iron and folic acid

[fenty]

am due to have another b12 injection next week but on asking my g.p how long i have to keep taking iron and folic acid she werent quite sure and told me to ring my gastro team that are looking after me,they told me to ask my g.p,what the heck goes on with these people ? why dont they communicate with each other?,can anybody give me some advice as to if this is a long term thing i have to be doing,does anybody have any remedies to help with these blasted pins and needles and itchy calfs as im all out of ideas ?,is anybody out there has/had suffered very worrying weight loss and if so what can be done to help get some weight gain,have tried supplements etc to no avail,any advice will be greatly appreciated as these along with the other problems that go with p.a is starting to become alarmingly worrying to myself and my family.look forward to any help/advice given to me.

[Hidden]

Hi Fenty,

It depends why you are suffering from weight loss as to what may help you. I have bile salt mal absorption and been given colestid which helps and helps keep weight on, but in my case my problem is loosing weight cause I do not absorb fat, pass it out terribly quickly say.

Concerning iron and folate I'd ask for a blood test to see how your serum folate and ferritin (_iron storage) is, depending on that result you may need to stay on treatment or not, quite simple..

Kind regards,

Marre.

[fenty in reply to Hidden]

thanks for the reply marre,the only thing my wife and i keep getting from g.p and gastro is that b12 deficiency and p.a is wreaking havoc with my body(as if we dont already know that)am having problems within my liver(fluid and cysts,ascites we were informed)and by crikey its so painful and is worse after eating,weght loss is im told due to all the things associated with b12 def. and p.a,yes i do eat regularly but it feels like im swimming against the tide,i will do as you suggest and insist for blood test regarding folate and ferritin levels,thanks once again as any suggestions are greatly appreciated,not one for posting often but read lots of peoples comments that i find a great source of help and comfort,its a pity i cant say the same regarding how much is available from my local health authority.

[Hidden in reply to fenty]

Wishing you good luck, it does not sound as if you are very well, hope things will improve for you...Marre.

[fenty in reply to Hidden]

thanks maree,no not been having such a good time,i hope youve been faring better yourself as i wouldnt wish how ive been feeling on anyone else,its so nice to know that im not alone and there are people such as yourself know and understand just how this illness affects us,who provide advice and information,and for this i am truly grateful for all replies and comments.big big thanks.fenty.

[Polaris]

I'm so sorry you aren't feeling any improvement with regular injections fenty.

As you are already seeing a gastro, I wonder if you've had any tests for coeliac disease? As you probably know, many autoimmune diseases are linked to leaky gut from gluten and, personally, I've found a huge improvement in many digestive problems, etc. since avoiding it.

My relative has severe deficiency with weight loss and similar neurological symptoms to yours, despite having frequent injections. We've both tried supplementing with tablets, sprays, patches and she is finally finding her neurological symptoms in particular have improved with Jarrow's 5000 mcg dissolved under the tongue. You might be interested in the following extract from BMJ Rapid Responses by Wilhelmina Rietsema. In an article elsewhere Wilhelmina also recommends 'Superior Source' methylcobalamin 10,000 mcg. :

" Is it important which form is used in treatment? In most people, it does not matter. They can convert cyano- and hydroxo-cobalamin into the active forms needed. However, I have recently reported a case in which it did matter. The severe vitamin B12 deficiency, including dementia and psychosis, responded to treatment with high dose oral methylcobalamin, but not to equally high dose oral hydroxocobalamin. [1]

1. Rietsema WJ. Unexpected Recovery of Moderate Cognitive Impairment on Treatment with Oral Methylcobalamin. ."

bmj.com/content/349/bmj... (Last letter at bottom of page 1)

[fenty in reply to Polaris]

yes have been tested for coeliac disease that came back negative,my daughter was diagnosed as having coeliac around 4 years old so this was one of the first things tested for initially,thanks for other info and any other suggestions will be massively appreciated,as im in this for the long haul ive a lot to realise with this p.a so will read these pages regularly and learn from other p.a sufferers experiences.many thanks.fenty.

[Funkyfaerie]

Hi Fenty, Do you think you are having too much iron as that isn't good for you and can make you feel unwell. I'm not sure the Liver probs are connected to B12 def. Iron overload, however, could be a reason.

Rita

[fenty in reply to Funkyfaerie]

thanks for replying,thats what i was wondering about taking too much iron and maybe ? folic acid,ive arranged to have bloods done and am looking to get results as soon as is possible as youre right in that too much iron can make you feel ill,as for liver probs my consultant thinks it may be connected to my p.a but could more than likely be an issue apart from this,what i am going to do though is leave off the iron until i get the blood results back.lots of thanks.fenty.

[Funkyfaerie in reply to fenty]

Hi Fenty,

Keep us posted as to how you are, talking helps. I do hope that the doctors can sort it all out and you start to feel better very soon. Rita

[fenty in reply to Funkyfaerie]

thanks,will do that as although i dont post a lot i regard any replies/posts etc as a valuable source of information and comfort,the fact that theres a heck of a lot of us out there with all these related health problems that are taking the time to contribute and listen to how this illness affects us all,gives credit to this site,its a pity that for some unknown reason some g.ps and consultants seem not to take what we tell them seriously,after all its us that have to live each day with this debilitating illness,to be able get back to a normal day to day life will be absolutely fantastic,have had a few bad days as im sure most of us have more often than not but,but youre quite right in that talking is great therapy,especially when you know that others are feeling the same as yourself.many thanks.fenty.