Improved HbA1c - Worsening Symptoms?

[Colin of Kent]

Hey guys. I've managed to improve my BG control hugely in the last nine months or so, and had my lowest ever HbA1c reading, which is great. I've experienced increased retinopathy, and I understand this is normal when control is tightened up significantly, and that it should be a short-term issue, but that in the long term the eyes will improve.

Now I'm experiencing neuropathy for the first time in my 28 years of diabetes, including permanent pins and needles in my right big toe, and a general increase in susceptibility to transient pins and needles.

What I'm wondering is, could this neuropathy be another short-term deterioration due to lower BG levels, like with the eyes? It's my understanding that the cells become accustomed to living in high glucose levels, and when these are reduced, they don't like it.

What's everyone's view on this?

 

[Member496333]

Exactly the same experience here. My retinopathy became far more serious as my glucose levels lowered. Ended up having bilateral laser treatment followed shortly after by macular edema which then led to anti-VEGF. Neuropathy in my feet also became crippling. You probably had numbness which was masking your neuropathy, and now the feeling is coming back.

For me it was a classic case of getting worse before it got better

 

[Colin of Kent]

Exactly the same experience here. My retinopathy became far more serious as my glucose levels lowered. Ended up having bilateral laser treatment followed shortly after by macular edema which then led to anti-VEGF. Neuropathy in my feet also became crippling. You probably had numbness which was masking your neuropathy, and now the feeling is coming back.

For me it was a classic case of getting worse before it got better

That's interesting. How long was it before things started getting better for you, and how bad was it before? I know we're all individuals, and your experience is bound to be different from mine, but I'm curious nonetheless.

I can't help wondering whether I should relax my diet for a while, to give my body a chance to 'catch up'?

 

[Member496333]

That's interesting. How long was it before things started getting better for you, and how bad was it before? I know we're all individuals, and your experience is bound to be different from mine, but I'm curious nonetheless.

I can't help wondering whether I should relax my diet for a while, to give my body a chance to 'catch up'?

The neuropathy got increasingly more painful in the first year after diagnosis. Went primal-keto at the beginning of the second year and the pain vanished in a matter of weeks.

The retinopathy initially cleared up in the first few months after diagnosis but then came back with a vengeance just before a started keto and really began to see my blood numbers plummet. Everything is mostly cleared up now. Unfortunately I still have slightly compromised acuity in my right eye, as there is a laser scar right in the centre of the macular. It’s only noticeable when I close my left eye, and may yet still improve. Time will tell.

If I could turn back the clock I wouldn’t do anything differently with my dietary strategy. The ophthalmologists all ageeed I was doing the right thing, and there was never a suggestion that I should consider raising my blood glucose, and I wouldn’t have done it anyway. The neuropathy was very often not far from hell, but I just fought through it and hoped it would pass. Thankfully, it did

 

[Brunneria]

Hi Colin,

Did you have a look at the Bernstein vid I posted in your other thread, talking about the rate of nerve healing, and how things often get worse (tingling and discomfort) before they get better?

It may be that you had some nerve damage that you were not previously aware of, which is now recovering. Although of course that is just speculation.
Of course, I am rooting for this being what is happening!

 

[Colin of Kent]

Hi Colin,

Did you have a look at the Bernstein vid I posted in your other thread, talking about the rate of nerve healing, and how things often get worse (tingling and discomfort) before they get better?

It may be that you had some nerve damage that you were not previously aware of, which is now recovering. Although of course that is just speculation.
Of course, I am rooting for this being what is happening!

Thanks, yes, I did watch a bit, although I confess not all of it. Dr B is a role model for us all, especially Type 1's, I feel. If he can come back from the extent of his complications, there's hope for us all!

 

[Caprock94]

That's interesting. How long was it before things started getting better for you, and how bad was it before? I know we're all individuals, and your experience is bound to be different from mine, but I'm curious nonetheless.

I can't help wondering whether I should relax my diet for a while, to give my body a chance to 'catch up'?

Have things improved? Hoping so!

 

[ickihun]

Hey guys. I've managed to improve my BG control hugely in the last nine months or so, and had my lowest ever HbA1c reading, which is great. I've experienced increased retinopathy, and I understand this is normal when control is tightened up significantly, and that it should be a short-term issue, but that in the long term the eyes will improve.

Now I'm experiencing neuropathy for the first time in my 28 years of diabetes, including permanent pins and needles in my right big toe, and a general increase in susceptibility to transient pins and needles.

What I'm wondering is, could this neuropathy be another short-term deterioration due to lower BG levels, like with the eyes? It's my understanding that the cells become accustomed to living in high glucose levels, and when these are reduced, they don't like it.

What's everyone's view on this?

Are you now on aspirin or a cholesterol med?
More insulin too?

 

[Colin of Kent]

Have things improved? Hoping so!

Thanks for asking. The retinopathy definitely turned a corner about six months ago. The last screening was three months later and showed no change, but I have another tomorrow, and I'm cautiously optimistic. My feet have yet to improve but thankfully haven't gotten any worse - I only have mild numbness in the toes, no real pain, and good sensation elsewhere.

Are you now on aspirin or a cholesterol med?
More insulin too?

Yes, and no. Aspirin 75mg daily, but I won't take a statin unless and until someone can show me compelling evidence to do so. My reasoning is as follows:

1. My cholesterol has decreased dramatically of its own accord, with the LDL dropping by about 50%, so I think why not see if it will continue to do so?
2. I know LDL is involved in tissue repair, and given there is a lot of that going on for me right now, it shouldn't be surprising that it's elevated.
3. I've had an NMR lipid profile done, which shows that my LDL is predominantly the large, buoyant type (pattern A). It also shows that my HDL is nice and high, and my triglycerides are low.
   
4. Statins work by upregulating the LDL receptors on the liver, but the small dense LDL particles (the atherogenic ones) don't bind to those receptors. So what ends up happening is that the healthy LDL are removed from circulation, leaving the harmful ones alone, so my ratio of healthy-to-unhealthy LDL would be worse than it is now.
5. The side effects of statins are well known, and I always prefer to avoid drugs if at all possible.

As to the insulin, I'm a Type 1, so no, I actually require much less insulin these days than I did, particularly when I'm exercising regularly, as it boosts my insulin sensitivity.

 

[Caprock94]

Thanks for asking. The retinopathy definitely turned a corner about six months ago. The last screening was three months later and showed no change, but I have another tomorrow, and I'm cautiously optimistic. My feet have yet to improve but thankfully haven't gotten any worse - I only have mild numbness in the toes, no real pain, and good sensation elsewhere.


Yes, and no. Aspirin 75mg daily, but I won't take a statin unless and until someone can show me compelling evidence to do so. My reasoning is as follows:

1. My cholesterol has decreased dramatically of its own accord, with the LDL dropping by about 50%, so I think why not see if it will continue to do so?
2. I know LDL is involved in tissue repair, and given there is a lot of that going on for me right now, it shouldn't be surprising that it's elevated.
3. I've had an NMR lipid profile done, which shows that my LDL is predominantly the large, buoyant type (pattern A). It also shows that my HDL is nice and high, and my triglycerides are low.
   
4. Statins work by upregulating the LDL receptors on the liver, but the small dense LDL particles (the atherogenic ones) don't bind to those receptors. So what ends up happening is that the healthy LDL are removed from circulation, leaving the harmful ones alone, so my ratio of healthy-to-unhealthy LDL would be worse than it is now.
5. The side effects of statins are well known, and I always prefer to avoid drugs if at all possible.

As to the insulin, I'm a Type 1, so no, I actually require much less insulin these days than I did, particularly when I'm exercising regularly, as it boosts my insulin sensitivity.

That sounds like great improvement to me! No pain! Hopefully the numbness will improve as time goes on with good control.