• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

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

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.
 
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
 
If she's been in nutritional ketosis for two months then urine ketone strips will be unreliable.
 
Last edited by a moderator:

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.
 

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!
 

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
 
@Spiker
GAD is normally thought to be the most persistent but definitely some people are positive for some and not others
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
 
Last edited by a moderator:
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??
 
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
 
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)
 
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
 

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.
 
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
 
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
 
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)
 
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.
 
Last edited by a moderator:
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
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
 
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…