Confused about my doctors/consultants advice, am I type 1.5?

[mrbondsbody]

 

[Spiker]

I'm still calling that 'on the higher side'.

 

[Spiker]

By the way that's a very impressive Hba1C drop in 2 months - 72 to 48. You are definitely doing something right, probably everything right.

 

[Dillinger]

You can get ketone test strips for urine from Boots for about £5. If you are worried about your ketones rising why not get some of those and check your fasting levels for a few days?

Also, whilst I think what you are doing is excellent it might be worth eating a higher level of carbs to drop you out of nutritional ketosis for a few weeks to see whether you still have ketones which would imply that your insulin levels are dropping and/or are too low.

Hopefully that is not the case then you could just fat fast your way back to ketosis?

Best

Dililnger

 

[Spiker]

If she's been in nutritional ketosis for two months then urine ketone strips will be unreliable.

 

[mrbondsbody]

Hi mrbondsbody! I'm glad to see that several of the guys have mentioned MODY - it seems highly unlikely you are Type 2 - possible, but you do not have the main risk factors i.e. overweight, over 45, female with PCOS, of Asian origin and over 25 (obviously I don't know for sure you don't have this risk factor!). So, unlikely.

LADA would be the first thought - and the lack of antibodies do not actually rule that out (the presence of them would be a cause of diagnosis, but the absence doesn't rule it out). LADA is not hereditary although it is thought to have a genetic element, so your family history of diabetes would be largely a coincidence. I would say that although LADA is the most likely explanation, you do have the markers for the less common MODY - which is a whole set of different genetic forms of diabetes rather than a single condition. If you do have LADA, a VLCD will help with the most effective use of your remaining beta cells, but you will eventually progress to insulin, so you should test fairly frequently and make sure you insist on regular HbA1cs to make sure you don't end up very ill by failing to notice you have progressed beyond the point where you need insulin.

At your age i.e. an age where you have or might expect to one day have children, and with your family history of a non-progressing form of diabetes, the NHS is actually very sympathetic to funding MODY tests, because it is hereditary and you would want to know as soon as possible if you have passed the condition on to children (or might do one day). I think Exeter is the only place where tests for MODY are carried out, although that might have changed in the last few years.

Anyway, have a read of the Exeter MODY web site and if you think it's a possibility, ask your doctor about it - but be prepared that they'll know nothing about MODY and you might need to contact Exeter yourself to see what your options are for testing.

Nothing wrong with low-carb though whichever type of diabetes you have!

Smidge

Its probably too late as I am having a baby this year. I'll push to get tested when I next go to the hospital and keep testing my blood in the mean time.

 

[mrbondsbody]

Yes, that's the point, isn't it. Until and unless your blood sugars rise, only your diet will change, no?

I still wouldn't do it, though. It's VLCHF that is keeping your bloods at a safe normal level. That is great. And I don't see how reintroducing you to non-ketogenic carb levels and waiting to see if you develop v high BG and dangerous levels of ketones can possibly be responsible. If there's a good reason, It's a mystery to me.

If your BG eventually rises, then it will be clear that you do need insulin, ie that you're type 1. That you can catch by testing, and I think that's what you should do.

I don't know what to suggest about tests. Is it GAD you got a negative result on? Phoenix is your best guide here.

So just keep monitoring your BG and, if it begins to rise steadily, your ketones too. It's high BG though - over ? 11 ? - that will be your tripwire. And if your BG rises seriously, you'll be asking for insulin, won't you?

Thank goodness, with diabetes we can do a lot ourselves.

Lucy

I got a negative for GADD and islet cell antibodies
Not tested for C-peptide yet or MODY. Will push for these and report when I here more.

Good advice. Will still test myself in the meantime and keep alert if it starts increasing!

Love the response you get when you mention VLCD to nurses and doctors some can't believe I am going against their advice!

 

[mrbondsbody]

I'm also confused as to why your doc wants to reintroduce carbs and check for ketones. Have you had an HBa1c test done? The best bet would be her suggestion to do a C-peptide test. Until then LADA, MODY or T2 are all options. Or even straight T1.

The only thing I'm slightly concerned by is that your 2.5 ketone level is on the higher side for nutritional ketosis. That's a blood level and not a urine level right? Have the ketones be tested regularly or just the once, at your first presentation to the doc?

yep that's blood level, 1.5 hs after breakfast at the hospital. I can't seem to get my monitor to work with ketones.

I'll get the c-peptide test and mody done as soon as I go back to the hospital.

thx for all your help

 

[phoenix]

@Spiker
GAD is normally thought to be the most persistent but definitely some people are positive for some and not others

Islet-cell (IA2), anti-GAD65, and anti-insulin autoantibodies can be present in early type 1 but not type 2 DM. Measurements of IA2 autoantibodies within 6 months of diagnosis can help differentiate between type 1 and type 2 DM. These titers decrease after 6 months. Anti-GAD65 antibodies can be present at diagnosis of type 1 DM and are persistently positive over time

http://emedicine.medscape.com/article/117739-workup#a0756

(and once again genes may play a part in the ones most likely to show up "Although no exclusive associations between certain HLA alleles and autoimmunity to a particular autoantigen have been demonstrated, several studies have shown correlations between HLA alleles and DAAs, suggesting that the HLA genotype may have a modifying effect on the generation of autoantibodies targeting a specific autoantigen".)
Interestingly, my 23 and me test has shown that I have one copy of the risk haplotype that I've just read is more associated with IAAs and ICAs than GAD (DR4-DQ8) . I think I was told I was GAD positive at diagnosis,I did ask . (but that could be a language misunderstanding)
.http://diabetes.diabetesjournals.org/content/54/suppl_2/S52.full#ref-17

 

[Spiker]

I can't seem to get my monitor to work with ketones.

Only about two models of monitor work with blood ketone strips (obtained separately). One is the Glucomen LX. Is the other the One Touch Verio Pro??

 

[LucySW]

yep that's blood level, 1.5 hs after breakfast at the hospital. I can't seem to get my monitor to work with ketones.

I'll get the c-peptide test and mody done as soon as I go back to the hospital.

thx for all your help

But isn't up to 3.0 blood ketones okay? Ketosis ( nutrititional), but not DKA? Ask @robert72 who has a great diagram

 

[Spiker]

But isn't up to 3.0 blood ketones okay? Ketosis ( nutrititional), but not DKA? Ask @robert72 who has a great diagram

OP posted the diagram a few screens up.
(It was me that was slightly worried, not her)

 

[robert72]

Only about two models of monitor work with blood ketone strips (obtained separately). One is the Glucomen LX. Is the other the One Touch Verio Pro??

The Abbott Freestyle Optium Neo is another

 

[nicolaryan09]

Hi mrbondsbody! I'm glad to see that several of the guys have mentioned MODY - it seems highly unlikely you are Type 2 - possible, but you do not have the main risk factors i.e. overweight, over 45, female with PCOS, of Asian origin and over 25 (obviously I don't know for sure you don't have this risk factor!). So, unlikely.

LADA would be the first thought - and the lack of antibodies do not actually rule that out (the presence of them would be a cause of diagnosis, but the absence doesn't rule it out). LADA is not hereditary although it is thought to have a genetic element, so your family history of diabetes would be largely a coincidence. I would say that although LADA is the most likely explanation, you do have the markers for the less common MODY - which is a whole set of different genetic forms of diabetes rather than a single condition. If you do have LADA, a VLCD will help with the most effective use of your remaining beta cells, but you will eventually progress to insulin, so you should test fairly frequently and make sure you insist on regular HbA1cs to make sure you don't end up very ill by failing to notice you have progressed beyond the point where you need insulin.

At your age i.e. an age where you have or might expect to one day have children, and with your family history of a non-progressing form of diabetes, the NHS is actually very sympathetic to funding MODY tests, because it is hereditary and you would want to know as soon as possible if you have passed the condition on to children (or might do one day). I think Exeter is the only place where tests for MODY are carried out, although that might have changed in the last few years.

Anyway, have a read of the Exeter MODY web site and if you think it's a possibility, ask your doctor about it - but be prepared that they'll know nothing about MODY and you might need to contact Exeter yourself to see what your options are for testing.

Nothing wrong with low-carb though whichever type of diabetes you have!

Smidge

Hi @smidge

Exeter is still where they test for MODY, you are quite right. It hasnt changed. My son was due to be tested for this but i think they have changed their mind. They are going to test his dads antibodies instead for type 1. Hes been diagnosed type 1 for 6 years but as (at the time) they didnt test for antibodies, they dont have any results for him so they are rechecking. If his antibodies for type 1 are a strong positive they are just going to diagnose my son type 1, even though hes showing neg for all antibodies at the moment. I do think they both have type 1, but i would of liked my son checking just incase. The diabetes team are fab though so i have every faith in them.

 

[mrbondsbody]

Ok this was the email I sent to the clinic:

In terms of my diet. I have not decided to go back onto a standard diet. For a number of reasons really.

1. Putting me back onto carbohydrate (>150 g) a day is dangerous for my health without medicines.
   
   
2. My current diet is controlling my blood glucose excellently (Last week my levels were consistently 4.7-5.6)
   
   
3. My type 1.5 antiobodies (GAD and islet cell antibodies) were negative
   
   
4. My dad is type 2, slim and being diagnosed in his early 30s and has not progressed to insulin

The last point 4 is interesting and after seeking professional advice, there is a rarer form of diabetes called MODY, which I think I should be tested. For now I will be continuing my diet measuring my blood glucose level regularly and if they should increase to the 10s then I will seek advice.

And they replied that I have to go in for a follow up appointment for "the doctor to chat to you to make a plan that your happy with. Also she was hoping that we could teach you how to use insulin in case required in the future." So I wonder if they have found anything?

QUESTION:

If I am on a low carb diet will that reduce my c-peptide levels?

Thanks,

James

 

[desidiabulum]

Re MODY -- there are people in the diabetes clinic at addenbrookes who are perfectly well primed on MODY -- they sent my relevant test results (GAD, c-peptide etc) to Exeter, and while they keep tweaking their definition of my MODY as they haven't identified the gene yet, they basically know their stuff. Do make sure that you see a proper consultant, not a registrar. If you see a registrar then ask if your notes can also be referred to a consultant, and specifically flag the MODY issue. Good luck

 

[Daibell]

Hi. I'm not an expert but I suspect the c-peptide just tracks your inulin level and is not affected much by low-carbing as such although the lower carbs will reduce the amount of insulin you produce hence fasting c-peptide is in some ways a better guide (my test was fasting)

 

[mrbondsbody]

ok so I went to see the consultant today. Its bad news. My cholesterol has gone to unsafe levels:

Cholesterol test

total: 8.0

HDL: 1.2

LDL: 4.9

Triglycerides: 4.1
HDL/TC= 0.15 should be >0.24
TG/HDL= 3.6 should be <2

The thing is before I went to the doctors I had only been the ketogenic diet 2 weeks, prior to that I had been on a low carb diet (60% fat/20% protein/20% carbs)

How long does it take your levels to adjust?

The triglycerides seem very high to me.

I had a very high fat breakfast (3 large eggs, butter and cream) one and half hours before as no one told me to come to the clinic without having breakfast.

As far as I read on labtests online it says that I should have fasted for 9-10 hs before. Which would probably alter this result. Think I might get retested.

So the doctors wants me to eat less saturated fat and replace with more monounsaturated fat.

and increase my carbs to 30g with every meal.

They have given me insulin just in case my blood sugar levels go up past 9.0

I don't know whether this is because I have'nt been on the ketogenic diet before that long.

Has anyone else seen changes in there lipids when just on a normal low carb diet?

They are doing further testing to determine if i am type 1 or type 2

No c-peptide done, testing for the rarer forms of type 1, plus my results are being sent to exeter for genetic testing (MODY)

So I could still be type 2.

 

[mrbondsbody]

This is a really interested article:

http://eatingacademy.com/how-low-carb-diet-reduced-my-risk-of-heart-disease

if my triglyceride test was false then, the ratio might be ok.

 

[phoenix]

Glad that they are doing diagnostic tests.
re your lipid tests. It seems that under normal fasting will not have made a great difference; an average 0.3mmol/l difference to trigs
But

Triglyceride levels are increased for six to eight hours after a standard meal.1, 3 If a patient has consumed a very high fat content meal prior to testing, or if they have slow lipid particle clearance after food (post-prandial dyslipidaemia), triglyceride levels could be increased more than the estimated 0.3 mmol/L variance, and misrepresent clinical significance

http://www.bpac.org.nz/BT/2013/November/lipid-testing.aspx

I've no idea how much will be due to the high fat diet (I'm not a low carber) However, do keep an eye on those levels and use insulin if necessary.

When I was diagnosed with T1 (1.5?) ,I was losing weight, my glucose levels were very high and my lipids were very similar to yours. I had ketosis ,hence the weight loss but the small amount of insulin that I was still making prevented severe DKA (did have some symptoms of that though). My lipids normalised within a short time of starting insulin. ( I did take a statin too but I don't think the reduction was completely down to that)
can only read the abstract of this but seems to confirm that diabetic ketosis can increase trigs and LDL
(note they use both diabetic ketosis and ketoacidosis ie ketosis caused by lack of insulin but not enough to cause acidosis)
http://archinte.jamanetwork.com/article.aspx?articleid=612199