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NHS won't help

S

Sharra

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6
I wonder if anyone can help me.
I recently tried alogliptin on top of my metformin, but had to stop as it pushed my heart rate up.
I spoke to DN yesterday and she just says there's nothing else she can give me.
I have hba1c of 50, but see numbers up to 10- 12 all morning despite eating keto. (for about 7 hrs).

I'm really not happy about numbers this high and they make me feel ill. Her response was "if you weren't testing you wouldn't know".

I think I need to find a private Dr who is happy to help me achieve normal blood sugar. Ideally someone who thinks like Dr Bernstein. Can anyone suggest someone or signpost me how to go about it please?

Many thanks
 
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Your last paragraph, yes, I suggest you need a new doctor / DN.

When you're conscious of your numbers and are trying to manage your condition, to have someone say, "if you weren't testing you wouldn't know". is just about the most ludicrous, morale-sapping thing I have heard.

Keep at it and good luck.
 
An hba1c is the equivalent of having bgl of 8.1 consistently. So either these high morning long readings are a new thing or there’s so much lower levels the rest of the day.

I agree with you that ignorance is not the same as solving the issue. Before you go private (who might not give you anymore answers) let’s try and see if anyone here can help. Between us there’s an awful lot of experience and real life solutions that might solve your issues. If they don’t then try and see another DN because there are a lot more than just those two medications. Then thinking about spending the money.

Looking for clues here that might help identify what’s happening - Has anything changed since the last hb1ac? (is the change since dropping alogliptan or was this happening regardless) How long have you been keto and how are you measuring bgl? What are the levels on rising and what do you eat in the mornings (maybe there’s some sneaky carbs hiding)?
 
Two points. The alogliptin works by boosting two emzymes that control insulin use and production. It works by preventing the breakdown and excretion of GLP1 and GLI hormones and increases the Glucagon in the blood. Now GLP1 is the signal to the beta cells to pump insulin into the blood, but glucgon is the signal to the liver to dump glucose, so to have both of these occur at the same time is strange since normally they work in opposition to each other. I found its bigger brother Sitagliptin did nothing for me at all. If we suppose that it does what is claimed and increases insulin, then if you have high insulin resistance, then that is not going to acheive much. The liver dump from the extra g;ucagon may be increasing glucose levels so perhaps that med is not the best choice for you.

The second point I make is that since 2009 the guidelines for T2 diabetics changed by raising the HbA1c target from 48 to 53 for elderly people and anyone taking a glucose lowering med (apart from Metformin). So that (presumably) is why the DN says your levels are fine. I am getting the same spiel from my GP with my current HbA1c of 46. Its too low in his opinion and therefore harmful I think his POV is harmful, so we are at stalemate.
 
Thanks for the replies.
More info, the 50 hba1c was before the Alogliptin, the alogliptin brought the morning spikes down to around 9, and I was seeing down to 6 in the afternoon. It was only because I've been wearing a Libre for a few months and could prove those higher numbers that the DN gave me the alogliptin,
Since I stopped it 2 weeks ago it's crept back up.
The DN initially agreed that sulphonureas weren't a good idea as I eat keto. And the SGLT2 wouldn't be good as I have bladder issues, I had to really push to get the gliptin.

I've been diagnosed 13 years and have eaten keto since diagnosis. Managed 7 years no meds, hba1c of 38. Then developed chronic illnesses, cant exercise and my numbers have steadily got worse. I'm on max dose metformin.

I'm pretty sure its nothing I'm eating as , I have things like cheese omelette, ground almond mug cake, cream cheese pancakes etc for breakfast.
I asked for a C Peptide test, but was told it was pointless, My TG:HDL ratio is 1.6 , which if I understand correctly means my insulin resistance isn't super high. (I've only just read about this though so I may be wrong). So I wonder if I'm not producing enough insulin. Taking until 12pm for my numbers to start coming down in the morning also makes me wonder this, although maybe there's another reason im not aware of.

My plan for the time being is to restart Alpha Lipoic acid, Start Berberine and pretty much do carnivore diet as
much as possible. But that is expensive and difficult for me to maintain long term.
It makes me so angry that we're told the NHS numbers are ok, when we know they put us at risk of complications.

Below is a screenshot of my daily patterns. Any help/suggestions welcomed :)


Screenshot_20230419-110525.jpg
 
ok I see how difficult this is as there’s nothing glaringly obvious to me either.

This seems like a dawn phenomenon type response. Am I right thinking you do eat breakfast? I ask as I continue to rise most mornings unless I put the brakes on it with a non carb small breakfast. Eggs cheese Etc. fasting can be counterproductive in limiting this reaction

sglt 2 are contraindicated on a keto diet too because of an increased risk of euDKA, independent of bladder issues. The gliptan works by increasing your own production of insulin and limiting glucose dumps.

I read that ratio are predictive >1.65 in women >2.75 in men. Are you make or female? If female you’re close but not over.

It’s crazy they won’t measure your insulin production as it’s very much not pointless. If you are producing less than normal then no further dietary changes are going change that, especially considering your very low demands already. If over producing it means IR is still the issue and further dietary efforts may yield more results. Adding insulin to an over producer manages blood glucose short term but adds to the underlying issue of IR. The testing used to be very expensive but it’s a lot less so now I understand. Is it worth asking someone else, trying again at your practice before paying privately for it?

Lastly that graph doesn’t look that much like a 50mmol hb1ac to me (A fair amount over 8 not so much under it) What does the libre stated your estimate is? Libre aren’t perfect and can over or under read (some people find one way consistently others find it erratic). Do you check readings against a meter ever?
 
HSSS said:
ok I see how difficult this is as there’s nothing glaringly obvious to me either.

This seems like a dawn phenomenon type response. Am I right thinking you do eat breakfast? I ask as I continue to rise most mornings unless I put the brakes on it with a non carb small breakfast. Eggs cheese Etc. fasting can be counterproductive in limiting this reaction

sglt 2 are contraindicated on a keto diet too because of an increased risk of euDKA, independent of bladder issues. The gliptan works by increasing your own production of insulin and limiting glucose dumps.

I read that ratio are predictive >1.65 in women >2.75 in men. Are you make or female? If female you’re close but not over.

It’s crazy they won’t measure your insulin production as it’s very much not pointless. If you are producing less than normal then no further dietary changes are going change that, especially considering your very low demands already. If over producing it means IR is still the issue and further dietary efforts may yield more results. Adding insulin to an over producer manages blood glucose short term but adds to the underlying issue of IR. The testing used to be very expensive but it’s a lot less so now I understand. Is it worth asking someone else, trying again at your practice before paying privately for it?

Lastly that graph doesn’t look that much like a 50mmol hb1ac to me (A fair amount over 8 not so much under it) What does the libre stated your estimate is? Libre aren’t perfect and can over or under read (some people find one way consistently others find it erratic). Do you check readings against a meter ever?
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I eat breakfast usually an hour or so after getting up. I could try eating immediately.
I'm female, so yes I think you're right, I'm not over in the ratios.
I'll try to push for a c-peptide when I speak to them again, but she was adamant I can't have one. I think I'll have to get it done privately

When I had the 50 hba1c , libre was predicting 55. I occasionally check against fingerpricks, Libre is usually the same ish, but sometimes a bit higher. Like other people though, I think 50 is too high, even if the Libre is reading high.
 
I'm fuming for you! What kind of help is, "If you weren't checking, you wouldn't know".

My long term diabetes nurse left my GP practice about 6 years ago, and there was no one to replace her. No, I couldn't believe it either. I asked my GP practice how on earth they were going to monitor and help me control my diabetes. They simply didn't know, so I asked to be transferred to the community diabetes team.

They were absolutely brilliant for me. I would suggest you look up diabetes care in your area and see what options are available to you. It was the community diabetes team that got me a trial of the Libra 2 glucose monitor, which was especially helpful when compensating for all the chemotherapy drugs I was, and still am taking.

You really shouldn't have this kind of issue finding effective diabetes care. All the best.
 
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