. Could you steel yourself to cut and paste your narrative here to s hare with each of the Health Care Professionals challenging them to help you navigate a path forward? Challenging them to offer a holistic route?

Being overwhelmed initially is also not surprising. But you have expressed your concerns in bite sized bits and that alone ought to tone down the overwhelmingness (if there is such a word). Action, or reaction, can quickly fend off depression - a state of mind that feeds on inaction.

Meanwhile I hope Goodwood and Southwick today at least provide you with great distractions in the interim. I've been to Goodwood once, when no racing was happening (but still horoughly enjoyed that visit) and never heard of Southwick - so I've learnt something new today. Thank you.

 

[eggyg]

As @Proud to be erratic mentioned, becoming Type 3c comes immediately with added extras. No spleen for one for me as that was removed along with 2/3rds of my pancreas, so immune system compromised. No digestive enzymes produced so pooing through the eye of a needle one minute and being constipated the next is the norm until you successfully negotiate the Creon doses ( after almost 17 years the Creon is still winning that battle). Then you get the later additions, bowel adhesions caused by internal scarring after two major operations. It’s all great fun…NOT! Low carb for the diabetes, but can’t eat nuts, seeds, limited fibre and certain fruit or veg, for example tomatoes and peppers ( because of the seeds and skins) because of the permanent partially blocked small intestines. Can’t eat too much fatty food because of the non existent digestive enzymes ( especially if you’re away from the comfort of your own loo!) And the piéce de resistance is the delightfully named Gastric Dumping Syndrome, this is another side effect of major gastric surgery. Large meals to be avoided, especially if rich or fatty. Basically my stomach empties very, very quickly and I pass out/vomit/soil myself, sometimes all three! I have learnt to deal with this issue and haven’t had a “turn” ( as my family call them) for quite a while, thank goodness!

In the last two years because I’ve a serious bloating problem, I’ve been sent for an internal scan on my ovaries incase of cancer, it wasn’t, a colonoscopy ( where incidentally they discovered I had diverticulitis and am supposed to take in more fibre, see above to see why I can’t do that), I’ve seen an upper GI consultant who said I needed to see a lower GI consultant or colorectal surgeon, I saw him too who said I should see an upper GI consultant! I’ve had a phone appointment with a gastroenterologist who told me all I had to do was to take more Creon. Great I thought, but as other Creonistas know there is a huge shortage of Creon internationally and it’s looking like it won’t be resolved before 2026! I couldn’t get any last time I put my prescription in, so I’m reducing my Creon to make it last. The latest advice is eat small meals of bland food, and use as little Creon as you can get away with! I feel like I’m spinning plates everyday with all my extra medical issues, the diabetes on the other hand is a doodle to deal with! Luckily, I’m a very strong ( read stubborn) woman and I just get on with it because the NHS isn’t helping at the moment. Joined up thinking isn’t in their manifesto!

All in all it sounds grim, but a determined nature and my warped sense of humour see me through, ‘ cos no one else is willing or able!

 

[Wendal]

Again Diane/Cheyne so sorry to hear about your multiple issues and am sure as Roland has eloquently expressed you would benefit from a holistic approach or simply one person taking charge of your situation and trying to “ optimise” your situation as best they can.
I don’t mean that to diminish the seriousness of any of the multiple health concerns you have but only to try and tackle/ prioritise them in a more considered way rather than trying to deal with them with different departments on a single focused basis.
The best person in my experience to do this is having a particular experienced and wiling GP who has the desire to try and manage your multiple issues with a strategic view.
They will not have the ability to do it themselves but they can provide a pathway by trying to get the issues focused on in a structured way.
The problems we all face are time pressures of getting appointments with the same person and of course then getting the follow up appointments in a relevant manner.
It is not easy and maybe impossible but the diagnostic nature of high the medical profession works and the specialist areas do not lend themselves to the holistic approach many of you require.
If you then overlay anxiety/depression or other mental health issues on top of these conditions it can easily create a desperate situation where you are completely overwhelmed and can lead to a further downward spiral.
I do understand how difficult this is but it is important to try and seek good advice or find ways of managing these varying conditions as best you can and that is where forums like this can really help.
By providing support in knowing you are not alone and also to hopefully gain comfort and knowledge in how many others care about you and possibly can help with informed help gained by experience and knowledge.

 

[MarkyMark1]

Hello Mike,
thanks so much for your understanding and getting the ball rolling for me.
I'd also like to say a big thanks too for everyone that have responded with your experiences.
I am seen by several outpatient clinics, all at the same hospital but as far as any joined-up, wholistic approach to my care they might as well be on planet Mars! Absolutely no communication between them.
To hear that others face the similar problems is strangely reassuring for me.
I'm in the process of moving house from London to Suffolk and am deliberating whether to transfer my hospital to one which will be more local to me once the move is made. I've been seen by Kings College Hospital (which is one of the countries leading teaching hospitals) for over 30 years now and I'm feeling kind of loyal to them, despite my concerns I raised earlier in this message.
Thanks everybody
Hope you all have a great weekend
Mark

 

[Lucyr]

ME/CFS and autism both interact with diabetes I find.

ME/CFS means I have extreme fatigue and permanently feel like I have the flu to varying extents. Feeling like you have the flu for 2.5 years straight definitely makes it hard to exercise, and even to cook, so managing my weight has been extremely hard. I’m keeping it even now but would like to lose some more.

Autism makes interacting with medical professionals hard and has definitely meant I was misdiagnosed for the first 15 years as a standard t2. Also means I have high levels of anxiety and difficulty trying new foods, so makes change of diet very hard.

 

[s'nic]

ME/CFS means I have extreme fatigue and permanently feel like I have the flu to varying extents. Feeling like you have the flu for 2.5 years straight definitely makes it hard to exercise, and even to cook, so managing my weight has been extremely hard. I’m keeping it even now but would like to lose some more.

I can totally relate to this as I have battled fatigue and chest discomfort / breathlessness since march 2020.

I don't think the average GP even comprehends how debilitated this leaves us, or how we have to choose how to spend our energy. Do we cook dinner, or vacuum the sitting room? 🙄
I was gobsmacked when one GP (a guy) actually asked me what I did all day. It left me feeling like he thought maybe I was just being lazy 😡