Hi everyone
Does anyone have any experience with b1 Deficiency? Or have any links to more modern information. My specialists are not very helpful/knowledgeable on this.
I would value any information on the symptoms you had/have because of it, if it is an ongoing issue for you, - if you know why it is an issue - absorbtion (where your disease is that prevents this) / not eating gluten / genetics / an enzyme deficiency or another reason, if you take supplements thiamine/benfotiamine tablets/injections or eat specific things to counter this, and how you monitor your levels. Also if it is safe to take large amounts of b1 on an ongoing basis.
I would also really appreciate information about thiamine blood testing that you get - the type of test, normal range and units would be great. The testing done here seems to have a totally different reference range to other countries so I am a bit stumped here too. There was also some confusion about whether they were testing for the b1 iteself - or an enzyme - transketolayse.
The main information I can find is around 'beri beri' and its 'dry' and 'wet' varieties which seem antiquated in the least. I am not a sailor from the 1800's - nor am I an alcoholic ( though I am sure the local pharmacist thinks I am with all the tablets I have been getting..!)
I have been having issues with deficiency and am having to take massive amounts of prescribed tablets to try and counter it and even get it absorbed. I am frustrated as the drs won't allow me to have an injection to boost my levels - because I am not an alcoholic, ( they keep hoping it will be a b12 deficiency next time which they are more than happy to give an injection for!?!) and I am not happy with their strategy of 'well we will throw some tablets at it and maybe she will stop asking difficult questions.' Testing in my area is difficult to access and the drs are hesitant to do it as it is not cheap. Results take 2-3 weeks, and they don't see the point - 'just keep taking the pills...'
Till now I have been going with the 'taking lots of tablets as they have prescribed approach' , however I need to arm myself with some knowledge before I resume advocating for myself on this particular front.
Does anyone have any ideas here? I am also frustrated as everything I read says B1 Deficiency can be fatal, or cause permanent severe damage - and very quickly so - which I am not ok with...!
Any helpful suggestions or ideas welcome and needed!
Thankyou
T
Does anyone have any experience with b1 Deficiency? Or have any links to more modern information. My specialists are not very helpful/knowledgeable on this.
I would value any information on the symptoms you had/have because of it, if it is an ongoing issue for you, - if you know why it is an issue - absorbtion (where your disease is that prevents this) / not eating gluten / genetics / an enzyme deficiency or another reason, if you take supplements thiamine/benfotiamine tablets/injections or eat specific things to counter this, and how you monitor your levels. Also if it is safe to take large amounts of b1 on an ongoing basis.
I would also really appreciate information about thiamine blood testing that you get - the type of test, normal range and units would be great. The testing done here seems to have a totally different reference range to other countries so I am a bit stumped here too. There was also some confusion about whether they were testing for the b1 iteself - or an enzyme - transketolayse.
The main information I can find is around 'beri beri' and its 'dry' and 'wet' varieties which seem antiquated in the least. I am not a sailor from the 1800's - nor am I an alcoholic ( though I am sure the local pharmacist thinks I am with all the tablets I have been getting..!)
I have been having issues with deficiency and am having to take massive amounts of prescribed tablets to try and counter it and even get it absorbed. I am frustrated as the drs won't allow me to have an injection to boost my levels - because I am not an alcoholic, ( they keep hoping it will be a b12 deficiency next time which they are more than happy to give an injection for!?!) and I am not happy with their strategy of 'well we will throw some tablets at it and maybe she will stop asking difficult questions.' Testing in my area is difficult to access and the drs are hesitant to do it as it is not cheap. Results take 2-3 weeks, and they don't see the point - 'just keep taking the pills...'
Till now I have been going with the 'taking lots of tablets as they have prescribed approach' , however I need to arm myself with some knowledge before I resume advocating for myself on this particular front.
Does anyone have any ideas here? I am also frustrated as everything I read says B1 Deficiency can be fatal, or cause permanent severe damage - and very quickly so - which I am not ok with...!
Any helpful suggestions or ideas welcome and needed!
Thankyou
T