neurological auto-immune and diabetes

[increasingly cynical]

Ok - life is such a laugh isn't it - just got on top of having 'LADA' and now it turns out that the auto-immune attack (which hits the pancreas and is the 'defining feature' of LADA) isn't the usual 'pancreas specific' one, instead it is 'generic' and is also randomly hitting other systems in the body, for example I am getting neurological symptoms as well plus a range of other weird phenomenon..and the indication is that basically I just sit and wait for which system the attack hits next and the dear old docs will tell me what medication to add to address that symptom (no discussion of curing the disease... just wait and treat the symptoms..)

Anyone else had this broader problem?

In terms of controlling blood sugar it seems that this is virtually impossible now and even if I do the BG is just one of a cascade of symptoms I may have to deal with..

Oh joy... :?

 

[totsy]

i have got thyroid disease too which is auto-immune and being checked for coeliac :?

 

[suzi]

As T1 Diabetes is an auto immune disease its not uncommon for other auto immune to follow/accompany (i stress not everyone will develop addittional illness'), my T1, 10yr old son is both T1 and coeliac, as are many. Unfortunately with genetics/enviroment/lifestyle ect, i doubt if anyone on this planet can hold their hand up and say i'm 100% healthy with absolutely no illness, aches or pains. If there is please get in touch with your magic potion
Suzi x

 

[Dennis]

Hi ic,

Unfortunately you are right about symptom and cause, particularly for type 2s. Every diabetes treatment is designed to deal with the symptom (high BS) rather that the cause. The reason is that nearly all research is conducted by pharmaceutical companies and it is not in their interests to find causes - their profits come from finding better ways of treating the symptoms.

 

[Jenny2]

I have similar problems. A rare primary immunodeficiency disorder, which means I have to have treatments in hospital every fortnight. That's fine - it seems to work .... but as one of the treatments (steroids) has led me to put on masses of weight, I have since developed Type 2 diabetes. We both seem to experience pain etc., which in my case is apparently due to my overall condition, but the good docs are mentioning that I may be getting neuropathy. How do you tell the difference? I think I am just as confused as you ... so keep smiling - someone somewhere will be able to make sense of it all. And then, hopefully will be able to explain it all simply!

Best of luck!

 

[janabelle]

Hi, increasingly cynical
Always presumed that type-1 was an auto-immune condition anyway, that's what I was told at diagnosis 20 years ago. What's the difference with LADA? Has your doc diagnosed your condition through blood tests or any other tests? I have retinal degenerative condition completely unrelated to my diabetes, which unfortunately leads to loss of sight-the plus side being I wont have diabetic eye complications :x
It's one kick in the teeth after another. Such is life.
Jus

 

[increasingly cynical]

Thanks All interesting, helpful and supportive comments! It sounds like the reality is that the medical profession does not really know a lot about either specific or more generalised auto-immune disease.. and yes, Dennis, comments regarding the drug companies sway over the literature are definately upheld by the evidence! Regarding Type I vs LADA Janabelle, there isn't much difference in process or outcome, LADA is due to an auto-immune attack on the pancreas just as childhood onset is, it just happens in adult hood (the upside of which is that LADA is slower onset and insulin production of some sort is preserved for a longer period of time, the downside of which is that according to the very small numbers of studies done on LADA, 'treatments' such as insulin don't seem to be very good because the pancreas can continue firing and lead you to random highs and lows in BG as the 'one unit carbohydrate, 1 unit insulin' type of approach is largely meaningless in LADA and the studies show no difference in BG control at 4 years or even 10 years in people with LADA given insulin compared to those not given, except for a higher proportion of hypos in those given insulin of course..) LADA is diagnosed primarily via a blood test for 'GAD 65' (antibodies indicating an autoimmune response, if it goes up to about 1000 you are diagnosed as 'LADA' - an autoimmune attack specific to the pancreas, if it goes well beyond this the diagnosis is a more generic multi-system , usually 'neurological' auto-immune attack... there is a certain amount of 'smoke and mirrors' here if you delve down as it is clear no-one, including the labs who carry out the test are really confident about what it all means...Jenny2 ... steroids, as you know (!)can have really serious side effects.. have you been given any other options for long term treatment?

Best of luck to all of you ... I am so impressed by the positive attitudes of everyone on this forum.. . many people experiencing what a lot of you are going through would just give up, yet you are all so upbeat about things - wonderful!

 

[dipsticky]

Wow. Real interesting.

D.

 

[janabelle]

Presumably if it's an auto-immune condition like type-1 LADA patients will ultimately be put on insulin because their own insulin-producing cells no longer work. You say that LADA patients experience 'random highs and lows',-as a type-1 patient treated for 14 years on 'human' synthetic insulin, and 4 1/2 on Lantus, I certainly had many random highs and lows. I remember asking my consultant whether my diabetes would ever be easy to control, she told me it would prob always be brittle, and I accepted it. When I was having erratic, unpredictable control on Lantus I was told, by the same consultant, that it did not matter that my blood sugars were fluctuating between 2 and 15 and I accepted it. We trust our doctors don't we?
It was my own decision to change to animal insulin last May, after seeking advice. My control since has been predictable, consistent and I am able to keep my BS below 8 most of the time, bar the occasonal hic-cup!
There are many people, some of them on this forum reporting similar probs with BS control on synthetic, particularly analogue, insulins.
My point is that if LADA patients are having these problems with random highs and lows, there's a possibility that these could be caused by the insulin itself.
Just a thought.
Jus

 

[increasingly cynical]

Hi Jus,

Hmm.. there does seem to be a consistent 'disatisfaction' on the forum with analogue insulins and this does seem to be borne out in the research literature... what does one do if no alternative is offered? More of a problem if (like me) you are vegetarian as no animal insulins are appropriate either and E-coli ("human") insulins haven't been offered for years... peehaps we should start a survey ...

Hmm..

:?

 

[dipsticky]

Hey cynical.

Where's your scientific research to back this up then ?

D.

 

[janabelle]

Increasingly cynical, did u notice that some postings on this subject have mysteriously disappeared???
Did someone use an obscenity, been out all day did I miss something?
Jus

 

[cugila]

I have just arrived back And I can assure you that no posts have been deleted at all.

Ken.

 

[sugarless sue]

I have also checked,what do you think is missing as there is not record of anything being deleted?

 

[janabelle]

Ken and Sue, soz it was on another thread. apologies
Jus

 

[Spiral]

I think part of the problem is that medicine is not the precise science "they" would like us to think it is, and that we would like to believe it is :| Tests and investigations are often about ruling things out rather than definitive diagnostic tests to rule something in. Add to that variation down to individual genetics and the impact of any medication, especially if you are taking more than one medication, and the promotional literature of the drug companies - which often raises expectations of a miracle cure :? I think a lot of the time it comes down to a best guess, based on knowledge of what should/could happen and clinical experience. That said, I think the medics generally help more than they harm.

I think one of the most underestimated things in medicine is the impact of poor nutrition on someone's medical condition. I work with people who have neurological illnesses and have seen several people, in what was believed to be the terminal stages of neurological illnesses, make massive improvements when their nutritional intake has increased and improved :shock: often by having a nutritional mix given via a feeding tube direct to the stomach. Yet poor nutrition has not even been considered as a factor in their decline :roll: There have been numerous stories in the media over the last year or so about people starving on hospital wards because they have not had assistance at meal times :evil: Just look at the impact of good nutrition on the survival rates of people with AIDS.

Many people who post here have improved by getting to grips with their diet and improving their nutritional levels, sometimes by supplements, in the longer term. This does not make the illness go away, but at least it gives your body a fighting chance. Food intolerance and allergies are other factors in long term chronic illness that can affect how well you do and the symptoms you have, as are environmental chemicals. I think these are all things that need to be considered if you have persistent problems that the medics can't get a handle on. This does not mean throwing out conventional medicine, but it does mean becoming an activie participant in your care. Not an easy thing to do when so many of the symptoms you have are about what you eat and what your body does with what you have eaten in the first place :|

 

[janabelle]

Soz Ken and sue, my mistake.
Jus

 

[cugila]

As previously stated the logs on this forum show that no posts have been deleted from here. I think you may be confused with a Dipsticky post elsewhere.

 

[marphil]

Re: Levemir, Glargine or Porcine Insulins

At last I've reached some place where animal insulin is not hushed up. I was put on the new insulins when they first were introduced after several years on PZI and soluble insulin. Over the years I have become gradually worse and my BM's were getting more brittle. I have been in contact with IDDT who are promoting animal insulin because there is a danger of insulin manufacters phasing it out. For the past two months I have been on Porcine Neutral and Isophane and feel so much better. There's no harm in asking to be put back on or ontroduced to animal insulin. It is worth a try.

 

[Katharine]

I have increased vitamin D intakes hugely in my family in the hope that this will limit the impact of autoimmune diseases. There is proof that these occur more commonly when people are deficient but of course no RCT to show that the outcomes will actually change.