To pick up the Warwick study about thiamin -- the chappie there says that the 'missing' B1 in diabetics is actually of quite huge proportions (being 'washed out' of the system, not just failing to be stored or used properly), so that his thought is that something in the order of 16-24 times the usual GDA amount is what will be needed in the long run, which cannot be achieved through diet alone. He also went on to say that things are not yet at the 'recommending' stage...but personally, we are keeping a very close eye on that research. It's quite compelling evidence. Here's the you tube link: http://www.youtube.com/watch?v=UNRaFjdeuZk
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- Thread starter bev
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Hi Patricia,
Unfortunately the sound isnt working on my lap top - so couldnt hear the link! But, from what little i have researched - there does seem to be a 'problem' with vitamin b1 in diabetics. If this is the case, i wonder why we are not told this on diagnosis? If it means a change in dietary requirements or a vitamin pill to help with any future possible complications - it puzzles me that we are not told!
p.s. I have looked at some childrens diabetes sites - but they all seem to be American sites - they have different ratios etc and all seem to be on pumps! Can you direct me to a site for the UK? Thanks. Bev
Unfortunately the sound isnt working on my lap top - so couldnt hear the link! But, from what little i have researched - there does seem to be a 'problem' with vitamin b1 in diabetics. If this is the case, i wonder why we are not told this on diagnosis? If it means a change in dietary requirements or a vitamin pill to help with any future possible complications - it puzzles me that we are not told!
p.s. I have looked at some childrens diabetes sites - but they all seem to be American sites - they have different ratios etc and all seem to be on pumps! Can you direct me to a site for the UK? Thanks. Bev
I think we are not told anything about b1 on diagnosis because it's all still in the study stage...And the amounts of supplement are really rather large, so just taking any old supplement is as good as nothing I imagine. I think that the medics are waiting for firmer evidence, as is the case with so many things...However, I think we are getting closer ourselves to taking B1 on board.
I don't know how much digging around you've done, but we did a great deal upon E's diagnosis, and discovered *many* potential factors in his treatment...such as the potential preservation of beta cells via very good control in the honeymoon phase, etc.
I'm American and through a close friend we contacting someone very high up in pediatric diabetes in the US, and it's clear that there the approach to treatment is generally quite different: literally all of her patients go almost straight onto a pump with a continuous glucose monitor, because the greatest control is afforded with a pump, and there is anecdotal evidence to show that good early control may help with stability later in a diabetic's life. There are also well funded trials now which are working hard to slow down the auto-immune effect in the honeymoon stage, which do show that there is greater control therefore for the first two years at least...There is one happening at Cambridge now, actually. ANYWAY, we decided against these trials in the long run, but the whole thing made us aware that being proactive was really the way to go through this. We are therefore pushing hard for a pump for E through our local primary care trust. Everyone agrees that pumps and CGMs are actually the best way forward, but the funding just isn't there.
That aside, sites: there *is* a children with diabetes uk site, which is interesting but mainly concerned with primary age kids and dealing with schools, but the emails forums are very active. I've also recently joined tudiabetes.com, which uses US figures (I think, btw, that you divide US numbers by 18 in order to get equiv UK mmols!?), but is a very active and interesting place. I'm unsure if there are distinct parent areas of that site (it's more like a social networking place), but am waiting to hear back from the administrator on that...
Long answer, sorry! Best.
I don't know how much digging around you've done, but we did a great deal upon E's diagnosis, and discovered *many* potential factors in his treatment...such as the potential preservation of beta cells via very good control in the honeymoon phase, etc.
I'm American and through a close friend we contacting someone very high up in pediatric diabetes in the US, and it's clear that there the approach to treatment is generally quite different: literally all of her patients go almost straight onto a pump with a continuous glucose monitor, because the greatest control is afforded with a pump, and there is anecdotal evidence to show that good early control may help with stability later in a diabetic's life. There are also well funded trials now which are working hard to slow down the auto-immune effect in the honeymoon stage, which do show that there is greater control therefore for the first two years at least...There is one happening at Cambridge now, actually. ANYWAY, we decided against these trials in the long run, but the whole thing made us aware that being proactive was really the way to go through this. We are therefore pushing hard for a pump for E through our local primary care trust. Everyone agrees that pumps and CGMs are actually the best way forward, but the funding just isn't there.
That aside, sites: there *is* a children with diabetes uk site, which is interesting but mainly concerned with primary age kids and dealing with schools, but the emails forums are very active. I've also recently joined tudiabetes.com, which uses US figures (I think, btw, that you divide US numbers by 18 in order to get equiv UK mmols!?), but is a very active and interesting place. I'm unsure if there are distinct parent areas of that site (it's more like a social networking place), but am waiting to hear back from the administrator on that...
Long answer, sorry! Best.
Hi Patricia,
Thanks so much for all that information - we are only 13 weeks in so we have so much more to learn!
I wasnt 'knocking' American sites per say - i just found trying to understand their 'terms and phrases' very difficult!
But the general discussion material was very interesting.
Very interesting what you say about preserving beta cells during the honeymoon period with good control. Thanks.
Bev
Thanks so much for all that information - we are only 13 weeks in so we have so much more to learn!
I wasnt 'knocking' American sites per say - i just found trying to understand their 'terms and phrases' very difficult!
But the general discussion material was very interesting.
Very interesting what you say about preserving beta cells during the honeymoon period with good control. Thanks.
Bev
Jennie
Member
- Relationship to Diabetes
- Type 2
So far I have resisted the urge. I take 2 tablets for high BP, one statin and recently my pharmacist wanted to give me cod liver oil (yuck) which I politely declined! I dont really want to take any more tablets just in case I start to rattle
Corrine a bit belated answer. You say you don't like cod liver oil - me neither, but I found an alterative -
(see link) Flaxseed-oil Capsules... Any body else tried them? I have been taking these 2 per day for quite a time -
Omega 3 etc is supposed to be good isn't it.
I also take 500mg Vit C per day, plus 12 meds pills (which includes 3 x 500mg Metformin).
Statins I refuse to take because they made me feel really unwell with pains in my legs.
My GP has a go at me now and again to see if I will change my mind.
Muscle pains are the principal side effect of statins and if it occurs, the statin should be stopped. However, people who find they have side effects with one statin can find that they do not get the side effects with a different statin.
However, there is a question over whether people really need statins in the first place and increasingly people are questioning the benefits of statins overall.
And as stated elsewhere, I've found that they tend to get prescribed "on automatic" whether they are really needed or not. If they are being prescribed on the basis of "total cholesterol" tests then I find it highly questionable whether that is a reasonable response in the first place.
Yes I am on a statin, but I am trying to deal with my lipids in order to justify removing them entirely. I don't suffer from any ill effects from them.
Quite often the main problem with high cholesterol in diabetics is related to triglicerides which is caused by high carb consumption - which is the problem with BG in the first place. Statins don't make much difference as far as trigs are concerned so in a lot of cases I am not convinced they are appropriate in the first place.
However, there is a question over whether people really need statins in the first place and increasingly people are questioning the benefits of statins overall.
And as stated elsewhere, I've found that they tend to get prescribed "on automatic" whether they are really needed or not. If they are being prescribed on the basis of "total cholesterol" tests then I find it highly questionable whether that is a reasonable response in the first place.
Yes I am on a statin, but I am trying to deal with my lipids in order to justify removing them entirely. I don't suffer from any ill effects from them.
Quite often the main problem with high cholesterol in diabetics is related to triglicerides which is caused by high carb consumption - which is the problem with BG in the first place. Statins don't make much difference as far as trigs are concerned so in a lot of cases I am not convinced they are appropriate in the first place.
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