Need a rant and just plain scared!

Neo88

Active Member
Messages
41
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Hi everyone,

Apologies for the rant I just need to get things off my chest.

Tomorrow I have an appointment with a local hospital diabetic nurse (having been referred by my medical centres diabetic nurse). Hopefully this will lead to me finally having the antibody test to determine if I am Type 1.5. Right now I am terrified - fear of the unknown?!

I have to wait until October for appointments with the nephrology consultant, due to high creatine levels but "normal functioning" kidney results. I am also waiting for a follow up appointment with the rheumatology consultant due to years of cracking/painful joints where I should receive blood and x ray results - although I assume nothing significant has been found as I have not heard anything from them since my first consultation.

Since being diagnosed I have significantly cut my carb intake, I am taking 2x 500mg Metformin SR per day, as standard Metformin gave me stomach issues! On testing my glucose my ranges appear continue to vary, 3.5-5ish overnight fasting. and anything between 5's-10's 2 hours after eating. I am immensely frustrated as it appears that my next HBA1C test results (also due in October) will be pretty much the same as they were before I started the diet and medication! My weight at least seems to have currently stabilised at around 42-44kgs (6 1/2 stone thereabouts, I used to be 8-81/2 late last year/early this year). I do not want to lose anymore, as I fear I am losing muscle. I work with animals in a veterinary rehabilitation setting, so having a certain amount of strength and core control is essential and I am sick of feeling 'weak', 'tired' and lacking in energy most of the time. I am worried that if this continues, it may begin to affect my ability to do my job, which is heart breaking to me. Also, when I was first diagnosed, my doctor neglected to tell me that my cholesterol was high (triglycerides 5.7) so I am also in a bit of turmoil as to what to eat, as lchf may not do my cholesterol any good.

I know no one here can diagnose anything, and I will just have to wait and see what is happening as the results come in. In terms of overall glucose levels, they seem to be on the lower side of the diabetic scale, so why am I having these seemingly associated complications already! I went from being pre-diabetic to diabetic in a couple of months!!!

My work colleagues have been fantastic and supportive, my friends have varied in their reactions from supportive to down right dismissive. I suppose it is difficult for them to try and relate when they do not have diabetes, and do not live inside my head :)

So far emotionally I am veering about from "yes, I can do this" to being on the verge of tears and angry at the world which isn't that helpful to anyone!

Apologies for rambling and thank you for reading.
Neo88
 

jack412

Expert
Messages
5,618
Type of diabetes
Type 2
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Tablets (oral)
It's understandable that you are scared and you only need to read a couple of threads to see you are no orphan there. You may feel better once it is sorted out. I know I did when all the tests were done and I had an outcome.

your BG is very good, what were your readings before?
have you dropped the weight since low carbing? a way of asking you if you are getting enough fat with the Low Carb High Fat diet. think of carbs and fats like a seesaw, as one comes down the other goes up. to get your daily calories.
A lot of people find that their triglyceride goes down and their HDL goes up with LCHF, LDL can go up or down
 
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Neo88

Active Member
Messages
41
Type of diabetes
Type 2
Treatment type
Tablets (oral)
They have stayed around the same as far as I am aware. I was diagnosed because hbac1 went from 48 to 51 to 58 very quickly and because of this issue of the creatine which may indicate diabetic kidney problems. Still rather in the dark really.
 

Scouser58

Well-Known Member
Messages
400
Type of diabetes
Type 2
Treatment type
Non-insulin injectable medication (incretin mimetics)
Hello Neo88, firstly calm down and relax, you are getting yourself into a spin. You have lots of questions and not getting any answers, from anyone.

Ask to be refered to a Diabetic Specialist Nurse, these nurses now masses about the condition and can give you all the answers that you need, and give the advice and direction that you need for you to get in control of the condition.These nurses will see you for a number of appointments, to guide you through the process of gaining control and also they can advise on the things, blood sugar testing and what the results can mean for you. They will also recomend any referal to a hospital specialist if this is needed, and they can give you any helpful booklets that they feel will help you.

Ask you practise diabetic nurse if you have had all the necessary blood tests to give you a full picture of all the bodies organs/effects, they can read results and give you guidence and support when you need it, and as you already know us lot here on the forum will be at hand to read you rants, and read your concerns and try and be as helpful as possible, so as corporal jones said so well 'dont panic Neo88' ttfn
 
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jack412

Expert
Messages
5,618
Type of diabetes
Type 2
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Tablets (oral)
They have stayed around the same as far as I am aware. I was diagnosed because hbac1 went from 48 to 51 to 58 very quickly and because of this issue of the creatine which may indicate diabetic kidney problems. Still rather in the dark really.
7.5% in the old money, so it wasn't ridiculously high and going by the numbers you posted it has seemed to have settled down to normal levels for the time being.
They may do an A1c blood test, as well as checking for T1.5 when you see the hospital nurse today.
Best of luck and I hope it goes smoothly for you. I look forward to reading how it went
cheers
 

Scandichic

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3,708
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Hi everyone,

Apologies for the rant I just need to get things off my chest.

Tomorrow I have an appointment with a local hospital diabetic nurse (having been referred by my medical centres diabetic nurse). Hopefully this will lead to me finally having the antibody test to determine if I am Type 1.5. Right now I am terrified - fear of the unknown?!

I have to wait until October for appointments with the nephrology consultant, due to high creatine levels but "normal functioning" kidney results. I am also waiting for a follow up appointment with the rheumatology consultant due to years of cracking/painful joints where I should receive blood and x ray results - although I assume nothing significant has been found as I have not heard anything from them since my first consultation.

Since being diagnosed I have significantly cut my carb intake, I am taking 2x 500mg Metformin SR per day, as standard Metformin gave me stomach issues! On testing my glucose my ranges appear continue to vary, 3.5-5ish overnight fasting. and anything between 5's-10's 2 hours after eating. I am immensely frustrated as it appears that my next HBA1C test results (also due in October) will be pretty much the same as they were before I started the diet and medication! My weight at least seems to have currently stabilised at around 42-44kgs (6 1/2 stone thereabouts, I used to be 8-81/2 late last year/early this year). I do not want to lose anymore, as I fear I am losing muscle. I work with animals in a veterinary rehabilitation setting, so having a certain amount of strength and core control is essential and I am sick of feeling 'weak', 'tired' and lacking in energy most of the time. I am worried that if this continues, it may begin to affect my ability to do my job, which is heart breaking to me. Also, when I was first diagnosed, my doctor neglected to tell me that my cholesterol was high (triglycerides 5.7) so I am also in a bit of turmoil as to what to eat, as lchf may not do my cholesterol any good.

I know no one here can diagnose anything, and I will just have to wait and see what is happening as the results come in. In terms of overall glucose levels, they seem to be on the lower side of the diabetic scale, so why am I having these seemingly associated complications already! I went from being pre-diabetic to diabetic in a couple of months!!!

My work colleagues have been fantastic and supportive, my friends have varied in their reactions from supportive to down right dismissive. I suppose it is difficult for them to try and relate when they do not have diabetes, and do not live inside my head :)

So far emotionally I am veering about from "yes, I can do this" to being on the verge of tears and angry at the world which isn't that helpful to anyone!

Apologies for rambling and thank you for reading.
Neo88
Hi there! It is sensible to want to be in control ASAP. It isn't a condition you can just ignore and you are right to be concerned and want to do something about it. I am T2 and was too fat. My weight is going down but I've still got a way to go. My understanding is that there are a couple of dietary approaches. The NHS will be obliged to recommend the eat well plate but there are plenty of T1s who follow the LCHF approach. @Spiker may be able to help here. @northernlass ?
Have a look at this site
https://www.dietdoctor.com/?s=Type+1&submit.x=-962&submit.y=-178
The guy who writes it is a Swedish doc, specialising in obesity and diabetes.
Ref the cholestrol. Mine is 7.3 HDL 1.3, LDL 6 triglycerides 0.61
Note my triglycerides. I follow this diet. My LDL is too high but my HDL is good and my triglycerides are fab!
Finally, I would speak to your doc and insist on GAD test. I think I have that right. This is the test which confirms T1 I think.apologies if I've made any mistakes.like I say, I'm T2. Good luck and keep posting.
 

Spiker

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4,685
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Hi Neo88

Was your original diagnosis T2 then? How long ago was that?

As you are feeling weak and tired, and losing weight, despite the Metformin, it may well be that you are actually T1 or T1.5 and need insulin. It's good that you have got the antibody test scheduled. Will you also be getting a C peptide test?

I would say, don't worry, as the doctors get more information about your specific circumstances, your situation will improve.
 

Spiker

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Oh and LCHF will not make the important cholesterol readings worse. Don't allow your doctor to treat you based on the unreliable measure of "total cholesterol". Insist on getting a full lipid profile including HDL / LDL ratio, triglycerides. These measures are more accurate and will improve on an LCHF diet.
 

Neo88

Active Member
Messages
41
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Thanks for your replies everyone.

@Spiker - this my first meeting with the clinic, so I am going to ask for the tests to be done. I was originally diagnosed as Type 2, my father and grandfather were diagnosed with T2 in their 60's (I am 26!). I was diagnosed around May this year.

I will stick with the LCHF diet, thank you for the link @Scandichic. I have already discovered that baking with almond flour causes delayed spiking 4 hours later into the 9's, although there was a teaspoon of honey in the recipe so I guess it could have been that.

Thank you @jack412, no my levels aren't extremely high (for which I am grateful) yes my weight is continuing to fluctuate between 42-45kgs, which in clothing terms appears to be a whole size.

Lol thank you @Scouser58 - I think it's the complete bafflement of my GP (and her willingness to just let me choose whether I wanted to go onto Metformin or not) and the GP practice nurse's reaction that has made me panic. I am glad I have been referred on because they admitted they didn't understand what was happening.

I'll post an update after my appointment later.

Neo88
 
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Spiker

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The 4 hr delayed spiking is probably the protein in the almond flour converting into glucose. This conversion only happens when you low carb. It also suggests you are T1. Glucose release from protein conversion is so slow that T2s don't normally report spiking from it (AFAIK).
 

Neo88

Active Member
Messages
41
Type of diabetes
Type 2
Treatment type
Tablets (oral)
The 4 hr delayed spiking is probably the protein in the almond flour converting into glucose. This conversion only happens when you low carb. It also suggests you are T1. Glucose release from protein conversion is so slow that T2s don't normally report spiking from it (AFAIK).

That's really interesting :)
 

Neo88

Active Member
Messages
41
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Update as promised;

The nurse is going to discuss with the consultant whether they feel a C Peptide test is appropriate at the moment and phone me later in the week with a decision. No mention of the GADA test, unless that is one and the same and I have confused myself. She agreed that I may have type 1.5 but that my symptoms are variable between type 1 and 2.

She has insisted I stop testing 2 hours post meal and purely focus on testing before I eat (how am I meant to know if a certain food has spiked me?!). She agreed that low carb is the way to go in terms of diet. No mention of the cholesterol.

She seemed to think my creatine levels would not be related to my diabetes as my levels are low but to just wait and see what the nephrologist says in October... she also advised that the nephrologist may insist I come off Metformin. She has said that if they start to rise to 15 then that may indicate diabetic related issues.

I have referred myself to the diabetic well being team - although I am not depressed, I am very confused and feel it would be helpful to try and discuss it with a professional at least once.

That's probably a little garbled as I have just got in. I will post again if I think of anything else after a cup of tea!

Neo88
 
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Spiker

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That sounds pretty good. Certainly could have been worse. They are considering the C peptide test, and they support you on low carb.
For a full diagnosis they need GAD as well as C peptide. But both are rarely done in the UK alas. The C peptide shows how much insulin is being produced still by your beta cells, the GAD shows the autoimmune activity against the beta cells. High C peptide and no GAD is typical of Type 2, pretty much diagnostic of it. Low/nil C peptide and high GAD is typical of T1. It does vary however depending on how much time has passed since the onset of the disease. Ie GAD will be low/nil and C peptide nil if all the beta cells died off decades earlier.
 
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Spiker

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LADA would be high GAD, but higher C peptide (= insulin production) than a T1, but still lower than a normal person or T2.

If they just do GAD and not C peptide it could diagnose you as a T1 when perhaps you are a T1.5 / LADA.
 

Neo88

Active Member
Messages
41
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Thanks Spiker, may try and find out how to get GAD done privately, as at the moment my levels don't appear to warrant an appointment with a consultant.
 

Spiker

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Ask about C peptide too, in case the GP blows you off on that.
 

Scouser58

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Messages
400
Type of diabetes
Type 2
Treatment type
Non-insulin injectable medication (incretin mimetics)
Hello Spiker, what a knowledgeable man you are, you have given me some very good information about proving the type condition, helpful to have in my book for future reference, thank you ttfn
Neo88, hello the information from Spiker is very full of good details to take to the gp/nurse/specialist to get to the bottom of the condition, keep letting us know, ttfn
 

Neo88

Active Member
Messages
41
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Just a quick update. The DN called today to say that the consultant does not think I need the C pepetide test as they feel at the moment my presentation is more T2 (reassuring me that there are thin, young people with T2 not T1.5!). She has said to let my GP know if my levels start to rise.

Not very sure what to make of it really.

Should I persue it and get tests done privately, or take their 'we'll just wait and see what happens'?!

Neo88
 

Spiker

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To be honest I was expecting they would give you that response. It's always easier for them to say "maybe, come back later" than to tell you No to your face, and have to explain why. :-(
 

Spiker

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Ok. If I were you this is what I would do:

- Keep testing at +2 hrs so you know what foods to avoid. This is excellent practice even if you are lucky and just T2

- Find out private costs for GADA and C Peptide and take whichever is cheapest. Either test will prove if you are T2 or not. You only need both tests if you are trying to determine if you are T1 vs T1.5 (or very advanced T2, which you're not).

Unfortunately your doctor is only going to give you a GADA or C Peptide test after waiting a long time, and you getting a lot worse. :-(