The next step - medications

[Alexandra100]

I am feeling scared at how fast my body is ageing

Me too! Feeling I am falling apart, as you vividly put it, is an uncomfortably accurate description of what has been happening to me. BUT I do think physical deterioration is not linear. Often, perhaps usually, we hit a bad patch, go palpably downhill, think omg if I go on like this I'll be in a wheel-chair soon. And then with luck things improve and stabilise at an acceptable level maybe for years. I am even hoping to claw my way some distance back up the hill and I do believe you can too.
As you say you have little appetite I'm not sure what bariatric surgery could do for you. If you are really not eating much and yet can't lose weight, I wonder how much might be due to fluid retention? Just a thought.
I have been reading your helpful posts for years now but I never realised you were in so much trouble yourself. Lots of hugs!

 

[lucylocket61]

Me too! Feeling I am falling apart, as you vividly put it, is an uncomfortably accurate description of what has been happening to me. BUT I do think physical deterioration is not linear. Often, perhaps usually, we hit a bad patch, go palpably downhill, think omg if I go on like this I'll be in a wheel-chair soon. And then with luck things improve and stabilise at an acceptable level maybe for years. I am even hoping to claw my way some distance back up the hill and I do believe you can too.
As you say you have little appetite I'm not sure what bariatric surgery could do for you. If you are really not eating much and yet can't lose weight, I wonder how much might be due to fluid retention? Just a thought.
I have been reading your helpful posts for years now but I never realised you were in so much trouble yourself. Lots of hugs!

The idea of bariatric surgery seems to be to remove or reduce my insulin resistance and stop my type 2 diabetes, which will then help my fatty liver - apparently. However, my liver damage was caused by surviving being accidently poisoned, which is when my unexplained weigh gain happened. I put on 6 stones in less than a year, then stopped gaining when the medics realised the medication was damaging my liver and poisoning my body, and stopped the meds, and my weigh has been the same ever since (20 years). There is no explanation so far on why my insulin resistance and output is so high, given how little I eat anyway. Its a mystery.

 

[Alexandra100]

The idea of bariatric surgery seems to be to remove or reduce my insulin resistance and stop my type 2 diabetes, which will then help my fatty liver - apparently. However, my liver damage was caused by surviving being accidently poisoned, which is when my unexplained weigh gain happened. I put on 6 stones in less than a year, then stopped gaining when the medics realised the medication was damaging my liver and poisoning my body, and stopped the meds, and my weigh has been the same ever since (20 years). There is no explanation so far on why my insulin resistance and output is so high, given how little I eat anyway. Its a mystery.

Good grief! How horrible!!!

 

[jonathan183]

The idea of bariatric surgery seems to be to remove or reduce my insulin resistance and stop my type 2 diabetes, which will then help my fatty liver - apparently. However, my liver damage was caused by surviving being accidently poisoned, which is when my unexplained weigh gain happened. I put on 6 stones in less than a year, then stopped gaining when the medics realised the medication was damaging my liver and poisoning my body, and stopped the meds, and my weigh has been the same ever since (20 years). There is no explanation so far on why my insulin resistance and output is so high, given how little I eat anyway. Its a mystery.

my guess would be sorting out the liver is probably the main thing to tackle ... I would have thought dietary manipulation could achieve more or less everything bariatric surgery can without the risk associated with surgery ... but will rely on your liver functioning correctly. I remember you mentioned some time ago sudden fall in blood glucose ... are you still suffering from this issue as well ? Unfortunately I think it might be quite complicated to establish the right medication to help

 

[Andydragon]

Thank you for this. I had been thinking that once I get onto the meds ladder, it's a one way trip. I hadn't thought that it could be temporary. This is a cheering point.

Well as I can attest, it can be reversed. Personally if I need meds then I’m not against them, but I can appreciate it is something that can feel a difficult step. Good luck in whatever decision you take. It is your decision, no matter how ogre like the nurses are

 

[lucylocket61]

my guess would be sorting out the liver is probably the main thing to tackle ... I would have thought dietary manipulation could achieve more or less everything bariatric surgery can without the risk associated with surgery ... but will rely on your liver functioning correctly. I remember you mentioned some time ago sudden fall in blood glucose ... are you still suffering from this issue as well ? Unfortunately I think it might be quite complicated to establish the right medication to help

Yes, I still get lows of 3 and under. I cant find a pattern yet, but am recording everything I can think of. Fortunately I havent fainted for quite a while now.

 

[jonathan183]

Sorry you are still having the issues ... I was wondering if evening primrose oil (possibly in combination with fish oil) might help but unfortunately can't locate any papers I could read the full text of or link to so could not work out if this helps the liver out or relies on it (possibly increasing load which might be counter productive) ... good luck with the appointment and hope you get things sorted soon

 

[Lamont D]

Yes, I still get lows of 3 and under. I cant find a pattern yet, but am recording everything I can think of. Fortunately I havent fainted for quite a while now.

Hi again, I did not know or remember this information.

I came on to back the Ozempic.
And I am not on or have ever taken Ozempic, but the success rate is really very good.
Especially to those who have changed their dietary intake to a low carb diet.

How do I know? My wife has T2, and before Ozempic, and of course her other health issues, she really struggled to get any control. But the Ozempic stabilised her blood levels.
Enough to improve her health and her life.

Hope you fat bit better today.
Merry Christmas.

 

[Daphne917]

@lucylocket61 sorry to read about your ongoing issues. Just a thought - are you eating enough to stop your metabolism from storing energy as 1200 cals is, as you say, quite low. Re the ACE inhibitors such as Ramoril I cannot take them either and now take Candasartan which keeps my BP under control with, as far as I can tell, no side effects.

 

[lucylocket61]

I am noticing a pattern.

Waking 8-ish
Before tea 10-12
2 hours after eating 6

I don't eat all day, only around 6pm. I might have a snack around 9pm too.

If I don't have a protein snack in the evening my blood sugar level is back up to 10-12 before bed. I feel no hunger at any time.

Any ideas what is going on? My very lows seem to follow a period of more than usual physical activity, but don't happen every time.

Thoughts about what questions to ask a medical person will also be useful. Thanks.

 

[Alexandra100]

I am noticing a pattern.

Waking 8-ish
Before tea 10-12
2 hours after eating 6

I don't eat all day, only around 6pm

I've no idea why, but you are by no means the first person to post about having their bg rise when they fast. This happened to me for a while, so that I took to stashing some cheese in the bathroom to eat as soon as I got out of bed. Mysteriously, after a while this stopped being necessary. I assumed that my pancreas interpreted fasting as an emergency and helpfully pumped out glucose, but that's just my guess. In your position, if I got my lowest bg 2 hours after eating, I'd experiment with eating little and often. Again, I imagine your lack of appetite may be due to your liver problems. But of course I don't know. Good luck!

 

[AndBreathe]

I am noticing a pattern.

Waking 8-ish
Before tea 10-12
2 hours after eating 6

I don't eat all day, only around 6pm. I might have a snack around 9pm too.

If I don't have a protein snack in the evening my blood sugar level is back up to 10-12 before bed. I feel no hunger at any time.

Any ideas what is going on? My very lows seem to follow a period of more than usual physical activity, but don't happen every time.

Thoughts about what questions to ask a medical person will also be useful. Thanks.

To be honest, Lucylocket, in your shoes, if my GP wasn't giving me a reason why your numbers are increasing, then I would ask for a referral to an Endo. He may refuse of course, but if he does I would definitely ask him to enquire on your behalf. Your GP has a direct route into all the major disciplines in secondary care, where they can enquire about trickier cases, or areas where they have little or no experience for guidance on how to move forward.

It can sometimes take a day or so for secondary care to respond (I think their back stop service level is something like 3 days), but secondary care will respond.

As I have said before, there's no shame or issue going onto meds. Meds needn't necessarily be forever. but I would say what is important is you are comfortable you are being adequately evaluated, prior to reaching for the electronic prescription pad.

 

[lucylocket61]

I have hesitated to bother a gp. I haven't ever seen one for my diabetes. However, I can see now that this needs proper investigation.

I also need to educate myself about fatty liver. I can't be an effective carer if I am unwell myself. The GP will have to make time for me. I feel strong enough, with all the support on here, to insist.

 

[Lamont D]

There comes a time and place to insist you need specialist care.
This is because of a GP not having specialist training and unaware of the symptoms when put together and very rarely know your medical history at all.
Once diagnosed through Hba1c and other tests, because of a change in lifestyle symptoms will obviously change but the underlying cause will still be there. So the adjustment and the steps patients have taken is good, but having achieved so much, the overall change is either really good and it works. Or the change doesn't work, then there is the change that isn't enough. Or in a few too much.
Most treatments and meds are designed to help with symptoms, but are never intended to cure the underlying cause. But that doesn't mean with the right help from an expert you can get healthier and be as healthy as possible.
Even some advice may not be right and only discussion with a specialist or a GP can progress your changes from time to time.
@lucylocket61 you will never know until you ask and insist on a referral. They should not deny you a referral, it is justifiable and a correct course of medical care.
We haven't got to that stage yet under Boris, so there is no wasting time.

Take care.

 

[AndBreathe]

I have hesitated to bother a gp. I haven't ever seen one for my diabetes. However, I can see now that this needs proper investigation.

I also need to educate myself about fatty liver. I can't be an effective carer if I am unwell myself. The GP will have to make time for me. I feel strong enough, with all the support on here, to insist.

Lucy, I've said it a million times before and will continue to say so until I'm blue in the face, but there has never, EVER been a time when it has been more important to be our own health advocates.

GPs are busy. GPs are tired. "Other people" have needs. None of that is untrue, but from time t time we have needs to, and our GPs are our gateway to specialist care.

As you so rightly say, you can't drink from an empty vessel.

 

[Andydragon]

Lucy, I've said it a million times before and will continue to say so until I'm blue in the face, but there has never, EVER been a time when it has been more important to be our own health advocates.

GPs are busy. GPs are tired. "Other people" have needs. None of that is untrue, but from time t time we have needs to, and our GPs are our gateway to specialist care.

As you so rightly say, you can't drink from an empty vessel.

Whilst I do agree that it is important to take your own health into your own hands, I also have to add that doctors are there to support and @lucylocket61 what you have described is hardly bothering them. I hope I am not the outlier but my doctors and nurses have been nothing but supportive when I have gone for advice/support. Having a good relationship with them has gone such a long way in my recent health improvements by enabling more often hba1c or referring me to have my heart rate checked etc.

Yes covid has impacted, but they haven’t stopped supporting

Honestly every doctor I have ever had has been as supportive.

Your health matters and it is easy to knock the NHS but it can be truly amazing too

 

[AndBreathe]

Whilst I do agree that it is important to take your own health into your own hands, I also have to add that doctors are there to support and @lucylocket61 what you have described is hardly bothering them. I hope I am not the outlier but my doctors and nurses have been nothing but supportive when I have gone for advice/support. Having a good relationship with them has gone such a long way in my recent health improvements by enabling more often hba1c or referring me to have my heart rate checked etc.

Yes covid has impacted, but they haven’t stopped supporting

Honestly every doctor I have ever had has been as supportive.

Your health matters and it is easy to knock the NHS but it can be truly amazing too

Andy, I fear you have misinterpreted my message, or I have written it very badly.

I wholeheartedly agree our GPs are there to look after us - ALL of us, not just "the others", but us. It is important we do what we can t educate ourselves, but we do need our GPs as a gateway to formal diagnostics and specialised care. Unfortunately, in my experience, once our conditions meander more than a little from the standard, described course of a given condition/disease/illness, our GPs can get a bit lost.

But, one thing I am very clear on is that we have to be strong in our requests, and to make such requests for help in expectation of help, not a quick prescription, and fobbed off to see how it goes for a few months.

 

[lucylocket61]

Whilst I do agree that it is important to take your own health into your own hands, I also have to add that doctors are there to support and @lucylocket61 what you have described is hardly bothering them. I hope I am not the outlier but my doctors and nurses have been nothing but supportive when I have gone for advice/support. Having a good relationship with them has gone such a long way in my recent health improvements by enabling more often hba1c or referring me to have my heart rate checked etc.

Yes covid has impacted, but they haven’t stopped supporting

Honestly every doctor I have ever had has been as supportive.

Your health matters and it is easy to knock the NHS but it can be truly amazing too

I am not knocking the NHS.

 

[Andydragon]

I am not knocking the NHS.

Apologies @lucylocket61 that was a generic comment, it wasn’t meant to be targeted at anyone and the same for @AndBreathe as I didn’t mean to say I thought you were

I I tended to support your comments but expanded ina way that appeared to suggest something different. My apologies if read in a way unintended. It’s one of the challenges of this medium at times