To go private for LADA blood tests?

[Acacia]

Dear all

My mum (62) was recently diagnosed with diabetes in March after suffering extensive weight loss, polydipsia and polyuria (no ketones). Her HbA1c was 113mmol/mol. She has a history of autoimmune disease (rheumatoid arthritis, psoriasis) and Vitamin D deficiency, nil else. She has never been overweight nor skinny.

The GP gave her a diagnosis of T2DM and started her on metformin bd and told her to return in 3 months. No fasting C-Peptide test, GAD and Islets antibody tests were done. Because of her extensive weight loss (she looks bony and has lost a lot of fat and muscle) i feel LADA is a real possibility. However, the GP has dismissed the suggestion to do the above blood tests.

On metformin and a very low carb diet her diabetes is now under control:

Date. HbA1c (mmol/mol)
March 113
May 65
September 45

She has lost further weight (4kg since diagnosis), going from 49 to 45kg (bmi 20). She is not happy about her excessive weight loss (bony).
I was wondering whether to go private for these blood tests as we would want an accurate diagnosis.

 

[LucySW]

I'd say Yes, get the tests, because you need to know. Your mum's results are excellent, and she can avoid losing more weight by consistently eating more fat, but if you don't find out, her BG levels will rise again and she'll be at risk of damage before the doc agrees to give her insulin.

And avoiding damage is the most important thing.

Have you referred your mum to the diet calculator on Bloodsugar 101, diet pages? Here's the link:

http://www.phlaunt.com/diabetes/33614154.php

Kudos to her for great results.

 

[smidge]

Hi Acacia!

I'd say to get at least one of the tests done. Probably the c-peptide would be best because it will identify whether your mum is producing sufficient insulin to survive - if not, she needs insulin regardless of whether she is autoimmune or not. The GAD tests can be helpful in identifying LADA, but they can be inconclusive because the antibodies are not always present, so one time you can show them and another time not.

From what you've described, I would say LADA is a strong possibility. Most Type 2s have put weight on rather than lost it at the time they're diagnosed - the weight loss usually indicates a fairly serious lack of insulin. Many of us were misdiagnosed as Type 2 initially and denied the tests - they just seem to plump for type 2 if you're beyond about 25.

At the time I finally convinced the medics that i should have the GAD tests, they told me they were about £180 per test. I never did get the c-peptide test done.

Smidge

 

[jack412]

i'm guessing
sounds to me like she is lc without topping up with fat/oil, her body is hungry.
high bg with weight loss and ketones is more lada to me, if her diet is ok, i'd look elsewhere

http://www.dietdoctor.com/lchf
http://www.myfitnesspal.com/
http://www.phlaunt.com/diabetes/14045524.php

 

[Ian DP]

Hi acacia

Sounds very much like your mum could be LADA. It would be worth pushing for a GAD test with her GP first. Explaining your reasons why you think she is LADA. But a low carb diet is good either way, as it helps keep blood sugar levels low

But probably more importantly is getting weight back on, without increasing blood sugar levels.

More butter, more double cream, more cheese, more fat, more fatty meats (lamb and pork tend to be fatter than beef and chicken). More fatty fish. A bulletproof coffee can be a big help (30g coconut oil and 30g butter, whisked up to a froth..... Or sometimes I add some double cream.... This is around 500 calories and goes a long way to help put weight back on.

 

[LucySW]

Have you referred your mum to the diet calculator on Bloodsugar 101, diet pages? Here's the link:

http://www.phlaunt.com/diabetes/33614154.php
.

Dear Acacia,

We seem to be in consensus here about how your mum may need to eat more fat to gain control of her weight again. The point about the calculator above is it's very well informed and it gives you a framework to work inside. I didn't get the point about fat for a long time and it came as a total surprise to me. But as I'm keeping carbs to 30g/day, that's only 5% of my calorie intake. I have to keep protein to 15% because Xs protein gets converted over to BG. So that means, yes, 80% of calories from fat.

Once I understood that, life became a lot less hungry. Fat in bulletproof coffee, nuts, cheese, cream - as Ian said. You don't have to eat lumps of lard with a knife and fork : it's not as bad as that.

So on a practical level, would expect fats to help your Ma.

Lucy

 

[elaine77]

Hey there,

My consultant told me that c-peptide is not reliable as it's not insulin per se and so is just an indication.. My c-peptide doubled from diagnosis to 6 months after diagnosis so it is a funny one! I would definitely get a test done for GAD and for IA2 antibodies as they are the two main ones indicative of autoimmune diabetes... If she has neither of those then it possibly isn't LADA but I would put pressure on the GP first definitely.. Hope this helps

 

[Daibell]

Hi. I agree with Smidge. I had the c-peptide and GAD done privately (I used Medi-checks). The c-peptide result isn't totally reliable but will show extremes one way or another as mine did i.e. I had very little insulin. My GAD was negative. Again there are various things that can cause beta-cell destruction such as viruses, pancreatitis and rarer anti-bodies. I personally think the c-peptide is the most useful as it indicates whether or not you need to go onto insulin whatever the cause. HCPs are often not good at testing for non-T2 diabetes so you need to take control. Certainly losing weight is a big pointer

 

[elaine77]

C-pep won't give any indication of autoimmune diabetes at all. It will show if u need insulin though so is useful for treatment, but not diagnosis. Just depends on what you are hoping to find out really.

 

[Acacia]

Thank you all for the helpful advice. We will try and push for the tests with the GP for one last time. If not, we will go private. Lucy I have passed on the diet calculator to my mum. In terms of high fat diet, I'm guessing the healthy unsaturated fats more so than the ones that clog up arteries? Does Dr. Bernstein's book give specfic advice on diet for suspected LADAs? I'm thinking of buying a copy.

Thank you all again

 

[LucySW]

Thank you all for the helpful advice. We will try and push for the tests with the GP for one last time. If not, we will go private. Lucy I have passed on the diet calculator to my mum. In terms of high fat diet, I'm guessing the healthy unsaturated fats more so than the ones that clog up arteries? Does Dr. Bernstein's book give specfic advice on diet for suspected LADAs? I'm thinking of buying a copy.

Thank you all again

Hi Acacia,

1) I really do recommend Dr B. It's on Kindle etc also. I've now gone thro it slowly four times. Yes, he gives a diet plan based on severely restricting carbs to 30g/day (6g at breakfast, 12g for lunch, 12g at supper), and this works - it really gets BS down. It's even more essential for fully developed Type 1s, because low carbs mean low insulin doses and hence less insulin overdose. I'm not there yet: I'm a quite early LADA (quite possibly like your mum), still controlling BS without meds but trying to get good enough control to minimise future developments.

But I got dreadfully hungry before I got the LCHF point about fat, and for getting thro the day and not being starving hungry, and for stopping losing weight, I really recommend it. I still follow the Bernstein plan, though, and see it as absolutely the foundation stone for diabetics who want a healthy future.

He says very little directly about LADA, except to urge that in his experience, the pancreas can recover if BS is got right down to genuine ' healthy' levels, ie 4.6 to 5.2. But his basic point is incredibly relevant to all LADAs.

There are quite a few of us who feel that his basic plan is brilliant and only needs tweaking: see below. I'm putting in links to a couple of threads you might want to read.

managing the Bernstein plan: http://www.diabetes.co.uk/forum/threads/managing-the-bernstein-eating-plan.63042/

Ian DP's project: http://www.diabetes.co.uk/forum/threads/can-i-prove-the-drs-wrong.53061/

My project: http://www.diabetes.co.uk/forum/threads/ladas-preserving-their-beta-cells.62177/

2) On fats, I'd suggest doing some more reading. Current thinking is that the old healthy/unhealthy fats classification is wrong. I would class many saturated fats as okay. I eat lots of butter and cream, eggs and cheese, olive oil, and coconut oil when I can. I see Omega-6 oils (sunflower, corn etc) as the 'bad' ones, also because they're heat-treated. But you read up around that and make up your own mind.

You've come to the right place: I think this forum is wonderful. So much help, and companionship.

Good luck, Lucy

 

[Acacia]

Hi all. Just wanted to update everyone regarding the blood tests. The GP refused to carry them out saying that "he was not allowed to" despite her losing further weight (42kg). So we opted to go private last week (£255). Her anti-GAD antibodies are strongly positive at 31u/ml (the normal range is less than 1), whilst her fasting c-peptide is 1.36ng/ml. We are going to try and push for a endocrinology clinic appointment. Hopefully the GP will agree seeing as the blood results and clinical history all point towards LADA. It makes me think about how many LADA patients are being failed by the current system, and perhaps even being prescribed inappropriate treatment (My mum was initially prescribed glicazide which is bad for LADA).

 

[smidge]

Hi Acacia!

Well, now you know - basically a positive GAD test almost always results in a re-diagnosis of Type 1/1.5 (LADA). It really is shocking the way we LADAs are treated. It saddens me that more than 5 years after I was made very ill by a misdiagnosis of Type 2, it is still happening. I know £225 is a lot of money to us as individuals, but it is a drop in the ocean for the NHS and I think it is criminal that these tests are not performed routinely.

I finally got to see a consultant after threatening to sue the surgery that had misdiagnosed me. Unfortunately you might have to threaten them to get the care and treatment your mum needs.

Good luck

Smidge

 

[CarbsRok]

Thank you all for the helpful advice. We will try and push for the tests with the GP for one last time. If not, we will go private. Lucy I have passed on the diet calculator to my mum. In terms of high fat diet, I'm guessing the healthy unsaturated fats more so than the ones that clog up arteries? Does Dr. Bernstein's book give specfic advice on diet for suspected LADAs? I'm thinking of buying a copy.

Thank you all again

Your Mum is entitled to a second opinion, ask nicely then demand, if no joy. I'm sure the GP will do the tests as it would be cheaper than sending to an endo plus the endo doing the blood tests.
It's just a thought, does your Mum or has your Mum used steroids for her arthritis? I asked because steroids can and do cause diabetes.

 

[LucySW]

Well done, and get her to the endo as soon as you can. She might be need ing some basal insulin already. Where are her BGs? Without insulin, low carb is pretty essential.

 

[Ian DP]

Your mum, being LADA, will probably get little change of medical advise from the NHS.... But very importantly, now being aT1, she will get testing strips prescribed in reasonable quantities. They will likely still advise on a healthy diet with 1/3 plateful of carbs. Many of us on the forum have found this carb advise to be wrong, as does Dr Bernstein and many others. Dr Bernstein book diabetic solution is a very good, and very interesting, read. I do recommend you get your mum a copy of this book.

Your mum, being LADA, still has some insulin making beta cells remaining. The longer she can keep some remains beta cells, the less insulin she will need to inject, and if not on insulin now, the longer she will go before she needs to inject insulin.

My thoughts are (in line with Dr Bernsein but not NHS):-

Your mums beta cells are dying off, possibly fairly rapidly. They are degenerating through high blood sugar levels. Eating carbs will cause high blood sugar levels. Every slice of bread eaten will kill off some beta cells, as will each portion of rice, pasta and potatoes. Any time your mums blood sugar levels go above around 7.0 your mum will loose some beta cells, which can never be replaced.... Thus the gradual need for insulin injections gets nearer / more.

I was diagnosed LADA a year ago, I low carbed for a few months, but still could see my insulin making (beta cells) very slowly getting worse, until I read Dr Bernstein's book, and followed his guidelines. After 5 months of Dr Bernstein I can not detect any deterioration of my beta cells.... My weight, food intake and BG levels are the same now as they were 5 months ago.

NHS carb guidelines are around 250g per day, low carbing is often described around 50g to 100g per day. Dr Bernstein's solution is just 36g per day, and with lots of fat (meat, fish, cheese, cream, butter etc). But more importantly is Dr Bernstein guideline of keeping BG levels at 4.6 fasting and 5.6 2 hours after eating.... This is the key to keeping as many of your mums healthy beta cells for as long possible.

I have found the Dr Bernstein LCHF diet quite easy to follow, and more importantly, I am confident I can sustain it for the rest of my life. Your mum is around the same age as me, I look back and see it as a simple old fashioned diet, no processed food, similar to that as I had as a child, but without potatoes.

I should add, that testing BG levels needs to be done much more frequently, to establish what foods raise your mums BG levels.... Often called eating to your meter. Ignore what the NHS say, testing needs to done after eating. 1 hour after and then again 2 hours after..... This will indicate what your mum can tolerate and what she can't..... Yes, lots of testing, but only for a few months as you quickly establish what foods you can tolerate and what you can't. I only test about 3 times per day now.... I know what I can eat and what I can't.

I don't think anyone diagnosed LADA can keep their last few remaining beta cells indefinitely. But I do think they can be made to last for a very long time if you look after them (with low BG levels). Many LADA's have gone 10 years and more before the need of insulin, and even then their insulin requirement can remain very low for many more years..... But only through keeping low BG levels.

.... Dr Bernstein's book is a must read, if your mum wants to keep as many of her remaining beta cells for as long as possible. Only around £5.00 on kindle or iBooks.

 

[phoenix]

Hi,
I personally haven't seen any evidence for Ian's claim about remaining insulin free for 10 years, five years is nearer the normal maximum given. http://www.ncbi.nlm.nih.gov/pubmed/18083788. The death of the beta cells is caused by the bodies own autoimmune system (working rather too well but without sufficient discrimination)
I also developed LADA in my 50s. I have been using insulin for almost 10 years and have a good and active life since then. At actual diagnosis (I had probably had the condition for at least a couple of years), I had absolutely no choice about going onto insulin, because I had DKA at the time but even if it had been diagnosed prior to this, the normal practice is to introduce small amounts of insulin fairly early on.
Insulin has allowed this relatively normal lifestyle , I eat a conventionally healthy diet with lots of fresh produce .Since diagnosis I have done several long distance footpaths, gone skiing and run three marathons. .

 

[Ian DP]

Phoenix is right, there seems to be no conclusive evidence..... Dr bernstein says:-

"There are several hypotheses as to why conventional treatment won’t let the honeymoon go on forever, but my experience with patients indicates that with proper treatment it can. Essential to this is a low-carbohydrate diet and normal blood sugars. This will help preserve whatever insulin-producing pancreatic beta cells you may have. (The same is true for type 2 diabetics. Beta cell burnout the destruction of beta cells caused by excessive demands on the pancreas and by the toxic effect of high blood sugars upon beta cells — can be avoided, halted, and in some cases reversed if you get on the Diabetes Solution program and get your blood sugars normalized.)

research has demonstrated that beta cell burnout can be slowed or halted by normalizing blood sugars."

.......He says Normalising blood sugars is 4.6 fasting and 5.6 two hours after eating.

On the 5 months I have been following his solution I have found everything he says to work... For me. I am sure it doesn't work for all, but on the other hand when you only have a few beta cells left, you only have one chance to preserve them, and to the best of my knowledge nobody has a better solution than Dr Bernstein, for preserving your beta cells.

 

[LucySW]

I personally haven't seen any evidence for Ian's claim about remaining insulin free for 10 years, five years is nearer the normal maximum given. http://www.ncbi.nlm.nih.gov/pubmed/18083788

There isn't any evidence documenting Bernstein's success in stopping beta-cell burnout. He never showed any interest in getting it documented, because his priority is treating his patients. Fair enough. Really I don't think we can claim any proof.

But his approach is a method very well worth trying, IMHO. His principle that you should keep insulin doses down by keeping carbs low is clearly correct. Why some diabetics reject this blindingly obvious piece of reasoning is a mystery to me.

OTOH we have some latitude in deciding how low carb we are going to go, and that's what we all do. Dr B's levels are very very low indeed. They'll work for some, not for others.

I think what works, works. I would always bring Bernstein to people's attention. His basic message is, I think, the only way to sanity. But he's not God.

Lucy

.

 

[LucySW]

Her anti-GAD antibodies are strongly positive at 31u/ml (the normal range is less than 1), whilst her fasting c-peptide is 1.36ng/ml. We are going to try and push for a endocrinology clinic appointment.

Get to the endo soon. LADAs who are losing weight are generally in ketosis, which will ultimately become DKA. Is she checking ketones?

Hope she gets her carb regime sorted soon. As I said, Jenny Ruhl's nutritional calculator is really valuable in my view.

Personally as you'll see from on here I think low-carb is blindingly obvious. It's up to each of us to decide, of course..

Lucy