help!!! Kind of in limbo with a diagnosis!

[Amyflood246]

hi! So sorry if this is a long one… so I’ve been experiencing symptoms of b12 deficiency since 2016. It started with cuts in the corners of my mouth and then gradually more symptoms appeared such as sore tongue, breathlessness, brain fog, forgetfulness, irritability, body is a dead weight, fatigue, bladder urgency, profusely sweating, aching muscles and joints, balance issues, pins and needles, muscle twitches etc…

I have been back and too to the GP over the years and my b12 result was always in range but only just about. The lowest it’s been is 190 and the highest 245 so the GP wouldn’t do anything. My folate is always low at like 2 unless I’m supplementing and my vit D and iron drops too! My instrinsic factor is negative and so is paretial cell antibody and MMA is normal. But from what I’ve been told all of these tests can be normal even if deficiency is present. the only thing the GP did was refer me to neurologist… the neurologist listened to my symptoms then tested all my reflexes with a hammer and said straight away I can tell you that you don’t have nerve problems and neither do you have ab12 deficiency because your reflexes in your ankle are working! He also said your serum b12 is in range so that confirms there is no deficiency… I pointed out that deficiency can still occur with normal serum b12 levels and he replied saying it’s very rare.

I ended up booking an appointment with a private Dr. His name is Dr Klein and he specialises in this field. I sent him all of my test results and told him all of my symptoms and he concluded that I definitely have pernicious anaemia and I need injections every other day along with folic acid daily and consuming potassium rich foods. He also said I needed an iron infusion but I can’t afford that at the moment. I started self injecting every other day about 3 months ago and so far I’ve noticed the cuts in the corners of my mouth healing and I have a little energy back. I know it’s still early days and it can take time. I am also following a vit D protocol and taking iron tablets. I have reduced my injections to once weekly until I get my iron levels up.

So my questions are-

who do I believe Dr Klein or the neurologist?

is it true that the reflexes in my ankles will be non existent or is it possible to have the deficiency and still have ankle reflexes?

is it definitely possible for all my blood results to come back normal and to still be deficient?

Is it right that Dr Klein has diagnosed pernicious anaemia even though my instrinsic factor is negative?

Also just to note I have stomach issues that aren’t currently diagnosed I’ve just been told it’s IBS but I’ve had a positive fecal occult blood and weak positive calprotectin test. My stool is always loose with undigested food and it’s very greasy and smelly. Sometimes leaves grease in the toilet. I have a lot of wind and acid reflux too. I am going to go back to the GP about all of this in the hopes of getting referred to a gastroenterologist. I’m thinking maybe absorption issues?

Thank you so so much for any help. I am totally at my wits end! X

[charks]

You definitely have a B12 deficiency and have had one for years. It may well be PA because the tests are very unreliable and give many false negatives.

The NHS medics you have seen haven't got a clue and have told you a load of old rubbish. You will get more help and correct advice on this forum.

A lot of your symptoms are B12 related and will get better with supplementation. I had a malabsorption issue and I am finding that is also slowly getting better. It is amazing how many things are connected to low levels of B12.

Like most of us I think you will have to self treat yourself. I don't understand why you have cut down on SI. It doesn't negatively affect B6 levels. I think you should restart your regime of SI every second day until you don't notice any more improvements in your symptoms. Or even SI every day.

[Amyflood246 in reply to charks]

hi! Thank you for replying. I was told to cut down to once a week until I get my iron levels up not b6 then once iron is up I can go back to every other day. What about what the neurologist said about the reflexes in my ankles is that true? X

[charks in reply to Amyflood246]

My understanding is that B12 is indirectly responsible for raising your blood iron level to keep it in a healthy range. Which is why so many of us with low B12 levels also have low iron levels. Doesn't make sense to stop it if you want to raise iron levels. Your neurologist is wrong about your ankle reflexes. For a start you don't have normal B12 levels. Even your highest level of 245 is low. Modern thinking is that the levels of B12 are set too low. The "normal" levels of B12 have been set at those levels necessary to prevent pernicious anaemia - this is not the same as those levels for optimal biochemical function. And as you get older you need higher levels of B12. Some medics specialising in the elderly think that the base level should be 500.

[Amyflood246 in reply to charks]

thank you, I’m only 32 though and this has been going on about 7 years so back then I would have only been 26! Can it happen when you’re young? And what you said about the levels that are set to prevent pernicious anaemia does that mean I’m not likely to have it because my levels are a bit higher? Is it more likely to be functional b12 deficiency? X

[charks in reply to Amyflood246]

No one knows very much about B12. Especially GPs!!!! And it is stupid setting levels that state for example that one person with a level of 179 has B12D and somone with a level of 180 hasn't and refusing that person treatment. Everyones body is different. One size doesn't fit all - some people can function well on very low levels.

I don't think it matters finding out what has caused your B12D. Some people on this forum have never found out why they are B12D. You just need to focus on getting better.

I wasn't anaemic but I have PA.

[Amyflood246 in reply to charks]

yes I agree there needs to be much more training done on b12 deficiency! Say on the off chance I wasn’t deficient and I was having every other day injections could it harm me in some way? Or can it harm the liver or kidneys? I’ve been told I need 5mg daily folic acid for life too! Is that even safe? X

[charks in reply to Amyflood246]

B12 is completely safe. You can't overdose. The folic acid dose seems high. It is OK in the short term but not for life. You can get nasty side effects. And there is a link between high folic levels and cancer.

[Amyflood246 in reply to charks]

don’t you need 5mg for as long as you are on every other day injections though? As soon I stop supplementing my folate falls right down to the bottom and that was before I started injecting x

[charks in reply to Amyflood246]

Low B12 can cause low folate. If you have low levels of both it is recommended to supplement first with B12 and this should raise folate as well.

[JaneChapple in reply to charks]

You should take folate as its the natural type as oppised to folic acid. If you have thyroid problems also many thyroid patients do not do well on the synthetic form.Leafy green veggies can help or otherwise you can uy folate on Amazon.

Janexxx😒❤

[J972 in reply to Amyflood246]

There’s no toxic dose of B12. Your body will excrete out what it doesn’t require.

[Amyflood246 in reply to J972]

what about having normal levels of MMA is that common? X

[J972 in reply to Amyflood246]

I’m sorry, I don’t know what MMA is, hopefully someone more ‘in the know’ will be along soon.

[Technoid]

"the neurologist listened to my symptoms then tested all my reflexes with a hammer and said straight away I can tell you that you don’t have nerve problems and neither do you have ab12 deficiency because your reflexes in your ankle are working!"

I had exactly the same experience with a "neurologist". Useless. The intention tremor in my hand they called "essential tremor". Nonsense.

Intention tremors commonly associated with excruciating pain as the nerves repair and you get more B12? Not last time I checked...

"Is it true that the reflexes in my ankles will be non existent or is it possible to have the deficiency and still have ankle reflexes? "

This neurologist hasnt a clue. B12 deficiencies manifest quite differently for everyone. Complete absence of ankle reflex would a final stage closer to paralysis. You can have a severe B12 deficiency with neurological damage but your reflexes do not need to be entirely dead for it to be considered serious. This is just madness. The myelin sheath that protects the nerves is lost in B12 deficiency. Areas that are used more heavily or more frequently used during the deficiency may lose myelin faster or have more difficulty replacing lost myelin. These areas incur the most damage , which often start with unusual sensations like pins and needles, unexplained hot or cold sensations unrelated to heat or cold in the environment etc. The brain situation is similar but instead with mental effects, mood, cognition, motivation, the whole operation of the mind is affected - myelin also protects the neurons of your brain....

You can have chronic serious nerve pain without getting to stage of losing a reflex entirely. That doesnt mean theres no deficiency, just that it hasnt progressed quite towards paralysis yet. Does this neurologist think we should wait for paralysis before a B12 deficiency is treated? Nerve damage is very difficult and slow to repair. Waiting may cause serious harm which cannot easily be corrected.

[Amyflood246 in reply to Technoid]

hi! Thank you for replying. So it is possible that I could have been deficient before 2016 and I still haven’t got major nerve damage?

What is your opinion on the pernicious anaemia diagnosis? Does it sound likely or could it more likely be an absorption issue? Also is it common to have normal antibodies and normal MMA and still be deficient? X

[Technoid in reply to Amyflood246]

A low-normal B12 and working ankle reflexes are no guarantee that you are not B12 deficient. There have been cases of paralysis with a serum B12 of 243. My B12 serum was 210, 2 years AFTER neurological damage started. My MMA was also normal. There is no gold standard, foolproof test for B12 deficiency and treatment needs to happen based on symptology. I dont have the clinical experience to know how rare a deficiency is with normal test numbers but it does happen, is attested to in clinical papers, and happened to a number of forum members including me. It might be hard for doctors to judge how rare it really is since they often will not treat with B12 when serum levels are not below official UK "norms", which differ from region to region so they might never uncover such cases since they are not treating them.

PA is best diagnosed via IFAB (intrinsic factor antibody). Injections can interfere with the validity of this test so you should try and get it before any injections start. PA causes an absorption issue due to the destruction of the intrinsic factor protein that B12 needs to be protected and transported and recognized at its absorption site in the intestine. There are other causes of B12 deficiency other than PA - many gut-based issues can cause it since B12 aborption is a complex process, stomach acid is very important too so can be affected by PPI's etc.

I am not medically trained.

[Amyflood246 in reply to Technoid]

thank you! Was your instrinsic factor test normal? X

[Technoid in reply to Amyflood246]

I never got one. Dietary deficiency 🙃.

[Nackapan]

The bit that confuses me is the MMA being within range. I thought that was raised if a b12 deficiency with in range b12 serum blood results.

You could get another Intrinsic antibody test.

Our chairman had 3 before ot was positive.

Bring referred to an gastroenterologist may help you.

Endoscopy??

Many neurologists do not understand b12 deficiency.

One did out of 3 in my experience.

Assumed PA .

Or IFAB neg b12 deficiency exists..

By having b12 injections.

Finding z maintenence of folic acid snd getting vit D and iron stabilised should be helping your symptoms.

Try a prebiotic

Or fodmap to find which foods you csn digest at present

Have you been tested for coeliac

Disease or tried a gluten Free diet

If the doctors are saying it isn' PA !! they shoujd be sending you for tests as you'd have so many symptoms .

Insist on this.

I have heard of this clinic.

An iron clinic.

As you say very expensive to sustain.

Have yoh been through all the possible causes for an absorbency problem on the PAS website.

Or Tracy witty ect?

What's been ruled out. ?

Hope the b12 injections have a good result.

Keep a diary

[Amyflood246 in reply to Nackapan]

hi! Thank you for replying. With the MMA I believ it can still be normal even with a b12 deficiency.

I’ve ruled out celiac

I’m not sure on chrons as I have recently done a fecal occult blood test and it was positive and I did a calprotectin test and I got a faint positive on that one so going to repeat in a couple of weeks and then go back to my GP and ask for a referral to gastro because as I’ve mention in my post my bowel movements are really not good so I was thinking malabsorption

All of the other causes other than what I’ve mention above I haven’t been able to rule out. My thyroid is fine apart from I have antibodies.

How did you get diagnosed if you don’t mind me asking? X

[Nackapan in reply to Amyflood246]

I had an initial serum b12 of 106 ( 200-900l when eventually tested ! Have no other diseases or on Amy medication.

After 2 brain scans one year apart.

Showing some abnormalities.

But ruled out 'anything sinister '

Their words .

A negative parietal cell antybody test.

One neurologist rhat tested my reflexes said they were too brisk??

My nervous system in over drive.

I have not a PA diagnosis .

'Aassumed PA '

Never had a IFAB test

I've slowly improved over 4 yests on regular b12 injections.

On a 2 weekly NHS prescription.

On no othef medication .

Do take iron on prescription.

And vit D

And a multuvit I buy .

Nothing else found to date

.

[Amyflood246 in reply to Nackapan]

that’s good that they give you 2 weekly injections! Do you not take magnesium and k2 with your vit D? X

[Nackapan in reply to Amyflood246]

Don't need magnesium.as supplement as blood test shows a very good level from food .Yes take k2 with vit D

[Amyflood246 in reply to Nackapan]

ahh that’s good then! X

[jamjar67 in reply to Amyflood246]

just jumping on here as I notice you say your thyroid is fine except you have antibodies, I’m presuming you mean raised antibodies?

If this is the case I think you should post your results (with ranges) on the Thyroid U.K. site as raised antibodies indicate autoimmune thyroditis (where the body gradually attacks the thyroid) I doubt your T3 would have been tested which is important as low T3 can also cause a lot of your symptoms.

[Amyflood246 in reply to jamjar67]

hi! I paid to get the test done so T3 was tested and all of my results were in range. I did post in a thyroid group and they said everything looked fine x

[lilymg]

What is your age?

[Amyflood246 in reply to lilymg]

I’m 32

X

[Pollyanna23]

I don’t know why it is but it seems some doctors are reluctant to giving out the B12 injections.My B12 injections were stopped during the pandemic, which I understood once you are put on them you have to stay on them for life.The fact I was given the supplement in tablet form of which I encountered side effects and to this day I have not been given any other form of B12 is quite unbelievable.I have bought up different symptoms over the past year to the doctor which I have been experiencing which definitely are symptoms of B12 deficiency yet I seemed to get ignored.I suffer with a continuous cold nose aching muscles and irritable leg syndrome and at present having to wait a month for a telephone Conversation with my doctor

[Amyflood246 in reply to Pollyanna23]

that’s so bad! They shouldn’t have even took you off them x

[WIZARD6787]

Follow this link for the best information that has been given to me regarding safety of B12

stichtingb12tekort.nl/engli...

[Amyflood246 in reply to WIZARD6787]

thank you I will take a look x

[Sleepybunny]

Apologies for a quick reply but busy with other things.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

I suggest you take a week or so to look through them so it's not so overwhelming. Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Link to thread about Patient Safety, has useful links for people who've had difficult health experiences.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Amyflood246 in reply to Sleepybunny]

hi! Thank you. I will take a look through the links. Have you heard of b12 deficiency being present in someone with normal MMA and normal instrinsic factor? X

[Sleepybunny in reply to Amyflood246]

Quick answer is yes.

Article on MMA (from Dutch B12 website)

stichtingb12tekort.nl/engli...

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines (UK document) which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Look at the lower right hand side of the flowchart.

It suggests that doctors should consider continuing treatment after normal results in secondary tests (such as MMA/Homocysteine/Holotranscobalamin) if patient has responded to treatment.

If I have time I'll add more later. Should be some useful info in threads I linked to in my other reply.

Many reasons for B12 deficiency besides PA.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

[Amyflood246 in reply to Sleepybunny]

thank you! I will have a look at these. Do you know whether b12 deficiency can cause POTS?

Also is it possible for the small fibre neuropathy caused by the deficiency to affect only the autonomic system and there not be any other symptoms of small finer neuropathy such as the usual pain and numbness etc in the feet legs and hands? X

[Sleepybunny in reply to Amyflood246]

If you have time, try search forum posts here for "POTS" .

I have come across research articles that suggest an association between POTS and low B12 levels.

Have you seen a neurologist?

Hopefully they could tell you more about small fibre neuropathy.

NHS article about peripheral neuropathy

nhs.uk/conditions/periphera...

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist

cks.nice.org.uk/topics/anae...

[briarhillcat]

Hello Amy. I am so sorry you have been suffering so much, and from what you have said about your symptoms and how you feel,I would agree with Dr, Klein. You definitely have pernicious anaemia! What on earth are the doctors doing these days? They do not seem to have a clue. I was diagnosed with pernicious anaemia back in the 1970s, and have to rely on injections to keep the symptoms at bay. You have been suffering long enough. Many people are recommended to take B12 tablets. These do NOT work, the intrinsic factor in the stomach does not work so you can take handfulls of tablets and your body just throws them out. Please do not hesitate. No matter what all the people tell you that you do not have pernicious anaemia because of this, and that etc. You do, and you need injectons to start to make you feel better. I am so sorry you have suffered so long. Good luck getting injections sorted out. When Covid struck, I had a letter saying that the body can store B12 for a year, so no need of injections. That is just rubbish. I started to self inject - I got my injections from Germany. But there are many different places if you look on the web. Good luck Amy.

[Amyflood246 in reply to briarhillcat]

hi! Thank you for replying. It’s so bad how these Drs don’t know anything about b12 deficiency! I’m thinking I have all sorts up with me and what if it’s not b12 even though I have all of the classic symptoms. I have already started self injecting. I started about 3 months ago but I know it can take time x

[briarhillcat]

Hi Amy. Well done, that is good news. Doctors everywhere seem unable to understand about pernicious anaemia. They just fob you off. It would be different if they had it! Take care,

[Amyflood246 in reply to briarhillcat]

Hi! Yes it would be very different if they had. Thank you! X