new on her e

[Lucieb01]

I came over from thyroid to ask about my b12 which is L136 / range is<140 could someone plz advice x

[CarpaBob]

Hi, you need to ask your gp to treat your b12. I see in another post you mention having gut problems and taking ppi's so I would think injections are what you need. I am early in my b12 journey and aren't as knowledgeable as others on here, who I am sure will be able to give you more info but I will try and find some links for you.

[CarpaBob in reply to CarpaBob]

Make a list of your symptoms and then group them depending on whether they fall in the b12 deficiency, vitamin d deficiency and the low ferritin, that way you can show the doctor.

healthunlocked.com/api/redi...

[CarpaBob in reply to CarpaBob]

Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders - The British Committee for Standards in Haematology

bcshguidelines.com › documents

cks.nice.org.uk/anaemia-b12...

Hope this helps 😀

[Gambit62 Administrator]

Looking at the post on TUK you definitely have a lot going on.

Is your diabetes type 2 and are you on metformin - another drug that is known to suppress B12 absorption.

There is a lot of overlap between symptoms of B12 deficiency, thyroid, D deficiency and diabetes so unravelling what is happening is likely to be extremely difficult - and you really need to be treated for all. Your folate levels aren't brilliant so you probably need to supplement that as well otherwise the risk is that you become folate deficient processing your B12 and once the folate runs out you won't be able to process any more B12.

this is a link to the symptoms of B12 deficiency

pernicious-anaemia-society....

You will almost definitely need to have further blood tests done - eg to establish if you have any anaemia - macrocytic anaemia is a common side-effect of a B12 deficiency. Unfortunately GPs have a tendency to think that it is the cause of the symptoms and a defining characteristic but it isn't and significant numbers of people present with neurological symptoms before they present with anaemia, so if your GP starts telling you that the B12 was caught early because you don't have signs of macrocytosis its a sign that your GP doesn't really know much about B12.

Please also be aware that the tests for PA as a cause - includes IFA - are notoriously inaccurate so a negative result wouldn't necessarily mean that you don't have PA.

Might be good to ask for a referral to a gastro to check what is happening in your gut.

You may want to print of these materials to give to your GP in relation to the B12 problems - put together by another member of this forum

frankhollis.com/temp/Summar...

and you may also want to point your GP at the PAS website - there's a section for medics aimed at helping them to understand PA and B12 deficiency better.

pernicious-anaemia-society....

Think the main thing to stress is that you obviously have a lot going on and it is important that your GP doesn't focus on just one issue - eg thyroid or diabetes - because they are more familiar with it. You need thyroid, B12 and vit D all treated as a matter of urgency.

[Lucieb01 in reply to Gambit62]

To see gp 11.30am today and I will post to let you's know what happens I can't thank you's enough you all should put a price on your info its amazing

[wedgewood]

Dear luciebO1

Your B12 is low . You need immediate treatment. If you are taking Metformin or an acid reducing preparation , or a PPI like omozeprole , your absorbtion of B12 is being blocked . It's possible that you have Pernicioua Anaemia . First you need to have the test for the antibodies to the Intrinsic Factor . This test is about 50 % accurate . You can still have PA even if the test is negative . PA brings with it low or no stomach acid ( Hypochlorhydria or Achlorhydria ) The NHS has no treatment for this , but there are natural treatments for the bloating burping and pain that this brings . I used a water based probiotic called Symprove to improve the flora of my stomach which is disrupted by the lack of acid . Also diluted drinks made with organic raw cider vinegar with mother ( Amazon , health food shop) Better still and cheaper is organic raw sauerkraut( health food shop , Amazon, or make your own , Google for recipe ) Some people have to resort to taking hydrochloric acid betaine with pepsin capsules at meal times (Amazon , .Google for info) Read as much info . as possible about gut health . You will need our support through this . So get in touch when you need it. Remember , doctors are ignorant about PA and B12, deficiency . That's why Martyn Hooper founded PAS . There are some very knowledgeable people on this forum , who are also willing to help you through this . They can quote you chapter and verse on scientific papers that will help you . I'm not so knowledgeable , but you have my support . Best of luck !

[clivealive Forum Support]

Hi Lucieb01 Welcome. If your GP starts you on B12 injections please ask him to check your Folate level as the two work together.

I wish you well.

[MariLiz]

Hi Lucie, that is a low level of B12, I hope your doctor is starting you on injections? Like you I have underactive thyroid and am on a PPI for stomach problems. The PPI will definitely have lowered your B12, and it maybe the stomach problems are also a reason it has fallen. My level was 176 when treatment began. Hope you feel better soon. MariLiz

[CarpaBob]

Yes they do ignore them, I gave them to my gp but he wasn't interested. I have asked for a referral (to haematology in my case) and written a formal letter with list of my symptoms to my gp and asked for it to be recorded on my file. My next step is a complaint to NHS England.

[clivealive Forum Support]

Hi Hidden I'm not medically qualified and am sorry to read that you are having difficulty getting treatment.

Are you a member of the Pernicious Anaemia Society? Maybe they can intervene on your behalf although your doctor seems to be somewhat intransigent.

I wish you well.