Vitamin B12 deficiency

[NanaFifi]

Hi guys,

Anyone suffer from a vitamin B12 deficiency? After my regular blood test results my GP wants me to have a blood test to check my vitamin B12. I'm wondering if it could be linked to methotrexate?

Fifi x

[Gigi71]

Hi Nanafifi. I have been taking b12 injections for the last 4 years after a blood test showed up this deficiency. I wasn't on Mtx then, many drugs including Azathioprine for RA, only just started Mtx. So not sure what triggered this off. Feel so much better for the injection, they are given every 3 months and I feel very tired just before they are due. I not sure if it's the illness or side effects of all the powerful drugs. Hopefully someone on here has more information, but will be asking my rheumatoid nurse when I see her in two weeks. Incidentally my anaemia has improved a great deal since having b12.

[NanaFifi in reply to Gigi71]

Thanks Gigi71, I have been very tired lately and a bit mentally "off", I've actually been a bit worried that it might be early onset Alzheimers!! My mum was diagnosed with Pernecious Anaemia and had the B12 injections then shortly after that she developed Alzheimers. Fingers crossed there's no connection!

[Gigi71 in reply to NanaFifi]

Just to add the blood test I had was part of a more in depth look into why I was getting so many bouts of anaemia and my dread of keep taking iron tabs, they were considering iron infusions. I have had RA for 31 years and was originally dx with lupus, a resent blood test showed I no longer have the factor. Being 71 I often get days when my memory could be a be better!!! Kai's reply has been very helpful. All best wishes to you. I am taking my granddaughters age 17 and 15 to lunch, so looking forward to it.

[NanaFifi in reply to Gigi71]

I was the same Gigi71 , diagnosed when I was 21 with Lupus but rheumatoid factor didn't show in my blood tests till a few years ago and it was blatantly obvious that I had RA!

My lupus had been quiet for a long time until last year when I lost my mum then both flared up and are now just settling down.

It's difficult to know what is causing symptoms - is it lupus? Is it RA? Is it my thyroid?

Thanks for sharing and I hope you had a lovely lunch with your granddaughters.

[Gigi71 in reply to NanaFifi]

Oh my goodness Nanafifi you were so young. But can you believe I have a thyroid condition, dx when I was in my middle thirties called Hashimoto's and when I was 40 I was dx with lupus, RA was not considered a real problem either. I have erosive RA negative according to my latest copy letter to my doctor. We seem to have simalia experience's. I also have osteoporosis, glaucoma and hiatus hernia, which I believe to be medicine induced, which I hope you haven't. I hope if you are Dx with b12 deficiency, you get the same benefits as I have had with the treatment. I had a wonderful time with my granddaughter's and my eldest granddaughter's boyfriend. Thank you for your kind wishes.

[nomoreheels]

Hiya Fifi. Possibly, though it depends on how much under you are. Are you still only on the one 5mg weekly folic acid? If so it might be worth questioning if you're not replacing enough lost by the MTX if you're only just under. Other meds can also deplete B12 though, some diabetes meds, ppi's & long-term antibiotics to name a few. Vegetarians & vegans can also be susceptible, it can be age related too & one to think about.... Lupus sufferers are susceptible to B12 deficiency. Definitely something to discuss if the test shows your levels are low. x

[NanaFifi in reply to nomoreheels]

Hi nomoreheels,

Yes, still on 5mg folic acid per week; eat a balanced diet including fish; chicken and red meat but I do have Lupus . . . . . ? The plot thickens . . . .

Thanks for replying. x

[medway-lady]

I do and no mine is not its down to MTX, but an auto immune condition called Pernicious Aneamia and something called the intrinsic factor. It may be coincidence but its easily treated so don't worry people used to die of it but now they don't. It could be just another phase of the Auto Immune conditions that go with RA. If its not its just tablets so if offered go for the jab, quick works well and one less pill to take a day.lol

I had a loading dose then its a 10 weekly jab. B12 is stored in the liver and also affects hair, energy levels and makes some people depressed. So easy to treat though be glad your doctor is on the wall its a rare condition so not tested for routinely. It was my RA consultant found mine and the Haemotologist as well who got involved as I'd have embolisms another factor in RA is clots which I why I get so cross when people say that diet can change inflammation alone, it might but RA is not just about inflammation it has other facets so talk to your doctor or the NRAS who have loads of good information.

[NanaFifi in reply to medway-lady]

Thank you medway-lady, I didn't realise Pernecious Anaemia was an autoimmune disorder and as I have both RA and Lupus sounds like you may be right and its another phase. x

[earthwitch in reply to NanaFifi]

Coeliac disease is also an autoimmune disease and untreated coeliac is a very common cause of low B12 (malabsorption problems).

[Hidden]

My vit B12 is low too. I've had to reintoduce meat into my diet, after being a veagan for about 15 years. For me, it was the only way I could keep up my B12 without geting the B12 shots. This all happened a couple of years before my RA diagnosis.

[Desdmona]

I don't have that problem. I think I know why and it might help you too. I eat at least four bowls of cream of wheat each week. It helps keep my iron and energy up. Its low cal and you can jazz it up with a bit of honey for some pure raw energy. I haven't eaten red meat for almost nine years. I have diverticulitis as well so my diet is restrictive. I do eat peanut butter, cream of wheat, 2% greek yougart with protein granola. I eat a lot of wild caught salmon or flounder. Turkey meat for a meatloaf and chicken. Nothing fried, barely any baked goods(cookies or doughnuts) No unhealthy snacks and absolutely NO Fast Food!

Hope my input helps.

Blessed Be

[earthwitch]

I was low in B12 until I finally got checked out for malabsorption problems and diagnosed with coeliac disease. Once that was sorted I haven't been low in B12 since.

[Gigi71]

Thank you Kai, you are a font of knowledge and research. Have been very interested in your many helpful replies to people's questions. Keep going.

[NanaFifi]

Thanks for that Kai-- lots of really helpful information.

[Gigi71]

Thank you dear Kia, I am working through the information given. Are you from the USA.

[Gigi71]

Oh well, none the wiser, but hey ho. I only ask for fear of offending you. I do sometimes find these sites go for the overkill. Have, however found some of the information very relevant and thank you for that. But will still persevere, slower brain cells these days!!!!! I have been on a low carb high protein diet for 3 years by Zoe Harcombe with good success. As usual with me, have gone somewhat of track of late. Something will click and I will get inspired again. I am looking into gut health at the moment so bear with me. Regards

[NanaFifi in reply to Gigi71]

I had never heard of the Harcombe diet Gigi71 so thank you for sharing, I had a look online and was impressed enough to download a copy of "Stop Counting calories and start losing weight" to my Kindle! I'm carrying about 10lbs extra and can't seem to shift it although I must admit my attempts have been pretty half hearted! I LOVE food!! And not the healthy stuff - butter; cheese; puddings; ice-cream . . . . The list is endless lol!

Anyway, thanks to you I am going to give this a go, I'm prone to yeast infections so I am particularly interested in what Ms Harcombe has to say about Candida and diet/how we eat.

Wish me luck

[Gigi71 in reply to NanaFifi]

Hi Nanafifi. So pleased to have inspired you to have a look and then like. The weight just fell off me, it was a tagg hard at first, but because she makes you understand why this works and questions what the diet world try to sell us and why they don't work. Also many so called experts in health. I was never hungry because protein and fat are more satisfying. I truly believe sugar is the main killer. It's in 3 stages so I did miss fruit at first but I love veggies I eat fruit in moderation now. I did lose too much weight and family and friends got rather worried. I think I am just right now. I do on occasions now go a little off track. But basically still keep to it. I do wish you luck and if you need any help please contact me.

[NicolaP]

My B12 was 167 in December and 142 in February, PA test came back as normal and Folate levels are apparently normal. GP wrote to Rheumy to ask if drugs could be causing problem but he was of the opinion that as hadn't been taking MTX since last taken the previous June it was unlikely to be the current issue. MTX can apparently affect B12 levels but so can Omeprazole. I was put on Omeprazole in Sept 2010 twice a day and at no point was it suggested I should reduce the dose. After issues earlier this year I have reduced to 1 per day and most of the time it is keeping the stomach problems at bay. If I stop completely I end up with acid reflux within a couple of days and I do have a haetus hernia. GP initially said he would give me B12 loading injections (which is NICE guidelines for results under 150, even though 190 is considered bottom of normal) and then backtracked saying as my HB was very low it suggested problem was more likely due to iron anaemia so just gave me very low dosage cynocoalabim tablets which within a few days made me depressed so had to stop taking them. GP reluctant to give me injections because of the reaction so left it at that. By May bank holiday iron had improved a little and inflammation markers had lowered but not feeling good with symptoms which at least suggested to me that B12 could well have dropped further. Due to issues getting a blood test done if they would agree, decided to purchase the B12 sublingual spray from Holland and Barrett which gets well recommended. Had a B12 blood test done in July which showed an increased to 287 which according to another GP in the surgery is normal so nothing needed. My somewhat sarcastic reply was that it was only down to me taking action. 287 isn't considered very good by most in the "know" so will have to continue self medicating. The problem you will find is that many GPs appear to not be very well up on B12 issues. My sister has had problems for some years and her GP insisted she must have MS and sent her down that route even though the NICE guidelines say that B12 issues should be eliminated first. She's almost got to the stage when the neurologist thinks she definitely doesn't have MS (waiting for appointment after yet another set of MRI scans) and is waiting for what she hopes is the last appointment with the neurologist and that her GP (different surgery to mine) will hopefully finally accept it. Her B12 is now up to 900 due to B12 sublingual spray and other problems, such as rosacea, have gone away. B12 deficiency in this country is unfortunately a bit of a minefield and very much a lottery within the NHS as to whether your GP knows much about it.

[Gigi71]

Thank you Kai again, and for your wonderful humour. I did a Tiaost diet many years ago, about 5 years after I was DX and had very good results, it was more plant based. I did this for 18months and newly divorced and in the end found it socially hard to keep up, have still kept some of the things I learned from that time, in connection with my health. Basically our bodies are engine's and food the fuel, if we put in the wrong stuff it fails. The Harcombe diet made a lot of sense to me and reduced my inflammation a great deal. But am always interested in diet for health, not sure I could commit to a full plant based diet. So pleased it works for you. Take care.