B12 deficiency

[janekins]

Had a letter today from Guy's hospital with my recent blood test results. Apparently I have a B12 deficiency. My IgG is also double the upper limit (0.0 - 20.0 SGU) at 40.6. Can anyone explain these figures and what they represent to me in layman's terms please.

Many thanks.

Jane x

[anniesensi]

Hi there.

I can answer the B12, but only from my own experience.

I have Multiple Sclerosis (9 yrs) and at the end of last year I was diagnosed at St Thomas' with Anti-Phospholipid Syndrome and Lupus "Like" Syndrome.

I too am B12 deficient, and also folate deficient. In my case, this led to a diagnosis of pernicious anaemia - which is also auto immune.

In MY case, the B12 and the Folate deficiency seem to go as one.

Usually, in young people, as I understand it it is rare to be deficient in folate or B12. They are both "B" vitamins. In the western world where we have good nutrition most people's bodies store enough vitamin B12 for four years. So it's rare to have this from a poor diet.

The treatment is very easy, and it will make you feel a LOT better. I have folic acid every morning, in a pill, and B12 injections every 2 months. If you are happy to do so, most clinics will allow you to administer the B12 yourself.

I promise you, it's no big deal, as long as your B12 deficiency is sorted out you will feel SO MUCH BETTER!

24 hours after my first B12 I honestly felt like I had been given the breath of life.

I am told that being deficient is dangerous because B12 protects the myelin sheath, and neuro transmitters.

I hope that helps somewhat.

[janekins in reply to anniesensi]

Hi Anniesensi

Thanks for your reply. It was full of useful information and I'm particularly pleased that it should make me feel better. I had hoped there would be improvement when I went on hydroxychloroquine in July but as it hasn't, it may be because of the B12 deficiency. My folate reading is in the correct range.

I've actually put in for early retirement because I have been continually ill during this last year, I'm 55.

You seem to having to cope with many illnesses and are obviously young. I hope that you continue to keep on top of things. You sound like a strong person.

Thanks again for giving an 'oldie' some help!!

Take care

Jane x

[anniesensi in reply to janekins]

Hi Jane,

I'm glad to have been of help!

I am also on Hydroxychloroquine, and I can't say it's making me feel better - But then I probably wouldn't know! The B12 is dramatic though!

Yes, I have been through a lot.

When I was 35 I had a massive stroke which was untreated my my local hospital, as they assumed wrongly that it was "just an MS relapse" That put me into a wheelchair.

Then, last October (2011) I had a fall from my chair. It was nothing. But, 2 days later I was in Kings having an embolism removed from my leg. I had several more ischemic episodes, then multiple PE's. I was then diagnosed with APS. A brain scan then showed the stroke. I had a TIA when my INR dropped to 2.5 recently.

Then came the diagnosis of the Lupus 'Like' syndrome, and Pernicious anaemia...

I've had to be strong, as I have three daughters. Thank god I had them young before my health was bad. I'm now 37, and I do get very upset. I suppose I've also gone into retirement! ... I have had to give up my degree in Photography because part of the MS that really affects me is severe Dystonia.

The 40 odd pills I take each day don't make me well...

But, life goes on, it has to. It's not the life I expected, but it's the life I have.

And the B12 is really manageable, really good to have the diagnosis because, as I say, the day after the first injection is like being given something back again!

Have a wonderful Christmas

xxx

[GinaD]

My IgG has been that high. The IgG is a measure of how active your immune systems is. The various subsets of these rheumatological blood tests are clues as to whether or not a patient has this or that autoimmune disease. Of course, we want our immune system to be active, when appropriate, so often such tests will yield a "false positive.". Which is why a review of symptoms and follow up tests spread out over time is often warranted.

I had, and still have, APLS. My cardiolipin antibody IgG remains strongly positive, but that number fell dramatically and my my energy level soared when it was found I had Celiac-- a food allergy to gluten( which is a protein found in wheat, barley and the food additive MSG.).

I have never had my B12 measured, but low B levels often accompany autoimmunity, and especially food allergy issues.

Did your doctor recommend follow up tests? Do you have any symptoms? Have you explored the possibility of a food allergy? ( the usual suspects are: gluten (from wheat,etc.) ,) dairy, red wine, soy, peanuts or nuts.).

Hope this helps.

And just to reassure you from unnecessary worry, a hig IgG # could only mean you are recovering from some random virus or such that you may never have known you had. So, one high reading is usually significant within the context of symptoms.

Gina

[janekins in reply to GinaD]

Hi Gina

I haven't been tested for any food allergies. I now have to see my GP about the B12 deficiency as well as short term steroids that have been recommended by Guy's doc just to see if it makes me feel better. It's only a 2 week course as I have osteoporosis. Although as I mentioned in my reply to Anniesensi above, Im now wondering whether the B12 deficiency might be the answer to why I dont seem to be feeling better. I will therefore also ask her about food allergies as well.

My IgG test has been high on each of the 3 occasions that it has been tested this year. Do you think I may have just picked up lots of viruses that have kept it high?

Thanks for your reply

Jane x

[GinaD]

Well, I'm no doc, but if the high readings are consistent over time then that does sound significant.

Celiac, and other food allergies can cause all sorts of nutritional deficiencies. ( forgive me if I'm repeating something you already know here,) but food allergies prompt a condition called, ( yes, this is the real term for it,) " leaky gut syndrome.". The celia in the small intestine become inflamed and there appear gaps in the gut. Into these gaps leak stuff which shouldn't be there, which prompts more immune response, and escalating inflammation, while stuff which should be broken down and absorbed - isn't.

The stuff which is not properly absorbed is the stuff which is supposed to be absorbed by the now diseased small intestine. Which includes the larger molecules,( the B, and the As,) as well as iron and calcium, ( which is why osteoporosis and anemia and B deficiencies are often found in Celiacs.)

I found I had Celiac by accident. I'm not sure where you're from, but over here in the States , Celiac is considered rare--despite effecting about 2% of the population, ( which means, of course, in a random crowd of 100 people 2people will have it.). A friend kept urging me to try the Adkins Diet as an attempt to combat my profound fatigue. I already had APLS so I asked my doctor what she thought about what I at the time thought was a hare-brained theory. To my astonishment my doc thought I should give the Atkins diet a whirl and we agreed to get an extra blood test that week in case the dietary change was effecting my INR ( I was, and am, on warfarin.)

So day 1--I do not eat my usual bagel with breakfast but stick to eggs and oranges. I went hiking with my daughter, and though we planned to do only 1.5 miles due to my recent fatigue, I changed that to 5 -- and felt fine! And I stayed up to 10 that night instead of my usual 8 and did not nap at all!

Next day I drove my daughter to the airport for her early flight back to school,but had so much energy when I got home I cleaned the house, top to bottom and then loaded up my bike, went back to Kanawha State Forest and rode to the top of Lens Creek Mountain and back. And up until 10 again, still no naps.

By day 3 of the diet I reasoned this phenomenal improvement could not possibly be due to the Atkins Diet. I sat myself down with the Internet and a book on autoimmunity and concluded I mist have Celiac.

I phoned my doctor. The nurses fetched has as she had left instructions that she was eager to hear how the diet was working. I recounted my amazing improvement over just 3 days and then I quietly asked, " Could I have Celiac.". She excitedly shouted her answer, " Of course you have Celiac! You have all the symptoms! ". "then why am I diagnosing myself?" I timidly responded. " we can't treat it so we never think of it!"

Subsequent blood tests specifically for a celiac were negative. But all my Ig factors plummeted from astronomical highs to normal, excepting the cardiolipin IgG, (which was still cut in half,) AND I was found to NOT be anemic for the first time since age 3, AND I went from osteopenia to a very good bone density within 6 months so that every doc I have is sure I have Celiac. ( Celiac blod tests sometimes give a false negative if the patient is already on a gluten free diet, which I was)

So based on my experience I willl venture out onto the I'm-not-a-doctor-but-a-housewife-

from-West-Virginia limb and suggest you consider a food allergy such as Celiac. Especially if you are from The States where docs are more motivated to diagnose diseases the pharm Industry can profit from.( I'm not saying this diagnostic gap is intentional on the docs part, just that their lives are filled with info about this or ta treatment fo this or that ailment. And the only treatment for celiac is avoidance.)

Good luck.

[janekins in reply to GinaD]

Wow that's amazing that your energy levels improved so much!!! Just reading what you managed to do is exhausting! !!

I know nothing about celiac disease and I do now thanks to you. So this is another thing I must ask my gp about, particularly as I have osteoporosis and high IgG.

Btw, I'm from plymouth in England.

Thanks for taking the time to reply Gina.

Best wishes

Jane x

[Maddie in reply to janekins]

If you are going to ask your GP to test you for coeliac disease then you will find the info from Coeliac UK very helpful. Click on this link for advice about how to prepare for the blood test, it will help you to get a more accurate result;

tinyurl.com/628cxox

[GinaD]

Merry Christmas!