Functional B12 problem, advice wanted

[Uluru72]

Hi

Over the last 20 odd years I got very sick with lots of the typical PA symptoms. I was virtually housebound and incapable of any physical activity, with lots of neurological problems, muscle wasting, anemia etc. These were so pronounced that I received a preliminary (incorrect) diagnosis of motor neurone disease from a neurologist in 2020.

I started SI mid Feb this year, about 10 months ago. Since then I have experienced very significant health improvements and, at times, have been not too bad. Some problems I've had for as long as I can remember have either gone or are massively reduced. Seeing me after a few weeks of SI, my GP wrote me a script for SI based on my massive response to DIY SI. (I'm still DIY though, 1 1500 mcg hydroxocobalamin ampule PD.)

I started SI on the basis of symptoms. Prior to SI Serum b12, active b12, IF/parital cell antibody tests were normal.

From my normal B12 levels, lack of antibodies etc., I suspect that I have some type of functional B12 problem, though I know that none of these tests are perfect.

Is there any other specific treatment option for a functional B12 problem, other than just frequent B12 SI? I'm much better than I was prior to SI, but I'm still very limited in what I can do.

I would very much like to bottom out my condition, to find out whether other therapies might be helpful, perhaps to see whether I might have some other problem too.

I have had loads of tests to exclude things like thyroid function, MS, MND, lots of tests of gut status and vitamin levels etc. All fairly unexceptional.

I would welcome any advice specific to a functional B12 problem and any recommendations for a private doctor or clinic with a handle on functional B12 problems, I understand that this would have to be by PM.

Regards and thanks

Simon, age 51 and a half.

[wedgewood]

The fact that you tested negative for Intrinsic factor antibodies does NOT mean that you don’t have them . It means that they were not detected at the time you had the test . About 50% of Pernicious Anaemia patients test negative . If tested often enough , they would eventually test positive . Many doctors do not know this fact unfortunately.

No there is no specific treatment for functional B12 problems . We are very much on our own with B12 deficiency/ Pernicious Anaemia . There is no private doctor or clinic in U.K. for B12 /PA There is such a clinic in Holland .

If you have had untreated B12 deficiency/ P.A. for many years , it is very possible that you can be left with some irreversible symptoms .

Sorry that I don’t know the details about the B12 clinic in Holland , but could find out with a bit of searching on the internet .

Keep on injecting. You cannot overdose on B12 Hope that you take a modest 400 folic acid tablet daily ( the strength that pregnant women take ) It works with B12

Best wishes.

Just google “ B12 clinic in Rotterdam” and you will get information in English .

[Cherylclaire Forum Support in reply to wedgewood]

Hi wedgewood : regarding functional B12 deficiency:

In early 2020, the Adult Inherited Metabolic Diseases people, mentioned by Bookish above, told me that, for patients found to have identifiable MMA problems in DNA samples, they advise their GP to administer B12 injections twice a week. They get very disheartened to see some of those patients later return, in worse condition, because their GPs had seen fit to ignore this vital treatment regime.

Although they were unable to find any hereditary cause for me in DNA (for which they actually apologised), I still find that self injecting about twice a week generally keeps my symptoms under control.

But that's just me.

[MrsTuft]

just keep self treating - it can take years to recover. X

[GoneWithTheWind1972 in reply to MrsTuft]

if you’re in Australia, there isn’t any type of specialist who can deal directly with this either but, firmly believe it’s a gastroenterologist’s expertise as they’re in charge of all gut related conditions and to inform their patients about healing gut health. In reality it’s wishful thinking. We are on our own to deal with ignorant doctors so, we take charge of our own health and continue to self treat with B12 the best we can. Maybe one day medicine will change and better understand the significance of correct B12 treatment.

My Christmas blessings to all on this forum, may we anticipate a better world in 2024.

A big hug to all from down under.🎄🤶🙏🩷

[bookish]

Have you had homocysteine and MMA checked, although they too are not conclusive. You could ask for a referral to Adult Inherited Metabolic Diseases to look for genetic causes - although personally they have not been much help to me, I know some have found them useful. B12 metabolism is strongly genetic and there are a lot of genes known to be involved (but also several polymorphisms which there is less info about). You may find this interesting bmj.com/content/383/bmj-202...

[Uluru72 in reply to bookish]

I'm pretty sure that my dad had the same issue as me, whatever that is, very similar symptoms. It killed him, never diagnosed.

[bookish in reply to Uluru72]

I'm sorry to hear that. My mum was never diagnosed either. I am the fifth of six known generations on Dad's side. Testing has so many holes in it and a lot is simply not yet known. The CluB12 team hopefully will find out more. Best wishes

[MorningMist in reply to Uluru72]

My mother too had many undiagnosed issues all her life - notably depression and bouts of exhaustion. I am now sure it was b12 deficiency. She often bought b vitamins and brewers yeast, saying how they made feel more energised. She died after a slow decline, virtually unable to walk and not having the strength to speak even.

[Uluru72 in reply to MorningMist]

I almost got there. Wasted away, too weak to swallow solid food.

[EllaNore]

Hello Uluru72,

If you started treating yourself with B12 injections before you got your IFAB tests and other tests, it would very much cause your IFAB test to be inaccurate.

Over the last 2 years I have had every test. There is for everything all the way down to my blood vessels, I was given a Romberg's test that I failed Just a few weeks ago. Like you, I went 4 decades with out knowing what was wrong with me. I had some pretty severe symptoms. In past 2 years they have really improved a lot. But I still have what I call crashes.

Where my body just completely stops functioning like it should. And I was in bed for the last 6 weeks until a few days ago. There was no reason for it. I couldn't figure out what I might have done. Except for a had a Margarita to celebrate my birthday. And that, I feel, may be what caused me to crash. I don't drink usually never have, but others were having a drink and it looked good so I thought I would have one, never again. I paid for it.

The only treatment for everything. That's wrong with me from PA to subacute combined degeneration, to peripheral neuropathy is B12.

There is nothing they can do for any of it. And all they want to do is give me one injection a month. So I treat myself by injecting B12 everyday. Often twice a day. I used to hike in Sierra mountains with a 50 pound camera bag on my back. I can hardly walk to the corner or walk around a shopping mall or a grocery store. Even opening a jar is so hard for me. I lost 60% of my strength.

But it's only been 2 years since I've been treating myself. And I just recently went to 2 times a day. So im hoping that I might improve a little bit more. But I, at this point, don't think so. I think this is good as I'm gonna get, but I will stay hopeful and continue treating myself and if I get better, great. If not, I'm grateful that I'm as good as I am.

So, more B12. You can't OD. You only use an estimated 1.8% of the B12 that's injected and the rest gets peed out.

That 1.8% doesn't last very long in your body.

Good luck.

[Uluru72 in reply to EllaNore]

Thank you. I was once very active too. I'm catching up on a lifetime of TV; I didn't miss much. I'm going to increase the frequency of SI and not worry too much about a precise diagnosis, whether it's a functional metabolic problem or an absorption problem, the answer seems to be the same, treatment wise.

[EllaNore in reply to Uluru72]

Yes, b12 is the only treatment for all of it. Good luck. It can't hurt to try more and see if that helps.

[EllaNore in reply to Uluru72]

Haha yes I have seen things on TV I never saw before. I watch a lot of watercolour painting tutorials on YouTube! I find painting therapeutic. Even if it's not great.

[Nackapan in reply to EllaNore]

I'm quite addicted now.I couldnt watch it for 3 yesrs.

My head couldnt cope .

Nausea

Head pains then balance went .

I was visually setting off symptoms.

5 yesrs in watch all sorts of rubbish.

Also can now write letters.

Not uo to reading a book yet .

So progress happens. For me very slowly but still progress can happen.

[EllaNore in reply to Nackapan]

I completely understand Nackapan. I'm so glad you can do some of the things you couldn't for so long. Reading and writing by hand is hard for me. Takes me forever to respond to letters, texts and emails by typing but writing is terrible. My penmanship is terrible now.

[Gambit62 Administrator]

Please note that strictly speaking functional B12 deficiency is all the symptoms of B12 deficiency in the presence of raised B12 levels - generally significantly raised B12 levels. More likely its a problem with interpreting the normal range - which is where 90% of people are okay but that doesn't mean that someone in that range is okay as people vary significantly in what is the right level for them.

[Cherylclaire Forum Support]

In case you are unsure of how serum MMA being raised can indicate either B12 deficiency or, if injections given, a functional issue:

Have a look at my reply to Betwelvepatient 's post today, asking for interpretation of blood test results.