B12 sky high!

[Gill567]

Thoughts anyone please? Years ago back in the uk I was found to be b12 deficient and put on injections which they said would probably be for life. I moved here to France and the doc here said they didn't give injections here as old fashioned. He sent me for a blood test which came back normal but I had been having my injections in the uk so I suppose that was to be expected. Anyway that was that and told no treatment needed. A good few years later I started getting some symptoms and was veggie and then vegan so I started taking just a multi vitamin (Asda) every day. A good while later after mentioning these symptoms the doc sent me for another blood test and it came back at over 2,600. He told me to stop taking the multi vitamin and referred me to s specialist because I was convinced I was deficient even though my level was so high. Specialist was convinced the problem was the multi vitamins and I was told to stop them but he he did find out I had Sjogrens Syndrome which he said would account for the symptoms I'd been having. Not too convinced I researched & ended up having an MMA blood test done which came back as 0.8 - slightly high and they mentioned b12 deficiency? Because of this the doc put me back on injections which I've been having (1 a month) since 2017. Doc has now retired and new doc sent me for a blood test which has come back as b12 just over 3000!! and this was 2 weeks after my last injection. My creatinine and my potassium are also at the upper range. I have to go back to see her on Sat and really haven't a clue what she is going to say but I can guess. I'm sorry for the long story but I just wondered if anyone had such a high level 2 weeks after an injection. I've read that you get rid of what you don't need in your urine but if so how come my level is so high. Thank you for reading and very grateful for any help.

[Foggyme Administrator]

A B12 level over 3000 two weeks after an injections is to be expected and nothing to be concerned about.

Sjögren’s syndrome is an autoimmune condition so just wondering if your GP has done a full autoimmune screen? Your symptoms could be due to Sjogrens and possibly another undiagnosed autoimmune condition (Sjogrens syndrome can occur simultaneously with other autoimmune conditions).

In my case, my symptoms of B12 deficiency returned four years after commencing treatment and (to cut a log story short) I was eventually diagnosed with Sjogrens and Lupus. Not, of course, suggesting you have lupus, but there are many autoimmune conditions that can cause symptoms similar to B12 deficiency and once you have one autoimmune condition, then others may occur (they tend to arrive in clusters). So worth pursuing, especially if symptoms persist now that you’re back on B12 injections.

Suggest that in view of the sjogrens diagnosis and symptoms, referral to a rheumatologist for further investigations may be a good idea (they can do tests that GP's don't usually have access to).

Also worth noting that I still have B12 deficiency and my rheumatologist has said that it’s very important to continue with the B12 injections - irrespective of B12 levels (these are meaningless once injections have been commenced, are not indicative of B12 deficiency status, and injections should be continued. Also - no need to test B12 levels once injections have commenced, since levels will (should) always be high - very often way over the top of the measurable scale - and this is no indication that injections should be stopped.

If you have PA / B12 deficiency it’s important that you continue with the injections - especially if they help with symptoms and symptoms return if you stop the B12. Those with underlying autoimmune conditions often suffer from B12 deficiency though it’s not always known why. In the case of Sjogrens, lack of saliva often means that dietary B12 cannot be broken down properly for absorption via the GI tract (one good reason why your GP should not stop injections - and there are others - if that is what they try to do).

Good luck. Be interested to hear how you get on.

[Gill567 in reply to Foggyme]

Thanks so much for your reply. I really am stressing about going back on Sat as I had an absolute nightmare getting them to start me on injections and that included the specialist I was sent to who just told me to stop the multi vitamins but did diagnose the Sjogrens. The new doc did say she was checking my thyroid because she said Sjogrens comes from the thyroid but I didn't quite get what she meant by that. I must admit my heart missed a beat when she said she was checking my b12 level coz could see what that might lead to with all the hassle I'd gone through before. Not sure if she has tested for any thing else including Lupus. How do they test for that please? Is it just a blood test? I have also got a bit of Psoriasis so I hope I'm not heading for the box set. I will let you know how I get on on Sat.

[Foggyme Administrator in reply to Gill567]

So hmm...those with Sjogrens are more likely to suffer with thyroid disease - but that’s a very different matter from Sjogrens coming from the thyroid (it doesn't). It’s an autoimmune condition in its own right and can go beyond sica (dry eyes and mouth) - it’s a systemic disease, the severity and impact presenting differently in each individual. Some must get the dryness (sica) but others also get systemic symptoms too.

Here's a couple of links with more information:

sjogrenssyndromenews.com/20...

bssa.uk.net

But nevertheless good to get thyroid checked because thyroid issues can also cause B12 deficiency like symptoms. If thyroid issues are found this cannot rule out other autoimmune conditions - many with AI conditions also have thyroid issues.

Lupus (or any AI condition) is often very difficult to diagnose - mean average for diagnosis is 7- 10 years (it took 34 years for me to get a diagnosis 😱). First place to start would be to ask your GP to check antibodies (a blood test). ANA is often raised in those with autoimmune conditions - but not always! And a raised ANA cannot diagnoses any specific medical condition - it just shows that something is,going on in the autoimmune department. Further more complex blood tests would need to be done by a rheumatologist - and as you have sjogrens, on that basis, asking for a referral for further investigations would not be unreasonable (a rheumatologist usually cares for those with Sjogrens).

Just wondering what specialist you saw, how they diagnosed your sjogrens, and if you’re still being seen by them? Whatever, very worth checking for other underlying autoimmune conditions since they do come in clusters (psoriasis is also one and may be indicative of other underlying AI conditions too).

Have to say from personal experience - be prepared to be determined! You know your own body and know when something is wrong. So keep pressing for the investigations and care you deserve (and I say that knowing how difficult it can be to do that).

Very best of luck x

[Gill567 in reply to Foggyme]

The specialist was a rheumatologist in fact a professor although you wouldn't have thought so with what he knew about B12. Just checked back and it was an antibodies blood test . It's French so might be a bit different but Ac Anti-SSA was 260 & Ac Anti-SSB was 62 both should have been less than 20 to be negative. It says FACTEUR RHUMATOIDE (group 2) - 39 which should have been less than 30. Not looking forward to all that hassle again believe me if it comes to it. It's being strong enough to cope with it all & argue with them isn't it especially when you're not 100%.

[Foggyme Administrator in reply to Gill567]

Ah ha...a rheumatologist! Raised rheumatoid factor can be indicative of rheumatoid arthritis.

Anti-SSA and Anti-SSB can be associated with quite a few other underlying autoimmune conditions (including lupus), not just Sjogrens.

Here's more information:

uptodate.com/contents/the-a...

In view of ongoing symptoms and positive antibodies, think I'd want to be seen by a rheumatologist again (good idea to take printouts of your results - your evidence. And hope your GP is aware of these - though worth saying that most GP's have little understanding of AI conditions, unless you’re very lucky 😬).

Unfortunatley, there are good rheumy’s...and not so good rheumy’s, so perhaps a different one this time? Surprising that you seem to have been discharged without much in terms of further investigations, treatment, or even advice! Most rheumatologist seem to be okay at RA and Polymyalgia rheumatica, but not much good at anything more complex (and many AI conditions are extremely complex).

I agree - it’s so difficult having to advocate for yourself - especially when nobody appears to be listening! It’s not much comfort but just know that you are not alone in this - many have to fight until they eventually get a diagnosis and decent medical care. So please don’t give up.

A good place to look for advice and support for AI conditions is the LupusUk forum here on HU:

healthunlocked.com/lupusuk

You don’t have to have lupus to belong to the forum. Folks there have a huge range of autoimmune conditions so they are very knowable and supportive. Many have had, or are having, atrocious diagnostic journeys so will know exactly what you are going through, support you...and make you feel 'normal' (it’s all in the head told to so many people - not unlike for those with B12 deficiency).

As I say, please don’t given up...take a break to collect yourself and then...onwards 🙂. You owe it to yourself to be as well as you can be and you deserve appropriate medical care.

xx

[Gill567 in reply to Foggyme]

Oh well I knew it! Just got back from the doctors and she's taken me off my injections. I showed her all my papers inc. the letter from the specialist in the uk when I was diagnosed saying I would need injections for life but all to no avail. She just kept repeating that my level was very high at over 3000 so no more injections well not for now anyway. I've got to go back in 2 months and she will send me for another blood test but I know I will still be too high because it took a good year for my levels to come down last time to their normal the last time this all erupted. I tried & tried my hardest to explain but she just wouldn't take any notice. Too high a level so need to stop them! I said can I come back if/when all my symptoms come back and she said yes but at a level of 3000 now it wont be a b12 problem, it will be the Sjogren's Syndrome. I give up! Just what the hell do you do? I could cry to be honest coz I went though all the shit last time and had murder getting them to do the MMA test and to agree to injections. Had enough!!!